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Palliative Care

Volume 39:11 November 2011

The continuously updated review of clinical medicine

Palliative Care
INTRODUCTION

Palliative care: introduction

635

PaulWKeeley
SimonNoble

Evolution and change in palliative care


around the world

Emergencies in palliative medicine

Palliative care in non-malignant disease


636

Other problems in palliative care

PHYSICAL PROBLEMS

Care in the last hours and days of life

Pain control

LauraChapman
JohnEllershaw

639

645
648

Ethical issues in palliative care

651

VictoriaJWheatley
IloraGFinlay

AshiqueAhamed
SamHjelmelandAhmedzai

DamienJ McMullan
EmmaLundy
ClareWhite
NeilJackson

Spiritual and cultural issues at the end


of life

678

DavidMitchell

PaulWKeeley

Psychiatric conditions in palliative medicine

674

SOCIAL AND ETHICAL ISSUES

KarenHSimpson

Breathlessness in advanced disease

668

SimonNoble

BeeWee
RichardHillier

Nausea and vomiting

664

AmyCGadoud
MiriamJJohnson

DavidClark
FionaGraham

Interventional techniques for pain


management in palliative care

660

AndrewFowell
NicholasSAStuart

680

REACTIONS TO LOSS

656

Reactions to loss

683

IsobelBremner
SELF-ASSESSMENT

Self-assessment/CPD

687

Eric Beck

Chapter Editor
Simon Noble MBBS FRCP PGCE DipPalMed
is Clinical Senior Lecturer and Honorary Consultant
in Palliative Medicine, Royal Gwent Hospital,
Newport, Wales.

www.medicinecpd.co.uk
www.medicinejournal.co.uk
ONLINE, IN PRINT, IN PRACTICE
2011 Elsevier Ltd

ISSN 13573039

Medicine

Chairman of the Editorial Board

Allister Vale MD FRCP FRCPE FRCPG FFOM FAACT FBTS Hon FRCPSG
Consultant Clinical Pharmacologist and Director of the National Poisons Information Service (Birmingham Unit) and the West Midlands
Poisons Unit, City Hospital, Birmingham. He was formerly Medical Director of the MRCP (UK) Examination

Medical Editor and Specialist Advisor on Clinical Pharmacology and Therapeutics

John Mucklow MD FRCP FRCPE FBPharmacolS FHEA


Associate Medical Director, MRCP (UK) Central Office, and formerly Consultant Physician and Clinical Pharmacologist, University Hospital
of North Staffordshire, Stoke-on-Trent

Honorary Vice-presidents

Alasdair Geddes CBE FMedSci FRCP FRCPE FRCPath

John Horder CBE FRCP FRCGP

Editorial Board
Eric Beck MBBS FRCP FRCPG FRCPE

Jonathan Fox BSc MD FRCPG

Royal Free and University College Medical School, London

Consultant Nephrologist, NHS Greater Glasgow and Clyde

Dominic Beer MA MD FRCPsych

Simon Gregory MMedEd FAcadMed FHEA FRCGP

Consultant Psychiatrist, Oxleas NHS Foundation Trust, and Honorary Senior


Lecturer at the Institute of Psychiatry, London

Derek Bell MD FRCP FRCPE FRCPG


Professor of Acute Medicine, Imperial College, London

Nick Boon MA MD FRCPE FESC


Consultant Cardiologist, Edinburgh Royal Infirmary, Edinburgh

Kenneth Cochran FRCPG FRCP FRCPE


Chairman of PLAB and formerly Postgraduate Dean, NHS Education for
Scotland, and Consultant Physician and Gastroenterologist, Victoria
Infirmary, Glasgow

Jane Dacre MD FRCP FRCPG


Vice Dean and Director of Medical Education, Faculty of Biomedical Sciences,
University College London; formerly Academic Vice-President, Royal College of
Physicians; Medical Director, MRCP(UK) Examination

Neil G Dewhurst MD PRCPE FRCP


President of the Royal College of Physicians of Edinburgh, Consultant
Cardiologist at Perth Royal Infirmary and Honorary Senior Lecturer in
Medicine at the University of Dundee

Sean Dinneen MD FRCPI FACP


Senior Lecturer in Medicine, NUI, Galway and Consultant in
Diabetes and Endocrinology, Galway University Hospitals, Ireland

Andrew Elder BSc MBChB FRCPE FRCPSG


Consultant in Acute Medicine for the Elderly at the Western General Hospital,
Edinburgh

Postgraduate Dean, East of England, Cambridge and GP, King Edward Road
Surgery, Northampton

George Griffin PhD FRCP FRCPE FRCPath FMedSci


Head of Division of Cellular and Molecular Medicine; Vice Principal
(Research) and Dean of Clinical Affairs, St Georges Hospital
Medical School, London

Parveen Kumar CBE MD FRCP FRCPE


Consultant Physician and Gastroenterologist, St Bartholomews and Royal
London School of Medicine, London; formerly Academic Vice-President,
Royal College of Physicians; President, Royal Society of Medicine

John Rees MD FRCP


Professor of Medical Education at Kings College London School of Medicine
and Dean of Undergraduate Education and Consultant Physician at Guys
and St Thomas NHS Foundation Trust, London

John Scadding MD FRCP


Consultant Neurologist, National Hospital for Neurology and
Neurosurgery, London

John Staffurth MBBS MD MRCP FRCR


Clinical Senior Lecturer in Oncology at Cardiff University, Cardiff

Jane Tighe PhD FRCP FRCPE FRCPath


Consultant Haematologist, Aberdeen Royal Infirmary, Aberdeen

Niall Finlayson OBE PhD PPRCPE FRCP FRCSE

Ian Young BSc MD FRCP FRCPath

Honorary Fellow (Clinical Teaching), College of Medicine and Veterinary


Medicine, University of Edinburgh

Professor of Medicine, Queens University Belfast, Northern Ireland,


Associate Medical Director, Belfast Health and Social Care Trust

International Advisory Board


Rashad Barsoum MD FRCP FRCPE

Kar Neng Lai MD DSc FRCP FRCPE FRCPG FRACP FRCPath

Professor of Medicine, Cairo University, and Chairman of the Cairo Kidney


Center, Cairo, Egypt

University Head and Chief of Medicine at the Department of Medicine,


University of Hong Kong and Queen Mary Hospital, Hong Kong

K V Johny MD FRCP FRCPG FRCPE FRCPL FACP

B K C Ong MBBS MMED (INT MED) FRCP

Professor and Chairman, Department of Medicine, Kuwait University,


Safat, Kuwait

Associate Professor and Chairman of the Medical Board at the National


University Hospital, Singapore, and Head of Neurology at the National
University Hospital

K O Lee BSc MBBCh MD FRCP FRACP


Professor of Medicine, Yong Loo Lin School of Medicine, National University
of Singapore, Singapore

Rezvi Sheriff MD FRCP FRACP

Joseph Muscat-Baron BSc BPharm MD FRCP FRCPE FRCPG

Senior Professor of Medicine and Consultant Physician Nephrologist at the


National Hospital of Sri Lanka, Colombo, Sri Lanka

Professor of Medicine and Clinical Dean at the Dubai Medical College,


and Honorary Consultant Physician and Cardiologist at the Department
of Health and Medical Services, Dubai

Consultant Endocrinologist, Professor Autonomous,


University of Barcelona, Hospital Sant Pau, Spain

Susan Webb MD PhD

INTRODUCTION

Palliative care: introduction

needs of patients with advanced non-malignant disease are very


similar to those of cancer patients. For example, a patient with
New York Heart Association (NYHA) stage IV heart failure has
a worse prognosis than someone with metastatic breast cancer.
The challenges for palliative care and community teams in the
future will be to provide equitable care for cancer and non-cancer
patients alike. This chapter on palliative care will look at the
management of common symptoms that healthcare professionals
will face when caring for patients with advanced incurable
illness. It also includes sections on the management of nonmalignant disease, such as heart failure, chronic lung disease,
neurodegenerative conditions and renal failure.
As medicine progresses, so too does our ability to keep
patients alive. In short, we are gradually changing the natural
history of cancer and this inevitably results in new complications
of disease, which patients did not previously live long enough to
develop. As much as our medical skills equip us to manage
diverse complex symptoms, we must not lose sight of the
psychological, social and spiritual dimensions of a persons life.
We have included articles on spirituality, ethics of end-of-life
care and bereavement, reflecting the multiprofessional
approach required.
Within the whole of medicine, evidence-based practice is
essential and palliative care is no exception. However, the
evidence base for many therapies is based on little robust
evidence or is extrapolated from data from a different patient
population. There is an urgent need for robust large-scale studies
in the advanced cancer and non-cancer population. Sadly, there
are several barriers to research in palliative care. There are often
difficulties recruiting enough patients sufficiently to power
a study. Within many units there is a paternalistic culture that
does not want to involve this sort of patient in a clinical trial.
There is a high level of attrition during studies, which has prevented the completion of several ambitious studies. Finally, some
consider the ethics of research in the palliative care setting as an
ethical hot potato and something that is difficult to justify before
an ethics committee. In truth, it can be argued that practising
medicine with a poor evidence base is unacceptable and denying
patients the process by which we can improve the level of
evidence-based care is itself ethically unacceptable.
We hope you will find the articles in this issue, written by
current experts in their fields, stimulating and informative. There
is no second chance to improve the care of the dying patient.A

Paul W Keeley
Simon Noble

Abstract
Forty years on from the opening of St Christophers Hospice and 20 years
after the speciality was formally recognized as a medical speciality, palliative medicine remains as diverse as ever. No longer a terminal care
service, the speciality continues to evolve its role into supportive care
and the management of non-malignant disease. Future challenges will
include ongoing partnership working between the independent and statutory sector, undertaking rigorous research and looking after an increasingly ageing population.

Keywords hospice; palliative; terminal

Palliative care is the active total care of patients and their families
by a multiprofessional team when the patients disease is no
longer responsive to curative treatment. Although the concept of
the hospice has been in existence since Roman times, the modern
hospice movement evolved from the works of Cicely Saunders,
who founded St Christophers Hospice in 1967. Twenty years
later, palliative medicine was recognized as a speciality by the
Royal College of Physicians and a formal training programme
established.
As the speciality develops, so does its role and scope within
modern healthcare as evidenced by palliative care being
embedded in governmental policy, cancer and end-of-life strategies. It is no longer a service based solely within a hospice;
community- and hospital-based teams are an integral part of
most primary and secondary healthcare services. Likewise, the
remit of palliative care goes beyond the care of the dying patient.
It is recognized that difficult symptoms do not suddenly
appear in the last 48 hours of life; they are often present
throughout the patients journey. For this reason palliative care
services will frequently be involved early on in a patients cancer
journey in order to alleviate complex symptoms as they arise.
More recently, there has been a growing appreciation that the

Paul W Keeley MB ChB MRCGP HCT is a Consultant in Palliative Medicine at


the Glasgow Royal Infirmary, Glasgow, UK. Competing interests: none
declared.
Simon Noble MBBS MRCP PGCE DipPalMed is Clinical Senior Lecturer and
Honorary Consultant in Palliative Medicine, the Department of
Palliative Medicine, Royal Gwent Hospital, Newport, Wales, UK.
Competing interests: none declared.

MEDICINE 39:11

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2011 Elsevier Ltd. All rights reserved.

INTRODUCTION

 The professional literature about the care of the dying


started to shift from anecdote to systematic observation.
 A new view of dying began to emerge, which sought to
foster concepts of personal dignity, autonomy and
meaning at the end of life.
 An active rather than a passive approach to the care of the
dying was promoted with increasing vigour.
 A growing understanding developed about the interdependency of mental and physical distress at the end of life.

Evolution and change in


palliative care around the
world
David Clark
Fiona Graham

Policy and development: UK


In recent years, the UK Government has supported three specific
end-of-life care initiatives in England to extend the principles
of end-of-life care for cancer patients to those dying of other
diseases.3
 The Gold Standards Framework (GSF), which focused on
the improved co-ordination of end-of-life care for patients
in the primary care setting.4
 The Liverpool Care Pathway (LCP), which promoted
optimal care and support for patients in their last days of
life.5
 The Preferred Priorities of Care (PPC) instrument, an
example of advanced care planning, which aimed to help
patients and carers decide, and record in a patient-held
record, where they wish to be cared for at the end of
their life.6
The aim of these initiatives was to improve choice, quality and
responsiveness for all adult patients nearing the end of life.7
A more wide-ranging End-of-life Care Strategy for England, in
which these initiatives became core tools, came into effect in
2008.8 The National End-of-Life Care Programme9 aims to meet
the health and social care needs of all adult patients, in respect of
where they live and die, and to provide a practical framework
that health and social care services can use to build high-quality
provision for people nearing the end of life. It covers 12 key areas
of end-of-life care, including profile raising, commissioning,
research, education and training, service planning and delivery,
and support for and involvement of carers. In the second annual
report of the strategy, examples of progress include grants to
improve hospice environments, public awareness exercises and
the creation of the National End-of-Life Care Intelligence
Network.10,11 Similar initiatives have also developed in Scotland,12 Wales13 and Northern Ireland.14

Abstract
Palliative care developed in the later part of the 20th century as a social
movement and medical speciality. Central to its modern development
were the ideas of Dr Cicely Saunders, whose vision for improving the
care of the dying encompassed the physical, psychological, social and
spiritual domains while emphasizing the importance of rigorous clinical
practice, training and research. St Christophers Hospice, which she
founded, inspired generations of practitioners and influenced the expansion of hospices nationally and internationally. Terminal care evolved into
the discipline of palliative care, which applied holistic principles to the
care of those earlier in their disease trajectory and in different settings,
such as hospitals and the community. Some countries now have national
strategies for palliative care that are supported by government. Palliative
care attracts increasing attention as an aspect of the public health system
and there are calls for access to it to be recognized as a human right. Yet
around the world, palliative care is not uniformly developed and it needs
to press hard to secure full integration with prevailing health policies.
Palliative care still reaches only a tiny proportion of those who could
benefit from it, especially those with diseases other than cancer. The
global challenge for palliative care in the 21st century is to develop
models and coverage appropriate to those in need, whatever their diagnosis, income or setting.

Keywords cancer; end-of-life care; hospice; palliative care; terminal care

Palliative care developed in western societies in the second half


of the 20th century as a response to the increasing marginalization of death in society and the medicalization of dying within
the healthcare system. Today it enjoys increasing recognition as
a medical specialty1 but still faces major challenges of recognition on the part of professionals, patients and the wider public.

The international perspective


Globally, palliative care faces similar challenges: lack of recognition and understanding from health professions and the public;
limited recognition in health policy with insufficient funding; few
accredited training programs; and a paucity of evidence base to
demonstrate efficacy and cost benefits of services.
It was not until 2003 that the first summit on international
palliative care development took place in The Hague. Others
followed in Seoul (2005), Nairobi (2007) and Vienna in 2009 e
leading that year to the creation of the Worldwide Palliative Care
Alliance.15 In 2007, a collaboration of 25 organizations developed a list of essential medicines for palliative care in response to
a request from the Cancer Control Program of the World Health
Organization (WHO). The list comprised 34 medications of

Twentieth century developments


Four key healthcare developments can be identified by the
middle years of the 20th century.2

David Clark PhD is Professor of Medical Sociology and Head of the


School of Interdisciplinary Studies, University of Glasgow, Dumfries
Campus, Scotland, UK. Competing interests: none.
Fiona Graham MBChB MRCGP MMedSci (Palliative Care) is Specialty Doctor in
Oncology, Dumfries and Galloway Royal Infirmary, Scotland, UK.
Competing interests: none.

MEDICINE 39:11

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2011 Elsevier Ltd. All rights reserved.

INTRODUCTION

Figure 1

Palliative care and public health

which 14 were already included in the WHO list as essential in


the treatment of several conditions, some of which are common
in palliative care.16
A series of studies on international palliative care issues,
conducted by the International Observatory on End-of-Life Care,
led to an ambitious attempt to map the level of palliative care
development for every country in the world, using a four-part
typology.17 The total countries in each category were categorized as either having no identified activity (78; 33%), capacity
building (41; 18%), having localized provision (80; 34%), or
approaching integration (35; 15%). The typology differentiated
levels of palliative care development in both hemispheres and in
rich and poor settings. It showed that only half of the worlds
countries had some form of designated palliative care service
(Figure 1).
Building on this work, a study commissioned by the Lien
Foundation in Singapore and carried out by the Economist
Intelligence Unit was published in 2010.18 This, too, attempted
a ranking of palliative care development in 40 countries of the
world, using a more complex set of indicators. The Quality of
Death Index scored on 24 indicators in four categories, each with
a separate weighting: basic end-of-life healthcare environment
(20%); availability of end-of-life care (25%); cost of end-of-life
care (15%); and quality of end of life (40%). There was
considerable synergy with the evidence of the world map
(Figure 2).

MEDICINE 39:11

Recent years have seen growing interest in the twin ideas that
palliative care is both a public health and a human rights issue.
The first of these assumes the insertion of palliative care into
the public health system, thereby positioning it within a framework of need, supply and resource allocation. Several
public health palliative care demonstration projects are now in
operation e in Africa and India, as well as in the wealthier
nations. The other approach seeks recognition for palliative
care within human rights legislation19 e for example, by
incorporating access to palliative medication into a resolution of
the United Nations Commission on Human Rights.20 Palliative
care remains poorly framed within evidence-based global policy
making and more needs to be done to demonstrate its role and
efficacy, not only in relieving physical and psychological
distress but also in promoting community cohesion and
personal resilience. Such recognition is vital if the worlds
palliative care needs are to be met in an equitable and culturally
sensitive manner.

Conclusion
Some 56 million deaths occur worldwide each year and it is
estimated that 60% of these could benefit from some form of
palliative care. Current palliative care provision reaches only
a tiny proportion of those in need. The history of modern

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2011 Elsevier Ltd. All rights reserved.

INTRODUCTION

and location. A massive challenge remains to be overcome if


palliative care is to be delivered to all people in the world who
may benefit from it.
A

Quality of death index


1
2
3
4
5
6
7
8
=9
=9
11
12
13
14
15
16
17
18
19
20
21
22
23
24
25
26
27
28
29
30
31
32
33
34
35
36
37
38
39
40

UK
Australia
New Zealand
Ireland
Belgium
Austria
Netherlands
Germany
Canada
US
Hungary
France
Norway
Taiwan
Poland
Sweden
Luxembourg
Singapore
Switzerland
Hong Kong
Czech Republic
Denmark
Japan
Italy
Iceland
Spain
Slovakia
Finland
Greece
South Africa
Portugal
South Korea
Malaysia
Turkey
Russia
Mexico
China
Brazil
Uganda
India

7.9
7.9
7.7
6.8
6.8
6.6
6.3
6.2
6.2
6.2
6.1
6.1
6.0
6.0
6.0
5.9
5.7
5.5
5.4
5.3
5.2
5.1
4.7
4.4
4.3
4.2
4.2
4.1
4.0
3.8
3.8
3.7
3.7
2.8
2.8
2.7
2.3
2.2
2.1
1.9

REFERENCES
1 Clark D. International progress in creating palliative medicine as
a specialized discipline. In: Hanks G, et al., eds. Oxford textbook
of palliative medicine. 4th edn. Oxford: Oxford University Press,
2010; 9e16.
2 Clark D. Cradled to the grave? Pre-conditions for the hospice movement in the UK, 1948e67. Mortality 1999; 4: 225e47.
3 http://www.dh.gov.uk/en/consultations/Responsestoconsultations/
DH_4068391.
4 Shaw KL, Clifford C, Thomas K, Meehan H. Improving end-of-life care:
a critical review of the Gold Standards Framework in primary care.
Palliat Med April 1, 2010; 24: 317e29.
5 Veerbeek L, van Zuylen L, Swart SJ, et al. The effect of the Liverpool
Care Pathway for the dying: a multi-centre study. Palliative Medicine
2008; 22: 145e51.
6 http://www.endoflifecareforadults.nhs.uk/tools/core-tools/preferred
prioritiesforcare.
7 www.endoflifecare.nhs.uk/eolc/AboutUs/.
8 http://www.endoflifecareforadults.nhs.uk/publications/eolc-strategy.
9 http://www.endoflifecareforadults.nhs.uk.
10 http://www.endoflifecareforadults.nhs.uk/publications/end-of-lifecare-strategy-second-annual-report.
11 http://www.endoflifecare-intelligence.org.uk/home.aspx.
12 http://Scotland.gov.uk/Publications/2008/10/01091608/0.
13 http://www.wales.nhs.uk/sites3/home.cfn?orgid831.
14 http://www.dhsspsni.gov.uk/palliative_and_end_of_life_care_
strategy_-_consult.pdf.
15 http://www.thewpca.org/.
16 http://www.hospicecare.com/resources/pdf-docs/iahpc-em-summary.
pdf.
17 Wright M, Wood J, Lynch T, Clark D. Mapping levels of palliative
care development: a global view. J Pain Symptom Manage 2008; 35:
469e85.
18 http://www.eiu.com/site_info.asp?info_namequalityofdeath_lien
foundation&;pagenoads.
19 Harding R. Palliative care: a basic human right. id21 Insights Health,
http://www.id21.org/zinter/id21zinter.exe?a9&iInsightsHealth
8Editorial&u458167f2; 8 Feb 2006. 1e2.
20 Commission on Human Rights Resolution 2004/26: item 7c calls on
states . to promote effective access to such preventive, curative or
palliative pharmaceutical products or medical technologies.
Available via http://www.ohchr.org/english/.
21 Clark D. From margins to centre: a review of the history of palliative
care in cancer. Lancet Oncol 2007; 8: 430e8.

Source: Economist Intelligence Unit.

Figure 2

palliative care covers less than five decades. During that time it
has established itself as an integral part of the care of the cancer
patient in the UK and beyond.21 The lessons learned must now be
transferred to the care of all dying people, regardless of diagnosis

MEDICINE 39:11

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2011 Elsevier Ltd. All rights reserved.

PHYSICAL PROBLEMS

Pain control

Whats new?

Bee Wee
C

Richard Hillier
C

Abstract
Despite medical advances over the past 20 years, pain remains a problem
in 60% of patients with advanced cancer and end-of-life care. In this
article, we focus on how to assess and diagnose pain, and explore
basic pharmacological and other pain-relieving interventions. Important
issues highlighted are the need for skilled assessment and timely decisions in getting to grips with pain control quickly. Strategies include
the use of the WHO analgesic ladder, effective management of side effects
and how to decide which route of drug administration is appropriate in
different situations. We discuss pain that is unresponsive to opioids
and outline the role of non-pharmacological methods.
Systematic assessment, rapid diagnosis and early effective treatment
are crucial. Radiotherapy, chemotherapy and neuro-anaesthetic interventions have a role, even in patients with advanced disease. But early
referral to specialist palliative care or pain teams is essential for difficult
pains or when pain is not quickly controlled. There is almost always
something that can be done to improve the patients experience.






use of weak or inappropriate analgesics


failure to recognize the degree of suffering
irrational prescribing
breakdown in communication and the coordination of
care.
Patients and staff may still believe that pain is inevitable or
untreatable, or that addiction to opioids occurs when these drugs
are used to relieve pain. None of this is true.
However, perception of pain is aggravated by anxiety, fear of
cancer or impending death, and loss of spiritual direction or
meaning. Successful pain management addresses all of these areas.

Keywords analgesic ladder; bone pain; cancer; morphine; neuropathic


pain; NSAIDs; pain assessment; visceral pain

Pain is a common symptom in patients with advanced cancer and


end-of-life care. In most patients, pain can be eliminated or
substantially reduced if a structured systematic approach is taken.

Diagnosis of pain (Table 1)


 Open questions (e.g. Tell me about your pain or discomfort) are usually sufficient.
 Elucidate all the features of each pain to work out its
underlying mechanism (e.g. site, severity, nature, radiation, exacerbating and relieving factors).
 Obtain a history of drugs already given for pain management to guide further prescribing.
 Elicit any concerns or preconceived ideas and/or the
effects the pain has on the patient or carers.
 Make a provisional diagnosis.
 Perform a targeted examination to confirm this.
 Seek relevant investigations (e.g. radiography, ultrasound,
MRI) only if this will affect management. Investigations
should not be used to confirm an obvious clinical diagnosis, particularly if they lead to delays in management.
 Make a firm diagnosis and establish a management plan as
soon as possible. It is inhumane to procrastinate.
 Review, review and review again the effects of your
management.

Causes of pain
Pain is subjective. It is caused by stimulation of nerve endings or
interference with nerve pathways. It is then perceived centrally
and modified by physical, psychological, social and spiritual
influences. All these factors must be considered, whether pain is
caused by disease, anticancer treatment or the debilitating effects
of illness (e.g. constipation, pressure sores), or is coincidental
(e.g. arthritis, infection).
Poor pain control commonly results from:
 failure to diagnose the cause

Bee Wee MRCGP FRCP PhD is Senior Clinical Lecturer in Palliative Medicine
at Sir Michael Sobell House, Associate Director of Clinical Studies at the
University of Oxford, UK and Visiting Professor at Oxford Brookes
University, UK. She qualified from Trinity College, Dublin. Her research
interests include fatigue and end-of-life care. Competing interests:
none declared.
Richard Hillier MD FRCP is Medical Director of Sue Ryder Care, UK. He
qualified from St Bartholomews Hospital, London. His special interest
is development of palliative care skills in healthcare professionals in all
areas, especially in the community and undergraduate medical
education. Competing interests: none declared.

MEDICINE 39:11

The increasing range of opioid formulations and adjuvant drugs


provides greater choice and convenience for patients, but their
use must be supported by evidence and clinical experience
The experience of managing pain in the context of cancer is now
being translated to other life-limiting and long-term conditions.
Research continues to test the assumption that these lessons
are automatically transferable
Opioid switching is more frequently practised, especially with
the availability of alternative opioids. But this should only occur
with specialist support, because robust evidence for its effectiveness is awaited
The prevalence of pain in cancer patients remains over 60%.1
Almost one in two remains undertreated,2 and this is comparable to those with other life-limiting conditions

Pharmacological management
Opioid-responsive pain
Chronic cancer pain requires appropriate and regular use of
analgesics in a structured, systematic manner (Table 2).

639

2011 Elsevier Ltd. All rights reserved.

PHYSICAL PROBLEMS

Assessing pain

WHO analgesic ladder

Tell me about any pain you have


For each pain, consider the following:
C
C
C
C
C
C

Strong opioid
+ non-opioid
adjuvants

Palliative factors e What makes it better?


Provocative factors e What makes it worse?
Quality e What is it like?
Radiation e Where does it spread to?
Severity e How bad is it?
Temporal factors e Is it constant? Does it come and go?

ree

Analgesic history (repeat for non-pharmacological measures):


C
C
C
C
C

Step tw
Non-opioid
adjuvants

What has helped in the past?


What has not helped in the past?
Show me exactly what you are taking now
How much and how often?
Does it help the pain? Does it relieve the pain or only reduce
it?
Does your medicine do anything that you dont like?

Step on

Figure 1

Elicit the patients (and carers) fears, concerns and beliefs about the pain,
and pharmacological and non-pharmacological interventions.

Step one e paracetamol (1 g 4-hourly) is the drug of choice for


mild pain, particularly in elderly or frail patients (maximum
4 g/24 hours). A non-steroidal anti-inflammatory drug (NSAID)
can be added or substituted in those with bone pain that is not
relieved by paracetamol alone,5,6 provided there is no renal
impairment.
Step two e when step one is insufficient, weak opioids need
to be added, for example, codeine (30e60 mg 4-hourly) or
dihydrocodeine (30e60 mg 4e6 hourly). Tramadol (50e100 mg
4e6 hourly) is often introduced at step two, but should not delay
progression to step three if the degree of pain requires it.
Step three e for severe pain, the drug of first choice is morphine.
The starting dose of oral morphine is usually 5e10 mg 4-hourly, but
should be 10e20 mg 4-hourly in patients moving from step two to
step three. The starting dose should be halved or even lower in frail
or elderly patients. Potent metabolites of morphine are excreted by
the kidney and accumulate in patients with impaired renal function.
The dose may need to be reduced in mild renal failure, e.g. if
adverse effects become a problem. With more severe renal
impairment (e.g. eGFR <60 mL/min), alfentanil, fentanyl, hydromorphine or methadone should be considered, but specialist
guidance is essential. Despite many new analgesics, the gold standard in the treatment of severe pain remains morphine.7 Alternative
strong opioids are shown in Table 3. The following principles apply
when using morphine or similar strong opioids for pain control.
 Oral administration is the route of choice.
 Regular administration is mandatory, at a frequency
depending on the duration of action of the drug.
 There is effectively no ceiling to the dose of morphine given
(unlike the weak opioids). When rapidly escalating doses
are required, complete reassessment of the pain is essential.

Table 1

Analgesic ladder: the World Health Organization (WHO) analgesic ladder (Figure 1)3 is a useful and effective concept in the
treatment of mild, moderate and severe pain; used alone, it eliminates pain in 80% of patients. The remaining 20% have difficult
pains requiring more complex management.4 When pain control is
not achieved, it is essential to move up the analgesic ladder rather
than change to another drug of similar potency (a common pitfall
for inexperienced clinicians, who may be wary of using strong
opioids). Because drugs at the top of step two have similar potency
to drugs at the bottom of step three, it may be desirable to move
directly from step one to three in those with severe pain.

Basic principles of prescribing analgesics


C

Continuous pain requires continuous relief e as-required


dosing is illogical
Each patients dosing regimen must be individually determined;
titration on a daily basis, preferably with immediate-release
opioids, is necessary until pain is controlled
When mild analgesics fail, move up the World Health
Organization analgesic ladder (Figure 1)
Short-acting breakthrough analgesia should always be
prescribed in addition to regular analgesics
Opioid analgesics cause constipation in most patients;
a combination of softening and stimulant laxatives is required
Respiratory depression, tolerance and habituation rarely occur
when opioids are properly titrated upwards in response to pain
More complex pains require a combination of approaches; early
referral to a specialist palliative care and/or pain-relief team is
advised

Unwanted effects of morphine


Morphine differs from many drugs in that most of its adverse
effects tend to wear off within 2e3 weeks, but its analgesic effect
does not. Three of the most bothersome symptoms are:

Table 2

MEDICINE 39:11

Step th

Weak opioid
+ non-opioid
adjuvants

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2011 Elsevier Ltd. All rights reserved.

PHYSICAL PROBLEMS

Other alternative strong opioids


Name of opioid

Comment

Potency ratio with morphinea

Diamorphine (parenteral)

Similar effect to morphine, but more potent and more soluble: higher
concentrations achievable in smaller volumes, therefore useful for
subcutaneous injections or infusions when doses are high; not
universally available
Similar efficacy and adverse effect profile to morphine
Causes less constipation than morphine; useful in renal impairment
Particularly useful alternative to parenteral morphine in renal impairment
Difficult to use because of long (up to 72 hours) and variable half-life. May
be useful in moderate-to-severe renal impairment and neuropathic pain
Similar efficacy and side effect profile to morphine; popular in some
countries
Useful non-oral alternative to morphine; may partially antagonize the effect
of morphine; start with lowest dose patch

Oxycodone (oral)
Fentanyl (transdermal)
Alfentanil (parenteral)
Methadone (oral)
Hydromorphone (oral)
Buprenorphine (transdermal)

1.5e2
100
25e30
5e10
7.5
30e60

Conversion tables act as a guide only. Titration according to individual patient requirements is essential and when unfamiliar with titration, specialist advice should be
sought.
a
Multiply dose of opioid by its potency ratio to determine the equivalent dose of oral morphine.

Table 3

 Constipation: universal and does not diminish. Laxative


prescriptions containing a stimulant (e.g. senna) and softener (e.g. magnesium hydroxide) should anticipate the
problem. Combination agents (e.g. co-danthrusate capsules,
co-danthramer suspension) are also effective. Bulk-forming
laxatives (e.g. ispaghula husk) are inappropriate in frail
patients with poor fluid intake.
 Nausea and/or vomiting: occurs in about 30% of patients but
because it is difficult to predict, an anti-emetic should be
prescribed for all patients, at least on an as-needed basis. A
centrally acting anti-emetic (e.g. metoclopramide 10 mg three
times daily or haloperidol 1.5 mg at night) should be used.
 Drowsiness: patients should be reassured that this abates
after 5e7 days.

 Subcutaneous injections are preferred over intramuscular


(more painful) or intravenous (more restrictive and causes
more peaks and troughs in pain control) ones. The latter
may be necessary in patients with poor peripheral blood
flow. In busy, acute hospitals with staff shortage, patientcontrolled analgesia can have practical advantages.
However, this is neither feasible nor desirable in the home
where the patient has direct access to analgesics as needed.
 Continuous subcutaneous infusions are useful in all
settings (see Table 4). Most common drugs (including
morphine, diamorphine, haloperidol, cyclizine, metoclopramide, midazolam, methotrimeprazine and dexamethasone) may be used concurrently in the syringe-driver.
Chlorpromazine, prochlorperazine and diazepam should
not be used because of skin reactions. Cyclizine may cause
minor skin irritation: changing the injection site usually

Useful routes of administration of opioids


Oral e immediate-release morphine preparations are available
as liquid or tablets and should be used initially to establish the
patients individual analgesic requirement.8 Because the drug is
given at 4-hourly intervals, the dose may be increased on a daily or
even twice-daily basis to achieve rapid pain control. Once the pain is
controlled, switch to a more convenient modified-release preparation. Use of modified-release morphine preparations has simplified
treatment schedules, improved patient compliance and reduced
patient and family anxiety. They are used most safely when pain has
been controlled by immediate-release preparations. Experienced
clinicians may choose to start with modified-release preparations in
selected patients. They are available as 12-hourly and 24-hourly
preparations, as suspension or tablets, and in a wide range of doses.
Parenteral e this may be necessary when patients cannot
take their drugs by mouth (e.g. dysphagia or nausea). Morphine
and diamorphine have similar efficacies but in countries where it
is available, diamorphine is preferred for parenteral administration (see Table 3) because it is more soluble and can be given in
a smaller volume.

MEDICINE 39:11

Indications for use of a syringe-driver


Oral route inappropriate
C
C
C
C

Vomiting
Dysphagia
Weakness
Unconscious patient

Repeated injections inappropriate


C
C
C
C

Cachexia
Discomfort
Large-volume injections
Patient fears injections

Practicalities, e.g. 4-hourly injections, are difficult to arrange at home.

Table 4

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2011 Elsevier Ltd. All rights reserved.

PHYSICAL PROBLEMS

are usually necessary, the addition of tricyclic antidepressants13


(e.g. amitriptyline 25e150 mg at night) or anticonvulsants14,15
(e.g. gabapentin 100e600 mg three times daily or carbamazepine 100e400 mg twice daily) may help. Corticosteroids may be
useful in reducing oedema around the nerve or when the tumour
causing the pain is corticosteroid-sensitive. If these measures fail,
early referral for a neuro-anaesthetic procedure or for guidance
on use of third-line agents, such as ketamine, methadone or
flecainide, is necessary. Neuropathic pain is always complex, so
the specialist palliative care team should be involved well before
a vicious cycle of pain develops.

resolves this problem. To convert oral to parenteral


morphine, divide the oral dose by 2.
Transdermal e fentanyl is available as a transdermal patch
with several different strengths.
 Like morphine, it acts on opioid mu receptors and is
therefore effective only in morphine-responsive pains. It is
convenient, causes less severe constipation and may be
useful when renal function is impaired.
 Each patch is effective for 72 hours. But like other modifiedrelease analgesics, it should be used only after shorter-acting
drugs have achieved pain control (e.g. oral morphine).
 Unlike morphine, fentanyl does not appear to act on opioid
mu-2 receptors. Consequently, some patients experience
morphine withdrawal (e.g. flu-like symptoms, nausea,
vomiting, diarrhoea, sweating, abdominal cramps) when
converted from morphine to fentanyl.9 These effects are selflimiting and are relieved by breakthrough doses of
immediate-release morphine.
Rectal e morphine suppositories are available, but are rarely
needed.

Visceral pain is caused by growth within an organ (e.g. liver


metastases), obstruction causing local inflammation, or direct
invasion of visceral parietal surfaces. Opioids should be
increased to achieve maximal effect. Patients with pancreatic or
upper gastrointestinal pain should be referred early to a painrelief team for coeliac plexus block.16 Corticosteroids to reduce
capsular oedema (e.g. liver pain) may be useful.
Bladder pain results from potentially reversible causes
(e.g. infection), or direct irritation by a catheter or tumour. Opioid
analgesia should be optimized. Oxybutynin hydrochloride (5 mg
three times daily) may be helpful in unstable bladder conditions.
Intravesical local anaesthetic (e.g. bupivacaine) may be useful in
patients with painful bladder or urethral spasm associated with an
indwelling catheter.

Pain partially responsive to opioids


Some pains are only partially responsive to opioids and may
require co-analgesics and/or other interventions. Co-analgesics
are adjuvant drugs that contribute to pain control when used
with a conventional analgesic. They may have pain-relieving
qualities of their own (e.g. NSAIDs) and/or enhance the effect of
other drugs (e.g. tricyclic antidepressants). Interventions such as
radiotherapy may be particularly helpful for bone pain, and
chemotherapy for pain related to chemo-sensitive tumours. About
10e15% of patients with cancer suffer pain that requires neuroanaesthetic intervention. Here, referral to, or liaison with,
a pain-relief clinic or pain centre is essential. Procedures may be
aimed at neural blockade (e.g. epidural opioids, intercostal block)
or neurodestruction (e.g. percutaneous cordotomy, coeliac plexus
neurolysis). Detailed discussion of these procedures is beyond the
scope of this paper. Issues relating to specific pains are as follows.

Rectal pain often occurs as a combination of tenesmus, spasm


and poorly localized perineal pain. When pain results from
tumour recurrence, anticancer therapy (e.g. pelvic radiotherapy) must always be considered. Rectal pain is usually
a mixture of opioid-responsive and neuropathic pain. Opioids,
co-analgesics and neuro-anaesthetic interventions have a role in
management.
Breakthrough pain occurs between doses of an effective analgesic. It is usually due to inadequate dosing, in which case the
dose should be increased. Rescue breakthrough analgesia
should always be prescribed for patients taking regular analgesics. Because this needs to work rapidly, immediate-release
morphine is the drug of choice. The dose should usually be
equivalent to one-sixth of the total daily dose of oral morphine.

Bone pain can be severe and debilitating. Metastases are usually


tender on palpation and confirmed by radiography or isotope
bone scan. Radiotherapy provides good palliation when the pain
is localized, and single fraction is as helpful as multifraction
radiotherapy in these situations.10 A combination of strong
opioids and NSAIDs is usually helpful. Long bones, weakened by
metastases, may require pinning to prevent fractures and
improve pain management. Similarly, cementoplasty for vertebral metastases may be considered. Radioactive strontium11 can
be a simple and effective remedy in pain caused by bone
metastases secondary to prostatic carcinoma. In selected patients
with severe bone pain related to breast cancer, prostate cancer or
myeloma, bisphosphonates12 may be used by specialist teams.

Incident pain17 is episodically severe pain against a background


of relatively well-controlled pain (e.g. pain on movement in
a patient who is comfortable at rest). Increasing the opioid dose to
prevent intermittent pain may result in unacceptable adverse
effects. Breakthrough analgesia may be sufficient when movement can be predicted and planned, but in other situations
modification of lifestyle (e.g. use of an indwelling catheter) may
be required. Co-analgesics, antispasmodics and neuro-anaesthetic
interventions may have a role (see Interventional techniques for
pain management in palliative care on pp 645e647 of this issue).
New preparations, such as transmucosal, intranasal or sublingual
fentanyl, are now available and may have a place, but clinical
experience with these medications remains limited. Careful
assessment, review and individualized titration of medication are
critical for a successful outcome.18

Neuropathic pain is pain initiated or caused by a primary lesion


or dysfunction in the nervous system. Patients often describe it as
stabbing, shooting, burning, stinging, aching or pins and
needles. The pain is caused by interruption or destruction of the
nerve pathway. It is partially opioid-responsive and opioids
should be titrated upwards until no further benefit is derived or
until adverse effects become unacceptable. Because co-analgesics

MEDICINE 39:11

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2011 Elsevier Ltd. All rights reserved.

PHYSICAL PROBLEMS

 Ensure pain control by titrating analgesic doses without


overdosing. It is unethical to continue increasing the dose
after the pain has been controlled, or when the pain no
longer responds to that analgesic.
 Recognize that analgesics are for pain control and are not
to be used as sedatives, for which more appropriate drugs
are available. It is unethical to increase the analgesic dose
to keep patients sedated.
 Doctors should recognize their own limitations and request
timely help and advice from specialist palliative care and/
or pain-relief services. It is unethical to soldier on when
experienced specialists are available.

Pains that are complex and difficult to control usually require


the skills of a specialist interprofessional team. Early referral to
a specialist palliative care and/or pain-relief service is helpful.
Even a telephone conversation may help.
Pain not responsive to opioids
On their own, opioids are seldom helpful in pain resulting from
muscle spasm or fractures. These require specific, cause-directed
treatment (e.g. diazepam 5e10 mg at night or baclofen 5e10 mg
three times daily for spasms). Fractures should be fixed internally whenever possible; this is the only technique that guarantees immobilization and pain control, particularly during nursing
and therapeutic procedures. Fixation is worthwhile even in frail
patients with a poor prognosis.

Non-pharmacological measures
REFERENCES
1 van den Beuken-van Everdingen MHJ, de Rijke JM, Kessels AG, Scouten HC,
van Kleef M, Patihn J. Prevalence of pain in patients with cancer:
a systematic review of the past 40 years. Ann Oncol 2007; 18: 1437e49.
2 Deandrea S, Montanari M, Moja L, Apolone G. Prevalence of undertreatment in cancer pain. A review of published literature. Ann Oncol
2008; 19: 1985e91.
3 World Health Organization. Cancer pain relief and palliative care,
technical report 804. Geneva: WHO, 1990.
4 World Health Organization. Cancer pain relief. Geneva: WHO, 1996.
5 McNichol E, Strassels SA, Goudas L, Lau J, Carr DB. NSAIDS or paracetamol, alone or combined with opioids, for cancer pain. Cochrane
Database Syst Rev 2005. Issue 2. Art. No.: CD005180.
6 Moore A, Edwards J, Barden J, McQuay H. Bandoliers little book of
pain: an evidence-based guide to treatments. Oxford: Oxford
University Press, 2003.
7 Hanks GW, de Conno F, Cherny N, et al. Morphine and alternative opioids in
cancer pain: the EAPC recommendations. Br J Cancer 2001; 84: 587e93.
8 Wiffen PJ, McQuay HJ. Oral morphine for cancer pain. Cochrane
Database Syst Rev 2007. Issue 4. Art. No.: CD003868. doi:10.1002/
14651858.CD003868.pub2.
9 Twycross R, Wilcock A, Charlesworth S, Dickman A. Palliative care
formulary. 3rd edn. Oxford: Radcliffe Medical Press. Also available at:
www.palliativedrugs.org; 2002 (accessed 14 Jan 2008).
10 Sze WM, Shelley M, Held I, Mason M. Palliation of metastatic bone
pain: single fraction versus multifraction radiotherapy. Cochrane
Database Syst Rev 2004. Issue 2. Art. No.: CD004721. doi:10.1002/
14651858.CD004721.
11 Roque M, Martinez-Zapata MJ, Alonso-Coello P, Catala E, Garcia JL,
Ferrandiz M. Radioisotopes for metastatic bone pain. Cochrane
Database Syst Rev 2003. Issue 4. Art. No.: CD003347.
12 Wong R, Wiffen PJ. Bisphosphonates for the relief of pain secondary
to bone metastases. Cochrane Database Syst Rev 2002. Issue 2. Art.
No.: CD002068.
13 Saarto T, Wiffen PJ. Antidepressants for neuropathic pain. Cochrane
Database Syst Rev 2007. Issue 4. Art. No.: CD005454. doi:10.1002/
14651858.CD005454.pub2.
14 Moore RA, Wiffen PJ, Derry S, McQuay HJ. Gabapentin for chronic
neuropathic pain and fibromyalgia in adults. Cochrane Database Syst
Rev 2011. Issue 3. Art. No.: CD007938. doi:10.1002/14651858.
CD007938.pub2.
15 Wiffen PJ, Derry S, Moore RA, McQuay HJ. Carbamazepine for acute
and chronic pain in adults. Cochrane Database Syst Rev 2011. Issue
1. Art. No.: CD005451. doi:10.1002/14651858.CD005451.pub2.

Non-pharmacological measures may help patients with pain of


any cause, particularly when drugs alone are insufficient.
Physical interventions may be simple (e.g. application of cold
or heat), but more technical expertise may sometimes be
needed.
Transcutaneous electric nerve stimulation (TENS)19 sends an
impulse through A-b-afferent nerves to counteract the painful
stimulus conducted through A-d- and C-afferent nerves. It is
particularly helpful in neuropathic pain, has few adverse effects,
and allows patients an element of control. Its efficacy is unpredictable and tends to decrease over time.
Acupuncture e in acupuncture, traditional Chinese points are
stimulated by insertion of fine needles. However, the effectiveness of this technique depends on the skill of the practitioner.
The response induced is similar to that seen for TENS.
Physiotherapy e skilled pain physiotherapists can administer
other techniques, such as thermal stimulation and ultrasound
therapy, in addition to the procedures above. With occupational
therapists, they have developed relaxation techniques and other
treatment strategies.
Complementary therapies are increasingly popular and
include massage, aromatherapy, reflexology, meditation and
herbal remedies. The evidence for their efficacy is not strong but
many patients find them helpful. This may be due to the treatment itself, the intense personal attention given to the patient by
the therapist or, more likely, a combination of these.
Exercise e persistent pain often leads to reduced mobility,
which itself increases the pain. Attempts to maintain a pain-free
posture can exarcerbate the discomfort. Careful positioning and
simple exercises improve both. Psychological, emotional and
spiritual concerns are almost always relevant when pain is
difficult to control. Skilled, individualized management of
anxiety, depression, insomnia and existential distress may be
central to effective pain control in these patients and often
require the involvement of specific members of the interprofessional team, including psychologists, psychiatrists and chaplains.

Ethical considerations
The ethics of pain control are of increasing importance.
 Give regular analgesics of sufficient strength for continuous
pain. It is unethical to leave a patient in pain because of
professional misunderstandings about the use of controlled
drugs.

MEDICINE 39:11

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2011 Elsevier Ltd. All rights reserved.

PHYSICAL PROBLEMS

16 Arcidiacono PG, Calori G, Carrara S, McNicol ED, Testoni PA. Celiac


plexus block for pancreatic cancer pain in adults. Cochrane Database
Syst Rev 2011. Issue 3. Art. No.: CD007519. doi:10.1002/14651858.
CD007519.pub2.
17 Mercadante S, Radbruch L, Caraceni A, et al. Episodic
(breakthrough) pain. Consensus Conference of an Expert Working
Group of the European Association for Palliative Care. Cancer
2002; 94: 832e9.
18 Davies AN, Dickman A, Reid C, Stevens A-M, Zeppetella G. The
management of cancer-related breakthrough pain: Recommendations
of a task group of the Science Committee of the Association for
Palliative Medicine of Great Britain and Ireland. Eur J Pain 2009; 13:
331e8.
19 Robb KA, Bennett MI, Johnson MI, Simpson KJ, Oxberry SG. Transcutaneous electric nerve stimulation (TENS) for cancer pain in
adults. Cochrane Database Syst Rev 2008. Issue 3. Art. No.:
CD006276. doi:10.1002/14651858.CD006276.pub2.

MEDICINE 39:11

Practice points
C

644

Effective pain control is essential for patients and rewarding for


doctors; it requires full assessment and diagnosis of the pain,
including physical, psychological, social and spiritual
components
The WHO analgesic ladder is the key to effective pain control,
and relieves or reduces more than 80% of cancer pains; more
complex pains require specialist referral
As life-threatening disease advances, pain tends to worsen;
constant review and analgesic adjustment is vital
Pain responds to appropriate therapy; suffering responds to
empathy, concern and a feeling that one is being listened to e it
is important to distinguish between these and to use appropriate measures for each

2011 Elsevier Ltd. All rights reserved.

PHYSICAL PROBLEMS

Interventional techniques for


pain management in
palliative care

nerve blocks can be done in the home or palliative care unit.


When considering more complex blocks or infusion techniques,
performing the procedure is a small part of the total pain
management. Interventions may be needed quite urgently, but
they are rarely an emergency. It should always be possible to
allow a patient time to consider the alternatives. They must be
given all the options by an experienced professional who can
discuss the details of any proposed procedure, likely outcomes
and possible adverse effects.

Karen H Simpson

General principles of nerve blocking and ITDD

Abstract
Pain can usually be managed using conventional oral analgesics and
co-analgesics according to the WHO analgesic ladder. However, about
10% of patients have pain that is more difficult and they may benefit
from interventions, such as nerve blocks, intrathecal drug delivery
(ITDD) or percutaneous cordotomy. Early referral for specialist pain
management is needed if interventional techniques are being considered.
It is important to manage pain with the simplest methods possible and to
consider all available alternatives to an invasive technique. Simple nerve
blocks may be easy to organize and are usually readily accepted by the
patient. More complex nerve blocks may need hospital admission, radiological imaging and coordinated aftercare. ITDD is a demanding technique
that requires an experienced multidisciplinary pain team and good care in
the community; this must be established before any intervention is
considered. Cordotomy in selected patients is excellent, but requires
specialist expertise; it is best provided by a few centres that treat enough
patients to retain the necessary competencies.

It is best to start with simple peripheral nerve blocks and progress to more complex regional blocks based on general principles
(Table 1). If the pain is widespread, or disease is progressing
rapidly, simple blocks are unlikely to produce long-term benefit.
It may be better to perform a more definitive initial procedure,
rather than put the patient through multiple blocks. About 1e2%
of patients are suitable for spinal drug delivery. Drugs can be
given spinally, either as single injections (epidurally or intrathecally), as a single dose of intrathecal neurolytic, or by external
or internal spinal infusions. Single doses of epidural local
anaesthetic and corticosteroid may help with nerve root pain and
pain from vertebral collapse. Intrathecal neurolysis may help
perineal pain or tenesmus but does carry risks, so careful patient
selection is essential. More complex pain problems are probably
better served by ITDD. Pain in the head may be helped by
intracerebroventricular drug delivery. There are some general
indications and contraindications to interventional techniques
(Table 2); cancer pain is often complex and each case should be
considered individually.

Keywords cancer; intrathecal drug delivery; nerve blocks; pain;


palliative care

Nerve blocks
Pain is one of the most feared and common symptoms of cancer
and other life-limiting diseases. Pain can usually be well
managed using conventional oral analgesics and co-analgesics
according to the WHO analgesic ladder. About 10% of patients
have pain that is more difficult to manage; they may benefit from
interventions such as nerve blocks, intrathecal drug delivery
(ITDD) or percutaneous cordotomy.
Pain in cancer can be from:
 the cancer
 cancer treatments (e.g. neuropathy, surgery)
 general debility (myofascial pain, pressure sores)
 other illness (e.g. shingles).
Nerve blocks or ITTD may be appropriate and effective in some
patients with cancer pain (e.g. a coeliac plexus block has an 80%
success rate). If these are being considered, a senior member of
the patients medical team should contact the pain team early to
discuss the patients medical history, relevant investigations and
any psychosocial issues. The primary and palliative care teams
and other treating consultants often need to be involved. Simple

Simple nerve blocks and injections can provide excellent symptomatic relief with minimal discomfort and risk for the patient
(e.g. trigger point and joint injections). Many of these techniques
can be learned easily and undertaken by a variety of clinicians.
Sometimes, repeated blocks with local anaesthetic, with or

General principles of nerve blocks and intrathecal drug


delivery
C
C
C
C

C
C

Karen H Simpson FRCA FFPMRCA is a Consultant in Pain Medicine at the


Pain Management Service, Leeds Teaching Hospitals, Leeds, UK. She is
Honorary Consultant at St Gemmas Hospice, Leeds, and a founding
member of the Pallium at Leeds Research Group. Competing interests:
none declared.

MEDICINE 39:11

Pain must be carefully assessed and investigated


Careful explanation and informed consent
Patients and carers must be given time to consider interventions
Those involved in the patients care must understand the
procedure, what it can achieve, aftercare, and beneficial and
adverse effects
Nerve blocks must not cause functional defects
Neuro-destructive procedures must be selective of sensory or
autonomic nerves and leave motor paths and sphincters intact
Nerve blocks should not be regarded as a treatment in isolation
but must form part of a strategy for analgesia
Nerve blocks must not be left as a last resort when the patient
may be too ill to tolerate the technique or to come to a hospital
for complex procedures

Table 1

645

2011 Elsevier Ltd. All rights reserved.

PHYSICAL PROBLEMS

have the facility for patients to self-administer small boluses


spinally; this can be of great benefit. The success of ITDD
depends on education of patients and healthcare professionals.
Detailed explanation of the benefits and burdens of ITDD is
required before patients can take the decision to embark upon
this treatment. It is important that patient, carer and staff
expectations are realistic. All spinal systems should be cared for
according to strict local guidelines to optimize analgesia and
minimize adverse events. Good community support is essential
as the majority of care should be provided at home.

Indications for and contraindications to nerve blocks,


intrathecal drug delivery or cordotomy
Indications
C

C
C
C

C
C

Pain despite optimal therapies and attention to psychosocial/


spiritual issues
Effective oral analgesia but intolerable adverse effects
Limited time for oral drug titration
Conditions that readily respond to nerve blocks (e.g. ischaemic
legs, arthritic joints)
Somatic pain confined to a few dermatomes (e.g. radicular limb
pain)
Unilateral torso and leg pain for cordotomy
Autonomic nerve involvement (e.g. visceral pain, intractable
angina)

Drug-related complications include:


Sedation
Nausea/vomiting
Urinary retention
Generalized pruritus
Respiratory depression
Hyperalgesia with high doses
Myoclonus
Tolerance/dose escalation (this
progression)
Neuro-endocrine suppression
Neuropsychiatric problems

Contraindications
C
C
C

C
C

Lack of capacity to make an informed choice


Physical frailty
Unable to sustain suitable position while the intervention is
performed and too ill for sedation
Uncorrectable coagulopathy
Risk of infection and/or delayed healing (e.g. local or systemic
sepsis, especially where an indwelling system is under
consideration)
Impending spinal cord compression or raised intracranial pressure, where a spinal block is being considered
Respiratory insufficiency if cordotomy being considered

reflect

disease

Non-drug-related problems include:


Infection (e.g. catheter track or pump pocket, epidural
abscess, meningitis or systemic sepsis)
Cerebrospinal fluid leak (headache)
Haematoma (local or intraspinal)
Fibrosis or granuloma at catheter tip (may lead to cord
compression)
Catheter migration, fracture, leak, occlusion
Mechanical problems with the pump (e.g. rotor arm stalling)
Drug prescription/refill errors (may lead to drug withdrawal
or overdose)
Pump programming errors (may lead to drug withdrawal or
overdose)

Table 2

without corticosteroid, produce analgesia far in excess of the


expected duration of the block. Botulinum toxin can be used for
some muscle trigger-point injections and for spasticity; it may
produce about 3e4 months of benefit and can be repeated.
Minimal aftercare is usually needed following these simple
procedures. A variety of regional nerve blocks (e.g. intercostal
block, lumbar plexus block or sympathectomy) allow interruption of individual nerves, plexuses or ganglia and can be used for
managing cancer pain. These are more technically demanding
than peripheral nerve blocks and joint injections. They require
more support to perform, such as the use of peripheral nerve
stimulators, fluoroscopy or ultrasound during the block. They
may have more serious potential complications.

Cordotomy
Patients with severe unilateral pain from the torso or lower limbs
may benefit from percutaneous cordotomy. The anterolateral
spinothalamic tract is ablated by radiofrequency lesioning under
fluoroscopy to produce contralateral loss of pain and temperature
sensation. About 90% patients gain significant analgesia that is
often long lasting; 50% of those surviving at 12 months still have
benefit. Contraindications include coagulopathy and significant
respiratory compromise. There are several possible complications, such as respiratory depression (sleep apnoea) and later
dysaesthetic pain (anaesthesia dolorosa).

Intrathecal drug delivery (ITDD)


ITDD from either external or fully implanted systems provides
better pain control and fewer complications than epidural drug
administration. However external systems should usually only
be used in terminal care. When compared with epidural drug
delivery, ITDD has fewer catheter problems, smaller dose
requirement and fewer adverse effects; it gives better pain
control at no increased risk of infection. ITDD should be
considered only when simpler, safer and more economical
methods have been tried and failed. Fewer than 2% of patients
with pain from cancer are candidates. Careful selection of
patient, drug (opioids, local anaesthetics, clonidine, baclofen or
ziconotide) and system is important. Some implantable systems

MEDICINE 39:11

may

Practical issues after nerve blocks, ITDD and cordotomy


Patients taking high-dose opioids before any procedure are at risk
of opioid toxicity afterwards. The opioid dose should be significantly reduced (usually by at least 50%) immediately before and
after the procedure. Colleagues in primary care need to be
involved in the patients continuing care. For patients who live at
a distance, discharge planning is even more complex and
important. Pain management teams must make sure that they are

646

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PHYSICAL PROBLEMS

Meeuse JJ, Vervest AC, van der Hoeven JH, Reyners AK. Five-year follow-up
of cordotomy. Pain Res Manag 2008 NoveDec; 13: 506e10.
Mehio AK, Shah SK. Alleviating head and neck pain. Otolaryngol Clin
North Am. 2009 Feb; 42: 143e59.
Myers J, Chan V, Jarvis V, Walker-Dilks C. Intraspinal techniques for pain
management in cancer patients: a systematic review. Support Care
Cancer 2010 Feb; 18: 137e49.
Smith HS, Deer TR, Staats PS, Singh V, Sehgal N, Cordner H. Intrathecal
drug delivery. Pain Physician 2008 Mar; 11(2 suppl): S89e104.
Simpson KH, Jones I. Intrathecal drug delivery for management of cancer
and non-cancer pain. J Opioid Manag 2008 SepeOct; 4: 293e304.
Zuurmond WW, Perez RS, Loer SA. Role of cervical cordotomy and other
neurolytic procedures in thoracic cancer pain. Curr Opin Support
Palliat Care 2010 Mar; 4: 6e10.

available to support patients and healthcare professionals after


all interventional techniques.
A

FURTHER READING
Erdine S. Neurolytic blocks: when, how, why. Agri 2009 Oct; 21: 133e40.
Erdek MA, Halpert DE, Gonzalez Fernandez M, Cohen SP. Assessment of celiac
plexus block and neurolysis outcomes and technique in the management
of refractory visceral cancer pain. Pain Med 2010 Jan; 11: 92e100.
Fitzgibbon D. Interventional procedures for cancer pain management:
selecting the right procedure at the right time. J Support Oncol 2010
MareApr; 8: 60e1.
Joshi M, Chambers WA. Pain relief in palliative care: a focus on interventional pain management. Expert Rev Neurother 2010 May; 10: 747e56.

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PHYSICAL PROBLEMS

 what is the likely mechanism?


 what are the likely receptors involved?
It is important to remember that there may be more than one
mechanism involved and to take account of this in the
management of the symptoms.
One other key feature of management involves identifying
potentially reversible causes of nausea and vomiting. Assessment
of patients with advanced disease will involve a careful history
focusing particularly on drugs (especially newly introduced
drugs, including recent chemotherapy), the timing of vomiting,
the presence of gastric discomfort and dyspepsia, recent bowel
movements (constipation or obstruction), and neurological
symptoms, especially headache or confusion.
A careful examination should focus on and include:
 an examination of the mouth and pharynx (oropharyngeal
thrush)
 palpation for hepatomegaly or other intra-abdominal
masses
 noting any distension and listening for bowel sounds
 a rectal examination (this will usually be indicated)
 a neurological examination (if there is any suspicion of
vestibular or cerebral involvement, this might look for
focal neurological signs and test vestibular function).
A limited number of investigations might be useful:
 full blood count (consider if infection likely or recent
chemotherapy)
 urea and electrolytes (dehydration)
 calcium
 liver function
 plain abdominal films (faecal loading in constipation or
fluid levels in intestinal obstruction).
A contrast-enhanced computed tomography (CT) scan of the head
would be indicated if there is a suspicion of raised intracranial
pressure or vestibular involvement. A CT scan of abdomen and
pelvis may delineate progressive disease, obstructive tumours or
lymphadenopathy and should be considered where appropriate.
Common, potentially reversible causes of emesis in patients
with advanced disease are:
 drugs (e.g. opioids, anticholinergics) e stop the drug
where possible
 metabolic (e.g. hypercalcaemia) e reverse the metabolic
abnormality (uraemia, hypercalcaemia)
 fear/anxiety e reassurance; anxiolytics; cognitive behavioural therapy
 gastric irritation e stop irritants (e.g. non-steroidal antiinflammatory drugs); prescribe a proton pump inhibitor
(e.g. omeprazole 20 mg once daily)
 cough e suppress with opiates; consider radiotherapy if
directly tumour-related (e.g. mediastinal lymphadenopathy)
 constipation e aperients; enemata
 oropharyngeal thrush e antifungal medication.

Nausea and vomiting


Paul W Keeley

Abstract
Nausea and vomiting are common problems in palliative care, occurring in
40e70% of patients with advanced incurable disease. They may be
disease- or treatment-related, and require a holistic approach to their
management. Careful assessment of the problem, with a focused history
and a limited range of key investigations, is essential to effective management. Knowledge of the likely receptors involved in this complex phenomenon is vital to ensure the proper pharmacological measures are employed.
Although many of the drugs used have been available for many years,
newer agents have improved the management of some types of nausea
and vomiting (especially surgery-, chemotherapy- and radiotherapyrelated emesis). Non-pharmacological measures, including stenting, laser
and venting gastrostomy, can be considered in selected patients.

Keywords emesis; nausea; palliative care; vomiting

Nausea and vomiting are common in patients with cancer and


other chronic diseases. They may occur because of several
factors, both disease-related and treatment-related. The evidence
base for treatment-related causes of nausea and vomiting
(chemotherapy and radiotherapy) is much greater and more
robust than for disease-related causes.1,2
Nausea and vomiting occur in 40e70% of people with
cancer1,2 and are also common in other chronic conditions such
as hepatitis C3 and inflammatory bowel disease.4 Nausea and
vomiting become more common as disease progresses.
Nausea and vomiting are complex neurological and physical
phenomena involving a range of areas of the central nervous
system and gastrointestinal tract. In palliative and supportive
care, nausea may be due to chemotherapy, especially platinumbased chemotherapy,5 other drugs (opioids, antibiotics),6 or
radiotherapy.7 It may also have disease-related causes, for
example metabolic (hypercalcaemia, uraemia),8 intracranial
(raised intracranial pressure, VIIIth nerve tumours), gastrointestinal (gastric outflow obstruction, hepatomegaly constipation,
bowel obstruction, or ileus), or psychogenic (anticipatory nausea
and vomiting, anxiety, or fear).9
In many cases, nausea will respond to treatment of the underlying cause, for example nausea resulting from metabolic disturbance such as hypercalcaemia. Nausea resulting from emetogenic
drugs, such as opioids, may resolve if the drug is switched.

Assessment
There are two critical clinical questions that should inform any
assessment of nausea and vomiting in patients with advanced
incurable disease:

Management
Pharmacological management
The key to successful pharmacological management is identifying the likely mechanism or mechanisms in order to block the
relevant receptor. Table 1 gives a summary of features and the
relevant receptors involved.

Paul W Keeley MBChB MRCGP is a Consultant in Palliative Medicine at the


Glasgow Royal Infirmary, Glasgow, UK. Competing interests: none
declared.

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PHYSICAL PROBLEMS

Anti-emetic drugs by class, dose, effect and indication


Anti-emetic

Class

Dose (per 24 h)

Main site of action/receptor

Indication

Metoclopramide

Prokinetic

30e80 mg

Gut stasis

Cyclizine

Antihistamine

150 mg

Increases peristalsis in upper gut


Dopamine
Vestibular and vomiting centres
Acetylcholine

Haloperidol

Butyrophenone

1.5e10 mg

Levomepromazine

Phenothiazines

12.5e50 mg

Ondansetron

5-HT3 receptor
antagonist

8e16 mg

Blocks 5-HT3 receptors at cTZ and in gut

Granisetron

5-HT3 receptor
antagonist

1e2 mg

Blocks 5-HT3 receptors at cTZ and in gut

Dexamethasone

Corticosteroid

8e16 mg

Reduces inflammatory oedema,


has an ill-defined non-specific central
anti-emetic effect

Hyoscine
butylbromide

Anticholinergic

60e300 mg

Octreotide

Somatostatin
analogue

250e750 mg

Reduces gastrointestinal secretions


and motility
Acetylcholine
Reduces gut secretions

Blocks dopamine receptors at


chemoreceptor trigger zone (cTZ)
Dopamine
Blocks dopamine and serotonin
Receptors at cTZ

Intestinal obstruction
Vestibular causes (middle ear
infection/VIII tumours)
Chemical/drug causes
Hiccup
Most causes e useful as a
second-line, broad-spectrum
anti-emetic
Nausea and vomiting related to
chemotherapy, radiotherapy
and surgery
Nausea and vomiting related to
chemotherapy, radiotherapy
and surgery
Adjunct in raised intracranial
pressure and chemotherapy-related
nausea and vomiting;
helpful adjunct where cause is unclear
Intestinal obstruction

Intestinal obstruction

Table 1

Commonly used anti-emetics


Metoclopramide: is a prokinetic anti-emetic D2-receptor antagonist and 5-HT4 receptor agonist. Its indications include nausea
and vomiting, particularly in gastrointestinal disorders (e.g.
gastric stasis). Adverse effects of this drug include extrapyramidal effects, restlessness, depression and, rarely, neuroleptic
malignant syndrome.

high. Indications include nausea and vomiting. Caution should


be taken in patients with parkinsonism, hypotension, epilepsy,
hypothyroidism, and myasthenia gravis. Undesirable effects
include sedation and postural hypotension.
Non-pharmacological measures
There are some specific clinical pictures where consideration
should be given to non-pharmacological measures.

Haloperidol: is a D2-receptor dopamine antagonist. Indications


are metabolic and drug causes of nausea and vomiting. It should
be used carefully in patients with Parkinsons disease as it may
increase the sedative effects of other drugs. Adverse effects can
include extrapyramidal effects, tardive dyskinesia with chronic
use, hypothermia, sedation, hypotension and, rarely, neuroleptic
malignant syndrome.

Upper gut tumours: may require endoscopy with stenting or


laser treatment for obstructive tumours; intractable, antiemeticresistant vomiting at the end of life may warrant venting
gastrostomy.
Lower gut tumours: ovarian and other pelvic tumours may
respond to chemo- or radiotherapy; nasogastric tubing should be
considered where appropriate. Alternatively, in selected patients,
colostomy may bypass the obstruction if there is a reasonable
prognosis.

Ondansetron, granisetron and tropisetron: are 5-HT3 receptor


antagonists. Indications include surgery-, chemotherapy- and
radiotherapy-related nausea and undesirable effects include
constipation, flushing and hiccup.

Raised intracranial pressure: may respond to radiotherapy of


the tumour. Other important environmental measures include
avoidance of food smells or unpleasant odours, diversion, and
relaxation. Some patients report benefit from acupuncture
although there is little robust evidence to support its widespread
use.
A

Levomepromazine: is a broad-spectrum anti-emetic that is


widely used as a second- or third-line agent in patients who fail
to respond to other anti-emetics. It is a potent D2-receptor
antagonist, and has activity across most receptors except 5-HT3.
Its broad-spectrum activity means the incidence of sedation is

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PHYSICAL PROBLEMS

REFERENCES
1 Grond S, Zech D, Diefenbach C, et al. Prevalence and pattern of
symptoms in patients with cancer pain: a prospective evaluation of
1635 cancer patients referred to a pain clinic. J Pain Symptom Manage
1994; 9: 372e82.
2 Fainsinger R, Miller MJ, Bruera E, et al. Symptom control during
the last week of life on a palliative care unit. J Palliat Care 1991;
7: 5e11.
3 Riley 3rd TR, Chinchilli VM, Shoemaker M, et al. Is nausea
associated with chronic hepatitis C infection? Am J Gastroenterol 2001;
96: 3356e60.
4 Greenstein AJ, Geller SA, Dreiling DA, et al. Crohns disease of the
colon. IV. Clinical features of Crohns (ileo) colitis. Am J Gastroenterol
1975; 64: 191e9.
5 Grunberg SM, Deuson RR, Mavros P, et al. Incidence of chemotherapyinduced nausea and emesis after modern antiemetics. Cancer 2004;
100: 2261e8.
6 Campora E, Merlini L, Pace M, et al. The incidence of narcotic-induced
emesis. J Pain Symptom Manage 1991; 6: 428e30.
7 Feyer CP, Titlbach OJ, Wilkinson J, et al. Gastrointestinal reactions in
radiotherapy. Supp Care Cancer 1996; 4: 249.
8 Bajorunas DR. Clinical manifestations of cancer-related hypercalcemia.
Semin Oncol 1990; 17: 16e25.
9 Fallowfield LJ. Behavioural interventions and psychological aspects of
care during chemotherapy. Eur J Cancer 1992; 28A: s39e41.

MEDICINE 39:11

Practice points
C

650

Unless, or until, the cause of the vomiting can be treated, give


anti-emetics regularly rather than as required
If emesis limits drug absorption there is little point in giving
drugs orally and a continuous subcutaneous infusion (CSCI) of
drug is to be preferred
Some anti-emetics can be given as suppositories and this is
a useful alternative to CSCIs
Prokinetic drugs may cause a worsening of colic and emesis if
there is an intestinal obstruction
Carefully selected patients may be suitable for corrective
surgery: venting gastrostomy or bypass for upper gastrointestinal (GI) obstruction; palliative colostomy for lower GI
obstruction
Even where surgical approaches are precluded by poor
performance status or other considerations, palliative endoscopic procedures such as stenting or laser treatment of
obstructive tumours may give effective relief
There is some evidence that dexamethasone can act as
a useful adjunct to conventional anti-emetic drugs where the
cause of nausea is unknown

2011 Published by Elsevier Ltd.

PHYSICAL PROBLEMS

Breathlessness in
advanced disease

both words interchangeably, when speaking to patients and carers


it is better to use the more understandable terms breathlessness or
shortness of breath.

Patient experience

Ashique Ahamed

Episodes of breathlessness can be frightening, as patients feel as


if they are drowning or choking to death. The fear of inducing
breathlessness may lead the patient to restrict physical activity
and become chair- or bed-bound, which in turn leads to generalized muscle deconditioning. The three elements contributing to
the sensation of breathlessness are:
 air hunger (unpleasant sensation of the need to breathe,
while being unable to increase ventilation)
 effort of breathing (discomfort and tiredness associated
with breathing)
 chest tightness (feeling of constriction and inability to
breathe in and out).
These different sensations, which may be expressed to greater
extents in certain diseases (e.g. chest tightness in asthma and
chronic obstructive pulmonary disease (COPD), or increased
effort of breathing in neuromuscular diseases), can have separate
underlying pathophysiological mechanisms.

Sam Hjelmeland Ahmedzai

Abstract
Breathlessness is a distressing symptom that arises in many diseases. It
has several pathophysiological causes, involving the interplay between
peripheral and central chemoreceptors, pulmonary and bronchial receptors,
chest wall and diaphragmatic muscles, and cortical processing. Older
people and patients with cachexia are more susceptible to breathlessness
on exertion. Most patients can be assessed by physical examination and
simple investigations including haemoglobin, oxygen saturation, ECG,
and imaging (X-ray and ultrasound). Research has shown that opioid receptors are important in the central medullary chemoreceptors but also in the
cortical areas, and that careful use of opioids can reduce the sensation of
breathlessness without compromising ventilatory control. Benzodiazepines
also reduce breathlessness, probably by their anxiolytic and sedative
actions. The combination of opioid and short-acting benzodiazepine is
especially useful. Nebulized furosemide is a new approach that requires
further research. Oxygen is indicated if the saturation falls, but increased
airflow around the face (e.g. with a fan) can also help. The combination
of helium with oxygen may be more effective than oxygen alone. Noninvasive ventilation may be necessary in severe cases, such as neuromuscular disease. Non-medical approaches, including breathing training and
relaxation, can also help. Infusions of carefully titrated opioid and midazolam can be used in the dying patient, together with an anticholinergic agent
if upper airways secretions are causing death rattle.

Epidemiology
Breathlessness is common in the advanced stages of many
diseases and is common in COPD, heart failure, motor neurone
disease and cancer. In a US study, the terminal stage of COPD
was associated with dyspnoea in 56% of patients, compared
with 32% of a comparable lung cancer group1; a British retrospective survey gave equivalent figures of 76% and 60%.2 In
the cancer population, dyspnoea is not only associated with
primary lung cancer: a Canadian study found that out of 923
cancer out-patients, 46% reported breathlessness but only 4%
had lung cancer and 5.4% had lung metastases.3 Cancers in
which at least 50% of patients reported breathlessness included
lung, head and neck, genito-urinary and breast, as well as
lymphoma.3
In many chronic conditions, dyspnoea becomes increasingly
prevalent and refractory to treatment as the disease progresses.
In hospice patients, rapidly increasing breathlessness has been
found to be a poor prognostic factor.

Keywords benzodiazepines; breathlessness; cancer; chronic obstructive


pulmonary disease; dyspnoea; furosemide; lung cancer; motor neurone
disease; opioids; oxygen; tachypnoea

Definition
Breathlessness is defined as the subjective experience of breathing
discomfort; it comprises qualitatively distinct sensations that vary
in intensity. It arises from interactions among physiological,
psychological, social and environmental factors, and it may induce
secondary physiological and behavioural changes.
The term dyspnoea is a Greek word meaning bad breathing and
means the same as breathlessness. Although this article will use

Pathology and pathogenesis


The common pathophysiological changes that lead to breathlessness are described in Table 1.
The main causes of dyspnoea are:
 increased chemical or neurological drive to breathe
(e.g. by stimulation of chemoreceptors)
 increased work of breathing (e.g. in cardiac failure, pleural
effusion)
 decreased neuromuscular power (e.g. in motor neurone
disease (MND), cachexia).
Often, there is a combination of these factors.
Dyspnoea can be thought of as arising from a mismatch between
incoming afferent impulses from sensory receptors and the
outgoing central motor activity to the thoracic wall muscles and
diaphragm.

Ashique Ahamed Vrach Medicine (St Petersberg, Russia) MRCP is Specialist


Registrar in Palliative Medicine at Sheffield Teaching Hospitals NHS
Foundation Trust, Sheffield, UK. Competing interests: none declared.
Sam Hjelmeland Ahmedzai BSc MBChB FRCP is Head of the Academic Unit
of Supportive Care at the University of Sheffield and Honorary
Consultant Physician, Sheffield Teaching Hospitals NHS Foundation
Trust, Sheffield, UK. Competing interests: none declared.

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PHYSICAL PROBLEMS

blunted hypercapnic ventilatory drive will lead to acute hypercapnic respiratory failure (for therapeutic consequences see below).

Causes of breathlessness in advanced disease


System

Example of pathology

Pulmonary

Airflow obstruction
Reduced lung
compliance

Example of disease

Peripheral receptors: peripheral carotid body receptors respond


primarily to decreased PaO2 but are also sensitive to decreased
arterial pH, respiratory oscillations of PaCO2, increased blood
temperature and chemical stimulants. Hypoxaemia results in the
activation of peripheral chemoreceptors that send afferent
impulses to the brainstem respiratory centres.
The peripheral receptors that are important for the regulation of
breathing and the pathogenesis of dyspnoea also include the
mechanical stretch receptors in the chest wall and diaphragm
muscles, stretch receptors in the airways, and j-receptors in the lung
parenchyma. These send afferent signals to the brain about the
ability of the respiratory pump and the lungs to provide the
necessary ventilation for the current level of activity.4 In COPD,
there is hyperinflation and reduced compliance of the lungs and
these contribute to the reduced exercise tolerance and dyspnoea on
exertion.8 The j-receptors are stimulated by increased pulmonary
pressure and fluid, for example, in patients with pulmonary
embolism or heart failure.
A further set of receptors has recently been found to be relevant in situations of chronic dyspnoea, namely the ergoreceptors
(or metaboreceptors).4 These detect lactate and other metabolic
by-products and can provoke breathlessness on minimal exertion, especially in the presence of muscular deconditioning.

COPD, asthma, cancer


Pulmonary fibrosis,
emphysema, pulmonary
consolidation
Pleural effusion
Cancer, heart failure
Chest wall restriction
Neuromuscular disease,
mesothelioma
Diaphragmatic restriction Ascites
Ventilation perfusion
Pulmonary embolism
mis-matching
Cachexia affecting
Cancer, COPD,
respiratory musculature heart failure
Cardiovascular Pump failure
Acute or chronic
heart failure
Pericardial effusion
Cancer
Hypovolaemia
Bleeding, too rapid
drainage of ascites
Systemic
Anaemia
Chronic disease, cancer
Biological effects
See Table 2
of ageing

COPD, chronic obstructive pulmonary disease.

Table 1

Other factors: there is a clear relation between breathlessness


and anxiety; for some patients, the sensory and affective
dimensions of, and triggers for, dyspnoea can as be important as
physical disease.8 Ageing is associated with anatomical and
functional changes that lead to dyspnoea (Table 2).

Chemical and neurological drives


The chemical drivers controlling normal respiration are the
response to hypercapnia and hypoxia:
 hypercapnia exerts its effect via increased PaCO2, which is
detected primarily in the medullary chemoreceptors (and
partially in carotid bodies)
 hypoxia is detected in the carotid bodies.

Diagnosis
Breathlessness is readily apparent when it is severe and the patient
is panicking. However, it is important to distinguish breathlessness
from other types of abnormal breathing pattern, especially
tachypnoea associated with increased metabolic rate, such as
occurs with fever, air hunger associated with metabolic acidosis
(e.g. diabetic ketosis), hyperventilation associated with panic
disorders, and CheyneeStokes respiration (when periods of
increased and laboured breathing alternate with periods of hypopnoea or even apnoea).
It is helpful to ask the patient to rate the severity of breathlessness using a recordable scale. Most patients with normal cognitive

Central receptors: in healthy people, the drive in response to


hypercapnia is more sensitive than that to hypoxia. However,
hypercapnic drive may be blunted in patients with long-standing
ventilatory failure, due to advanced COPD or MND.
Recent neurovascular imaging techniques have shed light on
how ventilatory drive is processed in conscious and subconscious
parts of the brain.5 Air hunger is correlated with increased blood
flow in the mesencephalic and hypothalamic areas, in the limbic and
paralimbic areas (amygdala), and in motor areas and the insula.
Opioid receptors in some of these areas are probably involved in
sensation of dyspnoea, as well as in the regulation of normal
breathing. There is evidence that endogenous opioids such as betaendorphin may be involved in the response to exercise in COPD
patients, as the use of naloxone causes an increase in exerciserelated dyspnoea.6 Many opioid drugs initially cause dose-related
depression of ventilatory frequency (bradypnoea) and, later, of
minute volume. Recent studies have demonstrated that when
opioids are used carefully and titrated against the level of dyspnoea,
even when respiratory rate falls there is no significant ventilatory
compromise.7 The danger arises when opioid drugs are given in
excessive doses relative to the patients needs or are being abused;
there is then a risk that reduced ventilation in the presence of

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Effects of ageing that increase dyspnoea


C
C
C
C
C
C
C
C

Decrease in lung elasticity


Decreased respiratory muscle strength
Reduction in forced vital capacity and peak flow rate
Increased air-trapping
Deterioration in gas exchange
Reduction in ventilatory response to hypoxia and hypercapnia
Increased ventilatory response to exercise
Effects of co-morbid disease (e.g. heart failure)

Table 2

652

2011 Elsevier Ltd. All rights reserved.

PHYSICAL PROBLEMS

function can describe the symptom verbally (mild, moderate,


severe) or numerically (0e10, where 10 is the worst shortness of
breath experienced). Visual analogue scales are useful in research,
but not in the clinical setting.
Some aspects of the history are helpful in making a differential
diagnosis, particularly the relationship of dyspnoea to exercise,
position (e.g. orthopnoea with heart failure) and inhalation of
dust or other particles, and the occurrence of paroxysmal dyspnoea with palpitation and fainting (e.g. with pulmonary embolism). However, physical examination and investigations are
usually needed to make a definitive diagnosis. Important features
to look for during the examination include pallor, central
cyanosis, signs of heart failure, bronchospasm, pulmonary
consolidation and pleural effusion.
In mild-to-moderate dyspnoea arising for the first time, it is
helpful to request investigations that will identify pathological
(and treatable) causes. A list of the useful tests is given in Table 3.
Some of these can also be used for monitoring progress.
A rapid bedside test, which is often helpful clinically even
though it usually does not indicate a cause, is pulse oximetry. The
doctor should be aware of the situations when oximetry is less
reliable, when a corroborative test of arterial blood gases (ABG)
should be carried out.9
When a patient presents to the emergency department with
acute severe breathlessness, there is seldom time to perform all
these investigations before embarking on corrective or symptomatic (palliative) treatments. The minimal tests in this situation are:
 blood pressure
 pulse oximetry/ABG
 ECG
 chest X-ray.
If pulmonary embolism is suspected, for example if there is recent
painful leg swelling, urgent computed tomographic-pulmonary
angiography (CT-PA) and peripheral blood flow tests are justified.

It is important to make a differential diagnosis and a consequent list of tests to reduce this as soon as possible (see Tables 1
and 3).

Management
The management plan should be directed, wherever feasible, to
relieving, or eliminating the underlying cause of the breathlessness.
Thus, acute bronchospasm from existing obstructive pulmonary
disease (asthma or COPD) needs bronchodilator (anticholinergic
and/or beta-adrenergic), initially by nebulizer, and possibly corticosteroid therapy. Anaemia causing breathlessness should be treated
with blood transfusion whilst taking care not to provoke heart
failure, especially in the older person with long-standing anaemia.
Antibiotics will help dyspnoea as well as cough in patients with
respiratory infections, even in the advanced stages of disease.
Urgent treatment
In a patient with cancer, the presence of pulmonary, pleural or
pericardial disease causing acute dyspnoea can be a medical
emergency and palliative oncological measures should be instituted
with minimal delay. With a cancer patient, referral to the patients
oncologist (or the original chest physician if an oncologist has not
previously been involved) is mandatory. Even in patients with poor
performance status, thoracocentesis, a single fraction of radiotherapy, or the placement of an airways stent may give rapid
relief.10
Patients with cancer and suspected or proven upper airways
obstruction or lymphangitis carcinomatosa can be treated with
high-dose corticosteroid (dexamethasone 16 mg per day) while
waiting for an oncologist or a palliative procedure such as an
airways stent. The dosage of corticosteroid should be tapered
after 5e7 days.
Other causes of severe acute dyspnoea, including pulmonary
embolism, pneumothorax, aspiration pneumonia or cardiac
failure, should be considered.
Oxygen therapy
Patients who have significant (<90%) oxygen desaturation at
rest or on exertion should be offered oxygen, preferably via nasal
cannulae unless high flow rates (>6 litres/minute) are required.
There is little evidence for supplementary oxygen in patients with
saturations greater than 90%, unless they are anaemic.11 It is
also important not to give too high a flow rate of oxygen to the
patient with advanced COPD who may be at risk of hypercapnic
respiratory failure. In severe dyspnoea associated with cancer or
COPD, a mixture of helium with oxygen (heliox) can give
quicker and greater relief of dyspnoea than oxygen alone, owing
to the improved flow characteristics of helium gas.12
Part of the benefit of oxygen therapy is derived from the
increased airflow past the nose, mouth and anterior part of the
face. It has been shown that passing cold air over these areas by
itself can reduce the sensation of breathlessness.13 Thus,
providing the patient with a bedside fan and allowing air circulation by opening windows, if possible, can provide simple
additional benefit.14

Useful investigations for the diagnosis and monitoring


of breathlessness
Imaging
C
Chest X-ray
C
CT scan
C
Ultrasound scanning (for pleural or pericardial fluid)
C
CT-PA or V/Q scan (to diagnose pulmonary embolism)
Blood tests
C
Haemoglobin
C
B-type natriuretic peptide (to exclude cardiac element)
Functional
C
Pulmonary function tests (FEV1, FVC to diagnose fixed or
reversible airflow obstruction; TLCO or KCO to identify gas
exchange problem)
C
Flow volume loop (to detect upper airways obstruction)
C
Exercise testing (6-minute walk; shuttle walking test)
FEV1, forced expiratory volume in 1 second; FVC, forced vital capacity;
PA, pulmonary angiography; TLCO, carbon monoxide transfer factor.

Drug management
It is essential to first treat reversible causes of dyspnoea
(e.g. diuretics for heart failure, bronchodilators and

Table 3

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2011 Elsevier Ltd. All rights reserved.

PHYSICAL PROBLEMS

For patients already taking opioids it is advisable to offer as


required doses of 25e50% greater than are already being used for
breakthrough pain. For both naive and opioid-tolerant patients,
regular long-term treatment is associated with troublesome adverse
effects, notably constipation and sedation.18,19 For this reason, and
also because for many patients dyspnoea is episodic and often
predictable, as required dosing may be as effective as regular
dosing.
Although opioid receptors are found in the airways the
systematic review concluded that nebulized opioids are no more
effective than those given by other routes.17
The greatest barrier to using opioids for dyspnoea is fear of
respiratory depression. It has been shown that lower doses of
opioids, used judiciously by careful titration against symptom level
can reduce the sensation without initiating hypercapnic ventilatory
depression.7
Even when used carefully, opioids do reduce respiratory rate,
although tidal volume is initially maintained so that minute
ventilation does not suffer. Thus, a reduced respiratory rate per se
is not an indication of serious opioid toxicity in this situation. The
only indications for the use of naloxone to reverse the effect of
opioid are if SaO2 falls to less than 90% (depending on age and
previous respiratory disease) and there is accompanying evidence
of raised PaCO2, or if the patient becomes unrousable. Even if
reversal is necessary because of significant respiratory depression,
the doctor performing it should be prepared to deal with the
sudden increase in dyspnoea and pain.

Actions of main drug classes used to palliate


breathlessness
Action

Relief of dyspnoea at
cerebral level
Improved exercise
tolerance
Reduced ventilatory
response to hypercapnia
Reduction in anxiety
Sedation
Pain relief
Reduction of cough
Reduction of pre-load
in left ventricular failure
U, drug action;

Drug class
Opioid

Benzodiazepine

?
U
U
U
U

U
U
?

, no drug action; ?, possible action.

Table 4

corticosteroids for airflow obstruction, antibiotics for infection).


The main classes of symptomatic drug treatments for breathlessness are benzodiazepines and opioids. Phenothiazines have
been shown in some clinical trials to have symptomatic benefit
but there is little support for their use, partly because of their
adverse effects.15

Nebulized furosemide: nebulized furosemide is thought to work


by stimulating lung airways stretch receptors and possibly
parenchymal j-receptors to modulate afferent signalling to the
brain.20 The dose needed is 20e40 mg, which by this route is too
low to cause diuresis. A recent review of studies on the use of
nebulized furosemide for dyspnoea found that, in cancer patients, it
relieved the sensation of dyspnoea even though there was no
reduction in the objective measures such as ABG, SaO2, respiratory
rate or heart rate.21

Benzodiazepines: there is little evidence that benzodiazepines


modify the sensation of breathlessness but they are useful when
anxiety is associated with the dyspnoea, especially when this
manifests as panic attacks (see Table 4). Shorter-acting drugs
such as lorazepam are preferred, as patients can be taught to take
0.5e1 mg (half or one tablet) sublingually (unlicensed usage).
One study suggested that a combination of benzodiazepine and
morphine gave the best reduction of dyspnoea with the fewest
adverse effects.16 For patients who are experiencing severe
episodes (e.g. with terminal disease from upper airways
obstruction, lymphangitis or pericardial tamponade) subcutaneous injections or a continuous subcutaneous infusion of midazolam is very helpful. The initial dose of 2.5 mg should be
started immediately and gradually titrated upwards, daily or
more frequently, to reduce panic without causing undue sedation. Diazepam is not commonly used because of its prolonged
half-life.

Non-drug approaches
It is important to consider non-drug approaches to manage
breathlessness. Exacerbations of COPD can be managed with noninvasive assisted ventilation; this is also helpful for many patients
with chronic respiratory muscle failure, as in MND.22 Some patients
respond well to structured relaxation training. Patients with earlier
stages of COPD respond well to programmes of pulmonary rehabilitation, which can reduce dyspnoea as well as increase exercise
ability. Other techniques that can be helpful include breathing
control, exploring coping strategies, pacing and goal-setting.23 The
evidence supporting acupuncture for dyspnoea is inconsistent. A

Opioids: several studies and a Cochrane systematic review


have shown the benefit of opioids in managing breathlessness
in patients with cancer, COPD and heart failure17,18 (see
Table 4). Opioids also reduce pain that may be restricting chest
wall movement, and may off-load the heart in left ventricular
failure. Morphine is the most commonly used opioid, and is
given in initial small doses (5 mg orally or 2.5 mg subcutaneously) in the opioid-naive patient. This can be repeated 2e4
hourly as necessary and titrated up on a daily basis as symptoms dictate.

MEDICINE 39:11

REFERENCES
1 Claessens MT, Lynn J, Zhong Z, et al. Dying with lung cancer or chronic
obstructive pulmonary disease: insights from SUPPORT. Study to
understand prognoses and preferences for outcomes and risks of
treatments. J Am Geriatr Soc 2000; 48(suppl 5): S146e53.
2 Edmonds P, Karlsen S, Khan S, Addington-Hall J. A comparison
of the palliative care needs of patients dying from chronic

654

2011 Elsevier Ltd. All rights reserved.

PHYSICAL PROBLEMS

9
10

11

12

13

14

15

respiratory diseases and lung cancer. Palliat Med 2001; 15:


287e95.
Dudgeon DJ, Kristjanson L, Sloan JA, Lertzman M, Clement K. Dyspnea
in cancer patients: prevalence and associated factors. J Pain
Symptom Manage 2001; 21: 95e102.
Gillette MA, Schwartzstein RM. Mechanisms of dyspnoea. In:
Ahmedzai SH, Muers M, eds. Supportive care in respiratory disease.
Oxford: OUP, 2005.
Parsons LM, Egan G, Liotti M, et al. Neuroimaging evidence implicating cerebellum in the experience of hypercapnia and hunger for
air. Proc Natl Acad Sci U S A 2001; 4: 2041e6.
Mahler DA, Murray JA, Waterman LA, et al. Endogenous opioids
modify dyspnoea during treadmill exercise in patients with COPD.
Eur Respir J 2009; 33: 771e7.
Clemens KE, Klaschik E. Symptomatic therapy of dyspnoea with
strong opioids and its effect on ventilation in palliative care patients.
J Pain Symptom Manage 2007; 33: 473e81.
Rock LLK, Schwartzstein RM. Mechanisms of dyspnea in
chronic lung disease. Curr Opin Support Palliat Care 2007; 1:
102e8.
Vora VA, Ahmedzai SH. Pulse oximetry in supportive and palliative
care. Support Care Cancer 2004; 12: 758e61.
Chard J, Hoskin P, Ahmedzai SH. Assessment and management of
respiratory symptoms of malignant disease. In: Ahmedzai SH,
Baldwin D, Currow C, eds. Supportive care in respiratory disease.
2nd edn. Oxford: OUP, in press.
Booth S, Anderson H, Swannick M, Wade R, Kite S, Johnson M. The
use of oxygen in the palliation of breathlessness. Respir Med 2004;
98: 66e77.
Ahmedzai SH, Laude E, Robertson A, Troy G, Vora V. A double-blind,
randomised, controlled Phase II trial of Heliox28 gas mixture in lung
cancer patients with dyspnoea on exertion. Br J Cancer 2004; 90:
366e71.
Schwartzstein RM, Lahive K, Pope A, Weinberger SE, Weiss JW. Cold
facial stimulation reduces breathlessness induced in normal subjects.
Am Rev Respir Dis 1987; 136: 58e61.
Galbraith S, Fagan P, Perkins P, Lynch A, Booth S. Does the use of
a handheld fan improve chronic dyspnea? A randomized,
controlled, crossover trial. J Pain Symptom Manage 2010; 39:
831e8.
Simon ST, Bausewein C. Management of refractory breathlessness in
patients with advanced cancer. Wien Med Wochenschr 2009; 159:
591e8.

MEDICINE 39:11

16 Navigante AH, Cerchietti LC, Castro MA, Lutteral MA, Cabalar ME.
Midazolam as adjunct therapy to morphine in the alleviation of
severe dyspnea perception in patients with advanced cancer. J Pain
Symptom Manage 2006; 31: 38e47.
17 Jennings A-L, Davies AN, Higgins JPT, Gibbs JSR, Broadley KE.
A systematic review of the use of opioids in the management of
dyspnoea. Thorax 2002; 57: 939e44.
18 Abernethy AP, Currow DC, Frith P, Fazekas BS. Randomised, double
blind, placebo controlled crossover trial of sustained release morphine
for the management of refractory dyspnoea. Br Med J 2003; 327: 523e8.
19 Poole PJ, Vele AG, Black PN. The effect of sustained-release morphine
on breathlessness and quality of life in severe chronic obstructive
pulmonary disease. Am J Respir Crit Care Med 1998; 157: 1877e80.
20 Shimoyama N, Shimoyama M. Nebulized furosemide as a novel
treatment for dyspnea in terminal cancer patients. J Pain Symptom
Manage 2002; 23: 73e6.
21 Newton OJ, Davidson PM, Macdonald P, Ollerton R, Krum H. Nebulized
furosemide for the management of dyspnea: does the evidence support
its use? J Pain Symptom Manage 2008 Oct; 36(4): 424e41.
22 Shneerson J. Neuromuscular and skeletal disorders, and obstructive
sleep apnoea. In: Ahmedzai SH, Baldwin D, Currow C, eds. Supportive
care in respiratory disease. 2nd edn. Oxford: OUP, in press.
23 MacLeod R. Psychosocial therapies. In: Ahmedzai SH, Muers M, eds.
Supportive care in respiratory disease. Oxford: OUP, 2005.

Practice points
C

655

Breathlessness is very common in chronic malignant and noncancer conditions


History, clinical examination and selected investigations are
important
Therapy should initially be directed, wherever possible, to
reducing or eliminating the underlying cause
Non-drug approaches can be useful for some patients in
earlier stages
Oxygen and heliumeoxygen mixtures should be reserved for
those who have significant desaturation
Drugs that can palliate breathlessness and/or associated
anxiety include benzodiazepines and opioids
The noise of respiratory secretions in the dying patient can be
reduced using anticholinergics

2011 Elsevier Ltd. All rights reserved.

PHYSICAL PROBLEMS

Psychiatric conditions in
palliative medicine

families, and make interpretation of pain and other symptoms


extremely difficult.2 Delirium is observed in approximately 1 in 5
general hospital admissions and up to 85% of patients with
terminal illness.3
Delirium is primarily a disorder of arousal and cognition.4 It is
associated with disturbances of consciousness, attention,
thinking, perception, memory, psychomotor behaviour, emotion
and the sleep-wake cycle. Other features include disorientation,
acute onset and fluctuating symptomatology.5
Several screening tools are available to help diagnose cognitive impairment (e.g. mini-mental state examination) and
delirium (e.g. memorial delirium assessment scale).6e9
Management of delirium involves determining the aetiology,
correcting causative factors and treating the symptoms. The
aetiology is often multifactorial,10 and a cause is found in less
than 50% of terminally ill patients.11 A full history and examination should look for evidence of infection, hypoxia, dehydration and major organ failure. The continuation of medications
that may have precipitated or contributed (e.g. opioids, psychoactive medications, sedation, anticholinergics and corticosteroids) should be reviewed.12,13 A full blood count and serum
electrolytes, urea, creatinine and calcium should be checked.
Brain imaging or assessment of cerebrospinal fluid may be
appropriate. The appropriateness of investigation is guided by
the patients condition, prognosis, practical constraints, invasiveness of investigations, and by the nature of any possible
treatments. Treatment should be simple, effective and carry
minimal risk of causing further distress.5
In some patients symptomatic and supportive therapies alone
may be appropriate. These include fluid and electrolyte management, orientating the patient, familiarizing the environment,
educating and employing the help of family, and one-to-one
nursing if required. Pharmacological interventions are often
required in addition. The main agents used are neuroleptics and
benzodiazepines. Low-dose haloperidol and chlorpromazine are
effective, although newer atypical neuroleptics (e.g. risperidone,
olanzapine) have a lower risk of extrapyramidal effects.5,14
Delirium in the final 24e48 hours of life is often referred to as
terminal restlessness or agitation and may be irreversible.15
Reversible causes (e.g. urinary retention, faecal impaction)
should be excluded. Symptom management in this phase often
requires parenteral sedation using, either singly or in combination, neuroleptics and benzodiazepines.16 Family should be
reassured that sedation is to provide comfort and symptom
control and not to hasten death. As in any patient with delirium,
regular reassessment is necessary as the symptoms of delirium
can fluctuate over time.5

Damien J McMullan
Emma Lundy
Clare White
Neil Jackson

Abstract
Psychiatric conditions are common among patients with advanced illness
who are referred to palliative care services. Psychiatric illness can cause
considerable distress to both patients and their families. In order to
improve end-of-life care for patients, it is necessary to diagnose psychiatric
conditions and treat them appropriately. This review considers delirium,
dementia, depression, anxiety, and suicidal ideation. It considers the prevalence, aetiology, diagnosis and management of these conditions.

Keywords anxiety; delirium; depression; palliative; psychiatry; suicide

Introduction
Psychiatric conditions are common among those with advanced,
life-limiting illnesses. This review considers some of the conditions
that palliative care patients may experience e cognitive impairment,
delirium, dementia, depression, anxiety, and suicidal ideation.

Cognitive impairment
Pereira and colleagues found that the prevalence of cognitive
impairment among inpatients with cancer was 44%, rising to
68% just prior to death.1 Cognitive impairment may occur on the
basis of pre-existing dementia or a delirium, which are considered in turn below.

Delirium
Delirium occurs commonly in the context of palliative care,
where it is likely to cause distress for patients, carers and

Damien J McMullan MRCP is an ST5 trainee in Palliative Medicine in the


Northern Ireland Postgraduate Medical Training scheme at Belfast
City Hospital, Northern Ireland. Conflict of interest: none.
Emma Lundy MRCGP is a LAT in Palliative Medicine in the Northern
Ireland Postgraduate Medical Training scheme at Northern Ireland
Hospice, Belfast, Northern Ireland. Conflict of interest: none.

Dementia
Dementia is a disorder of cognitive function without diminution
of arousal. As the general population is ageing, the incidence of
patients with pre-existing dementia referred to palliative care is
likely to increase.17 Unfortunately, the palliative care needs of
patients with dementia are often poorly addressed,18 and more
research is needed into guiding appropriate care for these
patients. The diagnosis and management of dementia is not
within the scope of this review, but it is important to highlight
that difficulties with communication due to the patients

Clare White MRCP MD is a Consultant in Palliative Medicine in Northern


Ireland Hospice and Belfast Health and Social Care Trust, Belfast, Northern
Ireland. Conflict of interest: none.
Neil Jackson MRCPsych MMedSci [Psychotherapy] MSc Pall Med is a Consultant in
Palliative Medicine at Belfast Health and Social Care Trust and Northern
Ireland Hospice, Belfast, Northern Ireland. Conflict of interest: none.

MEDICINE 39:11

656

Crown Copyright 2011 Published by Elsevier Ltd. All rights reserved.

PHYSICAL PROBLEMS

impaired cognition can lead to under-treatment of symptoms.19


Symptoms such as pain in the patient with advanced dementia
may manifest as increased confusion or agitation, and be inappropriately treated with sedation instead of analgesics. The
treating team should be aware of this, and have a lower threshold
for prescribing analgesics if the patient could be in pain.
Using the palliative care approach for the needs of
patients with dementia has been recognized, as dementia itself is
a life-limiting diagnosis. This may require the provision of
specialized units with education, outreach and liaison1,17 in
order to afford these patients appropriate end-of-life care.

Anxiety and panic disorders


Significant anxiety symptoms are demonstrable in approximately
25% of patients with cancer.33 Mixed anxiety and depression
symptoms are more prevalent than anxiety alone.34 Among
patients with advanced cancer 3% meet the criteria for generalized anxiety disorder and 5% meet those for panic disorder.35
Anxiety can arise from confronting mortality and loss, living
with complex physical and psychological symptoms, or stem from
a pre-existing anxiety disorder.5 Low levels of anxiety can facilitate
coping, but high levels can intensify distress and hamper functioning. Presentations include autonomic hyperactivity, hypervigilance, worry, apprehension, insomnia, distractibility and somatic
symptoms, including diarrhoea, sweating, palpitations and dyspnoea.19 The overlap between features of the terminal diagnosis and
those of anxiety can result in delays in diagnosis and treatment.
Precipitating and contributing factors for anxiety, including
breathlessness, sepsis, refractory pain, medication, drug withdrawal states, delirium and other psychiatric conditions, should be
established and addressed. Anxiety can be exacerbated by introduction of drugs such phenothiazines, butyrophenones and metoclopramide; or by withdrawal of drugs such as opiates,
corticosteroids, benzodiazepines, nicotine and anticonvulsants.5,19
Most patients with mild-to-moderate anxiety can be treated
effectively with psychotherapeutic interventions.36 These involve
a multidisciplinary approach with input from psychiatry or clinical
psychology as appropriate, and include brief supportive psychotherapy involving both patients and families, relaxation, guided
imagery and hypnosis.5
Higher levels of anxiety often require pharmacological intervention. Benzodiazepines form the mainstay of treatment with
shorter-acting agents being preferable.37 Midazolam subcutaneously is useful when the enteral route is problematic. Antidepressants, particularly SSRIs, are useful when depression is
concomitant and in panic disorder.19 Typical and atypical
neuroleptics can be valuable when other agents fail and when an
organic aetiology is suspected, or when there are psychotic
symptoms. Treatment of possible precipitating causes, such as
dyspnoea, is also important and can be managed effectively with
an opioid and adjunctive midazolam.38

Depression
Depression is common in palliative care patients. In patients with
advanced cancer it is associated with adverse outcomes, such as
increased pain, disability and poorer prognosis.20 Depression is often
under-diagnosed and under-treated21 in this population. While
depressed mood and sadness can be appropriate responses as death
approaches and can be manifestations of anticipatory grief, the
reported prevalence of depression in patients with cancer
ranges from 3% to 38%,22e24 with major depression rates reported
as 7e18%.25 The rate increases with higher levels of disability,
advanced illness and pain.
Recognized criteria can be used for diagnosing and classifying
depression, such as the Diagnostic and statistical manual of
mental disorders, 4th edition, (DSM-IV) or the International
Classification of Diseases (ICD-10).26,27 However, some somatic
symptomatology such as fatigue or loss of appetite may be
present because of malignancy and can make diagnosis difficult.28 The Hospital Anxiety and Depression Scale (HADS) has
been widely used as a screening instrument for anxiety and
depression in palliative care settings.29,30 The screening questionnaire focuses on symptoms such as anhedonia, psychomotor
agitation or retardation, lack of interest in ones appearance, lack
of concentration and feeling of fear.
Depression in patients with cancer is treatable. Management
involves controlling physical symptoms and using a combination of
supportive psychotherapy, cognitive behavioural therapy techniques, patient and family education, and antidepressant medication.19,25 Antidepressants should be considered when treating
depression in palliative care, but there are too few trials to determine
a first-choice antidepressant for patients with advanced disease.20
Tricyclic antidepressants, selective serotonin reuptake inhibitors
(SSRIs) and psychostimulants are the most common antidepressant
medications used at the end of life. Prognosis plays an important role
in determining the appropriate pharmacotherapy. With several
months of anticipated life expectancy the patient can afford to wait
2e4 weeks to respond to SSRIs or tricyclic antidepressants.5,19 Those
with a shorter prognosis may benefit from a rapidly acting
psychostimulant.31
The multidisciplinary framework of palliative care, supportive
psychotherapy and pastoral counselling can all benefit patients.
Central to managing depression in palliative care is patient and
family involvement in defining appropriate care.19 In patients
who have treatment-resistant depression or suicidal ideation,
consideration should be given to psychiatric referral for specialist
advice and to ECT (electroconvulsive therapy) as a treatment
modality.32

MEDICINE 39:11

Suicide
Studies have found the incidence of suicide in cancer patients to be
greater than that in the general population and that there is an
increased risk in those in advanced stages of illness.5,39 It has been
suggested that suicide may be a rational alternative to enduring
a painful, fatal disease40. One study found that 10 of 44 terminal
patients were suicidal or desired an early death with all 10 suffering
from clinical depression.41 Risk factors for suicide include hopelessness, social isolation, feelings of helplessness or loss of control,
a previous psychiatric history, substance abuse, poor family support
and inadequate symptom control.42 Younger patients are more
likely to report suicidal thoughts. Depression and hopelessness are
the strongest predictors of desire for hastened death among terminally ill patients with cancer.43
Patients experiencing suicidal ideation should be screened and
treated for delirium, depression and other risk factors. Therapeutic
interventions for suicidal ideation include encouraging narrative
life review, psychotherapy (including meaning-based group

657

Crown Copyright 2011 Published by Elsevier Ltd. All rights reserved.

PHYSICAL PROBLEMS

18 Harris D. Forget me not: palliative care for people with dementia.


Postgrad Med J 2007; 83: 362e6.
19 Block SD. Psychological issues in end-of-life care. J Palliat Med 2006;
9: 751e66.
20 Rayner L, Price A, Hotopf M, Higginson IJ. The development of
evidence-based European guidelines on the management
of depression in palliative cancer care. Eur J Cancer 2011; 47(5):
702e12.
21 Irwin SA, Rao S, Bower K, et al. Psychiatric issues in palliative care:
recognition of depression in patients enrolled in hospice care.
J Palliat Med 2008; 11: 158e63.
22 Akechi T, Okuyama T, Sugawara Y, Nakano T, Shima Y, Uchitomi Y.
Major depression, adjustment disorders, and post-traumatic stress
disorder in terminally ill cancer patients: associated and predictive
factors. J Clin Oncol 2004; 22: 1957e65.
23 Hotopf M, Chidgey J, Addington-Hall J, Ly K. Depression in advanced
disease: a systematic review. Part 1. Prevalence and case finding.
Palliat Med 2002; 16: 81e97.
24 Massie MJ. Prevalence of depression in patients with cancer. J Natl
Cancer Inst Monogr 2004; 32: 57e71.
25 Wilson K, Chochinov HMC, Faye BD, Breitbart W. Diagnosis and
management of depression in palliative care. New York: Oxford
University Press, 2009.
26 Diagnostic and statistical manual of mental disorders. 4th edn.
Washington DC: American Psychiatric Association, 1994.
27 WHO. International Statistical Classification of Diseases and
Related Health Problems 10th Revision. World Health Organization,
2007.
28 Block SD. Assessing and managing depression in the terminally ill
patient. ACPeASIM end-of-life care consensus panel. American
College of PhysicianseAmerican Society of Internal Medicine.
Ann Intern Med 2000; 132: 209e18.
29 Holtom N, Barraclough J. Is the Hospital Anxiety and Depression
Scale (HADS) useful in assessing depression in palliative care?
Palliat Med 2000; 14: 219e20.
30 Mitchell AJ, Meader N, Symonds P. Diagnostic validity of the
Hospital Anxiety and Depression Scale (HADS) in cancer
and palliative settings: a meta-analysis. J Affect Disord 2010; 126:
335e48.
31 Breitbart W, Rosenfeld B, Kaim M, Funesti-Esch J. A randomised,
double-blind, placebo-controlled trial of psychostimulants for the
treatment of fatigue in ambulatory patients with
human immunodeficiency virus disease. Arch Intern Med 2001;
161: 411e20.
32 Rasmussen KG, Richardson JW. Electroconvulsive therapy in palliative
care. Am J Hosp Palliat Care 2011; 28(5): 375e7.
33 Derogatis LR, Morrow GR, Fetting J, et al. The prevalence of
psychiatric disorders among cancer patients. JAMA 1983; 249(6):
751e7.
34 Payne D, Massie M. Anxiety in palliative care. New York: Oxford
University Press, 2009.
35 Kadan-Lottick NS, Vanderwerker LC, Block SD, Zhang B,
Prigerson HG. Psychiatric disorders and mental health service use in
patients with advanced cancer: a report from the coping with cancer
study. Cancer 2005; 104: 2872e81.
36 Breitbart W, Jacobsen PB. Psychiatric symptom management in
terminal care. Clin Geriatr Med 1996; 12: 329e47.
37 Hollister LE. Pharmacotherapeutic considerations in anxiety
disorders. J Clin Psychiatry 1986;(suppl 47); 33e6.

psychotherapy and cognitive behavioural), conserving dignity


and facilitating religious expression.5 Patients with active suicidal
ideation should have constant supervision and should be referred
for psychiatric risk assessment.19

Conclusion
Psychiatric conditions are common in the palliative care population. They can cause considerable distress to both patients and
their carers, especially if the diagnosis is not made and appropriate
treatment initiated. If psychiatric morbidity is correctly recognized
and treated, end-of-life care will be improved, both for the patient
and their family.
A

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5 Breitbart W, Chochinov H, Passik S. Psychiatric symptoms in palliative
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6 Williams MA. Delirium/acute confusional states: evaluation devices in
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7 Breitbart W, Rosenfeld B, Roth A, Smith MJ, Cohen K, Passik S.
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8 Bruera E, Franco JJ, Maltoni M, Watanabe S, Suarez-Almazor M.
Changing pattern of agitated impaired mental status in patients with
advanced cancer: association with cognitive monitoring, hydration,
and opioid rotation. J Pain Symptom Manage 1995; 10: 287e91.
9 Fadul N, Kaur G, Zhang T, Palmer JL, Bruera E. Evaluation of the
memorial delirium assessment scale (MDAS) for the screening of
delirium by means of simulated cases by palliative care health
professionals. Support Care Cancer 2007; 15: 1271e6.
10 Gagnon PR. Treatment of delirium in supportive and palliative care.
Curr Opin Support Palliat Care 2008; 2: 60e6.
11 Bruera E, Miller L, McCallion J, Macmillan K, Krefting L, Hanson J.
Cognitive failure in patients with terminal cancer: a prospective study.
J Pain Symptom Manage 1992; 7: 192e5.
12 Lawlor PG, Gagnon B, Mancini IL, et al. Occurrence, causes, and
outcome of delirium in patients with advanced cancer: a prospective
study. Arch Intern Med 2000; 160: 786e94.
13 Tune LE, Egeli S. Acetylcholine and delirium. Dement Geriatr Cogn
Disord 1999; 10: 342e4.
14 Breitbart W, Marotta R, Platt MM, et al. A double-blind trial of haloperidol, chlorpromazine, and lorazepam in the treatment of delirium
in hospitalized AIDS patients. Am J Psychiatry 1996; 153: 231e7.
15 White C, McCann M, Jackson N. First do no harm, terminal restlessness and delirium. J Palliat Med 2007; 10: 345e51.
16 Stiefel F, Fainsinger R, Bruera E. Acute confusional states in patients
with advanced cancer. J Pain Symptom Manage 1992; 7: 94e8.
17 Hughes JC, Robinson L, Volicer L. Specialist palliative care in
dementia. Br Med J 2005; 330: 57e8.

MEDICINE 39:11

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Crown Copyright 2011 Published by Elsevier Ltd. All rights reserved.

PHYSICAL PROBLEMS

38 Navigante AH, Cerchietti LC, Castro MA, Lutteral MA, Cabalar ME.
Midazolam as adjunct therapy to morphine in the alleviation of
severe dyspnea perception in patients with advanced cancer. J Pain
Symptom Manage 2006; 31: 38e47.
39 Alleback P, Bolund C. Suicides and suicide attempts in cancer
patients. Psychol Med 1991; 21: 979e84.
40 Mayland CR, Mason SR. Suicidal intent in the palliative care setting.
J Palliat Care 2004; 20: 119e20.
41 Breitbart W. Suicide in cancer patients. Oncology 1987; 1(2):
49e55.

MEDICINE 39:11

42 Goelitz A. Suicidal ideation at end-of-life: the palliative care teams


role. Palliat Support Care 2003; 1: 275e8.
43 Breitbart W, Rosenfeld B, Pessin H, et al. Depression, hopelessness,
and desire for hastened death in terminally ill patients with cancer.
JAMA 2000; 284: 2907e11.
FURTHER READING
Handbook of psychiatry in palliative medicine. 2nd edn. Oxford University
Press, 2009.
Oxford textbook of palliative medicine. 4th edn. Oxford University Press, 2009.

659

Crown Copyright 2011 Published by Elsevier Ltd. All rights reserved.

PHYSICAL PROBLEMS

Emergencies in palliative
medicine

can avoid the stress of unexpected developments and the need


for urgent clinical decisions. However, it may also increase
anxiety that the event will happen.

Andrew Fowell

Spinal cord compression

Nicholas SA Stuart

The outcome in patients with spinal cord compression is critically dependent on the speed of diagnosis and subsequent
treatment.1 Patients who are ambulant when treated usually
remain so; those who are not seldom recover. Back pain in
a cancer patient requires immediate, careful evaluation, particularly if accompanied by a neurological deficit. Spinal cord
compression occurs particularly in those with cancers that tend
to metastasize to bone; breast, prostate and kidney are the most
common. Compression is usually caused by expansion into the
spinal canal of metastases within the vertebral body or neural
arch. Intradural and intraspinal metastases are rare.

Abstract
During the last phase of life, a patients condition can change suddenly
and require urgent assessment. The most likely reasons for this include
spinal cord compression, shortness of breath, haemorrhage, metabolic
disturbance, fractures and neurological conditions. Appropriate treatment
of these events can make a big difference to how the patient and family
cope and anticipation of potential problems is advocated.

Keywords confusion; emergencies; haemorrhage; hypercalcaemia;


palliative care; spinal cord compression; superior vena caval obstruction

Features: the initial symptom of spinal cord compression is often


localized back pain caused by the underlying metastasis. As the
cord becomes compressed, the pain may become referred to the
dermatome supplied by the adjacent nerve root. Patients then
develop progressive numbness, objective sensory loss, weakness
and, finally, loss of bowel and bladder sensation. Physical
examination may reveal a well-defined sensory level, weakness,
increased or reduced muscle tone, and extensor or absent plantar
responses. Signs may be subtle, however, and their absence does
not exclude significant spinal cord compression.

In palliative care, the definition of what constitutes an emergency


is critical. It is determined largely by the clinical context and less
by the event itself; the onset of signs of spinal cord compression
in an ambulant patient with slowly progressive, end-stage prostate cancer requires immediate attention, whereas the same
event in a patient confined to bed because of general debility
from progressive liver metastases might not constitute an emergency. In every case, the decision of whether to take urgent
action must be based on the:
 patients general condition
 disease and its prognosis
 patients and familys wishes
 burden of any proposed treatment
 distress caused by the symptoms.
The following discussion of what action to take assumes prior
assessment of whether action is appropriate.
Many of the potential emergencies that arise in palliative care
are predictable from the nature and extent of the disease. Early
intervention (when appropriate) can often lead to more effective
treatment. When intervention is considered inappropriate, early
discussion with staff, patient and family of what may lie ahead

Investigations: suspected spinal cord compression requires urgent


investigation. Myelography is now obsolete and computed tomography (CT) has been superseded by magnetic resonance imaging
(MRI), which more accurately defines the spinal anatomy and any
associated pathology (Figure 1).
Management: Comprehensive guidance was issued in 2008 by
the UK National Institute for Health and Clinical Excellence
(NICE).2 This states that all hospitals should have defined
pathways for the investigation and treatment of suspected spinal
cord compression. Immediate management comprises dexamethasone (16 mg) which should be given as soon as the diagnosis is suspected. Radiotherapy is the standard treatment for
spinal cord compression when the spine is stable and death is not
imminent. Radiosensitive tumours warrant treatment, even in
advanced disease. Surgery should be considered in patients with
an unstable spine, in those with progression during radiotherapy,
or in recurrences after radiotherapy. An anterior approach, in
which the diseased vertebral body is removed and the spine
stabilized, gives better results than simple laminectomy.
Following successful surgery, radiotherapy should be considered
to control local symptoms (e.g. pain) and prevent recurrence.
Long-term nursing care may be needed for patients who
become paraplegic. Paraplegia itself is not life-threatening but
does shorten life expectancy; continued care at home may be
possible in some cases, though a determined family and multidisciplinary support are required. Bowel and bladder problems
may be overcome with long-term catheterization and regular use
of stimulant suppositories (e.g. bisacodyl). Pressure-relieving
mattresses and cushions should be used to avoid pressure

Andrew Fowell MRCGP FRCP is Macmillan Consultant for Palliative


Medicine for Betsi Cadwalader University Health Board in Bangor, North
Wales, UK. He qualified from the University of Leeds, trained in general
practice in Bangor and was in partnership in North Yorkshire. His
research interests include provision of palliative care in a rural
community and research methodology in dying patients. Competing
interests: none declared.
Nicholas SA Stuart DM FRCP is Professor of Cancer Studies at the
University of Bangor and Honorary Consultant Medical Oncologist at
Ysbyty Gwynedd, Bangor, UK. He qualified from the University of
Southampton, and trained in oncology in Birmingham and Oxford.
His interests include clinical cancer research in district hospitals.
Competing interests: none declared.

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PHYSICAL PROBLEMS

patients is different from that undertaken when SVCO is the


presenting symptom of malignancy. Initial treatment comprises
intravenous dexamethasone and anticoagulation to prevent
irreversible superior vena caval thrombosis.3 Low-molecularweight heparins allow effective anticoagulation, and are now
preferable to unfractionated heparin or warfarin. Thrombolysis
may be considered when SVCO is associated with extensive
thrombosis, but should not be combined with heparin. Thrombolytics, such as streptokinase, are best given by infusion directly
into the superior vena cava (SVC) via a cannula. Radiotherapy
should be considered in patients not previously treated, but is not
immediately effective. Immediate relief can be achieved by
inserting a stent into the SVC under radiological control in
specialist centres. The safety and ease of such procedures is
improving and, though the devices are expensive, they are the
preferred approach when the expertise is available because of
their immediate effect.

Obstruction of the inferior vena cava


Obstruction of the inferior vena cava presents with swelling of
the legs and genitalia, and may be confused with lymphoedema.
Anticoagulation may be helpful when the obstruction is associated with thrombosis. Radiotherapy can be effective, but the risk
of toxicity is greater than with thoracic radiotherapy for SVCO.
Light compression hosiery may be helpful, and some patients
respond to a combination of furosemide, 40 mg daily, and spironolactone, 100 mg twice daily.

Figure 1 This 58-year-old man presented with weak legs and was subsequently found to have a small primary tumour in his lung. As is commonly
the case, he did not improve after radiotherapy and corticosteroids, but
he was able to continue living at home for several months with an
intensive package of home care.

Haemorrhage

sores. Radiotherapy may halt progression of paraplegia, but is


usually of little benefit beyond pain control once total motor and
sensory loss is established.

Major bleeding: bronchial carcinoma invading the aorta, a neck


tumour surrounding the carotid artery, or malignant nodes in
the axilla or groin may erode a major blood vessel, producing
sudden, terminal haemorrhage. Resuscitation is inappropriate
in such patients; attempts to ligate major blood vessels will be
futile or will lead to limb ischaemia and further distress. Where
it is recognized that this is a terminal event the patient should
be sedated using a benzodiazepine (e.g. midazolam or diazepam, 10 mg slowly and repeat until adequate sedation is
achieved), given intravenously if possible or otherwise intramuscularly; drugs given subcutaneously are poorly absorbed in
circulatory shutdown. Diamorphine should be given to patients
in pain (5 mg in those not already taking an opioid, or the usual
breakthrough pain dose of whatever opioid they are taking).
Family and staff may be distressed by the sight of large amounts
of blood; the use of red or green towels reduces the visual
impact.

Superior vena caval obstruction


Superior vena caval obstruction (SVCO) occurs more commonly
in lung cancer (80% of cases), particularly small cell lung cancer,
and mediastinal lymphoma (3e8% of patients with these
malignancies). SVCO may also be caused by venous thrombosis
and may be precipitated by central venous cannulation; this can
cause diagnostic confusion in a cancer patient with an indwelling
central line (e.g. Hickman line or peripherally inserted central
catheter (PICC line)).
Features: SVCO typically presents with dyspnoea, cough, and
swelling of the face and/or upper chest and arms. Patients may
complain of headache or a sensation of fullness of the head.
Physical examination may show venous distension or oedema in
the upper body, and cyanosis or plethora. Signs and symptoms
are more prominent when the onset is rapid; there may be few
when the onset is slow and collateral channels have developed.
Slow-onset SVCO may cause no significant symptoms, is not
a true emergency and is compatible with long-term survival.
Diagnosis is largely clinical, though chest radiography and CT
may be useful to determine the extent of the disease when active
treatment is considered.

Gastrointestinal bleeding from stomach or bowel tumours may


cause melaena, haematemesis or occult bleeding, with signs of
shock. An early decision must be made about resuscitation and
blood replacement. Local measures (e.g. endoscopic injection of
adrenaline (epinephrine)) may be helpful, and surgical intervention is occasionally indicated.
Other sites: bleeding may occur from fungating lesions in the
skin, bladder, uterus or bronchus. Adrenaline (epinephrine)
1:1000 soaks and haemostatic dressings (e.g. Kaltostat) may help
to control external bleeding. Haemostatic agents (e.g. tranexamic

Management: in palliative care, patients presenting with SVCO


usually have an established diagnosis and have often undergone
previous radiotherapy or chemotherapy. Management of these

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PHYSICAL PROBLEMS

Neurological problems

acid, 500 mge1 g four times daily, ethamsylate, 500 mg four


times daily) can help to reduce blood loss. Tranexamic acid has
not been recommended in renal tract bleeding because it causes
hard clots that may lead to retention of urine, though in practice
this is seldom an issue. Patients with prolonged blood loss may
become anaemic and need blood transfusion. Radiotherapy is
often effective in controlling bleeding, but does not work
immediately; it is therefore inappropriate in patients who are not
expected to survive for long.

Convulsions are distressing and frightening for patient and family.


They can be caused by brain metastases or severe metabolic
disturbances (e.g. hypercalcaemia, hyponatraemia). Localized
brain tumours may cause focal or partial seizures without loss of
consciousness. Patients who have experienced an isolated seizure
do not require anticonvulsants, but must be advised not to drive.
Prolonged or recurrent seizures require treatment. Immediate
midazolam, 5e10 mg subcutaneously (SC) (less if given intravenously), or rectal diazepam is usually quickly effective in stopping
an on-going convulsion. The risk of further seizures is high,
however, and prophylactic anticonvulsants (e.g. phenytoin, 300 mg
daily, sodium valproate, 600 mg daily in divided doses) should be
considered. In patients with continued seizures who are unable to
take oral medication, midazolam, 40e100 mg/24 hours SC via
a syringe-driver, or phenobarbital, 200e600 mg/day, are other
options, and the dosage is titrated against response. Paraldehyde,
5e10 ml by deep intramuscular injection, remains valuable when
other measures have failed.
Confusion is reported in up to 85% of patients with advanced
cancer. Dehydration, infection, hypercalcaemia, uraemia, hyponatraemia, hypoxia, and drugs such as corticosteroids and
morphine can cause confusion. Anxiety and depression may
mimic it. Confusion can be hazardous to both patient and staff
and is distressing to relatives. Immediate treatment is aimed at
removal of the cause; rehydration, oxygen, antibiotics or reduction of drug dosage may be appropriate. Patients should be
nursed in a well-lit, quiet room. The presence of a family member
may be reassuring. Sedation is a last resort, and it is prudent to
involve the family in this decision and to consider seeking
a second opinion. Haloperidol (3e10 mg orally at night) can help
patients suffering hallucinations or paranoid thoughts and the
newer atypical antipsychotics such as risperidone (1 mg orally at
night) are also of use. A single dose of midazolam, 10 mg SC,
sedates most patients sufficiently to start a syringe-driver with
midazolam, 20e30 mg, or levomepromazine, 25e50 mg, over
24 hours, in those in whom continued sedation is needed.

Metabolic disturbances
Hypercalcaemia is the most common metabolic emergency in
oncology and palliative medicine. Overall, about 10% of patients
with malignancy develop hypercalcaemia.4 However, up to 40%
of patients with myeloma or metastatic breast cancer may be
affected at some time in the course of their disease.
Features: hypercalcaemia presents with thirst, polyuria,
anorexia, lethargy, confusion, nausea, vomiting, constipation
and dehydration. Symptoms are non-specific and easily confused
with those of terminal disease progression, but hypercalcaemia
should be suspected in any cancer patient who is unwell. Serum
calcium of more than 2.8 mmol/litre (corrected for albumin
concentration) is abnormal. Dramatic symptomatic improvement
can occur following correction of serum calcium.
Management (Table 1): treatment of hypercalcaemia comprises
rehydration with sodium chloride 0.9% and administration of an
intravenous bisphosphonate (e.g. disodium pamidronate or
zoledronic acid). Following treatment, it is 2e3 days before
serum calcium falls to normal. Higher dose bisphosphonates
have a more rapid, more profound and more prolonged effect
and should be considered in severe hypercalcaemia.
Relapse often occurs after 3e4 weeks, though some patients
suffer only a single episode, and maintenance using regular
monthly infusions should be considered. Third-generation
bisphosphonates (e.g. zoledronic acid) are more potent and can
be administered more rapidly than disodium pamidronate. These
are now generally available, and there is increasing evidence that
they are more effective in achieving normocalcaemia. Osteonecrosis of the jaw, an important adverse effect of bisphosphonates, may not be relevant in a palliative care setting.

Fractures
Bone metastases are a common feature of advanced malignancy; they are particularly common in myeloma and cancer of
the prostate or breast. In many patients, bone metastases have
been diagnosed before the terminal stages of illness; in such
cases, treatment to prevent pathological fractures should be
considered. When more than one-third of the bone cortex is
destroyed, the bone is at risk of fracture and prophylactic
internal fixation should be considered. The morbidity of such
surgery is considerably less than that seen when a fracture is
treated surgically. Recent studies have shown that bisphosphonates can reduce the incidence of fracture and the need for
palliative radiotherapy in patients with breast cancer, prostate
cancer or myeloma; such treatment must be introduced early in
the disease.5

Treatment of hypercalcaemia
C
C

C
C
C

Rehydration e give at least 2 litres of sodium chloride 0.9%


Start intravenous bisphosphonate immediately e pamidronate,
90 mg over 2 hours, or zoledronic acid, 4 mg over 15 minutes if
renal function is adequate
Continue rehydration for 72 hours or until biochemical markers
of dehydration return to normal
Ensure adequate oral fluid intake
Check serum calcium after 3e5 days and again after 3 weeks
Consider prophylaxis with monthly disodium pamidronate, 60e90
mg IV over 90 minutes, or zoledronic acid, 4 mg over 15 minutes

Features: onset of limb pain that is worse on weight-bearing may


be a warning of impending fracture. Fractures can occur with
minimal or no trauma, and cause sudden severe pain, limb
deformity, tenderness and pain on movement.

Table 1

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PHYSICAL PROBLEMS

3 Kee ST, Kinoshita L, Razavi MK, Nyman UR, Semba CP, Dake MD.
Superior vena cava syndrome: treatment with catheter-directed
thrombolysis and endovascular stent placement. Radiology 1998;
206: 187e93.
4 Howell A. Tumour-induced hypercalcaemia. Eur J Palliat Care 2002; 9: 5e7.
5 Pickering ML, Mansi JL. The role of bisphosphonates in breast cancer
management: review article. Curr Med Res Opin 2002; 18: 284e95.
6 Al-Hakim W, Jagiello J, Mannan K, Briggs TW. The palliative role of
orthopaedics. Br Med J 2006; 332: 1227e8.

Investigations: plain radiography confirms the presence of


a pathological fracture.
Management: the aim is pain relief and, if possible, restoration
of function. Surgical fixation is usually the quickest means of
achieving both and should be considered in most limb fractures
in patients who are fit for the procedure. Expert advice should be
sought, ideally from an orthopaedic surgeon with a special
interest in this area.6 Radiotherapy is often given following
internal fixation, to improve healing and provide longer-term
pain relief. Radiotherapy alone does not restore function and
does not improve pain control without continued immobilization; it is therefore appropriate only after fixation or when fixation is not indicated (e.g. fracture of the humeral head). Fracture
immobilization and analgesia alone are generally used in patients
who are not fit for fixation.
A

FURTHER READING
Regnard C, Tempest S. A guide to symptom relief in advanced disease.
4th edn. Hale: Hochland & Hochland, 1998.

Practice points
C

REFERENCES
1 Levack P, Graham J, Collie D, et al. Dont wait for a sensory level e listen
to the symptoms: a prospective audit of the delays in diagnosis of malignant cord compression. Clin Oncol (R Coll Radiol) 2002;
14: 472e80.
2 Metastatic spinal cord compression: diagnosis and management of
patients at risk of or with metastatic spinal cord compression.
NICE Guidelines 2008.

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Consider the patients circumstances before making treatment


decisions
Anticipating problems often results in better outcomes
With the patients consent, keep the family informed of
progress and the reasoning behind decisions
Hypercalcaemia should always be excluded in confused,
constipated cancer patients
Spinal cord compression is easy to diagnose once it is too late
to improve the outcome

2011 Elsevier Ltd. All rights reserved.

PHYSICAL PROBLEMS

Palliative care in
non-malignant disease

Whats new?
C

Amy C Gadoud
C

Miriam J Johnson
C

Abstract
A lack of access to specialist palliative care (SPC) has led to a lack of clinicians skills, knowledge and attitudes pertinent to the management of
patients with chronic conditions such as end-stage heart failure, chronic
obstructive pulmonary disease (COPD) and renal failure. Recognition of
the end-stage remains a key challenge. This article discusses how a palliative care approach can be incorporated into standard active treatment,
outlines the management of important symptoms and discusses the
importance of advance care planning. The particular problems experienced by patients with chronic neurodegenerative disease are discussed,
and swallowing and respiratory difficulties are explored in the context of
potential loss of mental capacity and ability to communicate. The importance of excellent communication skills is highlighted in particular regard
to advance planning for end-of-life issues.

Advance care planning is recognized as important for patients


with non-malignant diseases, as well as those with cancer
There have been advances in the management of breathlessness, including pharmacological and non-pharmacological
approaches
The range of diseases that are recognized as appropriate for the
palliative care approach has increased: in renal disease, palliative care is seen as an appropriate alternative to dialysis for
some patients

a palliative care approach (i.e. holistic assessment and addressing of patient problems, with support for informal carers), and
access to SPC services for patients with persistent or complex
issues.6 An either/or approach, which delays access to palliative care until too late, or denies it completely, should be
avoided.

Advance care planning


The recognition that a patient has now entered the advanced
stage of their illness enables appropriate future care to be planned in advance, taking into account the patients own preferences and those of their caregivers. Sensitive communication is
needed to discuss the stage of illness and the need to tailor both
treatments and place of care with the patient and family. Such
advance care planning to establish preferred priorities for care
allows patients and their families to be more in control and to be
involved in decision making. For example, patients may have
clear views about where they would like to be cared for at the
very end of life and where they would prefer to die. This allows
healthcare professionals to facilitate these wishes as far as
possible and reduce unnecessary admissions to hospital for futile
and unwanted treatments. This approach needs to be flexible to
allow patients to change their mind or have different choices as
their disease or circumstances change. The prevention of inappropriate hospital deaths, and supporting home deaths is
a current Department of Health priority in the UK.7 However the
key word inappropriate should never be forgotten, as patient
voice strongly states that place of care and death is relatively low
on their list of priorities regarding end-of-life care; issues such as
not being a burden on your loved ones and control of symptoms
rank far higher.8,9 Of course, attention to caregiver support and
excellent symptom control are likely in themselves to facilitate
care at home.

Keywords advance care planning; breathlessness; heart failure;


neurodegenerative; palliative care; renal failure

Palliative care in non-malignant conditions


In 1963, Hinton published one of the first structured observations
of the physical and mental distress of patients dying on a medical
ward.1 He commented that it was not necessarily the patients with
cancer that had the most distress. His work was one of the drivers
for the development of specialist palliative care (SPC) services;
however, they grew outside the NHS, largely funded by cancer
charities. This has led to an inequity, not only in terms of access to
SPC for patients with non-malignant disease, but also with regard
to the attitudes, knowledge and skills of generic clinicians.
Recognition of the symptom burden of patients with chronic
neurodegenerative disease and human immunodeficiency virus
(HIV) infection did result in some SPC services including such
patients. However, the large and prolonged symptom burden of
organ failure has only been publicized in the last decade.2
For patients with heart failure, a shared-care approach is
recommended.3,4 and is increasingly recognized as important for
other chronic life-limiting conditions such as COPD.5 Optimized,
active disease-specific treatments should be coupled with

Cardiorespiratory disease
The disease course of heart failure and chronic obstructive
pulmonary disease (COPD) is often one of a gradual deterioration
interrupted by exacerbations that, towards end-stage, may have
no precipitant. Intensive intervention may be needed; a good
response can return the patient to their previous trajectory. As
the disease worsens, exacerbations may become more frequent
and less responsive to treatment, resulting in revolving-door

Amy C Gadoud MRCP MBChB BSc is a Clinical Fellow at Hull York Medical
School, UK. Competing interests: none declared.
Miriam J Johnson MD FRCP MRCGP MBChB is a Reader in Palliative Medicine at
Hull York Medical School, UK and Honorary Consultant to St Catherines
hospice, Scarborough, UK. Competing interests: none declared.

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PHYSICAL PROBLEMS

admissions.5,6 In addition, patients with heart failure may


become less tolerant to maintenance treatment, due to renal
failure or hypotension.3,4
Recognizing this end-stage is one of the clinicians major
challenges. If the situation is not discussed with the patient and
family, burdensome treatment, admissions, and futile resuscitation attempts may occur; the patient is thereby denied the
opportunity to consider their options at the end of life, perhaps
dying at home or hospice rather than in hospital. This becomes of
special concern in heart failure patients with an implantable
cardioverter-defibrillator (ICD). If these are not re-programmed
to pacemaker mode only, the dying process may be complicated by repeated shocks that restore sinus rhythm temporarily
before unresponsive arrhythmia or asystole develops.10
Communication with patient and relatives requires skill and
compassion.

Other symptoms
Pain, nausea, constipation, psychological problems (such as
anxiety/depression) and fatigue are common problems in
cardiorespiratory disease and compound the social, financial and
spiritual impact of the illness on the patient and their carers.
Generic palliative care skills are applicable, but sometimes
forgotten in the midst of disease-directed treatments. Underlying
factors that lead to symptoms, such as hypokalaemia and overdiuresis (fatigue), ischaemia, arthritis and gout (pain), liver
congestion, drugs such as spironolactone, and constipation
(nausea) should be looked for and managed. The WHO analgesic
ladder is useful in non-malignant disease although NSAIDs and
amitriptyline should be avoided in heart failure. Likewise,
cyclizine should be avoided in heart failure as an anti-emetic
because it is pro-arrhythmic. If possible, fluid-restricted
patients with heart failure who are constipated should avoid
ispaghula husk. Instead, a macrogol should be tried.

Breathlessness
Neurodegenerative conditions

Breathlessness is a major feature of both heart failure and


chronic lung diseases. There are differences in the pathophysiology of the breathlessness but the management is similar.
A full assessment is important, looking for reversible
contributory causes such as anxiety, pleural effusion and fluid
overload, infection, pulmonary embolism and anaemia.
Non-pharmacological methods of management have been
shown to be helpful for breathlessness in advanced disease.
These include pacing and prioritizing of activities to allow best
use of available energy, breathing exercises, anxiety management and cognitive behavioural therapy techniques. Exercise
programmes to help contributory de-conditioning are also useful.
The use of a handheld fan is often helpful and cooling of the
facial skin can reduce the sensation of breathlessness.11
The main pharmacological options are oxygen, opioids,
phenothiazines and benzodiazepines. Both oxygen and air can
improve breathlessness, but the flow of gas, rather than correction of hypoxaemia, appears to be important for this symptom
(this article will not discuss the benefit of long-term oxygen
therapy as part of disease treatment for COPD).12 With current
evidence it is recommended that patients should be given oxygen
for breathlessness only after a formal 3-day trial where more
simple options such as a handheld fan have been unhelpful.
Opioids can help to relieve breathlessness in both heart failure
and COPD.13,14 Intermittent use of benzodiazepines for panic
may be needed. In the dying phase itself, sedation with phenothiazines or benzodiazepines such as midazolam may be the only
way to afford relief from intractable breathlessness. One study
indicates that the combination of morphine and midazolam in
the dying with severe breathlessness is more effective than either
agent alone.15
Loop diuretics, such as furosemide, are useful in fluid overload, and can be administered via the subcutaneous route in the
dying phase if venous access is difficult or unwanted.16
Non-invasive ventilation (NIV) may assist recovery from
exacerbations in COPD patients, and may also be useful for some
patients with sleep apnoea (usually obstructive in COPD) or
periodic ventilation (seen in heart failure) affecting sleep. In
selected patients with heart failure, symptoms and prognosis
may benefit from cardiac resynchronization.

MEDICINE 39:11

The palliative care approach of assessment and treatment of


symptoms17 coupled with end-of-life care planning can also be
used in the management of neurodegenerative conditions, such
as dementia,18 multiple sclerosis (MS), motor neurone disease,
Huntingtons disease, Parkinsons disease and Parkinsons plus
conditions (e.g. multi-systems atrophy and progressive supranuclear palsy). Disease progression in these conditions can seem
relentless to patients, their families and their attending clinicians.
All clinicians should be aware of the common problems experienced by these patients and know when to seek specialist advice.
Establishing how they would wish their care to be managed in
the event of cognitive decline is crucial and now enshrined in law
with the Mental Capacity Act.

Pain
Nearly two-thirds of patients with MS suffer pain (see Table 1).
Muscle cramps and joint stiffness associated with spasticity are
common. Opioids may be effective and adjuvant analgesics,
including anticonvulsants, anticholinergics and antispasm treatments, can also be useful. Severe spasticity may respond to
intrathecal baclofen infusion, preventing the need for a high
systemic dose that may cause unacceptable drowsiness.

Causes of pain in patients with multiple sclerosis


Acute

Chronic

Paroxysmal dysaesthetic pain


(e.g. Lhermittes sign on neck
flexion)
Trigeminal neuralgia
Optic neuritis
Migraine
Tension headache
Cluster headache
Painful tonic seizures/spasms

Visceral pain (e.g. bladder,


spasms, constipation)
Peripheral dysaesthesia
(e.g. burning or stabbing
pains in limbs)
Back pain due to degenerative
spinal disease

Table 1

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PHYSICAL PROBLEMS

Fatigue

Motor neurone disease patients are at particular risk of


chronic hypoventilation. Patients who may benefit from noninvasive ventilation include those with a chronic disease
course, good communication skills, mild bulbar muscle
involvement, personal motivation and a supportive environment.19 Usually, in the UK, NIV is employed to prevent morning
headache and confusion due to carbon dioxide retention, and
daytime somnolence. In other countries, such as Japan, full
ventilatory support is used more often.

It is important to exclude causes such as depression, sleep


disorders, adverse effects of medication and other co-morbidity.
A combination of education (relaxation techniques and environment modification), pharmacological agents (methylphenidate or modafinil e with specialist supervision) and energy
conservation techniques may help.

Depression
Clinically significant depression is common and should be treated
at all stages of disease. There are correlations between disease
activity and survival in sufferers and depression in MS patients.
Cognitive impairment, such as concentration, memory, abstract
thinking and personality changes, is typical in Huntingtons
disease. This is also seen in MS and Parkinsons disease.

Chronic renal disease


Patients dying from end-stage renal disease have a similar
symptom burden to patients dying from cancer. Renal function
measurements correlate poorly with symptoms, and management should be symptom-based. The medications available are
restricted due to the decline in renal function, and prescribing is
complex both in those receiving dialysis and those receiving
supportive care only. Close liaison with the renal team is vital.
However, fentanyl and alfentanil are relatively well-tolerated
opioids in comparison to morphine and its metabolites, which
accumulate in renal failure. Opioids can be used for severe pain
or breathlessness due to pulmonary oedema or metabolic
acidosis. Loop diuretics in high doses (e.g. 250e500 mg furosemide per day with or without metolazone) may be effective in
relieving symptoms associated with fluid overload. Respiratory
tract secretions may respond to anti-muscarinics. Haloperidol (at
doses of up to 5 mg in 24 hours) is a safe drug to use for nausea
and vomiting and terminal restlessness and agitation can be
managed with midazolam.
Conservative management and palliative care may offer better
quality of life and may not reduce survival compared with dialysis. Careful counselling is therefore needed regarding any
treatment plan. Some patients on dialysis also have a poor
prognosis usually because of co-morbidities, especially cardiac
disease. A retrospective analysis of patients with stage 5 kidney
disease, managed without dialysis showed a 2-year survival of
47% and people with co-morbidities had a much worse
outcome.20

Swallowing, communication and ventilation


Swallowing and communication difficulties are a serious
problem and are often a cause of fear. Speech and language
therapists and occupational therapists can provide communication aids and advise on changes in diet. When mealtimes become
an exhausting ordeal and weight starts to drop, skill is needed to
discuss artificial nutrition and hydration. Enteral-feeding gastrostomy tubes (Figure 1), inserted under either radiological or
endoscopic guidance, should be offered before the onset of
chronic hypoventilation (vital capacity 50%). The prevention
of unwanted intubation or artificial feeding in an emergency
setting when capacity may be lost is important. Early discussion,
clear documentation and the completion of advance directives
are recommended. Ideally these issues should be discussed while
speech remains, although in practice many patients cannot
predict how they would feel until they are facing the situation. As
communication becomes more difficult, adequate time is needed
to ascertain a patients wishes. In dementia, poor appetite and
weight loss are generally seen in very advanced, pre-terminal,
disease and the evidence suggests that artificial feeding is
rarely indicated and may be harmful.18

HIV and AIDS


At the start of the AIDS epidemic, HIV clinicians provided palliative care for a rapidly terminal illness. Combination antiretroviral therapy has transferred care to the arena of chronic
disease management in the outpatient setting, although increases
in drug resistance may change this again in the future. HIV
infection still causes debilitating symptoms and both general and
SPC clinicians need to be aware of common issues and their
management.

Summary
Palliative care involves identification, assessment and holistic
management of patients symptoms with support of carers and
thought given to end-of-life issues.
This approach is applicable to non-malignant chronic conditions. Active management of the underlying disease should be
coupled with a palliative care approach. Recognition and
discussion of the end-stage of illness of patients remain a key

Figure 1 A tube from a Freka PEG Gastric Set e a relief or an unwanted


life-prolonging measure?

MEDICINE 39:11

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PHYSICAL PROBLEMS

17 Kristjanson LJ, Toye C, Dawson S. New dimensions in palliative care:


a palliative approach to neurodegenerative diseases and final illness
in older people. Med J Aust 2003; 179(6 Suppl): S41e3.
18 Hughes JC, Jolley D, Jordan A, Sampson EL. Palliative care in
dementia: issues and evidence. Adv Psychiatr Treat 2007; 13:
251e60.
19 Borasio GD, Voltz R, Miller RG. Palliative care in amyotrophic lateral
sclerosis. Neurol Clin 2001; 19: 829e47.
20 Murtagh FEM, Marsh JE, Donohoe P, Ekbal NJ, Sheerin NS, Harris FE.
Dialysis or not? A comparative survival study of patients over 75
years with chronic kidney disease stage 5. Nephrol Dial Transplant
2007; 22: 1955e62.

challenges for doctors. Communication is of major importance in


planning for these patients, not only to prevent unwanted
intervention when capacity is lost but also to empower patients
who are prepared to discuss their management face to face. A

REFERENCES
1 Hinton JM. The physical and mental distress of the dying. QJM 1963;
32: 1e21.
2 Delamothe T, Knapton M, Richardson E. Were all going to die. Deal
with it. Br Med J 2010; 341: c5028.
3 Jaarsma T, Beattie JM, Ryder M, Rutten FH, McDonagh T, Mohacsi P.
Palliative care in heart failure: a position statement from the palliative care workshop of the Heart Failure Association of the European
Society of Cardiology. Eur J Heart Fail 2009; 11: 433e43.
4 Goodlin SJ, Hauptman PJ, Arnold R, Grady K, Hershberger RE,
Kutner J. Consensus statement: palliative and supportive care in
advanced heart failure. J Card Fail 2004; 10: 200e9.
5 Pinnock H, Kendall M, Murray SA, Worth A, Levack P, Porter M.
Living and dying with severe chronic obstructive pulmonary
disease: multi-perspective longitudinal qualitative study. Br Med J
2011; 342. doi:10.1136/bmj.d142.
6 Boyd K, Murray SA. Recognising and managing key transitions in end
of life care. Br Med J 2010; 341: c4863.
7 National End of Life Care Programme. Preferred Priorities for Care
[cited 23/02/2011]. Available from: http://www.endoflifecareforadults.
nhs.uk/tools/core-tools/preferredprioritiesforcare; 2007.
8 Singer PA, Martin DK, Kelner M. Quality end-of-life care. JAMA 1999;
281: 163e8.
9 Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA.
Factors considered important at the end of life by patients, family,
physicians, and other care providers. JAMA 2000; 284: 2476e82.
10 Beattie JM, Connolly MJ, Ellershaw JE. Deactivating implantable cardioverter defibrillators. Ann Intern Med 2005; 143: 690e1.
11 Bausewein C, Booth S, Gysels M, Higginson I. Non-pharmacological
interventions for breathlessness in advanced stages of malignant and nonmalignant diseases. Cochrane Database Syst Rev 2008 (2): CD005623.
12 Abernethy AP, McDonald CF, Frith PA, et al. Effect of palliative oxygen
versus room air in relief of breathlessness in patients with refractory
dyspnoea: a double-blind, randomised controlled trial. Lancet 2010;
376: 784e93.
13 Jennings AL, Davies AN, Higgins JP, Gibbs JS, Broadley KE.
A systematic review of the use of opioids in the management of
dyspnoea. Thorax 2002; 57: 939e44.
14 Johnson MJ, McDonagh TA, Harkness A, McKay SE, Dargie HJ.
Morphine for the relief of breathlessness in patients with chronic
heart failure e a pilot study. Eur J Heart Fail 2002; 4: 753e6.
15 Navigante AH, Cerchietti LC, Castro MA, Lutteral MA, Cabalar ME.
Midazolam as adjunct therapy to morphine in the alleviation of
severe dyspnea perception in patients with advanced cancer. J Pain
Symptom Manage 2006; 31: 38e47.
16 Zacharias H, Raw J, Nunn A, Parsons S, Johnson M. Is there a role for
subcutaneous furosemide in the community and hospice management of end-stage heart failure? Palliative Med 2011; 25: 658e63.

MEDICINE 39:11

FURTHER READING
Addington-Hall J, Higginson IJ, eds. Palliative care for non-cancer patients.
Oxford: Oxford University Press, 2001; 44e53.
Booth S, Dudgeon D, eds. Dyspnoea in advanced disease. A guide to
clinical management. Oxford: Oxford University Press, 2006.
Johnson MJ, Lehman R, eds. Heart failure and palliative care: a team
approach. Oxford: Radcliffe, 2006.
Oliver, D on behalf of National End of Life Care Programme (NEoLCP),
Neurological Alliance and the National Council for Palliative Cares
(NCPC) neurological group. End of life care in long term neurological
conditions a framework for implementation. 2010. Available from: The
National Council for Palliative Care. The Fitzpatrick Building, 188e194
York Way, London, N7 9AS www.ncpc.org.uk.

Practice points
C

A shared-care approach of palliative care with active diseasespecific treatments is recommended for the management of
patients with heart failure or COPD
Patients with chronic life-shortening non-malignant disease
have symptoms affecting all domains of life and require
holistic assessment
Currently many such patients do not have the opportunity of
future planning of care; good communication is required,
particularly in conditions where language and mental capacity
may become impaired
Specialist palliative care services have a role in complex
symptom management, end-of-life care for patients and
educational support for the patients usual attending clinical
team

Acknowledgement
Dr Milind Arolker was a co-author of the original article published
in 2008.

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PHYSICAL PROBLEMS

Other problems in palliative


care

(e.g. hyponatraemia, hypokalaemia) should be sought and


treated. Corticosteroids are commonly used to relieve symptoms
of asthenia but their effect is usually short-lived and the adverse
effects, such as proximal myopathy, may worsen the weakness
after a few weeks. If using corticosteroids, a starting dose of
dexamethasone (4 mg daily) should be rapidly reduced (towards
0.5e1 mg/day). Megestrol and other progestogens have also
been used but there is little convincing evidence in their favour.
Likewise, antidepressants have no proven role in the treatment of
asthenia, unless it is a presenting symptom of depression.
The most important management approach is to help patients
adapt to their fatigue and weakness. Physiotherapy, occupational
therapy (including use of physical aids) and provision of homecare services may be required, but this must be done as part of
a realistic goal-setting strategy.

Simon Noble

Abstract
The most common symptoms of advanced disease, such as pain, nausea
and dyspnoea, are readily assessed and often the focus of consultations.
However, many prevalent symptoms remain that may be ignored if not
specifically sought by the healthcare professional and, unaddressed,
these symptoms may have a significant impact on remaining quality of
life. This paper will focus on the assessment and management of symptoms such as asthenia, constipation, oral problems, wound care, hyperhidrosis, lymphoedema, ascites, pruritus and venous thromboembolism.

Constipation
Constipation is reported in about 50% of patients admitted to
a hospice, but this is probably an underestimation since the
reported prevalence of laxative use is about 80%.
Opioid analgesics are a major cause of constipation since they
reduce motility in the small and large bowel. This leads to
increased fluid absorption from the gut, which results in the
formation of hard stools.
Constipation can be associated with abdominal pain and
distension, and may result in faecal impaction, intestinal
obstruction, urinary retention or urinary incontinence. Overflow
diarrhoea may occur in patients with faecal impaction making
them less compliant with taking further laxatives.
Assessment of constipation primarily involves taking a history
and performing a rectal examination. Plain abdominal radiography is sometimes useful in confirming the diagnosis (Figure 1).

Keywords ascites; hyperhidrosis; lymphoedema; oral problems; pruritus;


wound care

Patients with advanced cancer experience many different symptoms. Healthcare professionals attach much significance to
certain symptoms (e.g. pain) and almost none to others (e.g. dry
mouth), though these orphan symptoms can have a notable
effect on the patients quality of life.
The underlying cause of symptoms must be sought, and may
include:
 direct effect of tumour (anatomical effect)
 indirect effect of tumour (physiological effect)
 effect of anticancer treatment (surgery, radiotherapy,
chemotherapy)
 effect of other treatments
 psychological factors
 concurrent illness.
Management of these symptoms includes treatment of the
underlying cause and symptomatic measures. Treatments must
be tailored to the individual patient, and those that are ineffective
or intolerable should be discontinued.

Management: reversible causes such as hypercalcaemia should


be considered and corrected. Oral laxatives may be used to treat
constipation and the choice of laxative will depend upon the
consistency of the stool and cause of the constipation. Patients
with hard stools require a softening agent (e.g. docusate, lactulose, magnesium hydroxide with liquid paraffin); patients with
soft stools require a stimulating agent (e.g. bisacodyl, danthron,
senna). In practice, most patients with advanced cancer require
a combination. Typical regimens used in palliative care are
shown in Table 1. Oral laxatives should be given regularly, and
the dose titrated according to effect. Patients with advanced
cancer often require large doses of laxatives. The choice of
regimen is generally empirical, though danthron-based laxatives
are relatively contraindicated in patients with urinary or faecal
incontinence, because of problems with skin irritation. Bulkforming laxatives and attempts at increasing the fibre content
of the diet are poorly tolerated in the palliative care setting.
For patients with opioid-induced constipation, there are two
new developments. For severe, resistant constipation, methylnaltrexone given as a subcutaneous injection has been shown to
work when other laxatives have failed. In addition, the opioid
antagonist is being used in combination preparations with
opioids to prevent the development of constipation.
Patients with advanced cancer sometimes require additional
rectal measures such as suppositories and enemas. Patients with

Asthenia
Asthenia is defined as loss of vital forces and is a common
complaint of patients with advanced cancer; the reported prevalence is 75%. It encompasses the symptoms of fatigue (easy
tiring and decreased capacity to maintain performance), generalized weakness (anticipatory sensation of difficulty in initiating
a certain activity) and mental fatigue (impaired mental concentration, loss of memory and emotional lability).
Management: asthenia is a challenging symptom to treat.
Reversible causes such as anaemia or electrolyte abnormalities

Simon Noble MBBS FRCP PGCE DipPalMed is Clinical Senior Lecturer and
Honorary Consultant in Palliative Medicine, the Department of
Palliative Medicine, Royal Gwent Hospital, Newport, Wales, UK.
Competing interests: none declared.

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PHYSICAL PROBLEMS

which may occur throughout the day or predominantly during the


night. It is not always associated with pyrexia. Causes include
infection, hormone treatments (e.g. tamoxifen and luteinizing
hormone-releasing hormone analogues), neoplastic fever (e.g.
Hodgkins lymphoma, renal cell carcinoma and any solid tumour
with liver metastases), thyrotoxicosis, opioid use and
hypoglycaemia.
Management: includes treatment of reversible causes (e.g.
infection, hypoglycaemia, thyrotoxicosis).2 Treatment of hyperhidrosis with pyrexia includes:
 cooling measures (e.g. a fan)
 rehydration
 antipyretics e aspirin and paracetamol are thought to
reset thermosensitive neurons in the pre-optic and anterior hypothalamus; other non-steroidal anti-inflammatory drugs (NSAIDs) and corticosteroids can be effective
in certain circumstances.
In hyperhidrosis without pyrexia, treatment includes:
 histamine receptor antagonists (e.g. cimetidine, 400e800
mg twice daily) e mechanism of action unclear
 antimuscarinics e thought to act directly on the sweat
glands rather than on the thermoregulation centre
 NSAIDs (e.g. diclofenac 50 mg three times daily)
 selective serotonin reuptake inhibitors (SSRIs; e.g.
paroxetine, sertraline).
Figure 1 Abdominal radiograph demonstrating faecal loading.

Xerostomia
Xerostomia is a subjective sensation of dryness of the mouth. It is
a common symptom in patients with advanced cancer and occurs
in up to 77% of hospice inpatients.

hard stools require a softening agent (e.g. glycerine suppositories, arachis oil enema); those with soft stools require a stimulating agent (e.g. bisacodyl suppositories, sodium citrate enema).
It should be noted that arachis oil is contraindicated in patients
with known nut allergies. If manual evacuation is required for
faecal impaction, the patient must be adequately sedated to
minimize distress.1

Causes: the most common cause is reduction in saliva production although it can also result from a change in the composition
of the saliva. Several drugs used in palliative care (e.g. opioids,
antimuscarinics, sedatives) can cause xerostomia.

Hyperhidrosis

Effects: xerostomia may be associated with other symptoms


including mouth discomfort, altered taste, dysphagia and difficulty speaking. It may lead to dental caries, oral candidiasis
(Figure 2) and other oral infections.

Hyperhidrosis is the secretion of an abnormally large quantity of


sweat. Patients may experience generalized or localized sweating,

Management: includes treatment of reversible causes (e.g.


alteration of drug therapy).

Laxative regimens commonly used in palliative care


Typical regimen (softener plus
stimulant)

Usual dose range

Poloxamer plus danthron


(co-danthramer)
Docusate plus danthron
(co-danthrusate)
Magnesium hydroxide
plus senna

5e20 ml b.d. or one to four


capsules b.d.
5e20 ml b.d. or one to four
capsules b.d.
5e30 ml b.d. plus 5e30 ml b.d.

Co-danthramer is also available in a strong preparation.


Sodium docusate 200 mg given twice daily (b.d.) primarily acts as a softener
and given three times daily (t.d.s) has additional stimulant properties.

Table 1

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Figure 2 Severe oropharyngeal candidiasis.

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PHYSICAL PROBLEMS

Acupuncture e has been used with success in patients with


radiation-induced xerostomia, and in xerostomia of other causes.
Oral hygiene measures e good oral hygiene is vital in
patients with xerostomia. Many benefit from referral to a dentist
or dental hygienist.

Fistulas
A fistula is an abnormal connection between two epithelial
surfaces. Clinical features and complications depend on the
anatomical connections; for example, an enterocutaneous fistula
usually presents with an offensive discharge onto the skin and
may result in skin excoriation, whereas an enterovesical fistula
can present with pneumaturia and foul-smelling, infected urine.
Development of a fistula may also lead to generalized physical
problems (e.g. water and electrolyte imbalance, malnutrition)
and psychological problems (e.g. anxiety, depression).
Determining the anatomical connections of a fistula can be
difficult, even using endoscopy and radiology.
Management
Repair e surgical repair is not usually feasible because of the
site of the fistula and/or the debilitated state of the patient, but
stenting may be appropriate.
Bypass e may be achieved by surgery (e.g. colostomy in
distal gastrointestinal fistula, insertion of nephrostomy tubes in
bladder fistula).
Reduction in fistula output e is possible by pharmacological
therapy or non-pharmacological therapy (e.g. urinary catheter in
bladder fistula). Antisecretory drugs (e.g. hyoscine butylbromide, octreotide) can decrease the large-volume output
associated with proximal gastrointestinal fistulas.
Other measures e constipation can affect the output of distal
gastrointestinal fistulas and must be managed adequately (see
above). Patients with cutaneous fistulas require suitable stoma
appliances to collect the discharge, measures to counteract the
odour of the discharge (e.g. aromatherapy), and measures to
protect the surrounding skin (e.g. barrier creams). The advice of
a stoma nurse should be sought.

Figure 3 Lymphoedema.

Pharmacological methods e rely on saliva substitutes


(e.g. carboxymethylcellulose-based and mucin-based artificial
saliva) or saliva stimulants (e.g. sugar-free chewing gum, sugarfree mints, malic acid, pilocarpine). Choice of treatment depends
on the aetiology, the patients general condition and prognosis,
the presence or absence of teeth and, most importantly, patient
preference. Patients with teeth should not be treated with acidic
products (e.g. some carboxymethylcellulose-based artificial
salivas, malic acid).

Lymphoedema
Lymphoedema is tissue swelling caused by failure of lymph
drainage (Figure 3); it generally occurs in the limbs, but can
occur in other parts of the body. Patients usually complain of
swelling of the limb and discomfort (feeling of tightness of skin
or heaviness of the limb). Characteristic skin and subcutaneous
tissue changes include increased tissue turgor, prominent skin
creases, hyperkeratosis and papillomatosis. Elevation of the
affected limb does not significantly reduce the swelling.
Complications of lymphoedema include lymphorrhoea,
infection (e.g. cellulitis, septicaemia), and capsulitis caused by
the weight of the swollen limb.

Saliva stimulants e are preferable to saliva substitutes. They


increase the secretion of normal saliva and thus improve both
xerostomia and the other complications of hypo-salivation,
whereas saliva substitutes generally improve only xerostomia.
Sugar-free chewing gum has been shown to be effective and well
tolerated in patients with advanced cancer. Pilocarpine (5 mg
three times daily) is preferred in patients with radiation-induced
xerostomia and is also effective in advanced cancer, but is less
well tolerated because it causes generalized parasympathetic
stimulation (e.g. sweating, dizziness).
Some patients benefit from a combination of saliva substitute
and saliva stimulant. Mucin-based artificial saliva has been
shown to be more effective and better tolerated than
carboxymethylcellulose-based types.3

MEDICINE 39:11

Management: includes treatment of reversible causes (e.g.


cancer) and treatment of aggravating factors (e.g. venous
obstruction). Drug treatments have a limited role and should
be discontinued if ineffective. Non-pharmacological measures
are useful.4

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PHYSICAL PROBLEMS

Antibiotics e (e.g. phenoxymethylpenicillin and flucloxacillin, co-amoxiclav, erythromycin) are indicated for cellulitis.
Prophylactic antibiotics (e.g. low-dose phenoxymethylpenicillin)
should be considered in patients with recurrent cellulitis.
Bandaging and hosiery e support bandaging or hosiery
(non-application of pressure) is used in patients in whom
a reduction in lymphoedema is not expected. Compression
bandaging or hosiery (application of pressure) is used when
a reduction may occur. The choice depends on the circumstances
(e.g. bandaging is generally used in gross lymphoedema).
Therapeutic massage e (effleurage) is a specialized technique that can encourage increased lymphatic drainage.
Physiotherapy e aims to maintain movement in the limb,
encouraging lymphatic drainage, and helps to prevent joint
stiffness.
Figure 4 Grade 4 sacral pressure ulcer.

Pressure sores

Diuretics e seldom reduce the swelling significantly, but may


provide symptomatic relief (e.g. reduced feeling of skin
tightness).
Corticosteroids e may reduce the swelling in lymphoedema
secondary to cancer.

Pressure sores result from impairment of local vascular and


lymphatic systems caused by excessive mechanical stresses
(compression and shear forces). Patients with advanced cancer are
at increased risk because of nutritional disturbances associated with
malignancy. Pressure sores occur over bony prominences

Wound classification and tissue damage


Grade 0 (potential pressure ulcer)
Inflammation
Erythema superficial redness of the skin
caused by pressure, allergy or drug sensitivity
Induration hardened skin (no change in
normal skin colour) detected by massage of the
suspect area, usually over a bony prominence
Grade 1 (incipient ulcer)
Blood or fluid under the skin or in a blister
Grade 2 (superficial wound/ulcer)
Break in the skin (epidermis) that may also
involve the dermis
Grade 3 (medium wound/ulcer)
Destruction of skin (epidermal and dermal
layers)
May or may not include an obvious cavity with
or without slough
Grade 4 (deep/open wound/ulcer)
Penetration of all layers of the skin with an
obvious cavity
Necrotic tissue may or may not be seen
Black discoloration of tissues under the surface

Figure 5

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PHYSICAL PROBLEMS

2 weeks with complete relief of pressure. Once the skin has


broken, healing may take at least 3 months. Necrotic tissue must
be debrided to allow regranulation. The area must be kept clean
and moist, and regenerating tissue must be protected. Specialist
nurses are employed in some hospitals and should be involved.

Venous thromboembolism (VTE)


Cancer patients are at high risk of developing deep vein thrombosis (DVT). In addition to risk factors such as stasis (from
immobility or local tumour occlusion) and endothelial damage
(from tumour infiltration or following surgery), cancer patients
have hypercoagulable blood due to the release of procoagulants
from the cancer itself (e.g. tissue factor and cancer procoagulant). It is an under-diagnosed condition since cancer patients
frequently have co-morbidities with symptoms similar to those of
DVT (e.g. swollen legs, pain and erythema) (Figure 6).
Management: of thrombosis in cancer patients is challenging
since they have a higher incidence of recurrence and bleeding on
anticoagulation. Warfarin is no longer recommended for anticoagulation since it is associated with higher bleeding rates than
in non-cancer patients and it is difficult to maintain a stable
international normalized ratio (INR) in the palliative care setting.
Long-term low-molecular-weight heparin has been shown to
have greater efficacy than warfarin and has far fewer drugedrug
interactions than warfarin. It is the drug of choice in the treatment of cancer-associated thrombosis and has been shown to be
an acceptable intervention in palliative care patients.5

Figure 6 Left deep vein thrombosis.

(Figure 4) and can cause discomfort or pain, particularly when


superficial. The principal complication is infection (e.g. cellulitis,
osteomyelitis).
Pressure sores have been classified by various systems; the
most useful is the Wound Care Society classification
(Figure 5).

Pruritus

Management: is prevention, chiefly e every effort should be made


to relieve pressure on at-risk areas by movement (active, passive)
and the use of pressure-relieving equipment (cushions, mattresses).
Risk is also reduced by maintaining skin hygiene and by using
emollients on dry areas of skin to prevent superficial cracking.
Pressure sores are often slow to heal in these patients, and
may fail to heal. Recovery of a reddened area of skin takes about

Severe itching is a rare complication in cancer. However, its low


prevalence is frequently compensated for by an unmatched and
devastating influence on the quality of life. The commonest cause in
advanced malignancy is cholestatic jaundice, although there is no
clear association between the severity of pruritus and the serum
bilirubin. Other causes include uraemia, opioid use, iron deficiency
anaemia, primary polycythaemia, thyroid disease and diabetes.

Management of itching accompanying cancer


Condition

Step 1

Step 2

Step 3

General measures

Correct the correctable, e.g.


treat the disease
Naltrexone 12.5e250 mg o.d.

Emollient creams several


times per day
Rifampicin 75e300 mg o.d.
Paroxetine 5e20 mg o.d.
Cimetidine 200 mg q.d.s.
Sertraline 50 mg o.d.
Diclofenac 100 mg p.r. or
tenoxicam 20 mg i.v.
Mirtazapine 15e30 mg o.d.
Gabapentin 100e600 mg t.d.s.
Pregabalin

Sedative, e.g. benzodiazepines


or sedative antihistamine
Methyltestosterone 25 mg sl o.d.

Cholestasis
Hodgkins lymphoma
Polycythaemia vera
Spinal opioids induced
pruritus
Paraneoplastic pruritus
Origin unknown
Neuropathic pruritus

Prednisolone 10e20 mg t.d.s


Aspirin 100e300 mg o.d.
Bupivacaine intrathecally
Paroxetine 5e20 mg o.d.
Paroxetine 5e20 mg o.d.
Gabapentin 100e600 mg t.d.s.

Mirtazapine 15e30 mg at night


Benzodiazepine
Ondansetron 8 mg i.v. stat
Thalidomide 100 mg o.d.
Thalidomide 100 mg o.d.
5% lidocaine patch if itch localized

Modified from Zylicz Z, Twycross R, Jones EA, eds. Pruritus in advanced diseases. Oxford: Oxford University Press, 2004.
i.v., intravenously; o.d., once daily; sl, slow release; q.d.s., four times daily; t.d.s., three times daily.

Table 2

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PHYSICAL PROBLEMS

 pez Sanchez AF, Hernandez Vallejo G. Treatment of


2 Guijarro B, Lo
xerostomia. A review. Med Oral 2001; 6: 7e18.
3 Miller M. Patients with troublesome sweating. J Palliat Care 1997; 13:
53e4.
4 Regnard C, Allport S, Stephenson L. ABC of palliative care. Mouth care,
skin care, and lymphoedema. Br Med J 1997; 315: 1002e5.
5 Noble SI, Shelley MD, Coles B, Williams SM, Wilcock A, Johnson MJ.
Management of venous thromboembolism in patients with advanced
cancer: a systematic review and meta-analysis. Lancet Oncol 2008 Jun;
9: 577e84.
6 Krajnik M, Zylicz Z. Understanding pruritus in systemic disease. J Pain
Symptom Manage 2001; 21: 151e68.

Management: should include general measures such as cutting


nails to avoid trauma of scratching, emulsifying ointment or
aqueous cream instead of soap, loose cotton clothing and emollients after bathing.6 Specific treatment depends on the cause and
is summarized in Table 2.
A

REFERENCES
1 Candy B, Jones L, Goodman ML, Drake R, Tookman A. Laxatives or
methylnaltrexone for the management of constipation in palliative
care patients. Cochrane Database Syst Rev 2011 Jan 19 (1):CD003448.

MEDICINE 39:11

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PHYSICAL PROBLEMS

Care in the last hours


and days of life

developed as places of excellence in the care of the dying, health


professionals in all settings need to be skilled at managing the
terminal phase.
The Liverpool Care Pathway for the Dying Patient (LCP) is an
integrated care pathway that is used at the bedside to promote
optimal care of the dying in the last hours and days of life. It is
a means to transfer best quality of care for the dying from the
hospice model into other clinical areas, so that wherever the
person is dying there can be an equitable model of care. It gives
guidance on the different aspects of care required, including the
diagnosis of dying, comfort measures, anticipatory prescribing of
medication and review of interventions delivered. Psychological
care, family support and spiritual care are included. Although
initially focused on cancer patients, the LCP is appropriate irrespective of diagnosis and is applicable in the community, nursing
home or hospital.1 There are several distinct areas of care during
the dying phase and these are discussed below.

Laura Chapman
John Ellershaw

Abstract
Care in the last hours and days of life is an important part of medical practice.
Ensuring a dignified death for patients with appropriate support for carers is
a core activity of all healthcare professionals. Once a patient has entered the
dying phase it is important that pain and other symptoms are managed
appropriately. All medication that needs to be continued should be converted to the subcutaneous route when administration via the oral route is
no longer possible. As required medication should be prescribed for the
key symptoms that occur in dying patients, such as pain, agitation, respiratory tract secretions, dyspnoea, and nausea and vomiting. Futile treatments
should also be discontinued at this time and consideration should be given
to the discontinuation of antibiotics and blood tests. Normally a decision for
a Do Not Attempt Cardiopulmonary Resuscitation order is made at this time.
Appropriate communication both with the patient and their family is key,
both to ensure that the psychological and spiritual needs of the patient
are met and that the family is aware that the patient is dying. Decisionmaking and practice for care of the dying can be supported by use of the
Liverpool Care Pathway for the Dying Patient (LCP).

Diagnosis of dying
Providing optimum care during the dying phase requires recognition that the patient is dying. Diagnosis of dying is an important
clinical skill but is often a complex process, especially in
a hospital environment where the focus is on cure and intervention.1,2 The difficulty of recognizing the dying phase can be
affected by the illness trajectory, for example:
 steady progression and a clear terminal phase (e.g. cancer)
 gradual decline with episodes of acute deterioration and
some recovery with more sudden and seemingly unexpected death (e.g. respiratory/heart disease)
 prolonged gradual decline (e.g. dementia).3
Barriers to diagnosing dying are listed in Table 1.1 When a team
fail to recognize that a patient is in, or entering, the dying phase
there are some important consequences (Table 2).

Keywords death; diagnosis of dying; do not resuscitate; Liverpool Care


Pathway; symptom control

Caring for a patient during the last hours and days of their life
presents many challenges. Several studies have demonstrated
poor communication and symptom control for dying patients1
and it is important that all healthcare professionals receive
training on how best to care for patients at the end of life.
A major cultural shift in acute hospitals is required if the needs of
dying people are to be met and the workforce empowered to take
a leading role in the delivery of care. Dying patients are an
integral part of the population of general hospitals and death
should not be considered a failure unless the death is not as
restful and dignified as possible.

Clinical indications that a patient is entering the dying phase


The diagnosis of dying is always complex and should be made by
the multidisciplinary team (MDT) (Table 3). As a minimum,
a nurse and a doctor constitute an MDT, but this may also
include other healthcare professionals. The multi-professional
agreement that the patient is dying is more important than
other clinical indicators. Recognition of the dying phase may be
particularly difficult in frail elderly patients.1

Changing priorities in the dying phase

Caring for patients in the dying phase

Once the dying phase has been diagnosed, the priority changes
from active management to symptom control and care. This
phase requires considerable input from the healthcare team and
positive engagement with patient/family/carers. Important areas
to address during the terminal phase are:
 symptom control/comfort measures
 communication with patient/family/carers
 psychological needs
 social/spiritual needs.4

At the turn of the century most people died at home. In 2006 the
majority of deaths occurred in hospital.2 Although hospices have

Laura Chapman MSc MRCP is a Consultant in Palliative Medicine at the


Royal Liverpool and Broadgreen University Hospitals NHS Trust, UK.
Area of special interest is palliative care in the critical care environment.
Competing interests: none declared.

Symptom control/comfort measures


It is important that interventions and treatments are reviewed
and those deemed to be non-essential are discontinued. These
may include administration of intravenous antibiotics and

John Ellershaw MA FRCP is Professor of Palliative Medicine at the


University of Liverpool, UK. He is also Director of the Marie Curie
Palliative Care Institute, Liverpool. Competing interests: none declared.

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PHYSICAL PROBLEMS

Barriers to diagnosing dying


C
C
C
C

C
C
C
C
C
C
C
C

Considerations for the multidisciplinary team (MDT)


when assessing a dying patient

Hope that the patient gets better


No definitive diagnosis
Pursuit of unrealistic/futile interventions
Disagreement about the patients condition between members
of the multi-professional team
Failure to recognize key symptoms and signs
Lack of knowledge about prescribing
Poor ability to communicate with family/patient
Concern about withdrawing/withholding treatment
Fears about shortening life
Concerns about resuscitation
Cultural and spiritual barriers
Medico-legal issues

C
C

Is there a potentially reversible cause for the patients condition


(e.g. opioid toxicity, kidney failure, infection)?
Could the patient be in the last hours or days of life?
Is a specialist referral needed (e.g. specialist palliative care or
a second opinion)?

This assessment should be repeated if:


there is an improvement in the patients condition
C
concerns are raised by a member of the MDT or relative
regarding the management plan
C
3 days have passed since the last MDT assessment
C

Table 3

Table 1

psychosocial issues that may cause exacerbations. Investigations


are not usually appropriate. Analgesics may be required and
should be used according to standard principles (the World Health
Organization (WHO) analgesic ladder (see page 640 of this issue)).
In the UK, the most common strong opioids used during the dying
phase are morphine, fentanyl, diamorphine, oxycodone, and
alfentanil. If a dying patient is unable to take oral morphine it is
important that this is converted to the subcutaneous route (see
Table 4). A syringe driver can be used and morphine should also be
prescribed as required for exacerbations of pain.5,10
If a patient is using a transdermal fentanyl patch, this should
remain in situ. The long half-life makes it difficult accurately to
convert to a different opioid and can lead to increased pain in the
last hours of life. If repeated breakthrough doses of analgesics are
required, an appropriate dose of strong opioid should be added to
a CSCI to run in conjunction with the transdermal patch.11
If using other strong opioids, prescribers should be aware of
how to convert from oral to subcutaneous administration and

recording of routine vital signs (e.g. blood pressure). A Do Not


Attempt Cardiopulmonary Resuscitation order should be
completed by the most senior healthcare professional responsible
for the patients care and recorded in the case notes.1,4
The commonest symptoms in the dying phase are pain,
nausea and vomiting, agitation/restlessness and breathlessness.
Other problems include inability to swallow, constipation,
urinary problems, retained respiratory tract secretions, bleeding
and seizures. Pro-active prescribing of drugs to manage symptoms at the end of life is important. This will include analgesics,5
anti-emetics,6 sedatives7 and anticholinergics.8 Non-essential
drugs (e.g. lipid-lowering drugs, anti-hypertensives) should be
discontinued. The oral route should be used where possible, as
many patients are able to swallow tablets right up until the
moment of death. If a patient becomes unable to swallow, the
subcutaneous route is more appropriate. If necessary a continuous subcutaneous infusion (CSCI) can be started using a syringe
driver.9
Pain
All patients should have an assessment of pain, including a history
and examination where possible. It is important to exclude

Use of subcutaneous morphine for pain control in dying


patients

Consequences of the healthcare team not recognizing


the dying phase
C
C

C
C
C

Patient and family unaware that death is imminent


Patient loses trust in the doctor as condition deteriorates
without any acknowledgement that this is happening
Conflicting messages for patient/family from multi-professional
team
Patient dies with uncontrolled symptoms, resulting in
a distressing and undignified death
Complaints relating to care
Inappropriate cardiopulmonary resuscitation attempts
Cultural and spiritual needs not met

Table 2

MEDICINE 39:11

Continuous subcutaneous infusion over 24 hours: to convert


a patient from oral morphine to a 24-hour subcutaneous infusion
of morphine: divide the total daily dose of morphine by 2
(e.g. morphine slow-release tablets 60 mg twice daily orally
equals morphine 60 mg via subcutaneous infusion over 24 hours)
As-required morphine: for a patient having a subcutaneous
infusion of morphine the dose of as-required subcutaneous
morphine should be one-sixth of the 24-hour dose in a syringe
driver. For example, a patient having morphine 60 mg
subcutaneously via a driver will need 10 mg subcutaneous
morphine every 4 hours as required
For a patient not taking a regular strong opioid: prescribe
morphine 2.5e5 mg subcutaneously up to hourly as required

Table 4

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2011 Elsevier Ltd. All rights reserved.

PHYSICAL PROBLEMS

prescribe appropriate breakthrough doses. Details of conversions


can be found in the British National Formulary. If there is any
doubt, a member of the specialist palliative care team should be
contacted.

delivered every 2 hours by the nursing staff or a relative. As


intake and mobility reduces, constipation may develop. If this
causes distress, fast-acting rectal laxatives can be used.
Communication with patients and families/carers
Several communication issues arise in the dying phase. These
include handling difficult questions such as Am I dying? or
How long has he/she got? Strong emotions such as anger,
distress and anxiety may occur and these may be difficult for the
healthcare professional. Cultural issues and language differences
can contribute to the challenges of communication at the end of
life.
It is important that professionals have strategies to deal with
these challenges. Important skills include the use of verbal and
non-verbal cues to encourage the patient to disclose their fears
and concerns. Verbal skills include listening, appropriate use of
silences, acknowledgement, encouragement, reflection, open
questioning, clarification, empathy and information giving.
Professionals should also be aware of blocking techniques that
they may use. These include multiple questioning, shifting focus
to relatives, selective attention to cues and jollying along.
Personal reflection, feedback from colleagues and attendance
at approved communication skills courses are all important for
professionals in contact with dying patients and their
relatives.1,4,16

Nausea and vomiting


Anti-emetics are best administered by a CSCI. Commonly used
anti-emetics include cyclizine, haloperidol, levomepromazine
and metoclopramide. The latter should not be used if there is
intestinal obstruction. Octreotide, hyoscine or dexamethasone
may also be appropriate. A nasogastric tube can be introduced
for intractable symptoms.6,12
Delirium and agitation
The commonest causes of delerium include physical, drug
toxicity and metabolic upset. If there is opioid toxicity it may
be appropriate to switch to an alternative strong opioid.
Evacuation of a distended bowel, urinary catheterization,
treatment of hypoglycaemia and use of corticosteroids may be
appropriate.5,7,13
Two main classes of drugs are used for the management of
agitation.
 Benzodiazepines e midazolam is a water-soluble parenteral preparation which mixes well with other drugs in
a syringe driver. The normal initial dose is 10 mg/24
hours via CSCI. 2.5e5 mg can be given subcutaneously
as required. The dose in the syringe driver can be
increased to 60e80 mg/24 hours, but there is a risk of
paradoxical agitation with higher doses.
 Major tranquillizers e haloperidol: 3e5 mg/24 hours via
CSCI and 1.5e3 mg subcutaneously as required. Levomepromazine: 12.5e200 mg/24 hours via a CSCI. It may
cause skin irritation, but is otherwise well tolerated.

Religious/spiritual needs
Spiritual care is an essential component of care at the end of life.
It includes attention to religious needs and spirituality. Spirituality may be related to the vital life essence of an individual and
their search for existential meaning within a life experience.
Religious care includes the system of faith and worship that is
important to that person. A range of people can deliver spiritual
care, including appointed faith leaders, family and staff.1,17

Dyspnoea
The aim in the terminal phase is to reduce the perception of
breathlessness. Measures include use of oxygen, a fan, reassurance, opiates and benzodiazepines. The commonly used opiates
are morphine and diamorphine.14

Ethical issues
The dying phase presents a wide range of ethical issues. Patients
and/or their families may introduce the subject of euthanasia.
Resuscitation discussions can cause conflict and there may be
disagreement about withdrawing and withholding treatment
(e.g. fluids, intravenous antibiotics). Questions of competency,
consent and best interests may also present challenges for the
multi-professional team.15,16
A

Respiratory tract secretions


Management strategies include pharmacological measures and
positioning of the patient. Suctioning is not usually necessary.
Anticholinergic drugs do not remove secretions that are already
present. The most commonly used drugs are hyoscine hydrobromide and glycopyrronium.8

REFERENCES
1 Wilkinson S. Communication in care of the dying. In: Ellershaw J,
Wilkinson S, eds. Care of the dying. A pathway to excellence. 2nd
edn. Oxford: Oxford University Press, 2011.
2 Ellershaw J, Ward C. Care of the dying patient: the last hours or days
of life. Br Med J 2003; 326: 30e4.
3 Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and
palliative care. Br Med J 2005; 330: 1007e11.
4 National Council for Palliative Care. Changing gear: guidelines for
managing the last days of life in adults. London: National Council for
Palliative Care, 2006.
5 Sykes NP, Thorns A. The use of opioids and sedatives at the end of
life in palliative care. Lancet Oncol 2003; 4: 312e8.

Nutrition and hydration in the last hours and days of life


A patient in the dying phase may only be able to take sips of
fluid, and as they deteriorate further even this may not be
possible. The current evidence regarding the benefits and
burdens of providing nutrition or hydration by tube or drip (i.e.
clinically assisted) is not clear cut, and it is important to consider
the views of the patient, family and carers in the decision-making
process.15
Ongoing care
Ongoing care includes pressure area care, micturition, mouth
and bowel care. Mouth care includes keeping the mouth moist
and clean. As the patient becomes weaker this care needs to be

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PHYSICAL PROBLEMS

6 Glare P, Pererira G, Kristjanson LJ. Systematic review of the efficacy of


antiemetics in the treatment of nausea in patients with advanced
cancer. Support Care Cancer 2004; 12: 423e40.
7 Jackson KC, Lipman AG. Drug therapy for delirium in terminally ill
patients. Cochrane Database Syst Rev 2004; 2: cD004770.
8 Hugel H, Ellershaw J, Gambles M. Respiratory tract secretions in the
dying patient: a comparison between glycopyrronium and hyoscine
hydrobromide. Palliat Med 2006; 9: 279e84.
9 Dickman A, Schnieder J, Varga J, eds. The syringe driver: continuous
subcutaneous infusions in palliative care. 2nd edn. Oxford: Oxford
University Press, 2005.
10 Hanks GW, de Conno F, Cherny N, et al. Morphine and alternative opioids in
cancer pain. The EAPC recommendations. Br J Cancer 2001; 84: 587e93.
11 Ellershaw J, Kinder C, Aldridge J, Allison M, Smith JC. Care of the
dying. Is pain control compromised or enhanced by continuation of
the fentanyl transdermal patch in the dying phase? J Pain Symptom
Manage 2002; 24: 398e403.
12 Mannix K. Palliation of nausea and vomiting. In: Hanks GWC,
Cherny NI, Christakis NA, Fallon M, Kaasa S, Portenoy RK, eds. Oxford
textbook of palliative medicine. 4th edn. Oxford: Oxford University
Press, 2010; 801e812.
13 Merseyside and Cheshire Palliative care Network Audit Group. Standards and guidelines. 4th edn. Liverpool: Marie Curie Palliative Care
Institute, 2010.
14 Jennings AL, Davies AN, Higgins JPT, Broadley K. Opioids for the
palliation of breathlessness in terminal illness. Cochrane Database
Syst Rev 2001; 3: cD002066.
15 General Medical Council. Treatment and care towards the end of life:
good practice in decision making. London: GMC, 2010.

MEDICINE 39:11

16 Ellershaw J, Dewar S, Murphy D. Achieving a good death for all. Br


Med J 2010; 341. doi:10.1136/bmj.c4861 [published 16 September
2010].
17 Speck P, Higginson I, Addington Hall J. Spiritual needs in health care.
Br Med J 2006; 329: 123.

Practice points
C

C
C

677

All healthcare professionals should be skilled at managing the


terminal phase
The diagnosis of dying can be affected by the disease trajectory and other barriers
In the terminal phase symptom control and ongoing care are
the main priorities
Pro-active prescribing of analgesics, sedatives, anti-emetics
and anticholinergics is essential
Professionals should be familiar with converting oral strong
opioids to the subcutaneous route
Breakthrough analgesia should always be prescribed
Good communication skills are essential for all healthcare
professionals
Spiritual and psychological care for patients and families is
important
The Liverpool Care Pathway for the Dying Patient is a multiprofessional document that provides a template to support
the delivery of optimum care at the end of life

2011 Elsevier Ltd. All rights reserved.

SOCIAL AND ETHICAL ISSUES

Spiritual and cultural issues


at the end of life

roots and experience of rites of passage. It is, therefore, not


uncommon for religion and culture to become more important to
patients and their family/carers.

Engaging with the issues

David Mitchell

Which healthcare professionals (HCP) should be dealing with


spiritual and cultural issues at the end of life is a question open to
debate. Randall and Downie suggest these issues should be left to
those with expertise and highlight the role of healthcare chaplaincy.2 The NHS in its guidance for healthcare staff, Spiritual care
matters, clearly places the responsibility for spiritual care upon all
healthcare professionals, stating that spiritual care is not an extra
demand on healthcare staff e it is the very essence of their work.2
A view also shared by the National Institute for Health and Clinical
Excellence, which recommends the Marie Curie Cancer Care
spiritual and religious care competences for palliative care.3e5

Abstract
Spiritual and cultural issues at the end of life are common and a natural part
of the process of life and death. They often present as distress or agitation in
the patient and should be considered when pain control is difficult to
manage. Spirituality can be defined as our sense of meaning in life. It is
often influenced by, and regularly confused with, religion and culture.
While it can be suggested that society is becoming more secular and less religious, it can also be argued that it is the structure and practice of religion
rather than the faith itself that is being rejected, with people picking and
choosing the elements from different religions and cultures on which to
base their sense of meaning. Identifying and assessing spiritual and cultural
issues require healthcare professionals to engage on a human level with
patients and their families/carers. Each patient is unique and individual,
and while manuals and guidelines on spiritual, religious and cultural care
are a guide, the only true approach is to ask the patient. As with all endof-life issues, spiritual and cultural issues can be complex, and healthcare
chaplains should be consulted for advice or the patient referred for
intervention.

Issues at the end of life


The clearest issues to identify are those that are focused upon the
religious dimensions of spirituality and culture. Control of pain
and other symptoms is usually regarded as normal practice;
however, some may refuse some or all pain control as death
approaches in order to be aware at the moment of death. Artificial hydration and feeding can be an issue depending on
whether they are regarded as basic life-sustaining measures or
artificial measures. Most, if not all, religions have allowances for
the sick that excuse them from specific practices (e.g. fasting)
though it is the patients choice. Similarly, whereas some patients
will choose to see religious leaders, others will not.
A common factor in all issues will be the patient and their
family/carers past experiences. A relative with lung cancer who
died 30 years ago will have had a very different death from what we
might expect the same patient to have today. It is common for
patients to be concerned about pain and to fear a painful death. Next
to pain, being alone at the time of death is a big concern. Patients
may want family around or be more demanding of attention to
compensate this fear. It is a particular concern for people with motor
neurone disease who may fear choking while alone. There is
a paradox though, in that it is also common for patients to choose
their moment to die when they are alone and the family, who have
sat for days by the bedside, have left the room for a toilet break or
something to eat.
As patients approach the end of their life, it is normal for the
focus of their concerns to turn away from themselves and onto their
family/carers: I just want my family to be all right. It can be
a source of comfort if patients are encouraged to talk their concerns
through and often this is a crucial time for adding to the names on
the lease of council property, making a will or considering power of
attorney. While these may seem social needs, it is also a spiritual
need if the patients greatest concern is for their family.
Some patients may choose to die at home, others in hospital;
some may change their mind as their illness and symptoms
progress and they become more concerned for the pressure under
which they are putting their family. There can be a huge emotional
pressure on family/carers to fulfil a patients request and the
healthcare professional can be a mediating guide to enable a realistic goal to be set and achieved; for example, rather than the
family promising to keep the patients wish, to say they will do

Keywords cultural issues; culture; end of life; healthcare chaplaincy;


religion; spiritual assessment; spiritual issues; spirituality

Spirituality, religion and culture


Spirituality and culture are terms that are widely used in healthcare and are enshrined in policy documents, guidelines, standards
and charters. Yet, despite their wide use, there is no definitive
description of each term. Rather than a weakness this is their
greatest strength, since they require health professionals to engage
with the patient and their family/carers.
Spirituality is best understood as whatever gives a person
meaning in life.1 Regularly the word spirituality is mistakenly used
synonymously with religion. While religion may indeed be a part of
a persons spirituality there will be other often more pressing
elements to a persons sense of meaning, such as family, friends,
their health, quality of life, and social and financial needs. Although
more generically understood, the word culture should also have
a broad and diverse understanding, yet it too is often focused upon
its ethnic and religious roots.
As patients approach the end of their life there is a heightened
awareness of spirituality and culture as people draw on their

David Mitchell BD Dip P Theo MSc (MedSci) PG Cert TLHE is a Parish Minister and
Lecturer in Healthcare Chaplaincy and Palliative Care in the University of
Glasgow. He is a former editor of the Scottish Journal of Healthcare
Chaplaincy. His interests include developing standards and competencies
in spiritual and religious care in palliative care and hospital services in NHS
Scotland. Competing interests: none declared.

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SOCIAL AND ETHICAL ISSUES

their best risks less complication in bereavement if they are


unable to keep the promise.
While a number of books, articles and guideline manuals have
been written on the different aspects of spirituality, religion and
culture, these are useful only as a guide rather than a prescriptive
tool. There is enormous diversity within each religion and culture,
and the only true way to identify issues is to ask the patient, or the
family. The guideline manuals are useful if the patient is unable to
communicate and other family members are not available;
however, a local healthcare chaplain will be more familiar with
local spiritual and cultural practices and should be consulted.

their spiritual and cultural needs and seeking to address the


issues identified can bring a tangible sense of peace not only to
the patient but to their family/carers and the team of professionals caring for them.

Spiritual and cultural self-awareness


In order effectively to engage with patients and their family/
carers spiritual and cultural issues it is essential that healthcare
professionals have thought through their own beliefs around
illness, end of life and death. Patients will often ask what do you
believe? and genuinely want to know. It can be supportive to
share something of what you believe but only if your words will
be helpful to the patient. It is not helpful to say you believe they
are destined for hell and eternal damnation unless they know
God, even if that is what you believe.

Assessing issues
A number of attempts have been made to develop assessment tools
for identifying spiritual need.6,7 The difficulty is that spiritual and
cultural issues do not lend themselves to a set format. The most
useful assessment tools are those that engage the patient in
conversation. Jackson gives the healthcare professional sample
questions for patients that can be reworded and adapted to different
settings6,7:
When you were admitted to the hospice you gave us a lot of
information. We asked you about how you were feeling. How are
you feeling now?
Depending on the answer, the following might be asked:
 How easy is it for you to find hope and peace in your life
at the moment?
 What makes it difficult for you at the moment?
 What changes has your illness brought about?
 Do you pray or meditate? Does it help you find meaning
in life or not?
This tool can easily be adapted to account for local spiritual and
cultural practices and common needs, for example by adding
questions about the support of their family and local community,
or asking is there anything we can do to support your spiritual or
cultural needs?

Conclusion
The key to good spiritual and cultural care for those at the end of
life is good communication, being comfortable in engaging with
a patient and their family, and being aware of your skills and
limitations. Spiritual, religious and cultural issues are not difficult to understand; although they can be complex, they often
come down to humanity. Healthcare chaplains have the expertise
to discuss and work through complex spiritual and cultural
needs, and have the knowledge and resources to draw on other
agencies as required.
The golden rule is never to assume you know or understand,
even if you have cared for similar patients. Spirituality is unique
to the individual, and religion and culture can be very diverse
even within communities and families. Best practice in identifying spiritual and cultural issues is to have the conversation and
ask the patient.
A

REFERENCES
1 Gordon T, Mitchell D. Making sense of spiritual care. In: Kinghorn S,
Gaines S, eds. Palliative nursing: improving end of life care.
Edinburgh: Elsevier, 2007.
2 Randall F, Downie RS. The philosophy of palliative care: critique and
reconstruction. Oxford: Oxford University Press, 2006.
3 NES. Spiritual care matters. Edinburgh: NHS Education for Scotland,
2009.
4 NICE. Improving supportive and palliative care for adults with cancer
manual. London: National Institute for Clinical Excellence, 2004.
5 MCCC. Spiritual and religious care competencies for specialist
palliative care. London: Marie Curie Cancer Care, 2003.
6 Jackson J. The challenge of providing spiritual care. Prof Nurse 2004;
20: 24e6.
7 McSherry W, Ross L, eds. Spiritual assessment in healthcare practice.
Keswick: M&K Publishing, 2010.

Addressing issues
Hope, being there, and peace are the key to addressing spiritual
and cultural issues at the end of life. The words there is nothing
more we can do are unhelpful and distressing. There is always
something that can be done in the way of palliative and supportive
care. Setting realistic and achievable goals that reflect the issues
raised by the patient are a way to foster hope.
Assessing spiritual and cultural issues requires us to engage
with patients and their family/carers on a human level. It enables
us to be there as another human being as well as a healthcare
professional. Patients and carers need to feel that sense of presence to enable them to trust the healthcare professional and
discuss their deeper spiritual and cultural issues.
Alongside the healthcare professionals clinical knowledge
and expertise in symptom control, allowing patients to express

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SOCIAL AND ETHICAL ISSUES

Ethical issues in palliative


care

Whats new?
C

Victoria J Wheatley
C

Ilora G Finlay
C

Abstract
In those with life-threatening disease, prognosis is unpredictable.
Communication with the patient and family must guide the clinician,
who must always be weighing up the benefits against the risks and
burdens of any intervention and recognizing when interventions are futile
in the face of irreversible deterioration. There is no evidence that patients
lives are shortened when opioids and other drugs are used to control pain
and other symptoms, which challenges the usual examples for double
effect that appear in many standard textbooks.
Patients and relatives can derive considerable benefit from involvement in the planning of palliative care. However, whereas many patients
undertake informal care planning in collaboration with primary and
specialist palliative care teams, only a minority share responsibility for
formal advance care planning. There is also a pressing need for greater
care planning for frail patients who are unable to participate in
decision-making, and for whom emergency admission and terminal care
in hospital would be inappropriate.
Decisions about resource allocation should be guided whenever
possible by evidence about effective treatments and interventions. Palliative care should not be exempt from this requirement, and the need to
undertake high-quality research and develop outcome measures is
pressing.

professionals conflict, and where care is limited by the scarcity of


resources, it can be impossible to satisfy all demands.
Four ethical principles (non-maleficence, beneficence, respect
for autonomy and justice) are core tenets for clinical
decision-making, ensuring that important factors have not been
overlooked.1,2 Decisions reached can then be morally justified,
although principles may conflict, leaving professionals to decide the
ultimate course of action.

Planning care
The benefits of helping patients to consider their wishes for care in
the future include the potential for an extension of autonomy
through an advance statement of wishes, to be taken into account
if the patient loses capacity to make such decisions. Such a statement encourages more appropriate clinical decision-making in the
patients best interests (for example, the need for an emergency
admission) as well as reassuring the patient and relatives about
likely future events.3,4 However, the benefits of patient involvement must be balanced against the risk of causing distress to
patients and their families should they prefer not to acknowledge
the inevitability of physical decline and death.3e5 Professionals
who work with patients to plan their care must also be realistic
about what might be possible.3e5 For example, admission to the
local hospice for terminal care will not be possible if all the beds are
full at the time admission is needed.
At one end of the spectrum of care planning, professionals can
answer the questions of patients and relatives about likely
possible events and the services that are available locally. Such
discussions may highlight the need for referral to other agencies
(e.g. for a social care package) or indicate that anticipatory
prescribing would be appropriate (if home is the preferred place
of death).4
Some patients hold such strong preferences for their future care
that they wish to make a formal advance decision to refuse treatment (ADRT) (possibly as well as an advance statement of wishes).
Healthcare professionals must take the content of such documents
(if available) into account when they have to make decisions once
the patient has lost the mental capacity to be involved, and in some
circumstances an ADRT is legally binding.3e5 Patients also have
the option of formally nominating a proxy decision-maker who will
be involved with decisions about healthcare once they have lost
capacity for this, but such proxies have status only if formally
registered with the Office of the Public Guardian.4,5
At the other end of the spectrum of care planning, clinical
practice demonstrates an urgent need for a proactive approach to
decision-making for frail patients who have made no formal

Keywords advance care planning; assisted dying; capacity; double


effect; withdrawing/withholding treatment

Introduction
Caring for patients nearing the end of their lives poses many
challenges as professionals strive to make decisions that are
morally justified. Where the wishes of patients, relatives and

Victoria J Wheatley FRCP MA is a Consultant in Palliative Medicine in


Cwm Taf Local Health Board, South Wales, UK. She qualified from the
University of Birmingham Medical School and trained in general and
palliative medicine in the West Midlands and South Wales. She has an
MA in the ethics of cancer and palliative care from Keele University.
Competing interests: none declared.
Ilora G Finlay FRCP FRCGP is Professor of Palliative Medicine at Cardiff
University and Velindre Hospital, Cardiff, UK. She is Course Director of
the Certificate/Diploma/MSc programmes in palliative care and
palliative medicine at Cardiff University. She is a member of the BMA
Ethics Committee and a member of the House of Lords. Competing
interests: none declared.

MEDICINE 39:11

General Medical Council guidance on end-of-life care issued in


2010
The challenges and possible benefits of advance care planning
for patients requiring palliative care
Accurate information about prescribing decisions at the end of
life and assisted dying, to inform clinicians in the context of
the on-going public debate within the UK

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SOCIAL AND ETHICAL ISSUES

advance statement and have not nominated a proxy decisionmaker. This is exemplified by the admission of nursing home
patients to hospital following a non-specific deterioration in their
condition, with subsequent death on an acute ward. In the
majority of these cases, the patient would have received much
more appropriate terminal care in the nursing home, with staff
receiving support from the local primary and specialist palliative
care teams. These decisions must be informed by as much
information as is possible to discover what the patient would
have wanted, coupled with efforts to restore the patients ability
to be involved in discussions.3,4 All decisions made for patients
without the necessary mental capacity to be involved must be
made in the patients best interests (i.e. to achieve overall
benefit).4,5

balanced against the risks posed to others of shortcuts in care


and undue influence on the many vulnerable patients who
already fear being burdensome, and the difficulties in assessing
capacity (which is frequently impaired to some extent) for such
a momentous decision.1,11
There are many practical problems with the systems that are
supposed to regulate assisted dying in other countries. Pragmatism suggests that any scrutiny of clinicians and procedures
ought to occur before the death of the patient (not afterwards as
in the Netherlands and Oregon)12,13 and that lethal medications
should not be left unsupervised, to prevent diversion into the
community should the patient die naturally.13

Cardiopulmonary resuscitation (CPR)

Although all clinicians have to make difficult decisions about


withholding or withdrawing treatment, these are particularly
common when caring for patients entering the very terminal
phase, in the absence of reversible causes of deterioration.
Symptom control and comfort are paramount, and all interventions must further this goal. Interventions that do not contribute
to comfort and are not effective at prolonging life are, by definition, futile and should cease.1,4,5 Decisions to withdraw treatments must be explained to relatives and carers, who may
otherwise infer that it was the lack of these measures (rather than
the underlying disease) that caused death.4,5 They may also feel
that professionals are giving up on the patient, so it is crucial to
explain the importance of on-going comfort measures and that,
although priorities may have changed, the patients needs are
still at the forefront of care.4

Withholding and withdrawing treatment

A decision about the appropriateness of attempting CPR has to be


made and reviewed regularly for those with life-threatening
disease, because the pathophysiology of all expected deaths
involves a cardiorespiratory arrest and sudden irreversible
deterioration may occur unexpectedly.1,6,7
For some patients it is very clear that attempting CPR would
be physiologically futile. It might also cause psychological
distress to others, lead to an undignified death for the patient and
deflect the duty cardiac arrest team away from other patients.6
Overall, the chances of a patient with advanced malignant
disease surviving a cardiorespiratory arrest are very limited.8
If it is unclear whether attempting CPR would be physiologically futile, one must consider what quality and/or length of life
would be valuable to the particular patient. Despite the odds,
some attempts at CPR are successful and achieve a meaningful
extension of life, for example, for the patient awaiting a first
grandchild.7,9 Decisions about what quality of life would be
valuable to the patient should be made by the patient.4 If the
patient is unable to discuss this, professionals should seek the
views of those close to him about what he would have
wanted.4e7
Clinicians are not obliged to offer an intervention deemed
physiologically futile. Explicit discussion about CPR with all
patients will cause distress to some and is inappropriate.1,4,6,7
Instead, sensitive discussion can establish an individual
patients awareness of his terminal disease and his preferences
for attention to dignity and comfort measures should irreversible
deterioration occur.4,6

The doctrine of double effect


The doctrine of double effect describes best practice when
balancing the potential benefits of a therapeutic intervention
against the known burdens and possible risks, distinguishing
between intended outcomes (the beneficial effects of an intervention) and outcomes that can be predicted but are unintended
(the inevitable burdens of the treatment, and the possible risks
associated with it).1,3
Evidence has accrued that the appropriate use of medication
such as opioids for symptom control does not shorten life14,15; so
double effect is not euthanasia by the backdoor. However, it
remains important in many areas of clinical practice: for
example, the intended effect of chemotherapy is elimination of
malignant cells, but this benefit must be balanced against the
unintended but predictable risk of death from neutropenic
sepsis.1

Assisted dying
The term assisted dying encompasses the concepts of euthanasia (the deliberate ending of a patients life by lethal injection)
and physician-assisted suicide (the deliberate ending of
a patients life when he takes lethal medications prescribed by
a treating doctor). Patients who ask for assisted dying usually do
so because they fear what lies ahead and believe they will not
have control over their care. They have often witnessed distressing deaths in the past. These requests for euthanasia or
assisted suicide very rarely persist once they have been
addressed and discussed openly.10 Although proponents argue
that a change in the law would give the determined few greater
choice about the place and timing of their death, this must be

MEDICINE 39:11

Palliative sedation
Palliative sedation (sometimes termed terminal sedation) is
very occasionally needed for a patient with intractable
distress,3,16,17 often associated with agitation, in the last days and
hours of life. The intention of palliative sedation must always be
to relieve symptoms, not to cause or hasten the death of the
patient, and the level of sedation must be maintained as lightly as
is compatible with symptom control.17
If at all feasible the possibility of palliative sedation should be
discussed with the patient before it is undertaken, and should

681

2011 Elsevier Ltd. All rights reserved.

SOCIAL AND ETHICAL ISSUES

always be discussed with relatives and carers.3,16,17 If the patient


is judged to be in the last hours or days of life, artificial hydration
is not necessary (as there will be insufficient time for dehydration
to develop). If the patient appears to have a longer prognosis, it
may be appropriate to commence artificial hydration by simple
measures such as subcutaneous or intravenous fluids, or even
artificially maintained nutrition.3,16,17

8 Newman R. Developing guidelines for resuscitation in terminal care.


Eur J Palliat Care 2002; 9: 60e3.
9 Noble S, Hargreaves P, Dingwall A. Successful cardiopulmonary
resuscitation in a hospice. Palliat Med 2001; 15: 440e1.
10 Association for Palliative Medicine of Great Britain and Ireland.
Position statement on assisted dying. http://www.apmonline.org/
documents/128499912889075.pdf (accessed 16 Mar 2011)
11 George RJD, Finlay IG, Jeffrey D. Legalised euthanasia will violate the
rights of vulnerable patients. Br Med J 2005; 331: 684e5.
12 Onwuteaka-Philipsen BD, van der Heide A, Muller MT, et al. Dutch
experience of monitoring euthanasia. Br Med J 2005; 331: 691e3.
13 Finlay IG, Wheatley VJ, Izdebski C. The house of lords select
committee on the assisted dying for the terminally ill bill: implications for specialist palliative care. Palliat Med 2005; 19: 444e53.
14 George R, Regnard C. Lethal opioids or dangerous prescribers? Palliat
Med 2007; 21: 77e80.
15 Association for Palliative Medicine of Great Britain and Ireland.
Position statement on the double effect. http://www.apmonline.org/
documents/128499915346380.pdf (accessed 20 Feb 2011)
16 Morita T, Chinone Y, Ikenaga M, et al. Ethical validity of palliative
sedation therapy: a multicenter, prospective, observational study
conducted on specialized palliative care units in Japan. J Pain
Symptom Manage 2005; 30: 308e19.
17 Association for Palliative Medicine of Great Britain and Ireland.
Position statement on using sedating medication at the end of life.
http://www.apmonline.org/documents/128499917951744.pdf
(accessed 20 Feb 2011)
18 Garrard E. Palliative care and the ethics of resource allocation. Int J
Palliat Nurs 1996; 2: 91e4.
19 World Health Organisation. WHO definition of palliative care. http://
www.who.int/cancer/palliative/definition/en/ (accessed 20 Mar 2011)

How much care?


One of the most difficult issues raised by the need to provide
palliative care within the context of limited resources is how to
decide what should and should not be provided.18 The stated aim
of palliative care is to enhance patients quality of life.2,19 One of
the difficulties inherent in attempting to improve the subjective
experiences of patients in an holistic way is that there is no clear
boundary between what a patient needs and what he might
want.2,18 Attending to both needs and wants will improve his
quality of life. Another difficulty, which clinical research may
resolve over time, is knowing which interventions are actually
beneficial.2 Without outcome measures, it will be difficult for
those commissioning care to justify using scarce resources to
fund interventions that are believed to work but for which no
benefit has been demonstrated.
A

REFERENCES
1 Beauchamp TL, Childress JF. Principles of biomedical ethics. 5th edn.
Oxford: Oxford University Press, 2001.
2 Randall F, Downie RS. Palliative care ethics. A companion for all
specialties. 2nd edn. Oxford: Oxford University Press, 1999.
3 Randall F, Downie RS. End of life choices: consensus and controversy.
Oxford: Oxford University Press, 2010.
4 General Medical Council. Treatment and care towards the end of life:
good practice in decisions making. http://www.gmc-uk.org/static/
documents/content/End_of_life.pdf (accessed 13 Mar 2011)
5 British Medical Association. Withholding and withdrawing
life-prolonging medical treatment. Guidance for decision making. 3rd
edn. Oxford: Blackwell Publishing, 2007.
6 Resuscitation Council (UK), British Medical Association, Royal College
of Nursing. Decisions relating to cardiopulmonary resuscitation.
http://www.resus.org.uk/pages/dnar.pdf (accessed 20 Feb 2011)
7 Willard C. Cardiopulmonary resuscitation for palliative care patients:
a discussion of ethical issues. Palliat Med 2000; 14: 308e12.

MEDICINE 39:11

Practice points
C

682

Proactive planning of care for patients who have lost capacity


can significantly improve the quality of healthcare that these
patients receive at the end of life
Opioids and other drugs given appropriately for symptom
control do not kill the patient
As death approaches, all aspects of care must be reviewed to
avoid futile interventions, and ensure that the patients needs
are met and that symptoms are well controlled

2011 Elsevier Ltd. All rights reserved.

REACTIONS TO LOSS

information if the news is not good.6 How can an inherently


awful experience be made less traumatic?
 Give patients warning that they are about to receive
significant information, so they can choose to prepare
themselves. Evidence suggests that preparation improves
the likelihood of making a smooth transition, and use of
forewarning words such as unfortunately helps patients
assess whether they want more information.7
 Allow patients to have someone with them, if they wish.
Research suggests that about two-thirds of individuals
would want a loved one with them when being told about
a terminal diagnosis.8
 Be aware of patients non-verbal communication, the
speed at which they speak, their tone of voice and the
emotions they exhibit (sad, irritable, anxious, resigned),
and make use of this information. Patients are then more
likely to regard the healthcare professional as an ally.
 Determine what patients already know or believe about
their illness. Research suggests that individuals subjective
feelings about their condition vary and do not relate to
objective severity, so it may be unhelpful to make
assumptions.9
 Determine what patients want to know before you tell
them. Research suggests that most individuals want to
know the truth and detailed information regarding their
illness10 but the level and detail of information required
may vary; and that they do not want the decision of how
much they are told to be made by their family.11 However,
some families insist on deciding whether a patient should
be told the truth. The healthcare practitioner then faces
a dilemma of not wanting to alienate the family, but

Reactions to loss
Isobel Bremner

Abstract
Facing potential loss (of health, bodily functions, independence, a future,
hope for a cure, control) can be overwhelming for all individuals involved,
including healthcare professionals. However, understanding the profound
impact of loss and how it can be managed enables those involved to gain
a sense of control and hopefulness. Doctors can use their relationship
with patient and family to help individuals facing loss to feel heard,
understood and less worried about themselves, their family and their
future. Isolating specific responses to a complex psychosocial event
and conducting research into these is difficult, but many retrospective
and prospective analyses and studies of clinical practice highlight the
significant issues for those working with individuals who are managing
their reaction to a loss.

Keywords bereavement; childrens needs; giving bad news; loss

Giving bad news


Patient and family reactions to bad news
Various models of reaction to bad news have been proposed,
including:
 five stages of dying e Keubler-Rosss interviews with
over 200 dying people found that they pass through stages
of denial, anger, bargaining, depression and acceptance1
 hive of affect e Schneidman suggests that individuals
experience a constant coming and going of feeling,
including acceptance and denial1
 three-stage e individuals may pass through stages of
facing the threat, being ill and acceptance.2
Regardless of which model or research is accepted, there are
several common reactions to bad news for which healthcare
professionals must be prepared (Figure 1). However patients
react, if their doctors have been thoughtful, prepared and
self-aware,2 it is likely that their experience of being told bad
news will be less traumatic. It is a mistake to believe that they
can be made to feel better, but patients whose doctors
demonstrate their awareness of the profound impact of this
conversation will feel understood and valued.3

Common reactions to bad news

Anger

Fear

Despair

Relief
Astonishment

Blame

Disbelief

Gratitude for
doctors honesty
and thoughtfulness

Approaches to the giving of bad news


Research continues to show that healthcare professionals and
patients find the giving and receiving of bad news very stressful.4,5 Professionals are reluctant to give detailed and truthful

Resignation

Anxiety
Need for certainty
Dismay

Over-pessimism
Contradiction

Isobel Bremner MSc DipAdvSW DipGT is an Independent Clinical Supervisor,


Counsellor, Social Worker and Trainer. She qualified from the London
School of Economics, London, UK. Her main interests are clinical
supervision of healthcare and social care professionals, and working
with children and young people. She works for the Candle Project at St
Christophers Hospice, London. Competing interests: none declared.

MEDICINE 39:11

Sympathy for doctors


difficult position
Over-optimism

Figure 1

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2011 Elsevier Ltd. All rights reserved.

REACTIONS TO LOSS




needing to honour the patients right to autonomy. It is


good practice to ask patients, using an interpreter if
necessary, whether they wish their family to mediate for
them with healthcare professionals or whether they want
to be communicated with directly.
Remember that, even in the least stressful situations,
individuals remember only a small proportion of what they
are told. Patients receiving bad news will probably need to
have information repeated, and are likely to feel too
shocked and bewildered to make informed decisions about
treatment or care plans at that time.
Determine and respond to patients key concerns and
hopes, without being unrealistic or falsely reassuring e
preparing for the worst does not stop us hoping for the
best.2 There is evidence that being told bad news with
concern, clarity and a caring attitude, and being given the
time to talk and ask questions in a private setting is
beneficial.12,13
If possible, arrange a follow-up appointment at which
questions can be asked and decisions made.
Provide further sources of patient information (e.g. in the
UK, Macmillan, Motor Neurone Disease Association).
Some research suggests that information-seeking is positively correlated with a feeling of coping well.9
When giving further bad news to patients who are seriously ill, healthcare professionals must be aware that such
patients and their family are likely to be already managing
feelings of grief about, for example, loss of income, loss of
independence, loss of status and changes in body image
(e.g. loss of feeling of sexual attractiveness).

initiating conversations with them and locating them in their


lives.17,18
Risk factors in bereavement
Most individuals face the loss of a significant person at some time
in their life. Grief is a common experience and carries a high risk.
After a major loss, such as the death of a spouse or child, up to
one-third of individuals suffer impaired physical or mental health
or both,7 and there is clear evidence that the bereaved are at
greater risk of dying, particularly by suicide, than the nonbereaved.19 Healthcare professionals must be aware of the situations in which bereavement carries a greater risk (Table 1).7,19e21
Managing bereaved individuals at risk: there is evidence that
bereavement counselling is effective and can prevent some of the
psychiatric and physical complications of grieving. There is less
clear evidence for which type of counselling is most effective.19,20

Situations in which bereavement carries a high risk


Type of death
C
C
C
C

Kinship to the deceased


C
C
C

Death of a child
Death of a parent in childhood or adolescence
Death of spouse

History of the bereaved

Bereavement

The grief process


There is much debate about the nature of grief; for example,
whether it helps individuals to let go or to hold on, whether
models of grief for men and women should be different, and
whether grief is a universal experience. Some key concepts useful
when working with the bereaved are as follows.
 Grief is a process, not an event.
 Grieving takes time e usually longer than expected or
hoped.
 Grief is energy-consuming and exhausting. Four tasks of
mourning have been identified e recognizing the reality
of the loss, experiencing the pain of grief, adjusting to an
environment in which the deceased is missing, and
emotionally relocating the deceased and moving on.14
 Both too much grief and too little grief can be harmful.
Bereaved individuals need times when they face their grief,
and times when they look to the future and avoid it.15
 Common feelings and experiences have been described as
the phases of mourning e initial shock, numbness and
disbelief, intense and overwhelming pangs of grief
(sadness, guilt, pining, searching, anger, fear, anxiety and
panic), disorganization, despair, depression and loss of
meaning, and final reorganization and adjustment.16
 The grief process can be facilitated when bereaved individuals construct a relationship with the deceased by remembering them, experiencing them, retaining keepsakes,

MEDICINE 39:11

Suicide
Murder or manslaughter
Sudden or untimely death
Multiple deaths or death in a disaster

C
C
C
C
C

Mental illness (the evidence is mixed e for example, some


studies have found that a history of depression does not
necessarily correlate positively with increased risk of
depression following bereavement, whereas others have
shown that it increases the risk twofold)
Dependence on drugs or alcohol
Significant losses in childhood
Ambivalent relationship with the deceased
Clinging or anxious attachment to the deceased
Previous suicide attempts or threats

Circumstances of the bereaved after the death


C
C

C
C
C
C

Perceived lack of social support


Concurrent stressors (e.g. poor physical health, divorce, loss
of employment)
Reduced income
Caring for dependents
Dependence on others
Higher-risk type of grief reaction (e.g. a high level of distress
early in bereavement is correlated with longer-term
complications)

Patient information
The Childhood Bereavement Network website lists services for
bereaved children and young people in England.
www.childhoodbereavementnetwork.org.uk
Table 1

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2011 Elsevier Ltd. All rights reserved.

REACTIONS TO LOSS

However, the strongest evidence is that targeted and specific


interventions effectively diminish complicated grief symptoms,
grief-related depressions and post-traumatic disorders.21e23
Bereavement counselling and support services are available in
many countries and are often staffed by specially trained
volunteers.
Many hospices and palliative care teams have risk assessment
processes and bereavement follow-up systems; in the UK, the
Hospice Information Service publishes an annual directory of
these. Some hospitals now provide a bereavement officer or
counselling service.
In the UK, if the death occurred in the care of an organization
that does not provide bereavement follow-up, Cruse Bereavement Care can provide information about local and national
services. There are also organizations providing support for
particular groups; for example, SANDS for those bereaved by
a stillbirth or neonatal death, SAMMS for murder or
manslaughter, the Child Death Helpline and Compassionate
Friends for bereaved parents, and Roadpeace for those bereaved
by a road traffic crash.

preparing them, giving them appropriate information, reassuring


them, giving them opportunities to express their feelings and,
particularly, communicating explicitly with them. Adolescents
are at particular risk of feeling isolated in their grief.29
Children of all ages must be prepared for a death as much as
adults. If a parent is going to die, their children need an opportunity to say goodbye while they are well enough to be reassuring, loving and responsive. Children need to ask questions
and must be given explicit permission to do so; they can have
misconceptions about illness (e.g. that cancer is contagious) or
may believe that they caused the illness through difficult
behaviour. They must be reassured about what aspects of their
lives will remain constant and secure (e.g. whether they will be
able to remain at the same school). Children can be helped also
by seeing the dead body (after preparation), attending the funeral
and retaining keepsakes that belonged to the deceased.
In the UK, several organizations provide specific help for
bereaved children, though none is available nationwide. The
Childhood Bereavement Network can provide information on the
availability of services.
Research suggests that bereaved parents can both grieve and
provide good care for their children,28 but may need reassurance
and support to enable them to do so.
A

How can the bereaved be helped?


 Use clear, unambiguous language (e.g. do not say lost
when the meaning is died).
 Help the bereaved to obtain the information that they need
to understand why their loved one died, and to say
goodbye to the body of the deceased if they wish (having
prepared them for what they may see). There is evidence
that viewing the body enables the bereaved to begin to
accept that the death has happened24 and that they may
find it beneficial.25
 Individuals who have never before experienced a bereavement may need advice about what should be done; in the
UK, the government website Directgov (www.direct.gov.
uk) is very helpful.
 When the death was traumatic, health professionals may try
to protect the bereaved by not telling them the full facts, or by
discouraging them from viewing the body.26 Many bereaved
individuals do not find this helpful. In the UK, there is a very
helpful guide, Help is at Hand, for those managing suicide or
sudden, traumatic death, which is available from the
Department of Health website (www.dh.gov.uk).

REFERENCES
1 Sheldon F. Psychosocial palliative care. Good practice in the care of
the dying and bereaved. Cheltenham: Stanley Thornes, 1997.
2 Buckman R. How to break bad news: a guide for health-care
professionals. London: Papermac, 1992.
3 Meitar D, Karnieli-Miller O, Eidelman S. The impact of senior medical
students personal difficulties on their communication patterns in
breaking bad news. Acad Med 2009; 84: 1582e4.
4 Taylor E. How best to communicate bad news over the telephone.
EoLC 2007; 1: 30e7.
5 Brown R, Dunn S, Byrnes K, Morris R, Heinrich P, Shaw J. Doctors
stress responses and poor communication performance in simulated
bad-news consultations. Acad Med 2009; 84: 1595e602.
6 Dibble JL, Levine TR. Breaking good and bad news: direction of the
mum effect and senders cognitive representations of news valence.
Comm Res 2010; 37: 703e22.
7 Parkes CM, Markus A. Coping with loss. London: BMJ Books, 1998.
8 Marwit SJ, Datson SL. Disclosure preferences about terminal illness: an
examination of decision-related factors. Death Stud 2002; 1: 1e20.
9 Earll L, Johnston M, Mitchell E. Coping with motor neurone disease e an
analysis using self-regulation theory. Palliat Med 1993; 7(suppl 2): 21e30.
10 Wittmann E, Beaton C, Lewis WG, et al. Comparison of patients
needs and doctors perceptions of information requirements related
to a diagnosis of oesophageal or gastric cancer. Eur J Cancer Care
2011; 20: 187e95.
11 Benson J, Britten N. Respecting the autonomy of cancer patients
when talking with their families: qualitative analysis of semistructured interviews with patients. Br Med J 1996; 313: 729e31.
12 Freidrichsen MJ, Strang PM. Cancer patients interpretations of verbal
expressions when given information about ending cancer treatment.
Palliat Med 2002; 4: 323e30.
13 Fallowfield L, Jenkins V. Communicating sad, bad and difficult news in
medicine. Lancet 2004; 363: 312e9.

Children
The research evidence is complex and contradictory but it is
likely that children and adolescents who experience bereavement
are more likely to suffer depression and experience higher levels
of emotional disturbance and more problems at school than their
non-bereaved counterparts. This is particularly the case if they
have experienced parental bereavement and other consequent
losses, such as changes of carer, school or accommodation.27
Like adults, they are more vulnerable to psychiatric disorders,
and attempted suicide is more common.7 Most adults want to
protect children from painful aspects of life and may assume that
not telling them about potential or actual loss is helpful, but
research and clinical experience suggest otherwise.28 It is
impossible to protect children and adolescents from the traumas
of loss and grief, but it is possible to equip them to cope with
these traumas. This can be achieved by including them,

MEDICINE 39:11

685

2011 Elsevier Ltd. All rights reserved.

REACTIONS TO LOSS

14 Worden JW. Grief counselling and grief therapy. A handbook for the
mental health practitioners. 2nd edn. Tavistock: Routledge, 1993.
15 Stroebe M, Schut H. The dual process model of coping with bereavement: rationale and description. Death Stud 1999; 23: 197e224.
16 Parkes CM. Bereavement: studies of grief in adult life. Harmondsworth: Penguin, 1998.
17 Walter T. A new model of grief: bereavement and biography. Mortality
1996; 1: 7e25.
18 Klass D, Silverman PR, Nickman SL, eds. Continuing bonds, new
understandings of grief. Philadelphia: Taylor & Francis, 1996.
19 Stroebe MS, Stroebe W, Hanson RO, eds. Handbook of bereavement,
theory, research and intervention. New York: Cambridge University
Press, 1993.
20 Jacobs S. Pathologic grief, maladaptation to loss. Arlington, UA:
American Psychiatric Press, 1993.
21 Lobb EA, Kristjanson L, Aoun S, Monterosso L, Halkett GK, Davies A.
Predictors of complicated grief: a systematic review of empirical
studies. Death Stud 2010; 34: 673e98.
22 Wittouck C. The prevention and treatment of complicated grief:
a meta-analysis. Clin Psychol Rev 2011; 31: 69e78.
23 Stroebe M, Hannson RO. Handbook of bereavement research and
practice. Advances in theory and intervention. Washington DC: American Psychological Association, 2008.
24 Kissane DW, Bloch S, McKenzie DP. Family coping and bereavement
outcome. Palliat Med 1997; 11: 191e201.
25 Chapple A, Ziebland S. Viewing the body after bereavement due to
a traumatic death: qualitative study in the UK. BMJ 2010; 340:
1017.

MEDICINE 39:11

26 Wright B. Sudden death: a research base for practice. 2nd edn.


Edinburgh: Churchill Livingstone, 1996.
27 Ribbens McCarthy J. Young peoples experiences of loss and
bereavement. Maidenhead: Open University Press, 2006.
28 Christ CH. Healing childrens grief. Surviving a parents death from
cancer. New York: Oxford University Press, 2000.
29 Bremner I. Working with adolescents. Bereavement Care 2000; 19: 16e8.
FURTHER READING
Aranda S, Milne D. Guidelines for the assessment of complicated
bereavement risk in family members of people receiving palliative
care. Melbourne: Centre for Palliative Care, 2000.
Oliviere D, Hargreaves R, Monroe B. Good practices in palliative care:
a psychosocial perspective. Aldershot: Ashgate, 1998.
Parkes CM, Markus A. Coping with loss. London: BMJ Books, 1998.

Practice points
C

C
C

686

Ask patients and families what they want to know about the
illness and what they need to help them cope
Listen carefully and respond thoughtfully
Grief can be life-threatening or ultimately life-enhancing, but is
almost always emotionally painful and prolonged
Help patients and families remember that children must be
involved and that it can be helpful for them to witness adults
openly expressing appropriate grief

2011 Elsevier Ltd. All rights reserved.

SELF-ASSESSMENT

Self-assessment/CPD
This CPD section was prepared by Eric Beck

Questions

We hope you enjoy the CPD section. Let us know your views
by email to: medicine@medicinepublishing.co.uk

FRCP FRCP(Ed) FRCP(Gl)

Select the ONE single best answer from the five alternatives:

1 A 72-year-old bachelor without family or friends had


metastatic small cell lung cancer that had been treated
with several courses of chemotherapy. He was
readmitted to hospital, at the request of his GP, who
considered his case to be terminal as the various
support agencies could no longer cope adequately for
him at home.
He complained of bone pain, agitation and breathlessness with difficulty expectorating secretions from the
upper respiratory tract.
Regarding his further management it is TRUE that:
A

a written decision in the notes do not resuscitate


(DNR) cannot be made by a single member of the
multidisciplinary team (MDT) alone

treatment of dyspnoea by morphine is contraindicated because of its respiratory depressant effect

the most important means to deal with retained


secretions is by regular suction

D
E

the fear of being alone at the time of death is second


only to the fear of a painful death

when a dying patient is identified as requiring spiritual


care it is the first duty of the healthcare professional to
make a referral to the hospital chaplaincy

in NHS hospitals provision is made through the chaplaincy for availability of representatives of all religions
to ensure that each can be asked to see a patient of their
own faith

a healthcare professional with strong religious beliefs


should not hesitate to express them if asked by a dying
patient

4 Regarding the process of grieving in a bereaved person it


is generally considered to be TRUE that:
A

in counselling children when a parent is about to die


they should be given explicit permission to ask any
question

midazolam to treat restlessness may cause agitation


if given in high doses

In the majority of cases it is better for a bereaved child


not to attend the funeral of a deceased parent

blood biochemistry is an irrelevance when deciding


appropriate treatment

the majority of individuals suffer impaired physical or


mental health or both

the bereaved are at no greater risk of dying by suicide


than the non-bereaved

after a traumatic death the bereaved find it helpful to be


advised not to view the body

2 Regarding ethical issues in palliative care it is TRUE


that:
A

the benefit of chemotherapy in eliminating malignant


cells when balanced against the risk of death from
neutropenic sepsis is not regarded as an example of
double effect

5 Regarding aspects of palliative care in patients with


non-malignant disease it is TRUE that:

opioids are frequently prescribed in the expectation


that this will hasten death

cyclizine is the anti-emetic of choice in heart failure

a formal advance decision to refuse treatment


(ADRT), made when the patient is competent, is
legally binding under statute law

an implanted cardioverter-defibrillator (ICD) should be


reprogrammed in a patient accepted to be in end-stage
heart failure

advance directives (ADRs) are as likely to express


a wish for treatment to be given as to withhold it

a hand-held fan is of no value in combating breathlessness in chronic cardiorespiratory disorders

the nomination of a proxy decision-maker by a patient,


anticipating loss of mental capacity, only carries status
if registered with the Office of the Public Guardian

pain occurs in a minority of patients with multiple


sclerosis (MS)

cognitive impairment is not a feature of Parkinsons


disease

3 Regarding spiritual and cultural issues at the end of


life it is TRUE that:
A

For the answers and for more questions,


go to:

spirituality is defined as the beliefs of the religion to


which the patient belongs

MEDICINE 39:11

www.medicinecpd.co.uk

687

2011 Published by Elsevier Ltd.

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