Beruflich Dokumente
Kultur Dokumente
Palliative Care
INTRODUCTION
635
PaulWKeeley
SimonNoble
PHYSICAL PROBLEMS
Pain control
LauraChapman
JohnEllershaw
639
645
648
651
VictoriaJWheatley
IloraGFinlay
AshiqueAhamed
SamHjelmelandAhmedzai
DamienJ McMullan
EmmaLundy
ClareWhite
NeilJackson
678
DavidMitchell
PaulWKeeley
674
KarenHSimpson
668
SimonNoble
BeeWee
RichardHillier
664
AmyCGadoud
MiriamJJohnson
DavidClark
FionaGraham
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
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
Honorary Vice-presidents
Editorial Board
Eric Beck MBBS FRCP FRCPG FRCPE
Postgraduate Dean, East of England, Cambridge and GP, King Edward Road
Surgery, Northampton
INTRODUCTION
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.
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
MEDICINE 39:11
635
INTRODUCTION
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.
MEDICINE 39:11
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INTRODUCTION
Figure 1
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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INTRODUCTION
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.
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
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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.
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
Pharmacological management
Opioid-responsive pain
Chronic cancer pain requires appropriate and regular use of
analgesics in a structured, systematic manner (Table 2).
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PHYSICAL PROBLEMS
Assessing pain
Strong opioid
+ non-opioid
adjuvants
ree
Step tw
Non-opioid
adjuvants
Step on
Figure 1
Elicit the patients (and carers) fears, concerns and beliefs about the pain,
and pharmacological and non-pharmacological interventions.
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.
Table 2
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Step th
Weak opioid
+ non-opioid
adjuvants
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PHYSICAL PROBLEMS
Comment
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
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Vomiting
Dysphagia
Weakness
Unconscious patient
Cachexia
Discomfort
Large-volume injections
Patient fears injections
Table 4
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PHYSICAL PROBLEMS
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PHYSICAL PROBLEMS
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.
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.
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PHYSICAL PROBLEMS
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Practice points
C
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PHYSICAL PROBLEMS
Karen H Simpson
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.
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
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Table 1
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PHYSICAL PROBLEMS
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Contraindications
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reflect
disease
Table 2
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).
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may
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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.
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
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.
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.
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PHYSICAL PROBLEMS
Class
Dose (per 24 h)
Indication
Metoclopramide
Prokinetic
30e80 mg
Gut stasis
Cyclizine
Antihistamine
150 mg
Haloperidol
Butyrophenone
1.5e10 mg
Levomepromazine
Phenothiazines
12.5e50 mg
Ondansetron
5-HT3 receptor
antagonist
8e16 mg
Granisetron
5-HT3 receptor
antagonist
1e2 mg
Dexamethasone
Corticosteroid
8e16 mg
Hyoscine
butylbromide
Anticholinergic
60e300 mg
Octreotide
Somatostatin
analogue
250e750 mg
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
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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.
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Practice points
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PHYSICAL PROBLEMS
Breathlessness in
advanced disease
Patient experience
Ashique Ahamed
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.
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
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blunted hypercapnic ventilatory drive will lead to acute hypercapnic respiratory failure (for therapeutic consequences see below).
Example of pathology
Pulmonary
Airflow obstruction
Reduced lung
compliance
Example of disease
Table 1
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
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Table 2
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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
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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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
?
Table 4
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
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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
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9
10
11
12
13
14
15
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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
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Psychiatric conditions in
palliative medicine
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.
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
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
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PHYSICAL PROBLEMS
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
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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
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PHYSICAL PROBLEMS
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
REFERENCES
1 Pereira J, Hanson J, Bruera E. The frequency and clinical course of cognitive
impairment in patients with terminal cancer. Cancer 1997; 79: 835e42.
2 Leonard M, Agar M, Mason C, Lawlor P. Delirium issues in palliative
care settings. J Psychosom Res 2008; 65: 289e98.
3 Leonard M, Spiller J, Keen J, MacLullich A, Kamholtz B, Meagher D.
Symptoms of depression and delirium assessed serially in palliativecare inpatients. Psychosomatics 2009; 50: 506e14.
4 Ross CA. CNS arousal systems: possible role in delirium.
Int Psychogeriatr 1991; 3: 353e71.
5 Breitbart W, Chochinov H, Passik S. Psychiatric symptoms in palliative
medicine 2009.
6 Williams MA. Delirium/acute confusional states: evaluation devices in
nursing. Int Psychogeriatr 1991; 3: 301e8.
7 Breitbart W, Rosenfeld B, Roth A, Smith MJ, Cohen K, Passik S.
The memorial delirium assessment scale. J Pain Symptom Manage 1997;
13: 128e37.
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.
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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.
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Emergencies in palliative
medicine
Andrew Fowell
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.
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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
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Neurological problems
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
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Table 1
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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.
FURTHER READING
Regnard C, Tempest S. A guide to symptom relief in advanced disease.
4th edn. Hale: Hochland & Hochland, 1998.
Practice points
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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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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.
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.
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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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
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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.
Chronic
Table 1
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PHYSICAL PROBLEMS
Fatigue
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.
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
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PHYSICAL PROBLEMS
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.
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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
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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
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).
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.
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
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
Table 1
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PHYSICAL PROBLEMS
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.
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.
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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
Figure 5
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PHYSICAL PROBLEMS
Pruritus
Step 1
Step 2
Step 3
General measures
Cholestasis
Hodgkins lymphoma
Polycythaemia vera
Spinal opioids induced
pruritus
Paraneoplastic pruritus
Origin unknown
Neuropathic pruritus
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
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.
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PHYSICAL PROBLEMS
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).
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.
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
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C
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C
C
C
C
C
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Table 3
Table 1
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Table 2
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PHYSICAL PROBLEMS
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
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.
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David Mitchell
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.
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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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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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.
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
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
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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
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
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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
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.
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REACTIONS TO LOSS
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.
Anger
Fear
Despair
Relief
Astonishment
Blame
Disbelief
Gratitude for
doctors honesty
and thoughtfulness
Resignation
Anxiety
Need for certainty
Dismay
Over-pessimism
Contradiction
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REACTIONS TO LOSS
Death of a child
Death of a parent in childhood or adolescence
Death of spouse
Bereavement
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Suicide
Murder or manslaughter
Sudden or untimely death
Multiple deaths or death in a disaster
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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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REACTIONS TO LOSS
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,
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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.
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Practice points
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C
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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
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
Select the ONE single best answer from the five alternatives:
D
E
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
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