Vol. 34 No.

4 October 2007

Journal of Pain and Symptom Management

393

Original Article

Patterns of Social, Psychological, and Spiritual

Decline Toward the End of Life in Lung
Cancer and Heart Failure
Scott A. Murray, MBChB, MD, FRCGP, FRCP, Marilyn Kendall, BA, PhD,
Elizabeth Grant, MA, PhD, Kirsty Boyd, MBChB, FRCP, MMedSci,
Stephen Barclay, MA, MSc, FRCGP, MD, and Aziz Sheikh, BSc, MBBS, DRCOG,
DCH, FRCP, MSc, MD, FRCGP
St. Columbas Hospice (S.A.M.), and Primary Palliative Care Research Group (S.A.M., M.K., L.G.,
K.B., A.S.), Division of Community Health Sciences: General Practice Section, University of
Edinburgh, Edinburgh; and General Practice and Primary Care Research Unit (S.B.), Department of
Public Health and Primary Care, University of Cambridge, Cambridge, United Kingdom

Abstract
Typical trajectories of physical decline have been described for people with end-stage disease. It
is possible that social, psychological, and spiritual levels of distress may also follow
characteristic patterns. We sought to identify and compare changes in the psychological,
social, and spiritual needs of people with end-stage disease during their last year of life by
synthesizing data from two longitudinal, qualitative, in-depth interview studies
investigating the experiences and needs of people with advanced illnesses. The subjects were
48 patients with advanced lung cancer (n 24) and heart failure (n 24) who gave
a total of 112 in-depth interviews. Data were analyzed within individual case studies and
then cross-sectionally according to the stage of physical illness. Characteristic social,
psychological, and spiritual end-of-life trajectories were discernible. In lung cancer, the social
trajectory mirrored physical decline, while psychological and spiritual well-being decreased
together at four key transitions: diagnosis, discharge after treatment, disease progression, and
the terminal stage. In advanced heart failure, social and psychological decline both tended to
track the physical decline, while spiritual distress exhibited background fluctuations. Holistic
end-of-life care needs to encompass all these dimensions. An appreciation of common patterns
of social, psychological, and spiritual well-being may assist clinicians as they discuss the
likely course of events with patients and carers and try to minimize distress as the disease
progresses. J Pain Symptom Manage 2007;34:393e402. 2007 U.S. Cancer Pain
Relief Committee. Published by Elsevier Inc. All rights reserved.

The Chief Scientist Office of the Scottish Executive

funded the two original research studies. The funding body played no part in the design of the study,
nor in the collection and interpretation of the
data, nor in the preparation of the manuscript.
Note: SM, MK, EG, and KB designed the original
studies, MK and EG completed the interviews. AS
and SM conceived the idea for this analysis. MK
and SM take responsibility for the integrity of the
data and the accuracy of the analysis. All authors
2007 U.S. Cancer Pain Relief Committee
Published by Elsevier Inc. All rights reserved.

participated in data interpretation and writing the

manuscript.
Address reprint requests to: Scott A. Murray, FRCGP,
Primary Palliative Care Research Group, General
Practice Section, Division of Community Health Sciences, The University of Edinburgh, 20 West Richmond Street, Edinburgh EH8 9DX, United
Kingdom. E-mail: Scott.Murray@ed.ac.uk
Accepted for publication: December 14, 2006.
0885-3924/07/$esee front matter
doi:10.1016/j.jpainsymman.2006.12.009

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Vol. 34 No. 4 October 2007

Key Words
Palliative care, disease trajectories, end of life, cancer, heart failure, spiritual distress

Introduction
Progressive physical decline in advanced
disease is well documented, with distinct trajectories described for people with different progressive illnesses.1e5 Consideration of these
trajectories may help clinicians anticipate
likely physical needs in the last year of life,
and plan care that integrates disease-modifying and palliative management. However, physical needs tend to occupy center stage and it is
important to be aware that people with progressive malignant and nonmalignant illnesses
have multidimensional needs.6 Furthermore,
the World Health Organization (WHO) argues
that palliative care seeks to prevent and relieve
suffering through early identification, assessment, and management of pain and other
problems, whether physical, psychosocial, or
spiritual.4 Quality of life, and of death, is modified by all domains of personhood.7 Saunders
has described the multidimensional suffering
of total pain as a lack of personal integrity
and inner peace.8
In reality, social needs may be pressing, but
neglected.9 From the moment someone learns
that cure is not possible, that person sees
himself or herself differently and is perceived
differently by those around them.10 Psychological distress, both anxiety and depression, are
well documented in advanced illness, and frequently underdiagnosed.11,12 The existential
or spiritual domain is another determinant of
quality of life13 that can influence treatment
decisions.14 Belief systems and spirituality (defined as existential rather than religious belief)
are important to 70%e80% of the general
population in the UK15 and to 90% of elderly
patients in the United States.16 In cancer and
palliative care, spiritual distress is associated
with psychosocial needs,17 communication issues,18 death anxiety,19 and despair.20 Near
the end of life, issues relating to the meaning
and purpose of life have been found to be
more important than physical symptoms, physical well-being or support, and may be responsive to palliative care interventions.21,22
Defining and assessing spiritual needs is

difficult;23 the Institute of Medicine24 has

advocated adopting the following broad
definition:
The needs and expectations which humans
have to find meaning, purpose and value
in their life. Such needs can be specifically
religious, but even people who have no religious faith or are not members of an organized religion have belief systems that give
their lives meaning and purpose.24
Emanuel and Emanuel have described
a therapeutic framework that explicitly expands physical and psychological considerations to include social relationships, hopes,
and spiritual and existential beliefs.25 These dimensions are not distinct; anxiety, for example, can lower the threshold for pain. To aid
our understanding of the total lived experience and the interdependence of body,
mind, and spirit which underlies human suffering, we sought to explore whether there
are common trajectories of social, psychological, and spiritual well-being from the time a
diagnosis of advanced disease is made.26

Methods
Qualitative longitudinal research can, by
systematically collecting, organizing, and interpreting textual data, contribute to a broad
understanding of the social and illness experience of individuals in their natural context,27
and through so doing, help generate theories
that link these experiences.28 The integration
of findings from qualitative studies about
patient experiences has been proposed as
a way of developing effective health care
interventions.29,30
We analyzed data from two recently completed, longitudinal, in-depth interview studies
of patients with advanced disease.31,32 (Both of
these original studies were approved by the
local research ethics committee.) As the methodological approach to recruitment, data generation and analysis was comparable in both
studies, data for the present analysis were synthesized by examining all the interviews as

Vol. 34 No. 4 October 2007

Social, Psychological, and Spiritual Trajectories

a combined group for evidence of typical patterns of change in social, psychological, and
spiritual needs as the illnesses progressed.
In the first study, undertaken between 2000
and 2001, 20 people recently diagnosed with
inoperable lung cancer and 20 people with
New York Heart Association Grade 4 heart
failure were recruited by hospital clinicians
from their outpatient clinics. The participants
were chosen purposively to represent the local
demography of each condition with respect to
age, sex, deprivation category, living alone or
with a carer, and treatment. A social scientist
(MK) conducted in-depth interviews at threemonthly intervals for up to a year with the
patients in their own homes. She asked patients to talk about the main issues they were
facing generally, and their views about the
care and support they were receiving. The
patients with lung cancer had a mean age of
65 years; 15 lived with a carer, and 5 were alive
at the end of the study. The patients with heart
failure had a mean age of 74 years; 11 lived
with a carer, and 7 were alive at the end of
the study. The mean WHO performance status
at first interview was 2.0 for lung cancer and
2.6 for heart failure patients.33
In the second study, undertaken between
2002 and 2003, 20 patients with a wide range
of advanced malignant and nonmalignant
illnesses were recruited by their general practitioners from three contrasting practices in
southeast Scotland. Four of these patients
had lung cancer (mean age 73 years), of
whom three lived alone, and two died during
the study. Four had heart failure (average age
86 years), of whom three lived alone, and
one died during the study. The mean WHO
performance status at first interview was 2.2
for both lung and heart patients. A social scientist (EG) conducted serial in-depth interviews with the patients at home, asking them
to talk about the main issues they were facing.
We specifically explored spiritual needs in this
second study and emerging themes were considered in the light of the findings from our
earlier work. The interview data are summarized in Tables 1 and 2.

Data Generation and Analysis

In both studies, the interviews were taperecorded and transcribed, together with accompanying field notes. Analysis was ongoing

395

Table 1
Details of Patients with Lung Cancer
Code
Name

Age Sex

Informal
Carer

Number Status at the

of Patient End of the
Interviews
Study

Mr. LA
Mrs. LB

87
72

M
F

Warden
Husband

4
1

Mr. LC

66

Sister

Mr. LD

73

Wife

Mr. LE

71

Mr. LF
Mrs. LG

55
77

M
F

4
1

Alive
Died

Mrs. LH
Mr. LI
Mrs. LJ

66
71
75

F
M
F

Sister lives
separately
Wife
Cousin
lives away
Husband
Wife
Husband

Alive
Withdrew
due to
husband
Withdrewd
moved away
Withdrew
due to wife
Died

2
4
1

Mr.
Mr.
Mr.
Mr.
Mr.

LK
LL
LM
LN
LO

64
48
71
54
76

M
M
M
M
M

Wife
Wife
Wife
Wife
Wife

4
2
1
1
3

Ms. LP
Ms. LQ
Ms. LR

44
64
43

F
F
F

Husband
Husband
Lives alone

4
3
1

Ms. LS
Ms. LT

58
79

F
F

Husband
Husband

2
2

Mrs. LU
Mr. LV
Mr. LW
Mr. LX

68
80
71
75

F
M
M
M

Lives alone
Lives alone
Wife
Lives alone

2
2
2
1

Died
Alive
Withdrewd
moved away
Alive
Died
Died
Died
Withdrewd
ill from
treatment
Alive
Died
Withdrewd
ill
Died
Withdrew
(in hosp
ca bowel)
Died
Alive
Alive
Died

throughout the fieldwork to allow emergent

themes to be fed back into further rounds of
data collection, this being assisted by the qualitative computer package QSR NVivo. We used
the techniques of thematic and narrative analyses, as we frequently recognized narratives in
the transcripts.34 Regular review and discussion of the evolving themes by the same core
multidisciplinary steering group, with members drawn from generalist and specialist medical, nursing, social work, and theological
backgrounds in both studies, contributed to
data synthesis and interpretation.
In both studies, we identified that most patients had problems in the physical, social, psychological, and spiritual domains at various
times over the course of the illness. In this
analysis, we focused on the characteristics of
their social, psychological, and spiritual needs

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Murray et al.

Vol. 34 No. 4 October 2007

Table 2
Details of Patients with Cardiac Failure
Code Name

Age

Sex

Informal Carer

Number of Patient Interviews

Mrs. HA
Mr. HB
Mr. HC
Mrs. HD
Mrs. HE
Mr. HF
Mr. HG
Mr. HH
Mrs. HI
Mr. HJ
Mr. HK
Mr. HL
Mr. HM
Mrs. HM
Mrs. HO
Mr. HP

65
92
85
57
83
79
73
78
66
74
79
66
76
89
79
70

F
M
M
F
F
M
M
M
F
M
M
M
M
F
F
M

Lives with husband

Daughter lives together
Daughter lives separately
Aunt lives separately
Warden; lives alone
Wife
Wife
Wife
Husband and daughter
Wife
Wife; separated, lives alone
Wife
Wife
Daughter; lives separately
Daughter; lives together
Wife

4
4
1
4
2
4
4
2
2
4
4
4
1
2
2
1

Mr. HQ
Mrs. HR
Mrs. HS
Mrs. HT
Mr. HU
Mrs. HV
Mrs. HW
Mrs. HX

66
74
80
66
77
78
91
100

M
F
F
F
M
F
F
F

Wife
Son; lives alone
Alone; has children
Sister; lives alone
Partner
Alone
Alone
Alone

2
2
3
1
2
2
2
2

by analyzing the serial interviews as case studies longitudinally, and then conducting repeated, cross-sectional analyses of both data
sets according to the stage of physical illness.35
Stages were defined according to how patients
perceived themselves along the physical trajectory at the time of the interview. We then developed the themes that were prevalent at various
points in the illness trajectories to see if typical
findings emerged at specific times. By displaying all four dimensions of need graphically,
we created an image to help us describe and
contrast common patterns of well-being and
distress experienced by people with advanced
lung cancer and heart failure along a timeline.
We did not attempt to measure levels of distress using a formal rating scale as these were
qualitative studies of patient perceptions.

Results
Taken together, these studies yielded 112 interviews with 48 patients with advanced lung
cancer (n 24, Table 1) and heart failure
(n 24, Table 2). The course of each dimension of need over time from diagnosis of the
advanced illness is illustrated first from the

Status at the End

of the Study
Alive
Alive
Died
Alive
Died
Alive
Alive
Hospital
Died
Died
Alive
Alive
Died
Withdrew
Withdrew
Withdrew
as moved away
Died
Alive
Alive
Withdrew
Died
Alive
Alive
Alive

lung cancer interviews (Fig. 1) and then from

the heart failure interviews (Fig. 2).

Lung Cancer Trajectory

Social Needs. For some, social lives started to
disintegrate, even when people were physically
able to participate in social events because of
other peoples fears about cancer. Loneliness
was common, and relationships with friends
could be uneasy due to the stigma of a cancer
diagnosis.
Theres old friends wont even take a cup of tea
with me now Ive got cancer. Mrs. LR
Social plans were frequently set aside as treatment became the focal point. Chemotherapyrelated side effects sometimes meant people
were unable to progress with important illness
work, such as sorting out family and practical issues and healing rifts in relationships. In retrospect, a number of patients regretted having
undergone active treatment, as quality time
with their families had been curtailed. As physical limitations increased, either from the illness
itself or from treatment side effects, there was
often a parallel decline in social well-being.
Many patients spoke of feeling increasingly

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Social, Psychological, and Spiritual Trajectories

397

Fig. 1. Lung cancer: physical, social, psychological, and spiritual well-being in the last year of life.

useless, dependent and sometimes excluded

from their usual family and social roles by wellmeaning relatives. Toward the terminal phase,
peoples social world tended to shrink down to
family and then just self. Most patients with
lung cancer wished to die at home, and nursing
services and benefits were generally available to
allow this to be a practical option.
Psychological Needs. Patients with advanced
lung cancer tended to experience uncertainty
and emotional distress at four key stages or
transitions: diagnosis, discharge after treatment, disease progression, and the terminal
stages (Fig. 1). These caused four troughs in
the graph of typical psychological well-being.
Initially, while waiting for test results and the
start of treatment, patients were highly anxious, emotionally distressed, and perceived
a lack of support. For those who heard at diagnosis that the cancer was both inoperable and
incurable, this was especially devastating.
Well, I got the results back that afternoon and he
said Im afraid its terminal. I got such a shock
e it was like as if he was talking about someone
else because other than that I was feeling fine.
We were absolutely gob-smacked. Mrs. LQ
Once treatment started, patients felt more
supported through contact with various staff,
and the atmosphere of hope that the activity
of treatment instigated.
The treatments have helped as well. great
nurses and departments, eh, specialists. Theyre

so caring. The oncology people, I mean, they get

to know their patients so well, you know. Mr. LK
After treatment, there was often, but not always a recurrence of psychological distress, especially if there was little contact with hospital
or primary care. Many patients struggled to
return to their old life, finding it hard to
cope with changes in body image and their
new identity as a cancer patient.
It was like a black hole. Ms. LP
At relapse, or when there was disease progression, patients were challenged again. For
some, engaging in a battle to defeat the cancer
appeared to give them a sense of purpose and
enabled them to cope. Others reflected on the
progressive losses experienced throughout
their illness.
I feel useless. When the quality has gone, life isnt
your own. Mrs. LU
In the terminal phase, some patients routinely contacted health services for reassurance, often describing physical symptoms to
legitimize the call. An overwhelming sense of
uncertainty, with frequent panic attacks,
prevented one patient from dying at home.
You dont know what is going to happen to you,
fear is the worst thing. Mrs. LI
Throughout the illness, people sometimes
struggled to maintain a normal life while
swinging from hope to despair. Patients gave
parallel accounts of trying to remain positive

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Murray et al.

Vol. 34 No. 4 October 2007

Fig. 2. Heart failure: physical, social, psychological, and spiritual well-being in the last year of life.

while also facing the real possibility of dying.

They found it hard to judge when to raise psychological or emotional issues with professionals and waited for cues, which were not
always forthcoming. Some people coped by
denial or disavowal, making open communication less appropriate.
Spiritual Needs. For patients with lung cancer,
spiritual distress and questioning tended to
occur at the same four points of transition as
psychological distress (Fig. 1).
At diagnosis, patients came face to face with
the prospect of suffering and death. They had
difficulties of explaining their emptiness and
searching:
Maybe this is God turning round and saying
Im going to get you back, because Ive not always
been a lily-white guy. Mr. LC
Returning home at the end of inpatient
treatment, many patients struggled to return
to their old life, and spoke of an altered sense
of self and a questioning of self-worth and
their value to others.
At disease progression, some people wondered what they had achieved in their lives
and what needed to be done before death.
Some patients, perceiving that they had no future, felt that their life in the present was
pointless. In the terminal phase, an acceptance
of death was sometimes apparent. Some worried if they had been good enough during
their life, if there was an afterlife, and feared
to die. Others felt confident in their faith,

knowing that death was a transition rather

than the end.
Ill say, God just let me die tonight, there must
be something thats better than this. Mr. LV
It oscillates terribly between a total and absolute
panic and an excitement to see what it is going
to be like. Mrs. LU

Heart Failure Trajectory

Social Needs. As physical decline gradually
progressed, with exacerbations sometimes
necessitating hospital admission for acute decompensation, there was a parallel shrinking
social world. Planning to go out was fraught
due to the fluctuations in the illness and having to find a toilet frequently due to the diuretic medication. The patients sense of
imprisonment was exacerbated by relatives
who unintentionally treated them as the invalid, confirming their loss of independence
and previous identity. Social support was less
available than for people with cancer, although
most preferred to be at home.
Psychological Needs. Psychological well-being
appeared to mirror the physical and social trajectories. Acute anxiety often accompanied
sudden physical exacerbations.
I slipped down the bed and oh, panic attacks I
got, and had to sit up. I couldnt get my breath.
You cant actually tell people. Mr. HQ

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Social, Psychological, and Spiritual Trajectories

Fluctuating but progressive physical debility

and increasing social isolation generally
caused frustration and low mood. However,
some patients did adopt a resilient, almost
stoical approach.
Its going to be what its going to be e the rest of
time Ive got left e I am just taking each day as it
comes. Mrs. HW
Spiritual Needs. Spiritual well-being in people
with heart failure gradually decreased, although sometimes varied throughout the trajectory. This reflected a progressive loss of
identity and growing dependence.36 Displacement within the family echoed a sense of displacement within a greater scheme of things,
and left patients questioning their value and
place in the world. As their illness incapacitated them, patients searched for meaning.
Patients who felt valued and affirmed by their
physician described being more able to come
to terms with their life and retain a sense of
worth and meaning. Illness and suffering was
sometimes associated with positive aspects,
such as love, hope, trust, forgiveness. While
some were supported and comforted by their
religious beliefs, others wondered about judgment or divine indifference.
Where is God in all this, has God forsaken me?
Mr. HU
As they sensed the imminence of death,
some heart failure patients, like those with
lung cancer, asked more explicit questions.
Is it real, is there life after death, where am I
going? What happens if I am wrong and there
is something after all? Mrs. HV

Discussion
We have described end-of-life trajectories of
social, psychological, and spiritual needs associated with lung cancer and heart failure. In
lung cancer, the physical and social trajectories
appeared interlinked, while people tended to
describe themselves as having more psychological and spiritual distress at four specific transitions. In advanced heart failure, social and
psychological decline ran in parallel with physical deterioration. Spiritual distress fluctuated

399

more and was modulated by various other

influences, including a perceived lack of understanding of these issues by health
professionals.
This analysis brought together the longitudinal data sets from two cohorts of palliative care
patients. The qualitative approach allowed an
in-depth understanding of the issues that
patients found most distressing. The serial interview approach enabled us to track and compare changes in perceived problems of
patients as they approach death, and compare
needs at various key times in the cancer and
heart failure trajectories. Separating spiritual
needs from psychological/emotional needs is
especially challenging, and the second study
allowed us to explore these dimensions in
more depth, yet still in the context of the wider
picture. A few patients were remarkably resilient and retained a sense of well-being, psychologically and spiritually, in the face of death.

Limitations of the Typical Trajectory

Approach and the Study Methods
Although a range of patients with lung cancer and heart failure were represented in the
studies, all came from southeast Scotland.
The extent to which these findings are applicable to different national, social, ethnic, and
religious groups is unknown. The different
components of distress are sometimes inextricably linked and difficult to disentangle. Distress in one dimension may increase the
distress perceived in another. People may react
in different ways to illness, and many external
factors can impinge on any typical patterns.
For instance, simply attending an oncology
outpatient clinic can be associated with rises
in anxiety, depression, pain, and fatigue.37 Individual patients will die at different stages
along each trajectory, and rates of progression
vary. Comorbidity and social circumstances
may intervene, and priorities and needs
change.

Clinical Implications
Care Planning Must Be Four-Dimensional. Optimizing quality of life with a view to achieving
a timely, dignified, and peaceful death is the
primary endeavor of palliative care. Understanding and considering typical trajectories
of need may help professionals anticipate

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Murray et al.

when, and in which dimension, an individual

patient is likely to be distressed so that they
are in a better position to plan care proactively.
This approach may help operationalize Chochinov et al.s concept of dignity-preserving
end-of-life care by encouraging consideration
of symptom control, social support, and existential comfort as an integrated package.38
Furthermore, some patients attempt to gain
control over their illness by acquiring knowledge about how it is likely to progress. Explanation about when practical, emotional, and
existential issues might be expected to occur,
and the services available, could empower
them and their carers.
Clinicians should adopt their own simple
but comprehensive assessment tool for all
their patients who might die soon.25 We are
not suggesting that health professionals
should take the responsibility for dealing
with all dimensions of need, but that they
should be able to recognize unmet needs
that are causing significant distress, and refer
to other social and spiritual care providers if
the patient wishes. A holistic approach, considering each dimension of need, may moderate
the current technological imperative, with
care focused on physical interventions to preserve or prolong life. A realistic dialogue acknowledging the different trajectories and
dimensions of needs with the patient, family,
and professionals can allow the option of supportive care, focusing on quality of life and
symptom control, to be adopted earlier and
more frequently.5
Raising Social Issues May Help More People Die
Where They Wish. In the economically developed world, dying at home is the express
wish of around 65% of people at the beginning
of both cancer and organ failure trajectories,
although few achieve this.39,40 In the United
States and the UK, only around 20% die at
home,24,41 whereas in Eire, 60% do so. Eliciting social factors including the preferred
place of care, now routine in the UK Gold
Standards Framework,42,43 greatly helps advance planning, which is central to effective
care.44 Primary care teams report more people
dying in their preferred place when these
social aspects are broached. The Liverpool
End of Life Pathway promotes the proactive
identification of multidimensional needs in

Vol. 34 No. 4 October 2007

the last days of life.45 Dealing with social and

practical issues is likely to decrease the many
emergency admissions due to carer distress.42
Multidimensional Trajectories Give the Forgotten
Spiritual Dimension Due Emphasis. Considering
these different trajectories brings spiritual assessment and care into focus, and highlights
that many patients have spiritual issues from
the diagnosis of a life-threatening cancer or
chronic condition, not just at the very end of
life. Previous work46 has identified that for
patients with lung cancer and their carers, spiritual distress and questioning tend to occur at
three points of transition: diagnosis, at the
time of recurrence, and during the terminal
stage, but we add a fourth time: at the end of
treatment. A patient-centered approach, supporting people in their own worldview, and
providing openings for expression of fear,
doubt, and anxiety may help patients in their
search for meaning and prevent spiritual concerns amounting to disabling distress. This
multidimensional approach is ideally suited
to all patients with serious medical conditions;
it should not be confined to only those actively
dying.47

Conclusions
The key to caring well for those who will die
in the relatively near future is to understand
what matters to them and how they may die,
and then plan appropriately to minimize and
manage their distress. Since diseases affect individuals in different ways, generalizations are
fraught. Nonetheless, it appears that patients
with lung cancer and heart failure may have
common patterns of physical, social, psychological, and spiritual needs as the illness progresses. Typical trajectories may exist for other
common diseases. Being aware of these trajectories may help clinicians anticipate times of
increased social, psychological, and existential
distress, and think proactively about ways of
preventing or minimizing distress in their
quest to help patients achieve a death with dignity. Different models of care may be indicated
for malignant and nonmalignant illnesses.
More research is now needed to increase our
understanding of how the insights offered by
these trajectories can be translated into

Vol. 34 No. 4 October 2007

Social, Psychological, and Spiritual Trajectories

401

improvements in services for patients and their

families.

13. Mount BM, Flanders EM. Existential suffering

and the determinants of healing. Eur J Palliat
Care 2003;10(2 Suppl):40e42.

Acknowledgments

14. Steinhauser KE, Voils CI, Clipp C, et al. Are

you at peace? One item to probe spiritual concerns
at the end of life. Arch Intern Med 2006;166:
101e105.

The authors would like to thank Dr. David

Chinn for commenting on drafts of this article,
the patients and carers for their time, and the
Chief Scientist Office of the Scottish Executive
and Macmillan Cancer Support for funding.

15. Hay D, Hunt K. Understanding the spirituality

of people who dont go to church: A report on
the findings of the Adults Spirituality Project at
the University of Nottingham. Nottingham, UK:
University of Nottingham, 2000.

References

16. Koenig HG. Religious beliefs and practices of

hospitalized medically ill older adults. Int J Geriatr
Psychiatry 1998;13:213e224.

1. Lunney JR, Lynn J, Foley DS, Lipson S,

Guralnik JM. Patterns of functional decline at the
end of life. JAMA 2003;289:2387e2392.

17. McIllmurray MB, Francis B, Harman JC, et al.

Psychosocial needs in cancer patients related to
religious belief. Palliat Med 2003;17:49e54.

2. Lehman R. How long can I go on like this?

Dying from cardiorespiratory disease. Br J Gen Pract
2004;54:892e893.

18. Higginson IJ, Costantini M. Communication in

end-of-life cancer care: a comparison of team assessments in three European countries. J Clin Oncol
2002;20:3674e3682.

3. Murtagh FEM, Preston M, Higginson I. Patterns

of dying: palliative care for non-malignant disease.
Clin Med 2004;4:39e44.
4. Davies E, Higginson IJ, eds. Palliative care: The
solid facts. Copenhagen: World Health Organization Regional Office for Europe, 2004.
5. Murray SA, Kendall M, Boyd K, Sheikh A. Illness
trajectories and palliative care. BMJ 2005;330:
1007e1011.
6. McClain CS, Rosenfeld B. Effect of spiritual
well-being on end-of-life in terminally-ill cancer
patients. Lancet 2003;361:1603e1607.
7. Cassell E. The nature of suffering. New York:
Oxford University Press, 1991.
8. Saunders C. Into the valley of the shadow of
death: a personal therapeutic journey. BMJ 1996;
313:1599e1601.
9. Clausen H, Kendall M, Murray SA, et al. Would
palliative care patients benefit from social workers
retaining the traditional casework role rather
than working as care managers? A prospective serial
qualitative interview study. Br J Soc Work 2005;35:
277e285.
10. Sheldon F. Social impact of advanced metastatic
cancer. In: Lloyd-Williams M, ed. Psychosocial issues
in palliative care. Oxford: Oxford University Press,
2003: 35e48.
11. Lloyd-Williams M, Dennis M, Taylor F. A prospective study to determine the association between
physical symptoms and depression in patients with
advanced cancer. Palliat Med 2004;18:558e563.
12. Hotopf M, Chidget J, Addington-Hall J, Lan L.
Depression in advanced disease: a systematic review.
Part1. Prevalence and case finding. Palliat Med
2002;16:81e97.

19. Chibnall JT, Videen SD, Duckro PN, Miller DK.

Psychosocial-spiritual correlates of death distress in
patients with life-threatening medical conditions.
Palliat Med 2002;16:331e338.
20. McClain CS, Rosenfeld B, Breitbart W. Effect of
spiritual well-being on end-of-life despair in terminallyill cancer patients. Lancet 1993;361:1603e1607.
21. Cohen SR, Mount BM, Thomas J, Mount L.
Existential well-being is an important determinant
of quality of life: evidence from the McGill Quality
of Life Questionnaire. Cancer 1996;77:576e586.
22. Cohen SR, Boston P, Mount BM, Porterfield P.
Changes in quality of life following admission to
palliative care units. Palliat Med 2001;15:363e371.
23. Puchalski CM, Kilpatrick SD, McCullough ME,
Larson D. A systematic review of spiritual and
religious variables in Palliative Medicine, American
Journal of Hospice and Palliative Care, Hospice
Journal, Journal of Palliative Care and Journal of
Pain and Symptom Management. Palliat Support
Care 2003;1:7e13.
24. Institute of Medicine. Approaching death. Improving care at the end of life. Washington, DC:
National Academy Press, 1997.
25. Emanuel EJ, Emanuel LL. The promise of
a good death. Lancet 1998;351(Suppl II):21e29.
26. McManus C. Engel, Engels, and the side of the
angels. Lancet 2005;365:2169e2170.
27. Malterud K. The art and science of clinical
knowledge: evidence beyond measures and
numbers. Lancet 2001;358:397e400.
28. Giacomini MK, Cook DJ, for the Evidence-Based Medicine Working Group. Users guides to
the medical literature: XXIII. Qualitative research
in health care B. What are the results and how do

402

Murray et al.

they help me care for my patients? JAMA 2000;284:

478e482.
29. Entwistle V, Tritter J, Calnan M. Researching
experiences of cancer: the importance of methodology. Eur J Cancer Care 2002;11:232e237.
30. Smith LK, Pope C, Botha JL. Patients helpseeking experiences and delay in cancer presentation: a qualitative synthesis. Lancet 2005;366:
825e831.
31. Murray SA, Boyd K, Kendall M, Worth A,
Benton TF. Dying of lung cancer or cardiac failure:
prospective qualitative interview study of patients
and their carers in the community. BMJ 2002;325:
929e932.
32. Grant E, Murray SA, Kendall M, et al. Spiritual
issues and needs: perspectives from patients with
advanced cancer and non-malignant disease. Palliat
Support Care 2004;2:371e378.
33. World Health Organization. Handbook for
representing results of cancer treatment. Geneva:
World Health Organization, 1979.
34. Coffey A, Atkinson P. Making sense of qualitative data: Complementary research strategies.
Thousand Oaks, CA: Sage, 1996.
35. Holland J, Thomson R, Henderson S. Feasibility
study for a possible longitudinal study: discussion
paper. Economic and Social Research Council.
Available from http://www.esrcsocietytoday.ac.uk/
ESRCInfoCentre/Images/QLS_Feasibility_Study_
tcm6-8013.pdf 2004; Accessed May 25, 2006.
36. Murray SA, Kendall M, Boyd K, Worth A,
Benton TF. Exploring the spiritual needs of people
dying of lung cancer or heart failure: a prospective
qualitative interview study of patients and their
carers. Palliat Med 2004;18:39e45.

Vol. 34 No. 4 October 2007

37. Barclay SIG. General practitioner provision of

palliative care. Cambridge, UK: University of Cambridge, 2005.
38. Chochinov HM, Hack T, Hassard T, et al. Dignity therapy: a novel psychotherapeutic intervention
for patients near the end of life. J Clin Oncol 2005;
23:5520e5525.
39. Higginson I, Sen-Gupta GJA. Place of care in
advanced cancer. J Palliat Med 2004;3:287e300.
40. Gomes B, Higginson IJ. Factors influencing
death at home in terminally ill patients with cancer:
systematic review. BMJ 2006;332:515e518.
41. Emanuel LL, von Gunten CF, Ferris FD. Gaps in
end-of-life care. Arch Fam Med 2000;9:1176e1180.
42. Thomas K. The Gold Standards Framework in
community palliative care. Eur J Palliat Care 2003;
10:113e115.
43. The Gold Standards Framework. A programme
for community palliative care. Available from
http://www.goldstandardsframework.nhs.uk.
Accessed November 25, 2006.
44. Education in palliative and end-of-life care
(EPEC). Available from http://www.epec.net. Accessed May 25, 2006.
45. NHS Modernisation Agency. Liverpool care
pathway. Promoting best practice for care of the
dying. Liverpool: Marie Curie Cancer Care, 2000.
46. The A-M, Hak T, Koeter G, van der Wal G. Collusion in doctor-patient communication about imminent death: an ethnographic study. BMJ 2000;
321:1376e1381.
47. Morrison RS, Meier DE. Palliative care. N Engl J
Med 2004;350:2582e2590.