BMJ 2017;356:j878 doi: 10.1136/bmj.

j878 (Published 2017 February 27) Page 1 of 5

Analysis

ANALYSIS

Palliative care from diagnosis to death

Evidence is growing that people can benefit from palliative care earlier in their illness, say Scott
Murray and colleagues, but care must be tailored to different conditions

1 1
Scott A Murray professor , M Kendall social scientist , G Mitchell professor of general practice and
2 3 4
palliative care , S Moine general practitioner , J Amblàs-Novellas geriatrician , K Boyd honorary
1
senior clinical lecturer
1
Primary Palliative Care Research Group, Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, UK;
2
Faculty of Medicine and Biomedical Science, University of Queensland, Brisbane, Australia; 3Health Education and Practices Laboratory, Amiens
University Hospital, Amiens, France; 4Geriatric and Palliative Care Department, University of Vic, Barcelona, Spain

Many people still associate palliative care with care in the quality of life of people with cancer and other advanced life
terminal stage of cancer, and patients with cancer remain more limiting conditions.6-8 It can also help avoid burdensome
likely to receive it than those with other illnesses.1 It is often interventions of low benefit.9 Studies of older people in Australia
delayed until the last weeks or days of life once the illness is and people with chronic disease in Canada showed significant
advanced and disease focused treatments are no longer effective. reductions in hospital admissions.10-12
However, late palliative care is a missed opportunity to do better Patients have been shown to have palliative care needs from
for patients, families, and health services. In high income diagnosis.13 Although trials do not explain which aspects of
countries, up to 80% of people who die could benefit from palliative care are the most important, helping people to make
palliative care much earlier in their illness.2 choices aligned with their priorities seems to be the key.14
The World Health Organization adopted a resolution on early Below we set out a rationale for early palliative care based on
palliative care in 2014. It states that palliative care should be the three typical trajectories of functional decline towards the
considered from diagnosis onwards and integrated into care for end of life (rapid, intermittent, and gradual)15 16 and suggest how
people with any condition that means they may die in the it can be incorporated into disease specific care.
foreseeable future.3 Palliative care can improve the quality of
life of patients and their families through timely identification
of deteriorating health, holistic assessment of needs,
Rapid functional decline
management of pain and other problems (physical, psychosocial, In people with advanced cancer, social functioning typically
and spiritual), and person centred planning of care. declines in parallel with physical decline, whereas psychological
By embracing the principles of palliative care in their routine and spiritual wellbeing often fall together at four key times:
practice, clinicians can meet the multidimensional needs of around diagnosis, at discharge after initial treatment, as the
people with deteriorating health more effectively. Palliative care illness progresses, and in the terminal phase (fig 1⇓). Patients
specialists can provide support, training, additional advice, and and family members report that the time around diagnosis is
direct involvement in more complicated or unstable situations.4 one of the most traumatic, psychologically and existentially,
with further emotional turmoil as the patient gets more ill.17
What is the evidence for early palliative
All people whose cancer may be life limiting, but not necessarily
care? untreatable, should be considered for palliative care from
Randomised controlled trials and other studies show multiple diagnosis. They can benefit from holistic care and support as
benefits from early palliative care. A landmark randomised trial well as planning care even when they may be relatively well
comparing standard care with outpatient specialist palliative physically. Patients report finding it supportive for professionals
care integrated with oncology for patients with advanced or to simply acknowledge that this initial time can be very
metastatic disease improved quality of life and, for some people, challenging. Some also value being told about the likely course
longevity.5 Further recent trials and a systematic review report of events for people with their condition. Waiting for physical
that early systematic provision of palliative care by many decline misses the opportunity to provide well coordinated
clinicians, not just by palliative care specialists, can improve palliative care integrated with other treatments. Triggers for a

Correspondence to: S A Murray [email protected]

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BMJ 2017;356:j878 doi: 10.1136/bmj.j878 (Published 2017 February 27) Page 2 of 5

ANALYSIS

review of palliative care needs include discharge from hospital annual medical examinations in older people. Various
after treatment, poorly controlled symptoms, falling identification tools—such as the Supportive and Palliative Care
performance, and other clinical evidence of disease progression Indicator Tool, Necesidades Paliativas, and Gold Standards
Framework guide—are available and increasingly popular
Intermittent decline internationally.22 23 Action before the last weeks or days of life
means accepting prognostic uncertainty instead of relying on
In people with life limiting, long term conditions or multiple mortality prediction tools that do not work for individuals.1 24
illnesses, the dynamic “four dimensional” pattern of needs is
different from that for most progressive cancers. Social and Good conversations
psychological decline both tend to track the physical decline,
while spiritual distress fluctuates more and is modulated by Early conversations suggesting that it is helpful to start talking
other influences, including the person’s capacity to remain about what might happen in the future and available treatment
resilient (fig 2⇓).16 People may die suddenly during an and care options should be introduced sensitively.14 Explaining
exacerbation or when still functioning relatively well, so death the inherent uncertainties of life limiting illness is different from
is often perceived as unexpected, although it has actually been breaking bad news. It requires an ongoing discussion about what
a predictable risk for some years.18 might happen and what could help.25 There are many well
validated guides to help clinicians to explore people’s
During the increasingly frequent exacerbations of conditions understanding, share individualised information, respond to
such as heart failure, liver failure, or chronic obstructive emotions, and acknowledge loss so that care is tailored to each
pulmonary disease, patients and their carers are anxious, need person’s needs and priorities. The content and the context of
information, and often have social problems. Support for these such conversations should be relevant to the person’s current
needs might be more effective and likely to reduce hospital state and involve those close to them (box 1).14-28
admissions than interventions focusing on disease management
or physical wellbeing, especially as multimorbidity is the norm Many clinicians find it challenging to raise palliative care with
in these conditions. Planning for exacerbations should include patients because it is associated with imminent death. In Canada
dealing with multidimensional needs and communicating current and the UK some palliative medicine physicians use the term
plans and patient wishes regularly and routinely to out-of-hours “supportive care” to promote access.29 In one study many
care providers and hospitals. This facilitates appropriate patients who experienced early palliative care thought it should
management during and after such crises.19 be renamed.30 Practical aspects of doing this have recently been
reviewed.31 A natural experiment of using the term “anticipatory
care” throughout Scotland found that it enabled earlier
Gradual decline conversations. Planning for possible deterioration made it much
People who have frailty, dementia, or a progressive neurological easier to discuss and plan for likely events in the illness
disease, including those with long term disability after a severe trajectory, including dying. More patients subsequently received
stroke, typically experience a gradual physical decline from a this planned holistic care before dying.19
limited baseline and a diminishing social world. 20 Psychological
and existential wellbeing sometimes fall in response to changes Integration with ongoing disease management
in social circumstances or an acute physical illness but a Integration is the only way that early palliative care can be
decrease in social, psychological, or existential wellbeing can widely available and acceptable to most people. Open dialogue
herald global physical decline or death (fig 3⇓). Some older and planning should occur in the community, care homes, and
people reach a tipping point when they feel unable to live hospital wards, so that everyone who needs it can benefit.32
usefully or with dignity and experience increasing psychological Communication between settings is vital. Hospital specialists,
and existential distress before dying.21 specialists in palliative care, general practitioners, community
Actions to promote optimum physical health should be combined nurses, patients and carers, and providers and commissioners
with help to engage with social support and care that let frail of care must all be included.
older people maintain a sense of self and purpose even in the Several such initiatives have already been implemented in health
face of increasing dependence. Allowing older people to raise systems throughout Europe.33 A WHO web platform dedicated
and discuss their greatest fears—of losing independence, to integrated people centred palliative care (www.
dementia, or being a burden to others—is person centred early integratedcare4people.org/communities/integrated-people-
palliative care. Anticipating and planning for deteriorating health centred-palliative-care/) has been launched to share good
in older age can reduce distress while promoting a realistic practice, experiences, and lessons.
understanding of normal ageing and how death occurs at the
By considering each dimension of need, palliative care may
end of a long life. People with early dementia or progressive
promote kinder and more realistic medicine, preventing
neurological conditions need holistic palliative care and support
unnecessary treatment.9 An open conversation mapping out the
to plan ahead from the time of diagnosis.
likely course of the illness and future needs with the patient and
family can allow an earlier focus of care on quality of life and
Early palliative care for all conditions managing symptoms. Initiatives to promote a public discourse
Lack of timely identification of people who may benefit is the about death and dying are underway in Scotland (www.
greatest barrier to early palliative care. In the same way that we goodlifedeathgrief.org.uk), England (www.dyingmatters.org),
screen for cardiovascular risk factors or for diabetes, we should and Ireland (http://hospicefoundation.ie/programmes/public-
routinely and systematically consider whether our patients might awareness). These include telling people how early palliative
benefit from early palliative care. Signs of decline in general care can help them live well from diagnosis onwards.
health or specific conditions can be combined with triggers such Early palliative care requires doctors to be alert to the
as unplanned admissions, poorly controlled symptoms, or opportunity to introduce it, to listen to what the person thinks
increasing need for carer support. Screening can happen at is important, and to offer ongoing support. Understanding typical
treatment reviews, at hospital admission or discharge, or at patterns of decline and distress enables professionals, patients,
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BMJ 2017;356:j878 doi: 10.1136/bmj.j878 (Published 2017 February 27) Page 3 of 5

ANALYSIS

Box 1: Introducing early palliative care

• Talk about why starting a conversation about what is happening is important:
When someone has this sort of health problem, we usually plan to have a talk together about what is happening and what help they
might like to have now or in the future…
The treatment has helped this time and I am glad you feel better, but I am worried you may get unwell again so can we talk about
how we might plan for that…?
• Ask who should be involved:
What would be the best way for us to talk about this? People often like us to involve a family member or close friend…
• Talk about the main aims of the conversation:
We want to find out about the things that are important for you like what you’d like to be able to do now and in the future…
We can talk about your current situation and what you want to know about your health problems…How have you been doing recently?
This is a good time for us to talk about any thoughts or worries you might have about the future…
• Ask what the person knows, has been told, and thinks could happen to them
• Talk about what might happen linked to this understanding and awareness using short “chunks” with pauses and time for questions
or reactions
• Ask what matters most so that good plans can be made to help
• Talk about getting advice from a colleague who can help you look after them well if the situation is more complicated or unstable.
Explain that palliative care is all about what we can do to help people stay as well as possible

and their carers to share a realistic view and include palliative 9 Scottish Government. Realistic medicine. 2014.
http://www.gov.scot/Resource/0049/00492520.pdf
care to prevent as well as treat distress. Explanation about when 10 Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning
practical, emotional, and existential issues might occur, and the on end of life care in elderly patients: randomised controlled trial. BMJ 2010;356:c1345.
doi:10.1136/bmj.c1345 pmid:20332506.
help available, helps empower patients and provides real hope. 11 Rocker G, Downar J, Morrison RS. Palliative care for chronic illness: driving change.
Early palliative care is therefore about doing more for the CMAJ 2016;356:E493-8. doi:10.1503/cmaj.151454 pmid:27551031.
12 Mitchell G, Zhang J, Burridge L, et al. Case conferences between general practitioners
person, not less. Indeed it might be best not to call it palliative and specialist teams to plan end of life care of people with end stage heart failure and
care, but just good patient centred care and planning, to which lung disease: an exploratory pilot study. BMC Palliat Care 2014;356:24. doi:10.1186/1472-
684X-13-24 pmid:24829539.
we should all aspire. 13 Beernaert K, Pardon K, Van den Block L, et al. Palliative care needs at different phases
in the illness trajectory: a survey study in patients with cancer. Eur J Cancer Care (Engl)
We thank Richard Lehman for providing comments on this article and 2016;356:534-43. doi:10.1111/ecc.12522 pmid:27271354.
14 Jackson VA, Jacobsen J, Greer JA, Pirl WF, Temel JS, Back AL. The cultivation of
Heather Goodare for her suggestions from a patient and carer prognostic awareness through the provision of early palliative care in the ambulatory
perspective. setting: a communication guide. J Palliat Med 2013;356:894-900. doi:10.1089/jpm.2012.
0547 pmid:23786425.
Contributors and sources: The authors comprise a social scientist, 15 Murray SA, Sheikh A. Palliative care beyond cancer: care for all at the end of life. BMJ
2008;356:958-9. doi:10.1136/bmj.39535.491238.94 pmid:18397942.
general practitioners from three countries, a geriatrician, and a palliative
16 Kendall M, Carduff E, Lloyd A, et al. Different experiences and goals in different advanced
medicine specialist. We have drawn on a synthesis of 12 studies and diseases: comparing serial interviews with patients with cancer, organ failure, or frailty
over 1200 in-depth serial interviews with people who had diverse, life and their family and professional carers. J Pain Symptom Manage 2015;356:216-24. doi:
10.1016/j.jpainsymman.2015.02.017 pmid:25828558.
limiting conditions and their carers from studies carried out in the past 17 Cavers D, Hacking B, Erridge SE, Kendall M, Morris PG, Murray SA. Social, psychological
15 years by the Primary Palliative Care Research Group in Edinburgh. and existential well-being in patients with glioma and their caregivers: a qualitative study.
CMAJ 2012;356:E373-82. doi:10.1503/cmaj.111622 pmid:22431898.
We have also reviewed broader patient experience research 18 Mason B, Nanton V, Epiphaniou E, et al. “My body’s falling apart.” Understanding the
internationally, and interventions in many countries to provide early experiences of patients with advanced multimorbidity to improve care: serial interviews
with patients and carers.BMJ Support Palliat Care 2016;356:60-5doi:10.1136/bmjspcare-
palliative or supportive care throughout Europe, Australia, and America
2013-000639. pmid:25023218.
to inform this analysis. 19 Tapsfield J, Hall C, Lunan C, et al. Many people in Scotland now benefit from anticipatory
care before they die: an after death analysis and interviews with general practitioners.
Competing interests: We have read and understood BMJ policy on BMJ Support Palliat Care 2016;356:1-10. pmid:27075983.
declaration of interests and have no relevant interests to declare. 20 Amblàs-Novellas J, Murray SA, Espaulella J, et al. Identifying patients with advanced
chronic conditions for a progressive palliative care approach: a cross-sectional study of
Provenance and peer review: Not commissioned; externally peer prognostic indicators related to end-of-life trajectories. BMJ Open 2016;356:e012340.
reviewed. doi:10.1136/bmjopen-2016-012340 pmid:27645556.
21 Lloyd A, Kendall M, Starr JM, Murray SA. Physical, social, psychological and existential
trajectories of loss and adaptation towards the end of life for older people living with frailty:
1 British Medical Association. End-of-life care and physician-assisted dying. Vol 3. Reflections a serial interview study. BMC Geriatr 2016;356:176. doi:10.1186/s12877-016-0350-y pmid:
and recommendations. 2016. http://www.bma.org.uk/working-for-change/improving-and- 27765011.
protecting-health/end-of-life-care#recommendations 22 Maas EAT, Murray SA, Engels Y, Campbell C. What tools are available to identify patients
2 Murtagh FE, Bausewein C, Verne J, Groeneveld EI, Kaloki YE, Higginson IJ. How many with palliative care needs in primary care: a systematic literature review and survey of
people need palliative care? A study developing and comparing methods for European practice. BMJ Support Palliat Care 2013;356:444-51. doi:10.1136/bmjspcare-
population-based estimates. Palliat Med 2014;356:49-58. doi:10.1177/ 2013-000527 pmid:24950525.
0269216313489367 pmid:23695827. 23 Walsh RI, Mitchell G, Francis L, van Driel ML. What diagnostic tools exist for the early
3 World Health Assembly. Strengthening of palliative care as a component of integrated identification of palliative care patients in general practice? A systematic review. J Palliat
treatment within the continuum of care. 134th session of the World Health Assembly. Care 2015;356:118-23. pmid:26201214.
EB134.R7 May 2014. http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_31-en.pdf 24 Bacon J. The palliative approach: improving care for Canadians with life-limiting illnesses
4 Masso M, Allingham SF, Banfield M, et al. Palliative care phase: inter-rater reliability and Canadian Hospice Palliative Care Association, 2012. http://hpcintegration.ca/media/38753/
acceptability in a national study. Palliat Med 2015;356:22-30. doi:10.1177/ TWF-palliative-approach-report-English-final2.pdf
0269216314551814 pmid:25249239. 25 Kimbell B, Murray SA, Macpherson S, Boyd K. Embracing inherent uncertainty in advanced
5 Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic illness. BMJ 2016;356:i3802. doi:10.1136/bmj.i3802 pmid:27430629.
non-small-cell lung cancer. N Engl J Med 2010;356:733-42. doi:10.1056/ 26 Parry R, Land V, Seymour J. How to communicate with patients about future illness
NEJMoa1000678 pmid:20818875. progression and end of life: a systematic review. BMJ Support Palliat Care
6 Higginson IJ, Bausewein C, Reilly CC, et al. An integrated palliative and respiratory care 2014;356:331-41. doi:10.1136/bmjspcare-2014-000649 pmid:25344494.
service for patients with advanced disease and refractory breathlessness: a randomised 27 Smith AK, White DB, Arnold RM. Uncertainty—the other side of prognosis. N Engl J Med
controlled trial. Lancet Respir Med 2014;356:979-87. doi:10.1016/S2213-2600(14)70226- 2013;356:2448-50. doi:10.1056/NEJMp1303295 pmid:23802514.
7 pmid:25465642. 28 Back AL, Arnold RM, Baile WF, Tulsky JA, Fryer-Edwards K. Approaching difficult
7 Temel JS, Greer JA, El-Jawahri A, et al. Effects of early integrated palliative care in communication tasks in oncology. CA Cancer J Clin 2005;356:164-77. doi:10.3322/canjclin.
patients with lung and GI cancer: a randomized clinical trial. J Clin Oncol 55.3.164 pmid:15890639.
2016;356:JCO2016705046. pmid:28029308. 29 Caprio AJ. Palliative care: renaming as supportive care and integration into comprehensive
8 Tassinari D, Drudi F, Monterubbianesi MC, et al. Early palliative care in advanced oncologic cancer care. CMAJ 2016;356:711-2. doi:10.1503/cmaj.160206 pmid:27091796.
and non-oncologic chronic diseases: a systematic review of literature. Rev Recent Clin
Trials 2016;356:63-71. doi:10.2174/1574887110666151014141650 pmid:26464077.

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BMJ 2017;356:j878 doi: 10.1136/bmj.j878 (Published 2017 February 27) Page 4 of 5

ANALYSIS

Key messages
Palliative care should start at diagnosis and not be confined to the very end of life
Early palliative care improves quality of life by focusing on living well with deteriorating health
All health professionals need to incorporate holistic palliative care into their practice
An understanding of typical, multidimensional illness trajectories can help doctors know what to offer and when

30 Zimmermann C, Swami N, Krzyzanowska M, et al. Perceptions of palliative care among 33 Gómez-Batiste X, Murray SA, Thomas K, et al. Comprehensive and integrated palliative
patients with advanced cancer and their caregivers. CMAJ 2016;356:E217-27. doi:10. care for people with advanced chronic conditions: an update from several European
1503/cmaj.151171 pmid:27091801. initiatives and recommendations for policy. J Pain Symptom Manage
31 Hui D, Bruera E. Integrating palliative care into the trajectory of cancer care. Nat Rev Clin 2016;S0885-3924(16)31203-9. pmid:28042069.
Oncol 2016;356:159-71. doi:10.1038/nrclinonc.2015.201 pmid:26598947.
Published by the BMJ Publishing Group Limited. For permission to use (where not already
32 Gamondi C, Larkin PJ, Payne S. Core competencies in palliative care: an EAPC White
Paper on palliative care education— part 1. Eur J Palliat Care 2013;356:86-91. granted under a licence) please go to http://group.bmj.com/group/rights-licensing/
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BMJ 2017;356:j878 doi: 10.1136/bmj.j878 (Published 2017 February 27) Page 5 of 5

ANALYSIS

Figures

Fig 1 Wellbeing trajectories in patients with conditions such as cancer causing rapid functional decline

Fig 2 Wellbeing trajectories in patients with intermittent decline (typically organ failure or multimorbidity)

Fig 3 Wellbeing trajectories in patients with gradual decline (typically frailty or cognitive decline)

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