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End of life care still not living up to public and doctors’ expectations

We need a renewed and shared vision and purpose

18 April 2016 // Scott A Murray St Columba’s Hospice chair of primary palliative care

End of life care still not living up to public and doctors’
expectations
We need a renewed and shared vision and purpose
Scott A Murray St Columba’s Hospice chair of primary palliative care1, Iain R Murray clinical lecturer2
1Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, EH8 9AG; 2Department of Trauma and
Orthopaedics, University of Edinburgh
To allow people the deaths they want, end of life care
must be radically transformed11
As a society and as a medical profession we are apparently
failing most people who die. Another report again calls for UK
governments to prioritise and improve end of life care,
particularly for those with non-cancer related illnesses.1 This
latest detailed BMA report rates specialist palliative care for
people with cancer as “excellent,” while stating that palliative
care for other conditions can be “poor” and “could frequently
do much better.” High quality care is not being delivered
consistently.
There are many examples of good progress, but poor
communication, poor coordination, under-resourced services
in the community, and limited public involvement persist and
are cited as reasons for these ongoing failures. Furthermore, the
report highlights that overtreatment is increasingly not only
harming dying people but also precluding the addition of a
palliative care approach with good, realistic, and proportionate
care.2
Why has progress been slow in end of life care when many
innovations in acute care have been rapidly adopted?3 Key
stakeholders must band around a shared vision and take
corporate responsibility to provide antemortem care that is as
reliably good as antenatal care and to stimulate effective public
information and involvement campaigns.
The BMA’s report identifies many key actions. These include
recognising better when patients may be dying, particularly frail
elderly patients with multiple comorbidities; gaining
communication skills to manage the inherent uncertainties of
life threatening illnesses rather than succumb to “prognostic
paralysis”4; and the urgent need for electronic systems to
coordinate care or patient passports to promote safe care and
minimise inappropriate admissions. The report echoes
Gawande’s recent criticism of the lack of investment and
confidence in care homes,5 where more people are now dying.
Proactive palliative care delivered by generalists or specialists
is not routinely offered or requested as an alternative to
aggressive disease modifying treatment, even when only
marginal net benefit is expected.
Why such slow progress in mainstreaming palliative care? The
reasons are many. There is chronic underinvestment in teaching
and training.6 The average undergraduate medical training in
palliative care is about 20 hours, and it may be taught as a
specialty rather than a universal approach for the dying. Junior
doctors feel underprepared for dealing with dying patients.7
Palliative care research in the UK receives about 0.7% of cancer
research funding, thus its evidence base remains
underdeveloped. Cancer centres, with a few notable exceptions,
want to be cure centres and to research curative therapies.
Rebranding palliative care might help
The government has prioritised less important activities in
primary care and left staff with little time for difficult
conversations or emotional support. Most patients therefore die
before they are identified for a palliative care approach. Much
recent public discussion around assisted dying and the National
Institute for Health and Care Excellence guidelines8 have
reinforced public and medical opinion that palliative care is
only for the last weeks or days. When a Scottish-wide
intervention was trialled to start “anticipatory care” (avoiding
the word palliative) coverage rapidly increased from 25% to
53% of patients with non-malignant illnesses.9 Rebranding may
be helpful.
Key stakeholders—including public health, disease specific,
geriatric, primary care, palliative medicine, and health promotion
specialists—must band around a shared vision and purpose and
take corporate responsibility for dealing with dying as a public
health priority as well as a clinical priority. All stakeholders
can promote public engagement, which is currently being
creatively taken forward in Scotland (www.goodlifedeathgrief.
org.uk), England (www.dyingmatters.org), and Ireland
(http://hospicefoundation.ie/programmes/public-awareness).
As clinicians we can promote resilience in our patients and help
communities to play a substantial role in supporting individuals
at the end of life and through bereavement.10 In the past decade,
Correspondence to: S A Murray Scott.Murray@ed.ac.uk
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BMJ 2016;353:i2188 doi: 10.1136/bmj.i2188 (Published 18 April 2016) Page 1 of 2
Editorials
EDITORIALS
spending on non-cancer palliative care has doubled to around
25% of the total spent on palliative care, but the target must be
at least 70% to reflect need rather than diagnosis. And this does
not factor in that patients with non-cancer disease typically have
a longer period of need. For such changes, we need not only
quality improvement initiatives but also innovations within
hospices (such as special clinics for patients with non-malignant
disease) and in the community to meet and even define needs
in radically new ways.
Hospices started as “disruptive innovators,” challenging the
medicalisation of death.11 We must continue to innovate. Could
each palliative care specialist spend half their time training and
supporting generalists? Could geriatricians or hospice staff
formally support groups of care homes so that skills, values,
and resources migrate? Could we together create teaching and
research based care homes to do for care homes what the modern
hospice movement did for dying 50 years ago? We cannot
prevent dying, but we can minimise much avoidable distress
and lessen the persisting postcode and diagnostic iniquities.12
Competing interests: We have read and understood BMJ policy on
declaration of interests and have no relevant interests to declare.
Provenance and peer review: Commissioned; not externally peer
reviewed.
1 British Medical Association. End-of-life care and physician-assisted dying. Vol 3. Reflections
and recommendations. 2016.http://www.bma.org.uk/working-for-change/improving-andprotecting-
health/end-of-life-care#recommendations
2 Scottish Government. Realistic medicine. 2015. http://www.gov.scot/Resource/0049/
00492520.pdf.
3 Parikh R, Shah TG, Tandon R. COPD exacerbation care bundle improves standard of
care, length of stay, and readmission rates. Int J Chron Obstruct Pulmon Dis
2016;11:577-83. doi:10.2147/COPD.S100401 pmid:27042046.
4 Murray SA, Boyd K, Sheikh A. Palliative care in chronic illness. BMJ 2005;330:611-2. doi:
10.1136/bmj.330.7492.611 pmid:15774965.
5 Gawande A. Being mortal: illness, medicine and what matters in the end. Profile Books,
2014.
6 O’Dowd A. Chronic underfunding in palliative care is key cause of poor care of dying
people. BMJ 2015;351:h4969. doi:10.1136/bmj.h4969 pmid:26374250.
7 Gibbins J, McCoubrie R, Forbes K. Why are newly qualified doctors unprepared to care
for patients at the end of life?Med Educ 2011;45:389-99. doi:10.1111/j.1365-2923.2010.
03873.x pmid:21401687.
8 National Institute for Health and Care Excellence. Care of dying adults in the last days of
life. NICE guidelines (NG31). 2015. https://www.nice.org.uk/guidance/ng31.
9 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.
BMJ Support Palliat Care 2016 [Epub ahead of print.] doi:10.1136/bmjspcare-2015-
001014 pmid:27075983.
10 National Palliative and End of Life Care Partnership. Ambitions for palliative and end of
life care: a national framework for local action 2015-2020. http://endoflifecareambitions.
org.uk/.
11 Leadbeater C, Garber J. Dying for change. 2010. http://www.demos.co.uk/files/Dying_
for_change_-_web_-_final_1_.pdf.
12 Scottish Public Health Network (ScotPHN). Palliative and end of life care in Scotland: the
rationale for a public health approach. 2016. http://www.scotphn.net/wp-content/uploads/
2016/03/2016_02_26-PELC-FINAL.pdf.
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For personal use only: See rights and reprints http://www.bmj.com/permissions Subscribe: http://www.bmj.com/subscribe
BMJ 2016;353:i2188 doi: 10.1136/bmj.i2188 (Published 18 April 2016) Page 2 of 2
EDITORIALS