End of life care still not living up to public and doctors’ expectationsBMJ 2016; 353 doi: https://doi.org/10.1136/bmj.i2188 (Published 18 April 2016) Cite this as: BMJ 2016;353:i2188
- 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
- Correspondence to: S A Murray
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, 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.