Lessons learnt about end of life care
Findings from the British Medical Association’s project about the challenges of providing good palliative care
“The purpose of medical schooling was to teach how to save lives, not how to tend to their demise,” Atul Gawande, general and endocrine surgeon at Brigham and Women’s Hospital in Boston, writes in his bestseller Being Mortal.
How to talk about death and deal with the challenges of end of life care are not widely taught at medical school, and many doctors feel unprepared when faced with the clinical and communication challenges at the end of a patient’s life.
In 2015, the BMA explored these issues in greater depth and held workshops around the UK to hear from more than 500 doctors and members of the public about the challenges of delivering good end of life care. This article summarises the main findings.
Many doctors feel underprepared when dealing with end of life care
Doctors at all stages of their careers reported a lack of confidence around certain aspects of providing end of life care, including the complexities of assessing mental capacity, the administration of pain relief—“I feel like [Harold] Shipman is a spectre that hangs over me,” said one doctor—and communicating with patients and those close to them.
“I found it very difficult to talk to patients about dying prior to working in a hospice,” said a junior doctor who attended one of the workshops. “Firstly, because we’re not taught very much [about this subject]; and secondly, those kinds of complex conversations we leave to the senior consultants because they have more experience.”
“Being thrown in at the deep end,” was an expression used by newly qualified doctors to describe their experiences of caring for patients at the end of life. They cited a lack of exposure to patients who were dying at medical school and minimal training on how to have difficult conversations with patients about the end of life.
Many doctors responsible for providing patient care out of hours reported feeling alone or unsure of who to call in a crisis, highlighting the need for ongoing practical and clinical support to be available whenever it is needed.
Some doctors see the death of a patient as a failure
Many doctors involved in the consultation identified a reluctance to acknowledge and accept when a patient might be approaching the end of life. In many cases, this was simply because it was not recognised that a patient was approaching the end of life.
Patients with a clear diagnosis and prognosis, such as certain types of cancer, were perceived as receiving better palliative care than frail, older patients with multiple comorbidities or a non-specific diagnosis. This was because doctors tended to look at individual treatment episodes in isolation, rather than taking an overall view of care and starting to explore the patient’s wishes for the end of life with them.
In other cases, there was a deeply ingrained reluctance to accept that providing or continuing treatment might not always be in a patient’s best interests and that there was a need to make the shift to palliation. Many doctors spoke about initially viewing the death of a patient as “failing” in their role as a doctor but, with time and reflection, they had come to realise that they had a key role to play in supporting a good death. Indeed, one doctor remarked about her first experience of a patient’s death, “I thought I had failed because they had died. I didn’t fail because they died, but because I didn’t recognise they were dying.”
Supporting those close to a dying patient is key to good end of life care
In our discussions, patients frequently identified the wellbeing of family members and others close to them as a crucial concern, but this was rarely identified as such by doctors, who were generally far more concerned with clinical care and symptom control.
People who had experienced a recent bereavement described how the smallest of gestures from healthcare staff—such as a cup of tea, a shoulder to cry on, or encouragement to go and get some rest—had made a difference to their experience of caring for a dying relative. One respondent, who was involved in caring for their father at the end of his life, summarised the importance of this: “They looked after him, but they also looked after us, his family, and that I think was important . . . for my father’s wellbeing, his mental stability, as he went through his final days.”
Recognising and responding to the needs of a patient’s family members, involving them in discussions about care, and demonstrating to the patient that their loved ones’ needs are being considered, are examples of things that doctors can do to reduce patients’ anxiety at the end of life.
Providing support to family members after a patient’s death is important too
A major concern for patients at the end of life is the impact their death may have on family members, particularly when young children are involved. Those who had a negative experience of end of life care spoke of feeling “dropped” immediately after the death of their relative, and how although emotional support was provided while the patient was dying, it ended abruptly after death.
Many members of the public were aware that counselling and bereavement services existed, but few knew how to access them or where to go for support. Information about counselling and bereavement services, and how to access them, should form a core part of information provided to families.
Caring for dying patients can take its toll on doctors
The emotional toll of a patient’s death on the doctors who have been responsible for his or her care cannot be underestimated. Many doctors spoke movingly of deaths that had affected them—whether it was a patient they had grown particularly close to, because there were specific circumstances that stood out, or because of the cumulative effect of supporting patients and their families through grief and suffering over the course of their career.
The availability of formal or informal support mechanisms was highly variable between healthcare settings. Some doctors received support through case meetings or chats with more experienced colleagues, others felt they had to deal with their emotions on their own.
Box 1: Where next?
After the consultation, the BMA made several recommendations aimed at improving end of life care in the UK, which include:
- Governments need to make end of life care a priority and work with other organisations to develop a clear, funded plan of action
- The UK government should initiate and fund public information campaigns encouraging people to think about, and make known, their wishes regarding end of life care
- More funding is needed for bereavement services, including specific services for children. These need to be available and accessible consistently throughout the UK
- Medical schools should increase students’ exposure to patients who are at the end of life
- Doctors should receive more ongoing training in communication and listening skills in relation to end of life care. Specifically, this should include how to answer difficult questions in an open, transparent, and sensitive way
- Doctors of all grades should receive training in the basics of pain management and when to involve senior colleagues or colleagues from different disciplines in decisions regarding further management
You can read the BMA’s recommendations in full in the report End-of-life care and physician-assisted dying. www.bma.org.uk/endoflifecare .
Following on from this project, the BMA has written to medical schools and healthcare providers to draw attention to its findings and recommendations, and will now be working with other key organisations, including patient groups, to take them forward.
Box 2: Resources from The BMJ
- Oliver D. End of life care is everyone’s business. BMJ 2016;354:i3888.
- Berry M, Harris J, Sleeman KE. Supporting relatives and carers at the end of a patient’s life. BMJ 2017;356:j367.
- Hosker CMG, Bennett MI. Delirium and agitation at the end of life. BMJ 2016;353:i3085.
- Ruegger J, Hodgkinson S, Field-Smith A. Care of adults in the last days of life: summary of NICE guidance. BMJ 2015;351:h6631.
British Medical Association, UK
Competing interests: None declared.
Provenance and peer review: Commissioned; not externally peer reviewed.
- Gawande A. Being Mortal: Medicine and What Matters in the End. 1st ed. Metropolitan Books, 2014.