Last spring, I was invited to give a talk by the British Geriatric Society, about the values that are important to people at the end of their lives when facing a terminal diagnosis. I tried to orientate it, using community as a lens, so that we could see death and dying in the context beyond that of the medical profession. In the talk, I referenced Kellehear, who writes and talks about the 95% rule[i]. The National Health Service and the medical profession actually provide such a small amount of care to the dying person – only around 5%, a tiny part of their reality. The other 95% of time they are looked afterby their families, their friends, carers and the volunteers who have worked to develop experience and knowledge. Yet this so often plays second fiddle to medical knowledge. Such work needs recognition, respect and support. Sadly, in researching my talk, I learned how our approach to the complexity and uncertainty of old age and frailty is fragmented and siloed, much like the support for people requiring palliative care. Palliative care is so often mistakenly thought to be synonymous with end of life care, but it isn’t. Increasingly there is evidence that it needs to be mobilised at the same time as the diagnosis of a life-limiting condition, whether it be cancer-related or due to chronic multi morbidity.
Structuring my talk, and looking at the evidence on what matters most to people at the end of life, three themes emerged: the need to de-medicalise dying and death and reinstate its place as a natural part of daily life; to diagnose dying and to communicate the process with the patient and their family; and finally to demonstrate how asking what matters most to patients makes it possible to tailor future care to their needs. If we can achieve these things, we can bring the patient into the centre of their care at this crucial stage in their lives and deliver support that fits with what matters to them.
By addressing these three themes it becomes possible to deconstruct the biomedical model of care. Taking dying and death out of the solely medical domain, becoming joint partners in caring for the dying patient in the broadest sense, facilitates holistic, personalised care and creates the opportunity for a more relational and compassionate interaction.
As I was preparing for the lecture, my brother-in-law was diagnosed with advanced metastatic cancer of unknown primary and was told by his oncologist that, in his weakened state, the chemotherapy would kill him. However, his mood changed and lifted in response to the consultation. When asked what it was about that consultation that had made such a difference to his demeanour, despite such a poor prognosis, he said it was the certainty of the outcome – no more was he to be the subject of distant multi-disciplinary team (MDT) meetings. He was listened to, his conversations with the oncologist were honest and open, and a trusting relationship developed. His care became proactive, and the palliative care team was mobilised and subsequently wrapped around him. It was a source of great comfort to him and his family.
With knowledge and information about dying comes empowerment. Death education can lead to prevention, reduce avoidable admission, reduce harm, allows early intervention and can assist re-orientation of the health services. Kellehear talks about promoting positive solutions. Normalising death can reduce the sense of isolation that comes with advanced illness and dying. A “new you”, someone living with loss and a life-limiting illness, allows others to look after you. Education around dying and death, teaching people that these things are neither unusual nor fearful, can help reintegrate them into everyday life, where they belong. In “When Breath Becomes Air,” Paul Kalinithi[ii] describes how, when discovering further treatment was futile, he had to redefine himself. He had to discover a way of letting go of the notion of fulfilling his lifelong ambition to be a neurosurgeon. Facing death as a young man, he realised that in accepting his fate, he was able to recognise that he still had life to live. Albeit with different ambitions – but he was very much still living.
Katherine Mannix[iii], a palliative care consultant and author of With The End in Mind, recounts stories of patients whose lives – and quality of life – had been enhanced by the knowledge and understanding of the course of their illness and of the dying process. She writes movingly about the relief that accompanies explanations about dying. Fear is dispelled, peace can ensue and people are able to treasure the time they have left. They appreciate small acts of kindness as they live with the reality of the fragility of life. Nothing is taken for granted.
Recent literature reviews[iv] have distilled what is most important to people at the end of their lives.
These are:
- Time to spend with family and friends, to make amends and to say what needs to be said
- Effective communication and shared decision making (relevant around choice of investigations and treatment)
- Respectful and compassionate care
- Trust and confidence in clinicians
- Avoidance of unnecessary intervention
Knowledge, honesty, integrity and openness are all important to patients, who value time with their families and friends, time to talk and time to prepare for death, whilst maintaining a quality of life until they die.
Why does diagnosing dying have to be so difficult? Paying attention to the course of a person’s history, the relapses and remissions, really hearing the narrative of their illness journey, is often more difficult to track with the fragmentation of care. In-hours and out-of-hours care, and siloed specialty services in hospitals, are more often geared for diagnosis and cure, rather than person centred, and holistic care. Reviewing such narratives and asking patients what matters most at this stage in their illness – after a recent admission, or intervention – and finding out what is most important for them can bring revealing and surprising answers. People may play down symptoms and their feelings about their demise to healthcare professionals, for fear that the doctor may give up on them. They are more likely to open up to auxiliary staff in hospital, or medical students. Maybe doctors, strapped for time, prefer to avoid the discomfort of discussing the unknown course of the illness and find it easier, as they have been trained to do, to come up with further intervention, a trial of treatment to avoid the disquiet of not knowing. Just because we can do things, it doesn’t mean that we should.
You may ask “Does it matter?” Of course it does! Because having a diagnosis of “dying” can shape access to support and facilitate the provision of good care. It can enable planning, allowing patients to anticipate care requirements. Prioritising can start. Doors to better care and help begin to open. An EOL diagnosis can lead to those patients being prioritised, which, unless incorporated into best practice, might disadvantage others in similar, as yet undiagnosed, predicaments.
Referring to the values that matter most when dying – trust, honesty, good access to care, and time to prepare for death – underlines just why it really does matter.
Dr Frances da Cunha. Retired GP and Trustee Human Values in Healthcare Forum
[i] Allan Kellehear: The social nature of dying and the social nature of health. In Oxford textbook of public health palliative care, 2022. https://doi.org/10.1093/med/9780198862994.003.0004 (Abstract)
[ii] Paul Kalinithi. When Breath becomes Air
[iii] Kathryn Mannix. With the End in Mind
[iv] Virdun, Luckett, Davidson, Phillips. Dying in the hospital setting: A systematic review of quantitative studies identifying the elements of end of life care that patients and their families rank as being important. Journal of palliative Medicine 2015 https://journals.sagepub.com/doi/10.1177/0269216315583032
[Photo by Ýlona María Rybka on Unsplash]