How our lives end must no longer be a taboo subject
Any day spent in a hospital emergency department shows how the illusion that we are in control of our lives can be shattered by the laws of nature, which can catastrophically change everything, unexpectedly rendering us helpless, damaged or dead.
The suddenly-ill are rescued by modern technological interventions whenever possible; it is assumed to be in the patients’ best interests to survive and recover. But the interventions may result in very little, if any, quality of life and instead only prevent “natural dying”. This is a new problem, born of technological progress. Where does it leave us?
This summer, after considering the case of a man known only as “Mr Y”, the UK supreme court clarified that judges need not be consulted if a clinical team and a patient’s family agree – after careful discussion following best practice and legal guidelines – that it’s not in the best interests of a patient with a prolonged disorder of consciousness to continue artificial hydration and nutrition. It is permissible to withdraw this treatment and allow their dying to proceed naturally.
I’m reminded about the weeks of thought and negotiation that a terminally ill young man and his family went through, so that together we could write an emergency healthcare plan that clearly mapped his wish to die at home; to accept temporary hospital treatment for reversible deterioration; to be sent home immediately if it should become apparent that he was dying; to avoid the use of a ventilator; and to have his dog and cat beside him, among his family, when he was dying. This document guided a highly complex episode of in-patient care in the last months of his life, when he was competent but too weary to discuss his treatment. Despite the gravity of his condition, he got his wish to die at home. That early planning was key.
This is unusual. In my practice as a palliative physician and clinical ethics committee member in a large teaching hospital, I observed how rarely families could agree and confidently report their loved ones’ wishes. Because people increasingly shun discussion of dying, their first-ever real discussion of endof-life preferences is often held near the point of death, with attendant anxiety, sadness and family tensions. This is less than ideal if a consensus is to be reached on what is in the best interests of the patient, or if disagreements are to be expressed safely and explored sensitively.
The process for making best-interests decisions, referred to by the supreme court judgment, is enshrined in the Mental Capacity Act (MCA, 2005) in England and Wales. This law allows us to exercise our legal right to decline medical treatment when we have the capacity to make that decision ourselves and to have our wishes respected should we lose capacity, either via an advance decision ( a legally-binding document that refuses particular treatments under specific future circumstances), or by appointing someone to be our attorney, whose powers specifically include making decisions on our behalf about “life-sustaining treatment” when we don’t have capacity to do so. In the absence of this kind of advance planning, a thoughtful and thorough exploration of a person’s previous views and values is mandated. Did they express the view “I’d rather be kept alive without consciousness than die” or “I’d prefer to be allowed to die than to live without consciousness”? These views should be equally respected during the negotiations to reach a decision on the best interests of the patient.
The supreme court judgment has caused alarm among people with disabilities and long-term medical conditions, who see themselves as vulnerable to misperceptions of what their quality of life entails; and among people who view artificial feeding and hydration as basic care rather than “treatment”. These personal, philosophical or spiritual values should not be ignored. After all, the medical and legal professions serve not only individual patients but also underpin the public’s sense of safety, security and freedom from harm.
The level of public consternation rises whenever high-profile cases explore delicate decisions about life and
death, yet somehow that alarm doesn’t translate into helpful discussions about human mortality at a personal level. In 2014, the court of appeal judged that a hospital was wrong to place a do-not-resuscitate order on a patient without having discussed it with the patient and her family. The patient was very likely to be harmed by cardiac pulmonary resuscitation and so the hospital staff deemed it to be futile. They argued that there were clear grounds not to proceed and distress the patient. But the court found that “merely causing distress” was not a reason to avoid discussion of the futility of CPR. The ensuing public furore centred on the medical profession stripping patients of their “right to choose” life or death, and overlooked discussion of the harms and very low success rates of CPR in terminally ill patients.
As we age and develop longterm health conditions, our chances of becoming suddenly ill rise; prospects for successful resuscitation fall; our youthful assumptions about length of life may be challenged; and our quality of life becomes increasingly more important to us than its length. The number of people over the age of 85 will double in the next 25 years, and dementia is already the biggest cause of death in this age group. What discussions do we need to have, and to repeat at sensible intervals, to ensure that our values and preferences are understood by the people who may be asked about them?
Our families need to know our answers to such questions as: how much treatment is too much or not enough? Do we see artificial hydration and nutrition as “treatment” or as basic care? Is life at any cost or quality of life more important to us? And what gives us quality of life? A 30-year-old attorney may not understand that being able to hear birdsong, or enjoy ice-cream, or follow the racing results, is more important to a family’s 85-year-old relative than being able to walk or shop. When we are approaching death, what important things should our carers know about us?
In the conversations I have so often had with people sick enough to die and their families, I have come to appreciate that patience, compassion and skill must go hand in hand with honesty and realism. When chances of survival are waning, the hope for dying well is hugely important. Honest conversations are essential to facilitate this. For patients without capacity, we face the challenge of sifting “what the patient would want” from family opinions so that medical care matches the patient’s wishes. It is such a help when families report that dying was discussed, or provide a statement of wishes or an advance decision document; it helps us all to understand the patient’s thinking.
The supreme court judgment about Mr Y has clarified a point of law, and generated public discussions. In a death-denying society, this is an opportunity for us to consider our inescapable mortality, and to support each other to discuss and even write down our wishes and preferences for the last part of our lives.
Despite the gravity of his condition, he got his wish to die at home. Early planning was key