How can we ever know if someone has a good death? We can’t ask them, that’s for sure, though if we could I am sure we would find out some interesting things about what we assume people would like as they die.
Richard Smith based his recent BMJ blog on the death of a friend, proposing that cancer offers the “best” death (of course, in a world where nobody really wants to ever die). He posed his presentation of the death from cancer as a peaceful one, in which there was ample time to say goodbye to loved ones and visit special places.
Smith’s description of the “slow erasing” of self that occurs with dementia betrays far more of his own views of dementia and the ageing process than it does of a generally accepted view of good death. It appears that a mistrust of doctors is also at the core of Smith’s view of the good death. Deaths from non-malignant chronic organ failure are summed up in a single line – this type of death will have you “far too much in hospitals and in the hands of doctors”. The final line of his blog cautions us to stop trusting over-zealous oncologists and spending so much money on cancer research. As a devotee of the palliative way, I too take issue with inappropriate treatment and the disproportionate spending on research between oncology and it’s poor siblings, palliative care, dementia and organ failure. I would love to see that level of funding used to improve the control of difficult symptoms, or invested in researching psychosocial care, or exploring the barriers to discussing wishes around death and dying for people with different conditions and at different ages. Spending money researching individualised cancer treatments and biotherapies is important; but the spending is disproportionate to the priority given to spending money on the quality of death and dying.
I think there is a more fundamental issue here than whether people “trust” oncologists, or withdraw funding from research. There are many people breathing and living today as a result of the miracles of medical science. What is missing in the achievement of a “good” death that I think applies not just to cancer but to dementia and organ failure too, is virtue-based medical practice on behalf of the physicians. Oncologists are rarely over-zealous for the sake of it; over-interventionism in disease is more likely to be a consequence of poorly managed helplessness in the face of disease, something which not all doctors are taught at medical school. This helplessness can make it more difficult for doctors to rely on the phronesis (or prudence) that constitutes virtue-based medical practice. It is just as important a skill for a physician to be able to explore and understand the priorities for an individual person around the end of their life, as it is for them to investigate and treat disease ad infinitum.
Our views of what constitutes a “good” death are profoundly influenced by our own and society’s values, yet these values are often so deeply embedded that we cannot even see how closely we are attached to them. So it is obvious that in a society which values youthfulness and vigour, a death characterised by a “long, slow death” and accompanied by various losses of function (incontinence, immobility and so on) will be seen as awful. I think an individual’s perspective on what a good death is can tell you a great deal about the person’s values, and this in itself can help to guide many of the difficult choices that need to be made along the way. Smith’s view of the good death is a brave piece of writing in one respect; it tells us about what he considers to be important at the end of life: avoiding unnecessary intervention, being with family, and having time to say goodbye. Many people will share these views; they are all important things to consider when making choices about treatment and place of care at the end of life. In my opinion, these three are no less possible with a diagnosis of dementia or organ failure, if the person is aware from the beginning that their condition is a life-limiting one. I have witnessed many kinds of deaths; difficult, messy and painful, peaceful, spiritual and painful – in my experience this is not dependent on the disease. I believe that this is dependent on the person being empowered to make choices, supported not just by professionals but by a community that recognises the particular nature of their suffering, and seeks to ease it.
So what is a good death? I ask this question often, of members of the public, student nurses, qualified nurses, hospice staff and physicians. The answers are always different. In the words of Barbara Coombs-Lee, co-author of Oregon’s “Death with Dignity” law “I can’t presume to know what anyone else’s good death looks like. A good death is one that comports with the way we’ve lived our lives, with our manifest values and beliefs. And that is going to differ for everyone”
Some reading about “The Good Death”…