To help answer this question Colin Brewer, retired psychiatrist, and MDMD associate coordinator, wrote this piece:
I wrote this trip advisor for our final journey in September 2016, soon after the conclusions of couple of particularly relevant studies had been reported. One that reached the mainstream media showed that British doctors consistently over-estimate the length of time that patients are likely to live after receiving a fatal prognosis. I don’t suppose this surprised many people but it was useful to have further confirmation that doctors have an understandable tendency to deceive both themselves and their patients when it comes to death and dying. If you were to read only the euphoric letters that some palliative care physicians write to medical journals when a paper supportive of assisted suicide is published, you could easily conclude that for all but a tiny minority of patients, palliative care can make the last week or two of life a period of happiness and tranquility. On the whole, that is not what really happens.
Dr Sherwin Nuland’s ‘How We Die’, first published in 1993, is still one of the best (and best-written) guides to the commonest ways in which we will expire and is available on Kindle. Although the proportions differ a little, the inhabitants of Britain die of much the same things that Americans die of and similar changes in those proportions have occurred in the quarter-century since Nuland’s book was first published. For women – probably because they live longer than men – Alzheimer and other types of dementia, at nearly 15% of the total, has recently overtaken heart disease and stroke, at around 10% each, as the leading recorded cause of death. The three main cancers – lung, breast and bowel – add up to another 15%. Non-malignant chronic lung disease kills another 5%.
For men, heart disease (about 15%) lung cancer (7%) non-malignant lung disease and stroke (6% each) precede Alzheimer and other dementias (also about 6%) but when men and women are combined, cancer as a whole causes nearly a third of all deaths and diseases of the heart and circulatory system cause about another third. The remaining third is a collection of numerous diseases and events including accidents and suicide (less than 4%), kidney and bladder disease (less than 3%) and Parkinsonism, motor neurone disease and muscular dystrophy (less than 2% combined).
For both men and women, about 5% of deaths are attributed to ‘flu or pneumonia’ but neither of those conditions usually proves fatal to someone in reasonably good health, even if they are old. Death from those causes usually means that the victims already had one or more chronic illnesses that affected their lungs directly or indirectly, or that made them more vulnerable to an acute lung infection. They will often have been both elderly and frail but as Dr Nuland notes, statisticians seem to be horrified at the idea that anyone might die simply of old age, their organs and physiological processes having run out of steam, even though that is a very common cause of death.
In the UK, the 2010 ONS data for primary cause of death shown on death certificates is summarised in the pie chart below, (men and women combined). A more detailed breakdown of the data is available here.
The other article appeared in an American monthly journal. It didn’t cause so much interest in Britain but among other things, it discussed the surprising fact that very little research into dying had focused on accounts by dying people themselves of what they actually thought, felt and – in one study – dreamed during their last days. This apparent reluctance among researchers to speak directly to the dying about their situation probably reflected a degree of medical squeamishness. If true, it would merely reflect a more general squeamishness that might have surprised many in my grandparents’ generation, for whom death was a familiar event. However, another reason, discussed in the article, is that according to a senior palliative care nurse, many terminal patients “become too sick, or too drowsy, or too unconscious, to tell us what they’re experiencing”.
For people who prefer to remain reasonably clear-headed until hours or minutes before they breathe their last, this information may be useful. One review of patient preferences found that in order of importance, they were: “being in control, being comfortable, sense of closure, affirmation/value of the dying person recognized, trust in care providers, recognition of impending death, beliefs and values honoured, burden minimized, relationships optimized, appropriateness of death, leaving a legacy, and family care.” Although some people say they would prefer to die suddenly in their sleep without knowing, I imagine that many terminal patients would not want to put themselves and their families through several days of confused or rambling conversation, especially if the confusion or delirium caused frightening hallucinations.
Pain – a common feature in deaths from cancer but not from other causes – can usually be well controlled with opiates or nerve-blocks but sometimes at the cost of mental clarity. The powerful sedatives that may be needed to control extremes of restlessness and agitation may make life easier for nurses and carers but for the patient, they may simply exchange one form of distress for another.
Pneumonia used to be known as ‘the old man’s friend’ because it could shorten an unpleasant dying process. It still can, but there are many depressing stories of the way in which doctors feel obliged to treat pneumonia with antibiotics, even in patients who are obviously near death and would probably welcome its arrival. This is less likely to happen in a good hospice but the chapter on hospice care in I’ll See Myself Out, Thank You, the selection of essays on assisted suicide edited by Dr Michael Irwin and me, shows that even good hospice care cannot prevent some deaths that are truly horrible both to experience and to watch.
The cause of death that appears on a death certificate usually says nothing about the actual mode of dying. Cancer, for example, kills in a number of ways. The main effect of bowel cancer may be to cause intestinal obstruction rather than pain, though the unfortunate may have both. Obstruction causes vomiting – occasionally of faeces – and requires both oral and intravenous intubation; the former to keep the stomach empty, the latter to provide fluids and nourishment. Persistent nausea on its own can be just as distressing as actual vomiting. Terminal lung disorders like lung cancer and emphysema (mainly found in smokers) or cancer spreading to the lungs from a nearby or distant tumour, often cause distressing breathlessness. Opiates relieve that too but they also reduce respiratory drive and doctors have to balance the relief against the risk of reducing blood oxygen levels to the point where brain function and mental clarity are seriously impaired. Failing brain function is an important factor in the incontinence that so often adds to the indignities of dying, however quickly nurses and carers manage to clean things up.
Sudden death or death within a few days is most likely to follow a heart attack or a severe stroke. Resuscitation after those events is most often successful in the relatively young and fit. In patients over 75, especially if their other organs are beginning to fail as well, restarting a stopped heart or maintaining respiration after a major stroke often leaves patients alive but with catastrophic brain damage that can easily land them on a conveyor-belt of steady disintegration that very few people would want for themselves. That is why having some sort of Advance Decision is so important. Unfortunately, the prevailing fear among hospital staff of criticism or – worse – litigation by family members, or of being accused of ‘ageism’, combines with a very understandable desire to give patients what may initially appear to be the benefit of the doubt to favour action over inaction. Only later does it become apparent that the patient would have been better served by not having been put on the conveyor-belt in the first place. As a kindly consultant told me during my elderly father’s terminal but mercifully brief period in intensive care after a fall; “It’s like riding a tiger. Once you get on, it’s difficult to get off”.
I sense that ordinary people – as well as members of MDMD and similar societies – are increasingly asking themselves whether the protracted nature of modern dying is really something that should be regarded as either normal or desirable. In France, everyone now has a theoretical right to ‘terminal sedation’. In many cases, that effectively means medically assisted suicide that is spread out over a few days, so that squeamish doctors and nurses can persuade themselves that they are really doing something else. While we wait for the ultimate right to choose the time and manner of our deaths, establishing that lesser right here would be a start. Equality among the living has proved an elusive and contentious political goal but emulating the French would offer a useful degree of égalité in death.
Dr Colin Brewer
Retired psychiatrist and MDMD Associate Coordinator