Our thinking at the moment is that our report will have six sections:
- The problem
- Enabling death
- Taming death (or rather failing to tame death)
- The economics of death
- Community responses to death
- And a box: the evolution on philosophical/social thinking about death
Below is an idea of what might be included in the section on taming death, probably the most controversial section. We will be grateful for any comments and suggestions.
The vanity of attempts to tame death
Vanity of vanities,” says the Preacher;
“Vanity of vanities, all is vanity.” Ecclesiastes 1
Evidence on the centrality of death in human experience and willingness to tame it
Ernest Becker, the cultural historian and psychoanalyst, won the Pulitzer prize for his book The Denial of Death in which he synthesised the thinking of many and argued for the centrality of death to human life. The book begins:
“The prospect of death, Dr. Johnson said, wonderfully concentrates the mind. The main thesis of this book is that it does much more than that: the idea of death, the fear of it, haunts the human animal like nothing else; it is a mainspring of human activity—activity designed largely to avoid the fatality of death, to overcome it by denying in some way that it is the final destiny for man.”
Becker argued that Søren Kierkegaard, the Danish philosopher and theologian, had arrived at the same conclusion more than a century earlier:
“But the real focus of dread is not the ambiguity itself, it is the result of the judgment on man: that if Adam eats of the fruit of the tree of knowledge God tells him “Thou shalt surely die.” In other words, the final terror of self-consciousness is the knowledge of one’s own death, which is the peculiar sentence on man alone in the animal kingdom. This is the meaning of the Garden of Eden myth and the rediscovery of modern psychology: that death is man’s peculiar and greatest anxiety.*
Both Becker, an atheist, and Kierkegaard thought that religion and its rituals “solved the problem of death,” but the decline of religion removes that “solution” for many
We might explore the evidence that a) deeply religious societies do “better” in relation to death and b) whether those with faith “die better.”
Science, medicine, and various social developments attempt to “solve the problem of death,” to “tame” it but cannot succeed.
Becker’s work was not taken seriously by scientists because psychoanalysis was thought (and is thought) to be a pseudoscience. Can we mention it in the Lancet?
But Sheldon Solomon and other experimental psychologists have conducted experiments that show that brief exposures to the idea of their own deaths can have powerful effects on what people do–for example, senior medical students will propose more aggressive treatment for patients. (There is some evidence that longer exposures to the idea of their own death may have the opposite effect–something very relevant to us if true.)
Arthur Schopenhauer argued that the will to live is overwhelming: “The will is a will to live; and its eternal enemy is death.” People will go to great lengths to stay alive.
This fits with the experience of many clinicians.
Economists have shown that people will pay large sums to stay alive when death is close.
It is this willingness that allows pharmaceutical companies to charge huge sums for drugs that will prolong life for only short spells in some people.
NICE is willing to pay more for a QALY when a drug treats a condition for which there is no cure.
The same willingness to pay to fend off death may explain why the NHS and other health systems are less willing to invest in end of life care.
Those medical specialties that battle death (oncology, cardiology) tend to have much higher status than those that are not associated with death (psychiatry, general practice) or are more accepting of it (geriatrics)
Attempts to tame death
- The explicit pursuit of immortality
Immortality is the ultimate answer to the problem of death, and religions offer it in some form.
The earliest human stories–as in The Epic of Gilgamesh–tell of the pursuit of immortality
Now, as Mark Connell describes in his book To Be A Machine, serious people (particularly from Silicon Valley) are investing large sums in the pursuit of immortality.
Have they any chance of succeeding?
What might the consequences be if they did?
What would be the cultural and environmental implications?
Would such a development not inevitably increase inequalities?
- The implicit pursuit of immortality
The medical research establishment or the pharmaceutical industry would never say that they are in pursuit of immortality, but they do speak of curing every condition–heart disease, diabetes, dementia, cancer, etc–leaving us to wonder what we will die from?
Do they speak of slowing aging? (I’m not sure.)
Frailty is the condition they cannot cure, making it increasingly the commonest form of death. (It would be good to assemble data on not individual causes of death but by the broad patterns of “sudden, intermediate (as cancer once was), and prolonged.”)
The research establishment has been attracted by the idea of “the compression of morbidity”–that we would be fit and healthy until close to “the natural limit of life” (perhaps 85) and then fall apart/die quickly and cheaply. The idea was proposed in the 80s. Is there any evidence for it? Is there evidence that it isn’t happening?
Life expectancy has been increasing faster that “healthy life expectancy” in the UK, meaning the length of life spent unhealthy has increased?
The evidence is that life expectancy and healthy life expectancy are strongly determined by social factors. The poor both die younger and spend longer (absolutely or proportionately) in poor health.
Politicians and health service leaders always talk of people living longer as “success,” but is it really?
Much of current medical research is focused on “personalised” or “precision” medicine, with the possibility of big benefits (life extension?) for some but not for others.
Does the implicit pursuit of immortality raise many of the same questions as the explicit pursuit?
- Overtreatment at the end of life
We have lots of evidence of this. We must gather it together.
What are the drivers of it?
It is increasingly recognised–by the Royal College of Physicians, the Academy of Medical Sciences, C-TAC in the US, and by most doctors–but it seems hard to stop (rather as it’s easy for Caesarean section rates to rise but very difficult to bring them down)
Robin Taylor, a physician in Scotland, was funded by his hospital to have a one-on-one conversation about end of life care with all 165 consultants in the hospital. Only two refused to speak to him, and less than 5% of those he did speak to did not think that there was a problem of excessive care at the end of life. Most of the consultants had never had such a conversation about how they practised. Junior doctors, says Taylor, recognise the problem but find it impossible not to be complicit in excessive care. Taylor doesn’t feel that practices at the end of life have changed despite his conversations.
We need more evidence along these lines.
What are the cultural variations in end of life care? Are things better in, for example, Bhutan, where everybody is encouraged to think of death five times a day?
What are the implications for inequalities?
What about the conflict around end of life care, particularly the extreme cases of Charlie Gard and Alfie Evans?
It could be interesting to explore whether doctors die differently from their patients–are unwilling to inflict on themselves what they inflict on their patients.
- The Liverpool Care Pathway
This was an attempt to improve care in the very last hours of patients dying in acute hospitals that went badly wrong.
What was the problem it was trying to solve?
Why did it go wrong?
What has happened since its demise–are things better or worse?
Are there examples from other countries of similar attempts? If so, what has happened with them?
- The “good death”
We can probably all accept that there are better deaths and worse deaths, but do we have data?
In health care–and much else–data are essential for improvement, but is it possible to measure the quality of dying?
Place of death has been used as a surrogate for quality of dying, but there seems to be growing acceptance that it is a poor–even misleading–measure?
Can we suggest better ways of measuring the “quality of dying”? If we can’t many of the questions we would like to answer will remain unanswerable.
There have been many attempts to define “a good death,” but is there any evidence of benefit from such definitions?
Is a definition of a good death as difficult as the definition of a good life? There is surely no single good life or good death.
What are the cultural variations in the definition of a good death?
What are the conflicts around the concept of a good death?
- Palliative care
Palliative care (or rather hospice care) has been caricatured as “deluxe dying for the few looked after by dowager duchesses.”
Has the emergence of palliative care as a specialty been beneficial or has it promoted the medicalisation of death?
Do we have convincing evidence one way or the other?
Has it let other doctors and health workers “off the hook,” allowing them to persist too long with “fix-it treatment” before simply handing patients over to palliative care?
Has it led to a stark separation between curative and palliative care?
Should all of the dying have access to palliative care? If so should resources be shifted from curative care to palliative care?
Or if not all the dying need palliative care who are those who do?
Does palliative care have a special culture that causes it to be mocked/scorned/stigmatised by acute care doctors? Might that be one of the reasons it’s the most feminised of all the specialties (is it?)? Might the special culture (with religious overyones?) explain why so many palliative care physicians are strongly opposed to assisted suicide?
What are the cultural variations in attitudes to palliative care?
Does the existence of palliative care promote inequalities?
Hospices are the “palaces of palliative care”?
Does it make sense to separate the dying from others?
If hospices add value why must they be funded by charity?
Do hospices need radical rethinking? Should they cease to be buildings and be serevices?
What are the cultural variations in thinking about hospices?
Do hospices promote inequalities at the end of life?
- Assisted dying
For an increasing number of people in developed countries, particularly “baby boomers,” assisted suicide is the “answer to the problem of death.” You can maintain, what Becker calls, your illusions that give your life and death meaning and then be neatly despatched before the existential doubts and questions that come at the end of life arise.
But if most of us are going to die of frailty when is assisted dying going to be acceptable? Simply when death is close, or when people decide they have had enough? And what to do in cases of dementia?
Baby boomers value autonomy and control, and assisted suicide seems to be spreading. It could be interesting to track the spread and see where it may spread to next.
In countries where assisted suicide is available most people don’t die that way. Is there evidence of “comfort” being increased simply by the choice being available?
Assisted suicide is hugely contested, and we don’t need to rehearse the arguments for and against. But we do need to acknowledge the conflict.
We should look at cultural variation in attitudes to assisted suicide and ask whether it increases or decreases inequalities. If, as in Britain, at the moment you have to travel to Switzerland then presumably assisted suicide is more available to the wealthy. Can we get any data on who does go to Switzerland?
- Advance decisions
Advance decisions come in many forms with different names, and it will be helpful to summarise the different forms.
They are now legally binding in England if composed correctly.
How are they spreading internationally?
Do we have data on how many people have them and whether the ones they have are correctly composed?
It seems that few people, including doctors, have them. Why is that? More death denial? How many palliative care workers have them?
Do we have data on how often they are used?
Do we have data on the nature of advance decisions? There is an assumption that they are mostly intended to defend against excessive treatment, but do some people have them for the opposite reason–to ensure that they have “the works” at the end of life even if their family don’t want that?
Again, what are different cultural attitudes to advance decisions? Presumably they may be acceptable to some faiths but not to most (on the assumption that they are mostly about refusing care that could extend life)?
- The lawyerisation of death
Advance decisions are one way in which lawyers are becoming more involved in end of life care, and the courts become involved when the health system and the patient/patient’s family take different views on what actions to take or not take.
Is lawyerisation increasing or decreasing?
Is there evidence on benefits and risks?
How does it vary by jurisdiction?
- Death awareness activities–campaigns, death cafes, death festivals etc
The “death awareness movement” (of which we are a part) is spreading.
What forms does it take and how is it spreading?
Is there any evidence that being more death aware makes for a better death?
Are there examples of learning from other cultures that handle death better? Kerala?
Who are the people who participate in death awareness? Are they predominantly well to do?
Do the death aware movements have particular aims (promoting palliative care, advanced decisions, assisted suicide, or whatever) or are they simply about encouraging conversations about death?
- Death proposes a fundamental a “problem” to all humans
- The “problem” is “solved” mostly by deep denial and by the adoption of all sorts of illusions
- Religion once provided a “complete” answer, but in many societies religion has faded
- Medicine and science have stepped into the breach
- They are part of many attempts to “tame” death, but these attempts at “taming” mostly have small benefit and may often make things worse