Useful comments on our draft of the problem we are exploring. These should sharpen our thinking.

First draft of the problem we want to explore and respond to in the Value of Death Commission

Richard Smith  Uncategorized  January 7, 2019 2 Minutes

Einstein said that if he had an hour to solve a problem he would spend 55 minutes defining it and five minutes thinking of solutions.

We would like to agree on the problem we are considering and will welcome comments. We will keep developing the text of the problem until we are satisfied.

So please comment and ask others who you think might be interested to contribute.

 

Society and medicine have an unhealthy relationship with death, which means:

There is gross global inequality in how people die: many people in the world die without any access to care or morphine

A minor point, but why single out morphine? It might signify a certain sort of attitude towards death and dying, one that is itself medicalized. Why not just end with “care”? In any case, other drugs are frequently used, such as midazolam and for some sorts of pain morphine will not be any good (e.g. NSAIDs for bone pain).

Overtreatment is common in high income countries at the end of life

Overtreatment is spreading to people in low and middle income countries, often pushing families into poverty

This may be true (I don’t know the evidence), but clearly there is a balance to be struck. Our daughter worked for a year for Hospice Uganda. She (as an “F3”) was the only doctor in the region working for the organization and was seeing people with horrendous conditions with no treatment at all. We need to keep in mind that many parts of the world are lacking even the most basic levels of care.

Doctors find it hard to talk to patients about death and dying and opt instead for continuing treatment

This is one of those common statements which I always wish to challenge. Partly this is me being defensive of doctors; partly it reflects my own part of medicine where there is talk of dying. But mostly I object to it because I think it is a simplistic assessment of what’s going on. It’s not that all we need to do is get doctors talking about death and dying and all will be well. For a start, it’s sometimes difficult to talk about death and dying because families and patients do not want to talk about it. So it’s not doctors who don’t like talking about this, it’s society (it takes two to tango). But even that statement is too general. Actually, it’s natural in a sense not to wish to talk about it, even though death and dying are “natural”. Furthermore, the inclination to opt for continuing treatment has multiple causes, some of which are perfectly proper, e.g. hope. Others are more odious, such as the publication of hospital mortality rates. And there are the more nebulous issues, such as the societal inclination that was manifest in the outcry that surrounded the Liverpool Care Pathway.

Spiritual needs are neglected; indeed, perhaps medicine is incapable of responding to those needs

Many people die badly (we know what people die of and at what age, but we know little about the quality of dying; place of death is a poor measure of quality of death)

I’m not sure about this. Much of the data is retrospective, but there have been a number of studies, some now seminal, looking at dying or the end of life in dementia.[1] I don’t know about data in other specialties. This is not to say that we couldn’t know more and not to say that the present data couldn’t be challenged.

Overtreatment at the end of life is a major driver of heath costs and of expenditure being concentrated in hospitals, where most deaths take place; this high expenditure crowds out other programmes around education, housing, city design, environment, and the like, which do more for health than does health care

Yes, and the reason for overtreatment is partly a failure to recognize dying and accept it, which is also part of the societal attitudinal problem I was referring to above.

Resources are shifted to the old rather than the young, creating intergenerational unfairness and possibly conflict

Well, it would be interesting to see the detailed data to support this to prevent it simply being a bit of ageism! I’m sure it’s true that over a lifetime most healthcare expenditure occurs in the frail older old. Still, arguably, most old people are not receiving the care that they need. You might wish to make direct comparisons between (a) a baby in special care; (b) a person living with an intellectual disability; (c) a person living with dementia; and (d) an older old frail person living at home. The thing that counts against the older generation is the number of them, but in individual cases, they often do worse. Consider the way we house people with intellectual disabilities and the way we house people with advanced dementia. Many would argue that resources are shifted to the young away from the old. Look at the evidence of ageism in terms of medical care. Harry Lesser (amongst others) has edited books about these issues.[2]

Medicine has come to see death as “failure” rather than “normal”

Again, this is one of those grand statements that I’d like to question. Is it “medicine” or is it “society” (whatever that is)? Do I give the next medication or perform the next operation because I see death as failure or because I think there is some hope? Or do I do it because of the pressure from the family or from the NHS Trust (which in turn is worried about the local media) or from a background fear of litigation (i.e. it’s not the fault of medicine, it’s the fault of the lawyers!) or simply because I’m curious to see whether we can change things for the better and so on? In other words we should embrace the dictum that Wittgenstein was keen on using from King Lear, “I’ll teach you differences”. There are different things going on here. And sometimes we give the next treatment, not because we see death as failure, but with palliative intent. For instance, there is data from The Netherlands that doctors may use antibiotics in people with severe dementia not to effect a cure, although the antibiotics might do that, but with palliative intent[3] because they can, e.g. ease the distress caused by infected bronchial secretions.[4]

Resources in medicine and medical research are concentrated on countering mortality rather than morbidity

Again, is this too simplistic? Perhaps resources are concentrated on countering morbidity and the inadvertent effect is that we counter mortality.

Medical research implicitly (curing cancer, heart disease, dementia, neurological disorders, etc) is implicitly if not explicitly pursuing immortality

For the record, this was an issue that the Nuffield Council on Bioethics looked at a while ago in its Bioethics Briefing Note: The Search for a Treatment for Ageing (2017).[5]

Death increasingly occurs in old age and from prolonged frailty, giving people a long time to experience “biographical pain” and generating large costs

The “compression of morbidity” is pursued but seems to be a myth

Is this statement based on data? Or just on a lack of data? There is some evidence that greater longevity brings fewer, not more, years of disability.[6] The Newcastle 85+ Study showed that, despite older people having 4-5 comorbidities, they regarded their quality of life as good.[7]

Palliative care is beneficial, but is not available to most people in the world–and its existence as a medical specialty can mean that doctors in other specialties shy away from death

Do they “shy away from death” or do they appropriately use their colleagues’ expertise? And, anyway, have they not imbibed some of the good practice that palliative care have shared with them?

The curative medical model is pre-eminent as a driver of health service priorities; supportive and palliative care services remain marginal, often relegated to charitable NGOs

Plans for developing health systems often give little or no attention to end of life care

One of the main jobs of culture/religion is to provide meaning to life and death and rituals to govern death and dying, but medicine replacing religion as the “owner” of death and dying has led to loss of meaning and rituals around death and dying. People are left with an existential crisis that medicine can’t help (Ivan Illich)

“In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.” (Atul Gawande)

I should say that, overall, I like the direction of travel in this document. But I am concerned by some of the clichés that are used, perhaps without evidence and without nuance. To take the Wittgensteinian line, we should always be looking for the details or differences that show that things are not generally simple. It’s not simply that doctors fear death etc..

I’ll look forward to seeing what happens next!

[1] McCarthy, M., Addington-Hall, J. & Altmann, D. (1997) The experience of dying with dementia: a retrospective study. International Journal of Geriatric Psychiatry, 12, 404–409.

Mitchell, S. L., Kiely, D. K. & Hamel, M. B. (2004) Dying with advanced dementia in the nursing home. Archives of Internal Medicine, 164, 321–326.

[2] Lesser, H. (ed.) (2012). Justice for Older People. Amsterdam and New York: Ropodi.

Lesser, A.H. (ed.) (1999). Ageing, Autonomy and Resources. Aldershot: Ashgate.

 

[3] van der Steen, J. T., Ooms, M. E., Ader, H. J., et al (2002a) Withholding antibiotic treatment in pneumonia patients with dementia: a quantitative observational study. Archives of Internal Medicine, 162, 1753–1760.

[4] Clayton, J., Fardell, B., Hutton-Potts, J., et al (2003) Parenteral antibiotics in a palliative care unit: prospective analysis of current practice. Palliative Medicine, 17, 44–48.

[5] http://nuffieldbioethics.org/project/briefing-notes/bioethics-briefing-note-search-treatment-ageing

[6] Baltes PB, Mayer KV, eds. The Berlin ageing study. Cambridge: Cambridge University Press, 1999.

 

[7] Collerton  et al. Health and disease in 85year olds: baseline findings from the Newcastle 85+ cohort study. BMJ 2009;399:b4904 doi:10.1136/bmj.b4904

The vanity of attempts to tame death: a draft outline of a section of the Lancet Commission on the Value of Death

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

  1. 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?

  1. 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?

  1. 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.

  1. 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?

  1. 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?

  1. 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?

  1. Hospices

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?

  1. 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?

  1. 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)?

  1. 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?

  1. 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?

Conclusion

  • 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

 

 

First draft of the problem we want to explore and respond to in the Value of Death Commission

Einstein said that if he had an hour to solve a problem he would spend 55 minutes defining it and five minutes thinking of solutions.

We would like to agree on the problem we are considering and will welcome comments. We will keep developing the text of the problem until we are satisfied.

So please comment and ask others who you think might be interested to contribute.

 

Society and medicine have an unhealthy relationship with death, which means:

There is gross global inequality in how people die: many people in the world die without any access to care or morphine

Overtreatment is common in high income countries at the end of life

Overtreatment is spreading to people in low and middle income countries, often pushing families into poverty

Doctors find it hard to talk to patients about death and dying and opt instead for continuing treatment

Spiritual needs are neglected; indeed, perhaps medicine is incapable of responding to those needs

Many people die badly (we know what people die of and at what age, but we know little about the quality of dying; place of death is a poor measure of quality of death)

Overtreatment at the end of life is a major driver of heath costs and of expenditure being concentrated in hospitals, where most deaths take place; this high expenditure crowds out other programmes around education, housing, city design, environment, and the like, which do more for health than does health care

Resources are shifted to the old rather than the young, creating intergenerational unfairness and possibly conflict

Medicine has come to see death as “failure” rather than “normal”

Resources in medicine and medical research are concentrated on countering mortality rather than morbidity

Medical research implicitly (curing cancer, heart disease, dementia, neurological disorders, etc) is implicitly if not explicitly pursuing immortality

Death increasingly occurs in old age and from prolonged frailty, giving people a long time to experience “biographical pain” and generating large costs

The “compression of morbidity” is pursued but seems to be a myth

Palliative care is beneficial, but is not available to most people in the world–and its existence as a medical specialty can mean that doctors in other specialties shy away from death

The curative medical model is pre-eminent as a driver of health service priorities; supportive and palliative care services remain marginal, often relegated to charitable NGOs

Plans for developing health systems often give little or no attention to end of life care

One of the main jobs of culture/religion is to provide meaning to life and death and rituals to govern death and dying, but medicine replacing religion as the “owner” of death and dying has led to loss of meaning and rituals around death and dying. People are left with an existential crisis that medicine can’t help (Ivan Illich)

“In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.” (Atul Gawande)

 

Members of the Lancet Commission on the Value of Death

Jane Blazeby (Bristol, UK): professor of surgery, Bristol University; proponent of randomised trials in surgery, and working to change surgical culture, including around death

Tracey Bleakley (London, UK): chief executive of Hospice UK

Yali Cong (Beijing, China) is professor of bioethics, dean of the department of medical ethics and health law, and chair of Peking University institutional review board. She has overseen a dissertation on decision making of cancer patients and teaches on assisted suicide, using the philosophies of Confucianism, Daosim, and Buddhism.

Robin Durie (Exeter) is senior lecturer in political theory and principal investigator at the Wellcome Centre for Cultures and Environments of Health; and cofounder of the Connecting Communities [C2] progamme for transformative community regeneration.

Eric Finkelstein (Singapore): health economist, professor of health services and systems research program at the Duke-NUS Medical School; executive director of the Lien Centre for Palliative Care; researches the complicated decisions that revolve around end of life care

Nahla Gafer (Khartoum, Sudan): clinical oncologist and head of palliative care unit at Radiation and Isotope Center Khartoum, director of palliative care courses at Comboni College of Science and Technology.

Sam Guglani (Cheltenham, UK): oncologist; director and founder of Medicine Unboxed, an events project that aims to engage public and health professionals in exploring medicine, life, and mortality through the arts and humanities; author of Histories, a book about hospital life

Malcolm Johnson (Bristol, UK): visiting professor of gerontology and end of life care at the University of Bath; emeritus professor of health and social policy at the University of Bristol; author of The Cambridge Handbook of Age and Ageing and many other books; interested in the idea of “biographical pain,” intense suffering that can result from memories at the end of life

Jenny and Celia Kitzinger (Cardiff and York, UK) (job share): Jenny is director of research: impact and engagement, Cardiff University, and codirector of the Cardiff-York Coma and Disorders of Conciousness Research Centre and curator of  the Before I Die Festival – a festival for the living about dying; Celia is professor in sociology in York University,  codirector of the Cardiff-York Coma and Disorders of Conciousness Research Centre, and a scholar-activist for whom academic research and social change are inextricably linked.

Felicia Marie Knaul (Miami, US)Professor at the Leonard M. Miller School of Medicine and Director of the Institute for Advanced Study of the Americas, University of Miami. a globally known health and social sector economist. Her current research focuses on global health, access to pain control and palliative care, health financing, health systems and reform, cancer and especially breast cancer in low- and middle-income countries, poverty and inequity, and gender equity.

Arnoldo Kraus (Mexico City, Mexico): physician who has written extensively about death and dying in books and columns in two newspapers in Mexico

Julia Neuberger (London, UK):  senior rabbi at West London Synagogue; member of the House of Lords; chair of a Review of the Liverpool Care Pathway for Dying Patients, and author of Is that all there is? – reflections on life, mortality, and leaving a legacy.

Mark O’Connell (Dublin, Ireland):  journalist, author of To Be A Machine: Adventures Among Cyborgs, Utopians, Hackers, and the Futurists Solving the Modest Problem of Death

Seamus O’Mahony (Cork, Ireland): gastroenterologist; author of The Way We Die Now

 M R Rajagopal (Trivandrum, India): palliative care physician; founder chairman of Pallium India, a palliative care non-governmental organisation based in Kerala

Eriko Sase (Japan, based in Boston):  researching into palliative care and human rights at the Kennedy Institute of Ethics, Harvard University

Sheldon Solomon (Saratoga Springs, US): professor of psychology at Skidmore College; one of the authors of The Worm at the Core: On the Role of Death in Life

Richard Smith (London, UK): former editor of the BMJ, blogger, has a talk “Death: the Upside”

Ros Taylor (London, UK): palliative care physician at the Royal Marsden, London; clinical director of Hospice UK

Katrina Wyatt (Exeter) is professor of relational health and deputy director for engaged research in the Wellcome Centre for Cultures and Environments of Health, University of Exeter. All her research is co-created with patients, service users, carers and people from low income communities to ensure their voices are at the heart of the questions we ask and the responses we develop.

Support from the Lancet:

Richard Horton, editor; Jocalyn Clark, executive editor

The commentary that launched the Lancet Commission on the Value of Death

This is the version of the Lancet commentary that launched the Commission that was submitted to the Lancet. The published version, which is almost exactly the same, can be accessed here.

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(18)32388-2/fulltext

We die so that others may live

We grow old so that others may be young.

Kate Tempest

Without death every birth would be a tragedy. Yet medicine continues to do all it can to keep individuals with life-limiting illnesses alive, often beyond the point of benefit. Western society and those in low and middle income countries able to afford Western medicine, have an uneasy relationship with death, in contrast to some traditional societies (1); and perhaps it’s becoming more uneasy as baby boomers, a uniquely privileged generation, approach death. Serious people hold out the prospect of immortality, (2) while dying baby boomers want  a combination that may be unachievable–as long a life as possible, symptom control, and a personalised death. Many doctors and patients feel  that medicine has gone wrong in its relationship with death. The Lancet Commission on the Value of Death will explore the relationship of medicine to death, consider failures in the relationship, and share tentative ideas on how it might be improved.

How a society responds to death and dying is perhaps the best measure of its health. Ivan Illich, the scourge of modern medicine, argued that “A society’s image of death reveals the level of independence of its people, their personal relatedness, self-reliance, and aliveness.”(3)  A survey by the English charity Dying Matters found that 64% of people do not feel comfortable talking to somebody who has a friend or family member who has died. (4) Yet doctors seem to be equally uncomfortable with death: a survey of general practitioners found that two thirds hadn’t talked to someone about their own end of life wishes, and 93% didn’t have an advanced directive. (4)

Many patients, families, and doctors think that modern medicine often goes too far in its attempts to fend off death, while at the same time we see protests outside hospitals when doctors and courts decide that the best option for a child is to be allowed to die. (5) The Lancet Oncology Commission called modern cancer treatment “a culture of medical excess,” (6) but Sam Gugliani, a British oncologist and member of the Commission, describes how every day he experiences the tension between the desire to be perpetually fixed and the simultaneous demonisation of therapeutic relentlessness.

It’s usually oncologists who are mentioned in debates about futile and excessive care because cancer strikes fear into people, death is often a prospect, and there are a wide range of treatments, many of them toxic, expensive, and of limited effectiveness; but much of medicine—consider intensive care, neonatology, or neurosurgery—involves difficult decisions on when to treat. The value placed on both life and death is crucial in those decisions, and if we regard life as valuable at any price and death as wholly bad, then poor decisions are likely to be the result. The oncologist Siddhartha Mukherjee quotes a nurse in his book on the history of cancer: “The resistance to providing palliative care to patients was so deep that doctors would not look us in the eye when we recommended that they stop their efforts to save lives and start saving dignity instead…doctors were allergic to the smell of death. Death meant failure, defeat–their death, the death of medicine, the death of oncology.” (7)

How well do people die? There are obvious problems in measuring the quality of dying, and “place of death” is used as a surrogate—but it’s clearly a poor measure. In Britain some 60% of people say that they would chose to die at home, but some 60% die in hospital. Britain’s National Confidential Enquiry into Patient Outcome and Death (NCEPOD) shows that many patients die badly in hospital. (8) Terminally ill patients, the Enquiry concludes, are suffering ‘distressing’ deaths because hospitals rush to try and resuscitate them, frequently against their wishes. Cardiopulmonary resuscitation has wrongly become the default setting in hospitals; yet nine out of ten patients had never been asked about their wishes should they suffer a cardiac arrest, despite being considered at high risk. (8)

There have been many attempts, including by doctors, to define a good death, (9) and usually it’s one that’s pain free, with symptoms controlled, dignified, inexpensive, and in a chosen place with chosen people. But is the concept of a good death beneficial? Seamus O’Mahoney, an Irish gastroenterologist and member of the Commission, argues in his book The Way We Die Now that it’s a false concept that tries to tame what cannot be tamed. (10) Are doctors increasing the medicalisation of death, a normal and universal experience, by creating the idea of a “good death”? Is it for doctors to define a “good death”? Should palliative care be a specialty? Has it extended the medicalisation of dying and let some doctors “off the hook” when it comes to caring compassionately for the dying?

The “war with death” is one of the main drivers of ever-increasing expenditure on health care, mostly hospital care. The US is heading inexorably towards spending 20% of its gross domestic product on health care, and all countries experience pressure to spend more on health care. We know that about a third of health care expenditure is in the last year of life, and we know that patients with advanced disease and their caregivers are willing to spend large sums for another year of life. (12 13) At the same time some doctors are “selling” illusions of longer life and pharmaceutical companies are profiting from very expensive drugs that prolong life for a few for only short periods. (14) Many–indeed, most–patients with life-limiting cancer do not understand that they are dying, a result perhaps of wishful thinking, denial, and poor communication by doctors. (15)

Some patients in their last week of life, writes Nahla Gafer, an oncologist and palliative care physician from Sudan and member of the commission, might be travelling long distances seeking an imaginary cure, illustrating that the problem of how to die is not unique to high income countries. These patients start investigations, including computed tomograms, when they are so weak, that they end up dying without any attention to pain management, comfort, or dignity. They die in strange lands in strange hospitals, surrounded with only one or two of family members who unwisely spent large sums of money just to ward off and deny death.

Illich’s core argument was that pain, sickness, suffering and death are fundamental to being human, and that the job of culture is both to give meaning to these inevitabilities and to provide means for coming to terms with them.(3) Modern medicine, he argued, promises to defeat pain, sickness, suffering and even death by technical means. But it’s a false promise and strips away the cultural mechanisms, leaving individuals exposed to existential pain. This may sound extreme, but interestingly and independently the surgeon and writer Atul Gawande reaches the same conclusion in his book Being Mortal: “In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.” (16)

So what might be done?

Changing cultural attitudes to death and dying is extremely difficult, The “positive death” movement has sprung up with death café’s, death festivals, and organisations like Dying Matters are trying to do so, bringing death closer to life. This thinking and these events need to reach everybody, and perhaps there is a role for doctors, these days the custodians of death, to provide a lead in changing attitudes to death. Perhaps hospitals, the palaces of death, should reach out into their communities and hold their own festivals of death. The royal colleges might provide a lead. Discussions on death and dying should feature more in medical education, both undergraduate and post graduate. There is, says Jane Blazeby, a British surgeon and member of the Commission, a need to learn to “say no” well. More multidisciplinary research could be beneficial, and cross cultural studies might be a rich source of learning.

The Lancet Commission on the Value of Death will have a global focus and concentrate on four issues: the medicalisation and possible demedicalisation of death and grieving; how people die, think of death, and grieve in different countries and cultures and what we might learn from each other; whether the battle with death is beggaring us financially and spiritually; and the utility of attempts to “tame” death, including advanced directives, assisted suicide, palliative care, the concept of a good death, and the pursuit of immortality.

You can see the list of members of the Commission at www.xyz, and we welcome contributions to our thinking.

 

Lancet Commission on the Value of Death

 

References

1  Kellehear,  A. A social history of dying. Cambridge: Cambridge University Press, 2007.

2 O’Connell M. Machine: Adventures Among Cyborgs, Utopians, Hackers, and the Futurists Solving the Modest Problem of Death. London: Granta Books, 2017.

3 Illich I. Limits to Medicine: Medical Nemesis – The Expropriation of Health. London: Marion Boyars, 1976.

4 Survey. London: Dying Matters, 2014. http://comresglobal.com/wp-content/themes/comres/poll/NCPC_Dying_Matters_Data_tables.pdf

5 Wilkinson D, Barclay S, Savulescu J. Disagreement, mediation, arbitration: resolving disputes about medical treatment. Lancet 2018: 391: 2302-5.

6 Future cancer research priorities in the USA: a Lancet Oncology Commission. Lancet Oncology 2017: 18;

7 Mukherjee S. Emperor of All Maladies: A Biography of Cancer. London: Fourth Estate, 2011.

8 National Confidential Enquiry into Patient Outcome and Death (NCEPOD). Time to Intervene: A Review of Patients Who Underwent Cardiopulmonary Resuscitation As a Result of an In-House Cardiac Arrest. London: NCEPOD, 2012. http://www.ncepod.org.uk/2012report1/downloads/CAP_fullreport.pdf

9 Smith R. A good death. BMJ 2000;320:129.

10 O’Mahony S. The Way We Die Now. London: Head of Zeus, 2017.

11 Institute of Medicine of the National Academies. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. The National Academies Press; Washington, DC: 2015.

12 Cropper M, Hammitt JK, Robinson LA. Valuing mortality risk reductions: progress and challenges. Resources for the Future. Discussion Paper no. 11-10. http://papers.ssrn.com/sol3/papers.cfm?abstract_id=1788975

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13 Comparison of preferences for end-of-life care among patients with advanced cancer and their caregivers: A discrete choice experiment. Palliat Med. 2015 Oct;29(9):842-50. doi: 10.1177/0269216315578803. Epub 2015 Mar 24.

14 Davis C, Naci H, Gurpinar E, et al. Availability of evidence on overall survival and quality of life benefits of cancer drugs approved by the European Medicines Agency: retrospective cohort study of drug approvals from 2009-2013. BMJ2017;359:j4530

15 Chen, C.H., S.C. Kuo, and S.T. Tang, Current status of accurate prognostic awareness in advanced/terminally ill cancer patients: Systematic review and meta-regression analysis. Palliative Medicine, 2016: p. 0269216316663976

16 Gawande A. Being Mortal: Illness, Medicine and What Matters in the End. London: Profile Books 2015