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

(accessed 22 May 2018).

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

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