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)

 

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16 thoughts on “First draft of the problem we want to explore and respond to in the Value of Death Commission

  1. Thank you Richard, some very good questions/observations. A few comments/suggestions:
    The list seems weak on the psychological aspects of death and dying; including denial and other ways people cope with the knowledge of impending death, both Adaptive and Mal-adaptive. Need more on how the relationship between family and affected person influences the illness experience, communication, and dying process. Also we need more evidence on the impact of truth telling. We in palliative care teach this and we see that the common fear that patients will be negatively affected rarely occurs but it is a very complex area with many layers and not a lot of data. I would challenge the notion that the development of specialized palliative care increases the likelihood that other specialists will shy away. Turfing in medicine has been around much longer than either of us and if anything the specialty allows more focus on the needs of the dying by other physicians. Forty plus years ago when I started working in this field we thought we’d put ourselves out of business in 20 years. The philosophy of hospice and palliative care would become part of the fabric of ‘good care.’ We failed as there does appear to be a need or maybe need another 40 years to change the system.
    Every good wish,
    Stephen

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    1. Thank you, Steven, for these helpful comments. I will be revising the problem list and will take in your thoughts. The idea that palliative care may let other doctors “off the hook” is contested within the Commission. Something on the evidence on truth telling would be useful, although if evidence suggested that there were benefits from lying would we recommend it? Certainly I met a patient adviser at the College of Physicians who thought it quite wrong to tell somebody that they were close to death. I was surprised.

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  2. Agree with these. BUT.. Children’s palliative care services are forgotten again. Much of the world of medicine, and the world in general, digs their heads in the sand about life-limited children and children with rare disease/complex care needs, AND they also refuse to fully accept that children need palliative care and hospice. Children’s palliative care is a different specialty to adult palliative care and is not even mentioned above. This speaks volumes to the approx 3,800 Irish mothers ( figures by Quinn, Ling et al 2015) who were surrounded in medical care when their child was born, but who presently are given little to no care pathways or proper options for their dying or life-limited child.

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    1. Thank you for pointing this out. At our launch event in Bristol we had the mother of a child who died aged 12 speak eloquently about her experience and answer difficult questions, but–because we can’t cover everything in our first round–we decided not to consider child death as a specific topic. We aim, however, to consider children within the broader topics we plan to cover. I will put something about these on the website soon.

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  3. I have personal experience of a good death in a hospital, a bad death in a run for profit care home, where nursing care was supposed to be provided (at huge expense for the person dying) leaving relatives a terrible memory of the death. Also a death managed at home by a local hospice coming in. I feel strongly about end of life care and that it should be a good death leaving relatives without bad memories. I do have other death experiences and they have painful memories and in one case has left a young relative permanently scarred.

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  4. Every human born into this world has to die one day. That is something every healthcare provider as well as consumer / patient cannot forget. Doctors can do their best to help a patient, but cannot make someone immortal. We all need to understand that quality of life is more important than just living.

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  5. You refer to the neglect of “spiritual needs”, but there should also be an explicit reference to the ethical principle of dignity, which includes the individual right to ethical treatment. If medicine is “replacing religion as the ‘owner’ of death and dying”, then it must develop the concept of dignified treatment of all lost causes.

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    1. Thank you for this comment, Chris. Words are difficult here. To my thinking dignity and spirituality are very close, but we need to be more precise in both defining the problem and thinking about responses. We are at least clear that spirituality and religion are not the same thing.

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  6. Thank you for your effort to tackle this challenging topic. I would like to add my support to the issue of death in the early stages of life , even more specifically death of neonates and infants. As a nurse midwife of over 20 years, I have seen the lower limits of viability be pushed down further with bulging NICU sites across varying GDP’s, adding significantly to many families / societies emotional, financial, and social burdens. Pregnancy was not always meant to result in ” threescore and ten” perhaps the spirits mission is complete in 22 weeks..here for a moment leaving a lifetime of love

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  7. I would like to see additional statements to support the fact that education, housing, city design, environment, and the like, do more for health than does health care. This is especially true for low-income countries where all of those, even healthcare, are neglected. However, healthcare can easily be placed on the spot when really bad. On the contrary, education, housing, city design, environment, and so on, are really invisible and not discussed as health determinants. There is a need to provide people with the information they need to take care of their health and the health of others under their responsibility (Honduras HIFA Country Representative).

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  8. Thank you for this blog which broadly covers many areas of this important issue. There is an increasing number of people who are caught up in both emergency and long-term humanitarian situations . They may be economic migrants, or displaced through war, political unrest, poverty, natural disasters and diseases such as Ebola . High death rates are an integral part of these situations and may people die suddenly, uncared for , in traumatic situations and separated from family, home and culture. With little or limited medical care or spiritual support. Will this often forgotten group be included?
    I would also ask that special issues around children and death be included and consideration of the value of death
    of those babies who die before, during or soon after birth.

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  9. A welcome initiative, because not just health, it is across many sectors that death is not given the importance that it should have. Every human being knows that death is an ultimate, unavoidable vent for him or her. Yet it is taboo in many cultures and religions to talk about it. Overtreatment and undertreatment occur in low and middle income countries as in the high income ones. This first draft discussion overlooks undertreatment which by anecdote may actually be more common in LMICs because of their weak health systems. Weak health systems predispose to delay in access to care leading to complications and advancing of the disease especially cancers. Complicated and advanced diseases are more difficult to treat and more expensive, but more importantly it leads to Bad Death. Pain generally is poorly managed in LMICs because of the lack of morphine and shortage of providers with the knowledge and skills of end-of-life care. As efforts are made to tackle overtreatment and other causes of bad death listed in the draft undertreatment should be tackled too.

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    1. Thank you for your comment. We have less emphasis on under treatment and under provision–because they were the main considerations in the Lancet Commission on Palliative Care. We must, however, make it clear that under treatment is probably commoner than over treatment.

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  10. I agree that it is essential to relook at how we define death and how we position dying in society. It also necessary to see how the medical industry and the media is creating false hope by mainly reporting the positive cases in the media and leaving the hard work of discussing futile treatment with patients and families to doctors. This is especially placing a significant burden on LMIC where many novel therapies are not available, and many patients and families spend thousands of dollars trying to access these treatments in foreign countries.

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  11. The problem prosaic is very good and all I see with healthcare today. Here are some further thoughts:

    1. There needs to be something on the importance of education for clinicians but also with society and citizens. Why is this not taught or discussed more widely?
    2. It would be good to see something about suffering. I often see patients get to a certain point with frailty, chronic disease or age and then they suffer and do not live. What is the relationship with suffering and death – where does it fit on the paradigm? You highlight this on the point about ‘biographical’ pain.
    3. Resources including research too, academic appointments, funding grants most geared towards immortality.
    4. Agree resources are shifted to the old and possibly creating intergenerational unfairness. However not being explicitly seen.
    5. The problem should also be viewed from a system level. The system as a whole has also made the process of dying so complicated with added levels of bureaucracy, paperwork, multiple funding avenues/requests – patients and their families suffer.

    I hope this helps further refine the problem

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