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

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