The covid-19 pandemic has led the General Medical Council and the Nursing and Midwifery Council to remind clinicians that decisions about cardiopulmonary resuscitation—and by implication, other resuscitation procedures—should be based if possible on individual wishes and needs. “The pandemic does not permit…health or care professional[s] to deviate from that approach by making decisions on a group basis. [They] must practise in line with their professional code and in accordance with the principles of person-centred and individualised care.” We agree. 

In an ideal world, everyone (having come to terms with the inevitability of death) would spend some time in healthy mid-life considering, recording, and communicating their end-of-life preferences in Advance Decisions (ADs), especially for situations in which they would lack the capacity to convey those preferences in person. However, surveys consistently show that in the case of dementia (one of the commonest of those situations) British, Canadian and Dutch citizens have clear and fairly predictable preferences. In our view, it is appropriate for clinicians to consider this “group” evidence in the difficult decisions about resuscitation and other intensive interventions that the pandemic has made so unprecedentedly frequent and distressing.

Dementia is a common co-morbidity in the over-70s who are most at risk of dying from (or with) covid-19 infection. Its incidence increases with age and it is now both the commonest single cause of death in the UK and more dreaded than cancer. [1] A 2007 survey in South East England also found that “..a large proportion of the UK general public do not wish for life-sustaining treatments if they were to become demented…” [2]

In a survey of cognitively unimpaired Quebec senior citizens, “When asked to imagine that they had Alzheimer’s disease, 76% indicated being somewhat or extremely likely to write a MAID [Medical Assistance in Dying] request for themselves; 74% would be somewhat or extremely likely to ask a physician to grant the MAID request of a close relative diagnosed with Alzheimer’s disease.” [3] Their average religiosity was in the lowest third on a scale derived from the Canadian General Social Survey. Most Dutch citizens would also not want any life-saving treatment in the event of getting dementia. [4]

In contrast, among members of a largely indigenous Dutch Protestant group polled in the same survey, “71% definitely or probably wanted artificial feeding and hydration, 67% wanted antibiotics for pneumonia, 59% wanted breathing assistance and 47% wanted resuscitation after cardiac arrest” even when “[they] no longer recognize…family or friends”. That is consistent with evidence from several countries, including the survey from the South East of England, that regardless of their particular faith, the more people identify as “religious”, the more likely they are in this situation to want maximal rather than palliative interventions for themselves and their family members.

An increasing majority of indigenous British citizens have no religious belief. [5] When the absence of ADs makes resuscitation a particularly difficult issue, patients’ mature, pre-dementia religious positions may be easier to ascertain than their specific views about life-saving treatments. Carefully considered ADs, with dementia-specific preferences, should be strongly encouraged (and perhaps even financially incentivized) but when they do not exist, cannot be found in time, or do exist but are ambiguously written, the surveys we have cited (without cherry-picking) could help doctors in these tragic and difficult times. That may not only make it more likely that dementia patients who develop severe covid-19 infections will be treated as they would have wished, but may also help frontline clinicians to feel that they did the right thing in a difficult situation.

We know that we are in a majority in this country when we say that if any of us were in this position, resuscitation would certainly not be in our best interests. Furthermore, we strongly suspect that most of the people who share our preference would also feel that the active treatment they—and we—reject should be given instead to those who are both more likely to survive resuscitation from covid-19 infection and to emerge from it with their cognitive functions reasonably intact.

Colin Brewer, convener of My Death, My Decision Medical Group.

Iain Chalmers, Co-founder, Cochrane Collaboration and Medical Patron, My Death, My Decision

Phil Hammond, Associate Specialist and journalist and Medical Patron, My Death, My Decision

Henry Marsh, neurosurgeon and Medical Patron, My Death, My Decision

David Nutt, professor of neuropsychopharmacology, Imperial College, and Medical Patron, My Death, My Decision

Wendy Savage, former obstetrician-gynaecologist and Medical Patron, My Death, My Decision

Competing interests: None declared. 

References:

1] Batsch NL, Mittelman MS.  2012.  World Alzheimer’s Report 2012: Overcoming the stigma of dementia.  Alzheimer’s disease International: London, UK.  Available at: http://www.alz.co.uk/research/WorldAlzheimerReport2012.pdf

2] Williams N, Dunford C, Knowles A, Warner J.  Public attitudes to life–sustaining treatments and euthanasia in dementia.  Int J Geriat Psychiat 2007 Dec;22(12):1229–34

3] Bravo G, 1,Trottier L, Rodrigue C, et al. Comparing the attitudes of four groups of stakeholders from Quebec, Canada, toward extending medical aid in dying to incompetent patients with dementiaInt J Geriatr Psychiatry. 2019;34:1078–1086.

4] Van Wijmen M, Pasman H, Widdershoven G, Onwuteaka– Philipsen B.  Continuing or forgoing treatment at the end of life? Preferences of the general public and people with an advance directive.  J. Med.Ethics.  Published online September 2nd 2014.  10.1136/medethics–2013–101544

5] https://www.theguardian.com/world/2019/jul/11/uk-secularism-on-rise-as-more-than-half-say-they-have-no-religion