Most writers with a theoretical background (academic law, philosophy, etc.) tend to assume that physicians are paternalistically biased when assessing decision-making capacity. Our interview study of 26 experienced consultation psychiatrists from 3 different jurisdictions about the difficulties they face when conducting capacity evaluations sheds some light on that issue, as well as on many others.
Some think it is obvious that we should take risk outcomes of decisions into account when assessing someone's decisional capacity. Others vehemently oppose this as an 'outcomes based' assessment. This longstanding debate is very complex, with writers often talking past each other, and it just might be useful to step back and review systematically the arguments used by both sides.
Does research comparing two 'standard' treatments hold any research risks? If so, how do we go about identifying such risks?
Eligibility conditions for assisted dying vary among jurisdictions. Several require medically based suffering, as in the Netherlands, but there is a perennial debate over this boundary, as when some advocate for 'completed life' as an eligibility criterion. I recently wrote a commentary showing the incoherence of suffering-based regimes. It builds on two earlier pieces that can be found here and here.
We just published the results of a survey of the US public regarding situations where the 'irremediability' condition for assisted dying (a common criterion especially in jurisdictions that allow non-terminal illness euthanasia) exists only because of lack of resources.
When the criteria for capacity are used loosely and without clear boundaries, there is a danger of unreliable, invalid judgments. How then should assessors apply what are admittedly very vague and broad criteria? Read about it here (short blog explainer) and here (full article).
Why do more women than men receive euthanasia for non-terminal, psychiatric conditions? Read about it here.
Should age matter when allocating scarce medical resources during pandemics like COVID-19? We conducted a deliberative study with English citizens. You can read the results here.
Most criteria for decision-making capacity are fairly broad, such as 'understanding,' 'reasoning,' 'using or weighing relevant information,' etc. They are so broad that they might mean different things to different assessors of capacity. Without more specific guidance, it might be difficult to make reliable, valid determinations. My colleagues and I recently analyzed over 130 actual judgments by experienced English courts to see how these concepts are actually applied and developed a typology that should prove helpful in making capacity determinations more transparent and reliable.
Making decisions for people who lack (or are presumed to lack) the capacity to make their own medical decisions can raise very difficult ethical questions. My colleague Alex Ruck Keene, an experienced English barrister in the Court of Protections, and I recently wrote a paper analyzing the potential unintended yet tragic consequences of how the English capacity law is increasingly being interpreted.
Imagine a clinical trial that compares two treatments that are already widely used by doctors for a given condition. Both treatments are 'within the standard of care' but it's really not known if one is better than the other. Suppose one treatment is more expensive than the other. Their comparative effectiveness would be valuable information. What kind of 'research risk' is there in such a study? Must research subjects give informed consent to be in such a study? I try to answer these questions in a recent online paper.
As a follow up to our study of published dementia EAS cases in the Netherlands, we provide a more in depth ethical analysis of a key finding from that study: contrary to the often stated view that dementia EAS in the Netherlands only involves either 'early' dementia (fully competent) or 'late' dementia (not competent and reliant on advance directives), there are many cases of patients receiving EAS based on their concurrent request despite significant decisional impairments due to dementia.
Two articles on euthanasia/assisted suicide and dementia may be of interest for readers. The first is an analysis of published cases in the Netherlands. The second is a survey of public attitudes toward the practice.
Noa Pothoven was a 17 year-old young woman with several psychiatric conditions from the Netherlands who died recently by self-starvation. Her death was initially reported in English speaking media as a euthanasia. I comment on her death and put it in the context of Dutch practice of psychiatric euthanasia here.
We and others have reported that personality disorders are quite common in persons requesting and receiving psychiatric euthanasia. We recently analyzed the Dutch psychiatric euthanasia cases involving persons with prominent personality difficulties (as described in their case reports published by the review committees).
My colleagues from King's College London (Alex Ruck-Keene, Nuala Kane, and Gareth Owen) and I just published a paper that will be of value to those working on the increasingly studied and debated topic of decision-making capacity. The paper (open access!) is a unique combination of an exposition of how Mental Capacity Act (England and Wales) works in the court system and an empirical review of that court system's experience over its 10 years of using the MCA.
SOME RECENT PUBLICATIONS
Kim SYH, Kane NB, Ruck Keene A, Owen GS. Broad concepts and messy realities: optimising the application of mental capacity criteria. Journal of Medical Ethics. 2021.
Nicolini ME, Gastmans C, Kim SYH. Psychiatric euthanasia, suicide and the role of gender. The British Journal of Psychiatry. 2021:1-4.
Kuylen MN, Kim SYH, Ruck Keene A, Owen GS. Should age matter in COVID-19 triage? A deliberative study. Journal of Medical Ethics 2021. DOI: 10.1136/medethics-2020-107071
Kane, N. B., Keene, A. R., Owen, G. S., & Kim, S. Y. H. Applying decision-making capacity criteria in practice: A content analysis of court judgments. PLoS ONE, 16(2), e0246521. doi:10.1371/journal.pone.0246521. 2021
Kim SYH & Ruck Keene A (2020). A new kind of paternalism in surrogate decision-making? The case of Barnsley Hospitals NHS Foundation Trust v MSP. Journal of Medical Ethics, medethics-2020-. doi:10.1136/medethics-2020-106797
Kim SYH. Comparative Effectiveness Research, Learning Health Systems, and Pragmatic Randomized Controlled Trials. In: Iltis AS, MacKay D, eds. The Oxford Handbook of Research Ethics. Oxford University Press; 2020.
Kim SYH, Mangino D, Nicolini M. Is this person with dementia (currently) competent to request euthanasia? A complicated and underexplored question. Journal of Medical Ethics. 2020
Mangino DR, Bernhard T, Wakim P, Kim SYH. Assessing public's attitudes towards euthanasia and assisted suicide of persons with dementia based on their advance request: an experimental survey of US public. The American Journal of Geriatric Psychiatry. 2020.
Kim SYH, Grady C. Ethics in the time of COVID: What remains the same and what is different. Neurology. 2020;94(23):1007-1008.
Mangino DR, Nicolini ME, De Vries RG, Kim SYH. Euthanasia and Assisted Suicide of Persons With Dementia in the Netherlands. Am J Geriatr Psychiatry. 2020;28(4):466-477.
Kim, S. How Dutch Law Got a Little Too Comfortable With Euthanasia. The Atlantic. June 8, 2019.
Nicolini, M. E., Peteet, J. R., Donovan, G. K., & Kim, S. Y. H. Euthanasia and assisted suicide of persons with psychiatric disorders: the challenge of personality disorders. Psychological Medicine, 1-8. doi:10.1017/S0033291719000333
Ruck Keene, A., Kane, N. B., Kim, SYH., & Owen, G. S. (2019). Taking capacity seriously? Ten years of mental capacity disputes before England's Court of Protection. International Journal of Law and Psychiatry, 62, 56-76. Open Access.
Miller, D. G., Kim, S. Y. H., Li, X., Dickert, N. W., Flory, J., Runge, C. P., & Relton, C. (2018). Ethical Acceptability of Postrandomization Consent in Pragmatic Clinical Trials. JAMA Network Open, 1(8), e186149. doi:10.1001/jamanetworkopen.2018.6149