Decision-making capacity and surrogate decisions
I have been studying decision-making capacity for many years. This work has included studies of persons with schizophrenia and Alzheimer's disease, development of assessment tools, and philosophical and legal analyses of core normative issues.
Currently, most of my empirical work on this topic is in collaboration with researchers from King's College London/IoPPN in the UK. We recently created a very practical guidance on how to assess capacity that conforms to the Mental Capacity Act.
See my book on this topic.
A full text of my chapter on the ability to value as a needed criterion for decisional capacity.
A talk on capacity issues as they arise in research ethics context can be found here.
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.
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
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.
Kim SYH, Karlawish J, Kim HM, Wall IF, Bozoki A, Appelbaum PS. Preservation of the Capacity to Appoint a Proxy Decision Maker: Implications for Dementia Research. Archives of General Psychiatry 2011;68(2): 214-220.
Kim SYH, Appelbaum PS, Kim HM, Wall IF, Bourgeois JA, Frankel B, Hails KC, Rundell JR, Seibel KM, Karlawish JH. Variability of Judgments of Capacity: Experience of Capacity Evaluators in a Study of Research Consent Capacity. Psychosomatics. 2011; 52(4): 346-353.
Kim, SYH. The ethics of informed consent in Alzheimer disease research. Nature Reviews Neurology. 2011; 7: 410-414.
Seyfried L, Ryan KA, Kim SYH. Assessment of Decision-Making Capacity: Views and Experiences of Consultation Psychiatrists. Psychosomatics 2013; 54: 115-23.
Kim SYH. Varieties of Decisional Incapacity: Theory and Practice. British Journal of Psychiatry 2013; 203: 403–5
Kim SYH. The Place of Ability to Value in the Evaluation of Decision-Making Capacity. Philosophy and Psychiatry: Problems, Intersections and New Perspectives. D Moseley and G Gala eds. Routledge, New York. 2016
Eckstein L, Kim SYH. Criteria for Decision-Making Capacity: Between Understanding and Evidencing a Choice. Journal of Law and Medicine. 2017; 24: 678-694.
Palmer BW, Harmell AL, Pinto L, Dunn LB, Kim SYH, Golshan S, Jeste DV. Determinants of Capacity to Consent to Research on Alzheimer’s disease. Clinical Gerontologist. 2017; 40: 24-34. doi: 10.1080/07317115.2016.1197352
Doernberg SN, Peteet JR, Kim SYH. Capacity Evaluations of Psychiatric Patients Requesting Assisted Death in the Netherlands. Psychosomatics. 2016. DOI: 10.1016/j.psym.2016.06.005.
Palmer BW, Ryan KA, Kim HM, Karlawish JH, Appelbaum PS, Kim SYH. Neuropsychological Correlates of Capacity Determinations in Alzheimer’s Disease: Implications for Assessment. Am J Geriatr Psych 2013; 21(4): 373-381. doi: 10.1097/JGP.0b013e3182423b88.
Peisah C, Vollmer-Conna U, Kim SYH. Capacity to consent to research: the evolution and current concepts. Asia-Pacific Psychiatry 2012; 4: 219-227.
Katona C, Chiu E, Adelman S, Baloyannis S, Camus V, Firmino H, Gove D, Ghebrehiwet T, Graham N, Icelli I, Ihl R, Kalasic A, Leszek L, Kim S, de M. Lima C, Peisah C, Tataru N, Warner J. World Psychiatric Association Section of Old Age Psychiatry Consensus Conference on Ethics and Capacity in Old People with Mental Disorders. Int J Geriatr Psychiatry 2009; 24(12):1319-1324.
Karlawish J.H., Kim SYH, Knopman D., VanDyck, C., James, B., Marson D. Interpreting the clinical significance of capacity scores for informed consent in AD clinical trials. Am J Geriatr Psychiatry 2008; 16:568-574.
Kim SYH, Appelbaum PS, Swan J, Stroup TS, McEvoy JP, Goff DC, Jeste DV, Lamberti JS, Leibovici A, and Caine ED. Determining When Impairment Constitutes Incapacity for Informed Consent in Schizophrenia Research. British Journal of Psychiatry 2007; 191(1):38-43.
Kim SYH, Appelbaum PS. The Capacity to Appoint a Proxy and the Possibility of Concurrent Proxy Directives. Behavioral Sciences & the Law 2006; 24(4):469-478.
Kim SYH, Caine ED, Swan JG, Appelbaum PS. Do clinicians follow a risk-sensitive model of capacity determination? An experimental video survey. Psychosomatics 2006; 47: 325-329.
Kim SYH. When does decisional impairment become decisional incompetence? Ethical and methodological issues in capacity research in schizophrenia. Schizophrenia Bulletin 2006; 32(1): 92-97.
Stroup S, Appelbaum P, Swartz M, Patel M, Davis S, Jeste D, Kim S, Keefe R, Manschreck T, McEvoy J, Lieberman J. Decision-making capacity for research participation among individuals in the CATIE schizophrenia trial. Schizophrenia Research 2005; 80(1): 1-8.
Kim SYH, Caine ED. Utility and Limits of the Mini-Mental State Examination when Evaluating Consent Capacity in Alzheimer’s Disease. Psychiatric Services 2002; 53: 1322-1324
Kim SYH, Karlawish JHT, Caine ED. Current State of Research on Decision-Making Competence of Cognitively Impaired Elderly. Am J Geriatr Psychiatry 2002; 10: 151-165
If a person is too decisionally impaired to make his or her own decisions (e.g., medical decisions at the end of life), who should make them and how should they make those decisions? This is a perennially controversial topic in modern medical ethics. In fact, some (for example, the Committee on Rights of Persons with Disabilities at the UN) have stated that others should never make decisions for a person since a person always retains legal capacity regardless of whatever impairments they may have. (For an excellent discussion of CRPD and capacity, see Scholten & Gather.)
Assuming that surrogate decisions must be made, what is the best way to do it? The conventional view is that there is a target (i.e., there is one correct answer to 'what would the person have done now?') that we either hit or miss. I think this is one of those empirical assumptions that reflect a philosophical framework more than the reality of who we are as persons. Such a framework probably has impeded progress on the topic, and I think there is a lot more normative work that still needs to be done.
In my work, I have tried to study whether the needed empirical assumptions of the conventional view actually hold.
NB: Some of my work on surrogate consent for research uses democratic deliberation methods; those can be found on the democratic deliberation and bioethics page.
Kim, S. Y. H., & 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
Craigie J, Bach M, Gurbai S, Kanter A., Kim SYH, Lewis O, Morgan G. Legal capacity, mental capacity and supported decision-making: Report from a panel event. International Journal of Law and Psychiatry. 2018. doi:https://doi.org/10.1016/j.ijlp.2018.09.006
Kim SYH. Improving Medical Decisions for Incapacitated Persons: Does Focusing on ‘Accurate Predictions’ Lead to an Inaccurate Picture? Journal of Medicine and Philosophy 2014; 10.1093/jmp/jhu010/
De Vries R, Ryan K, Stanczyk A, Appelbaum PS, Damschroder L, Knopman D, Kim SYH. Public’s Approach to Surrogate Consent for Dementia Research: Cautious Pragmatism. Am J Geriatr Psych 2013; 21(4): 364-372. doi:10.1097/JGP.0b013e3182423be6.
Kim SYH, Kim HM, Ryan KA, Appelbaum PS, Knopman DS, Damschroder L, De Vries R. How important is ‘accuracy’ of surrogate decision-making for research participation? PLoS ONE 2013;8:e54790
Bravo G, Kim SYH, Dubois MF, Cohen CA, Wildeman SM, Graham JE. Surrogate consent for dementia research: factors influencing five stakeholder groups from the SCORES study. IRB: Ethics & Human Research. 2013;35:1-11.
Bravo G, Wildeman SM, Dubois MF, Kim SYH, Cohen CA, Graham JE, Painter K. Substitute consent practices in the face of uncertainty: A survey of Canadian researchers in aging. International Psychogeriatrics 2013: 1-10.
Silveira M, Kim SYH, Langa KM. Advance Directives and Outcomes of Surrogate Decision Making before Death. N Engl J Med 2010; 362:1211-1218.
Kim SYH, Kim HM, Langa KM, Karlawish JHT, Knopman DS, Appelbaum PS. Surrogate Consent for Dementia Research: A National Survey of Older Americans. Neurology 2009; 72: 149-155.
Saks ER, Dunn LB, Wimer J, Gonzales M, Kim SYH. Proxy consent to research: the legal landscape. Yale Journal of Health Policy, Law, and Ethics 2008; 8(1): 37-78.
Karlawish JHT, Kim SYH, Knopman D, van Dyck CH, James B, and Marson D. The views of Alzheimer disease patients and their study partners on proxy consent for clinical trial enrollment. Am J Geriatr Psychiatry 2008;16(3): 240-247.
Kim SYH, Kim HM, McCallum C, Tariot PN. What do people at risk for Alzheimer’s disease think about surrogate consent for research? Neurology 2005; 65:1395-1401.
Kim SYH, Appelbaum PS, Jeste DV, Olin J. Proxy and Surrogate Consent in Geriatric Neuropsychiatric Research: Update and Recommendations. Am J Psychiatry 2004; 161(5):797-806