Informed consent is the single most important concept for understanding decision-making capacity. There is a steady pull in the clinical world to transform capacity into a technical concept that can be tested objectively, usually by calling for a psychiatric consult. This is a classic example of medicalization. In this article I argue that is a mistake, not just unnecessary but wrong, and explain how to normalize capacity assessment.
Returning the locus of capacity assessment to the attending, the primary care doctor, and even to ethics consultation in today's environment will require a substantial effort to undo a strong but illusory impression of capacity assessment. Hospital attorneys as well as clinical ethicists with a sophisticated understanding of health law can be in the vanguard of this reorientation.
Get full access to this article
View all access options for this article.
References
1.
The most influential work in the field, and most responsible for the confusion of capacity and competence is T.Grisso and P. S.Appelbaum, Assessing Competence to Consent to Treatment (New York: Oxford Press, 1998). For example, they say on p. 17 “our description of competence is guided by the law…” … followed by the claim disputed in this article that “fortunately the legal perspective is consistent with an ethical analysis of competence as well.” One could eliminate most of the confusion simply by rejecting any use of the phrase “competence to consent” and substituting “capacity to consent.” While this error usually traces to the works of those two authors, the confusion began before that. For example in the very important book R. R. Faden and T. L. Beauchamp, A History and Theory of Informed Consent (New York: Oxford, 1986), there is a sophisticated analysis of the principle of Autonomy in terms of informed consent and authenticity (see pp. 237-8), but alas they too sometimes muddy the waters by referring to “competence” rather than “capacity.” However the overall concern in their book is correct, to avoid raising the bar for when patients have the right to make their own medical decisions, in order to preserve their freedom and control over their own life. For a more detailed discussion of the role of authenticity, and how it can replace reasoning as a condition of consent: J. P. Spike, “Personal Identity Is the Philosophical Penumbra in Which Capacity Must be Assessed,” Ethics, Medicine and Public Health 2, no. 4 (2016): 540-549.
2.
J. P.Spike, “Personhood and a Paradox about Capacity,” in D. C.Thomasma, D. N.Weisstub and C.Herve, eds., Personhood and Health Care (Dordrecht, The Netherlands; Norwell, MA: Kluwer Academic Publishers, 2001): 243-253.
3.
T. N.Tombaugh and N. J.McIntyre, “The Mini-Mental State Examination: A Comprehensive Review,”Journal of the American Geriatric Society40, no. 9 (1992): 922-935, available at <http://www-ncbi-nlm-nih-gov.ezproxyhost.library.tmc.edu/pubmed/1512391> (last visited February 7, 2017); M. F. Folstein, S. E. Folstein, and P. R. McHugh, “Mini-Mental State: A Practical Method for Grading the Cognitive State of Patients for the Clinician,” Journal of Psychiatric Research 12, no. 3 (1975): 189-198, available at <https://www.ncbi.nlm.nih.gov/pubmed/1202204> (last visited February 7, 2017).
4.
B.Lo, Resolving Ethical Dilemmas: A Guide for Clinicians, 5th ed. (Philadelphia, Pa: Lippincott Williams & Wilkins; 2015): at 78-82; L. Ganzini, L. Volicer, W, A, Nelson, E. Fox, and A. R. Derse, “Ten Myths about Decision-Making Capacity,” Journal of the American Medical Directors Association 5, no. 4 (2004): 263-267.
5.
A. M.Capron, “Not Taking ‘Yes’ for an Answer,”Journal of Clinical Ethics26, no. 2 (2015): 104-107.
6.
J. P.Spike, “Capacity Is Not in Your Head: Why It Can Be a Mistake to Request a Psychiatric Consultation to Determine Capacity,” in D.C.Thomasma and D.N.Weisstub, eds., The Variables of Moral Capacity (Dordrecht, The Netherlands; Norwell, MA: Kluwer Academic Publishers, 2004): at 113-119.
7.
The problem of other minds is a classic issue in philosophy of mind, with origins in Descartes' Meditations I, often called “the evil demon” argument for skepticism, and brilliantly updated in the 20th century by Hilary Putnam as the “the brain in a vat” problem. It is related to the problem of private language as well, and the solution to both problems is related; we think in language, and language is a social and physical-causal phenomenon (as meanings of many words, especially scientific terms, are set by the facts of the physical environment we live in and to which our words refer). Some classic readings on the topic of other minds from the Anglo-American analytic tradition: C.McGinn, “What is the Problem of Other Minds?”Proceedings of the Aristotelian Society, Supplementary vol. 58 (1984): 119–37; J. S. Mill, An Examination of Sir William Hamilton's Philosophy (London: Longmans, 1865); T. Nagel, The View from Nowhere (Oxford: Oxford University Press, 1986); H. Putnam, Reason, Truth and History (New York: Cambridge University Press, 1981); G. Ryle, The Concept of Mind (London: Hutchinson's University Library, 1949); E. Sober, “Evolution and the Problem of Other Minds,” Journal of Philosophy 97 (2000): 365–387; J. Wisdom, Other Minds, 2nd ed. (Oxford: Blackwell, 1968); and from the European Continental tradition, one should also include M. Merleau-Ponty, C. Smith (trans.), Phenomenology of Perception (New York: Rout-ledge, 1962).
8.
R. J.Leo, “Competency and the Capacity to Make Treatment Decisions: A Primer for Primary Care Physicians,”Primary Care Companion to The Journal of Clinical Psychiatry1, no. 5 (1999): 131-141, available at <https://www.ncbi.nlm.nih.gov/pmc/articles/PMC181079/> (last visited February 10, 2017).
9.
Physicians are professionals with many responsibilities to their patients and society, while patients are engaged in the system only for their own benefit. See, for one example that is widely used in medical education in the US and Europe: “The Physicians Charter: ABIM-ACP-EFIM,”Annals Internal Medicine136, no. 3 (2002): 243-246.
10.
T.Grisso and P. S.Appelbaum, Assessing Competence to Consent to Treatment: A Guide for Physicians and Other Health Professionals (New York: Oxford University Press, 1998);. P. S. Appelbaum, “Assessment of Patients' Competence to Consent to Treatment,” The New England Journal of Medicine 357, no. 18 (2007): 1834-40; J. W. Berg, P. S. Appelbaum and T. Grisso, “Constructing Competence: Formulating Standards of Legal Competence to Make Medical Decisions,” Rutgers Law Review 48, no. 2 (1996): 345-96; A. R. Jonsen, M. Siegler, and W. Winslade, Clinical Ethics, 8th ed. (New York: Lange, 2015). See sections 2.2.1 and 2.2.2 where they simply repeat the formula from Appelbaum and Grisso. A better job than in any of the works by or influenced by Appelbaum and Grisso, and more aware of the importance of preserving patient Autonomy and patient's rights (and less paternalistic throughout) is the text: B. Lo, Resolving Ethical Dilemmas: A Guide for Clinicians, 4th ed. (New York: Lippencott, 2009).
11.
In private correspondence. Permission granted from the author.
12.
J. P.Spike, “Assessment of Decision-Making Capacity,” in C.Arenson, J.Busby-Whitehead, K.Brummel-Smith, J. G.O'Brien, M. H.Palmer and W.Reichel, eds., Reichel's Care of the Elderly: Clinical Aspects of Aging, 6th ed. (New York: Cambridge University Press, 2009): at 487-94.
13.
S.Quine and S.Morrell, “Fear of Loss of Independence and Nursing Home Admission in Older Australians,”Health and Social Care in the Community15, no. 3 (2007): 212-220.
14.
See the National Conference of State Legislatures site, www.ncsl.org, to find different variations in state laws.
15.
The quote is attributed to Darold Treffert, former Director of the Winnebago Mental Health Institute. For examples of when psychiatric patients deserve protection from their own stated preferences, see M.Tunzi and J. P.Spike, “Assessing Capacity in Psychiatric Patients with Acute Medical Illness Who Refuse Care,”The Primary Care Companion for CNS Disorders16, no. 6 (2014), available at <http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4374813/> (last visited February 10, 2017).
16.
H. E.Bronheim, G.Fulop, E. J.Kunkel, P. R.Muskin, B. A.Schindler, and W. R.Yates, et al., “The Academy of Psychosomatic Medicine Practice Guidelines for Psychiatric Consultation in the General Medical Setting,”Psychosomatics39, no. 4 (1998): 8, available at <https://www.ncbi.nlm.nih.gov/pubmed/9691717> (last visited February 10, 2017).
17.
Nearly half of all Americans die in a hospital or nursing home. 25.5% die at home according to CDC: Centers for Disease Control and Prevention, National Center for Health Statistics, Underlying Cause of Death 1999-2014 on CDC WONDER Online Database, released 2015. Data are from the Multiple Cause of Death Files, 1999-2014, as compiled from data provided by the 57 vital statistics jurisdictions through the Vital Statistics Cooperative Program, available at <http://wonder.cdc.gov/ucd-icd10.html> (last visited February 10, 2017); I. J.Higginson and G.Sen-Gupta, “Place of Care in Advanced Cancer: A Qualitative Systematic Literature Review of Patient Preferences,”Journal of Palliatative Medicine3, no. 3 (2000): 287-300. Also see the relevant stats here: <http://www.pbs.org/wgbh/pages/frontline/facing-death/facts-and-figures/> (last visited February 10, 2017).
American Academy of Pediatrics Committee on Bioethics, “Guidelines on Forgoing Life-Sustaining Medical Treatment,”Pediatrics93, no. 3 (1994): 532-6.
20.
J. P.Spike and J.Rousso, “Starchild Cherrix: Negotiating about Religious Beliefs and Complementary and Alternative Medicine,”MedEdPortal5 (2009): 3164; J. P. Spike, “When Ethics Consultation and Courts Collide: A Case of Compelled Treatment of a Mature Minor,” Narrative Inquiry in Bioethics 1, no. 2 (2011): 123-31.
21.
The similarity is not a coincidence. Almost every state passed a law that was modelled on this model uniform legislation, though each one was free to make small changes, and did. National Conference of Commissioners on Uniform State Laws, 1993, Uniform Health-Care Decisions Act (UHCDA).
22.
N.Kontos, O.Freudenreich, and J.Querques, “Beyond Capacity: Identifying Ethical Dilemmas Underlying Capacity Evaluation Requests,”Psychosomatics54, no. 2 (2013): 103-110; H. Hermann, M. Trachsel, and N. Biller-Andorno, “Physicians' Personal Values in Determining Medical Decision-Making Capacity: A Survey Study,” Journal of Medical Ethics 41, no. 9 (2015): 739-744.
23.
M.Perl and E. E.Shelp, “Psychiatric Consultation Masking Moral Dilemmas in Medicine,”New England Journal of Medicine307 (1982): 618-620.
