1. Capacity for Decision-Making Erika Manu MD Clinical Assistant Professor Division of Geriatric and Palliative Medicine, Department of Internal Medicine University of Michigan Tracy Wharton PhD, LCSW Assistant Professor School of Social work, College of Health and Public Affairs University of Central Florida August, 2014

2. I have no outside relationships with industry Currently, I do not serve as the PI on any industry supported research projects Financial Disclosure

3. Learning objectives Discuss elements of decision making capacity evaluation and review common pitfalls Discuss principles of providing effective consultative services

4. The Doctrine of Informed Consent The right of all people to be fully informed before consenting Autonomy of individuals Free of coercion and properly informed Nuremberg Code: “the person involved…should be so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, overreaching, or other ulterior form of constraint or coercion …” This issue touches on law, ethics, philosophy, human rights, social justice, and history.

5. “Competence” and “Capacity” “… we talk of ‘decision-making capacities’ when we refer to the abilities related to decisions. We use the term “competence,” however, to denote the state in which a patient's decision-making capacities are sufficiently intact for their decisions to be honored (and conversely for incompetence) regardless of who makes the determination.” (Grisso & Appelbaum 1998, p.11) Decision making capacity is a clinical assessment of a patient's ability to make specific health care decisions, whereas competency is a legal determination of the patient's ability to make his or her own decisions in general. (Charland, 2004)

6. Case study 74 y/o widow w dementia, admitted for CHF/angina Coronary angiography is recommended by her physician Not oriented to time at baseline but recognizes her PCP. Misses PCP appointments. Mentation usually gets worse while hospitalized A nephew supports her IADL’s in the community. Per his report she still enjoys watching TV, attending activities at the senior center, sitting in the park When asked about her wishes she says she wants to go home She agrees to have the catheterization but on the day of the procedure she changes her mind Her nephew agrees she would benefit from the procedure The patient has been adverse to medical interventions all her life Psychiatry is consulted but the patient refuses to talk to them

7. What’s the decision that needs to be made in this example?

8. Definition of capacity The ability to understand the consequences of making a decision in a given domain, and to appreciate the concepts of what is being asked. Having understanding and appreciation of the decision at hand, the ability to reason regarding consequences and alternatives, understanding that the choice is yours to make, and ability to understand your values as they relate to the decision. Decision-making capacity is decision relative (Buchanan & Brock, 1989)

9. Clinical standards for decision making capacity The patient makes and communicates choices The patient understands the following information and appreciates its relevance to the situation: The medical situation and prognosis The nature of the recommended care Alternatives to care The risks, benefits and consequences of each alternative Decisions are consistent with the patient’s values and goals Decisions do not results from delusions The patient uses reasoning to make a choice

10. Domains of capacity Medical (consenting and/or refusing) Financial Self-care/living situation Legal (choosing a DPOA, for example) Other (driving, research)

11. How is capacity determined? Remember- capacity is about the domain in which the decision must be made, not overall cognitive capacity. Screening tools such as MMSE, MOCA, TICS, etc. are NOT adequate for capacity determinations. Capacity does not ( always) have to be determined by a MH professional; often best assessed by primary contact over time.

12. Helpful Questions in Assessing Decision Making Capacity Does the patient understand the disclosed information? –“Tell me what you believe is wrong with your health right now? –“What is…likely to do for you? Does the patient appreciate the consequences of his or her choices? –“What do you believe it will happen to you if you do not have…? –“I’ve described the possible risks and benefits of… If these benefits or risks occurred, then how would your everyday activities be affected? Does the patient use reasoning to make a choice? –“Tell me how you reached your decision?” –“Help me understand how you decided to refuse…?” –“Tell me what makes …seem worse then the alternatives?

13. Date of download: 8/5/2014 Copyright © 2014 American Medical Association. All rights reserved. From: Finances in the Older Patient With Cognitive Impairment: “He Didn't Want Me to Take Over” JAMA. 2011;305(7):698-706. doi:10.1001/jama.2011.164

14. An Integrative Conceptual Model for Consent Capacity Moye et al. 2006

15. 10 Myths related to decision-making capacity (VA Ethics Committee, 2004) Myth 1. Decision-making capacity and legal competency are the same. Myth 2. Lack of decision-making capacity can be presumed when patients go against medical advice. Myth 3. There is no need to assess decision-making capacity unless patients go against medical advice. Myth 4. Decision-making capacity is an “all or nothing” phenomenon. Myth 5. Cognitive impairment equals lack of decision-making capacity. Myth 6. Lack of decision-making capacity is a permanent condition. Myth 7. Patients who have not been given relevant and consistent information about their treatment lack decision-making capacity. Myth 8. Patients with certain psychiatric disorders lack decision-making capacity. Myth 9. Patients who are involuntarily committed lack decision-making capacity. Myth 10. Only mental health experts can assess decision-making capacity.

16. Issues to consider… Depression may compromise the ability to make decision, although reasoning may be intact Delirium or psychotic states may have acute phases and ‘absent’ phases and capacity may differ between these states Generally, a ‘normative’ principle is applied: would this person normally be able to make this decision, and how close is the current state of cognition relative to this issue to that normative state?

17. Proxies, DPOAs, & Guardians Health care proxy = in many states, this would require a DPOA; person who is appointed by you to make health care decisions. –Can ONLY make health-care decisions DPOA = Durable Power of Attorney; this is a legal document designating the person whom you appoint to manage designated decisions. –May include health-care, financial, mental health, or all decisions on your behalf Guardian = a person appointed by a court to make decisions for you.

18. When there is no Proxy/DPOA… Legal spouse (by state law, unless at a VA) Adult child (age determined by state law) Parent Sibling When there is a question about a decision-maker, we are never the ones to make that choice.

19. A caution… Our own values, biases, and perceptions filter our judgment. Check yourself: Are you reacting to a person’s physical presentation (fat, thin, poor hygiene, bad teeth, etc.)? Are you reacting to a person’s situation (homeless, recovering addict, prostitute, etc.)? Are you reacting to your own personal values about a procedure? Are you questioning capacity because you disagree with the patient? (Adults in the US who have decisional capacity have the right to make really stupid decisions.)

20. References Beauchamp, T., and Childress, J., 2001. Principles of Biomedical Ethics, 5 th ed. New York: Oxford University Press. Buchanan, Alec, 2004. “Mental Capacity, Legal Competence and Consent,” Journal of the Royal Society of Medicine, 920: 415–420. Buchanan, Alan E., and Dan W. Brock, 1989. Deciding for Others: The Ethics of Surrogate Decision Making, Cambridge: Cambridge University Press.Ganzini et al., 2004 Faden, Ruth, and Tom, Beauchamp, 1986. A Theory and History of Informed Consent, New York: Oxford University Press. Grisso, Tom and Paul A. Appelbaum, 1998. The Assessment of Decision-Making Capacity: A Guide for Physicians and Other Health Professionals, Oxford: Oxford University Press. Charland, Louis, "Decision-Making Capacity", The Stanford Encyclopedia of Philosophy (Fall 2004 Edition), Edward N. Zalta (ed). plato.stanford.edu/archives/fall2004/entries/decision-capacity U.S.A. vs. Karl Brandt et al. in Trials of War Criminals Before the Nuremberg Military Tribunals Under Control Council Law, Volume 2, Number 10, Washington, D.C.: U.S. Government Printing Office, 1949. Ganzini, Volicer, Nelson, Fox, Derse. Ten Myths about Decision-making Capacity. JAMDA, May/June 2005.

21. Ten Commandments for Effective Consultation Identify the question Identify the urgency Gather your own primary data Communicate briefly Make specific recommendations Provide contingency plans Understand your role Offer education tactfully Communicate directly- talk is cheap..and effective Provide follow-up ( Goldman, Lee, Rudd, 1983).

22. Questions ? Thank you!