Assessing Cognition and Health Care Decision Making Capacity University of Utah Center on Aging FUNDAMENTALS

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1 Assessing Cognition and Health Care Decision Making Capacity University of Utah Center on Aging Maureen Henry Executive Director Utah Commission on Aging Karen L. Miller, M.D. Associate Professor Department of Obstetrics and Gynecology FUNDAMENTALS Older persons are at risk for incorrect assumptions concerning decision making capacity: some physicians assume capacity, without limit; others incorrectly assume a lack of capacity because a patient is old or has been diagnosed with a condition associated with incapacity. A physician caring for this age group needs to be able to screen for impairment in cognition and in health care decision making capacity. Capacity to make one s own health care decisions is defined poorly in medicine and law. However, there are relatively straightforward ways to understand and address capacity in clinical care. Health care decision making capacity is not dichotomous (yes/no). A patient may be able to designate a surrogate, but not to fully understand the risks and benefits of alternate treatments. The law can offer protection to physicians, enabling quality patient care, and your health care lawyer can be your friend. States laws differ, and an attorney can help you understand the nuances of your state s laws. Mediation and clarification can avoid legal conflicts that may arise in the care of older persons.

2 CLINICAL QUESTIONS What if my patient fails a cognitive screen? An abnormal cognitive screen triggers consideration of the need for further evaluation or a change in preoperative or postoperative management, but this may not mean that the patient lacks health care decision-making capacity. A screen that shows diminished cognitive capacity does not prove she has poor decision-making capacity, and does not identify the specific aspect(s) of capacity that may be affected. Then what do I do? Ask for full cognitive evaluation and determination of capacity to consent, or go ahead with the surgery? Consider if there is a reason for full psychiatric or neuropsychological evaluation. Typically, if a surrogate decision maker is available and is in agreement with medically indicated care and the patient s wishes, then you may proceed with surgery or other care as indicated. Both should sign the consent form. If, however, the patient is seeking treatment that is unusual, extreme, or medically questionable, you should inquire further. What about signing the consent? It is a legal document. Can a patient with some cognitive impairment legally sign? The law presumes individual autonomy/ capacity. The patient can decide her own care until this right is legally removed. If both the patient and her legal surrogate agree, and both sign the consent, then you have met your obligation to obtain informed consent from a person with capacity. What if I believe she truly lacks adequate capacity to consent to treatment, no appropriate surrogate is available, and the decision whether or not to treat has serious implications? Refer her for an assessment, which might be done by a neurologist, psychiatrist, neuro psychologist, geriatrician, or other health care professional. What if there is not time for a consultation? Every state has an emergency exception to the informed consent requirement that allows you to treat if serious harm is imminent. Check with legal counsel to understand the scope and use of the emergency exception in your state.

3 What if there is disagreement between the patient and surrogate? The patient has the constitutional right to make her own health care decisions unless this is removed through a legal process, usually guardianship. Unless treatment is emergent, you should consider her ability to understand, appreciate, and reasonably assess her condition and proposed treatments. If she is able to articulate the problem and anticipated treatment results, and if she is able to rationally reach a conclusion, you can presume she has capacity. If that is the case, the surrogate lacks any legal authority to disagree with the patient s decision or to speak on behalf of the surrogate. Mediation can be helpful in resolving family disputes, but it should not be used to overpower or manipulate the patient. The surgeon may be a skilled mediator, or may wish to engage a social worker or other professional in the event of conflict. If the patient lacks capacity to make health care decisions, refuses to involve a surrogate, and refuses medically indicated care, a legal guardianship may be necessary. In contrast to an appointed agent, a guardian would typically have the explicit legal authority to override the patient s health care instructions. What if the children disagree with each other about the older person s care? If multiple children are serving as surrogate jointly and conflict arises, begin with an attempt to mediate the conflict or involve social work or a skilled mediator to resolve the conflict. If the conflict is irreconcilable, consult legal counsel about what state law says about how decisions are made when more than one surrogate is serving. To the greatest extent possible, continue to keep the patient s preferences as the focus, and involve the patient in the discussion. What if I believe she is refusing care because of acutely altered cognition postoperatively, i.e., delirium? If a diagnostic or therapeutic procedure is indicated to avoid risk of serious harm, consult legal counsel about use of the emergency exception rule. Consider whether her consent to treatment extended to postoperative complications.

4 PRACTICE TIPS Surrogate decision making Framing the Question Keep the focus on the patient s preferences, even if there seems to be cognitive impairment; you may need to remind yourself and the surrogate that the patient s preferences are key If patient preferences seem odd or differ from her historical choices, ask: o Is there a rational explanation? o Are current preferences consistent over time (e.g. at initial consult and follow-up visit)? Even an incapacitated patient can participate in the discussion o Patient can often articulate goals of care, even if she is not able to connect her goals to specific treatment choices If patient and surrogate have discrepant preferences, consider the surrogate s motives Physician can and should reject decisions made for the benefit of the surrogate. Some physicians erroneously believe that with any cognitive impairment, they must follow the surrogate s directions Potential Benefits of Surrogate Involvement Increase the amount of information available to inform the decision Improve the quality of discussion of the proposed treatment Improve communication between provider and patient Potential Surrogates The legal authority for surrogate decision makers and the hierarchy of who can serve, may be found in your state s medical malpractice statute, health care directive or health care power of attorney statutes, or elsewhere in statute or case law. Surrogates include: Court-appointed guardian: Unusual, ask for documentation that explains the scope of the guardian s power. Agent appointed by patient in an advance directive or health care power of attorney document: Common, but ask to see the document to see the scope of power granted to the surrogate Default surrogate, aka next-of-kin, family: Who can serve is defined by state law; no national standard governs the hierarchy of family; no national standard controls scope of a surrogate s power

5 Friend/distant relative: State laws may or may not explicitly permit a friend/non-marital cohabitant/neighbor to serve as a legal surrogate unless the person is also an appointed agent, but these individuals can participate in the discussion to improve the patient s ability to communicate a decision Power of Surrogates Every time you ask the surrogate to consent on behalf of a patient, you are potentially depriving the patient of the constitutional right to make health care decisions. The power of a surrogate is defined in state law establishing default surrogates, and in: Court Order/Letters of Guardianship defining scope of a guardian s power Power of Attorney for Health Care granting a health care agent the power to make surrogate decisions Difference between Agent appointed through Power of Attorney and Court- Appointed Guardian A power of attorney appointing a health care agent creates an individual who has the same powers as the patient, but does not typically grant the agent the power to take away the patient s rights to make decisions. In contrast, a guardianship is a court action in which a judge examines the evidence that an individual lacks the ability to perform specific functions (usually these functions include making health care decisions and managing financial affairs). If the judge finds that the legal standard has been met, the judge may take rights away from an individual and give those rights to another person who can then act on behalf of the individual. Limitations The following points are inherent in good medical practice. The law in some states is unclear, but following good medical practice typically provides the best legal protection. Surrogates should not be used to override, undermine, or manipulate patient s preferences A surrogate should not be used when the patient objects to the involvement of the surrogate even if the patient s capacity is impaired, see guardianship above

6 Legal options Declaratory judgment seeks court approval for a specific medical intervention or course of treatment o Patient, family, the state, or provider could initiate legal action Contact your state s Aging and Adult Services or Legal Services to determine what help is available Contact an attorney to initiate legal action Guardianship o Typically the intended guardian would initiate legal action; some states allow a provider to initiate action o If no family or friend is available to serve as guardian, some states have public guardians who can serve o Private guardians exist in most states; quality varies, and the patient must have assets to pay for the guardian Risk of Harm Although the law does not exempt small procedures such as phlebotomy or catheterizations for a urine specimen from the need for informed consent, a physician is unlikely to suffer legal consequences for doing necessary, very lowrisk procedures in a patient with impaired capacity, as long as the patient agrees.

7 SCREENING RECOMMENDATIONS FOR ALL PATIENTS OVER AGE 65 OR 70 Hearing Vision Can you hear me OK? Are you able to read this OK? (Newsprint or something in 12 point font) You may want her to read out loud. Be sensitive that some adults hide illiteracy. COGNITION SCREENING: MANY DIFFERENT OPTIONS I. INFORMAL A. Give instructions and observe the patient. 1. Go down the hallway to your left and enter the third door on your right. B. Ask questions with verifiable information 1. Address, date of birth 2. Things you may know: What part of town is that in? How long did it take you to get here today? Are there any churches/parks near your home? Notice any vagueness in answers. II. FORMAL A. 3 WORD RECALL TEST 1. Say three words, have her repeat them until she is comfortable. a. Some recommend nouns, some recommend two-syllable words. 2. Delay at least 1 minute, up to about 5 minutes, preferably with intervening distraction. 3. Ask her to repeat the words. 4. Pass/fail criteria are not well-defined. Passing usually requires recall of 3 words, although some publications accept recall of 2 words. B. WORD LIST GENERATION 1. Name as many items in a broad semantic category as one can in 60 seconds a. E.g., animals, fruits, or vegetables. 2. Pass = minimum of 20. C. CLOCK DRAWING TEST 1. Validated across a variety of educational and cultural backgrounds a. Useful if language barrier 2. Hand the patient a blank piece of paper, or one with a large blank circle 3. Ask her to draw the face of a clock with all the numbers. 4. After she completes this, ask her to put the hands at 10 til Do not prompt her, although you may repeat instructions. 6. Judge the CDT based on gestalt of normal or abnormal. a. Are all the numbers in the correct quadrant? b. Is the short hand pointing directly toward 11? (incorrect) D. MINI-COG 1. Combination of 3 word recall with clock drawing test a. She must recall the 3 words after performing the clock drawing test. b. Pass = all 3 words correct, or 1-2 words correct with normal CDT

8 Resources for Older Americans Utah s Advance Health Care Directive Act effective January 1, 2008, removed barriers to advance care planning and surrogate decision-making while clarifying rights of patients with diminished capacity. The American Bar Association Commission on Law & Aging provides a wealth of information on law and aging issues. The Resources link on its Web site connects you to legal help in every state The ElderCare Locator, sponsored by the Administration on Aging of the U.S. Department of Health and Human Services, connects you to aging network services, including legal services, in your community. The National Academy of Elder Law Attorneys provides a consumer directory. You can search for knowledgeable lawyers in any part of the country by zip code or town name. The National Association of Area Agencies on Aging provides information about national programs and links to resources within your own community.

9 Suggested Reading Henry, Maureen. Assessing decision-making capacity in elderly patients: the gynecologist's role. Clinical Obstetrics and Gynecology 2007;50(3): Appelbaum, Paul S. Assessment of patients' competence to consent to treatment. New England Journal of Medicine 2007;357: Moye, Jennifer and Marson, Daniel C. Assessment of decision-making capacity in older adults: an emerging area of practice and research. Journal of Gerontology: Psychological Sciences 2007;62B:P3-P11.

10 Health Care Decision Making Capacity Decision Tree Can the patient communicate? Does patient understand and appreciate nature, extent, or probable consequences of health care? Is impairment reversible? Is the patient able to make a rational evaluation of burdens, risks, benefits of treatment? Is impairment reversible? Treat then back to top. Likely capacity impairment Patient can give informed consent. Is impairment reversible? Treat then back to top. Likely capacity impairment Treat then back to top. Likely capacity impairment Surrogate available and patient willing to involve surrogate? Use surrogate in shared decision making process; surrogate becomes legal decision maker with involvement from patient when possible* Treat if emergency;* if not an emergency, refer for capacity assessment; if patient lacks capacity, consult with ethics committee, risk management, or legal counsel* Risk of serious harm?* Refer for capacity assessment; if assessment shows that patient lacks capacity, consult ethics committee, risk management, or legal counsel about how to proceed* * See Practice Tips 2008 Karen Miller, MD, Maureen Henry, JD