Myths & Pitfalls About Decisional Capacity for Family Medicine

1. Myths & Pitfalls About Decisional Capacity for Family Medicine Cynthia M.A. Geppert, MD, DPS Chief Consultation-Liaison and Ethics New Mexico Veterans Affairs Health Care System Professor of Psychiatry and Director of Ethics Education UNMSOM

2. Objectives • At the end of this presentation the learner will be able to: • Recognize common myths about decisional capacity. • List the main components of decisional capacity. • Describe a method of assessing decisional capacity

3. Ten Myths about Decision Making Capacity • (1) decision-making capacity and competency are the same; • (2) lack of decision-making capacity can be presumed when patients go against medical advice; • (3) there is no need to assess decision-making capacity unless patients go against medical advice; • (4) decision-making capacity is an "all or nothing" phenomenon; • (5) cognitive impairment equals lack of decision-making capacity; • Ganzini L, et al. J Am Med Dir Assoc. 2005 May-Jun;6(3 Suppl):S100-4.

4. More Myths • 6) lack of decision-making capacity is a permanent condition; • (7) patients who have not been given relevant and consistent information about their treatment lack decision-making capacity; • (8) all patients with certain psychiatric disorders lack decision-making capacity; • (9) patients who are involuntarily committed lack decision-making capacity; and • (10) only mental health experts can assess decision-making capacity.

5. Requests for Capacity Evaluation • 100 consecutive consultation requests to an academic psychosomatic service. • Approximately same number of requests for capacity to consent to treatment/procedure, capacity to refuse treatment/procedure, capacity to leave AMA, capacity for discharge. • MMSE was 100% sensitive and 69% specific for score below 21; 83% & 90% below 24.

6. More results • Using MMSE alone resulted in errors in capacity determinations. • In 38/39 cases primary team and consultant agreed on no capacity. • In 2/7 cases where consultant thought patient had capacity, team agreed. • Kahn DR. Int J Psychiatry Med. 2009;39(4):405-15.

7. Competence is Capacity • Competence is a legal term. Decisional capacity is a clinical designation. • Only a judge or other officer of the court can declared someone incompetent. • Generally the determination of competence is made on the basis of a clinician’s assessment of a patient’s decisional capacity.

8. Only a psychiatrist can determine decisional capacity • Any physician can make an assessment of a patient’s decisional capacity. • The primary physician is the first choice for making the assessment. • Psychiatrists and psychologists have no special legal standing to determine “competence.” • Mental health professionals should be consulted on the assessment of capacity only when there is evidence of a mental disorder.

9. How well do they do without us? • Study compared the MMSE, clinical impression, and expert assessment in 48 medical inpatients facing a major medical decision. • Clinical impression and MMSE were generally inaccurate in determining capacity • The psychiatrist found 23 of patients found “definitely capable” to be so. • Etchells E. et al. Psychosomatics. 1997 May-Jun;38(3):239-45.

10. A person who is psychotic or demented cannot be capable • Numerous studies demonstrate that psychiatric illness impacts aspects of decisional capacity. • Severely disorganized and demented patients will generally lack meaningful decisional capacity. • Moderately demented and actively psychotic patients are not a priori decisionally incapable. • Research shows that psychiatric patients can exercise decisional capacity and that their ability can be enhanced.

11. Incapacity of Psychiatric Patients to Make Medical Decisions • Systematic review of 43 studies using 23 different instruments found: • Incapacity was uncommon in healthy elders (2.6%) compared to medical inpatients (26%) • Clinicians accurately diagnosed incapacity in only 42% of patients without capacity. • MMSE scores of 20 increase likelihood of incapacity at scores of 20-24 MMSE neutral and scores above 24 significantly lowered likelihood of incapacity. • Only 3 instruments were BOTH easily performed and useful psychometrically, the ACE, Hopkins Competency Assessment and the Understanding Treatment Disclosure. ACE most validated. • Sessumus LL, et a. JAMA. 2011 Jul 27;306(4):420-7. doi: 10.1001/jama.2011.1023.

12. Decisional Capacity is an all or none phenomena • Decisional capacity is a spectrum of ability. • A patient may be unable to make financial decisions and be able to make medical ones. • Decisional capacity may fluctuate with the course of illness, treatment, nature of the decision and available social support. • Thus assessments of decisional capacity also need to be ongoing processes.

13. The components of decisional capacity • The ability to communicate. • A patient is able through verbal or non-verbal means to express his wishes. • Very sensitive to education, culture and language. • A patient with locked-in syndrome blinks his eyes in response to questions regarding continuation of life support.

14. The capacity to comprehend • The ability to understand the information presented such as the nature, risks,benefits, alternatives to and outcome of of a proposed intervention. • An anxious patient being consented for cardiac surgery is able to repeat the information the clinician explains in his own words.

15. The capacity to reason • The ability to rationally manipulate the facts given and arrive at a logical conclusion. The “Spock criterion.” • Appelbaum and Grisso (NEJM 1988; 319:1635-1638. • A schizophrenic patient with delusions of persecution is able to tell an investigator that he would rather receive a medication that is effective 85% of the time than one that works 15% of the time.

16. The capacity to Appreciate • The ability to make authentic choices which reflect one’s life history, culture, religion, values and prior significant decisions. • A 55 year-old woman who has been a devout Christian Scientist her entire life, refuses to see a doctor when she becomes jaundiced, vomits and has abdominal pain.

17. Domains of Voluntarism

18. Voluntarism: the forgotten capacity • The ability to make free and authentic choices without internal or external coercion which prevents or impedes the exercise of self-determination. • A veteran with post-traumatic stress disorder refuses a request from his primary care physician to participate in a research study.

19. Instruments to Evaluate Capacity • Study critically evaluated 23 capacity assessment instruments from the literature 1980-2004. • (Dunn LB, et al., Am J Psychiatry. 2006 Aug;163(8):1323-34.) • Parameters examined: • Format • Content • Administration features • Psychometric properties

20. Instrument results • 6 instruments dealt only with disclosing information. • 11 tested for core domains of understanding, choosing, reasoning and appreciation. • Instruments varied widely and all had limitations. • McArthur Competence Assessment Tool for Clinical Research and Treatment most empirical support.

21. Disorders with Partial, Fluctuating Capacity • Substance induced persisting dementia • Substance induced psychotic disorder • Schizophrenia (when acute) • Anorexia nervosa • Major psychotic depression • Bipolar (during episodes) • Severe OCD without insight

22. Ethics of Capacity Evaluation • Should give the patient the best chance of demonstrating capacity (e.g, examine in morning). • Should ensure capacity not reversible.(e.g., B12, delirium) • Should improve/internal capacity if possible (antipsychotics, abstinence) • Should bolster external capacity if feasible (social support, APS)

23. What to do when the patient lacks decisional capacity • Does the patient have an advance directive? • Did the patient appoint a proxy or surrogate decision maker? • If no AD or surrogate then the following order is utilized: spouse, adult child, parent, adult sibling, grandparent, friend? • Do they need a guardian?

24. Medical and Psychiatric Comorbidities • 2,500 consecutive consults analyzed for socioeconomic factors, medical and psychiatric diagnoses. • Hypothesis was psychotic disorders (25%) would most interfere with decisions. • Most common profile for consult: a male with substance use (37%) and cognitive disorder (54%). • Boettger S, et al. PalliatSupport Care. 2015 Oct;13(5):1275-81

25. Relationship of Diagnosis and Capacity • 64.7% of patients were found to lack capacity for the specific decision. • More than 50% had cognitive disorders as source of incapacity.Patients with mood disorders generally remained capable with psychotic disorders in between. • Team usually agreed with psychiatry.

26. Medical Conditions that can Influence Capacity • Pain • Fatigue • Medications • Intensive care environment • A 64 yo male with colon cancer is approached about participation in clinical research trial. He is heavily sedated with morphine and is status/post colectomy.

27. Neuropsychiatric Conditions that can Influence Capacity • Delirium • Dementia • Cognitive disorders • Developmental Disabilities • A 65 yo man with a brain abscess goes back and forth about consenting to neurosurgery. At points he is lucid and cooperative and others combative and distracted.

28. Psychiatric Conditions that can Influence Capacity • Substance Abuse • OCD • GAD • Panic • PTSD • A career Army sergeant is approached by the Chief of Cardiology and told he needs a cardiac catheterization. The patient says, “Yes Sir, whatever you say sir.

29. Psychiatric Conditions cont. • Depression • Schizophrenia • Manic Depression • Somatoform Disorders • Factitious Disorders • Personality Disorders • While manic, a 32 year old woman crashes her car and sustains facial trauma. Two weeks after the accident she is depressed and refuses reconstructive surgery, saying she must be punished for her sins.

30. Psychosocial Situations that can Influence Informed Consent • Bereavement • Abuse • Poverty • Criminal charges • Pregnancy • Minor children • 6 months after a 78 yo woman looses her husband of 54 years, she finds a lump in her breast. She keeps putting off making an appointment because she is overwhelmed with trying to cope without him.

31. Cultural Situations that can Influence Capacity • Religious preferences • Language barriers • Cultural attitudes • Education • A 45 yo father of 5 ruptures his spleen in a fall at home. He is a Jehovah’s Witness and refuses transfusion because of his beliefs, but will accept bloodless surgery.

32. Problems that Mimic Capacity Issues • Patient-staff conflict • Communication problems • Family conflicts and pressures • Transference and Counter-transference • Ethics conflict between autonomy-paternalism-beneficince • Nursing staff overhears a patient’s wife and older son telling him “it is time to let go and to think about how you are burdening the family.” The pt then requests removal of life-support.

33. Informed Refusal • The sliding scale standard of competence: • As risk of an intervention increases and/or benefits decrease, then the standard of decisional capacity is raised correspondingly. • A lower-risk procedure thus requires a less demanding standard of decisional capacity.

34. Rational and Reasoning • A person can comprehend yet be irrational. • Individuals have the right ethically and legally to communicate irrational choices against their own best interest. • Can an individual lack the higher order capacities of reasoning and appreciation and be capable of making life high stakes-great risk decisions: safety, medical care?

35. Nature of DMC in Psychiatric & Medical Patients • 125 patients in psychiatric hospital and 164 in medical unit. • All patients could express a choice. • MacArthur Assessment Tool and Clinical Interview. • Most patients scoring low on understanding were deemed to lack capacity in both settings.

36. Higher Order Capacities • 39% of psychiatric patients and 13% of medical patients hospitals could understand but still lacked capacity. • Appreciation best test of DMC in psychiatric patient (psychotic/affective). • Reasoning a better test of DMC in medical patients (cognitive impairment). • Owen GS, et al. Br J Psychiatry. 2013 Dec;203(6):461-7

37. Sliding Scale of Capacity to Refusal • HIGH-RISK • A 22-year old man with Schizophrenia refuses an emergency appendectomy because he thinks his abdominal pain is the result of eating too much peanut butter. • LOW-RISK • A 34 year old woman with borderline personality disorder complaining of insomnia, refuses a prescription for Trazadone because she is angry at the doctor.

38. Functional Capacity • Not grossly incompetent but subtle impairment • Impairment may be in appreciation/voluntarism not cognitive. • Patient may be able to communicate coherently, organize facts, confabulate/rationalize • Interferes with independent functioning but can seem capable in structured setting. • Patient has partial insight into safety concerns and provides plausible solution to problem.

39. Functional Criteria Cognitive Criteria Can be measured and quantified with neuropsychological testing. More objective and consistent finding More legal safeguards- Covers limited range of diagnoses/deficits • Difficult to measure or quantify even with a comprehensive psychiatric assessment. • Subjective-better with experience and training • More potential for exploitation/manipulation • Applies to more disorders/impairments Capacity Criteria Compared

40. Consultation Hints • Find out the core of the consultation request • Talk to the Nurses and staff to get their view. • See if there are social work issues that are contributing. • Explore the family dynamics and meet with the family of significant others if this would be helpful.

41. Consultation Hints • Check the patient’s MSE carefully. • Check to see if pain control is adequate and if sedation is excessive. • Call a Chaplain and not just if the issue is religious. • Finally and most overlooked. Talk to the patient.

42. Resident School Evaluation Form