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Myths about Decisional Capacity Cynthia M.A. Geppert, M.D., Ph.D.,M.P.H. Chief Consultation-Liaison and Ethics New Mexico Veterans Affairs Health Care System 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. Surrogate Myths If a patient lacks decisional capacity, a court order appointing a surrogate must be obtained before the patient can be treated. Only a spouse for an adult or the parent of a child can serve as a surrogate decision maker. Surrogates accurately predict the preferences of patients. 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. 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. 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. The components of decisional capacity The ability to communicate. A patient is able through verbal or nonverbal means to express his wishes. Very sensitive to education, culture and language. A patient with lockedin syndrome blinks his eyes in response to questions regarding continuation of life support. 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. The capacity to reason The ability to rationally manipulate the facts given and arrive at a logical conclusion. The “Spock criterion.” 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. 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. Domains of Voluntarism Developmental Factors: Progressive emotional and intellectual maturity of young people to make medical decisions. Illness-related considerations: Ambivalence & pessimism of depression,compulsive use & impulsive behaviors in SUD. Psychological Issues & cultural and religious values: Family autonomy in Hispanic,Native American, Asian cultures External Features & Pressures: Relationship with caregiver; economic burdens end of life care. Voluntarism: the forgotten capacity The ability to make free and authentic choices without internal or external coercion which prevents or impedes the exercise of selfdetermination. A veteran with posttraumatic stress disorder refuses a request from his primary care physician to participate in a research study. What to do when the patient lacks decisional capacity Does the patient have an advance directive such as a Living Will or Durable Power of Attorney for Health Care? 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 Inaccuracy of Surrogates 50 VA pts and their surrogates given questionnaires describing common scenarios for life support. Surrogates guessed pts answers. 59.3% of time surrogates accurately guessed pts wishes Not better than chance. Only accurate predictor of decision making was prior discussion of wishes. Suhl. Arch Intern Med. (1994) Surrogates Substituted judgment standard is now the preferred method of surrogate decision making. If there is no knowledge of patient preferences or values, then best-interests standard is used. “What a reasonable person would want done in the situation.” Informed Consent A legal and ethical doctrine that states individuals understand proposed research or clinical intervention and freely choose to participate. Rooted in the philosophical doctrine of respect for persons and autonomy. For true informed consent, decisional capacity is necessary or a surrogate decision maker. The following information should be explained to the pt in a comprehensible manner. Elements of Informed Consent The diagnosis and prognosis with and without treatment. The nature of the proposed intervention. The risks and benefits of the proposed intervention. The alternatives and outcomes including NO treatment. What Informed Consent Is and Is Not Not the mere signing of a form. Not a one time procedure Not a primarily legal matter An ongoing process A dialogue involving both verbal and written information. A clinical decision that is an integral expression of the physician-patient relationship. Medical Conditions that can Influence Informed Consent 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. Neuropsychiatric Conditions that can Influence Informed Consent 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. Psychiatric Conditions that can Influence Informed Consent 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. 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. 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. Cultural Situations that can Influence Informed Consent 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. Problems that Mimic Informed Consent Issues Patient-staff conflict Communication problems Family conflicts and pressures Transference and Counter-transference 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. 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. Sliding Scale of Informed 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. How to Facilitate Informed Consent. The Bad News Studies have documented problems with every aspect of the informed consent process in healthy and medically ill patients. These problems are only compounded with psychiatric patients. How to Facilitate Informed Consent The Good News Studies also show that the process of informed consent can be improved in healthy, medically ill AND psychiatric patients. Through: Education Use of audio-visual materials Providing ongoing opportunities for pts to discuss consent. Confidentiality Sensitive information revealed within the MD-Pt relationship is not disclosed without the pt’s consent or legal exceptions. Rooted in the ethical doctrine of autonomy, fiduciary nature of MD-Pt relationship and the legal right to privacy. Exceptions to Confidentiality STDs Child abuse Elder (noncompetent) abuse Sexual partners of HIV+ who refuse to notify in some states. Suicidality Homicidality: Tarasoff I & II. California 1980s. Duty to warn and duty to protect identifiable victim. Call victim, authorities, hospitalize, medicate. 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. 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.