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 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.

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 VoluntarismDevelopmental 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 self-determination.

A veteran with post-traumatic 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 ConsentA 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 procedureNot a primarily legal matterAn ongoing processA 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

PainFatigueMedicationsIntensive 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 NewsStudies also show that the process of informed

consent can be improved in healthy, medically ill AND psychiatric patients. Through:

EducationUse of audio-visual materialsProviding 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 (non-

competent) 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 requestTalk 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.