Kendra J. Belfi, MD, FACP TAGS Ethics Conference

March 6, 2013

Describe the tension between Autonomy and Protection

Describe basic components of assessing capacity

Consider the importance of conversations about wishes and values while still able to communicate these

Societal values place a high value on autonomy

The Law in this country places a high value on autonomy

It’s the “right” thing to do

The United States: Autonomy has become the trump card when in conflict with other ethical principles

In some cultures, elders or the ill person is not to be disturbed with these questions which are to be handled by the appropriate child

In some cultures, a council of the elders in the community makes decisions

The courts in the United States have concluded that an individual has virtually absolute right to refuse any treatment

Persons must have capacity to make advance health care directives (but in Texas not to revoke them)

Sometimes—if we think the acute illness has affected the patient’s ability to make a decision (e.g. if the patient has delirium or is psychotic)

Israeli law places a higher value on the sanctity of life than on autonomy (better than 50% chance of succeeding and we think the patient will thank us afterwards)

Competence to Stand Trial Testimonial Capacity Contractual Capacity Capacity to Consent to Medical Treatment Testamentary Capacity

Knowing the Nature of a Will Knowing the Nature and Extent of One’s

holdings (not to the penny at least broadly_) Knowing the Natural Objects of one’s bounty

(One’s relatives or what people who would reasonably inherit)

Freedom from undue influence.

“As our society ages, clinical assessment of higher order functional capacities has become increasingly important. In areas like financial capacity, medical decision making capacity, medication compliance, and driving, society has a strong interest in accurately discriminating intact from impaired functioning” ◦ Marson, et al (2000) Archives of Neurology: 57:

To what extent should we support an older person’s autonomy (find her capable to act independently)

To what extent should we protect an impaired older person (and ourselves) from risks/dangers caused by her failing capacities (find her incapable and restrict autonomy)

Individualistic society ◦ Tension between individual autonomy and

protection Intergenerational transfer of wealth Breakdown of traditional family structure Increasing family disputes over care of elderly Issues: ◦ Control of health care and financial decisions ◦ Use of estate and inheritance

MMSE Clock drawing Boston Naming test MiniCOG Objects named in a certain time frame Formal Neuropsych testing

Cortical Dementias: memory and language ◦ Alzheimer’s ◦ Creutzfeld-Jacob ◦ (Multi=infarct)

Subcortical dementia: ◦ Changes in speed of thinking and ability to initiate

action ◦ Executive dysfunction Parkinson’s Huntington’s Multi=infarct

CLOX Or draw a clock—and ask patient to put in the

time 9:10

ADLs IADLs Evidence of poor judgment

Example: an excellent cook who can no

longer put a meal together Patients who believe appeals for money are

bills to be paid Are there unpaid bills? Is there moldy food in

the refrigerator?

Information Comprehension and processing Ability to choose Ability to communicate a choice

Risks Benefits Alternatives

Does patient understand her current status Does executive function appear to be intact Is this clearly a voluntary decision (no

coercion) Is there interference with patient’s free will by

substances, mental illness, personality disorder, undue influence

Language capacity (is the patient aphasic—if so is there another way to communicate reliably)

Receptive capacity of caregivers: (are we too busy to listen or to work at a non-usual method of communication)

Inability to understand risks, benefits and alternatives

Clear coercion or inappropriate incentives Dense aphasia, mutism

Patient able to repeat risks (but doesn’t believe they exist)

Waxing and waning delirium Undetected change in value due to illness Patient’s choice matches caregiver's values

Patient’s choice does not match caregiver’s values

Religious beliefs

Most physicians feel uncomfortable—leading to psychiatric consults which are often not helpful.

Frequently if there is concern about the patient’s ability to make decisions there is a medical issue being reflected (e.g. delirium)

Informed Voluntary Competent: does patient have the mental and

emotional capacity to consent “medical competency”: ◦ Issue arises in medical setting ◦ Involves a health care decision maker ◦ Decisions rarely subject to judicial review

Must understand that they are being asked to make a choice

Must appreciate the consequences of the choice—especially that the choice involves them

Must have capacity to reason about the treatment (provide “rational reasons” for the choice)

Must understand the treatment situation, treatment choices, respective risks/benefits.

We are much more likely to assume the patient is making an informed decision if they are agreeing with us

Need to go back to basics: ◦ What does the patient understand (in his own

words) about what is being proposed ◦ Does the patient understand he is being asked to

make a choice that involves HIM ◦ Does that patient understand the consequences of

agreeing to or refusing the intervention ◦ Is this decision consistent over time and with

lifelong values.

From AMDA: Caring for the Ages 2/17/2013 74 year old widow in NF has a mammogram

showing probable breast cancer but refuses an excisional biopsy

1) should the mammogram have been done? 2) would anyone have questioned if she

agreed to treatment? Consent is not a form—it is a process.

Explore understanding Explore fears Always seek the patient’s best interest

A late stage dementia patient can still be given choices between two pieces of clothing or whether or not to attend an activity

An early stage Alzheimer’s patient may not have the capacity to execute a will but may be able to reliably tell you which of her children or friends that she trusts to make medical decisions for her. (MPOA)

That same patient, however, may not be able to adequately understand a complicated medical consent issue.

Am J Geriatr Psychiatry. 2012 Sep 19. Clinical and Ethical Aspects of Financial

Capacity in Dementia: A Commentary: A Commentary.Marson DC.

JAMA. 2011 Feb 16;305(7):698-706. Finances in the older patient with cognitive

impairment: "He didn't want me to take over". Widera E, Steenpass V, Marson D, Sudore R.

TADA: patient must have capacity (based on reasonable medical judgment) to execute a directive

Patient must have lost capacity (competence) also based on reasonable medical judgment before Directive to Physicians, Family and Surrogates OR MPOA comes into force.

Patient does not have to be competent to revoke a directive.

Re: advance directives: don’t try to impose YOUR values on the patient

Re: treatment decisions: Language can make a big difference. We want to act always in the best interest of the patient while respecting the patient’s wishes. ◦ If patient says no, gently explore why not

(misunderstanding, fear….)

Most older persons still have the capacity to make good decisions—and we should not lose that window of opportunity.

Exploration of goals and values before asking a person to make specific decisions is extremely important to facilitating this conversation.

Respecting Choices: http://respectingchoices.org/

The Conversation Project: http://theconversationproject.org

Dr. William Molloy (Canada): I Decide Speak for Yourself Program 3/23/13 at TCU

from 8:30am to noon. Call 817-732-2825 or you may email mbriggs@tcms.org to register.