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Facilitating Advance Directives for Mental Health Care

Christine M. Wilder, M.D.Department of Psychiatry

Duke University School of Medicine

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Why Use Advance Directives for Mental Health Care?

• Enhance autonomy and self-directed mental health care

• Provide ER and inpatient doctors with transportable documentation of a patient’s treatment preferences and history Medical disorders, emergency contact

information, side effects of medication

• Improve therapeutic alliance and treatment adherence

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AD Completion Rates by Study Group

Baseline 2 months Control Group (n=230)

1 (0.5%) 8 (3%)

F-PAD Group (n=239)

3 (1%) 149 (62%)

After Swanson et al 2006, Am J Psychiatry 163:1943-51

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“I do not consent to the administration of the following medications . . . [lists 9 meds]”

Excerpts from Unfacilitated AD:

“. . . Episodes are to be managed at home where my special foods are prepared by me or health care aide as no hospital can afford my expensive diet. . .”“. . . DO NOT NOTIFY my son ________ or his family, as they are hostile relatives.”

“I do not consent to being admitted to. . .[lists 4 hospitals] where abusive treatment has occurred . . .I would want a legal aid attorney to see me ASAP.”

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Facilitated AD from Same Participant

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AD Content: Medications• 94% gave advance consent to

treatment with at least one psychotropic medication (mean = 2.4)

• 77% refused at least one psychotropic medication (mean= 1.5)

• No participant refused all medications• On average, participants gave advance

consent to twice as many medications as they refused

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Sample Medication Choices

“I refuse Haldol because it makes me stiff, I get blurred vision, and feel like a zombie.”

“I don’t want Depakote because one time I had it and I got Pancreatitis.”

“They’ve given me Ativan before but I absolutely do not want any medications I could become addicted to.”

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AD Content: Hospitals

• 88% gave advance consent to hospitalization in at least one specified facility

• 62% documented advance refusals of admission to particular hospitals

• 51% gave reasons for refusal

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Sample Hospital Comments

“I want to go to [hospital X] because it is closest to my parents and they treat me well there.”

“I do not wish to go back to [hospital Y], I was thrown in a dark room and am scared and was hurt by another patient last time.”

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AD Content: Emergency Contacts

• Includes family, friends, doctors and counselors that participant would want to have contacted in the event of crisis

• Provides prior consent for communication between inpatient and outpatient treatment providers

• On average, participants listed 3 emergency contacts

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Facilitator Role

• Providing information and education about ADs, including their limitations

• Helping consumers identify appropriate agents to act in their stead during a period of incapacity

• Eliciting preferences and advance consent or refusal for psychotropic medications, hospital treatment, or ECT

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Facilitator Role

• Gathering information about crisis symptoms, relapse and protective factors, instructions for inpatient staff, and other relevant information the consumer thinks is important

• Providing assistance for filing ADs at local health care facilities and storing them in the U.S. Living Will Registry

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Beginning a Facilitation

• Orient the consumer to the purpose of your meeting

• Explain what an AD is and why s/he might want one

• Review the limitations of an AD

• Determine if the consumer would like to complete an AD

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Identifying an Agent

• Clarify what an agent is and why the consumer might want one

• Determine if the consumer wants to identify an agent

• Elicit the consumer’s preferred agents

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Demonstration and Small Group Practice: Identifying an Agent

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Eliciting Preferences

• You are acting as a facilitator, not a provider

• Consumer has ultimate control over his/her AD

• It is appropriate to test feasibility with consumer, clarify consumer statements, and explore reasons for preferences

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Challenges in Eliciting Preferences

• Consumers who have trouble expressing preferences

• Consumers who have too many preferences

• Consumers who have unrealistic preferences

• Conflict between clinical and facilitator role: when you know too much

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Demonstration and Small Group Practice: Eliciting Preferences

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Overcoming Logistical Barriers to Completing ADs

• If consumer wants to sign the “Ulysses clause,” a co-signature from a psychiatrist or clinical psychologist is required

• ADs need to be witnessed by two adults; the facilitator can act as one witness

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Ensuring ADs Are Read by Providers and Family

• Make copies of AD and send to relevant outpatient and inpatient facilities

• Encourage consumer to discuss AD preferences with health care agents, clinicians, and other family members

• Consumers should keep a copy of their ADs with them at all times

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Conclusion

• ADs can help empower consumers with mental illness when they experience crises

• AD facilitation is most helpful when: 1. consumers are educated about how these

legal documents work, and

2. efforts are made by the facilitator to both honor consumers’ preferences and assist in writing a feasible AD

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National Resource Center on Psychiatric Advance Directives http://www.nrc-pad.org