NRCPAD Facilitating Advance Directives for Mental Health Care Christine M. Wilder, M.D. Department of Psychiatry Duke University School of Medicine

NRCPAD 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

NRCPAD AD Completion Rates by Study Group After Swanson et al 2006, Am J Psychiatry 163:

NRCPAD “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.”

NRCPAD Facilitated AD from Same Participant

NRCPAD 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

NRCPAD 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.”

NRCPAD 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

NRCPAD 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.”

NRCPAD 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

NRCPAD 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

NRCPAD 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

NRCPAD 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

NRCPAD 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

NRCPAD Demonstration and Small Group Practice: Identifying an Agent

NRCPAD 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

NRCPAD 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

NRCPAD Demonstration and Small Group Practice: Eliciting Preferences

NRCPAD 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

NRCPAD 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

NRCPAD 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

NRCPAD National Resource Center on Psychiatric Advance Directives