Betty Rowland, MS Consultant, NAMI-NC Michele M. Easter, PhD Senior Research Associate Department of Psychiatry and Behavioral Sciences Duke University Medical Center Thanks to Marvin Swartz, MD for sharing his knowledge & resources 1 What is a Psychiatric Advance Directive (PAD)? Video excerpt Why make a PAD? Case example Discuss How do you make one? Interaction is welcome! We can learn from each other. Excerpt from Crisis in Control (Film by Delaney Ruston) https://www.youtube.com/watch?v=- QUi2QGodI4 [1 st 2 minutes] 1
Legal document(s) to allow a person of sound mind To refuse or give consent to future psychiatric treatment AND/OR To authorize someone else to make decisions about treatment, based on individual s stated preferences. Only used temporarily, while person has lost capacity. Helps a consumer s healthier voice be heard Supports recovery, as the individual gives clear instructions about preferences for healthcare Encourages dialogue about care between individuals and their treatment providers PAD is a legal document that providers are required to consider 2
Supports consumer autonomy and empowerment in mental health care. Allows health care agents to speak directly with providers during crises. Allows health care agents to help make decisions during crises. May reduce involuntary treatment. May improve continuity of care. Advance directives are a condition of participation in Medicare & Medicaid. Ms. A is a 30 year old woman with a history of schizophrenia and several hospitalizations during relapses. When ill, she suffers from auditory hallucinations and delusions and often can not respond coherently. She is brought to the ED by her family, who indicate she has stopped eating, appears to be hallucinating and is essentially mute. The ED has no available records on Ms. A. since she has been hospitalized elsewhere in the past. The examining psychiatrist can not take a meaningful history because Ms. A is uncommunicative. The psychiatrist begins to prepare for involuntary commitment proceedings and possibly forced medication. 3
The family asks to speak with the physician, who is reluctant to speak with the family since Ms. A has not consented to his doing so. The sister indicates she is Ms. A s health care agent and is prepared to make whatever decisions needed on Ms. A s behalf. She indicates Ms. A has executed a mental health advance directive and a health care power of attorney. She produces a copy of each and indicates they are also online at the NC Secretary of State s Advanced Health Care Directory Registry. In reviewing the documents, Ms. A has consented to hospital admission when needed, a regimen of specific medications, consent to speak to her doctor, other providers and family. She also appoints her sister as health care agent with authority to make whatever decisions are consistent with Ms. A s previously expressed wishes. Having never encountered such a situation, the psychiatrist consults with the hospital attorney, who recommends he proceed with admission and treatment under the authority of the advance instructions and health care power of attorney if he feels the patient is incapable. The physician documents in the record that Ms. A is incapable and reviews the history and treatment responses with the health care agent and outpatient treating psychiatrist. The physician admits Ms. A based on the consent of the health care agent who also consents to the treatment plan suggested in consultation with the local psychiatrist. After several days of hospital treatment, Ms. A is coherent and cooperative. The physician documents that she is now capable and can make her own treatment decisions. Dilemma: Ms. A was headed to involuntary commitment due to: Lack of consent to admission Lack of consent to treatment Lack of information of previous history No clear mechanism to collaborate with family PAD was mechanism to solve each problem. 4
Patient Self-Determination Act (PSDA) of 1991 requires hospitals and clinics to assist in the use of Medical Advance Directives ( living wills ). In states with Psychiatric Advance Directives laws, the PSDA requires hospital and clinics to assist in their use. Forms Witnessing and notarization Dissemination Getting help from a PAD-facilitator can make the process easier and the written document more effective Instructional Directive (NC GS 122C-77): Similar to a living will. Documents wishes, consent or refusal of future care. Health Care Power of Attorney (NC GS 32A-25): Appoints another person to make decisions during crises. May be designed with limited or broad powers. In North Carolina, can have either or both. 5
Usually permits individual to plan for, consent to, or refuse: Hospital admission Medications Electroconvulsive treatment Other treatments for mental illness. Takes effect in the event individual loses ability to make decisions (is incapable ). Who to contact in case of a crisis. What may cause a mental health crisis. What may help a person to avoid hospitalization. How the person generally reacts to hospitalization. Other instructions. 6
Any adult of sound mind can make. Signed in presence of two witnesses: Not a relative. Not person s doctor, mental health provider or other staff. Not staff of a health care facility in which the client is a patient. Must be notarized. Must make a part of medical record. Must act in accordance with instructional directive when patient is determined to be incapable. May notify all other providers to follow instructional directive. Clinicians may disregard instructions: Not consistent with generally accepted community practice standards. When treatments requests are not feasible or unavailable. When treatment requests would interfere with treating an emergency. Instructions may be over-ridden by involuntary inpatient commitment, or if they conflict with other law. 7
Generally: If one part the instructions cannot be carried out, the remaining instructions must still be followed. If not followed, reason for not following instruction must be communicated and documented. Rules for changing instructions may vary across states. Generally: Instructions may be changed whenever the person is competent or capable. Allows a person to appoint someone to make treatment decisions when consumer is incapable or incompetent. Can be combined with instructional directive, but may be two different forms. Any capable adult may execute. 8
Any competent adult 18 or older. Person usually cannot be providing health care to consumer. Consumer can often name several people to serve if one unavailable. Can make whatever treatment decisions the consumer could usually make, unless the consumer limits the authority of the health care power of attorney. Must make decisions consistent with any statements in instructional directive, if one exists. Can discuss and review treatment information. Can usually consent/refuse admission to hospital. Can usually consent/refuse medications and ECT. 9
Consumers, clinicians and families have not realized they should encourage them! Completing an advance directive may bring up emotionally distressing memories or situations. Advance directives have a number of logistical and financial barriers. Help in completing advance directives may not always be available. Perceived operational barriers lack of communication and coordination across service sectors lack of access to the document in a crisis Perceived clinical barriers unrealistic or inappropriate treatment requests consumers desire to change their mind about treatment during crises concerns with consumers competency to complete document Liability concerns Psychiatrist: Would I rather be sued by a patient because I didn t follow their advance directive, or by somebody else because I did? 10
Duke studies National survey on consumer interest in PADs Experiment comparing PAD facilitation vs. not Implementation experiment with Assertive Community Treatment teams, comparing facilitation by peer support specialists vs other providers Results currently being analyzed. Increasing interest in PADs as a tool of recovery Division Crisis Solutions Initiative LME/MCOs ACT teams NAMI Can place in medical record Can let your local LME/MCO know that you have completed a PAD Registries (secure web sites): o US Living Will Registry o NC Department of the Secretary of State Advance Health Care Directive Registry 11
The mission of the U.S. Living Will Registry is to promote the use of advance directives through educational programs, and to make people's health care choices available to their caregivers and families whenever and wherever they are needed, while maintaining the confidentiality of their information and documents. Founded by Dr. Joseph Barmakian in 1996, the U.S. Living Will Registry is a privately held organization that electronically stores advance directives, organ donor information and emergency contact information, and makes them available to health care providers across the country 24 hours a day through an automated system. Our policies and procedures were developed in consultation with attorneys who represent hospitals. All health care providers have access to the documents and information, and privacy and confidentiality are always maintained. Standard Forms: Registration Form Health Care Power of Attorney Form Advance Instruction for Mental health Treatment Revocation Form Steps to register: Print a registration sheet from the website Fill in the required information. Witness (2) and notarize forms. For each directive you wish to register with the North Carolina Secretary of State, please attach a $10.00 fee. Submit one (1) cover sheet for each directive to be filed. Mail to: North Carolina Secretary of State Attention of Advance Health Care Directive Registry, Post Office Box 29622, Raleigh, North Carolina 27626-0622. 12
Next Steps: Will receive a registration card and password Copies should be given to people who might need them Password will provide access to website Revocation will remove forms National Resource Center on Psychiatric Advance Directives http://nrc-pad.org NAMI Psychiatric Advance Directives: An Overview http://www2.nami.org/template.cfm?section=issue_spotlights &template=/contentmanagement/contentdisplay.cfm&conten tid=137779 Bazelon Center www.bazelon.org National Mental Health Association www.nmha.org NC Mental Health Consumers Organization www.naminc.org/consumer.htm NC Secretary of State Advance Health Care Directive Registry www.sosnc.com 13
Contact information: Betty Rowland browland@naminc.org Michele Easter michele.easter@duke.edu The National Resource Center on Psychiatric Advance Directives www.nrc-pad.org 14