Transcription

A PRACTICAL GUIDE TOPSYCHIATRIC ADVANCEDIRECTIVES

AcknowledgmentsThis report was prepared for the Substance Abuse and Mental Health Services Administration(SAMHSA) under contract number HHSS283201200058I/HHSS28342003T with SAMHSA, U.S.Department of Health and Human Services (HHS). Nadine Benton served as the contractingofficer.DisclaimerThe views, opinions, and content expressed herein are the views of the authors anddo not necessarily reflect the official position of SAMHSA, other federal agencies oroffices, or HHS.Public Domain NoticeAll material appearing in this quick guide except that taken directly from copyrightedsources is in the public domain and may be reproduced or copied without permissionfrom SAMHSA. Citation of the source is appreciated. However, this publication maynot be reproduced or distributed for a fee without the specific, written authorizationof the Office of Communications, SAMHSA, HHS.Electronic Access and Copies of PublicationThis publication may be downloaded from SAMHSA’s Evidence-Based PracticesResource Center nded CitationSubstance Abuse and Mental Health Services Administration: A Practical Guide toPsychiatric Advance Directives. Rockville, MD: Center for Mental Health Services. SubstanceAbuse and Mental Health Services Administration, 2019.Originating OfficeCenter for Mental Health Services, Substance Abuse and Mental Health Services AdministrationNondiscrimination NoticeSAMHSA complies with applicable federal civil rights laws and does notdiscriminate on the basis of race, color, national origin, age, disability, or sex.SAMHSA cumple con las leyes federales de derechos civiles aplicables y nodiscrimina por motivos de raza, color, nacionalidad, edad, discapacidad o sexo.2

ContentsPractical Guide to Psychiatric Advance Directives .4Resources and Crisis Planning .16References .18Appendix, Sample ResourcesGlossary .22Worksheets .25Informational Flyer .41Tips for a Healthcare Agent .43Wallet Card .44

A Practical Guide to Psychiatric AdvanceDirectivesIntroductionThis document originated from an expert panel meeting on Psychiatric Advance Directives that wascalled by Anita Everett, MD, Chief Medical Officer of SAMHSA on March 13, 2018 at the request ofAssistant Secretary for Mental Health and Substance Use, Dr. Elinore McCance-Katz. It providesbackground and practical information to those interested in promoting the use of psychiatric advancedirectives as a tool for promoting self-directed care in psychiatric treatment, making progress towardparity in mental health treatment, and supporting crisis planning and the rights of persons who live withmental illness.What are Psychiatric Advance Directives?A psychiatric or mental health advance directive (PAD) is a legal tool that allows a person with mentalillness to state their preferences for treatment in advance of a crisis. They can serve as a way to protecta person’s autonomy and ability to self-direct care. They are similar to living wills and other medicaladvance planning documents used in palliative care.“The reason I worked so hard to get my own personal PAD in place was because I never know when theday may come that I will not be mentally stable enough to make decisions regarding my own psychiatrichealthcare. Trusting my brother and sister-in-law, wholeheartedly, I know that with them on my PAD tomake those decisions for me, I’ll be taken care of. They know my wishes and are aware of themedications and procedures I am or am not willing to take or be a part of and I know they will advocateto the fullest for my wishes and my care.”-Charlene LeeDuring the darkest moments the PAD speaks for me by allowing me to be an active part of my treatmentwhen I am not able to.-Aaron WillisLaws on PADs vary by state. In general, a PAD has two parts: an advance instruction and a health carepower of attorney. A person who wishes to develop a PAD can use one or both parts. The advanceinstruction can detail preferences for treatment, give consent for admission and consent for contact inadvance. It can detail preferred medications and treatment modalities. It can also give instructions fortending to practical life matters, such as child care and contacting an employer. The health care power4

of attorney can be used for medical or psychiatric emergencies. It allows the person to appoint a trustedindividual to serve as health care agent with decision making authority during times that a person isunable to make decisions due to incapacity. The health care power of attorney forms may also describewishes for end of life care and other instructions and can be used as a stand-alone document if theperson chooses.PADs have been around for years, but they aren’t often used in clinical settings. Many people who livewith mental illness, their families, and the professionals who serve them, are unaware of the existenceof PADs. Even with awareness of their availability, persons with mental illness may find the legal formsdifficult to navigate and may not be able to access legal guidance on their completion. Clinicians mayalso be unsure of how best to incorporate PADs into clinical practice. And professionals who work incrisis settings and emergency psychiatric settings may be unfamiliar with the tools and reluctant to giveup clinical authority for treatment decisions in busy crisis settings.I think Psychiatric Advance Directives could first and foremost be a communication tool between patientswho are too ill to express their wishes and doctors who want to help them. Throughout my training andcareer I have been disappointed to hear the doctor-patient relationship in mental health characterizedsometimes as an almost adversarial one. In my experience, the majority of doctors and patients want thesame thing: recovery, quality of life, and functioning. The reality is that acute mental illness, when itimpacts capacity and causes behavioral and cognitive change temporarily, can make it hard for doctorsand patients to work together towards patient goals. Acute mental illness also makes it hard to gatherhistory and collateral, which creates more distance. I think mental illness specifically is different in thisway than other types of acute illness that do not impact cognition, behavior, mood, and sense ofreality. We need to do everything we can to bring everybody together to work towards the goals ofpatients given that acute mental illness and crisis does happen. I think Psychiatric Advance Directivesempower patients, when well, to articulate their wishes and their history. When they are used correctly,they could be a great help for doctors trying to make decisions in a system where treatments arecomplicated, information sharing is fragmented, and families are also not always immediately available,even if patients would want them to be. They could be a voice for patients, a much-desired voice thatdoctors do want to hear. This is about patient-centered care but that to me also means collaboration andshared decision making with providers. The Psychiatric Advance Directive could be one tool in this vitalprocess.Monica Slubicki, MD, psychiatristA PAD goes into effect when a person is found to lack decision-making capacity. A treating physician orpsychologist makes the decision about capacity based on how the person presents at the time ofexamination. Some examples of periods when a person may lack capacity include acute psychosis,mania, catatonia, delirium, or unconsciousness. In a crisis situation, if a person has been deemedincapable, the PAD goes into effect and treating medical professionals can refer to the PAD to get a cleardescription of the person’s preferences for treatment, who to contact in their support network, and howbest to support the person in crisis. If there is a health care power of attorney in place, the designated5

health care agent can make decisions in the person’s interest. PADs are only used temporarily, and onlywhen the person is incapable of making or communicating treatment decisions. Once the person regainsdecisional capacity, they can resume participating directly in decisions about care.Any adult of sound mind can create a PAD. The witnessing process serves to attest to the person’s soundmind and the voluntary aspect of PAD creation. Researchers found that part of the motivation for havinga PAD comes from a desire to avoid coercive interventions. In one study, when respondents were askedabout their past treatment experiences, 82 percent reported some kind of crisis event that involvedcoercive care that was very disturbing to them. Types of intervention included police transport totreatment, being placed in handcuffs, being involuntarily committed, secluded, restrained, and havingforced medication.In addition to being valuable in a crisis, the process of developing a PAD can help people clarify theirpreferences for treatment and plan for crises – including having conversations that can sometimes helpprevent crises from occurring. The planning conversations often include family members or others in aperson’s social support network. Sometimes the conversations around planning for crisis can be difficult,as people may be reluctant to revisit past crises. However, when the conversations are handled skillfully,they can empower a person and their support network and support a path to recovery.I’ve been a lawyer since 1982 and an Assistant Public Defender since 1986. I’ve represented thousands ofpeople over the years, worked on criminal justice reform, prison reform, drug and mental health treatmentcourts, and seen many preventable tragedies and some miraculous changes in people’s lives. I know thatrecovery is real, recovery works and recovery can be very hard to find in our fragmented “systems” of care.It’s a sad truth that our culture has conditioned us to wait for one or more very painful events beforeturning our lives around. It’s also a sad truth that many people only find the help they need through thecriminal justice or civil commitment system. Meanwhile, other holistic and preventative communitysupport systems have been downsized or eliminated, putting greater pressure on individuals, families,health care and justice systems to go it alone and without a game plan.Recovery and self-determination don’t have to wait for the system to improve. The good news is thatPsychiatric Advance Directives and Health Care Powers of Attorney are legal and medical documents thatcan help avoid a serious health and legal crisis. They make it possible for someone with a mental healthcondition to save time, money, and better maintain overall health and welfare - even under challengingcircumstances. They also make it possible to avoid pain, coercion, forced medications, solitaryconfinement, jail, prison, hurt or broken relationships, poorer health, and worse. I recommend them toanyone even remotely affected by mental illness, addiction, trauma, dementia, or any other healthcondition where symptoms could result in hospitalization at a psychiatric facility.-Robert L. Ward, Assistant Public Defender, Mecklenburg CountyPADs can also enhance the therapeutic alliance by helping people feel more connected to their cliniciansand service providers. When done within the context of mental health treatment, the conversation6

around developing a PAD enhances the process of informed consent, improves continuity of care, andgives a mechanism for the family or significant others to be involved in treatment officially, withouthaving to go through a consent process during a crisis. PADs support the ethical principles of autonomy,beneficence, and justice. They may be particularly useful in addressing justice in mental health settings –people of color are more frequently hospitalized for psychiatric reasons – with white people morefrequently engaged in outpatient treatment. The completed PAD can a powerful mechanism to reduceinvoluntary treatment, which research has found to be one of the most disturbing aspects of the mentalhealth system.HistoryThe history of PADs is related to medical advance directives for end of life planning. These originaladvance directives were born out of a Supreme Court decision in the Cruzan v. Director, MissouriDepartment of Health (Cruzan v. Director, Missouri Department of Health, 497 U.S. 261 (1990)), whichsaid that clear and convincing evidence of a patient’s preferences were required for removal of lifesupport. Nancy Cruzan was in a persistent vegetative state after a car accident. Her parents soughtremoval of a feeding tube, but the state would not allow them to make that decision given that theirdaughter was incompetent and they did not have clear evidence of her wishes regarding life support.The Supreme Court decided in favor of the Missouri Department of Health. The case spurred interest inthe expansion of living wills and medical advance directives. Shortly after that decision, the Patient SelfDetermination Act of 1990 operationalized advance directives by requiring hospitals receiving federalassistance to ask patients if they had an advance directive or would like one, to give them informationabout how to create one, and to honor them.In the 1990’s, PADs developed in parallel to medical advance directives and as a component of recoveryoriented care. PADS have been seen as a mechanism to facilitate engagement of persons in directingtheir own care at times of incapacity so that the crisis is overall less disruptive and disabling and so thatthe person can resume wellness as soon as possible. PADs differ from medical advance directives inseveral key respects – living wi