Borderline personality disorder: considerations for inclusion in the Massachusetts parity list of "biologically-based" disorders.

Borderline Personality Disorder (BPD) is a common and severe mental illness that is infrequently included under state mental health parity statutes. This review considers BPD parity, using the Massachusetts mental health parity statute as a model. While BPD can co-occur with other disorders, studies of its heritability, diagnostic validity/reliability, and response to specific treatments indicate it is best considered an independent disorder, one that negatively impacts the patient's treatment response to comorbid disorders, particularly mood disorders. Persons with BPD are high utilizers of treatment, especially emergency departments and inpatient hospitalizations-the most expensive forms of psychiatric treatment. While some patients remain chronically symptomatic, the majority improve. The findings from psychopharmacologic and other biologic treatment data, coupled with associated brain functioning findings, indicate BPD is a biologically-based disorder. Clinical data indicate that accurately diagnosing and treating BPD conserves resources and improves outcomes. Based on this analysis, insuring BPD in the same manner as other serious mental illnesses is well-founded and recommended.

Using a hypothetical scenario to inform psychiatric advance directives.

OBJECTIVES: The study addressed whether a hypothetical psychiatric scenario is a feasible approach for eliciting psychiatric treatment preferences and identified consumer preferences regarding involuntary care. METHODS: Community-residing adults with serious mental illness (N=150) voluntarily completed the Health Care Preferences Questionnaire to determine treatment preferences in response to the use of psychiatric medications, seclusion and restraint, and electroconvulsive therapy (ECT). A vignette was used to determine preferences first with respect to an imaginary patient and then with respect to the respondent. RESULTS: Few participants were distressed by the psychiatric scenario (7%). In regard to their own care, in an emergency most participants supported the use of involuntary treatments (medications, 70%; medication injection, 76%; and seclusion and restraint, 73%), with the exception of ECT (quick treatment, 32%; if life is in danger, 60%). Participants were less likely to support treatments for themselves than for an imaginary patient. The majority (65%) identified specific medication preferences. CONCLUSIONS: Scenarios about the state of medical and psychiatric health are a feasible method of identifying treatment preferences. They are well tolerated and may serve as a model for assisting persons with serious mental illness in considering difficult treatment decisions.

Consent form readability and educational levels of potential participants in mental health research.

OBJECTIVES: Poor readability of informed consent forms has been a persistent problem in clinical research. The low educational attainments of many patients with mental illness might suggest a still greater problem in mental health settings. To explore this potential disparity, this study sought to determine whether the informed consent forms used in research approved by the Massachusetts Department of Mental Health were written at a grade level that was higher than that achieved by potential study participants. METHODS: The readability (grade level necessary to read text) of informed consent forms for 154 studies was calculated with several standard formulas. Readability scores were stratified on the basis of the risk level of the study from which the consent form was taken. These data were then compared with data on the maximum attained grade level of potential participants aged 19 years or older. RESULTS: The overall mean readability scores for the informed consent forms, as determined by the four methods, ranged from grade levels 12 to 14.5. Furthermore, the mean readability scores increased with higher risk levels of the studies. Approximately 35% of potential participants had not graduated from high school, 37% had graduated from high school or obtained a GED, and 28% had some education beyond the 12th grade. CONCLUSIONS: These data demonstrate poor readability of informed consent forms used in research approved by the Massachusetts Department of Mental Health and highlight a mismatch between consent form readability and the educational level of potential study participants. The findings suggest that methods of reducing the complexity of forms, as part of improving the overall consent process, are much needed.

Medical advance care planning for persons with serious mental illness.

OBJECTIVE: This study examined preferences regarding medical advance care planning among persons with serious mental illness, specifically, experience, beliefs, values, and concerns about health care proxies and end-of-life issues. METHODS: A structured interview, the Health Care Preferences Questionnaire, was administered to a convenience sample of 150 adults with serious mental illness who were receiving community-based services from the Massachusetts Department of Mental Health. Clinical information and demographic data were also collected. RESULTS: A total of 142 participants completed the questionnaire. Although more than one-quarter had thought about their medical treatment preferences in the event that they became seriously medically ill, very few had discussed these preferences. A majority of respondents (72 percent) believed that someone should be designated to make medical health care decisions for a person who is too sick to make or communicate these decisions him- or herself. Common end-of-life concerns included financial and emotional burdens on family, pain and suffering, interpersonal issues such as saying "goodbye," spiritual issues, and funeral arrangements. Participants were most uneasy about the prolonging or stopping of life support by proxy decision makers. A total of 104 respondents (69 percent) expressed interest in formally selecting a health care proxy. CONCLUSIONS: Although persons with serious and persistent mental illness have little experience with medical advance care planning, they show substantial interest in it. Furthermore, they are able to consider and communicate their preferences. This study supports the feasibility, acceptability, and utility of a standardized approach to medical advance care planning with this population.

End-of-life treatment preferences of persons with serious mental illness.

OBJECTIVE: The goal of this study was to ascertain preferences for end-of-life care among persons with serious mental illness. METHODS: The participants were 150 community-residing adults with serious mental illness. The Health Care Preferences Questionnaire was administered to obtain information about treatment preferences in response to hypothetical medical illness scenarios: use of pain medication in the case of incurable cancer and use of artificial life support in the case of irreversible coma. Participants were asked what their treatment preferences would be for an imaginary person in each scenario ("other") as well as their preferences for themselves ("self"). RESULTS: For the scenario involving pain medication for incurable cancer, most participants chose aggressive pain management even if cognition might be affected (64 percent of respondents under the "other" scenario and 66 percent under the "self" scenario). Few participants thought a doctor should provide patients with enough medication to end their life (34 percent for self and 24 percent for other). For the scenario involving irreversible coma, respondents were divided in their choice regarding life support. Approximately one-quarter said that they would prefer to immediately terminate life support (28 percent of respondents for other and 29 percent for self), and half said they would choose to turn it off after a defined period (48 percent for other and 45 percent for self). CONCLUSIONS: Persons with serious mental illness were able to designate treatment preferences in response to end-of-life health state scenarios. Future research is needed to test advance care planning methods, assess stability of choices over time, and ascertain the utility of scenario-based preferences to guide end-of-life care decisions in this population.

End-of-life care and mental illness: a model for community psychiatry and beyond.

End-of-life care is often influenced by the stereotyping of patients by age, diagnosis, or cultural identity. Two common stereotypes arise from the presumed incompetence of many patients to contribute to end-of-life decisions, and the fear that the discussions themselves will be de-stabilizing. We present a model for end-of-life discussions that combines competence assessment with healthcare preferences in a psychiatric population that faces identical stereotypes. The model, which draws on clinical research in competence and suicide risk assessment, has important implications for all patients in the community who are marginalized or stereotyped during discussions of end-of-life treatment.

"Do It Your Way": a demonstration project on end-of-life care for persons with serious mental illness.

Over the last decade, America's health care systems have been challenged to incorporate advance care planning and end-of-life care into their service delivery systems to assure that persons with terminal illnesses receive compassionate individualized care. Despite the surge in new research and knowledge, some groups remain understudied and underserved, such as persons with serious mental illness. "Do It Your Way," a demonstration project, was developed and implemented in a Massachusetts public mental health system to improve access to advance care planning and end-of-life care among persons with serious mental illness. This report provides an overview of the project, including its rationale, setting, needs assessment, objectives, initiatives, preliminary evaluation, impact, and conclusions.