Name of Project: End-of-Life Care for Persons with Serious Mental Illness
Institution: Massachusetts Department of Mental Health, Metro Suburban Area, Medfield, MA
PI: Mary Ellen Foti, MD
Abstract (as described by Project staff)
A demonstration and research project, we seek to learn about a mentally ill person’s capacity to select health care proxy and their preferences for end-of-life care. Our identified objectives include:
Brief Synopsis of Program Characteristics, Successes and Challenges
The Metropolitan Suburban Area (MSA) is one of six designated service provision areas of the Massachusetts Department of Mental Health. The Area provides mental health services in the metropolitan Boston area to approximately three thousand people, 2,100 of whom have been determined to be seriously and persistently mentally ill, and 1,500 of whom receive services through the Area’s case management service delivery system. Between one-quarter and one-third of the case managed clients (375-500) suffer from co-morbid medical diseases, which require active medical follow-up (e.g., AIDS, chronic obstructive pulmonary disease, cardiovascular disorders, cancer, diabetes, dementias, and other progressive illnesses). It is these seriously and persistently mentally ill (SPMI) patients with co-morbid conditions that are focus of End-of-Life Care for Persons with Serious Mental Illness’sefforts. Mental health services are provided to these patients in a variety of settings: a state psychiatric hospital, inpatient mental health center, day hospital, residential beds, outpatient and outreach mental health clinics, clubhouses, supported employment programs, day rehabilitation programs, and mental health case management sites.
MSA staff felt compelled to apply for funding through Promoting Excellence in End-of-Life Care out of a recognition that, while these patients with co-morbid conditions were facing end-of-life issues, there was not a cohesive interface between their medical care and their mental health care, and there was little knowledge of their preferences. This recognition set the agenda for the project: to develop the tools to determine capacity for selecting health care proxies and to assess preferences; to incorporate that information routinely into the patients’ plans of care, and to fuse a connection between end-of-life care providers and mental health providers.
Principal investigator Mary Ellen Foti, MD, a psychiatrist and MSA medical director, enlisted the assistance of Paul Applebaum, PhD, creator of the MacCAT-T (an assessment tool to assess treatment competence) to design a tool to assess the ability of seriously mentally ill patients to select a health care proxy. The new tool, called the MacCAT-P (P is for ‘proxy’) has now been developed and is in use to measure the competency of an SPMI client to participate in advance care planning.
A Health Care Preference Questionnaire (HCPQ) has also been developed, tested and incorporated into the Individual Service Plans of the clients participating in the project. Project staff collected baseline data on the number of SPMI patients in their system with advance care planning documents and health care proxies and is monitoring the impact of the project on those numbers.
An important component of End-of-Life Care for Persons with Serious Mental Illness is an unprecedented mental health-hospice partnership, called the Intensive Health Network (IHN). As stated by project staff, the IHN has a primary mission to act as a vehicle for organic, cultural changes in the way mental health providers and end-of-life care providers view their roles and responsibilities. The IHN consists of staff from local hospices and from various facilities within the MSA system that meet regularly to provide cross training about their respective disciplines. As a result, mental health workers have gained an understanding of issues of death and dying and palliative care, as well as an awareness of the services available through hospice. Hospice workers have become more knowledgeable about issues associated with mental illness and, as a result, express diminished resistance to caring for this population. Project staff reports that, thanks to the IHN, they are more comfortable encouraging clients to stay in their residential placements at the end of life, due to the cadre of residential staff now trained to provide psychological support to the dying client and to the availability of receptive in-home hospice caregivers.
Exportable Products/Tools
Policy Issues
Through Dr. Foti’s leadership position within the American Psychiatric Association, a resolution was presented proposing adoption of core principles of end-of-life care. APA is now developing training for interdisciplinary caring of terminal patients for residents and early career psychiatrists. Dr. Foti reports that there is increased recognition at APA of the ethical mandates to assess patients’ preferences, values and proxy selection as part of care for any mentally ill patient with medical conditions.
This project is forging new territory in regard to health care proxies and advance care planning for SPMI patients, an area heavily influenced by legal and political challenges. A Health Care Preferences Advisory Committee has been formed and is working with Massachusetts Department of Mental Health policy analysts to address the issues.
A significant portion of the patients in the MSA system are on Medicaid, making Medicaid the insurer who holds the financial risk. As such, state Medicaid leaders should be made well aware of this program and its potential fiscal advantages.
Communications
Project staff is using their $15,000 communications allocation from the NPO to develop a manual entitled “I Did It My Way,” which will provide guidance to mentally ill patients in selecting health care proxies.
Generalizing the Model
The Metro Suburban Area is one of six regions in the state’s mental health network. The opportunity obviously exists to roll out this project into those remaining areas and to use the roll-out as a means of testing whether another regional mental health department can implement the model.
National interest is developing around the MacCAT-P: an institution in Maryland is using the tool and, at the University of Washington, the tool is being used to develop a mental health advance directive. Project staff feels the next phase is to establish the validity and reliability of the instrument…an endeavor too large to have been attempted with their existing grant.
Words of Wisdom from the Project
When project staff was asked to name three things that have been critical to their success, they replied:
Conversely, they were asked to describe three problems or mistakes that others should avoid: