Massachusetts Project on End-of-life Care for Persons With Serious Mental Illness

Massachusetts Department of Mental Health : Do It Your Way : About the Project

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Confused Lady
It's an elderly lady who's confused about her health. She hears about the Intensive Healthcare Network and sees hope for her future.
This is a multifaceted grant project of the Massachusetts Department of Mental Health, Metro Suburban Area. It is supported by a grant from The Robert Wood Johnson Foundation's Promoting Excellence in the End of Life Care National Program Office. Mary Ellen Foti, M.D., psychiatrist and MA Department of Mental Health, Metro Suburban Area Medical Director, is the principle investigator.

The project was designed to build relationships across two systems of care: mental health and hospice/palliative care. This project partnership between the mental health care system and the end-of-life care system formed the Intensive Healthcare Network (IHN).

The goal of the IHN is to educate and inform consumers, caregivers, and the public about the unique advance care needs of persons with serious mental illness during as well as at the end of their lives, and how these special needs can be met. IHN also strives to provide clients opportunities to express their opinions and preferences about their care, as well as contributing new knowledge to the fields of mental health and end-of-life care (see Clinical Tools).

The project also extended hospice-style care to dying people with severe psychiatric illness, who resided in group residential settings as well as state mental health facilities.

The network's team worked with researchers at the University of Massachusetts and the New Hampshire-Dartmouth Research Center to design interventions and tools to evaluate the capacity of patients to make advance care decisions and to complete advance directives. These documents can become part of a patient's treatment plan and case management record. Thus important guidelines and directions can be available for family/guardians/proxy to make healthcare decisions in the event that the client becomes unable to make or communicate them his/herself.

We have learned that the proactive process of gathering information about the medical and psychiatric preferences of persons with serious mental illness cultivates communication and collaboration between them and their health care providers.

In addition to collaborating on individual cases, the IHN team developed a unique professional "conversation" through cross-system education, training, and outreach. This cross-system effort was designed to support a continuing mental health / end-of-life care collaboration. Hospice staff gain competence and comfort when working with people who are seriously mentally ill and mental-health clinicians have opportunities to become familiar with hospice/palliative care approaches to providing high-quality end-of-life care.

The project's overarching goal is to establish "best practices" in end-of-life care for people with serious and persistent mental illness. The Massachusetts Department of Mental Health (MA DMH) defines "serious and persistent" mental illness as a mental illness lasting 6 months or longer that results in significant functional disability.
On this page:
arrow Policy Issues
arrow Exportable Products/Tools
arrow Related Articles
arrow Some Intensive Healthcare Network (IHN) Comments and Feedback
Policy Issues

I. American Psychiatric Association
Through Dr. Foti's leadership position within the American Psychiatric Association, a resolution was presented proposing adoption of the core principles of end-of-life care.

This position statement, similar to those endorsed by other medical specialty societies (see www.milbank.org/endoflife/index) was approved by The American Psychiatric Association's (APA) Board of Trustees in June, 2001. In addition, the APA has formally accepted "Annotations to the Core Principles" specifically designed for psychiatric practitioners.

There is increased recognition at the APA of the ethical/legal/and regulatory mandates to assess patients' preferences, values and proxy selection as an important component of care for any mentally ill patient.


American Psychiatric Association Position Statement on End-of-Life Care
- PDF format (12.5 Kb)
II. MA Department of Mental Health (MA DMH)
Supported by the MA DMH Commissioner, project leadership participate in an ongoing ad hoc task force on end-of-life issues. The task force developed a policy statement for the MA DMH on Organ Donation, and is currently working on a Health Care Proxy Policy.

Recognizing the importance of forging new territory regarding the utilization of health care proxies and advance care planning for persons with serious mental illness, the task force crafted a position statement for the MA DMH leadership that was formally accepted in September, 2002.



MA DMH Position statement re Advance Directives:
"The MA Department of Mental Health supports clients' participation in all aspects of their health care.
Therefore, DMH encourages clients to express their wishes about medical, psychiatric and end-of-life care through participation in treatment planning and the use of advance directives."


III. Legal Issues
In addition to the common legal complexities regarding the making of an advance directive and having it followed in practice, certain additional difficulties exist for persons with serious mental illness. For example, a person with mental illness who has a guardian cannot legally make a health care proxy in MA even if they are fully capable to do so. Appreciating the legal issues surrounding each person's circumstances and thoughtfully creating a workable plan demands the active collaboration of the client and his/her treatment team.

Contact for more information:

Attorney Robert Fleischner
[email protected]
Exportable Products/Tools

The team at Massachusetts Department of Mental Health has developed a number of tools that are exportable for use in other programs.
Some are made available on this Web site while further information on the others can be obtained from Dr. Foti directly:

arrow Clinical Tools
arrow Teaching Resources
arrow "Do It Your Way"- Consumer Information Brochure
  • Interactions: Psychotropics & Narcotic Analgesics
    This chart simplifies pharmacological interactions between frequently used psychiatric medications and those used for pain management.
  • Competence Assessment Tool-Health Care Proxy
    (CAT-HCP)

    A new methodology piloted and tested by this project to assess the capacities of persons with serious mental illness to select a health care proxy.
  • The HealthCare Preferences Questionnaire
    A questionnaire used to learn about the health care preferences of 150 persons with serious mental illness living in the community.
  • The Deceased Client Profile (DCP) with companion DCP Database and Database Training Manual
    These instruments were developed by the project team to systematically study the causes of death, comorbidities, and end-of-life care services provided to seriously mentally ill persons in MA.
  • Sample of a State Mental Hospital's End-of-Life Care Policy
    This committee was developed to provide guidance to medical, psychiatric, and administrative personnel who support the preference of a psychiatric patient to remain in the state hospital though the terminal phase of his/her life.
  • "Do It Your Way"
    A Consumer Information Brochure describing the critical components of advance care planning in MA.
  • REAPŠ Readiness to Engage in Advance Care Planning Toolset
    Background, references, and short form assessment of a person's readiness to made an advance care plan. Applies the "stages of change" model to advance care planning.
  • Annotated PowerPoint Curriculum for Mental Health Providers
    A Curriculum explaining the origins of the end-of-life care movement, the tenets of advance care planning, and how to work with terminally ill mentally ill clients.
  • Educational Toolkit for Hospice and Palliative Care Providers
    A Toolkit emphasizing signs and symptoms of various psychiatric illnesses, methods of communication with psychiatric patients, how to describe bad news to a psychiatrically ill person, and information about psychiatric emergencies in the terminally ill.
  • Healthcare Preferences Workbook - Soon to Come
    A "Do It Your Way" preferences workbook to document the advance care choices, attitudes, and opinions of persons with serious mental illness.

Articles

For a detailed account of this demonstration project and its findings, look for:
  • Foti ME: "Do It Your Way": A Demonstration Project on End-of-Life Care for Persons with Serious Mental Illness, Journal of Palliative Medicine, vol 6 (4) August, 2003

    Other related publication:
  • Candilis, P, Foti, ME "Case Presentation: End-of-Life Care and Mental Illness: The of Ms. W." Journal of Pain and Symptom Management, Vol. 18, No.6, December 1999

  • Some Intensive Healthcare Network (IHN) Comments and Feedback
    Example of one of many "thank you's" from family groups:

    "Dear Dr. Foti,
    Thank you very much for speaking to our affiliate members this evening. It is the generosity of teams like yours who give the time to help us increase the information families and their loved ones need to make life better for all concerned.
    We all appreciate your service."
    Sincerely,
    Marguerite Farnsworth,
    Eileen O'Toole, President
    Jeanne Acerra, Vice President
    Ruth Sterae, Secretary
    Mitchell Drucker, Treasurer
    Thank you from a Hospice Worker who participated in the Intensive Healthcare Network(IHN) and in a site visit:

    "Dr. Foti, Sally, & Meredith:
    Thank you so much for the opportunity to be involved with your exciting program. I really enjoyed each and every session, and will really miss being a part of it. Also, thank you for inviting me to the luncheon meeting with the representatives from the RWJ Foundation. They were a pleasant group, and were obviously impressed with the IHN program.
    I'm sure you will have continued success with the program and the nurse who will now attend from our Hospice Agency is Leslie B.
    Thanks again for everything."
    Anita

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    PEELC This information is provided by the Massachusetts Department of Mental Health. End-of-Life Care for Persons with Serious Mental Illness is a multi-faceted project supported by a grant from Promoting Excellence In End-of-Life Care, A National Program Office of the Robert Wood Johnson Foundation. Visit the main Web site