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

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Client Art
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"Defeat the fear of death and welcome the death of fear."
G. Gordon Liddy

Great quote and a very simplistic piece of artwork; tanned windows to show there is light in the house of death; this is what Hospice brings - light and tranquility to the family and to the dying person.
The project's research was designed to provide data about the advance directive choices and capacities of persons with serious mental illness. The project's research was designed to provide data about the advance directive choices and capacities of persons with serious mental illness.
The team hopes that this data will provide health care systems a framework for the development of advance care guidelines and procedures for this (and other) special populations.
On this page:
arrow Healthcare Preferences Questionnaire (HCPQ)
arrow Competency Assessment Tool - Health Care Proxy (CAT-HCP)
arrow The Deceased Client Profile (DCP)
arrow Drug Interactions: Psychotropics & Narcotic Analgesics
arrow DRAFT Guidelines for End-of-Life Care of Patients with Serious Mental Illness
Healthcare Preferences Questionnaire (HCPQ)

The Healthcare Preferences Questionnaire (HCPQ) provides information about both the advance care planning and end-of-life care preferences of persons with serious mental illness. Additionally, we learned about their emotional resilience in thinking and talking about death and dying.

This 21-page survey instrument includes:
  • The "SF-12", a standard health status research questionnaire;
  • Elements derived from the American Health Decisions publication;
  • The Quest to Die with DignityŠ;
  • Three original vignettes describing decision points in critical health care situations (pain, paralysis, and psychiatric emergency);
  • An assessment of the patient's spiritual beliefs; and
  • Queries regarding emotional discomfort experienced while completing the questionnaire.


  • The HCPQ provides insights into client perceptions regarding health care options, health care decisions, and acceptable treatment modalities. The collection and analysis of data pertaining to the end-of-life care preferences of persons with mental illness will lay the foundation for future studies of medical and psychiatric advance care planning as well as the cost and quality parameters of terminal illness management in this population.

    arrow Health Preferences Questionnaire - Coversheet
    For more information about the Healthcare Preferences Questionnaire (HCPQ) contact:

    Mary Ellen Foti, M.D.
    Principal Investigator
    [email protected]

    or
    Melanie Merriman, Ph.D.
    [email protected]


    Look for publications coming soon on the HCPQ results from a sample of 150 community-based mentally ill clients of the Massachusetts Department of Mental Health (MA-DMH).
    The Competency Assessment Tool - Health Care Proxy
    (CAT-HCP)


    The Competency Assessment Tool (MacCAT) is a set of instruments with demonstrated reliability and validity to measure decisional capacity.
    These instruments guide an interview that assesses a person's capacity to understand basic information; to appreciate its relevance to the person's own situation; to reason through the risks, benefits, and consequences of various alternatives; and to communicate a choice.
    The project PI and Co-Investigators (Philip Candilis, MD and Paul S. Appelbaum, MD) developed a semi-structured interview using the MacCAT format to specifically evaluate a subject's capacity to select a health care agent. The interview is called the CAT-Health Care Proxy or CAT-HCP.

    For more information about the Competency Assessment Tool - Health Care Proxy (CAT-HCP) contact:

    Mary Ellen Foti, M.D.
    Principal Investigator
    [email protected]
    The Deceased Client Profile (DCP)

    The Deceased Client Profile (DCP) was developed after project staff discovered that available MA-DMH mortality data was insufficient for the project's quality assessment and improvement activities.
    The DCP records the manner and cause of death, medical and psychiatric diagnoses, comorbid conditions, lifestyle issues such as exercise, nutrition and smoking, medications, medical visit history, location of death, hospice/palliative care involvement, and advance directives.
    The DCP is completed within 2 weeks of every death by a DMH case manager or outpatient practitioner knowledgeable about the patient. The individual profiles are data based and aggregated for annual reports.
    Recognizing the value of the DCP in the evaluation of end-of-life care services and in planning long-range wellness initiatives, the MA-DMH Area Medical Directors have adopted its use for all MA-DMH patient deaths.
    The downloads on the right are provided as templates for useful data collection methodology for any special population.

    The Deceased Client Profile (DCP)
    (Three downloads available)
    Drug Interactions: Psychotropics & Narcotic Analgesics

    This two-page chart captures information on frequently used medications for palliative care and their potential for pharmacological interaction with various commonly used psychiatric medications.


    arrow Interactions: Psychotropics & Narcotic Analgesics
    (Adobe PDF download available)
    DRAFT Guidelines for End-of-Life Care of Patients with Serious Mental Illness - Work in Progress - Jim Hawkins, MD and Mary Ellen Foti, MD

    These draft guidelines are designed to aid psychiatrists/mental health providers who care for seriously mentally ill patients provide quality end-of-life care to their patients if/when they develop terminal illnesses.
    The guidelines advocate allowing these patients to die in the setting most familiar to them, should they choose to.
    These settings include: state-run mental health institutions (Institutions of Mental Disease -IMD's), transitional or long-term care facilities, skilled nursing facilities, group homes, supported housing, as well as other settings for people with serious mental illness such as long-term VA units or Public Health Hospitals, etc.

    There are two sets of guidelines:
    1. for the care of the seriously mentally ill terminally ill person, and
    2. for the institution(s) providing the care.

    We welcome your input. You are invited to download the guidelines for review and contact us with your comments, suggestions, and questions.

    arrow DRAFT Guidelines for End-of-Life Care of Patients with Serious Mental Illness - Work in Progress
    - PDF format (80 Kb)

    The authors invite your comments and ideas regarding these guidelines. Please email input to:
    Dr. Jim Hawkins
    [email protected]

    Interactions: Psychotropics & Narcotic Analgesics
    The Deceased Client Profile (DCP)
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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 at www.promotingexcellence.org/mentalillness/