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

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State Hospital Patient Care Policy on Care at the End of Life

This policy statement is an example of a standing committee standards and procedures for end-of-life care in an independent mental health institution.

Approval Signatures (dated):

Chief Operating Officer:
Medical Director:
Director of Nurses:
Director of Clinical & Rehabilitation Services:
(Other - specific to your institution):

Effective Date:
Renewal Date:
Review period:
Renewal Date:


Institution Policies and Procedure Manual


To establish a standard for care at the end-of-life for patients at (your institution ). This will include assessment of their illness, interventions and referral services for palliative care and counseling for patients and/or families/guardians. This policy will also establish a standard for staff development and training regarding end-of- life care for patients with chronic mental illness.

This policy seeks to ensure that patients at (your institution) are treated with respect, dignity and sensitivity through the final phase of their life. This includes availability of services one would normally receive in the community in order to be kept comfortable among familiar surroundings, family, friends and staff during his/her final days.

(Your institution)'s administration supports the concept and philosophy of palliative care to provide resources to persons with chronic mental illness and a terminal illness, and to accommodate the person's end-of-life wishes, care and dignity by:
  • Providing appropriate treatment for any primary or secondary symptoms, according to the wishes of the patient or surrogate decision maker;
  • Managing pain intensively aggressively and effectively;
  • Respecting patient's values, religion and philosophy;
  • Involving the patient, and when appropriate, the family and/or guardian, in all aspects of care;
  • Responding to the psychological, social, emotional, spiritual and cultural concerns of the patient and family;
  • Sensitively addressing such issues as autopsy or organ donation.
This policy is broad and flexible in accordance with the right to individualized end- of-life care. Appropriate internal and external services needed to meet the needs of individual patients and their families within the context of the patient's psychiatric diagnosis, legal status, abilities, wishes and resources, will be determined on a case-by-case basis.


All (your institution) patients with a terminal illness will have the opportunity to exercise their right to choose how to live out his/her final days with support from (your institution) staff.


End-of-Life Care: Care provided at the end of life.

Terminal Illness: A debilitating condition which is medically progressive, incurable and which can be expected to cause death.

Palliative Care: The comprehensive management of physical, psychological, social, spiritual and existential needs of patients, in particular those with incurable, progressive illnesses, by an interdisciplinary team, with the goal of improving the quality of life. Palliative care affirms life and regards dying as a natural process that is a profoundly personal experience for the individual and family. Supportive care extends to family and those closest to the patient.

Hospice: As currently used in the United States, hospice refers to a specific, programmatic model, reimbursed by Medicare, for delivering palliative care support services, resources and medications to patients who are terminally ill. The majority of hospice services are provided in the home but hospice services are also available to patients who reside in institutions. Hospice care, therefore, constitutes a subset of palliative care.

Family: For purposes of this policy, family is defined as relatives as well as those with whom the patient has an established and close relationship, including familiar caregivers and fellow patients.


Prior to the 1970's, terminally ill persons died in the hospital often alone and in pain. Frequently, their desire to die in their own home among familiar people and surroundings were not respected. With the development of palliative care and hospice, persons today have services available to live out their life with respect, dignity, free from pain, in their own nurturing environment that promotes quality of life until the end. This approach to care focuses on the whole person - body, mind and spirit, and those who comprise their "family" - surrounded by people and things they care about in their own familiar environment while care and comfort is provided during a terminal illness.
Patients at (your institution) recognize that (your institution) is their home and staff that has cared for them is their significant support system. The standards for end-of-life care at (your institution) will enable persons with chronic mental illness to experience the same care and services available to persons in the community.


A. Patients at (your institution) who have been diagnosed with a terminal illness, regardless of diagnoses, will have their preferences for care at the end of life respected and receive optimal individualized end-of-life care.

B. For the purpose of this policy, persons with a chronic mental illness and a terminal disease will be afforded the option and choice to receive hospice services in their own environment as their right as a patient, based on their eligibility subject to the regulations of the Medicare Act and under (cite specific state regulation here ).


This policy acknowledges the patient's right to informed care through the end of life with an individualized plan of care involving the patient, family, guardian, healthcare providers and other caregivers. The focus is to provide palliative care including state-of-the-art pain and symptom management and psychosocial support, while the person may remain in his/her own environment living his/her final days among family and friends. This care allows respect for each individual's unique qualities, values, culture, faith, spirituality and lifestyle with openness and acceptance of their end-of-life requests. This applies whether the patient, or his/her surrogate, chooses to continue intensive efforts to prolong life, or chooses to forgo further life-extending care.


The roles and services provided by psychiatry, primary care medicine, nursing, mental health workers, pastoral service, social work and rehabilitation specialists will remain unchanged. The role of the consulting outside hospice agency or affiliated palliative care program regarding end-of-life care will be to provide advice on services and recommendations of care to be delivered by existing (your institution) staff.


A multi-disciplinary End-of-Life Care Committee will be established.

A. Reporting Mechanism
The End-of-Life Care Committee will report to the (Director/VP for Clinical Services).

B. Composition and Structure
The committee will include representation from psychiatry, primary care medicine, nursing, mental health workers, pastoral service, social work and rehabilitation services. Representatives will be expected to serve a minimum of two years with the Chair rotating on an annual basis. Representatives from each discipline will be replaced upon resignation.

C. Charge of the End-of-Life Committee
The committee will provide consultation in the development of further policies and procedures pertaining to end-of-life care at (your institution). The committee will meet quarterly to discuss up-dated end-of-life care information and review current and/or potential hospice cases.

D. Responsibilities of Committee Members
Committee members will seek continuing education regarding end-of-life care and in turn, provide advice, support and education to colleagues and hospital staff regarding end-of-life care. This committee will act as a resource to facilitate a linkage between internal and external end-of-life services for patients who are terminally ill.

Inservice training will be given by Committee Members, other identified experts, and the hospice agency or affiliated palliative care program to (your institution) staff. In addition, the hospice agency or affiliated palliative care program will provide consultations on a case-by-case basis to ensure individualized care and services. Yearly grand rounds will present end-of-life care updates in to all (your institution) staff members.


Patients at (your institution) will be made aware of their options for end-of -life care when they have been diagnosed with a terminal illness. Patients and their families/guardians will be given all treatment and service options and be allowed time to plan and participate in their end-of-life care.

On this page:
arrow State Hospital Patient Care Policy on Care at the End of Life
arrow DRAFT Guidelines for End-of-Life Care of Patients with Serious Mental Illness
arrow Medicare/Medicaid Reimbursement

State Hospital Patient Care Policy on Care at the End of Life
- Print Version - PDF format (136 Kb)

For more information on the administrative issues that a State Hospital Patient Care Policy on Care at the End of Life generates, contact:

Mr. Steve Scheibel
Past Chief Operating Officer
Westborough State Hospital
Westborough, MA
[email protected]

For information regarding the provision of medical services to a terminally ill psychiatric patient in a state psychiatric hospital setting, contact:

Dr. Katherine Fong
Chief of Medical Care Services
Westborough State Hospital
Westborough, MA
[email protected]

For information on Standing Committees supporting EOL Care for the Seriously Mentally Ill in a facility contact:

Dr. Ken Mitchell
Medical Director
Westborough State Hospital
[email protected]
Dr. Jyoti Patel
Chief of Psychiatry
Westborough State Hospital
[email protected]

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.
See these draft guidelines in the Clinical Tools area of this Web site.

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]

Funding hospice/palliative care in a state mental hospital or similar facility: Information from CMS 10-2002 for MEDICARE
Please note: CMS has not addressed this formally in any manual guidance.

Medicare hospice regulations do not define the term "home". It is not uncommon for individuals to "reside" in an assisted living facility, nursing home, or other more institutional setting and receive hospice care. While the person is residing in the facility and receiving hospice, Medicare would pay the hospice provider the appropriate home care rate.
Contracting with a State psychiatric inpatient facility for the provision of hospice services to patients who would remain a patient at the facility: It is conceivable that an individual could "reside" in a psychiatric inpatient facility and receive hospice care. If that were the case the following would apply:
1. the hospital stay is no longer a Medicare stay
2. the cores services must be provided by the hospice, and
3. the hospital has to agree to the peimacyprimacy of the hospice plan of treatment ( which takes into account the mental illness) and enter into a contractual agreement with the hospice per 42 CFR 418.56, and
4. there is an appropriate process under which the patient or his/her representative made the necessary election.

Funding hospice/palliative care in a state mental hospital or similar facility: Information from CMS 10-2002 for MEDICAID

CMS has reported that the same ideology (as above, with respect to Medicare) would apply to Medicaid. It is recommended that you consult with CMS directly as there is no concrete guidance regarding this issue. We have learned that CMS has not been asked about this issue previously and therefore has not created specific regulations to apply to it.

arrow For more information regarding Medicare/Medicaid reimbursements, contact the Medicare /Medicaid management division of CMS at

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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