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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.
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On this page:
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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.
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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.
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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."
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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.
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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:
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- Interactions:
Psychotropics & Narcotic Analgesics
This chart simplifies pharmacological interactions between frequently used psychiatric medications and those used for pain management.
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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.
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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 |
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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
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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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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
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