End-of-Life Care for Persons with Serious Mental Illness Mary Ellen Foti, MD The Curriculum for Mental Health Providers Sally Neylan Okun, RN, MMHS Carol Wogrin, RN, PsyD Yvonne J. Corbeil September, 2003
Supported by a grant from the Robert Wood Johnson Foundation A Project of the MA Department of Mental Health Metro Suburban Area End-of-Life Care for Persons with Serious Objectives This Presentation will: Describe the current state of dying in America Introduce key concepts of End-of-Life Care (EOL)
Review the principles of Bereavement Introduce the challenges of providing quality EOL Care for persons with Serious Mental Illness (SMI) Provide resources for further learning How Americans Died in the Past Early 1900s Average life expectancy 50 years, high childhood mortality, few adults lived into their 60s Death common from infectious disease and
accidents Medicine focused on care and comfort Sick cared for at home Death - a tangible, common part daily life
Medicines Shift in Focus Improvements in sanitation, public health, and antibiotics results in longer lives. Average life expectancy increases to 76 years. (73 men, 79 women). Death becomes hidden and viewed as the Enemy. Medicine adopts a sense of failure when the patient died. Dying in America Today
Modern Health Care: Few cures Lots of chronic illness, prolonging the dying process Hercules fighting the Angel of Death How We Die <10% sudden, unexpected >90% protracted illness with differing
trajectories Sudden Death, Unexpected Cause Health Status < 10%, MI, Accident, etc. Death Time Steady Decline, Short Terminal Phase Slow Decline,
Periodic Crises, Sudden Death The SUPPORT Study A Controlled Trial to Improve Care of Seriously Ill Hospitalized Adults Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments S
U P P JAMA 1995;274:1591-1598 O R T Dying Experience of Older
Patients SUPPORT Study Most elderly and seriously ill patients died in acute care hospitals, even if they wanted to be home Pain and other symptoms were common and distressing to patients. Family members believed that patients preferred comfort measures only, but high tech lifesustaining treatments were used anyway. Ann Intern Med 1997;126:97-106 Pain
& Suffering People are afraid of dying in pain. People are afraid of dying alone. Uncontrolled pain and loss of control are the primary source of fear and fantasies among the terminally ill. These fears fuel suicidal ideation and attempts. Patients want to die at home... 90% report wanting to die at home But deaths in institutions are
increasing: 1949 --- 50% 1958 --- 61% 1980 to present --- 74% Barriers to dying at home: lack of familiarity with the dying process lack of adequate supports
lack of insurance coverage Gaps between Fears and Desires Patients are afraid of Patients desire to die
not on a ventilator with family/friends in comfort at home dying in an institution dying on a machine dying in discomfort being a burden Improving Care at the End of Life End-of-Life Care Palliative Care The continuum of
prolonging life while supporting a death with dignity End-of-Life Care refers to the reliable, skillful, and supportive care of people with advanced, potentially fatal illnesses and those close to them. (Institute of Medicine, 1997) Palliative Care refers to the comprehensive management of physical, psychological, social, spiritual and existential needs of patients, in particular those with incurable, progressive illnesses. 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. Palliative Care Palliative Care Affirms life, regards dying as a normal process Neither hastens nor postpones death Provides relief from pain, other symptoms Integrates psychological and spiritual care Interdisciplinary team approach Support system for the family during illness and into bereavement WHO 1990 The
Continuum of End-of-Life 1.Curative therapy Care 2. 2. Life Life Prolonging Prolonging Bereavement 3. Palliative Care Presentation/Dx
Presentation/Dx 3. Symptom control supportive care Hospice Death Death How to Help when Someone has died, or The Principles of Bereavement Grappling with Grief:
Is about finding new ways of holding on to an important relationship. Is about reworking the people we love into our lives in new and different ways after they die. Is not about moving on or letting go. Looking for loved one The Principles of Bereavement The relationship is now
entirely in our internal world, rather than in the external world. Life has changed, and our sense of self must be reconstructed. Assumptions about the world can be shattered (for example - that the people we depend on will always be there, or that life is predictable.) What was, still is
Grief, what it can look like Physical sleep disruptions, decreased appetite, tightness in the throat/chest, palpitations, shortness of breath, dry mouth, nervous tension Emotional shock and disbelief, sadness, anger, guilt, fear, anxiety Psychological concentration, focusing, and memory problems Spiritual sense of meaninglessness, hopelessness and helplessness, questioning prior religious beliefs, anger at God
Support for the grieving person (Dos and ) a bereaved Although you are notDon'ts able to take away persons pain, you are able to help them. DO: be available to listen to their story over and over again remember that grieving is a process that can take a very long time know that the work of grieving takes time be willing to listen and to try and understand their experience as they struggle to develop a new,
coherent, story line for their life that no longer includes this important person in their external world. Support for the grieving person (Dos and Don'ts) contd Supporting someone who is grieving over time can be difficult because you cant change the cause of their pain and it is hard to tolerate feeling helpless. DONT: Try to minimize the persons feelings by offering platitudes such as hes in a better place, or God only gives people what they can handle. try to explain away their feelings, her suffering is over, time heals all wounds, or you need to be strong for
Remember that Change always involves loss Grief follows all losses, not only death Recent loss conjures up
feelings from past losses Death heightens awareness of our own vulnerability and mortality Other stressors will exacerbate the intensity of the grief process Sad Angel Grief Depression no distorted sense of self
sense of self worthlessness guilt is focused on the loss often stated as I should have, If only I had guilt related to feelings of personal inadequacy or badness pain is experienced as related to the loss rather than as meaningless or as part of a generalized hopelessness emotional pain is generalized and
experienced as meaningless pervasive sense of hopelessness and helplessness preoccupation with the deceased preoccupation with self and own rather than self pain Grief Depression some fluctuation of mood, and able to respond to social support
little fluctuation in mood, little response to social supports any thoughts of suicide are related to wishes to join the deceased or difficulty believing that life will feel good again without the deceased; actual intent, plan or gestures are very rare suicidal ideation common, related to hopelessness about the future, pain and anger; plans and gestures common
Risk Factors for Complicated Mourning Prior history of depression or other mental illness Multiple losses Sudden or traumatic death of the loved one an ambivalent relationship with the loved one Red flags when to get help Suicidal ideation or plan Withdrawal from social supports Marked behavioral or personality changes
Alcohol or substance abuse Risk taking behavior Consumers speak... People dont realize how many losses consumers have. A lot of our friends die. Our friends are our family. We need help to deal with that.* End-of-Life Care for Persons SMI
Special Challenges Little is known about end-of-life care for persons with SMI Specific literature scarce Tools not tested in this population Advance Care Planning is complicated Capacity assessment issues Legal guardianship issues Shortage of persons to designate as Health Care Proxies with Consumers speak I worry about what kind of death Ill have.
Will people know if Im psychotic or just think Im delirious? Who will know when I need my medications?* Palliative Care for Persons with Serious Mental Illness Family may be other clients, staff, members of the mental health service provision team Needs to occur at home Palliative Care
for Persons with Serious Mental Illness Pain, psychological and spiritual care is addressed Requires an interdisciplinary team approach Support system for the family during illness and into bereavement Consumers speak... I know my death will be medically complicated because of all the medications Ive been on.
I already have irreversible kidney damage from Lithium.* How to Help Persons with SMI Prepare for the Future Document Preferences for End-of-Life Care Assist in their process to complete an advance care directive Use the TOOLS described next Assessment Tools
The Healthcare Preferences Questionnaire (HCPQ) Competence Assessment Tool Health Care Proxy (CAT-HCP) Healthcare Preferences Questionnaire (HPQ) Modifies a tool from Quest to Die with Dignity report Seeks to learn about values, attitudes and opinions of persons with SMI about EOL Healthcare Preferences Workbook
Watch for a publication on Results of the Health Care Preferences Questionnaire Remember that Persons with Serious Mental Illness have Preferences and can articulate them Download the current version of the Advance Directives section of our Do It Your Way Medical and Psychiatric Care Preferences Workbook Contact us for the entire workbook. CAT-HCP (Health Care Proxy) The CAT-HCP is a standardized method to assess a
persons capacity to select a health care proxy It is a modification of other Capacity Instruments developed to assess competence: to consent to Treatment to participate in Research to participate in forensic assessments The CAT-HCP an Overview
Do people with serious mental illness have: The Capacity to Understand and Benefits Risks and Selecting a
Appreciate the of Healthcare Proxy??? Toolkit for Innovation and Improvement Do It Your Way Patient Guidance Brochure and Preferences Workbook The Healthcare Preferences Questionnaire (HCPQ) CAT-HCP (Capacity to select a health care agent)
The Deceased Client Profile (DCP) Available at: www.promotingexcellence.org What you can do As Mental Health Provider Become aware of Palliative Care and Hospice (PC & H) programs serving your area (go to www.nhpco.org) Invite local PC & H providers to present Education Programs in your facility on the: scope of their services eligibility criteria for referrals Develop a collaborating working relationship for delivering end-of-life care to persons with serious mental illness in your community
In Gods Hands Compassion is most important and as long as ones in good hands it doesnt matter if it is family. It can be anyone as long as love leads. Carrie Phipps EOL Resources available Online PEELC - Promoting Excellence in End-of-Life Care www.promotingexcellence.org
EPEC Project - Education for Physicians on End-of-Life Care www.EPEC.net EPERC - End-of Life/Palliative Education Resource Center www.eperc.mcw.edu/start.cfm CAPC - Center to Advance Palliative Care www.capcmssm.org/ ELNEC End of Life Nursing Education Consortium
www.okabcd.org/ELNEC.htm EOL Resources available Online AAHPM - American Academy of Hospice and Palliative Medicine www.aahpm.org Cont NHPCO - National Hospice and Palliative Care
IICN - Inter Institutional Collaborating Network on Organization www.nhpco.org End-of-Life Care www.growthhouse.org/iicn.html City of Hope, National Medical Center http://mayday.coh.org Toolkit of Instruments To Measure End-of-Life Care
www.chcr.brown.edu/pcoc/toolkit.htm Online Mental Health Resources NMHA - National Mental Health Association www.nmha.org APA - American Psychiatric Association www.psych.org NAMI - National Alliance for the Mentally Ill www.nami.org National Mental Health Consumers' Self-Help Clearinghouse - www.mhselfhelp.org NASMHPD - National Association of State Mental Health Program Directors www.nasmhpd.org
Online Bereavement Resources Association for Death Education and Counseling, www.adec.org Grief Net. Grief Network www.griefnet.org NCDE - National Center for Death Education www.mountida.edu/ncde Gift From Within www.giftfromwithin.org SA\VE: Suicide Awareness \ Voices of Education www.save.org
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