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The Tools of Recovery
The Tools of Recovery Archive
Living and Dying with Mental Illness
People living with severe and persistent mental illness are likely to come to the end of their lives with less economic resources and fewer social supports than the average American. As a result, facing terminal illness, they more likely to face great difficulties in piecing together a positive, caretaking network, less likely to have the option of dying at home, and consequently more likely to find themselves dependent on institutional care.
As a society, we have largely closed our eyes both to the problems of dying and to the problems of living with mental illness. The problems of dying with mental illness have been almost totally ignored. Little has been written about end-of-life care for people living and dying with mental illness.
Where do people living with mental illness die? How do people living with mental illness die? We have some suspicions. Either because the physical, psychological and spiritual challenges of impending death triggers a recurrence of psychiatric symptoms (it has been suggested that everyone has moments of psychosis as death approaches) or because institutional caretakers anticipate "problems" with people who have previously been labeled mentally ill, people recovering from mental illness are too often shuffled away to face approaching death in psychiatric hospitals or in congregate care facilities for the mentally ill. There they are treated not as dying people who are facing death with the added handicap of mental illness but as psychiatric patients who impose on staff the additional burden of "unusual" medical needs. At the last moment, they are often hurried off the unit and into an ambulance in an effort to insure that death occurs somewhere else.
We have our suspicions, but we need facts. If you have a story about the end-of-life experience of a person living with mental illness, we hope you will share that story. We hope to collect as many stories as possible in order to begin to document the need as well as what works and what doesn't. We hope you will share stories with us of heroism and joy as well as stories of tragic and unnecessary suffering.
To share, email tools@verrazanofoundation.org