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Marsha teaches in the Narrative Medicine Masters program at Columbia University and co-chairs the University Seminar on "Narrative, Health, and Social Justice." She is co-editor of Stories of Illness and Healing: Women Write Their Bodies (Kent State University Press, 2007) and has written on palliative care, end of life, and narrative. She has been a member of the New York State Palliative Care Education and Training Council and is a founding Board member of the Westchester End of Life Coalition.
Jim, I was looking at your experience map and thinking about how many times I read or hear stories told by caregivers about a loved one's end of life experience that describe a "cascade of interventions" (phrase borrowed from childbirth literature, but it fits) that the caregiver--even those who are professionals themselves--feels powerless to stop. These are treatment, testing, medication, interventions, but they are also situations in which a person at the end of life is "turfed" from nursing home to hospital to rehab to nursing home over and over again. I wonder whether "mapping" these stories you are gathering would add another dimension to your project: the map itself would identify places where caregivers could change the story. Experiences of others would be helpful in this, but even visually seeing where the "cascade" could be halted or diverted, would enable us to at least ask the right questions at the right time. My mother's real decline started with hospitalization for a fall. She was not injured but by the time she spent 12 hours in the emergency room, and a week in the hospital for various minor problems, she had lost ground physically and cognitively--ground that, because she was in her 90's, she never recovered.
Jess, Yes, Eddie Gonzalez at Story Corps is great. We love working with him, and the Legacy Project is all about partnerships and collaboration. I wanted to share with you this amazing work that is being done by a former student of mine, Claytie Mason http://www.claytiemason.com/#!presently/cee5. Claytie was a theatre MFA student at Columbia when she took the "Narratives of Death, Living and Caring at the End of Life" course I teach. She was very interested in how children experience serious illness and imagine death. The production she created, "The Big White Door," was just beautiful, crafted from qualitative interviews with parents, clinicians, and conversations with kids. I just wish we could produce "The Big White Door" for clinicians and carers in every setting in which children face illness and death.
Hi Cheryl, I am really enthusiastic about this idea. Before coming to Columbia I directed a Health Advocacy masters program at Sarah Lawrence College and was very involved with the local county network of Aging in Place programs. As much as I think this concept would fit well with AIP programs, most of them are in communities in which people have the resources to pay for help and may not be willing to consider this alternative. A better fit, I would think, would be NORC communities, Naturally Occurring Retirement Communities. These are more middle middle or working class and receive government support to hire a social worker and run programs to help people age in place. The very fact that they are government supported makes them a possibly fruitful place to partner, with the young parent/child caregiver receiving a government stipend, as you suggest. The NORC social worker could oversee this kind of program. I think it is worth checking out if you haven't already. Marsha