The C2S blog draws on the arts, the social and biological sciences to explore the many meanings of health and "dis-ease." Designed to be a locus where patients, their families and professionals can meet on a level playing field, it is the natural off-shoot of the Cell 2 Soul Online Journal. We encourage the submission of ideas, essays, poems, stories, humor, and timely reviews relating to the humanities and health care.
"Whenever Heather entered a patient’s home for the first time, she knew that she was walking into a long, long, complicated story that she understood nothing about, a story that was just then reaching its final crisis"
This longish and moving piece follows a hospice nurse on her rounds in Brooklyn. It is worth a close reading.
Ellen Rand writes us: "What’s the reality of caring for loved ones in decline? We’re not likely to see the rawness, the intimacy, the messiness, the profundity of it in the movies or on TV – except for a few rare pathfinders. David B. Oliver was one of them.
David and his wife, Debra Parker Oliver, possessed a deep knowledge gained over their professional lives researching and teaching about aging and end-of-life issues. That he responded to his own deadly illness in a meaningful way is tied both to his character and to his life’s work."
Ellen's beautifully written introduction to the Oliver's moving and instructive videos will interest many of you. We are grateful to her for having sent us her essay (which you can access here: Download Reality TV
Ellen Rand has been a journalist for more than 40 years, including five years as a housing columnist for The New York Times. She is a hospice volunteer with Holy Name Medical Center in Bergen County, New Jersey, a member of the Hospice Volunteer Association and the Association of Health Care Journalists. Her essays have appeared in several medical humanities publications, including Pulse—Voices from the Heart of Medicine; KevinMD; and Life Matters Media. She blogs athttp://lastcomforts.com. Ellen is the author of the recently published: Last Comforts: Notes from the Forefront of Late Life Care which has been called "a must read for caregivers, individuals with serious illnesses, their loved ones who care about their care and elected officials. A must read for caregivers, individuals with serious illnesses, their loved ones who care about their care and elected officials. "
A team of clinicians and researchers at Hospice Buffalo are seeking to demystify end of life dreams and understand their role and importance in supporting “a good death” — for the patient and the bereaved. They are studying people on a journey towards death, not people who just missed it.
¶A 76-year-old patient said he dreamed of his mother, who died when he was a child. He could smell her perfume and hear her soothing voice saying, “I love you.”
“We should be opening the door with our questions, but not forcing patients through it,” Dr. Timothy Quill said. “Our job is witnessing, exploring and lessening their loneliness. If it’s benign and rich with content, let it go. But if it brings up serious old wounds, get real help — a psychologist, a chaplain — because in this area, we physicians don’t know what we’re doing. ”
“The huge challenge of this work is to help patients feel more normal and less alone during this unusual experience of dying,” he said. “The more we can articulate that people do have vivid dreams and visions, the more we can be helpful.”
Excerpts: In the age of electronic health records, computer documentation in health care has morphed into more than an account of our work; it has replaced the work itself.
In home hospice, where I now work, the documentation is even more onerous than in the hospital and seems even more disconnected from actual patients. Hospice care is a covered benefit under Medicare, and the Centers for Medicare and Medicaid Services maintain rigid standards for documentation. They regularly withhold reimbursement if documentation is deemed incomplete or flawed.
Charting a hospice admission usually takes between two and four hours, and requires filling out a seemingly endless number of data fields — some of them defying logic.
Electronic health records present an enticingly clean and clear vision of clinical work, whereas real patients are messy, confusing and unpredictable. Sadly, all the attention given to our paperwork is taking us further and further away from the difficult truth that meeting very ill patients’ needs occurs in real time with real people, not in the paperwork about them.
Goethe wrote: “In the end, we are dependent on creatures we have made. “ This sad truth underlies Theresa Brown’s excellent Op-Ed piece on Patients vs. Paperwork.