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.
“The sooner we start talking about death, the better.”
Have your taken Death Ed?
In this lucid Op-Ed piece, Dr. Jessica Nitter makes a compelling case for a new compulsory course for high school students. It is well worth reading.
"Many of us would choose to die in a planned, comfortable way, surrounded by those we love. But you can’t plan for a good death if you don’t know you’re dying. When patients are prepared, they die better.
I believe it is past time for us to educate [our patients] about death, an equally important stage of life, and one for which the consequences of poor preparedness are bad.
I propose that we teach Death Ed in all of our high schools. I see this curriculum as a civic responsibility."
Lagniappe: “Go Wish,” a card game designed to ease families into these difficult conversations in an entertaining way.
and Extremis (2016, Netflix Documentary, 24 minutes)
Following the death of an elderly friend and neighbor, Cell 2 Soul author, Marla Lukofsky, reflects on being single, living alone, aging, friendship, and how to protect what matters at the end of life.
In her narrative, posted in the Online Journal of Community and Patient-Centered Dermatology, Marla examines new feelings and relevant issues following the death of her long-time friend and neighbor, Enid. Marla reflects upon the ever increasing single, aging population, living alone, and how that may affect their fate in life and in death no matter what preparations have been made.
Marla also questions the current trend to treat this special group as either disposable or invisible instead of appreciating them for the rich human resource they are.
You are invited to follow Marla through her friend’s funeral and view what was left behind. She asks, “Are we any different than that older person we pass by so quickly and dismissively? I am she, she is me. We are they. It’s only a matter of time.”
Goal: To help, empower and support all adults to prepare for their future and take the initiative to talk to their doctors and their friends and family about what matters most to them at life's end.
Contemplating one’s own death and doing some basic preparatory work is certainly not an easy task. However, the emotional, physical and the financial toll of not doing so is exorbitantly high. People who do not clearly document their wishes and preferences for care at the end of life are often subjected to futile medical treatments that they neither seek nor benefit from. Their families are burdened by the medical bills accrued from the numerous ineffective treatments many patients get at the end of life. In fact, a large research study showed that 62 % personal bankruptcies are due to medical expenses. Over 75% of the people who became bankrupt due to medical expenses had some form of health insurance (i.e., having health insurance does not protect you and your family from medical expense related financial crises).
Letter Project Tools:
What Matters Most Letter: This is a letter template that allows anyone to document what matters most to them and what treatments they want in the future. This tool is free and is available in print, as an online fillable form and as an iPhone and Android App in eight different languages.
Letter Project Advance Directive: This tool allows anyone to answer a few simple questions in English. When they finish and click print, the tool will send them an auto-filled valid advance directive document and a supplemental letter to their doctor describing their preferences for medical care at the end of life. This tool is free and is available in print, as an online fillable form and as an iPhone and Android App.
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. "
We were fortunate to have known Alan Mermann, a dear and glorious physician who, during his earthly tenure, wore many hats: cared for pediatric patients, investigated art, music, philosophy and attended to the spirit. He was a pioneer in death and dying studies at Yale; a patient and gentle man who cared for many both physically as a pediatrician and spirituality as the pastoral leader for Yale Medical School.
As chaplain, he created a safe space for medical students to come and decompress from their crazy schedules. We visited this sanctuary once and remember a quiet place with comfortable chairs, coffee, tea, cookies, the New York Times and a pervasive feeling of welcome. We also recall a lecture Mermann gave around 1990 on van Gogh’s life called “Starry, Starry Night.” It had music, great images and inspired introspection. How many presentations are still vividly remembered after a quarter of a century?
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.”
She is writing a series of articles entitled "Musings on Mortality" that will appear in the Berkshire Eagle. Many of you will be interested in them.
Deborah says: Everyone claims to want a good death, but very few of us have one. Why is this the case? How can it be different? My intention is to help us navigate the mortal landscape and to, against all odds, prepare for illness and dying for the sake of ourselves, loved ones and future generations.
The first article is: Musings on Mortality: Death-phobic culture hinders end-of-life plans. It was published on October 5, 2015. Download Alecson Musings 1
Alecson with students at Williams College, January 2015
In his 37 years, Paul Kalanithi wore many hats. Near the end of his neurosurgical training at Stanford, he was diagnosed with widely metastatic lung cancer. He wrote a memorable Op-Ed piece for the NY Times in January 2014. He continued working when he could. He and his wife, Dr. Lucy Goddard Kalanithi, had baby Cady on July 4, 2014.
A palliative care colleague wrote: “His ‘dual citizenship’ as a doctor and as a seriously ill patient taught him that respectful communication is the bedrock of all medicine. We [came to] understand that the so-called soft skills of medicine are the truly hard skills to teach and to learn.”
Too few of us, these days, have the gift of time. Spending a few moments with Paul Kalanithi will be worthwhile. If you can take the time, start with the video produced at Stanford.
Yesterday was the anniversary of my mom's death. On that day back in 2006, in the afternoon, my mom took her last breath, in her own bed, just as she had wanted, just as it should be. She was diagnosed with Acute Myeloid Leukemia one year after my dad died. It was terminal.
I remember when I went to say the mourner's prayer for 11 months at synagogue. I met so many people in the same situation. They were of great comfort to me. This daily prayer and those people there helped me get out of bed every morning. It was there that I met one of my now dearest friends, out of my tragedy...
The End is a New York Times series that features essays by people who work in fields dealing with death and dying, like medicine, ethics and religion, as well as personal essays by those who have experienced the death of a loved one. It started at the end of January, 2015 with a piece by Ira Byock.