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)
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.
"Too often in medicine, you feel like part of a machine, a cog in a massive bureaucracy. We cover each other’s shifts, we maintain a hospital’s patient flow — and at the end of many days, you feel nothing would have been different if another doctor had stepped in.
But standardized care, by definition, is not personalized care: it fails to acknowledge patients’ individuality. [In this age of the electronic medical record, there are still things] only doctors — as humans — can offer: critical thinking, clinical intuition, empathic care, exploring what’s important to patients so they can make the decisions that are right for them."
Dhruv Khullar’s moving Op-Ed piece articulates this with clarity and eloquence.
Here are three poems by Frank L. Meyskens, Jr.: Tidal Wave addresses the feelings engendered in me when a ‘favorite patient’ asked me quite directly to end his life. Pulling the Trigger was my answer. Life Panel was a general answer to Sarah Palin’s ignorant comments about DeathPanels.” His books of poetry are: Aching for Tomorrow (2007) and Believing in Today (2014).
Dr. Meyskens is Professor of Medicine, Biological Chemistry and Public Health, College of Health Sciences School of Medicine and Director, Chao Family Comprehensive Cancer Center, University of California Irvine. He writes: “I have written a lot about end of life issues including termination of life by physicians. PDF: Download End of Life Poems Meyskens
The sickness has revisited a body wracked, invaded unremitting, day and night. Life ebbs, the verdict in.
All systems and technology failing maxed out with morphine and wonder drugs vital juices no longer flowing. Desperate and despondent for hope.
Who should be the jury no controversy or doubt that the end is near. The last great act of living here.
Life closing, shadows abound Decisions made by a life panel the one most loved who will loosen the rope and send me home.
Medical Nemesis: The
Expropriation of Health (1976) by Ivan Illich
(I read this book in 1994 and it has resonated with me ever since. Here is an excerpt from the introduction. My full notes are in the pdf at the end of this post.)
The medical establishment has become a major threat to
health. The disabling impact of
professional control over medicine has reached the proportions of an epidemic.
Thoughtful public discussion of the iatrogenic [“physician
caused”, iatros=physician & genus=birth] pandemic, beginning with an
insistence upon demystification of all medical matters, will not be dangerous
to the commonweal. Indeed, what is
dangerous is a passive public that has come to rely on superficial medical
My argument is that the layman and not the physician has the
potential perspective and effective power to stop the current iatrogenic
During the last generations the medical monopoly over health
care has expanded without checks and has encroached on our liberty with regard
to our own bodies. Society has
transferred to physicians the exclusive right to determine what constitutes
sickness, who is or might become sick, and what shall be done to such
people...The social commitment to provide to all citizens with almost unlimited
outputs from the medical system threatens to destroy the environmental and
cultural conditions needed by people to live a life of constant autonomous
Fairly extensive notes from Medical Nemesis can be found here:
Download Medical Nemesis Illich Illich was a visionary. Few acknowledge his influence; indeed most are not even aware of it.
This six minute TED talk is by a layperson, Judy McD Johnston. In her words: "I am not a geriatrician. I design reading programs for preschoolers.
In the last few years, I helped two friends have the end of life they
wanted. I learned a few things about how to have a good end of life. At
the end, our bodily functions and independence decline. I found that
with the right people and a plan, our quality of life can remain high
during this time." For more see her website: goodendoflife.
This Link will enable you to see the talk in a full screen.