Cell 2 Soul: The Humane Health Care Blog

Man versus Nature — Also Sprach Zarathustra and an End-of-Life House Call

by Maxwell M. Krem, M.D., Ph.D.

N Engl J Med 2017; 377:709-711

In this remarkable essay, an oncologist relates his encounter with a long-term patient who has decided to avail himself of the state’s death with dignity law and walk away from yet another painful round of chemotherapy. On his drive home, the physician hears a musical composition that reframes the experience in terms of the dialectic of Man versus Nature.

I recall reading of an exchange Aaron Copeland had with a fan who asked, “Does music have meaning?” Copeland answered, “Yes.” “Great, can you tell me what it is in words?” Copeland replied, "No." This Perspective piece is an impressive attempt to do just that.

PDF: Download Man versus Nature — Also Sprach Zarathustra and an End-of-Life House Call - NEJMp1705492

 

Image from NEJM article

 

The Daughter Care System

“The best long-term care insurance in the United States is a conscientious daughter.”

“As medicine advances, people are surviving longer and longer with chronic conditions, and will need more and more caregiving.” It seems clear that women will continue to shoulder a disproportionate burden of the care. “A lot of women have been in caregiver roles traditionally. They may have that skill set, or intention, or a feeling of obligation.”

This is a concise and important article from the NY Times, by Roni Caryn Rabin. For full article, go to: The Daughter Care System.

One thing it does not cover is the negative health effects that family care-givers suffer. Katie Butler describes those in her landmark book, “Knocking on Heaven’s Door.” Here are some notes on Butler’s book.

Are You ready to Sign Up for Death-Ed?

“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)

The Stanford Letter Project

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.

Printable Stanford Letter Form.

Another Downloadable Version.

Also see, "What Matters Most to Me" from a recent British Medical Journal Personal View.

My Favorite Moment as a First Year Doctor

By Dhruv Khullar

NY Times Journal of Medicine, March 25, 2016

"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.

 

Three End of Life Poems

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

LIFE PANEL

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

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 housecleaning.

My argument is that the layman and not the physician has the potential perspective and effective power to stop the current iatrogenic pandemic.

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 healing.

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.

 

How to Prepare for a Good End of Life

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.