Cell 2 Soul: The Humane Health Care Blog

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.

Stay With Me

Our colleague, Dr. Rakesh Biswas from Bhopal, India, forwarded us a link to a memorable essay in the current issue of The Lancet.  Thank you, Rakesh!

(from the Lancet’s comments on this essay) “We share the same space, but not the same time”, writes Naaheed Mukadam about a patient with dementia in her essay “Stay with me”. The essay, which won the Lancet’s 2016 Wakley Prize, examines the way dementia disrupts life not only for the patient but also for the family and carers.

To say more would spoil the impact of this sensitive, articulate and important article. It well-deserves the prestigious Wakely Prize.  Your time to read or listen to it will be well-spent!

Read it: Download WakleyPrize_StaywithMe

Listen to it: Stay With Me MP3.

Help With Dementia: A Personal Story

by William Zeckhausen
You can contact Dr. Zeckhausen at Email.

After I received the diagnosis of Alzheimer’s I had many questions that went unanswered by my care givers.  Statistically 50% of American adults will develop dementia after 75, most likely Alzheimers.  I want to share with those who have it, or will have it, what was missing for me, for at least a year, after I received the diagnosis, and what would have made a major difference in my coping with this condition.  Too many primary care physicians, who give the diagnosis, have too little, if any, training in discussing it with their patients. Even specialists often don’t suggest what to do about it. 

Full Text: Download Zeckhausen – Dementia

A 500 Pound Amoeba

 

A 500 Pound Amoeba
and Other Psychiatric Tales

 

Steve Sobel is a practicing psychiatrist in northern Vermont. "A 500 Pound Amoeba" is a collection of 10 compelling vignettes of patients with psychiatric illnesses. These comprise depression, mania, OCD, body dysmorphic disorder, borderline personality, generalized anxiety disorder, schizophrenia, acrophobia, psychotic depression, and dementia. The stories are told with great sensitivity. Each one is divided into two parts. The first describing the illness as appreciated from the patient’s vantage point and the second explains the clinician’s approach and touches on the doctor-patient relationship.

We have all known patients like the composites Dr. Sobel eloquently conveys. As physicians, we have all had patients like these. Sobel’s narrative style is easy to read and follow.  These tales afford profound insights into the illnesses covered.

This slender volume of less than 130 pages will make compelling reading for physicians, mental health professionals, trainees, medical students and all others with an interest in mental health.  Sobel has a humble, gentle, compassionate writing style and the tales are memorable. The narrative form employed also serves as a template for the presentation of similar patients.  Reading "A 500 Pound Amoeba" one recalls Oliver Sacks' "The Man Who Mistook His Wife for a Hat" but I found Sobel's book less didacticand more humane.

A 500 Pound Amoeba is available at Amazon for around $10 and also on Kindle for $7.

Caregiving's Imperative

Arthur Kleinman's recent Perspective piece in the New England Journal of Medicine deserves a wide audience.  Unfortunately, full access is open to only NEJM subscribers or those affiliated with academic institutions.  If, after reading the following quotes, you want to read the entire article, please email me and I'll send you a copy.

picture from http://kennonsburgumc.com

"Modern medical practice's greatest challenge may be finding a way to keep caregiving central to health care. The moral core of medicine may seem abstract, until you see health professionals passionately struggling to be useful, compassionate, responsive, and responsible while working with the indifference of bureaucratic rules, the cold counting and costing of institutional audits, and hard-to-balance personal demands on their time and concern. 

Looking at medicine [as a caring vocation] reinforced my belief that the structure and demands of medical schools and hospitals create obstacles to caregiving. How to revivify caregiving in medicine became the issue. Teaching about illness experiences remains important. Yet the moral–emotional core of those experiences deserves greater primacy — as does the social suffering that affects everyone, but especially marginalized people already injured by poverty, isolation, and other forms of structural violence."

From Illness as Culture to Caregiving as Moral Experience
Arthur Kleinman, M.D.
N Engl J Med 2013; 368:1376-1377April 11

Dr. Rakesh Biswas alerted us to an article in the Stanford Medical Alumni Magazine about Kleniman and his work -- especially his recent epiphany.  See:  Medicine: A Love Story.  The past few paragraphs are especially important.

Story Telling and Dementia

Lisa O'Brien, of Williamstown, alerted us to an NPR piece which reports on how getting people with Alzheimer's and other forms of dementia to tell stories can be therapeutic.

"Storytelling is one of the most ancient forms of communication — it's how we learn about the world. It turns out that for people with dementia, storytelling can be therapeutic. It gives people who don't communicate well a chance to communicate. And you don't need any training to run a session."

See: "Alzheimer's Patients Turn to Stories Not Memories."

In our era of high tech medical care, here is another example of a low-tech intervention that holds promise without increasing the cost of care.

For more background about this program see:  TimeSlips.