Cell 2 Soul: The Humane Health Care Blog

Parients as Partners

from Patients As Partners web site

Do you know what your patient is thinking?  BMJ 2015; 350

This is a new series in the British Medical Journal that puts the patients on the podium as teachers for physicians and other health care workers.

“Though patients and carers are becoming more involved in the ongoing education of healthcare staff, we rarely have the chance to set the agenda for what we would like you to learn. In our new patient led and patient authored series, What Your Patient is Thinking, we hope to redress this balance a little. The points made will range from practical hints and tips for meeting needs specific to certain conditions through to challenges to the medical status quo. What they will all do is offer practical things you can do differently tomorrow as a result of reading what we have to say.”

The first essay, Why there’s no point telling me to lose weight
BMJ 2015; 350, is powerful, hard-hitting and insightful.  It highlights how off-putting some medical visits can be for patients.  It is worth studying.

There is so much more to learn, and it appears that we have ignored a vital resource in our professional education: our patients and their families.  The BMJ is pointing us towards the obvious.  It is sad that so little ink has been spent on this area.

Other resources include:

Patient Voices Programme (U.K.) is partly an attempt to redress the balance of power between healthcare clinicians and managers and the people they serve, and partly an attempt to give decision-makers a different kind of opportunity to understand the needs of patients – other than the dry results of surveys and statistics.

Patients as Partners | Patient Voices Network (British Columbia):
As experts in our own lives, we can provide health system decision-makers with important information about how to best serve patients and involve us as partners in our own care. It is important for patients to participate in decision-making so that B.C.’s health care system reflects the needs and priorities of those it serves—the patients.

There are probably many more initiatives.

In My Cat's Death, a Human Comfort

by Margo Rabb, NY Times, January 26, 2015

Ms. Rabb’s moving essay addresses a subject that has received press in the past, but she covers it sensitively and well.  It is a keeper.  She begins:

Recently, when I told a friend about my cat’s death from cancer, I found myself saying, “It was such a better experience than when my mom died!” I realized how crazy it sounded — I hadn’t meant to compare their deaths like accommodations on TripAdvisor — but it was true.

Full article

Download In My Cat's Death, a Human Comfort - NYTimes.com

Poetry as Medicine

“art acting as a medicine”

Brian Maurer, a pediatric practitioner, poet, writer and editor, introduced me to a fine article that looks at the arts and medicine.

Sometimes, there is no need to deconstruct. Poetry has always helped me to understand this world, and I never asked why.  It has helped me, as a physician, to understand my patients and I didn’t need to put poetry under a microscope or dissect it.  Even so, “The Rise of the Medical Humanities,” a rambling essay, by Belinda Jack, contains flashes of brilliance. Here are excerpts worth mulling overj:

Poetry’s use of language is at the furthest extreme from the self-help book, which is often dogmatic, insistent, reductive, bullying even…Poetry offers its language up to us and if we recognise it as true, we engage; if it fails to convince us of its truth, we let it go. And it allows for an individual engagement with the poem. This explains why funeral services so often include poems, rather than extracts from novels. Each of us can ponder what the poem conjures for us, bringing something felt into clearer and thus more comforting focus. Often the poem will be one that allows us to reconsider the absolute nature of death.

Faced with some of life’s most painful moments poetry can reassure us that we are not alone – other have suffered too. But a great poem also allows us to make sense of feelings that might otherwise be a searing amorphous mass somewhere deep inside us. Great poetry makes us understand the only half-understood; in that understanding comes relief, and it can feel very physical. This is art acting as a medicine.

One of the undersold features of poetry is its remarkable succinctness. The same is not always true of textbooks. And a corollary of this is that it doesn’t take much time to read a poem. But it does have to be read with a particular attention to detail, and that could be a useful training for medical students. You can’t race through a poem – as you might a textbook – looking for what you want to find. So I see the benefits of marrying poetry reading to various aspects of medicine.

The article references the National Association of Poetry Therapy.

Ms. Jack’s essay introduced me to a great poem by C. Day Lewis: Walking Away.

 

 

 

Little Green Pill

by Madelyn D. Kamen

Print version is better formatted: Download Little Green Pill

He was there every day,
Looking at her from the other side of the window,
Smiling at her as she handed over his little green pill.
He wasn’t that old and she wasn’t that young;
Neither had ever married.
She was a psychiatric nurse’s aide who understood the inmates
Because she had been abused as a child, pulling into herself
To avoid punishment.
He was there because he had been bullied as a little boy,
Making it a habit of staying away from the big guys who could
Beat him up.
Now, they were adults, albeit imperfect ones, who
Occasionally would sit together on her coffee breaks
And tell light-hearted jokes.  And forget their pain for a while.
Their shrink had suggested they might have a lot in common.
And truth be told, it had occurred to both of them.

One day, he was not at the window.
On her break she sought him out.
In his room, the bed was stripped.
His toiletries and clothes were gone.
Where was he, she wondered?
She asked the nurses.
They answered in soft voices with hooded eyes.
They said they didn’t know.
The next day in the obituary column she found his name. She went to the funeral with the little
cup and a pillbox in her purse.  After service was over, she pulled out the familiar little green pill, the one she had given him every day, and dropped it in the coffin.

Author Bio:  Madelyn D. Kamen, D.P.H. is a free-lance writer and the founder of a document development and management-consulting firm.  Prior to establishing this company, she was an associate dean and professor at the University of Texas Health Science Center at Houston. Kamen holds masters and doctorate degrees in public health. She has served on numerous boards in the community, particularly in the areas of women and children’s health and welfare.

 

T.M. Luhrmann on Mental Illness

T.M. Lurhmann is an anthrolologist, psychological anthropologist and essayist.  Much of what she writes is prescient.  Her recent piece, Redefining Mental Illness, in the Sunday, January 18, 2015 NY Times gives one much to contemplate.  Here are some extracts, reordered for clarity.

"Mental and behavioral problems are the biggest single cause of disability on the planet. In low- and middle-income countries, about four of five of those disabled by these illnesses do not receive treatment for them. The World Health Organization estimates that one in four people will have an episode of mental illness in their lifetime."

"Diagnoses were neither particularly useful nor accurate for understanding the brain, and should no longer be used to guide research."

"The implications are that social experience plays a significant role in who becomes mentally ill, when they fall ill and how their illness unfolds. We should view illness as caused not only by brain deficits but also by abuse, deprivation and inequality, which alter the way brains behave. Illness thus requires social interventions, not just pharmacological ones."

"One outcome of this rethinking of mental illness could be that talk therapy will regain some of the importance it lost when the new diagnostic system was young. And we know how to do talk therapy. That doesn’t rule out medication: while there may be problems with the long-term use of antipsychotics, many people find them useful when their symptoms are severe."

 

On Suffering

Everybody understands suffering. It's something that we all share with everybody else. It's at once utterly intimate, and utterly shared. So Buddha says, “That's a place to begin. That's where we begin.”  W.S. Merwin

The Fruit of Exercise

 

On the Death of a Colleague

Dylan Thomas famously intoned. “After the first death there is no other” – but perhaps there are many types of “first deaths.”  That of a child, that of a parent, a lover, sibling, and in Dr. Srivastava’s case – that of a beloved mentor and colleague.

“I marvel that in a hospital that routinely and efficiently deals with life, death, and all the intervening drama, the passing of our colleague has shattered the established structure for coping with loss."

"There seems to be an expiration date to grieving, a point when it becomes tedious to others.”

If you go to the pdf of " Download Srivastava Grief," you will need to scroll down on page one to get to the essay.  NEJM does not make it easy to share its pieces.

Steven Brill's Bitter Pill

There is a tsunami media blitz about Steven Brill's new book, America's Bitter Pill.  Is it because the book is really great or is it about marketing?  We will know in a few weeks.

Steven Brill has also recently published an important article in Time magazine on the same subject.  Both are called America’s Bitter Pill. 

See:  Zephyr Teachout’s book review of America’s Bitter Pill in the NY Times (1.9.15)
Time Magazine article:  you need to have a subscription to read it online
NPR interview with Teri Gross (35 minutes)
The Bill by Malcolm Gladwell (review of the Brill book). New Yorker January 12, 2015 (Full Text Online)  Gladwell, ever the contrarian, is less enamoured with Brill and his book than the others.

Excerpt from Terry Gross’ Interview of Steven Brill

“It's hard to understand why you get 36 different first-class envelopes with 36 different pieces of paper from the same insurance company on the same day. That tells you something about the efficiency of the health care industry right there. But then, as you open each envelope, they're as completely unintelligible to me as they are to you, as they are to everyone listening. But better yet, they're also as unintelligible, apparently, to the people who write them.

I got to do what is probably a reporter's dream ... which is I took one of those explanations of benefits, which said, "Amount billed: zero. Amount insurance company paid: zero." And the third column said, "Amount you owe: $154." So it makes no sense.

But here's what I got to do: I had scheduled, as part of the reporting for my book, an interview with the CEO of United Healthcare, the largest health insurance company in the United States — and my health insurance company, as it turns out. I went out to Minnesota to interview him and asked him all kinds of questions about what he thought the impact of the Obama health reform was likely to be. And at the end, I took that explanation of benefits out of my suit pocket and said, "I'm wondering if you could do me a favor, could you explain this to me?" ... "How can I owe $154 if nothing was billed?" He looks at it ... and looks up at me and says, "I could sit here all day and I couldn't explain that to you. I have no idea why they sent this to you."

Summation of NPR Interview:

GROSS: So we started our conversation by talking about your experiences as a patient and the bills that you got when you had open-heart surgery. So now being an expert on the history of Obamacare, on billing practices and on being a patient, if you could make one change what would it be?

BRILL: Well, it would be three.  You take the people who provide the kind of care that I saw firsthand in my own situation, and you put them in charge. You let them expand. You let major hospital systems expand, and you let them provide their own insurance. I'd rather buy my insurance from New York Presbyterian Hospital in New York or Yale New Haven because that's a brand I trust. And then you regulate them like crazy to make sure that they live up to their promises, and you control their profits. And at the same time, you regulate the cost of drugs, and you provide significant malpractice reform.

The NPR piece is a great interview and compliments the Time article.  The latter is not available online at this point.

There is a lot of important information in these resources.  If you are busy with many other things, start with Zephyr Teachout’s book review (online) and the Time magazine article that your local library will have.  I wonder, though, is this "a tale told by an idiot, full of sound and fury and signifying nothing?  Or is this "divinest sense?"

 

 

 

Doctor Loses License Over Assisted Suicides

by Alan Blinder (New York Times, December 31, 2014)

Maryland regulators this month revoked the medical license of an anesthesiologist for helping six ill people, none of whom had terminal conditions, to commit suicide.

The doctor, Lawrence D. Egbert, 87, lost the Maryland medical license he had held for more than 60 years after a disciplinary panel for the Maryland Board of Physicians found that he had engaged in “unprofessional conduct” while working as the medical director for the Final Exit Network, which offers aid to people “who are suffering from intolerable medical circumstances.”

Full NT Times article

(It's clear that some are still following in Kevorkian's footsteps)