Knowing More Can Sometimes Serve a Patient Less

Don’t  Tell Me When I am Going to Die

By B.J. Miller and Shoshana Berger

NY Times Op-Ed Piece, Sunday, June 23, 2019

When faced with serious [life-threatening] illness, being able to make decisions about the flow of information is one of the most life-affirming things you can do.

 Steve Scheier has created a tool to help you let your physicians and other caregivers know your wished regarding how much information you want to hear.  It’s a form called the Prognosis Declaration, and it allows patients to choose among a four options:

1)   Tell me everything.

2)   I’ve not decided what I want to know about my prognosis, so ask me over the course of my treatment.

3)   I want to participate in my treatment, but I don’t want to receive any information on my prognosis.

4)   I don’t wish to know any information about my prognosis but I authorize you to speak with [blank] about my case and for you to answer any questions that this person may have about my likely prognosis and treatment.

The Prognosis Declaration form is not a vote for denial; it’s simply an acknowledgment that knowing more sometimes serves us less. Because, no matter what we choose, we never really get to know everything.

B.J. Miller, the co-author of this Op-Ed piece, has had an interesting trajectory from student to doctor.  Spend three minutes with his “Brief But Spectacular” take on Living and Dying.

Dax Cowart Obituary

[Last week, we featured a NY Times article by Dr. Alessandra Colaianni about a T.E.N. patient that she cared for in Boston.  In it, she referenced Dax Cowart.  So, my attention was piqued when I saw his obituary in the Times on May 15^th.]

Full NY Times Obituary.

Dax Cowart (1947 - 2019)

After his immolation, Dax became a lawyer and a prominent patients’ rights advocate. In the face of what he saw as medical paternalism, he argued that patients should have more autonomy over what treatments they receive and a choice in whether they even receive any treatment at all.

He overcame his hopelessness and found a mission in trying to persuade doctors to demonstrate greater respect for their patients’ wishes.  Cowart articulated his ideas in a powerful, positive way, and influenced many young doctors in their approach to patient care.

“To make this clear,” he added, “if the same thing were to occur tomorrow, and knowing that I could reach this point, I would still not want to be forced to undergo the pain and agony that I had to undergo to be alive now. I would want that choice to lie entirely with myself and no others.”

Not that you have time; but here is the Dax Cowart Documentary (1 hr).

The Pride of Lab Rats

No Worst, There is None

By Alessandra Colaianni, M.D.

New York Times, May 10, 2019

She was young and strong, fought hard no matter what we did, tried to pull the breathing tube from her throat each time she approached sufficient consciousness to permit purposeful movement. Her eyelids were sewn shut to protect her eyes from desiccation, but this did not prevent tears from rolling down her face. In the burn surgery intensive care unit, she lived out this nightmare in a heated cage made of what looked and felt like plastic wrap: a necessary intervention, for she had lost every last bit of her skin.

This beautiful essay was written by a senior ENT resident from Boston.  There is much in it for all of us. Osler wrote: “I would urge upon you to care more particularly for the individual patient than for the special features of the disease. Dealing as we do with poor suffering humanity, we see the man unmasked, exposed to all the frailties and weaknesses, and you have to keep your heart soft and tender…”  Dr. Colaianni’s beautiful essay channels Osler.  Hypertext Link. (If this does not work, I'll send you a pdf.

Bitter Pill

a chronicle of psychiatric harm

Bitter Pill by Rachel Aviv
The New Yorker, April 8, 2019
Link to Full Article.
This significant article chronicles the life of a young woman who was given multiple psychiatric diagnoses by some of the "best" psychiatrists in the country. She was placed on almost every imaginable psychiatric medicine that appear to have done her great harm. It's a cautionary tale that is well worth a close reading. The article is quite long and rambles a bit but much in it of teaching value.

The protagonist of “Bitter Pill” is Laura Delano, who was diagnosed with bipolar disorder shortly before she entered Harvard as a freshman in 2001. She saw psychiatrists at McLean Hospital in Belmont Massachusetts. There she was initially placed on Prozac, Provigil and Ambien.

Link to DJE's notes.

Here is a moving lecture by Laura Delano.

Don't Demonize Opioids

Our preoccupation with opioid misuse could become the tail wagging the dogBob Roehr biomedical journalist. Washington, DC, USABMJ 2017;359:j4727

It is rare that we hear from those who use prescription opioids on a chronic basis. Their voices are important counterpoints to the loud, self-righteous jeremiads of physicians, politicians and law enforcement professionals.
Roehr tells us:

• Demonising prescription opioids can come to no good end.
• I use an opioid drug, hydrocodone, every six hours, and have done so for about a decade.
• The surge in opioid related deaths in the US is troubling. But it is important to remember that it is fueled by street drugs and by fentanyl and its analogues, either alone or laced into a variety of illicit drugs.
• People who have lost access to prescription opioids have turned to cheaper, more accessible, and more dangerous, potent black market options, according to experts, and the death toll has soared.

Full BMJ article: Download Roehr Don't Demonize Opioids

Notes on Morphine by FW Peabody (1927)

Notes on Morphine by F.W. Peabody

Notes on the Effects of Morphine 
For full essay Download Notes on the Effects of Morphine
By Francis W. PeabodyFrom The Caring PhysicianThe Life of Dr. Francis W. PeabodyBy Oglesby Paul
The following unpublished essay is “[a]n example of how FWP, the scientist/physician, used his terminal illness to make clinical observations on himself with his description of his reactions to injections of morphine. This document was completed in October, 1927, five days before his death, and is an unique and vivid record of one patient’s response to the powerful narcotic.” This is an extraordinary essay. Why it was never published is a great mystery; but may lie in the fact that morphine and its derivatives are a much-maligned drugs.. Herein, we see how it allowed FWP to be lucid and function masterfully until the end.

Download Notes on the Effects of Morphine