Monday, May 23, 2011

THE "GOOD DEATH" PANEL

Which phrase reflects your wishes?


I don’t want to die in a hospital.

I don’t want to die in pain.

I don’t want to die as a burden.

I don’t want to die.


Death isn’t a choice, but the circumstances can be. To understand options and have a say when the time comes, however, requires communication between doctor and patient, among others, while the patient can still comprehend. It requires, if you will, a "death panel."

Dr. Suzanne Koven addresses this in “A (good) death panel,” an insightful Boston Globe column about medical support at the end of life. She uses the lonely and painful death of a Tolstoy character to begin the piece, and fiction is an interesting choice, as so much of the contemporary “death panel” phobia is fabricated.


Koven notes that death is often seen as failure by doctor and patient alike, and yet it remains inevitable no matter how adept medical science gets at prolonging life. Pretending otherwise helps no one, certainly not the unreachable patient on life support or the nurse whose wrenching task it is to repeatedly change dressing on skin that no longer heals.


Koven tells a moving true story of a “good death,” in hospice, of a terminal patient after a process in which she and her spouse were engaged in conversations with an oncologist, a palliative care specialist, clergy and a psychologist. This patient was surrounded by a an extended support community at the time of death. We should all be so lucky.


To read the Koven’s column, see http://bo.st/kGrmh5


So, can there really be such a thing as a "good death" panel?


Thursday, May 19, 2011

NUMBERS ON A STRANGER'S FOREARM

On BBC news this morning, I heard the film director Lars von Trier blather on like someone who loves to hear himself speak and counts on an editor to clean up the final product. Only Lars didn’t have an editor, so he went on about understanding Hitler, Israel being “a pain,” and other comments that made me remember a man who rolled up his sleeve and confronted me a quarter-century ago at L.A.’s Museum of Tolerance.


My wife and I had just watched gruesome Holocaust footage and were exiting a large room that served as a replica of a Nazi gas chamber. The stranger turned around, rolled up his sleeve, and exposed his forearm. He was short, I remember, had tears in his eyes and numbers tattooed on his arm. “This happened,” he said, with a piercing stare. “This really happened.”


I didn’t question that it happened, but the man made me uncomfortable and I didn’t comprehend why he so emotionally stressed the importance of remembrance. But I remembered him twice this week. Once while listening to the unthinking von Trier. The other while reading a quote that, in a different context, without the attribution -- and after months of reading about terminal diagnoses, treatment of merciless pain, and intractable disputes between doctors and patient/families -- I’d have found neither offensive nor outrageous.


The quote: “Patients considered incurable, on the basis of human judgement, can be granted mercy deaths after a critical diagnosis.”


“Can be granted,” in particular, implies a respect for patient autonomy, and who would deny the value of mercy? But the context and attribution exposed the lie behind this mercy and autonomy. The quote is on a wall about halfway through the exhibit “Deadly Medicine: Creating the Master Race” at Harvard Medical School’s Countway Library. It is taken from a note to Nazi doctors signed by Adolph Hitler.


In that moment, “death panel” took on deeper meaning. So did “human judgement,” and the challenge for a system in building trust among individuals.


“Deadly Medicine” was stirring, and I’d probably return before it closes in June if the facts and images hadn’t been so disturbing. After 90 minutes, I left unsure what to think. But I came away with resonant facts that I’ll carry with me:

  • Nazism’s effective devaluing of “defectives,” and measuring individual worth by value to society. Another Hitler quote: “The wishes and the selfishness of the individual must appear as nothing.”

  • In Nazism’s rise, doctors were among its earliest and strongest proponents.

  • Under Nazism, anti-Semitism was medicalized; “Jews are lice,” reads one poster from the time. And yet long before the Nazi era, and much closer to home, there were 295 eugenic sterilizations performed at Mendocino State Hospital in Northern California.

  • Another quote, this one from Joseph Goebbels, Nazi minister of propaganda: “Our starting point is not the individual, and we do not subscribe to the view that one should feed the hungry, give drink to the thirsty, or clothe the naked ... Our objective is entirely different. We must have a healthy people in order to prevail in the world.”

  • Conscious of religious opposition to rassenhygiene, or ethnic cleansing, the Nazis used war as cover.

  • Rising costs of institutional care fueled support for eugenics. Indeed, financial burden on society is cited often in Nazi literature.

To that man at the Museum of Tolerance, that unforgettable man, I’d like to say that, in studying the CEC’s bioethical questions, I’ll carry what I can from his memory as I consider the value of one human life.


Tuesday, May 17, 2011

HOSPICE & THE HALL OF FAMER

A Google search of Harmon Killebrew produces many tributes to his baseball talents, in particular his ability to hit a ball a mile, which is an exaggeration, but less so in Killebrew’s case. His home runs were monstrous. As a kid, I was a fan, even when he went up against Sandy Koufax and my Dodgers.


But I will remember him for decisions made in his final week. Because faced with a terminal illness, esophageal cancer, and out of therapeutic options, the Hall of Famer, who died on Tuesday, made the hard but courageous choice to stop treatment, spend what time he had left with his family, and to shine a light on hospice care.


Only last Friday, Killebrew released this statement: “It is with profound sadness that I share with you that my continued battle with esophageal cancer is coming to an end. With the continued love and support of my wife, Nita, I have exhausted all options with respect to controlling this awful disease. My illness has progressed beyond my doctors’ expectation of cure. I have spent the past decade of my life promoting hospice care and educating people on its benefits. I am very comfortable taking this next step and experiencing the compassionate care that hospice provides. I am comforted by the fact that I am surrounded by my family and friends. I thank you for the outpouring of concern, prayers and encouragement that you have shown me. I look forward to spending my final days in comfort and peace with Nita by my side.”


That resulted in this TV interview by Fox 9 in Minneapolis with Don Grossbach, medical director at Alliance Hospice. The questions are smart, the replies enlightening, the result a fitting legacy. http://bitly.com/kC2LlT


Friday, May 13, 2011

DR. DISCIPLINE IN MASSACHUSETTS

Under the headline, “Study: Mass. medical board ranks poorly on MD discipline,” the Boston Globe reports on Public Citizen’s comparison of frequency of doctor discipline by state medical boards. The comparison is based on the number of disciplinary actions over three years leading to license revocation, suspension or probation. In Massachusetts, that number is 1.83 for each 1,000 doctors, placing the state 47th out of 51 (including the District of Columbia), ahead of only Connecticut, Wisconsin, South Carolina and Minnesota. The top three: Louisiana, Alaska and Ohio.


Is this state-by-state comparison valid? Is it a fair gauge of disciplinary practice?


See the report here: http://www.citizen.org/documents/1949.pdf

See the Globe story and the comments in inspired here: http://bo.st/iTYWaf


Monday, May 9, 2011

Weighing In on POLST/MOLST - Physician Orders for Life-Sustaining Treatment / Medical Orders for Life-Sustaining Treatment

Given Massachusetts's well-earned reputation for excellent medical care, it is somewhat surprising that we are not among the twelve states with a full-blown POLST program. POLST is the acronym for “Physician Orders for Life-Sustaining Treatment.” This is an document for use by physicians to assure that they have thoughtful conversations with patients facing serious illness. The document gives patients a strong voice in determining their care.

   In an April, 2011 report (In Brief 189) AARP outlines the evolution of state POLST programs and provides useful information for states creating such programs or refining existing efforts. AARP describes the program as “...a promising program to elicit and honor the treatment goals of people with advanced progressive illness or frailty.”
   Hopefully Massachusetts will soon join the list of POLST pioneers. A state legislature mandated pilot program in Worcester, called MOLST (Medical Orders for....) was completed earlier this year. And the recently released Massachusetts Expert Panel on End-of-Life Care (March, 2011) included a recommendation that “[A] full statewide implementation of MOLST should be achieved no later than January 1, 2014.”

The will is present. All that is needed is the money to implement the program.
 
Should Massachusetts residents want the legislature to fund this effort? The answer is unequivocally yes, if, when we are seriously ill, we want the following:
 
  • For our doctor to sketch out transparently all options for medical treatment.
  • To exercise our right to determine procedures we want or do not want. Absent our explicit statements, doctors are obligated to "do everything," even if it the procedure or outcome is not one we would have chosen.
     
  • To relieve our health care agent from the burden of guessing what care we would want.
     
  • To have the opportunity to think about and make decisions about such procedures, should we need them, as dialysis, feeding tubes, resuscitation when the heart stops or breathing apparatus is needed. Chances are, if there is a need there wouldn’t be much time, if any, to make calm and thoughtful decisions.
     
  • To have one document which efficiently follows us from one medical facility to another, which we can revise periodically, which is our independent and thoughtful voice.
MOLST will serve us well. It is well worth the Commonwealth's effort and monies.
 
Herman J. Blumberg (Rabbi)
Member, The Community Ethics Committee,
Division of Medical Ethics, Harvard Medical School
Boston, MA