WEIGHING FUTILITY AND AUTONOMY

In an intractable dispute over care at the end of life, should respect for autonomy dictate how to proceed?

Clearly, as the Community Ethics Committee studies medical futility, one thing we’ll need to consider carefully is the value placed on patient autonomy.

I find this passage from Atul Gawande’s book “Complications” insightful:

“Where many ethicists go wrong is in promoting patient autonomy as a kind of ultimate value in medicine rather than recognizing it is one value among others. Schneider found that what patients want most from doctors isn’t autonomy per se; it’s competence and kindness. Now, kindness will often involve respecting patients’ autonomy, assuring that they have control over vital decisions. But it may also mean taking on burdensome decisions when patients don’t want to make them, or guiding patients in the right direction when they do. Even when patients do want to make their own decisions, there are times when the compassionate thing to do is to press hard: to steer them to accept an operation or treatment that they fear, or forgo one that they’d pinned their hopes on. Many ethicists find this line of reasoning disturbing, and medicine will continue to struggle with how patients and doctors ought to make decisions. But, as the field grows ever more complex and technological, the real task isn’t to banish paternalism; the real task is to preserve kindness.”

(The Schneider reference is to Carl Schneider, professor of law and medicine at University of Michigan and author of “The Practice of Autonomy.”)

LOOMING COLLISION OF COST AND CARE

BBC News this morning told a compelling story about Lancet Oncology’s report on the “train crash” ahead over health care costs.

Says the report’s lead author, Dr. Richard Sullivan: "We're on an unaffordable trajectory. We either need to manage and reduce the costs or the cost will increase and then inequality rises between rich and poor."

In particular, the Lancet report criticizes care considered medically futile -- in particular, pricey chemo for no medical benefit among the imminently dying.

According to the BBC: “The report says solutions fall into two categories: reducing the cost of services or reducing the number of people using them.”

See http://www.bbc.co.uk/news/health-15032862

Thou Shalt Do No Harm

The morning email from Obit-Mag.com drew me into “A Faster Darkness,” the story of an elderly parent’s sudden onset of dementia and long, wrenching death. It was a time of irrational conspiracy theories, heavy sedation and the disappearance of all but the physical being the father once was.

The author is Robert Roper, a Johns Hopkins writing instructor, and I found myself thinking of Roper as a survivor before his father actually died, because in many ways he already was gone. But he wasn’t dead, and wanted to be, his son believes. His father would have wanted Roper to get a gun and end his misery. Roper could almost hear his father asking for that very thing, or so he writes. (http://bit.ly/oAJhw3)

Roper’s piece is yet another compelling look into a subject -- life, and how it ends -- around which our culture struggles to find common ground or meaningful vocabulary. Meanwhile those to whom we turn to care for the dying are viewed with distrust by families who find themselves, often quite suddenly, in the impossible position of speaking for someone who no longer can speak for himself.

We like to think of ourselves as quite highly evolved, and yet we can be abysmal communicators, especially in matters of mortality, faith and reason.

The lead story in the Metro section of Monday’s Boston Globe concerned the Boston Cardinal’s sermon imploring Catholic lawyers to put their weight behind opposition to a movement to legalize physician-assisted suicide in Massachusetts.

“We are called upon to defend the gospel of life with courage and resolve,” Cardinal Sean P. O’Malley said. Agree or not, there is rare and welcome clarity in the statement.

Before Death With Dignity can become a question on the 2012 ballot in Massachusetts, proponents need nearly 70,000 signatures of valid registered voters. Proponents want to make it legal for physicians to prescribe a lethal dose of prescription drugs to the terminally ill.

One fear of legally empowering physicians to assist in a suicide is that it “would be difficult or impossible to control, and would pose serious societal risks.” It might surprise you that this slippery slope argument comes not from a religious denomination, but from the American Medical Association. The AMA calls physician-assisted suicide “fundamentally incompatible with the physician’s role as healer.”

There is helpful clarity in that statement, too. Can a physician kill as well as heal? Is doing both too much to ask?

Dr. Marcia Angell, former editor of New England Journal of Medicine, is a longtime proponent of physician-assisted suicide. She told CommonHealth at WBUR.org: “For the patient, this is not a choice between life and death; it’s a choice of how to die -- slowly, or sooner but more peacefully.” (http://bit.ly/p1FYOg)

To disagree with that seems heartless. And yet to agree that this is not about choosing between life and death seems a victory of compassion over reason, because the practice clearly expedites death. For the best of reasons, perhaps, but the practice still expedites death.

The Community Ethics Committee, of which I’m a member, is studying disputes over futile treatment of the terminally ill, a particularly harsh example of society’s difficulty accepting mortality as it plays out most often in hospital intensive care units. Typically in cases of medical futility, a patient is determined by the care team to be in the process of dying, but the family wishes aggressive treatment to continue.

Distrust and bad communication are hallmarks of such disputes. Families are seen as irrational, doctors as heartless. In the middle are nurses, delivering treatments they deem harmful upon defenseless, dying patients.

Last spring, the CEC completed a serious attempt to clarify the line between caring and killing. The CEC’s report, “Palliative Sedation – Continuous Deep Sedation until Death as Comfort Care,” was submitted to the Harvard Ethics Leadership Group.

“Both euthanasia, where the physician is the agent administering a lethal substance, and physician-assisted suicide, where the patient is the agent administering a lethal substance, have as their chief end the death of the patient,” the CEC said in its report. “The primary goal in either circumstance is not to relieve intractable pain but, rather, it is to end life. The CEC felt strongly that the primary goal of Palliative Sedation is to relieve intractable pain and, as a result, it falls into an ethically supportable and potentially advisable treatment option.”

Physician-assisted suicide, even for the most compassionate of reasons, involves the healer in expediting death. It was important to the CEC, in finding ethical justification for palliative sedation, to ensure to the degree possible that patients died from the progression of their disease and not from the sedation.

The CEC supported the use of palliative sedation while deliberately distancing ourselves from endorsing physician-assisted suicide. The terminally ill in intractable pain should have access to relief - a medical treatment option to relieve their pain but not cause their death. To us, it was the difference between caring and killing.

"The Futility of Futility"

From Thaddeus Pope’s blog (medicalfutility.blogspot.com):

On September 26, Professor Julian Savulescu, Uehiro Chair in Practical Ethics at the University of Oxford, will discuss The Futility of Futility at the University of Sydney's Centre for Health Governance, Law and Ethics, and its Centre for Values, Ethics and Law in Medicine (VELIM). 

Here is the abstract:  "In modern times death has, for most of us, become a managed process, where treatment is selectively withheld and withdrawn, commonly on grounds of futility. In this paper Professor Savulescu argues that the concept of medical futility is deeply flawed. He will argue that judgements of medical futility are really covert judgements of best interests, which are frequently mistaken, or judgements about distributive justice. Decisions about medical futility would be best reframed as explicit resource allocation and distributive justice issues." 

Care in a Time of Crisis

The lead film review in the Globe Friday was of “Contagion.” The news pages detail massive fires in Texas and flooding on the East Coast. So the idea of a major catastrophe isn’t far from our minds. If you’d like to help Massachusetts prepare for a time when there isn’t enough medical care to go around, here’s your chance: A Community Conversation, about how tough choices should be made when medical resources are short, takes place Saturday, Sept. 17, at Harvard Medical School.
Go to  http://medethics.med.harvard.edu/  and click on “A Community Conversation.”

The price of prolonging life

In the Los Angeles Times, the aptly named David Lazarus writes about “Putting a price on prolonging a doomed life.” Writes Lazarus: “Clearly there are limits to how much can and should be done to prolong the lives of the terminally ill. But this is a matter for medical experts, not insurance bean counters, to address. A doctor is in the best position to determine what's most appropriate for his or her patient.”

To which Thaddeus Pope responds, on his Medical Futility blog: “On this I had rather thought that the overwhelming consensus was just the opposite. Physician practice patterns are quite strongly guided by the reimbursement incentives. So, too often, if it's paid for it will be bought -- whether it is wanted by the patient, whether it is beneficial for the patient.”

See the full LA Times column at http://lat.ms/pDzTSn

The Emperor, The Aquarium & other "beach" reads

The Community Ethics Committee, and its current study of medical futility, have done a number on my concept of “summer reading.” Though I’ve snuck in Patti Smith’s “Just Kids,” which inspired a second pass through Bob Dylan’s “Chronicles, Vol. 1,” the book dominating my summer is no one’s idea of a light seasonal read: “The Emperor of All Maladies: A Biography of Cancer.”

I’m not quite finished with this smart and unendingly impressive book by Siddhartha Mukherjee, a cancer physician, researcher and eloquent teller of a quite extraordinary story. And yet I know it to be one I’ll revisit for a long time to come. All that is wonderful and dreadful about medical science is represented on these pages -- inspiring dedication and visionary genius amid frightening stubbornness and wrongheadedness among cancer’s “warriors.” In Mukherjee’s history, the line between scientific vision and delusion is drawn painfully and slowly.

Mukherjee gives short shrift to E. Donnall Thomas, or maybe that’s my bias speaking. Thomas pioneered my daughter’s cure. I’d give him his own chapter.

But “The Emperor of All Maladies” has so much to take in that I find myself closing it and making time for short books and stories. I put it down last week for speed-read of “Death of the Adversary, “ by Hans Keilson, a German Jew and medical doctor who fled in the 1930s to Amsterdam, where he would practice psychotherapy and develop a specialty in treating childhood trauma survivors. Keilson, who died earlier this year at age 101, also wrote powerful works of fiction with unique insight into living through the chaos and trauma of that time. My daughter is an eighth-grader who will study the Holocaust this year, and I’m encouraging her to investigate Keilson. We’ll see.

Amid these books, I’d somehow overlooked “The Aquarium” when June’s double issue of the New Yorker arrived in the mail, and it took a few weeks to resurrect the copy. I searched for it after having been drawn to the story by letters in a subsequent New Yorker regarding its portrayal of end-of-life care.

Aleksandar Hemon has edited the past two editions of “Best European Fiction.” That “The Aquarium” is nonfiction is the hard truth Hemon and his wife and daughter will live with forever. It is the story of the death of their second child to a rare cancer of the brain.

Though my own daughter was cured of her life-threatening illness, much of Hemon’s story is familiar. Especially resonant is the inability of well-intentioned friends to even minimally comprehend what the family was going through. An accountant, after Hemon told him of his daughter’s grave illness, says: “But you look good, and that’s the most important thing!”

“I had a hard time talking to well-wishers and an even harder time listening to them,” Hemon writes. but he and his wife “endured their expressions of sympathy without begrudging them, as they simply didn’t know what else to say.”

In other words, words fail. And yet, Hemon writes, “Words were not failing Teri and me at all. It was not true that there was no way to describe our experience. ... If there was a communication problem, it was that there were too many words, and they were far too heavy and too specific to be inflicted on others.”

But words did fail, not because Hemon couldn’t find the right words to express his thoughts, but because the information contained was too much for most listeners to bear.

In reading “The Aquarium,” I was struck yet again that communication is at the heart of so many doctor-patient disputes. In the CEC’s work, this is especially true when the question is over how much time the patient has left. Sometimes poor communication skills by the doctor are the problem, but sometimes the words are clear, well chosen and empathically delivered, yet still not heard or comprehended. There’s a selectivity to what we hear when the news isn’t good. And there’s a strange, recurring fact in end-of-life dramas in which a patient or family can understand a terminal diagnosis without really grasping that the patient is dying. Words fail, indeed.

Sometimes, the words that fail are meant to speak for God.

“One of the most despicable religious falacies is that suffering is ennobling -- that it is a step on the path to some kind of enlightenment or salvation,” Hemon writes. “Isabel’s suffering and death did nothing for her, or us, or the world. We learned no lessons worth learning; we acquired no experience that could benefit anyone. And Isabel most certainly did not earn ascension to a better place, as there was no better place for her than at home with her family. Without Isabel, Teri and I were left with oceans of love we could no longer dispense; we found ourselves with an excess of time that we used to devote to her; we had to live in a void that could be filled only by Isabel. Her indelible absence is now an organ in our bodies, whose sole function is a continuous secretion of sorrow.”

There are many hard choices but no intractable dispute in Hemon’s tragic recounting. It was clear to Hemon that he and his wife would decide when it was time to stop measures that would keep Isabel alive but do her no therapeutic good.

“The gray-haired doctor turns to me and says, ‘Twelve minutes,’ and I cannot comprehend what he is saying. But then I realize: what he is saying is that Isabel was clinically dead for twelve minutes. Then her heart stops beating again, a young resident is halfheartedly compressing her chest, waiting for us to tell her to stop. We tell her to stop. She stops.”

I’ll carry Hemon’s essay, and the memories invoked by it, through the final chapters of “The Emperor of All Maladies,” and well beyond.

THE COSTS OF NOT FACING DEATH

A sample from a worthwhile read on end-of-life care from David Brooks: “My only point today is that we think the budget mess is a squabble between partisans in Washington. But in large measure it’s about our inability to face death and our willingness as a nation to spend whatever it takes to push it just slightly over the horizon.”

http://nyti.ms/raIujg

BEFORE LOU CAN DO HIS WORST

It would be wrong to call Dudley Clendinen’s essay in Sunday’s NY Times his advance directive for when Lou carries out his threat.

Lou is Clendinen’s nickname for Lou Gehrig’s disease, but theirs is no friendship. There is little uncertainty about what is in store for Clendinen, and he expresses no uncertainty about his plan to end his life before Lou does his worst. But the essay is directive for no one but Clendinen himself.

“We have to be able to see doctors and machines, medical and insurance systems, family and friends and religious as informative -- not governing -- in order to be free,” writes Clendinen, former Times national correspondent.

Clendinen writes about a drug that could might gain him some time, at prices he will not pay. “Lingering would be a colossal waste of love and money,” he writes.

He writes of his mother’s slow descent when “she looked at me, her only son, as she might have at a passing cloud,” and of his adult daughter, “the gift of my life. I don’t know if she approves. But she understands.”

Wherever you stand on decision-making at the end of life, Clendinen’s eloquent essay of acceptance offers unique and valuable insights. See: http://nyti.ms/qLl7ju

LEGISLATING CARE

Robert A Milch, on New York’s “flawed but needed” Palliative Care Information Act:
“The ills of the world will not be cured by legislation. But there are overwhelming data that the provision of palliative care and communication about it currently are inconsistent, inadequate, or untimely. The public and the medical profession long have recognized the unmet, ongoing needs for improved palliative and end-of-life care. Well-meaning advocacy and position statements, even ethical and professional standards, have proved inadequate in addressing the problems.”

For more, see: http://bit.ly/oF1GYZ

WHAT CAUGHT MY EYE

ADVANCE DIRECTIVE REGISTRIES

Lawyer and law professor Thaddeus Pope, whose own blog is an invaluable source for this one, recently made this interesting distinction between what a patient might reasonably or rightfully expect. Jane Brody wrote in the NY Times about the state’s Palliative Care Information Act, which Pope describes as “ basically a specialized informed consent obligation like that earlier enacted in California and more recently considered in Maryland and Arizona.”

Brody wrote: "Even knowing these facts [about palliative options], some patients are likely to choose to take advantage of anything and everything in the medical armamentarium that could conceivably grant them extra days, weeks or months of life. And such a choice is the prerogative of every terminally ill patient; the new law does not in any way deny that choice."

Pope’s distinction: “Well, the PCIA does not deny that choice. But it is hardly clear that patients have that right under New York law.”

KEVORKIAN'S LEGACY

NY Times columnist Ross Douthat on the death of Jack Kevorkian: “Fortunately, the revolution Kevorkian envisioned hasn’t yet succeeded. Despite decades of agitation, only three states allow some form of physician-assisted suicide. The Supreme Court, in a unanimous 1997 decision, declined to invent a constitutional right to die. There is no American equivalent of the kind of suicide clinics that have sprung up in Switzerland, providing painless poisons to a steady flow of people from around the globe.”

ADVANCE DIRECTIONS

The Department of Health and Human Services makes the astounding estimate of "between 65% and 76% of physicians whose patients had an (advance directive) were unaware of its existence." What might raise physician awareness of their patients’ written wishes? Pope points to an idea proposed in “The Advance Directive Registry or Lockbox: A Model Proposal and Call to Legislative Action.”in the Journal of Legislation, by Joseph Karl Grant. See Grant’s abstract at: http://bit.ly/l0OJ2C

AAMC: Palliative Care's Rising Role

Compelling vision from Dr. Darrell G. Kirch, president/CEO of the Association of American Medical Colleges”:

“Palliative care and related fields, like geriatrics, are a microcosm of the larger health care system. Everything is amplified when the patient in front of us is managing multiple chronic conditions, from the need for us to work seamlessly with other health professions to placing the patient and their family’s needs truly at the center of our efforts. For all these reasons, palliative care is a high-impact specialty that will see increased demand moving forward and will require some of medicine’s brightest minds to choose it as their career path.”

See the full text at: http://bit.ly/iNa3eG

The End-of-Life Care-toon

Thanks to http://www.pallimed.org for the tip on this animated view of end-of-life care, through the eyes of the Happy Hospitalist. After you watch, share your thoughts!

http://thehappyhospitalist.blogspot.com/2011/06/hospitalist-vs-icu-end-of-life.html

Kevorkian's Legacy

I don't pretend to know that much about Kevorkian - I have not seen the movies or documentaries and I have not spent alot of time reading about his methods or actions in "helping" people die. But, even so, I am emboldened to share some thoughts on his passing.

My first impression was curiosity at the fact that he did not choose to end his life in the way that he had chosen for others. He died in a hospital, apparently with plans for surgery to remove lesions from his lungs. He did not hasten his death, rather he was actively planning for life. That reminded me of a physician friend whose father had been an advocate for the Netherlands' laws for assisted suicide but who, when terminally ill, fought "tooth and nail" for every chance at life. Everyone approaches death in their own unique way and Kevorkian was no different, I suppose. But it is a curiosity . . .

My second impression was that, although his death-administering practices were rightly and highly questionable - he did not require second medical opinions or psychological counseling of his "patients" - he did us all the service of bringing to the fore what many in our society have been thinking but unable to say. If we work so hard to control the quality of our lives, can we not also work to control the quality of our deaths? What does it mean to "let go and let God" have control in this critical last moment of our life story? My grandmother stockpiled medicines in order to "end it" when she was ready. The stockpile was discovered in a bedside table and she was whisked away to spend her last two years in a nursing home, slowly but inexorably declining toward a death that was not particularly "good".

And my third impression was that Kevorkian's legacy will be one of advancing the necessary discussion in halls of government, corporate board rooms, and family rooms - and that is definitely a good thing. A Huffington Post blog entry speaks in the same breath of Palliative Sedation and Physician-Assisted Suicide . . . the Community Ethics Committee has submitted a report encouraging access to Palliative Sedation for those who are terminally ill in intractable pain - we called it Continuous Sedation to Unconsciousness as Comfort Care until Death. We viewed it as a merciful and appropriate treatment option. The sedation does not kill, it treats pain; it is the underlying terminal disease that brings about the patient's eventual death. In contrast, Physician-Assisted Suicide's primary focus is to treat pain by killing the patient - something different and troubling. The Committee has written an article that will be coming out soon in the American Journal of Bioethics - the heading is "Palliative Sedation is to caring as Physician-Assisted Suicide is to killing". When it is published, we will share the citation.

In the end, we probably die as we live. Kevorkian died as a doctor - in a hospital, trusting in yet more medical interventions. I hope as the dialogue about death continues in our society, we will find ways to ensure we die in the ways we choose - most of us desire to be at home, free of pain and fear, surrounded by loved ones. A "good" death. I hope that is what Kevorkian had.

Also see
http://www.huffingtonpost.com/janice-van-dyck/assisted-suicide-kevorkian_b_871287.html

DEATH'S RORSCHACH

The bidding for Jack Kevorkian’s ’68 VW van was up to $3,400 last year when eBay pulled the plug on an episode of morbid capitalism timed to coincide with HBO’s Kevorkian movie.

Thirty years earlier, in that reconstructed van, Kevorkian had assisted in the suicide of the first of his approximately 130 ... patients? victims?

Which were they, patients or victims? In life, or as portrayed by Al Pacino on HBO, was Kevorkian closer to Marcus Welby or Hannibal Lecter? He became known as Doctor Death, but he was also Death’s Rorschach.

Even as a subject for thoughtful consideration, we put off death as long as possible. Kevorkian, who died on Friday at age 83, made it unavoidable, and even people who considered his actions those of a murderer would concede that fact.

“His critics were as impassioned as his supporters,” Keith Schneider wrote in today’s New York Times, “but all generally agreed that his stubborn and often intemperate advocacy of assisted suicide helped spur the growth of hospice care in the United States and made many doctors more sympathetic to those in severe pain and more willing to prescribe medication to relieve it.”

Kevorkian’s van was equipped with the Thanatron and later the Mercitron, his homemade “death” and “mercy” machines. Kevorkian stopped using the Thanatron when he lost his medical license and could no longer prescribe the necessary ingredients. He served eight years in prison for the last of his assisted suicides, judged to be second-degree murder.

Nicholas Jackson began writing about Kevorkian in high school, and described his infamous work in The Atlantic (http://bit.ly/mxjQsI):

“Kevorkian outfitted the patient with an intravenous drip of a saline solution. When the patient pressed a button, the saline would switch to thiopental for sixty seconds. After that strong dose of thiopental, the patient would slip into a deep coma, at which point the Thanatron would inject a lethal dose of potassium chloride, a solution that stops the heart. Potassium chloride, a mix of potassium and chlorine, is the same solution that is delivered in the final step of most lethal injection procedures.

“The key component of Kevorkian's Mercitron (“mercy machine"), which was used far more often than the Thanatron, was not potassium chloride, but carbon monoxide. A deadly gas, the carbon monoxide was stored in a cylinder in the back of the van and connected to a mask that Kevorkian would fit over his patients' nose and mouth.

“Because he always required patients to make the final move, Kevorkian built a makeshift handle. Attached to the valve of the carbon monoxide canister, even the most disabled of Kevorkian's patients was able to turn the handle and release the gas.

“But carbon monoxide can take a little while to finish the job. Sometimes as many as ten minutes were required. Kevorkian, though, would often encourage his patients to ingest muscle relaxants or sedatives before the procedure so that they would stay calm while taking their last gasps of air. He never wanted them to experience any pain. As a doctor, he cared.”

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?

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.

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

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

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

GLOBE EDITORIAL ON END-OF-LIFE CARE

“At some point, US officials must stop letting a Sarah Palin sound bite influence whether terminally ill patients get a say in their own care.” (From the Boston Globe editorial “Help patients and doctors discuss end-of-life care,” April 30, 2011)

The Globe’s editorial: http://bo.st/jlqd7J

Rabbi Herman Blumberg of the CEC on the subject: http://bit.ly/l2ntjx

Rep. Barney Frank quoted on MSNBC’s “Morning Joe” on Wednesday:

"I think it's time for us to say that if people at the end of their lives want to simply say, “OK, this is it; this is not a meaningful existence’ -- I'm not talking about assisted suicide, I'm talking about the Schiavo case sort of situation where you don't force care on people who don't want it, and whose guardians don't want them to have it. You know, we spend an awful lot of Medicaid on the end of life. And this is not death panels; this is not the government telling you don't get anymore. This is the government not telling you you have to get this medical care whether you want it or not."

For more of the Frank interview, see The Hill: http://bit.ly/gUtfoT

For the segment on MSNBC: http://on.msnbc.com/kmSAG7

Ethical Guidelines on Genetic Research Results from the American Heart Association

The American Heart Association recently published ethical and practical guidelines on reporting genetic research results (2010). One of the task groups’ main findings was that researchers need to have more engagement with the community – how exciting! Specifically, they urged investigators to “engage the broader community when dealing with identifiable communities to advise them on the return of aggregate and individual research results.” We, the CEC (Community Ethics Committee), are a voice for the diverse, Boston communities and we provide feedback to Harvard’s teaching hospitals on issues very similar to this. It’s great to hear that one of the US’s top medical associations is seeking to collaborate in similar ways.
The report can be found in the journal, “Circulation: Cardiovascular Genetics” and is posted here: http://circgenetics.ahajournals.org/content/3/6/574.full?sid=3ecbb451-36d9-4d35-936a-e48de6016257 .

Learn more about the American Heart Association here: http://www.heart.org/HEARTORG/

MONEY & MEDICINE

Don't miss “Patients Are Not Consumers,” by economist Paul Krugman in Friday’s New York Times (http://nyti.ms/i2YwYf):

“There’s something terribly wrong with the whole notion of patients as “consumers” and health care as simply a financial transaction," Krugman writes. "Medical care, after all, is an area in which crucial decisions — life and death decisions — must be made. Yet making such decisions intelligently requires a vast amount of specialized knowledge.

“Furthermore, those decisions often must be made under conditions in which the patient is incapacitated, under severe stress, or needs action immediately, with no time for discussion, let alone comparison shopping.

“That’s why we have medical ethics. That’s why doctors have traditionally both been viewed as something special and been expected to behave according to higher standards than the average professional. There’s a reason we have TV series about heroic doctors, while we don’t have TV series about heroic middle managers.

“The idea that all this can be reduced to money — that doctors are just “providers” selling services to health care “consumers” — is, well, sickening. And the prevalence of this kind of language is a sign that something has gone very wrong not just with this discussion, but with our society’s values.”

How and Where Do We Prefer to Die?

National Health Care Decision Day, Saturday, April 16, asks that we talk with our families about how we want to be treated, if we become seriously ill and face the end of our lives.

No, this is not a new version of Sarah Palin’s ‘Death Panels!’ No, this is not a morbid preoccupation with a subject few want to discuss. Rather it an effort to enable us to retain control over our lives when life ebbs. From such discussions those who may have to care for us someday will not have to guess our response to difficult questions: about having machines keep us alive, even when the quality of life is gone; about dying in a hospital or at home; about our hopes for a dignified, pain-free peaceful death.

The recently issued Expert Panel on End of Life Report (Boston Globe Editorial, March 23, 2011) is a major contribution to helping our Commonwealth, and each us, to address these questions in a thoughtful and positive manner. If followed, the Panel’s recommendations provide the necessary building blocks for a cultural transformation in providing end-of-life care.

We are a group of ordinary citizens who meet regularly as an independent Community Ethics Committee to consider the ethical dimensions of bio-medical issues presented to us by a Consortium of Harvard-affiliated hospital Ethics Committees.

We are encouraged that the Report transcends what has become a destructive, and highly polarized political conversation about end-of-life care. Consideration of the economics of health care is pointedly resisted; the focus is exclusively on best care for the individual.

We welcome the Experts Report as consistent with values surrounding end-of-life medical care we vigorously affirm: the preciousness of every life, human dignity, the principle of individual autonomy and our right to make informed choices about the care we receive, reflecting our particular cultural, religious and personal values.

Autonomy in decision-making, the report asserts, requires full knowledge of the options which are available to a patient. Health care - givers are expected to fully inform patients and families of various treatment plans ranging from continued curative treatment to comfort care, free from pain and distress. Knowledge equals empowerment - what we, the public, want and deserve.

Many will say that they wish “to die at home” The Report underscores that more than physical location is hoped for: “...what people want and need as the end of life approaches are things that mattered most to them throughout life...that their wishes and values be respected; that their symptoms be well controlled; that their dignity is maintained; and that they can spend as much meaningful time as possible with those they most love.” (Expert Report p. 2)

Palliative care and hospice care at the end of life are welcome aids in achieving these goals. Palliative Care never means “giving up” on a gravely ill person. The opposite is the case as treatment turns from aggressive and often painful and/or ineffective medical procedures that may eke out a few more days of life, to compassionate care marked by alleviating pain and by providing psycho-social and spiritual support for the dying patiently and the family.

Similarly, Hospice Care is not meant just for the final few days of life when doctors say they have nothing more to offer a terminally ill patient. Hospice -- at home or in a hospice residence -- provides the practical support system where the quality of a person’s final weeks or months of life is assured. Hospice patients often live longer than those who continue to receive aggressive, life-extending treatment. There is also evidence that the grieving process for the family is eased with on-going hospice support.

Boldly, the Report urges funding for all Massachusetts residents for hospice enrollment via Mass Health.

There are many misconceptions about about end-of-life doctor-patient conversations, and about hospice and palliative care. Accurate information provided in the Report will aid in changing our focus from preoccupation with how we die to an emphasis on the quality of our lives until we die.

At every turn, the CEC champions the need to create a better balance between patient/ family on one side and the medical profession on the other, particularly at the end-of-life. This effort by respected health-care professionals is a giant step towards this goal.

Rabbi Herman J. Blumberg,
Member, The Community Ethics Committee, Division of Medical Ethics, Harvard Medical School.

Resolving Medical Futility Disputes

The paper “Resolving Medical Futility Disputes” appears in the current edition of the DNA Reporter, Official Publication of the Delaware Nurses Association. The piece is significantly longer than most blog posts here, but I’ve included it in full because it so clearly and evenhandedly explains medical futility, strategies for resolution, and why efforts at resolution so often fall short. The full newsletter is available at: http://bit.ly/hH8LwX

The authors are Donna Casey, Nurse Manager of the Wilmington Hospital ICU and Co-Chair of the Christiana Care Health System Ethics Committee; and law professor Thaddeus Pope, an authority on futility and author of the blog www.medicalfutility.blogspot.com.

As the authors conclude: “Providers need to be able to stand up for their patients. The tough work is designing a dispute resolution mechanism that can act with the real-time speed these cases demand, yet include sufficient safeguards to ensure due process protections like neutral and unbiased adjudication.”

Resolving Medical Futility Disputes

Donna Casey

Thaddeus Pope

Conflicts over end-of-life treatment are common. One category of such conflict is the medical futility dispute. Typically, in a medical futility dispute the surrogate decision maker wants to continue aggressive treatment for a patient but healthcare providers determine that such treatment is inappropriate. In this article we discuss: (1) the types of medical futility, (2) how medical futility disputes can be prevented, and (3) how such disputes can be resolved.

Two Types of Medical Futility Disputes

There are two types of futility: physiologic futility and futility as understood as a lack of benefit. Physiologic futility refers to something that cannot achieve the intended goal. For example, in the treatment of a common cold, antibiotics would be physiologically futile. The common cold is caused by a virus, and antibiotics are ineffective against virus. Therefore, antibiotics are futile in the treatment of the common cold. But while physiologic futility offers scientific certainty, it applies to few cases of treatment conflict.

The probability of a treatment’s effectiveness is often higher than zero. Therefore, the more relevant type of futility is futility understood as a lack of benefit. There is some chance that the treatment might work to some degree. But, for critically ill patients, the likelihood is often very low. Is the treatment worthwhile? Is it indicated? Answering such questions requires a value laden, benefits vs. burdens judgment.

One more precise definition of futility identifies medical treatment that:

has no realistic chance of providing a therapeutic benefit that the patient has the ability to perceive or appreciate, such as merely preserving the physiologic functions of a permanently unconscious patient; or

has no realistic chance of returning the patient to a level of health that permits survival without acute level of care or hospital setting; or

has no realistic chance of meeting the patient’s own goals as evidenced by an advance directive or other clear and convincing evidence.

A Medical Futility Case Study

Clinical examples of medical futility that fit this definition can be found in Intensive Care Units (ICU) across the country. Here is a case in point. AH, 96 years old, is admitted to the emergency department from her nursing home with complaints of shortness of breath and weakness. She has a history of dementia, breast cancer and has a stage III sacral decubitus ulcer. AH is admitted to the medical floor where her health continues to deteriorate. She is found to be in renal and cardiac failure. She has bilateral pleural effusions and becomes acutely dyspneic and hypoxic requiring intubation.

AH is transferred to the intensive care unit where her decision maker refuses to allow a biopsy of the pleural fluid. Providers suspect that the effusion is malignant. AH had refused to have her breast cancer treated 20 years ago when it was first diagnosed, so the decision maker surmised that she would not want to have it treated now. AH had an advance directive that stated: “I want my life to be prolonged as long as possible within the limits of generally accepted health care standards.” Despite the apparent contradiction between refusing to treat the malignancy and wishing all medical interventions to preserve life, other treatments were aggressively pursued.

AH remained a full code after progressing to complete renal failure requiring dialysis. She remained a full code even after progressing to long-term respiratory failure requiring mechanical ventilation including tracheostomy. AH was unresponsive to stimuli except deep pain and having severe generalized weeping edema with ubiquitous skin breakdown. Her cancerous breast had become a macerated open wound. She required artificial nutrition through a PEG tube, however she was unable to absorb the nutrition due to her poor health and suffered malabsorption diarrhea worsening her skin breakdown.

In short, there was no medical intervention that was going to cure AH. Medicine was not going to be able to return her to her previous state of health. Medicine was not even able to prevent her imminent death. AH’s decision maker, however, insisted on continued aggressive care, ventilation, dialysis, antibiotics, tube feeds, dressing changes and attempted cardiac resuscitation.

Based on our working definition of futility, one might reasonably conclude that continuing aggressive treatment for AH is futile. No medication or treatment has any realistic chance of providing a therapeutic benefit that AH has the ability to perceive or appreciate, based on her vegetative neurologic condition. Medicine was indeed merely preserving the physiologic functions of an unconscious patient. Additionally, there was no realistic chance of returning AH to a level of health that would permit survival without an acute level of care (in her case, critical care).

One may wonder, however, if continued aggressive care would meet the patient’s own goals as evidenced by her advance directive. Even if it truly were AH’s intent to continue futile care, is it appropriate to utilize extraordinarily expensive resources when no benefit can be realized? What can the bedside nurse, dealing with an unreasonable family member do to advocate for her patient, whom she believes is suffering with every nursing intervention; turning, suctioning, dressing changes etc?

Resolving Futility Disputes through Consensus Building

Once on this road, it is indeed a very difficult journey. Like elsewhere in healthcare, prevention is the best alternative. We suggest utilizing the following strategies to prevent and/or informally resolve conflict with families and decision makers.

1. Develop Goals of Care. Collaborate with patients and families to develop goals of care upon admission. Once established, patient and family should be kept abreast as to the progress towards these goals. When it is determined that patient will not be able to return to health or previous level of functioning, new goals of care should be developed in collaboration with the patient and family. Have one consistent professional be the primary communicator with the family. Teaching institutions with many residents and consultants contribute to conflicting messages and mistrust. When goals of care are agreed upon and it is clinically appropriate to do so, medically non-beneficial treatment may be limited or withdrawn.

2. Bring the Team Together to Communicate a Cohesive Message. If goals of care cannot be agreed upon, conduct an interdisciplinary meeting. Include: (1) key members of the health care team (medicine, nursing, respiratory therapy, other therapies as involved, nutrition, social work, etc.) (2) consulting physicians, (3) the patient’s primary care community physician, (4) the patient and/or decision maker, and (5) other family members and support persons as requested by the family. The purpose of the meeting is to facilitate open and productive communication so that all involved clearly understand the same information. The conference should be patient-centered and should cover the following:

A discussion of patient and family values and goals, medical status and prognosis, treatment options, the goals of medical care and the definition and implications of CPR and a DNR order.

A consultation to the Palliative Care Team may be helpful in managing these situations and should be considered.

A second medical opinion may also be helpful. Sometimes, conflict is related to personality or misinformation. Transfer to another physician or health care facility may be appropriate.

If the second physician concurs that the requested treatment is medically non-beneficial, that opinion should be communicated to the decision maker.

3. Consult the Ethics Committee. If the patient and/or decision maker continues to request non-beneficial treatment and conflict persists, then consult the ethics committee. In an advisory capacity, the Ethics Committee should make every reasonable effort to hear all sides of the conflict, identify ethically acceptable options, and facilitate resolution of the conflict. When possible, it is preferable that the attending physician who participates in the ethics consultation should remain the attending of record until the conflict is resolved.

Resolving Futility Disputes through Unilateral Action

Fortunately, the vast majority of medical futility disputes are resolved through these measures. Providers and families almost always reach consensus. Still, in a small but significant subset of cases, conflict remains intractable. When these preventive efforts fail, an organization must assess whether it is willing to endure the possibility of legal action.

The 1996 Delaware Health Care Decisions Act (HCDA) provides that life-sustaining medical treatment may be withheld or withdrawn from incapacitated patients only with the consent of an authorized decision maker, except in three circumstances, when treatment is: (1) “medically ineffective,” (3) “contrary to generally accepted health-care standards,” and/or (2) contrary to the provider’s “conscience.” But the statute defines these terms in such a narrow way that these exceptions do not apply to most futility disputes. Furthermore, even when these exceptions do apply, the statute requires providers to continue complying with treatment decisions unless or until the patient is transferred to another provider or facility. Since such transfers are almost never found, the statute effectively requires providers to comply with surrogate requests for aggressive curative treatment that they consider non-beneficial, burdensome, and even cruel.

Many providers feel that the HCDA does not sufficiently empower them to resist inappropriate treatment demands. Indeed, providers often feel as though they are torturing the patient. Still, they usually comply with surrogate decisions for such treatment due to fear of litigation. In short, the “decline to comply” provisions in HCDA do not provide an adequate mechanism for resolving intractable medical futility disputes.

Still, a separate HCDA provision is of some use. When a surrogate makes a treatment decision that clearly contradicts what the patient would have wanted, the provider need not comply with that decision. The HCDA provides that a surrogate must make treatment decisions “in accordance with the patient's individual instructions, if any, and other wishes to the extent known by the surrogate.” If the surrogate is unable to determine what the patient would have done or intended under the circumstances, then the surrogate's decision must “be made in the best interest of the patient.” In other words, surrogates must make decisions that reflect the patient’s values, preferences, or best interests. Otherwise, they act outside the scope of their authority. Surrogates who are not faithful agents can and should be replaced.

While effective and functional in some cases, surrogate replacement is hardly a complete solution to medical futility disputes. Most patients have not completed any advance care planning. Of the roughly 35% of Delawareans who have completed advance directives, those directives are usually unavailable when needed. And even when available, those directives usually fail to speak clearly to the patient’s current clinical circumstances. In short, there is often no evidence of patient preferences. Consequently, it is impossible to demonstrate any contradiction between those preferences and surrogate decisions. While we know, statistically, that few would want to live in an extremely compromised condition, particularly if cognitively unaware, providers often do not know what any particular patient is willing to live with. In such cases, there are rarely grounds to replace a surrogate requesting treatment that providers determine is inappropriate.

Providers need to be able to “stand up” for their patients. The tough work is designing a dispute resolution mechanism that can act with the real-time speed these cases demand, yet include sufficient safeguards to ensure due process protections like neutral and unbiased adjudication.

References

Delaware Health-Care Decisions Act, Delaware Code, title 25, sections 2501-2518 (1996).

Luce, J.M., “A History of Resolving Conflicts over End-of-Life Care in Intensive Care Units in the United States,” Critical Care Medicine 38, no. 8 (2010): 1623-29.

T.M. Pope, “Medical Futility Statutes: No Safe Harbor to Unilaterally Refuse Life-Sustaining Medical Treatment,” Tennessee Law Review 71, no. 1 (2007): 1-81.

T.M. Pope, “Legal Briefing: Medical Futility and Assisted Suicide,” Journal of Clinical Ethics 20, no. 3 (2009): 274-286.

T.M. Pope & E.A. Waldman, “Mediation at the End of Life: Getting Beyond the Limits of the Talking Cure,” Ohio State Journal on Dispute Resolution 23, no. 1 (2007): 143-195.

D.J.C. Wilson & J. Savulescu, “Knowing When to Stop: Futility in the ICU,” Current Opinions in Anaesthesiology 24 (2011), DOI: 10.1097/ACO.0b013e328343c5af.

Organ donors - denied for insurance? Really?

Over 100,000 people in the US are currently waiting for an organ.  You'd think that being a donor would be lauded - especially since donor health 6 years after their operations tends to be the same as non-donors.  And yet, after their most selfless act, organ donors may have some serious problems:  they may be denied medical insurance.

The Washington Post states,

"Insurers sometimes claim that the donation is equivalent to a preexisting medical condition and either reject an application outright or offer coverage with a very steep premium... People who have health insurance through big companies generally aren’t affected, but those who try to find coverage on the individual market or who have coverage through a small business may run into this problem."

Read the article here:
http://www.washingtonpost.com/national/health/organ-donors-may-be-denied-health-insurance/2011/03/29/AFaMLN1D_story.html

Patients with DNR (Do Not Resuscitate) orders more likely to die after surgery

A just-released study by Yale University finds that patients who had DNR orders were more likely to die after a surgery.  Yes, these patients were more likely to be sicker, but the study's author found that controlling for sickness (and other factors) did not even the scales. One of the researchers, Dr Roman, was quoted in the Courant:

"Of course the question is 'Why is that?'" she said. There may be other "non-spoken" factors, she said.


"Do doctors treat them differently? Do they try less hard? I don't think this really answers that question, but it does raise those questions."

The Courant also stated:

"The study further found that patients with DNR orders also suffered a greater percentage of complications due to surgery and required longer hospital stays."

Here's a concise definition of DNR by the Courant:

"Do Not Resuscitate is a legal document signed by either a patient or the patient's familiy, stipulating that 'extraordinary means' — such as putting the patient on a respiratory machine — should not be administered should the patient suffer a cardiac or respiratory arrest."

Here's a link to the article if you'd like to learn more about it:

http://www.courant.com/health/connecticut/hc-weir-do-not-resuscitate-0419-20110418,0,247026.story

Does Genetic Testing provide TMI?

I am sitting here listening to NPR's interview of the Pulitzer Prize winning authors and hearing their story about Children's Hospital in Wisconsin and the case of Nicholas and the medical team who decided to map his entire genome in order to diagnose his otherwise terminal disorder. (http://onpoint.wbur.org/2011/04/21/journal-sentinel-pulitzer) Which reminds me of a posting I saw earlier this week about a survey indicating "parents want gene testing" (http://www.bbc.co.uk/news/health-13099090)(http://blogs.wsj.com/health/2011/04/18/parents-kids-and-genetic-testing-for-adult-onset-diseases/) that was reported in the April Pediatrics journal.

Serious questions arise when these kinds of issues are raised - can the genetic information be truly definitive (in Nicholas' case, it was serendipitous that his DNA showed an abnormality); will genetic sequencing actually inform therapeutic decisions; will it change the course of a patient's disease? This recurring issue in medical ethics - the troubling intersection of what can be done with what should be done - is especially vexing when the psychological risks of too much information are so challenging to measure. What is known is impossible not to know . . .

The NPR piece speaks about relying on parents' consent to obtain detailed and potentially troubling information on behalf of a child - fueled by the dire need to get any and all diagnostic information to help their seriously ill child survive. But the Pediatrics article and survey reveal a far more troubling concern about relying on parental consent to obtain genetic information - information obtained on behalf of a child about the genetic likelihood of developing adult-onset diseases. Perhaps that is too much information for parents to have about their children? Perhaps this is too much information for children to know too soon? Is there such a thing as too much information?

Children's Hospital in Wisconsin has created a Committee that screens parents' requests for the diagnostic use of genetic sequencing. Not only does the request need to be presented by two physicians but the diagnostic information must be "actionable" - providing a therapeutic option. But the "science" of this genetic testing technology - what can be done and under what circumstances - must be tempered by the "ethics" of this technology - what should be done and what is really promoting the patient's, the family's and the wider community's "good"? (One caller, a Dana Farber research nurse, spoke of her concerns about equity and access to such testing when studies show minorities and the vulnerable are less likely to have access to such "high tech" sources of information.)

These are hard questions. I am glad Nicholas is doing better; I am worried that there may be other children for whom genetic sequencing will not provide the possibility of a real therapeutic option and yet highly-charged and sensitive information will be known, forever not to be unknown.