Wednesday, September 28, 2011


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.”)

Tuesday, September 27, 2011


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.”


Monday, September 19, 2011

Thou Shalt Do No Harm

The morning email from 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. (

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 “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.” (

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.

Tuesday, September 13, 2011

"The Futility of Futility"

From Thaddeus Pope’s blog (

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." 

Friday, September 9, 2011

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  and click on “A Community Conversation.”

Sunday, September 4, 2011

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