Autonomy run amok

 

A hospitalist asked one of the members of our hospital’s ethics committee for help. “We’re providing more and more futile care for people at the end of their lives,” he said. “How can we stop?”

How, indeed? We find ourselves providing an increasing number of hi-tech, expensive interventions at the end of life that do little more than sustain the body functions of a patient who is dying: treatments that do not treat anything, but merely sustain physical processes, that keep the chest going up and down while organ systems are irreversibly shutting down.

There are many causes of this: one is autonomy. The ethical imperative to honor patients’ autonomy dictates that we seek the patient’s wishes regarding whether or not to continue various interventions. However, typically in these situations, the patient is in no position to declare his or her wishes regarding treatment, so it falls to a family member to make decisions for the patient.  Thus, what often happens is that the physician asks the family member to discontinue the burdensome or disproportionate treatment for the patient. But think about what they are asking: in deference to autonomy, they are asking a family member to make the decision to “pull the plug” on their loved one. Whether or not it’s a medically appropriate thing to do, nobody wants to make the decision that will lead to the death of a loved one. The burden for making such decisions should rest primarily on a primary care physician who knows the patient and has his or her trust (NOT a hospitalist who works shifts and just met the patient last Tuesday).

Autonomy is a good thing and a proper balance to paternalism. But it is not an absolute good: it can lead to physicians abrogating their responsibility to make the hard decisions regarding patient treatment, and placing an impossible burden on family members.

On the other hand is the concern that if physicians make such decisions, they would base them on something other than the best interests of their patient. Regulations that went into effect October 1st, which fine hospitals for Medicare patients who are re-admitted to the hospital within 30 days of discharge, could conceivably lead to decisions to end treatment for patients because they are a financial risk to the hospital rather than for medical reasons.

There are many who agree that the paternalism-autonomy pendulum has swung too far in the direction of autonomy. It is time for physicians to stop ducking distressing decisions by pushing them on to patients and their families. But at the same time, they (we) have to show patients that they are truly committed to their patients’ lives. The willingness of some physicians to actively promote the death of patients (as opposed to removing burdensome technological interventions that prolong the dying process) justifiably gives patients pause when they consider giving them authority to make life-and-death decisions.

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Gene CombsJon Holmlund, M.D.Joe GibesJohn Kilner Recent comment authors
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John Kilner
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John Kilner

You capture the tension between two concerns here well. If the physician is to play a larger role in such decision-making, how can the patient be protected from insufficient treatment? Might this spotlight the need for a set of clear medical-ethical criteria (as clear as the circumstances allow) describing the conditions under which discontinuation of life-sustaining treatments is acceptable? A lot of work on such criteria has been done over the years–which is not to say that every health care institution has adopted a set of criteria in order to give patients the confidence to entrust more decision-making power to… Read more »

John Kilner
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John Kilner

Although there are various federal and state task forces who have attempted to provide guidance here, one place where these issues have been addressed is in initiatives to develop model advance directives (CBHD has one, and there are a number of others such as Five Wishes). The goal of such documents is to give patients (typically those who do not want over-treatment) some standard language to provide for their physicians, to help them determine when to stop treatment. You are right–this is not the place for great detail, but for general guidelines.

Jon Holmlund, M.D.
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Jon Holmlund, M.D.

Some musings on your exchange: 1) I wonder whether the real point isn’t defining the physician’s appropriate loyalties (working to secure the public’s trust in doctors in general), and putting institutional hedges around those things (like cost) that can compete inappropriately. Affirming that a physician’s primary responsibility is to his individual patient seems like it will be more difficult in an age when more or even most physicians will work on salary for large systems, and care decisions are driven increasingly by coverage and payment decisions that are not made at the bedside. That means that the individual doctor subordinates… Read more »

Gene Combs
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Gene Combs

A thoughtful post by one of my models for compassionate practice. This issue gets thornier all the time, and you are right to point out the new financial pressures in our increasingly corporatized (profit-driven)healthcare system.