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Tragedy and Choice

As the AP and the Indianapolis Star reported last week, Tim Bowers, a 32-year-old man from Decatur, Indiana, was hunting deer from a tree stand last week and fell 16 feet, breaking his neck and leaving him dependent on a ventilator and most likely paralyzed for life.  The next day, doctors took him off the ventilator to ask him whether he wished to continue, given the likely prognosis, and he chose to stay off the ventilator.  He died a few hours later, surrounded by family and friends.

The story first made local, then national news in large part due to the mixed feelings it engenders.  On the one hand, this appears to be a case where a patient’s doctors respected his autonomy and choice, which many found praiseworthy.  He was asked what he wanted, he answered, and he got what he asked for.  On the other hand, many wonder whether he was responding emotionally or even irrationally to the situation, whether medical professionals at this point could confidently predict his future limitations, and thus whether it was right to “ask the patient” at this time and in this way.  In the end, any opinion about all this involves a large degree of speculation, due to the limited information we have about a largely private event.

In a couple recent interviews with local news stations I said much the same.  Unfortunately, this comes off as the sort of “two-handed philosophy” (“On the one hand…”, “On the other hand…”) that is as common as it is unsatisfying.  But it is also appropriate.  The case of Tim Bowers is truly a triumph of autonomy, a case where he had a chance to make a decision.  In addition, people who knew him have asserted that he was consistent in never wanting to live in a wheelchair. 

At the same time, did he truly comprehend what life as a paraplegic or quadriplegic would be like?  Paraplegics often say that healthy people – or themselves when they were younger and not paraplegic – underestimate the quality of life of a paraplegic.  Was Bowers overwhelmed by the severity of his accident, the life changing and tragic consequences, in a way that clouded his judgment?  Did he have enough information to decide? 

And, at a deeper level, if these were problems with his decision making, then how long should his doctors have waited to ask him what he wanted?  What information should he have been given?  Should he have been kept on a ventilator for weeks or months, perhaps even put though a procedure to create a tracheostomy (a hole in the throat, necessary if a person remains on the ventilator for more than a week or two), before he was deemed to have absorbed enough information, or comprehended his situation, to be able to make a decision?  Down this road lies justice delayed, and thus denied.

The fact that the doctors took out his endotracheal tube as soon as they did suggests that the family may have specifically requested this, to ask him what he wanted sooner rather than later, perhaps because his previously stated wishes suggested that he would not want this. 

While the case is unusual, it raises many of the same questions about autonomy, beneficence, rationality, and informed decision-making that many of us at the Center study in our research and teach in our work with students, doctors, and researchers.  And at its core Bowers’ accident was a tragedy, for a man and his loved ones, and there was no easy answer for how to respect his wishes and thus provide truly “patient-centered” care.

Peter H. Schwartz, M.D., Ph.D.
IU Center for Bioethics

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Remembering Dr. Jay Katz

Many of you may already have learned of the recent death of Dr. Jay Katz. For those who were not aware, here is a link to the PRIM&R website which contains several memorial tributes.

It is difficult to put into words the impact that Katz had on the field of bioethics generally, and research ethics in particular. It is not a statement of hyperbole that he established the field of research ethics, both through his initial membership on the Tuskegee Study ad hoc panel in 1972, his later membership on the Advisory Committee on Human Radiation Experiment in 1995, and his groundbreaking volume Experimentation Involving Human Beings. His list of accomplishments extends far beyond these scholarly and advisory pursuits of course. He literally gave a voice, a philosophy, and a gravitas to this area of human endeavor. His work on informed consent famously described in his book The Silent World of Doctor and Patient provided one of the first systematic treatments of the subject of informed consent—and should perhaps be required reading for all clinicians, not just doctors.

For researchers who bemoan the perceived regulatory ‘burdens’ of submitting protocols to IRBs, for university administrators who worry about site visits and compliance, for companies that struggle with how best to design studies to test new drugs or devices, for students and trainees who are required to take courses or tests to demonstrate competency in research ethics—these worries pale in comparison to the worries that initially motivated Katz: the threat of potential harm to human beings involved in an activity that was not primarily in their best interest.

Perhaps on this day of national thanksgiving, all of us who work in health care and the life sciences and who care about the moral dimensions of what we do, we will give thanks for the life of Jay Katz. — Eric M. Meslin, Ph.D.

Hello world!

The Indiana University Center for Bioethics was established on the campus of Indiana University-Purdue University Indianapolis (IUPUI) in July 2001. The Center’s mission is to provide leadership to advance the academic and public understanding of bioethics; to inform the development of social and public policy in health, research, and related fields; and to provide support for the provision of ethics services at Indiana University hospitals. The Center will fulfill its mission through research, education, and service as a university-wide entity.