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Patient autonomy and professional expertise in decisions near the end of life: commentary on Francis Kamm
  1. Robert D Truog
  1. Correspondence to Dr Robert D Truog, Boston Children's Hospital, Harvard Medical School, Bader 633, 300 Longwood Ave., Boston, MA 02115, USA; Robert.Truog{at}childrens.harvard.edu

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In her essay, Francis Kamm discusses a broad range of issues surrounding care near the end of life, as examined through the lens of three position papers and two studies.i Her comments remind me of the value that good philosophical analysis brings to the work of clinicians; Kamm accurately and perceptively uncovers areas of ambiguity and outright inconsistency that are very relevant to how we approach the many challenges that arise in providing care to those who are near the end of their lives.

This being said, position papers and research studies provide only a narrow window into understanding what actually happens during the care of patients. My goal in this commentary is to build some clinical context around Kamm's observations. In particular, I will focus on a recurrent theme in Kamm's essay, which she summarises as follows: ‘While professionals… typically begin with calls to attend to preferences of a person…, they seem to have aims beyond guiding care according to those preferences and view these aims as having objective value. In particular, while a ground given for attending to patients’ preferences is that views on what constitutes a good death vary, many professionals have a particular view of what a good death is and hope to promote it for what they see as patients’ own good.’

These tensions arise, I believe, from a pervasive sociological trend towards elevating the values of individual autonomy and choice above other considerations. Our culture encourages each of us to chart our own path in life, and to live by our own values and commitments. And we believe, of course, that this should extend to the choices we make around how we die.

The problem, however, is that individuals in our society have been largely shielded from the process of dying. I am always struck by how many of my medical students have never been present for the actual death of another person before experiencing it for the first time on a clinical rotation (as was the case for me). And yet we harbour an assumption that each of us should be able to plan for this moment, and should have authority to script how it occurs, even among those who have almost no knowledge about what might be involved.

As such, physicians are often caught in a state of cognitive dissonance, which is reflected in the inconsistencies that Kamm has examined and exposed in these documents. On the one hand, we are told that the days of ‘the doctor knows best’ are a thing of the past, that medical decisions can never be made on grounds that are entirely objective and that these decisions must always be shaped with respect to the patient's values and preferences. On the other hand, many physicians hold a covert belief that sometimes the doctor really does know best, and that actions based on the values and preference of the patient can lead to objectively disastrous outcomes for everyone involved. In addition to this epistemic issue about what decision is best, doctors and nurses also see themselves as having moral agency in these situations, and feel an independent responsibility to avoid actions that may be harmful to others.

My specialty is paediatric critical care medicine, and I have been at the bedside for the deaths of seemingly countless children. As such, I have lots of experience with what makes the dying process go well and what makes it go badly. But many parents also have very strong views about how they want things to go around the death of their child.

Some time ago, we had a toddler-aged little boy who was dying of lung failure. He had been on a ventilator for days, and to keep him comfortable we were giving him continuous infusions of sedative medications to keep him asleep. When it became clear that he was not going to recover, meetings with his parents resulted in the decision to remove the ventilator, recognising that this would lead to his death within a few minutes.

His parents, however, insisted that we stop the sedative medications so that he would be fully awake at the time the ventilator was removed. They wanted to be able to talk with him, comfort him and say their good-byes. While the clinicians were sympathetic to the parents' desires, they argued that this was not feasible, since in the absence of heavy sedation the child would experience profound air hunger, gasping to breathe and feeling like he was being suffocated.

One of my colleagues was in charge, and although he tried to convince them that this was a bad idea, they remained insistent. Ultimately, he reluctantly acquiesced to the plan, on the grounds that while he had an obligation to offer his best medical advice, the decision was ultimately up to the parents. Sadly, it went very badly. As the sedation wore off, the little boy became panicked, desperately struggling and gasping for air. At this point, his parents wanted him to be put back to sleep as quickly as possible, but unfortunately it took several more unbearable minutes before this could be achieved.

In hindsight, everyone agreed that this should not have been attempted. And while the ethics of parental decision making differs from that of patients deciding for themselves, for patients of all ages it is often the family who are called upon to help make on-the-spot decisions about how best to orchestrate the dying process.

Kamm makes clear at multiple points in her essay that she is not categorically opposed to physicians taking the prerogative of insisting on best practices in providing care near the end of life. She is recommending, however, that we need to be more clear about when we are truly deferring to the preferences of patients and families, and when we are asserting professional authority about the limits of what we are willing to do.

In my view, the many ambiguities, inconsistencies and contradictions that arise in these documents are not fundamentally attributable to careless or sloppy thinking, but rather reflect a deep ambivalence in our society about the deference that should be given to the expertise of clinicians in providing care near the end of life, and the reasonable limits that ought to imposed on the preferences and desires of patients and families. The balance between these is not clear, but Kamm is certainly correct that transparency and clarity are necessary first steps in making progress on resolving these thorny issues.

Footnotes

  • Competing interests None declared.

  • Provenance and peer review Commissioned; internally peer reviewed.

  • i Citation to Kamm's paper

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