When Fulfilling a Professional Obligation Causes Moral Distress for Physicians in Intensive Care Units
By Daniel T. Kim & Wayne Shelton
There was a time when some of the most high-profile bioethical issues involved physicians trying to save lives and provide treatments that patients or their families didn’t want. Karen Ann Quinlan (1975), Elizabeth Bouvia (1986), and Nancy Cruzan (1990) involved decisions about withholding or withdrawing life sustaining treatments, leading to an ethical and legal consensus about a patient’s right to refuse treatments and be allowed to die. However, in subsequent years, there have been several high-profile cases—Baby K (1994), Baby Sun (2005), Jahi McMath (2013)—with the opposite dynamic, in which the clinicians want to stop treatments, often because of medical futility, but the families do not.
In our ethics consultation service at the Albany Med Health System, an academic medical center in New York state, some of our most challenging cases involve parents wanting treatments for their child that, to the care providers, seem not to be in the child’s best interest. In our recent article, we consider a vulnerable 6-month-old who has suffered severe hypoxic brain injury due to a cardiac arrest. A tracheostomy, feeding tube, and ventilator keep him alive, and although he’s not brain dead, he’s neurologically devastated. His physicians say that, at best, he’ll develop severe cerebral palsy and, for the rest of his life, be dependent on others for daily activities and be unable to communicate with anyone. The almost certain outcome, however, is that the child will die despite aggressive treatments. Yet, the parent insists on continuing the treatments to keep him alive, hoping for a miracle.
For the care team, they know they can provide treatments that will provide marginal physiological effects. But their question is, are those marginal effects in the child’s best interest? Does the parent really understand how dire their child’s condition is or fully appreciate how trying to keep him alive will require ongoing aggressive interventions that will require aggressive pain management? Is the parent in psychological denial about their child’s overall condition, and are they really making decisions for this child’s best interests? For those who are skeptical of the parent’s decision making, how far do we allow their genuine or willful ignorance of the situation to stand before their right to continue as the authorized surrogate is questioned? There are so many questions, and yet, the answers are very difficult to determine.
Ultimately, is it in this child’s best interest to be kept alive or not? The question needs to be evaluated in terms of the child’s medical interests, in relation to the relative harms and benefits of continued treatment, on which physicians are recognized experts. But further, those medical interests also need to be weighed in terms of the patient’s nonmedical interests— as a child of parents with a particular set of values, experiences, and attitudes toward a life worth living. These are what ethicists call value-based concerns, and for good reasons, society asks parents to do their best to make these judgments for their children. Unless a parent is clearly being abusive or neglectful, the current ethical consensus is that they should not be deprived of their right to decide what is or isn’t in their child’s best interests.
Physicians in the vast majority of such cases, therefore, have an ethical obligation to respect the parent’s decision to continue treatments, barring abuse or neglect. They should order aggressive pain management and treatments when necessary. Yet, to them, the treatments can often continue to feel wrong even if they are working at a physiological level; keeping artificial life support (like medical ventilation) going can feel like a meaningless, if not wanton, imposition on a highly vulnerable child with a dire prognosis. Being obligated to continue treatments in these situations can then cause intense or chronic feelings of what clinicians now commonly call “moral distress,” which is often accompanied by other intense feelings, such as guilt, frustration, or resignation. If not addressed by the clinicians themselves, repeated experiences of moral distress over time may lead to burnout.
How should clinicians address and respond to such instances of moral distress in the intensive care unit? In our recent article, “When Fulfilling a Professional Obligation Causes Moral Distress: A New Evaluative Approach,” we argue that it is important for physicians not to dissociate from these experiences but to engage in evaluative reflections about them. We propose the moral concept “agent-regret” as a resource for evaluative reflections on moral distress and show that the competence of managing complex ethics cases is as essential to being a good doctor as technical and knowledge-based skills. This competence is essential to how clinicians can cope and mitigate such distresses in tragic circumstances while fulfilling their ethical obligations. We also consider the important responsibilities of institutions for creating a culture in which such habits are encouraged and supported.
Article details
When Fulfilling a Professional Obligation Causes Moral Distress: A New Evaluative Approach
Daniel T. Kim, PhD, MPH, Wayne Shelton, PhD, Linda Breslin, DPS, RN, and Megan K. Applewhite, MD, MA
DOI: 10.1177/08850666241285861
First published: September 19, 2024
Journal of Intensive Care Medicine
About the Authors
