Moral Distress and the Disability Paradox

This post is part of our monthly series featuring the experts of the Center for Bioethics community. The thoughts reflected in this piece are the authors’ individual, expert opinions and do not necessarily reflect the position of the Center for Bioethics.

Moral distress is a significant problem in health care. Its persistence among health care workers has carved away at the staffing numbers of hospitals. Nurses, physicians, and advanced practice providers all feel strapped - prevented from doing what they know is right. Institution limitations like policies, laws, lack of social support systems outside the hospital setting, and hiring practices are a significant aspect of the phenomenon of moral distress. Culture and values also play a large role in moral distress. 

The phenomenon of providing too much care at the end of life is a significant cause of moral distress among healthcare practitioners. While there might be institutional limitations that determine what kind of agency practitioners have when facing distress caused by providing too much care at the end of life, the cause of the conflict is due to wider cultural beliefs about the role of medicine, suffering, and life with disability, and not just institutional constraints. 

Disability is not often talked about in the moral distress literature, but ideas about living with disabilities are intimately bound up with the concept of moral distress. The potential suffering that disability will cause is an ever-present consideration in end-of-life decision making. This is especially true in the pediatric sphere where distress from the phenomenon of providing too much care is particularly acute. 

A study by Solomon et al found that “a majority of critical care attending physicians (80 percent), [residents] (78 percent), and critical care nurses (69 percent) agreed with the statement, “sometimes I feel we are saving children who shouldn’t be saved (Solomon et al. 2005).” This statement is bound up with cultural ideas about what it means to live with disability and judgments about quality of life. What counts as a child worth saving is determined by what we think children ought to be able to do in order to live a good life and become happy adults. 

A recent study reports that 82.4% of U.S. physicians believe that people with significant disability have a worse quality of life than nondisabled people (Iezzoni et al. 2021). However, many people who have significant disabilities report that they have a good or excellent quality of life. This phenomenon is called the disability paradox (Albrecht and Devlieger 1999).

The disability paradox reveals that personal experience with disability defines our view of the world and our relationships. Living with disabilities can change how we think about “good health.” In medicine, good health is defined as the proper functioning of the body - everything is in working order. Disability is the presence of dysfunction in the body - leading to pain or difficulty doing things. Those who live with disabilities find that life with bodily dysfunction does not necessarily mean that the idea of “good health” is abandoned. Rather, the definition of health shifts to an understanding of balance. Living with disability, from diabetes to rare genetic conditions, is about seeking balance through managing the body. Disability reveals that our quality of life largely depends on caring and loving relationships - and is not reducible to how well our body systems function. The disability paradox shows us that physicians are not always able to imagine “good health” beyond the boundaries of medicine. In fact, they “misimagine” that life with significant disability is worse than those living with disabilities claim it is.

The disability paradox is important to consider when talking about moral distress. Distress that arises from concerns about providing too much care at the end of life might be mitigated by exploring what role living with disability plays in our understanding of quality of life.  

The disability paradox also reveals that, as John Lantos writes, “moral distress does not always indicate ethical appropriateness (or vice versa).” The experience of moral distress at the decision to honor a parent’s wish to pursue restorative measures for a child with significant disability does not necessarily mean that parent’s decision is unethical. It does mean that the parents and medical providers have different beliefs about the kind of quality of life one can experience with significant disability.

The disability paradox teaches us that even though many clinicians care for people with disabilities, clinicians do not often understand what it means to live with significant disability. There’s a significant difference in beliefs about quality of life for those with disabilities  and this difference can lead to experience of moral distress for clinicians. 

Our current approach to addressing moral distress consists of debriefs which focus on sharing experiences and developing coping skills. It is likely that these debriefs could benefit from examining the role that beliefs about disability play in the experience of distress. Engaging with our perceptions of people with disabilities and listening to the experiences of those living with significant disabilities is key to navigating the role that ideas about disability play in moral distress.