Compassionate care for a young adult at the end of life may present many difficult ethical issues. Consider for example Sarah, a 19-year old young woman, admitted for what her team believes may be her final stay at the hospital that has treated her throughout a 5-year struggle with lymphoma. Sarah literally has grown from adolescence to adulthood in the company of her care team, which has also supported and comforted her parents and family. Sarah and her parents have expressed the wish to her care team that they spend as much of the time remaining together as possible. They have agreed to do everything possible to ease the dying process when the time comes and a DNR order is in place.
Sarah wishes to leave the hospital to attend a rock concert – which could shorten her life due to exertion or her compromised immune system. Sarah’s parents have historically disapproved of Sarah attending rock concerts, and now feel that attending the concert will shorten the time they will have with her. Sarah demurs and insists on going to the concert. The care team is divided over whether she should attend and what, if anything, they should do. A pediatric NP who has cared for Sarah for years has requested an ethics consultation to help Sarah, her family and the care team address Sarah’s desire to attend the concert. A bioethics consultant can work with all involved to build consensus toward an ethically and clinically viable resolution.
A legally competent adult, Sarah clearly has the right to exercise her autonomy and leave the hospital to attend the concert. But, simple recourse to Sarah’s status and corresponding legal and ethical rights does not take into account the ethical position of Sarah’s parents and her care team. Although the legal or ethical rule that applies in these situations may be clear in the abstract, the particular context demands a nuanced approach responsive to the profound emotional needs of everyone involved.
Many issues are in play. Because a young adult patient, like Sarah, may in some respects resemble a dependent adolescent and in others an independent adult, questions related to patient autonomy are particularly challenging. Members of the healthcare team, the patient and the patient’s family grapple with the principle of patient autonomy, each from their own perspective. On the surface, Sarah’s status as a legal adult cuts off challenges to her wishes. But, what if her insistence on attending the concert is rooted in an adolescent opposition to her parents’ contrary wishes? Given their history, Sarah’s parents might well believe this is so and view their ethical position as that of parents of a minor child, which indeed they were less than two years ago. Sarah’s medical team struggles with accepting the risks that are attached to acceding to Sarah’s exercise of her autonomy when balanced against their perceived obligation to provide beneficial treatment. Here again the ethical duty of beneficence rarely supersedes the principle of respecting the autonomy of a competent patient. And yet, in the context and knowing Sarah as they do, some members of her team question Sarah’s insistence on attending the rock concert.
In cases like Sarah’s, the bioethics consultant’s sensitivity to each stakeholder’s position in the process will bring underlying concerns to light and create the best chance for reaching reasonable principled consensus. A psychiatric consult may help careful exploration of why Sarah wants to attend the concert. The perspective and insight of having a pediatric medical team attuned to maturing young people should be greatly valued. Some might suggest that raising this issue with Sarah is disrespectful of her autonomy. However, not to raise the issue would ignore the uncertain nature of a young adult’s level of maturity depriving Sarah of a truly informed decision. Whatever the results of this inquiry, it is impossible to dismiss her parents’ position; they are integral to Sarah’s personhood and to the context. Even if Sarah’s parents must accept predominance of Sarah’s autonomy, a structured, sympathetic forum for expressing views can help them achieve the best possible recovery from this tragic situation. Similarly, to dismiss the medical team’s discomfort with Sarah’s wishes diminishes legitimate concerns. A bioethics consultant can invite the team’s suggestions for mitigating the risks of attending the concert as one way of respecting their concerns and ameliorating the strain that they experience in this case. Meaningful, authentic involvement of the stakeholders enhances the validity of the final result even if some disagreement remains unresolved.
One lesson in these cases is clear; both form and substance matter a great deal in achieving principled results while practicing compassionate care.
Alexander Zimmer holds a J.D. from Case Wester Reserve University School of Law and a B.A. degree in Sociology from New York University. He was a Medical Corpsman in the United States Army Reserve. He is currently a candidate in the Einstein-Cardozo Master in Bioethics. For many years, Mr. Zimmer has actively advocated for patient-centered care in a variety of forums.