Author Summary Much of the literature on aid-in-dying (AID) has drawn heavily on rights-based ethical and legal frameworks that emphasize patients’ rights of self-determination in end-of-life decision-making. Less attention has focused on how terminally ill people actually experience such putative rights once they are legally authorized. This analytic essay draws on findings from the Vermont Study on Aid-in-Dying, an ethnographic study of the implementation of AID in Vermont (2015-2017). First, I show that terminally ill people can face a range of barriers to accessing AID in permissive jurisdictions, and that access to AID is mediated by various inequalities endemic to US health care, as well as some that are unique to AID. I then build on these findings to examine the utility of the concept of justice for public health scholarship on AID. By integrating empirical, ethical, and policy analysis, I reframe rights-based frameworks that emphasize the role of individual choice and decision-making at the end of life. In doing so, I draw attention to health care justice as a neglected issue in public health perspectives on AID.
Abstract On 19 July 2016, three medical organisations filed a federal lawsuit against representatives from several Vermont agencies over the Patient Choice and Control at End of Life Act. The law is similar to aid-in-dying (AID) laws in four other US states, but the lawsuit hinges on a distinctive aspect of Vermont’s law pertaining to patients’ rights to information. The lawsuit raises questions about whether, and under what circumstances, there is an ethical obligation to inform terminally ill patients about AID as an end-of-life option. Much of the literature on clinical communication about AID addresses how physicians should respond to patient requests for assisted dying, but neglects the question of how physicians should approach patients who may not know enough about AID to request it. In this article, I examine the possibility of an affirmative duty to inform terminally ill patients about AID in light of ethical concerns about professional responsibilities to patients and the maintenance of the patient–provider relationship. I suggest that we should not take for granted that communication about AID ought to be patient-initiated, and that there may be circumstances in which physicians have good reasons to introduce the topic themselves. By identifying ethical considerations that ought to inform such discussions, I aim to set an agenda for future bioethical research that adopts a broader perspective on clinical communication about AID.
Mara Buchbinder, Dragana Lassiter, Rebecca Mercier, Amy Bryant, Anne Drapkin Lyerly
Abstract “It’s almost like putting salt in a wound, for this person who’s already made a very difficult decision,” suggested Meghan Patterson (an alias), a licensed obstetrician-gynecologist whom we interviewed in our qualitative study of the experiences of North Carolina abortion providers practicing under the state’s Woman’s Right to Know Act (House Bill 854; 2011). The act requires that women receive counseling with state-mandated information at least twenty-four hours prior to obtaining an abortion. After the law was passed, Patterson worked with clinic administrators, in consultation with a lawyer, to write a script to be used in the state-mandated counseling procedure. She and her colleagues took particular steps to mitigate the effects of what she described as HB 854’s “forced language” – such as referring to the “father of the child.” While HB 854 stipulated that patients must be informed of the medical risks associated with the particular abortion procedure as well as those of carrying the child to term, Patterson’s script made explicit the magnitude of comparative risks, emphasizing that the risks of carrying a pregnancy to term are substantially greater than the risks of an early-term abortion. She felt that these contextualization strategies helped to facilitate trust and rapport in a clinical care situation that proved relationally and morally challenging.
In this article, we take up and expand on this point by elucidating an empirically grounded approach to ethically justified care when health care providers face legal or institutional policy mandates that raise possible moral conflicts. Our approach builds on recent bioethics discourse addressing conscience in the practice of medicine. While the concept of conscience has broad philosophical underpinnings relating to moral judgment, agency, and discernments of right and wrong, debates in bioethics have tended to engage the concept primarily vis-à-vis rights of conscientious objection or refusal. Here, we suggest a broader frame for thinking about claims of conscience in health care. Our approach draws on the feminist bioethics and the ethics of care literatures to highlight how providers may be motivated by matters of conscience, including relational concerns, in the active provision of certain forms of care. What emerges are two possibilities: not only conscientious refusal to comply with a policy mandate but also conscientious compliance – working conscientiously within a mandate’s confines.