Vulnerable Patients, Autonomy, Well-being, and Death

Abstract

At the beginning of our lives and often at the end, we have important medical decisions made for us by proxy consenters including family, legal guardians, and/or medical professionals. This places us in particularly vulnerable and dependent positions that essentially ‘bookend’ our lives. As a bioethicist, I view as among my duties working to improve the experience of medicine for vulnerable populations as well as advocating for protections for such patients against the poor decision-making of others (and, in rare exceptional cases, even themselves). I’ve opted for a ‘covering concept’ model for my dissertation, which consists of three sizeable papers on related topics. The vulnerable populations I focus on in this project are children, the mentally ill, and the elderly. All three of these papers touch on issues surrounding the authenticity and limits of informed consent, tensions between respecting patient autonomy and promoting patient well-being, and how best to face death.

In How to Face the Future: A Model for Delayed Disclosure of Incidental Findings from Pediatric Whole Genome Sequencing, I argue that in cases of widely-focused pediatric genetic testing, consent for release of a limited class of incidental findings should be delayed until the pediatric patient or research subject reaches the age of majority. I also propose a model for delayed disclosure in such cases. In Early Palliative Sedation Therapy and the Challenge of Psychological Suffering, I make the case that current end of life palliative care practices in the United States rationally commit us to the moral permissibility of palliative sedation to alleviate refractory psycho-existential suffering, even in cases where death of the patient is far from imminent. In Cardiac Pacemakers and Withdrawal of Care at the End of Life, I make the case that deactivation of cardiac pacemakers is morally distinct from typical instances of withdrawal of care at the end of life. I argue that in highly dependent patients, pacemaker deactivation is morally akin to voluntary active euthanasia, while in non-highly-dependent patients, pacemaker deactivation only serves to lessen the patient’s quality of life unnecessarily.