By Janice Firn, PhD, LMSW, HEC-C
The American Society for Bioethics and Humanities (ASBH) annual meeting is September 18th-21st in St. Louis, MO. With over 25 sessions related to palliative care it can be hard to choose between them. As outgoing chair of the ASBH hospice & palliative medicine affinity group, a full-time clinical ethicist, and former palliative care social worker, this year I’m looking for sessions that provide diverse perspectives, address real-world problems through empirical bioethics research, and equip palliative care professionals to engage more effectively in the ethical dilemmas they encounter in practice.
Here’s a brief (but by no means exhaustive) look at sessions for your consideration:
“How the Other Half Dies: Health Disparities and Patient Perceptions of Clinician Bias in End-of-Life Care Recommendations” Alexandra A. Taylor, Nina Laing, Benjamin Krohmal, Michael Pottash
Thursday, 9:15 – 10:15 am
Why it’s of interest: As a palliative care professional, I’m aware of the literature on racial disparities in end of life care. We need empirically based strategies to address and reduce disparities. I expect this session to offer insights on repairing trust to directly address patients’ justifiable concerns about bias in end-of-life care. I also hope it will serve as an opportunity for greater self-reflection about my own clinical practice.
“Clinician Experience of LVAD Deactivation” Arielle Fried, Shikha Kapil, Michael Pottash, Anirudh Rao, Angela Villalobos
Thursday, 10:45 – 11:45 am
Why it’s of interest: LVAD deactivation requests from patients who are perceived by the healthcare team to be “doing well” or “LVAD success stories” is not infrequent and is a source of moral and ethical distress for many healthcare professionals. Anecdotally, palliative care and ethics services have encountered resistance from some members of the healthcare team who do not agree with deactivation. What I know experientially, this session explores empirically. I’m excited to read the resulting paper and include it in conversations on this topic at my own institution.
“‘I Know What I Feel:’ Caring for Patients with Sickle Cell Disease in a Post-Cure World” Shameka Thomas, Consuela Albright, Kristin Walters, Jada Wiggleton-Little
Thursday, 3:00 – 4:00 pm
Why it’s of interest: This panel uses a Black Bioethics Framework and features perspectives from patients, nurses, and sociologists to make recommendations for how to address interpersonal and structural barriers to adequate pain management for patients with sickle cell disease. At my home institution, palliative care is often consulted to assist with pain management because of inadequate institutional structures and knowledge deficits. Although alternative structures are lacking, palliative care professionals often feel ill-equipped to assist in these situations and may not be well-suited to address chronic pain. Equipping palliative care professionals with strategies to effectively advocate for system-level change may offer long term solutions for improving outcomes for patients with sickle cell disease.
“Beyond Boundaries: Navigating MAiD in LGBTQI+ Oncology Patients – Ethical Considerations and Humanistic Perspectives” Kelly Haviland
Thursday, 4:30 – 5:30 pm
Why it’s of interest: While the presentation focuses on access to Medical Aid in Dying, it’s a good reminder for us clinicians that we may be less likely to discuss terminal illness with vulnerable or marginalized patients. The presentation may serve as an opportunity for self-reflection and practice-reflection more broadly, beyond MAiD and cancer.
Hospice and Palliative Care Affinity Group Session: “Are You Prepared to Meet the Pediatric Palliative Care Patient Who Presents an Ethics Challenge?” Brian Carter
Friday, 7:30 – 8:30 am
Why it’s of interest: As hospice and palliative care professionals, even without formal ethics training, we’re often called upon to address ethical issues, especially as they relate to end-of-life care. Comprehensive children’s specialty hospitals are few, thus it is common for community hospitals and adult-focused teams to care for children at the end of life who have complex ethical issues. This presentation presents strategies to prepare palliative care professionals to address pediatric-HPM and ethics concerns.
“Integrating Trauma-Informed Principles in Neonatal End of Life Care: Lessons and Opportunities from an Interprofessional Project” Erin J. Keith-Chancy, Stephanie Kukora
Saturday, 10:15 – 11:15 am
Why it’s of interest: This session will discuss the value of trauma-informed principles as a potential framework for interprofessional teams, engaging in trauma-informed care as a shared mental model, and the ethical responsibility of high-functioning professional teams to engage in trauma mitigation. Although the presentation uses the context of a NICU, these practices are broadly applicable and essential skills for professionals in palliative care and ethics.
VSED as a path to MAiD: Stepping stone or quicksand? Robert Macauley, Paul T. Menzel, Kevin Dirksen, Lisa Brodoff
Saturday, 2:00 – 3:00 pm
Why it’s of interest: MAiD is not yet legal in my state, but it is on the horizon. However, I’ve worked with several patients who have pursued VSED. This panel provides philosophical and practical considerations and explores how access may differ based on institution type – all things we will soon be facing.
See you at the conference!
Janice Firn, PhD, LMSW, HEC-C is Chair-Emeritus of the ASBH Hospice & Palliative Medicine Affinity Group, a former palliative care social worker with a PhD in palliative care, and the fulltime clinical ethicist for a busy academic medical center.