By Janice Firn, PhD, LMSW, HEC-C
The American Society for Bioethics and Humanities (ASBH) annual meeting is October 11-14th in Baltimore, MD offering a robust schedule with many palliative care related sessions. I can’t attend them all and choosing between sessions can be difficult. As chair of the ASBH hospice & palliative medicine affinity group, a full-time clinical ethicist, and former palliative care social worker I’m looking for sessions that advance my knowledge/skill set, challenge my assumptions, have a diversity of viewpoints, and lead me to reflect on my own practice in new ways.
Here’s a snapshot of the sessions on my conference agenda:
“Should we all die asleep? The problem of the normalization of palliative sedation” Hans Van Delden
8:15-9:30am (Thursday, October 12th)
Why I’m interested: I have observed a growing trend to use deep continuous sedation in intensive care at the end of life even when not medically necessary for symptom control. I’m increasingly concerned that the default is now to prescribe a medication rather than to spend the necessary time and emotional energy to educate patients and families about the dying process. Are we normalizing the wrong thing? Learning about this familiar clinical practice in a different cultural, social, legal, regulatory setting may challenge my assumptions and help me to (re)evaluate the practice with new eyes.
“Where you stand depends on where you sit: Navigating medical aid in dying across state lines” Liz Blackler, Yesne Alici, Cindy Bruzzese, Danielle Doberman
2:30-3:45pm (Thursday, October 12th)
Why I’m interested: Like the first session on palliative sedation, this session places a familiar practice in a different setting and context. Presenters come from different healthcare institutions in jurisdictions with different medical aid in dying laws. I’m a pragmatic person, so how ethics is operationalized within contextualized constraints – real life policies, insurance limitations, state laws, etc. – are what make the work of applied ethics so fascinating to me. This presentation appears grounded in clinical experience and has clinical application.
“End of life decisions and pregnancy: post-Dobbs sanctioned death sentences” Hannah V. Carpenter
4:00-5:15pm (Thursday, October 12th)
Why I’m interested: My state has a pregnancy clause (a provision in the law of over half US states that invalidates an individual’s advance directive if they are pregnant). It isn’t standard practice to talk with patients about this clause when completing advanced directives. I have been involved in the care of several people who are pregnant at the end of life and there was a lack of knowledge among providers regarding pregnancy clauses and disagreement about whether they apply to a specific situation. I’m interested in learning more about the landscape and different approaches to facilitate further discussion at my own institution.
“Medical assistance in dying for people with mental disorders: recent developments from a participatory action research project in bioethics involving key stakeholders” Caroline Favron-Godbout
4:00-5:15pm (Thursday, October 12th)
Why I’m interested: I’ve seen how powerful and inclusive participatory action research can be and I’m excited to hear about its application here. The presentation contains alternative viewpoints on medical aid in dying from a diversity of presenter backgrounds and experiences, including the voices of people living with mental illness. Moreover, medical aid in dying for people living with mental disorders is scheduled for March 2024 in Canada. This work is proactive and grounded in patients’ perspectives and needs.
“Survival and long-term outcomes of children who survived after end-of-life decisions in the neonatal intensive care unit” Beatrice Boutillier
8:00-9:15am (Friday, October 13th)
Why I’m interested: As with other sessions on my list, this session seems grounded in clinical experience and applicable to clinical practice. Sometimes children survive longer than expected after withdrawal of life-sustaining treatment (some to discharge). This is often an area of conflict and emotional distress occurring at my own institution. It’s a bit pithy, but my one of my adages is that expectations are like the Titanic, once set on course they don’t shift quickly and attempting to do so often has disastrous results. The more we can improve the upstream process of expectation setting the less we are in a position of damage control downstream.
“Consoling the grieving: palliative bereavement care and the ethics of support conversations” Ben Sarbey
9:30-10:45am (Friday, October 13th)
Why I’m Interested: Can “consoling” be a useful clinical practice technique (separate from active listening)? We recently reviewed ethics consultations at our institution. One of the most common contextual features was communication challenges between patients/families and staff. Palliative care and ethics professionals are often the go-to people for communication skills. While we may be skilled in communication, it is dangerous to think we’ve arrived at communication nirvana – there is always room to grow.
“The final act of care: Accuracy in cause of death statements for socially stigmatized deaths” Johanna Wellesley
9:30-10:45am (Friday, October 13th)
Why I’m interested: I’ve been involved in conversations where providers are undecided or conflicted about cause of death documentation. For example, a situation where a patient prior to their death asked that their HIV diagnosis not be disclosed to family and yet, the family will receive a copy of the death certificate. I’m hoping the presentation will allow for further reflection on the topic that I can bring back to providers at my institution.
“What we do when we allow families to decline brain death exams” Karola V. Kreitmair
9:30-10:45am (Friday, October 13th)
“Ethical controversies in the clinical practice of determination of death by neurologic criteria” Ariane Lewis, David Mangus, Thaddeus M. Pope
1:15-2:30pm (Saturday October 14th)
Why I’m interested: I am regularly involved in brain death cases at my institution, and I am on a Society for Critical Care Medicine taskforce to develop a brain death tool kit (containing brain death specific resources and education). I’m interested in hearing different perspectives as we develop this tool kit. Attending two separate presentations on the same topic, to hear different perspectives and experiences, allows for a more 360 degree look at the issue.
“Medical interventions for children with severe neurological impairment: Moving from discrimination and discretion to promote the good of the patient” Jenny Kingsley, Jori Bogetz, Katie Moynihan, Aaron Wightman
3:15-4:30pm (Friday, October 13th)
Why I’m interested: At my institution we care for many children with trisomies and their families. I am often involved in addressing conflicts about the appropriateness of specific interventions especially as they relate to quality of life determinations of children with severe neurological impairments. This presentation seems to address issues of bias with marginalized populations, discusses communication skills, and represents diverse stakeholder viewpoints.
This list is far from exhaustive, and I know I’ve left off some great sessions!
See you at the conference!
Janice Firn, PhD, LMSW, HEC-C is Chair 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.