I experienced four days of intense scientific meetings with some of the most amazing Support Group Leaders. We shared our thoughts and summaries of the sessions during our commute to and from the hotel, and over meals. While we all shared a connection with myeloma, we all had very unique gifts. I learned as much from the leaders as I did from the experts.
There were several presentations on disparities in myeloma this year. I was able to attend a couple and read papers of others. There is one point that I’d like to share for thought.
Kedar Kirtane’s study, “Racial Disparities in End-of-Life Care Planning and Hospital Utilization: A Single Center Retrospective Study,” found that racial and ethnic minorities have lower likelihood of having advanced directives. I share this because as support group leaders I think that’s something we can have an impact on. Several support group leaders have shared with me that advanced directives are presented routinely in their group meetings. For those of us who don’t have this as a topic, we should consider including it.
Better understanding the different types of advanced directives may help to eliminate fears and apprehension around the topic. The support group setting may provide a safe space for talking about end-of-life care. By hearing from those who have advance directives in place, then perhaps others may be provided the needed permission to do the same.
I plan to continue my quest to better understand and eliminate disparities in myeloma.