I woke bleary eyed at 4 am for my 4:30 am shuttle pick up on October 20, 2015. The shuttle would take me from Columbia, Missouri to St. Louis airport where I was supposed to catch a flight to Denver. At Denver, I would board a flight to Jackson Hole to attend the much awaited Kathleen Foley Palliative Care Retreat. As a junior investigator with a PhD in Public Health and research interests in reducing health disparities, I was looking forward to this golden opportunity.
The shuttle driver actually arrived at 4:15 am because he had several pickups. My fellow riders to St. Louis were clearly in some other time zone, chattering away in the darkness in English and what sounded like an Eastern-European language, over the 2-hr journey. Sleepless, I wondered if I might meet a fellow passenger on the Denver-Jackson Hole flight who was heading to the same retreat. When we landed at Jackson Hole, the marching band was conspicuous by its absence. Surely, a plane that arrived nearly full with luminaries of the palliative care world deserved a welcome from a marching band or a resounding 21 gun salute?
The retreat eventually started after the attendees had been coaxed to actually enter the hall rather than linger at the doorway over the ‘hellos’ and ‘great to see yous’. My eyes darted from name tag to name tag. They were all there! The names of the authors in my literature review folder concerning end of life and palliative care, had metamorphosed into actual humans who were walking and talking to each other around me. My literature review had miraculously come alive! The official welcome remarks revealed the wide diversity in attendees that included 3 JDs, 61 Medical Doctors/DOs, Doctors of Philosophy, Registered Nurses and Social Workers.
In the first presentation, I learned that high intensity end-of-life care was not unique to the United States, with other developed countries also providing aggressive care. The parallels to everyday behaviors such as ‘do you like vanilla or chocolate ice-cream?’ and the interesting experiments derived from Economics and Psychology generated several interesting ideas about advance care planning and how that might be encouraged. The presenter concluded that we need to build better advance directives and motivate patients to complete them, engage physicians and encourage them to overcome their tendency to procrastinate.
Over dinner, I sat with the AAHPM staff and scholarship/award winners and learned more about them and then crashed in a huge suite that had more doors than my apartment. The next morning started with an excellent breakfast and a very well-organized poster presentation. I think more meetings need to adopt this method of small-groups led by leaders. The groups moved systematically from poster to poster, thus creating a different kind of small-group learning.
The breakout groups offered a wide variety of learning themes. The first presentation in the group I attended focused on breast cancer caregiving. One of the elements that struck me most was that most caregivers for breast cancer patients are men unlike other conditions where caregivers are female. In other presentations, I learned about Dignity Therapy and how doctors may undermine the impact or weight of their or caregivers’ decision-making preferences on that of the patients’. Learning about the challenges of the different presenters in data collection and hearing suggestions from the audience to resolve these was a good learning experience.
There was a great presentation ‘Demystifying the NIH Process’ on getting funding, with Program Officers from NIH available to share their perspective and talk about trends in funding and important dos and don’ts. I am sure experienced and novice grant seekers like me found this excellent presentation very useful. I listened closely which was very important especially given that the handouts were printed in what seemed to be font size 4. I later followed this up with one-on-one conversations with the Program Officers to get feedback on some ideas.
Just when I thought I had attended all possible excellent presentations, I got to hear Rebecca Aslakson. I had met her earlier this year through a mutual colleague at Johns Hopkins. A recommendation letter from Rebecca enabled me to attend the retreat. Rebecca’s extremely stylish presentation on her research trajectory, peppered with humor and insight into patient care challenges and triumphs, led us smoothly from one topic to another. It captured the history of palliative care in the Intensive Care Units, among surgeons and referenced books on palliative care and the surgery culture. Rebecca shared that there are different moral economies and different bottom lines in medicine. Death is the enemy in surgical cultures. In contrast, for Intensive Care Unit nurses, suffering is the worst enemy. The “covenant” between patient and doctor is part of a surgeon’s identity.
Palliative care-related experiences of surgical Intensive Care Unit patients and families led Rebecca to research into peri-operative care and involving patients via PCORI mechanisms. Since people lose decision making capacity for at least some time, the research team proposed advance care planning (ACP) and did a scan of ACP instruments. This led to research on content and instrument-based approaches, studying ACP conversations, preparing story boards and eliciting public feedback through venues such as a stall at the Maryland State Fair. Many patient-doctor conversations about ACP are couched in terms of faith, which led her to start the UNITED project with churches for using religious language and input into ACP conversations.
Finally, I attended a Mock Study Section which mimicked how actual reviews are done. Excellent examples of sample grants were provided and there was a rich discussion about the grants’ strengths and weaknesses.
I had arrived at the retreat bleary-eyed and left wide-eyed, excited at the vast range of possibilities in research that can improve quality of life for patients and caregivers. The well-rounded experience covered everything from research ideas to how to fund them and provided invaluable networking opportunities. The retreat made me inspired and enthused with the dedication and brilliance of the presenters and I got new ideas on how I could contribute to patient-centered palliative and end-of-life care.
Nidhi Khosla, PhD, MPH was chosen as one of six AAHPM Research Scholars this year and received funding to participate in the Annual Kathleen M. Foley Palliative Care Retreat and Research Symposium of the National Palliative Care Research Center (NPCRC). She is an Assistant Professor at the Department of Health Sciences, University of Missouri, Columbia. Her research involves palliative and end of life care preferences of the growing number of South Asians (persons with origins from India, Pakistan, Bangladesh, Nepal, Sri Lanka, Bhutan and Maldives) in the U.S.