Reasons to Give

Our daughter and sister Alyssa was extraordinary in her passion, sensitivity, care, and courage. Like countless others who have lost a loved one, our family dedicated itself to creating a legacy to honor Alyssa's lifelong values, character, and personal struggles as she faced death from more than 20 years of anorexia nervosa. Establishing the Alyssa L. Bogetz Educational Fund within AAHPM is Alyssa's legacy.

Alyssa passed away in the summer of 2021 at the age of 36. In her last few months, Alyssa came to understand and accept that she could no longer live with her disease. As she continued to lose weight, each member of the family struggled to reflect on her courage and accept her decisions. Alyssa was directed to outpatient palliative and home hospice care under the hospice rubric which was very rare for those with mental illness - even one where death is due to its medical consequences. The care was compassionate, but it lacked nuance in understanding the unique aspects of death from a primary mental illness.

As our family discussed Alyssa's legacy, it was clear that we needed to engage her values and dedication to medical education with her life experience, particularly Bogetz Family at its end. Our daughter, Jori, a member of the Academy, recognized that the fund's purpose dovetailed with AAHPM, its members, and the patients it serves. The Alyssa L. Bogetz Educational Fund provides for at least 10 years of AAHPM educational activities that catalyze through, discussion, debate, and learning about the role of hospice and palliative care in the context of those suffering from mental illness.

Our family is honored that this is the first such fund at AAHPM. The Academy welcomed our family and the legacy we wanted to create. In less than 4 months, the fund was created and supported through the generosity of our family, relatives, friends, members of AAHPM, and others who knew Alyssa. It was Alyssa herself who wanted these discussions to begin so that those unfortunate enough to follow in her footsteps might benefit.

As soon as Dr. Sean Morrison made the opening remarks for this year’s Kathleen Foley Research Retreat in beautiful Torrey Pines Lodge in San Diego, I felt like I was home. Prior to coming to the retreat as an American Academy of Hospice and Palliative Medicine Research Scholar this year, I expected to have the opportunity to build my palliative care research network with a national cohort of peers and mentors committed to advancing the evidence base of palliative care. What I didn’t expect were the deep personal connections, the shared mission, and the fun!

After arriving at our beautiful lodgings and settling in, we began the work. The opening remarks set the tone for our next two days: our field is changing and evolving. With the transitions going on at the Palliative Care Research Cooperative (PCRC) and the National Palliative Care Research Center (NPCRC), we are facing new challenges and new opportunities. Whether it be through more formalized National Institutes of Health (NIH) recognition of palliative care research, through the expansion of palliative care into new institutes and spaces, or the reinforcement of the strong relationships we have in aging and oncology; the future is bright, but our work is cut out for us!

Taking this in, I took a good look around the room for the first time and realized that these were the leaders who would be defining the future of the field and taking on these challenges. That sense of awe—of being in the room with the senior scholars who had created palliative care research and with the junior scholars who would be stewarding it through the next phase of our discipline’s growth—settled in firmly and never faded over the two-and-a-half wonderful days of the retreat.

Following the evening’s talks, we enjoyed a reception and dinner outside looking out over the Pacific Ocean and the San Diego sunset. I had the opportunity to meet other American Academy of Hospice and Palliative Medicine (AAHPM) Research Scholars, American Cancer Society Grantees, and NPCRC Kornfeld Scholars. Meeting (or reuniting with those I already knew!) these accomplished, passionate, palliative care researchers helped me put the evening’s discussion about the future of palliative care research in context. The talent and heart of this group were remarkable—as was the diversity: PhDs, MDs, nurses, physical therapists, social workers, and many others were among our ranks studying palliative care across the lifespan from the perinatal period to centenarians and beyond.

After dinner and a good night’s sleep, we reconvened for a packed day 2. Our morning was focused on hearing the works in progress of prior cohorts of AAHPM research scholars, ACS grantees, and Kornfeld scholars. We had the opportunity to participate in round-robin poster sessions and to hear longer works in progress from grantees. The breadth of topics and methodologies reminded me of how deep our pool of talent and passion is in palliative care—and of the incredible potential for collaboration in advancing our field.

Following the posters and works-in-progress talks, we were treated to a presentation by Dr. Monica Lemmon, a neonatal neurologist sharing her work on neurologic prognostication for neonates. As an adult palliative care physician and psychiatrist, I wasn’t sure what to expect from this talk. But as soon as Dr. Lemmon started speaking, I was rapt. Even with subject matter far from mine, the compassion, curiosity, intellectual rigor, and narrative of growth that Dr. Lemmon instilled in her talk reminded me why I love palliative care research.

At lunch, I had the opportunity to formally meet my fellow AAHPM research scholars as a distinct cohort. We were instantly linked by the shared experience of being junior investigators in hospice and palliative medicine. That link was incredibly powerful and validating; many of us work in departments or divisions where we are unique and may not have a rich palliative care research community. Connecting felt generative and powerful. Sitting together as a cohort reinforced the bonds we had been starting to build from the beginning of the conference.

Later in the afternoon, we reconvened for small groups to discuss challenges and updates in palliative care research. I attended a session about institutional transitions to learn more about academic career development. The session was a vibrant mix of folks across career stages sharing wisdom and ideas. Following the session, I was able to get personalized mentorship about moving my career forward from several experts in the field. My fellow research scholars attended some of the other sessions and we had the opportunity to share the wisdom we gained from our sessions with one another over a cocktail hour and dinner outdoors.

Before I knew it, we were at day 3 and the end of the conference. We convened for our final plenary on mentorship by Dr. Bob Arnold who did a masterful job ensuring we would keep learning and growing beyond the conference by giving us a list of books to read to become better mentors and scholars. A talk on mentorship—especially one as excellent as this—was the perfect way to close out the conference.

I can’t believe the retreat was only two-and-a-half days long! It was one of the richest experiences I’ve had professionally. The information sharing was so exciting, but the sense of community and identity was even more valuable. Being in a group of people across career stages, disciplines, and institutions who shared a deep passion for palliative care research felt like a pivotal experience for my identity formation as a palliative care investigator. I return home with new ideas, new collaborations, and a deepened sense of my professional self. I’m incredibly grateful to the AAHPM for the Research Scholars program that made it possible for me to come here, to the mentors and colleagues I met and learned from, and to our palliative care community that continues to grow and innovate.

In 2007, I began an incredible 13-year journey both personally and professionally as the CEO of AAHPM. I was familiar with hospice and palliative medicine early in my career from working for other medical specialty societies and the Alzheimer’s Association as well as from gerontology courses in college.

I started with AAHPM just as hospice and palliative medicine was being recognized as a subspecialty and fellowship training programs were being developed. Within a few year years, the field would certify more than 7,000 physicians and create slots for 350 trainees per year. It was a time of incredible growth, visibility, and success. The AAHPM team grew during that period as well.  Despite all this success, there continues to be a need for more professionals in hospice and palliative care. I am inspired and encouraged by the many amazing volunteer leaders who created and facilitate our Leadership Forum and other Academy leadership programming.

As my time was transitioning from a leadership role with the Academy to one with the Association Management Center, I wanted to give back to AAHPM and show my gratitude and commitment to the field. People asked how they could thank me for my years of service as I was preparing to transition into a new role. I asked them to join me in supporting the AAHPM Leadership Scholars Fund.

So many people in hospice and palliative care have forged their own leadership pathways. Several generous foundations funded leadership development at critical stages of the field’s early years and I saw firsthand the impact that had on people within the field throughout their careers. Many said they would not have been successful without that support. I wanted that to continue so that others could benefit from mentorship, programming, and connections through AAHPM.

I believe many of us have been forever changed by the experiences we’ve had within AAHPM. There are times in our lives when we “receive” and times when we “give.” The Academy is a unique medical specialty society because its members care deeply and genuinely about not just what they do but also one another. It is the home for a special group of people who provide exceptional care to individuals living with serious illnesses. This work and organization is so very important now and in the future.