CAPC Chronicles

My CAPC journey started 10 years ago. I was a CAPC fan before I was CAPC staff. I would attend CAPC’s National Seminar every year and hang on the words of the speakers. I always returned home with new ideas on how to improve our palliative care program. A decade later, I can say that I now count some of those speakers amongst my colleagues and friends. Instead of working to help one team succeed, I hope our work can help them all—and that is a surreal and humbling thought.

At the inaugural CAPC National Seminar, I heard Diane Meier talk about the role of physicians in philanthropy. I had always felt that it was a dirty word best separated from the pure practice of clinical care. But Diane exhorted us to "put on your pearls" and ask for the support we deserve. She convinced me that good people want to give their money to good causes, and that if we're not out there garnering support for our work, someone else is. That's just one of many crucial lessons in leadership and financial stewardship that CAPC has imparted that I've tried to share through my career—a career that has been shaped in multiple ways by CAPC.

My first memory of CAPC occurred in 2005, when I was a fellow at the Medical College of Wisconsin (MCW). David Weissman and colleagues were hosting a Palliative Care Leadership Centers (PCLC) training at MCW, and they invited me to sit in on it. PCLCs are workshops for organizations that are trying to start/improve their palliative care programs. Back in 2005, it was definitely about how to start a program from scratch! I had never seen anything quite like it, and I remember being amazed that this sort of program existed in the structured way that it did. This was not ‘consulting’: this was a deliberate, organized effort to scale change at a national level. That vision has characterized all of what CAPC does, and why it continues to be so important!

CAPC has been instrumental in the evolution of our service to this community. My mentor, Dr. Robert Milch, founded a palliative care unit within our local hospital in 1976. We understood the cause and advocated a case at a time. That said, we needed CAPC as a catalyst to help sophisticate the effort by capturing the outcomes and creating the case statement. Fifteen years ago, we launched a home-based palliative care program for both children and adults, and today we are a community-based hospice serving 1,200 patients a day, two-thirds of which are cared for within our palliative care programs. Thank you CAPC—it worked!

My understanding is that CAPC started out scrappy—just a small group of passionate geniuses, led by Dr. Diane Meier, who were done tolerating needless suffering simply because the health care system had forgotten to see patients as human beings. This group knew that palliative care could transform care for people living with a serious illness; and somehow, it was not only their job to build out the model, but also to distill their knowledge into a comprehensible road map that others could follow. The field didn’t really have an evidence base. It didn’t have payment. And if name recognition in palliative care is challenging now, it was probably inconceivable in 1999. Yet, somehow, Diane and the other pioneers of palliative care built the foundation. They defined services. They estimated costs and drafted templates. They tried to answer every practical question and facilitate connection so that no one would have to do this work on their own. (I can’t imagine they slept much.) This work meant that, by the time I arrived at CAPC some 15 years later, palliative care had evolved from a countercultural approach to an established medical specialty—and has grown even more in the 10 years since. Even though it can be challenging to work in health care, one of the things that I love most about CAPC is that we have never forgotten who we are supporting and why. We do this work so that all health care professionals and organizations who reach out to us are *that much better* equipped to help patients and families avoid suffering. Palliative care restores humanity into a health care system that can be deeply dehumanizing. Working at CAPC has been a privilege, knowing that we get to be a part of that—for now, and many years to come.

I went to my first CAPC conference in 2009. I was so inspired by the energy and passion for growing our field. Ten years later, I was invited to have lunch with Dr. Diane Meier after she gave a presentation in Rochester. I had just been appointed Medical Director of my program. I think Diane could sense my burnout from across the room. She gave me her card, and through monthly phone calls, she mentored me, picked me up, and gave me strength. Now just five years later, we opened up our very own palliative care unit in the hospital. CAPC continues to inspire and empower me every day to bring the best palliative care to my community.

One of my most memorable moments with CAPC was actually at my very first CAPC National Seminar, more than 10 years ago. I was in line getting some food, and I happened to turn around and there was Chris Strayhorn. Chris and I started chatting about the field and the program he was leading in Michigan. After that, we connected again, and we've stayed connected over the years, helping each other as colleagues through problem-solving. At future CAPC Seminars we would meet up with other folks, and I think that's the magic for CAPC. It’s the incredible ability to bring people together in a way where organic connections can happen. And then they last for a long time.

In its earliest years, CAPC was a small but mighty startup. I’ll never forget when I first met COO, Carol Sieger, who said before she hired me in 2002, “I have to tell you that we only have funding for another three years, so we’re not going to grow old here together.” What a laugh since we did! With its mission, its faculty and staff, and its incredible ability to innovate, CAPC was always destined to be a success. And now 25 years later, what a success story there is to tell! CAPC has created change throughout the U.S. health care system, ensuring that every American has access to quality palliative care when they need it. Nothing short of miraculous. Congratulations CAPC, and here’s to the next 25!

I am blessed to say that Dr. Diane Meier once said to me “CAPC birthed me.” Here is my journey. I was born out of the CAPC family before there was the Center to Advance Palliative Care. All I am, have become, and continue to grow and serve humankind to fulfill my life purpose to relieve suffering, is because of one fateful day, “the prequel” to CAPC. I was a hospice nurse before palliative care existed. Hospice was my first professional love. There was nothing that came more naturally, had my sense of calling of life purpose, than the care for the dying. However, there comes a time in everyone’s career that we look beyond what more we can do to continue to grow in their professional service and life journey. My hospice physician recommended investigating the first palliative care advance nurse practitioner program in the country at New York University. Deborah Sherman was one of the original Project Death in America Faculty Scholars Fellows awarded to start the first palliative care advanced nurse practitioner program in the U.S. and certification exam. Her vision, passion, and inspiration were contagious, describing the future of this new groundbreaking specialty yet to be recognized but was the future of health care. I applied and was accepted into this visionary program. I was given the choice of our assigned clinicals and as fate would have it, I was the only one that volunteered to go to the first hospital in the country that had a palliative care service, Diane Meier’s palliative care service at The Mount Sinai Hospital. I was in the company of “THE GOATs” (greatest of all time), which started it all. Dr. R. Sean Morrison ran the team meeting every morning, and I had to sign off with Diane Meier. I remember going into Diane’s office and she had a calming soft voice, yet intense energy that engulfed me. Never had I experienced a team member being treated as an equal collaborator that was valued. We were more than a team. We were the parts that were greater than the whole. That is how we worked creating true relationships with the people we cared for and brought a new paradigm of practice never done in the medical field. They were not seen as “patients” but unique individuals caring for physical, mental, emotional, and spiritual needs. The team advocated and provided care that was their human right. I knew I found my path and life purpose. My career progressed running palliative care services, becoming the first palliative care nurse practitioner hired by a Catholic health system, as a C-Suite Executive, Health System Director, Palliative Care. My role was to fulfill the mission of Catholic health care in the relief of suffering by assessing, designing, and implementing evidence-based, standardized, and sustainable palliative care programs across the health system. My challenge was where do I go to get this information? This was never part of an established curriculum; our field was in its infancy. The answer, the CAPC National Seminar. Year after year I attended. Each year my toolkit grew my “How To Guide” in standardizing palliative health care system design successfully because of CAPC leadership staff, Brynn Bowman, and Maddy Jacobs. I knew CAPC was invaluable and led the first largest health system to obtain CAPC Membership. I have led multiple health systems, implemented over one hundred programs, trained hundreds more with thousands of CAPC curriculums. Diane once asked me, “Why do you keep coming back, you know everything, we birthed you remember?" My response was, “CAPC is my “go-to for everything.” The keys to innovation for “Palliative Care Everywhere” are given to all. New generations will continue to be born from CAPC to relieve suffering in the world. What is a better life purpose than that?