In celebration of 25 years serving the profession, the American Academy of Hospice and Palliative Medicine (AAHPM) asked its 5,000 members to nominate who they think are the leaders – or Visionaries – in the field. They then asked members to vote for the top 10 among the 111 nominated.

“This program recognizes key individuals who have been critical in building and shaping our field over the past 25 years,” noted Steve R. Smith, AAHPM executive director and CEO. “These individuals represent thousands of other healthcare professionals in this country that provide quality medical care and support for those living with serious illness — each and every day.”

The Visionaries – 14 women and 16 men – are physicians, nurses and hospice pioneers such as British physician, nurse and social worker Cicely Saunders, credited with starting the modern hospice movement, and Elisabeth Kübler Ross, author of numerous books including the groundbreaking “On Death and Dying.” Five elected officials were nominated and one of them, former President Ronald Reagan, was named a Visionary for signing into law the Medicare hospice benefit in 1982.

Many of the visionaries will be sharing their thoughts about the field and who inspired their work. We’ll be posting them over the next several months. Today’s post is from Timothy E. Quill, MD FACP FAAHPM, Professor, University of Rochester Center for Experiential Learning in Rochester, NY.

Who has most influenced your work and what impact has he or she had?
My initial medical school interview was with Art Schmale who had trained as both an internist and a psychiatrist, and worked with George Engel. The University of Rochester’s biopsychosocial (and spiritual) approach provided a systematic structure to my training at the University of Rochester, but also is at the core of my two chosen fields of primary care and palliative care. I regularly rounded at the Cancer Center with Art as a medical student, where we would have wide ranging conversations with patients receiving treatment and their families, focusing on their symptoms, hopes, fears, and concerns – whatever was on their minds. I learned firsthand about the nature of suffering and of human resiliency. When I had finished my training in internal medicine, I did a Medical Psychiatric Liaison Fellowship in Rochester where we would address patients’ medical issues on the psychiatric floors and their psychiatric issues on the medical floors. All this was excellent preparation for a career in primary care, but Art also guided me toward also becoming a hospice medical director. Hospice was just starting out in those days, and we largely were flying by the seat of our pants without much data. I learned from Art about the extraordinary bond and connection that can happen when you join as a medical partner with patients and their families as they face very serious illness. That part of the work still fascinates and engages me now 33 years later, and is at the core of palliative care and hospice.

What does it mean to you to be named a “Visionary” in Hospice and Palliative Medicine?
Being named a “visionary” by my peers means a lot to me, especially since my “vision” has at times been controversial. I love the opportunity to partner with patients who are facing an uncertain medical future, and to commit to working with them no matter where that illness takes them. Most of the time with skillful application of palliative treatments, we can assist patients to find sufficient symptom relief and meaning throughout their illness through to their death. But there have always been a few patients whose suffering was much harder to relieve even with state-of-the-art palliative care. I have written about my struggles to address the needs of these patients, not to undermine the outstanding work that we do in hospice and palliative care, but to help us collectively figure out how to keep responding when our usual answers are insufficient. Although the commitment not to abandon such patients remains the core value, the particular answers I have come up with beyond that commitment to address these challenging situations are not elegant or ideal. Our patients and their families have no choice about going on this part of the journey if that is where their illness takes them; our challenge is to learn how to walk with them no matter where it goes. I am glad that our field continues to struggle with the edges of this vision, and I feel honored that the tent of the profession is broad enough to include me as one of its “visionaries”.

What is your vision for the future of hospice and Palliative Medicine?
Our program in Rochester like many others is growing like a “bad weed”. Perhaps we should have multidisciplinary palliative care co-manage every seriously ill patient throughout the country. But there are substantial problems with this vision. First, we do not have enough trained palliative care clinicians to do a fraction of this work. Second, even if we had enough clinicians, it is not a good idea to require an additional specialty team to provide all needed palliative treatments. Such an approach would not only be expensive, it would further fragment care and be non-sustainable. This has led to the proposal that “primary palliative care” skills be defined and taught to all clinicians who care for patients with serious illness, both primary care and non-palliative care subspecialists. Basic pain and symptom management and usual goals of care discussions would be carried out by those already providing the care (after a period of skill enhancement). “Specialty palliative care” would then be reserved for the more challenging cases (complex pain/symptom management, conflict over goals of treatment, major family distress) with the expectation that the patient whenever possible would be returned to the primary treating team for ongoing care and follow-up. As palliative care programs are starting up, trying to build and prove their worth, particularly in the current “fee for service” world, it may be difficult to make this broader vision a reality. But in a capitated world where real value counts, this integrated model of palliative care may well find a home.

More information on the Visionaries project, including the list of 30 Visionaries is on the Academy’s website www.aahpm.org.