Visionaries

Hospice and Palliative Medicine Visionary Eduardo Bruera Shares His Insights on the Field

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 Eduardo Bruera, MD FAAHPM, Professor of Medicine, The University of Texas MD Anderson Cancer Center in Houston, TX.

Who has most influenced your work and what impact has he or she had?
I was very fortunate to learn the principals and practices of whole person medicine from my father. He was a cardiologist who made home visits on a regular basis and I was able to learn a lot from his example. Dr. Neil McDonald mentored me during my early years as a fellow and junior faculty and taught me unforgettable lessons about medicine, academic and administrative issues, and demonstrated by his behavior and guidance how it is possible to be at same time an academic and administrative leader and to be a highly ethical person. Dr. Vittorio Ventafridda over the years taught me great lessons about what palliative care should be and he always insisted on the importance of taking our discipline to academic centers in the United States.

What does it mean to you to be named a “Visionary” in Hospice and Palliative Medicine?
There is no greater honor than being recognized by my peers. Over the years I have followed the teachings of our pioneers and tried to contribute to our field with research and education on how to assessment and manage common clinical problems in the delivery of palliative care. I have enormous respect for everyone working in this difficult field. In my view, palliative medicine specialists represent the essence of what medical care should be. This recognition is for me a challenge to do more and better work on their behalf.

What is your vision for the future of hospice and Palliative Medicine?
Every academic hospital and medical school will have a fully established palliative medicine department with full time palliative medicine specialists and an inpatient palliative care unit. Every hospice in the United States will have full time palliative medicine specialist medical directors and medical staff. Palliative medicine will be one of the main components of medical care, education, and research.

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

Hospice and Palliative Medicine Visionary Betty Ferrell Shares Her Insights on the Field

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 Betty Ferrell, PhD MA RN CHPN FAAN FPCN, Research Scientist, City of Hope National Medical Center in Duarte, CA.

Who has most influenced your work and what impact has he or she had?
My professional life has been rich with the influence of many colleagues across disciplines, some present in my daily work at City of Hope National Medical Center, and many across the globe who struggle to advance palliative care in circumstances far more challenging than my own. Over the past 14 years of our ELNEC project (End of Life Nursing Education Consortium), I have been strongly supported by many; chief among them are Rose Virani, Pam Malloy, Judy Paice, Patrick Coyne, and Kathy Foley.

My mentors have come from every discipline and I am humbled by my colleagues in medicine, nursing, chaplaincy and social work. I am confident that quality palliative care exists only when we all work together with a shared vision.

If I were to select one person who has most influenced my career it would be Nessa Coyle. I met Nessa about 25 years ago and we became cross-country colleagues and now close friends. Nessa is the embodiment of palliative care. She has the vast knowledge of pain and symptom management, the art of psychosocial support, a deep connection with both existential concerns and an intense passion and clear vision for what is right. From Nessa I have learned to remain focused on what matters, to be silent at times and to rage at others, and to remain in awe of humans facing the end of life.

What does it mean to you to be named a “Visionary” in Hospice and Palliative Medicine?
I began my career in 1977 when there were less than 10 hospices in the country, there were none in my state, the words “palliative care” didn’t exist in our vocabulary, and when Kübler-Ross work was only beginning to be known.

I count my life as one of enormous opportunity and blessing to have been a part of dedicated and passionate colleagues who have changed the culture of care and created hospice and palliative care as an essential component of health care and who have advocated for such care as a human right. I recall working closely with Diane Meier creating the National Consensus Project Guidelines, fully aware of what a tremendous gift it is to be able to do important work in the company of those you admire the most.

To be recognized as a “visionary” is a very special honor, especially having been nominated by colleagues in AAHPM. When I think “visionary” I think of those who were bold enough to see that there was a better way. I consider myself as one lone voice in a very large chorus. Advances in our field have only been possible through the generous spirit of many with a common vision that the end of life is not a medical failure, but a sacred time of life.

What is your vision for the future of hospice and Palliative Medicine?
My vision for the future is that all people facing serious illness and the end of life will have access to high quality palliative care. I hope that palliative care will be so well integrated that it would be shocking for a patient and family to not receive this care. I have heard many of my colleagues say that we who have been so privileged to be a part of this early history are building the care system we want for ourselves.

I envision a time when our society fully expects to receive “compassionate and competent palliative care” which are the words of Dame Cicely Saunders and that we have indeed built a system of care that responds to that expectation. I am confident that vision can be a reality.

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

Hospice and Palliative Medicine Visionary Patrick Coyne Shares His Insights on the Field

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 Patrick Coyne, MSN APRN ACHPN FAAN, Clinical Director, Thomas Palliative Care Service, Virginia Commonwealth University Medical Center in Richmond, VA.

Who has most influenced your work and what impact has he or she had?I have been blessed in my life and career. I had wonderful parents who instilled the ability to question everything and ask “why not?” My wife Ellie and daughter Erin have been constantly supporting my love for palliative care and keeping me grounded and energized. Judy Paice has been and remains my go-to person with challenges in pain management, symptom issues and other crises. Betty Ferrell clearly took a risk on me by giving me many unique opportunities which allowed me to grow professionally and encouraged me unconditionally. Tom Smith, really to be forever known as my partner in crime, was/is a constant supporter, advocate and friend. Tom was willing to take risks with me that I believe ultimately helped us make a positive impact on countless individuals’ lives and an entire healthcare system. I have been fortunate through the years to have been surrounded by countless exceptional nurses, physicians, administrators, social workers, volunteers, researchers as well as other disciplines. Some who deserve particular attention, Bart Bobb, Clareen Wiencek, Laurie Lyckholm, Dani Noreika, Connie Dahlin , Mary Ann Hager and Ken White. All their dedication made this work easier, constantly encouraged and challenged me, and thus supported my professional development. The entire palliative care team at Virginia Commonwealth University is without a doubt the greatest group I could ever have the opportunity to work with; in a word they are” unrelenting”. Finally, our patients and their families teach and tolerate me daily, always pushing me to improve and question the status quo.

What does it mean to you to be named a “Visionary” in Hospice and Palliative Medicine? I am overwhelmed, shocked and honored. Clearly there are individuals more deserving of this honor. I believe this is a validation of the work of the teams with whom I have served, specifically Virginia Commonwealth University/Massey Cancer Palliative Care Program, the ELNEC team and the APRN palliative externship program at Virginia Commonwealth University.

What is your vision for the future of hospice and Palliative Medicine?I believe palliative care will experience extremely rapid growth and eventually acceptance within our society. This growth will be challenging as our numbers are few and the need is great. I hope programs such as our pilot APRN palliative externship program at Virginia Commonwealth University will ease this problem and promote solutions.

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

Hospice and Palliative Medicine Visionary Atul Gawande Shares His Insights on the Field

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 Atul Gawande, MD, Associate Professor, Brigham and Women’s Hospital in Boston, MA.

Who has most influenced your work and what impact has he or she had?
As a writer, and someone who tries to think hard about how to practically improve our systems of care, it’s been the voices of my patients and many many leaders in hospice and palliative care who have shown what better really can look like.

What does it mean to you to be named a “Visionary” in Hospice and Palliative Medicine?
It’s a bit embarrassing, really, and an exaggeration, given that I am an outsider and nonexpert in palliative medicine. But it is gratifying. I always hope I can connect and offer credible ideas, and it means a lot to know I have.

What is your vision for the future of hospice and Palliative Medicine?
It is the one I learned from your own members: that being a good clinician for those with incurable disease is to understand that sacrificing time now for the sake of possible time later can be profoundly harmful. At that point, our most important work is helping people achieve the best possible day they can today, and everyday that they may have remaining.

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

Hospice and Palliative Medicine Visionary Sister Mary Giovanni Shares Her Insights on the Field

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 Sister Mary Giovanni, RN, founder, president and CEO, Angela Hospice in Livonia, MI.

Who has most influenced your work and what impact has he or she had?
I see my work as following along a path that God set for me. It is a series of experiences that has led me to where I am today, humbling accepting the title “Visionary.”

Initially it was my parents who influenced me and led me to a life of service. They each had the gift of giving to others. Even my mother, while raising all 12 of us children, found time to help others. Whenever neighbors were in need – whether it was mother cooking something for them, or my father building something for them – it was just something quietly done. I feel that was where I got my gift of service.

When I began my vocation as a Felician Sister, I was working in the infirmary where we cared for ill and elderly Sisters. I couldn’t help but notice the vast difference in the way we cared for dying Sisters in the infirmary, compared to the way dying patients were cared for in a hospital setting. In the hospital, dying patients were isolated at the end of the wing, where they were treated quietly until they died. I wished that all people could have the compassionate, holistic care that we provided for the Sisters.

When I saw Dame Cicely Saunders speak in 1974, I saw the answer of how to care for the dying. I knew we needed this beautiful care for lay people here in the United States. So Dr. Saunders also had a tremendous impact on me.

What does it mean to you to be named a “Visionary” in Hospice and Palliative Medicine?
It is an honor, and also very humbling to be named a Visionary. But I feel that I really must share this honor with all of the wonderful people who have worked alongside me over these 30 years. The caring and compassion I see in my staff and our volunteers continue to inspire me to this day. And I also must credit my fellow Felician Sisters who have believed in this mission and given me the resources and opportunities needed to carry out this work.

The success of Angela Hospice has certainly been a story of cooperation, and shared passion for helping others, and I know that none of this could have happened without the help of these dedicated colleagues and friends.

What is your vision for the future of hospice and Palliative Medicine?
I think that as more families experience the benefits of these compassionate programs, we will see a better understanding of the hospice concept as a whole out in the community. This is something I’ve already noticed with young people who have seen hospice help a grandparent or other family member. They have an appreciation for the compassion and caring of this work, which I believe begins to overcome the fear.

It is understandable that people don’t want to think about death or losing a loved one. But we know that it is important that people do know about what hospice has to offer, so that when we can be of help, they won’t hesitate to make that decision.

We hear from families time and time again saying they wish they had called us sooner. We can provide so much help, relief, and comfort to our patients and their families. The sooner they call us, the sooner we are able to provide that assistance, so the patient and their families can benefit more from these services. In this way, my vision for the future is greater comfort for more patients and the people that love them.

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

Hospice and Palliative Medicine Visionary Charles von Gunten Shares His Insights on the Field

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 Charles F. von Gunten, MD PhD FACP FAAHPM, Vice President, Medical Affairs, Hospice and Palliative Medicine, Kobacker House in Columbus, OH.

Who has most influenced your work and what impact has he or she had?
There were many, but those that come to mind immediately include:
• Ted Rematt, a friend and old Roman Catholic priest who served as a volunteer chapin at the Hospice of St. John — for first introducing me to hospice care.
• Hospice nurses and Jamie Von Roenn, hospice medical director, — for guiding me when I started my residency in internal medicine at Northwestern Memorial Hospital in Chicago.
• Kathy Foley, Russ Portenoy and Bill Breitbart at Memorial Sloan-Kettering, Declan Walsh at Cleveland Clinic, Nigel Sykes at St. Christopher’s Hospice in London, Geoffrey Hanks at St Thomas’ Hospital and Janet Hardy at Royal Marsden Hospital — for allowing me to observe your work while I was learning about palliative care:
• Martha Twaddle, Mike Preodor, Mike Marshke and Kathy Neely — for helping me staff the inpatient unit so I would not always be on service.

What does it mean to you to be named a “Visionary” in Hospice and Palliative Medicine?
I couldn’t be more pleased that my colleagues see me as a Visionary and leader in our new field of medicine. I have never thought of myself as a visionary—rather, I see myself as an engaged and empowered clinician working to make bad things better. That is part of our professional calling as physicians—to respond to the needs of our patients and leave the system better than the way we found it.

What is your vision for the future of hospice and Palliative Medicine?
We are a part of standard medical care. The scientific results are in; palliative medicine isn’t a choice any more than washing hands before performing a surgical operation is a choice. The challenge is to build the systems and overcome the barriers to ensuring that palliative care is available to those who need it.

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

Hospice and Palliative Medicine Visionary Warren Wheeler Shares His Insights on the Field

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 Warren Wheeler, MD, Senior Director of Palliative Medicine, Nathan Adelson Hospice in Las Vegas, NV.

Who has most influenced your work and what impact has he or she had?
As a medical oncologist in 1977, my patient Mrs. W. had gangrene of her lower extremities, a complication from metastatic breast cancer. She had horrific and uncontrolled malignant pain. I had been trained in medical school, internship, residency, and fellowship to treat the disease, not the person with the disease. As I and my house staff entered her room she was delirious and screaming from pain. Her two daughters stood at the foot of the bed and asked, “How can you let our mother suffer like this?” I was belittled in the presence of house staff, felt vulnerable, and inadequate as a physician. I owe it to this patient for changing my direction for caring of patients.

The first article I read on management of pain and symptoms in terminal illness was by Dr. Balfour Mount in his address to the Royal College of Surgeons of Canada. This opened my mind to a whole new area of learning. My next encounter was with Dr. William Lamers, Jr., medical director of Hospice of Marin. I completed his training seminar on ‘Developing a Hospice Care Team’.

Many pioneers of hospice have had a professional influence on my philosophy and knowledge on how to care for the chronically and terminally ill patients. Those physicians with major impact have been Drs. Eric Cassell (personhood), Ronald Fisher (day-care hospice of the NHS), Kathleen Foley (“The dose that works is the dose that works”), Cicely Saunders (principles of hospice philosophy), and Robert Twycross (whole person care).

What does it mean to you to be named a “Visionary” in Hospice and Palliative Medicine?
To paraphrase poet Robert Frost, this is a lifetime affirmation that the hospice and palliative care road I chose has made all the difference in me as a person and in the care I give to patients. I have often thought how privileged it would be to have met Sir William Osler or Florence Nightingale. Well, I have the honor of living at the same time as their hospice counterparts, knowing and learning from them. This is truly an experience of a lifetime.

What is your vision for the future of hospice and Palliative Medicine?
My vision is that hospice philosophy and the principles of palliative care will be mandatory curriculum in all the professional schools of pharmacy, nursing, and medicine. The hope is that this will have a major influence on the minds of Americans who presently feel that they never die, but just underachieve!

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

Hospice and Palliative Medicine Visionary Timothy Quill Shares His Insights on the Field

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.

Hospice and Palliative Medicine Visionaries: How They Inspire Others

Submitted by Steve Smith, MS CAE, AAHPM CEO/Executive Director

Physicians, nurses, researchers, advocates and even a past president of the United States were voted the top 30 Visionaries in Hospice and Palliative Medicine, as the American Academy of Hospice and Palliative Medicine (AAHPM) celebrates 25 years of serving the profession.

In commemorating its founding, the Academy asked members to nominate individuals they considered to be the most influential leaders in hospice and palliative medicine, and then select their top 10 among the 111 nominated by the field. In the end, more than 6,500 votes were cast.

Several common themes emerged in praise of the nominees, such as – mentor, leader, big thinker. Some were cited for furthering research, communication or education; others for their expressions of kindness and compassion. Many have helped increase access to care within a region or community, while others shaped policy and practice on a national or international level. Among the 30 are early pioneers, some now gone, who inspired today’s leaders. Others represent the new generation of Visionaries taking the profession into the future.

So, here, in alphabetical order, are 30 hospice and palliative medicine Visionaries. In most other places, this list only includes names. I thought it would be interesting to share in this Blog post, some of the comments that were submitted anonymously in support of each Visionary.

Amy P. Abernethy, MD PhD FACP FAAHPM, Director, Duke University Medical Center, Durham, NC
“Amy has contributed invaluably to building the evidence base that informs our practice in palliative medicine by conducting rigorous clinical trials in a way that was previously not done in our field. She has also co-founded the first U.S. cooperative group in palliative care, and secured millions of dollars in funding for this from the National Institutes of Health (NIH).”

Robert M. Arnold, MD FAAHPM, Professor of Medicine, University of Pittsburgh, Pittsburg, PA
“There is not a part of the field that Bob has not touched. He should be considered a visionary because he has helped transform how we teach communications skills to practitioners both inside and outside of Palliative Medicine.”

Susan Block, MD FAAHPM, Chair, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA
“Susan is committed to improving communications about end-of-life care, enhancing advance care planning and focusing on goal-consistent care, through research and professional and public education.”

Eduardo Bruera, MD FAAHPM, Professor and Chair, Department of Palliative Care, MD Anderson Cancer Center, Houston, TX
“Eduardo is dedicated not only to excellence through knowledge, but compassion in the use of that knowledge. He has contributed vastly to the advancement of quality palliative care internationally, in particular developing countries in Latin America through his work with the World Health Organization (WHO) Collaborating Center for Cancer Education, Training and Research.”

Janet Bull, MD FAAHPM, Medical Director, Four Seasons Hospice, Flat Rock, NC
“Janet was instrumental in starting the Palliative Care Program and founded the Clinical Research Department at Four Seasons. Trained in obstetrics and gynecology, she has witnessed as many births as deaths, and states, ‘A good birth and a good death are filled with the same ingredients – laughter, tears, peacefulness, joy, love, and an incredible sense of awe.’”

Ira Byock, MD FAAHPM, Professor of Medicine, Geisel School of Medicine at Dartmouth, Lebanon, NH
“Ira is the voice and conscience of hospice and palliative care for our generation. He is a ‘big thinker’ offering a vision of how to move from hospice-focus to palliative care and maintains a laser focus on patient and family well-being and meaning.”

Gail Austin Cooney, MD FAAHPM, Vice President of Access, Hospice of Palm Beach County, Palm Beach, FL
“Gail is a tireless advocate and hospice and palliative medicine champion. Under her watch we developed an open access policy that allowed terminally ill patients who were still ‘fighting’ to continue to receive complex therapies. She saw the value of teaching and encouraged relationships with the different training programs in our community to conduct lectures on end-of-life care issues.”

Nessa Coyle, NP PhD, Memorial Sloan-Kettering Cancer Center, New York, NY
“Nessa is responsible for the one-year nurse practitioner fellowship program in pain and palliative care and is co-editor of The Oxford Textbook of Palliative Care Nursing and The Nature of Suffering and the Goals of Nursing.”

Patrick Coyne, MSN APRN ACHPN FAAN, Clinical Director, Thomas Palliative Care Service, Virginia Commonwealth University Medical Center, Richmond, VA
“Throughout his stellar career in hospice and palliative medicine, Patrick has established a phenomenal track record as a clinician, researcher, author, teacher, activist, trailblazer, and human being. His tireless work at VCU led to the establishment of a palliative care consult service followed by one of the first inpatient palliative care units in the U.S.”

Betty Ferrell, PhD MA RN CHPN FAAN FPCN, Research Scientist, City of Hope National Medical Center, Duarte, CA
“Betty has tirelessly championed holistic quality interdisciplinary palliative care and mentored a generation of clinicians, educators, and researchers. She has been in oncology nursing for 35 years and has focused her clinical expertise and research in pain management, quality of life, and palliative care.”

Kathleen Foley, MD, Chair, the Society of Memorial Sloan-Kettering Cancer Center, New York, NY
“Kathy helped establish Memorial Sloan-Kettering’s Pain and Palliative Care Service in the early 1980s and served as its chief. Her research in the assessment and treatment of pain in cancer patients led to the development of standards of care for pain and palliative care worldwide that are still used today. ”

Atul Gawande, MD, Associate Professor, Brigham and Women’s Hospital, Boston, MA
“A surgeon, writer and public health researcher, Atul is well-known for his writings in the New Yorker, including the article “Letting Go – What Should Medicine Do When It Can’t Save Your Life” and was named one of the world’s hundred most influential thinkers by TIME magazine. His writings have generated significant interest in palliative medicine in recent years.”

Sister Mary Giovanni, RN, Founder and President/CEO, Angela Hospice, Livonia, MI
“A registered nurse, Sr. Giovanni attended a seminar by Dame Cicely Saunders and spent the next decade researching pain control, alternative comfort measures and the daily needs of dying patients. She opened Angela Hospice in 1985 and today the hospice has more than 200 employees and 400 volunteers serving 1,700 adults and children a year.”

Nancy Hinds, RN, Founder, Hines Hospice, Fresno, CA
“With a deep personal faith and conviction, Nancy founded her hospice within her own home while she was a new widow with three babies. Since then, her spirit of selflessness has stretched around the world through her conferences for international organizations. Her spiritual and physical holistic care has brought peace to many.”

Elisabeth Kübler-Ross, MD, author of the ground-breaking book, On Death and Dying (deceased)
“With the 1969 publication of On Death and Dying, Elisabeth started the national discussion about death and dying, and the care and treatment of terminally ill patients. Her teachings transformed education and understanding of the Five Stages of Grief. She taught death and dying courses in colleges, seminaries, medical schools, hospitals and social-work institutions, where she impacted more than 125,000 students.”

David McGrew, MD FAAHPM, Chief of Medical Services, Hernando Pasco Hospice, Hudson, FL
“A founding member of AAHPM, Dave served as an Advisory Board member to the Florida Legislature’s Panel for the Study of End of Life Care, helping change laws regarding advance directives, DNRs and professional education.”

Diane E. Meier, MD FACP FAAHPM, Professor, Mount Sinai School of Medicine, New York, NY
“Diane leads the development of hospital-based palliative care in the U.S. and mentors a generation of clinicians, researchers, educators and leaders. She is the most visible central figure in the national palliative care movement over the last 10 years.”

R. Sean Morrison, MD FAAHPM, Professor, Mount Sinai School of Medicine, New York, NY
“Sean leads the drive for research in hospice and palliative care, mentors dozens of researchers, and works tirelessly to develop infrastructure to support research in hospice and palliative care.”

Balfour Mount, MD, Emeritus Professor, McGill University, Montreal, QC, Canada
“Balfour is the father of palliative care in North America and coined the term ‘palliative care’.”

Russell K. Portenoy, MD, Chairman and Friedman Chair in Pain Medicine and Palliative Care, Beth Israel Medical Center, New York, NY
“Russ is committed to improving patients’ quality of life through research in assessment and management of pain and other symptoms. He is editor in chief of Journal of Pain and Symptom Management and has written, co-authored, or edited more than 20 books and 450 papers and book chapters on topics in pain and symptom management, opioid pharmacotherapy, and symptom assessment.”

Timothy E. Quill, MD FACP FAAHPM, Professor, University of Rochester Center for Experiential Learning, Rochester, NY
“An early and continuing strong advocate for compassionate care of the dying, Tim was the lead physician plaintiff in a case that eventually reached the U.S. Supreme Court. He has lectured widely about various aspects of the doctor-patient relationship, with special focus on end-of-life decision making and has authored numerous books and articles that have appeared in major medical journals, including the New England Journal of Medicine.”

Ronald Reagan, 40th President of the United States (deceased)
“President Reagan signed legislation in 1982 adding hospice care to the Medicare benefit. The number of hospice programs and patients served continues to grow, with more than 1.5 million patients receiving services from hospice annually.”

Cicely Saunders, OM DBE FRCS FRCP FRCN, Founder, St. Christopher’s Hospice, South London, England, (deceased)
“Dame Cicely was a physician, nurse and social worker who lectured widely on caring for patients with terminal illness, wrote many articles and contributed to numerous books. She is credited with founding the modern hospice movement and was an inspiration to countless others, including many of her fellow Visionaries.”

Rae Seitz, MD, Medical Director, Hawaii Medical Service Association, Honolulu, Hawaii
“Rae has helped improve quality of life for thousands of Hawaiians by extending hospice services through the creation of a supportive care model allowing patients to receive disease- directed therapy along with support from Medicare-certified hospice agencies.”

C. Porter Storey, Jr., MD FACP FAAHPM, Executive Vice President, American Academy of Hospice and Palliative Medicine, Boulder, CO
“As the Academy’s first and only executive vice-president, Porter continues to be a vocal advocate for seriously ill patients and their families as he represents AAHPM on Capitol Hill and to the media. His extensive list of publications includes the popular UNIPAC books – the resource for hospice and palliative care professionals.”

Martha L. Twaddle, MD FACP FAAHPM, Chief Medical Officer, Midwest Palliative and Hospice Care Center, Glenview, IL
“Few people have contributed to the hospice and palliative care movement on so any levels as Martha – from collaborating with other pioneers to make palliative care a medical subspecialty, to improving patient care and setting quality standards, to increasing industry awareness and shaping national public policy, and to ongoing education and mentoring.”

Charles F. von Gunten, MD PhD FACP FAAHPM, Vice President, Medical Affairs, Hospice and Palliative Medicine, Kobacker House, Columbus, OH
“Charles developed a model for palliative care that is the basis for most of the nation’s hospital-based programs and played a leading role in gaining formal recognition of palliative medicine as a medical sub-specialty. He serves as editor-in-chief of the Journal of Palliative Medicine.”

Declan Walsh, MD MSC, Professor and Director, The Harry R. Horvitz Center for Palliative Medicine, Cleveland Clinic, Cleveland, Ohio
“Declan became the first director of the Palliative Care Program created at the Cleveland Clinic, which was designated a national and international demonstration project by the World Health Organization. A frequent invited speaker at international meetings on palliative medicine, he has published more than 250 articles, 26 chapters and four books, including Palliative Medicine.”

David E. Weissman, MD FAAHPM, Director, Medical College of Wisconsin Palliative Care Center, Milwaukee, WI
“David’s passion for teaching and mentoring has left a remarkable legacy across the country – for example, his leadership in stimulating end-of-life care curricula for all residency training programs and partnering in the development of the Center to Advance Palliative Care (CAPC). Practically any topic within palliative medicine that you research will lead you to an article with his name on it.”

Warren Wheeler, MD, Senior Director of Palliative Medicine, Nathan Adelson Hospice, Las Vegas, NV
“Warren is a visionary who has dedicated his entire professional career to people who need care when they are the most vulnerable. He founded two hospice programs in Columbus, Ohio, volunteering his time and raising private donations; founded a palliative care program for patients suffering acute pain but not ready for hospice; and helped secure passage of two laws making it easier for physicians to relieve suffering and treat intractable pain.”

On behalf of the AAHPM staff, we extend our congratulations to all of the nominees and thank them for their continued commitment to improving the care of seriously ill patients and their families.