Founders Story

The first face-to-face meeting of the National POLST Paradigm Task Force in New Orleans in 2007 (not pictured are Sally Denton and Marlene Davis).

Founding POLST Leaders

Judith (Judy) Black, MD, MHA and Marian Kemp, RN

In Pennsylvania, two POLST proponents, Judy Black, former Medical Director for Senior Markets for Highmark, Inc., the Blue Cross Blue Shield plan based in Pittsburgh, and Marian Kemp, a project manager also at Highmark at the time, played essential leadership roles in the rollout. Black discovered the POLST concept in 2000 through Jack Wennberg, father of the Dartmouth Atlas of Health.

“My reaction was that the concept was wonderful. We finally had a tool. But some folks thought you could just take this form and hand it to the nursing home and it would just happen,” Black says. “Only when I started working with colleagues at the University of Pittsburgh, Highmark and the UPMC Health Plan did it become clear how much work was required. You couldn’t do it in isolation.”

In Pennsylvania, which has a high rate of nursing home beds per 1000 residents, it was natural to focus on the long term care setting and quality initiatives to improve conversations with residents and make sure that their wishes would be honored. “One thing that moved our initiative along was that Judy had so many contacts in long term care,” Kemp says. “Many professionals began to hear about POLST. Patrick Dunn and Woody Moss spent a lot of time in consulting in this state, and then Susan Tolle came to speak with key community leadership and gave a public talk. Our Patients Life-Sustaining Committee worked closely with them.”

I’d say the development of the National Task Force and the regular meetings among its leaders was a big assist to every state. A lot of issues were discussed. It was a good way to share information. The willingness of the states ahead of us to share information, even on POLST training—there was a real openness to share. We felt we were helping to shape an important national concept. -Marian Kemp

Patricia (Pat) Bomba, MD

Pat Bomba, Vice President and Medical Director for Geriatrics at Excellus Blue Cross Blue Shield in Rochester, NY, says New York’s involvement in POLST grew out of a 1998 talk about the 1997 Institute of Medicine Report Approaching Death: Improving Care at the End of Life given by Don Berwick, then head of the Institute for Healthcare Improvement. Berwick challenged his listeners to engage with advance care planning issues. “I was serving as the chair of the board of directors of of BlueCross Blue Shield of the Rochester Area (BCBSRA). That evening a group of us, including the medical directors of BDBSRA and our IPA, got together to talk about the issues Don had raised. We formed an end-of-life professional advisory group with hospice, medical and nursing representatives. Our first task was a community survey on advance care planning, hospice care, and pain management,” she recalls.

When the community survey revealed the need for improvement, Bomba formed the Community-wide End-of-Life/Palliative Care Initiative, with broad community representation, including consumers. Four workgroups focused on concrete projects, two on advance care planning, one on pain management and one on community education/professional training. After completing evidence-based research, the first workgroup focused on creating a new program, Community Conversations on Compassionate Care, that would encourage all individuals 18 years of age and older to have early advance care planning discussions and complete a health care proxy.

Bomba came across early research about the POLST concept in Oregon, which inspired the creation of New York’s Medical Orders for Life-Sustaining Treatment (MOLST), launched in 2004, starting in Rochester. “Our second workgroup’s goal was to ensure that people with advanced illness would have their treatment preferences honored. Both advance care planning programs were seen as complementary as New York did not have surrogacy laws at that time. We found it was critically important to achieve consensus among multiple stakeholders including, but not limited to the medical, legal, aging, pediatric, disability, religious and diverse community leaders. We’ve come a long way in New York as MOLST is now a New York State Department of Health form and we are working statewide on digital transformation to eMOLST.”

As part of due diligence, I reached out to Pat Dunn in 2001 and said: We want to model our program on what you’re doing in Oregon—but within the context of our laws in New York. Pat didn’t want us to use the name POLST, because Oregon’s POLST form was different than our MOLST form as well as the legal requirements for making DNR decisions and the need for periodic review and renewal of medical orders. We needed to use a different form, but the process was the same. There was concern from those involved in the POLST research that because New York’s form was not the same as Oregon’s, it might undermine their research.

Margaret (Margie) Carley, RN, JD

As a representative of the Oregon Health Care Association, one of the nursing home and community based care associations, Margie Carley saw early on how POLST could complement other efforts being pursued at the state and national levels to improve care for people coming in and out of nursing homes and community based care facilities. She became involved with initial POLST development, and as an Oregon Task Force member, conducted a lot of training sessions about how to use POLST in long-term care. Margie later became the chair of the Oregon POLST Task Force and then served as the first executive director of the National POLST Paradigm Task Force in 2012.

Where to draw the line received a lot of attention at the Task Force – with discussions about POLST model, what it is, and what it is not, she says. “I don’t think that stricter control over the POLST concept was in the cards. Because of our emphasis on voluntariness, it had to have enough flexibility so that people could adapt it.” Carley says she wishes there had been more funding earlier in its development to give more help to other states. “But I am thankful for the time and energy that was donated to the cause by the individuals who were involved in POLST development.”

Pat Dunn gave each of us on the Oregon Task Force a state to mentor, based on our expertise or personal connections. That served us well. I was in charge of answering Patricia Bomba’s questions from New York. These assignments gave us the bandwidth for addressing the issues with other states. We had a bench and could bring in the right people to help, and start forming the organization that could grow into the voice of POLST.

Patrick (Pat) Dunn, MD

Pat Dunn, former Associate Chief of Medicine at Legacy Health System in Portland, was a leader from the beginning of the Oregon coalition that grew into the first Oregon POLST Task Force and then the National Task Force. He is praised by his colleagues for his commitment to the hard work of collaboration. “POLST emerged in Oregon from the local medical ethics community’s attempt to respond to a common frustration,” Dunn says. “Patient preferences for treatment were not being consistently respected. Even though we had advance directive tools to honor a patient’s wishes for treatment, they weren’t always working.”

Starting around 1990, the Health Ethics Network of Northern Oregon began working on this problem, eventually linking with other groups in the state to form a statewide task force and coalition of interested parties. Dunn took the lead as chair. Their work on the initial version of a document called the Medical Treatment Coversheet culminated in release of the POLST form in Oregon in 1995.

Dunn says the POLST movement was an idea whose time had come. “We just wanted to help people. We knew it was important. We built the program on trusted relationships, openness, transparency, inclusiveness, and making made by consensus.”

“The National Task Force talked a lot about the process—including how to balance central control versus individual freedom to innovate,” Dunn says. “The idea was borne out of our experience in Oregon—but we did not want to be presumptuous about the cultures of other states. Our goal was not to overlay a prescriptive model or name on others but instead to provide a central concept for honoring patient preferences.”

When the opportunity arose to help honor a person’s values for care during their final months, a group of committed, caring health professionals devoted time and experience to the cause. This cause became recognized by others who saw the need for improvement in this essential part of end-of-life care. The cause became a movement. For those critical of the paradigm, we recognize we have the same goal and welcome constructive engagement. It is this spirit on which the movement is founded.

Bernard (Bud) Hammes, PhD

Starting in 1991 in La Crosse, WI, Bud Hammes, a clinical ethicist at Gunderson Medical Foundation and Lutheran Medical Center, helped to organize a community advance care planning project that involved collaboration between the city’s two major health systems to encourage more advance care planning by patients. That work eventually evolved into the ‘Respecting Choices’ project, which led to very high rates of advance directive completion and availability in La Crosse and subsequently was adopted in communities around the world. “But the advance directive documents, typically powers of attorney for health care, were not specific enough for people who resided in long-term care or were admitted to home hospice. An additional form was needed to communicate specific decisions for this population so that plans would work in emergency situations and a cross settings of care,” says Hammes, who eventually became Chair of the National Task Force.
“Common problems brought us together. Sharing solutions kept us together. As we started demonstrating the effectiveness of POLST and as the solution spread, each of us was getting a lot of calls from other people. We realized that it was becoming unmanageable, and we wouldn’t be able to respond effectively if we each just continued to do our own thing in our own place,” he says.

“But there was a lot of anxiety, at least on my part. We talked a lot about larger principles and philosophy, but a more basic question arose: as we more formally developed standards and started calling ourselves the national paradigm, who were we to make the standards? We had appointed ourselves. Did we really have the authority? So there was some soul searching. While I felt a little uneasy about it, I knew and could see that no one else would be in a position to do what we were doing. That gave us some comfort about ‘who we were’.”

Some of us were seeking and testing solutions. We attended the same professional meetings, which offered opportunities to hear about what others were doing. We were networking, during the sessions, on breaks, in the hallways. In 1995 at one of those meetings, I ran into Susan Tolle from the OHSU Center for Ethics in Health Care. We took a long walk together and talked about our respective work and our projects focused on honoring patient wishes for treatment at the end of life. She talked about POLST and the Oregon Task Force that developed it and the value of having a standardized medical order sheet. It turned out that the POLST approach fit perfectly into what we were trying to accomplish in La Crosse. Later I wrote to Oregon asking for permission to copy their POLST form.

Susan Hickman, PhD

Susan Hickman, a geropsychologist and Professor in the School of Nursing at Indiana University School of Nursing, has been involved in POLST development in two states as well as the National Task Force. Hickman first heard about the POLST concept from a presentation at the Oregon Geriatrics Association in 1997 when she was a postdoctoral fellow. She was intrigued with the notion of a systems-level approach to improve care of older adults with a tool that is valid throughout the health care system. After being hired by the OHSU School of Nursing, Hickman identified opportunities for research to better describe and evaluate the POLST model. She joined the Oregon POLST Task Force as a consultant in 2000.

Eventually she was awarded funding to study POLST utilization in Oregon nursing facilities and EMS, research that led to a multi-state study of POLST funded by the National Institutes of Health. “The role of research has been very important to the development of the POLST model. And there has been research on POLST almost from the very beginning,” she notes.

Hickman moved to Indiana in 2009, where she gave an ethics lecture series talk on her multi-state POLST research to the university community. That helped to spark the formation of the Indiana Patient Preferences Coalition to champion legislation that was eventually signed into law in 2013. “In Indiana we were starting in a different place. My background enabled us to begin further down the road, which was helpful because Indiana is measured in its response to change. We were able to lay out what to do to move forward for a group of people who were already interested in this, but weren’t sure how to direct their interest.”

What I remember about task force meetings is this: people were excited about the opportunity to share information. That spirit of sharing and openness, which is reflective of an academic setting, remains as an underlying principle for the POLST paradigm. It was an opportunity to collaborate in a way that would allow us to be more impactful. It’s been such a labor of love and people have invested so much in it.

Alvin “Woody” H. Moss, MD, FACP, FAAHPM

Woody Moss, Professor of Medicine and Director of the Center for Health Ethics & Law at West Virginia University, was one of the key early leaders from outside of Oregon in the national organization’s development. He founded and directed a well-established statewide network of medical ethics committees in West Virginia, the West Virginia Network of Ethics Committees (WVNEC). It was already well advanced in developing a similar system for the state. It became one of the first states to get a POLST-like system called Physician Orders for Scope of Treatment (POST) codified in legislation. “We could take a new program and build it upon our WVNEC infrastructure.”

Moss’s group recommended that the West Virginia’s Community-State Partnerships in End-of-Life Care project, funded by the Robert Wood Johnson Foundation, incorporate POLST into legislation and to require that a signature by the patient or legal agent be mandatory. A 2002 amendment to the West Virginia Health Care Decisions Act included POST, and pilot studies of outcomes helped to further advance the concept.

Susan Tolle and I were friends from our days at the University of Chicago’s medical ethics training program. She said to me: We have this novel idea. I quickly realized we needed PowerPoint slides so that I could start telling folks in West Virginia about POLST. So I called Terri Schmidt, who was very willing to visit us, present the POLST program to us, and share her slides…. The members of the National Task Force were prescient, we were forward-thinking. And our vision for POLST was validated by the Institute of Medicine’s 2014 report, “Dying in America: Improving Quality and Honoring Individual Preferences near the End of Life.”

Charlie Sabatino, JD

Charlie Sabatino had been involved in promoting advance care planning, the use of advance directives and out-of-hospital DNR laws for years as Director of the American Bar Association’s Commission on Law and Aging. He was well aware of the gaps with advance directives. He met Susan Tolle at a conference and learned about the POLST concept, which seemed like a good idea.
“I saw that it filled a piece of the puzzle that was missing. Advance directives are great for the individual to put their wishes forth, but they don’t speak the language of health care,” Sabatino explains. “I fell in with the crowd, and because I focus on legal and legislative issues in end-of-life care, I became the legal overview person in the group. So voila! They created title of legal advisor,” he explains.

It’s a great grassroots initiative. What’s remarkable about the National POLST Paradigm Task Force is that when it started in 2004, there were only six states in a position to help other states wanting to understand and adopt the POLST Paradigm and to do it well. There was no deep-pockets funding. There were many ways to screw up POLST, with no regulatory oversight. If other states bastardized the concept, the backlash could affect everybody. So in order to make sure it didn’t go that way, and to help other states get off the ground, our work on setting standards followed soon thereafter.

Terri Schmidt, MD, MS

At the same time that Dr. Dunn’s group was hearing about families who were unhappy when they called 911 and patient’s received unwanted treatments, Clackamas County EMS Medical Director and Professor of Emergency Medicine at OHSU, Dr. Terri Schmidt was member of the EMS protocol development committee for the Portland metro area when theystarted hearing similar concerns from paramedics and families. The two groups started working together on the Medical Treatment Coversheet that was the first iteration of the POLST form. Her focus was on making sure the POLST concept could be adopted by emergency physicians and EMS. “The first version expressed patient wishes very well, but was not interpretable by EMS.” After multiple revisions, the first form was created.

The POLST movement, Schmidt says, is a testament to meeting a local need. “When we started in Oregon, it was to address a specific problem—patients and their families saying, for example, I don’t want to be resuscitated or I don’t want a breating tube. What we learned in Oregon was that in order for EMS and emergency departments to honor patient treatment preferences they needed to be translated into medical orders and that they needed to go beyond simply whether or not to start resuscitation if the person is in cardiopulmonary arrest.” In addition she notes,“I wish, in retrospect, there could be been just one national name. For me, 25 years later, I’d choose MOLST—Medical Orders for Life-Sustaining Treatment because it is inclusive of physician assistants and nurse practitioners but in Oregon we can’t go back. POLST is part of our language and we have an identity now.”

The most amazing thing to me is that, despite its imperfections, it has spread as far as it has. I was shocked to see my efforts to address this local problem turned into a national movement. I was struck recently when I took my emergency medicine recertification exame that there was a question about POLST it.

James (Jim) Shaw, MD

Oregon’s neighbor to the north, Washington, signed on early to the POLST movement, after initial research from Oregon started getting published, says Jim Shaw, a member of a regional ethics group in Eastern Washington. In 2000 the state’s health department ruled that nursing home patients who lacked capacity and had not obtained a DNR order before losing capacity could not have one—which catalyzed a response from the ethics community.

One of the things about the task force was that the people involved had a lot of integrity around process and motivation. It was a trustworthy group. I enjoyed working with them. Without the National Task Force, we wouldn’t have so many states today. It was a remarkable thing. It was a good team effort. We provided a lot of support for each other.

Susan Tolle, MD

Susan Tolle is a trained medical ethicist and primary care physician at Oregon Health & Science University and Director of its Center for Ethics in Health Care who has been a recognized national voice for Oregon’s leadership in medical ethics and end-of-life care. She has been the public face for the POLST movement in Oregon and nationally because of her leadership and extensive published articles. She believes she has received a disproportionate amount of the recognition, saying such a view shortchanges the key roles played by a handful of other Oregon POLST leaders.

“Although Oregon was first out of the gate with a functional POLST program,” Tolle says, “we were was always willing to learn from other states. We’d find blind alleys that didn’t work for us, and if we could help someone else avoid doing that, we would. We learned from others, for example, when Kansas figured out how to put a bold statement about patient goals on their form.”

We always had a sense that we would give it away—we’d freely help people in other states develop their own POLST programs. The movement nationally and in a number of others states has become strong with the consultations that Oregon provided. I helped mentor many people. But there was a real sense of collegiality, drawing upon Pat Dunn’s philosophy of inclusion and synergy. Our focus was on sharing with the next group to come along. Then we got some grant funding and we were able to support a lot more mentoring.