Leadership in Palliative Care: Eyes on the Prize

A few years ago, I was trying to do and be everything at once. I was a clinician with a primary care geriatrics practice; an in-patient palliative care consultation attending physician; a researcher on the impact of hospital palliative care; the leader of an academic medical school-based palliative care program; a teacher of fellows, residents and medical students; and Director of the Center to Advance Palliative Care. Just typing all this makes me feel tired. In 2009, the strains and impossibilities of doing all these things led me to take my first sabbatical. I went to Washington, DC, to spend a year as a Health and Aging Policy Fellow, working both on the Senate’s HELP Committee and at the Department of Health and Human Services (HHS).

In addition to appreciation for the deep commitment, expertise and sheer intellect of our so-called “government bureaucrats,” the biggest benefit I got from taking this year away from my job was time to reflect. Time to think about what gave me the greatest sense of accomplishment and joy in my work. Time to realize that trying to do everything was a sure recipe for doing nothing well. Time to realize that what brought me the most satisfaction was trying to solve the puzzle of making the health care system work for my patients, and to realize that—if I disciplined myself to focus on it—I could make a contribution. In other words, time to figure out, among the many things I could be doing with my one life, what is my highest and best use. The result was my decision to work full-time at the Center to Advance Palliative Care and give up all of my other roles and responsibilities.  It took me a long time to listen to my inner voice and do what mattered most to me instead of what other people expected me to do—something that I have heard many of my patients say they wished they had done earlier in their lives.

Fascinated by the levers of social transformation and intensely curious about how to influence the incredible complexity and perversity of our health care system, I studied other effective social change efforts. The Campaign for Tobacco Free Kids and ACT UP—two prominent social movements that created a new equilibrium in the U.S.—particularly caught my eye. The former moved us from “there’s nothing we can do about cigarette smoking” to a country with among the lowest smoking rates in the developed world. And ACT UP moved the country from hopelessness and helplessness in the face of an AIDS epidemic killing tens of thousands of people annually to what is now a manageable chronic illness.  Each of these initiatives required sustained and multi-sector changes, and each had to overcome powerful and well-resourced political opposition.

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How did these profound changes take place? The relatively new field of social entrepreneurship has produced what I have found to be the most informative literature about the how of effective social change. Social entrepreneurs straddle the space between government policy and direct service to solve a problem.

Consider advance care planning as an example—in the past, patients had little to no input over their medical care during serious illness—and where things need to be—routinely asking patients what is most important to them and recommending treatments aligned with their priorities. In 2016, Medicare began reimbursement for advance care planning, in which providers initiate, document and bill for advance care planning conversations. How did this happen? The work required to routinize advance care planning required both social advocacy (such as lobbying Congress and CMS by a number of organizations) and social entrepreneurship (development, testing and refining a solution that can change the status quo and create a new equilibrium). I recommend a recent (short!) book on this framework, titled Getting Beyond Better: How Social Entrepreneurship Works.

The central characteristics of this process include:

  1. Naming of a stable but inherently unjust equilibrium that causes (in our example of advance care planning) suffering of seriously ill people who lack the means or influence to effect change;
  2. Development, testing, refining, and scaling of a solution that shifts away from the old equilibrium (doctor knows best) to a new steady state (patients have a right to determine what is done with their own bodies) that fundamentally challenges the old status quo;
  3. Stabilizing and building a supportive ecosystem (training, law, regulation, payment) around the new equilibrium to sustain and extend its benefit across society

Successful political advocacy in support of advance care planning required evidence of its impact, scalability and acceptability to the public. A series of social entrepreneurs worked for decades to produce that evidence and build the supportive national ecosystem that, finally, enabled the new legislation. These included exemplars like Susan Tolle—who led the development and scaling of POLST—and Bud Hammes—who led the development and scaling of Respecting Choices.

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The core principles of social entrepreneurship is a framework involving 4 stages, as graphically depicted above:

  1. Understand the current equilibrium and what keeps it that way—a process of appreciative inquiry, and listening to key stakeholders, both those invested in the way things have always been done, as well as those who want change;
  2. Envision what success would look like, in order to strategize backwards from that goal;
  3. Build, test and modify a model or prototype until it demonstrates the impact sought (“success”) in a measurable, quantifiable and systemic manner; and
  4. Scaleability of the solution, or the ability to widely replicate it at the lowest possible opportunity cost.

If you read about the history of POLST and Respecting Choices, you will see each of these stages articulated. Application of this framework to scaling advance care planning required:

  1. Understanding why things are so broken (e.g., lack of training, perverse financial incentives);
  2. A vision for a new equilibrium (medical care begins with, and is always in orbit around, the priorities and concerns of the patient and the family);
  3. Building a prototype model, and testing and modifying it (advance care planning via POLST first in Oregon, now across states and care settings, and via Respecting Choices initially in LaCrosse, WI, now with international uptake) along with investment in research, education and training; and
  4. Scalability via technical assistance, on-line and in-person training, train-the-trainer approaches, coaching, regulatory and accreditation requirements, and changes in payment policy.

On a future post, I will examine the social entrepreneurship framework for the field of palliative care and getting to the prize: palliative care everywhere. Leadership is required from all of us in the field, each of us focused on our own highest and best use—towards the goal of co-creation with patients, families and clinicians to achieve the goal of the right care for the right person at the right time and in the right place, every time.

Post written by Diane E. Meier, MD, Director of the Center to Advance Palliative Care

Comments

  1. Barb Grimes, RN,BSN,CHPN says:

    First let me say thank you, Diane, for recognizing what was most important for you to accomplish in your life. Your choices have led many of us to continue to be the soldiers of change, marching through hospitals and communities with our flags of freedom. The freedom we bring with us is granted through education and acceptance. It allows our patients and their advocates to make informed choices, to make decisions based on the uniqueness of their lives. It also gives permission to healthcare providers to stretch past their once solid boundaries, and give the patient their right of choice.

  2. KDM PhD says:

    My experience with getting advance care planning integrated in health care is the refusal of physicians to participate. I fear this reflects their reluctance to stop income flow whether it be to private practice or nursing homes. Until we can overcome this obstacle which I believe is mountainous I feel as though one step forward invariably leads to two back. Too many individual options that influence the process and the patient.

  3. This is such important information presented concisely.
    This is will be very helpful in our current community palliative care project.
    I’m sorry I can’t make it to the CAPC conference this year.
    Best wishes and thank you.

  4. Juanita Meyerink says:

    I strive to bring this personal choice to my participants, and have visions of being able to fill my region with informed, educated, and self advocating participants.

  5. Carl E. Ver Beek says:

    This is an excellent explanation of a thought process which society needs to undertake. Some of us have been trying to engage our community in a process encouraging advance care planning and palliative care. It is difficult to harness the resources for this but, over time, to do so is very important for the well being of individuals and society. It is also urgent as public policy regarding the allocation of health care resources is under increasing stress.

  6. Excellent article! It also motivates me to keep on keepin’ on. Effecting social change is not a quick and easy process, especially one as emotionally charged as advanced care planning can be. I have been through Dr. Hamme’s Respecting Choices training and am passionate about spreading the word regarding the importance of ACP before there is an emergency! Thankfully I have a job that allows me to exercise that passion as director of clinical care for a hospice! Congratulations on following your heart and I can’t wait to read the book you mentioned above.

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