Time to Fashion A Quilt From The Patchwork Of Advance Care Planning

Thank you for David Tuller's outstanding synthesis of the issues and opportunities surrounding end-of-life discussions in the United States, presented in the March 2016 Health Affairs Entry Point, "Medicare Coverage For Advance Care Planning: Just The First Step." Despite strong public will for these critical conversations, Tuller says that training of the health care workforce is critically needed because "…clinicians [are] woefully unprepared to fulfill their responsibilities to patients."

I agree both as a professional at The John A. Hartford Foundation, where I work to improve end-of-life care for older adults, and personally as someone living with Stage IV incurable cancer.

There are many organizations focused on improving the quality of—and access to—discussions about values and treatment preferences in the care of serious illness. Improvement occurs through provider training, implementation of evidence-based models of care, and public campaigns to drive consumer demand for these critical conversations.

While there have been strong and significant efforts to address advance care planning in many communities, the work has been largely siloed and disparate. A national strategy and consortia of funders are necessary to fully capitalize on the existing human capital and training resources to drive meaningful change.

In June 2015, The John A. Hartford Foundation convened leading experts in the field, along with representatives of health care foundations from around the country, to develop a national strategy for collective action. With the surge in public support and the prospect of Medicare offering reimbursement for advance care planning in the 2016 Physician Fee Payment Schedule, it was time to "fashion a quilt" from the existing patchwork of activities.

To this end, The John A. Hartford Foundation recently approved a grant in the amount of $3.5 million to

• Provide core support to scale national efforts to improve care during serious illness and at end of life, and
• Create a collective impact initiative for leaders of six John A. Hartford Foundation–supported projects to work across and beyond their own programs to drive field-building efforts such as workforce training.

The initiative's grantees include the Center to Advance Palliative Care (Diane Meier), Ariandne Labs' Serious Illness Care program (Susan Block and Atul Gawande), The Conversation Project (Ellen Goodman), the National POLST Paradigm (Amy Vandenbroucke), the Coalition to Transform Advanced Care (also known as C-TAC) (Tom Koutsoumpas) in partnership with Respecting Choices (Bud Hammes), and Vital Talk (Tony Back).

"Care at the end of life is fraught with challenges that advance care planning can remedy," says Terry Fulmer, president of The John A. Hartford Foundation. "Without these conversations, families and health care providers grapple with decisions having no understanding what the person would have wanted. We can and must do better."

This grant alone is not sufficient. Numerous other foundations are engaged in the work, and we believe that, together, we can make important improvements in the care of people who are seriously ill and at the end of life.

My interest in this serious work is deeply personal, as well as professional. As a person living with Stage IV incurable cancer ("Living Life in My Own Way—and Dying That Way as Well," Health Affairs Narrative Matters, April 2012), I understand the importance of conveying information about the kind of care I want to my family and my health care team, and documenting these choices as an advance directive in my medical record. Given that 75 percent of people hospitalized with a critical illness cannot make their wishes known at that time, advance care planning is an important means for us to receive the care we want and to avoid the care we don't want.

This conversation and subsequent treatment decisions have allowed me to live well in the face of terminal illness for five-and-a-half years. I have been able to avoid burdensome treatment and focus on feeling well for as long as possible. The discussion with my oncologist led to appointing my mother as my health care proxy. And to tailor treatment to my goals and preferences, palliative care—an extra layer of support to help people with serious illness manage pain and symptoms—is an integral component of my care.

As the Centers for Medicare and Medicaid Services (CMS) weighed its momentous decision to pay for advance care planning, I authored a piece featured in the Washington Post Health and Science section, "A Nurse with Fatal Breast Cancer Says End-of-Life Discussions Saved Her Life." The article's positive message was received by CMS leadership and further amplified by public comments to CMS that were overwhelmingly in favor of Medicare payment for end-of-life discussions.

Not long after, CMS announced the new payment codes. That announcement was, as Tuller wrote, an important first step.

It's time to take up the gauntlet and turn the best practice of advance care planning into common practice.

Related reading:

"Live Well, Die Well: Thoughts on the Best Care Possible through the End of Life," by Erica Hallock of Empire Health Foundation, GrantWatch section of Health Affairs Blog, November 5, 2015.

from Health Affairs Blog http://ift.tt/1qfERTX