Meeting Recap
Assessing Progress in End-of-Life and Serious Illness Care
May 23, 2016
National Academy of Medicine | Washington, DC
Background
A total of 93 organizations were represented at the meeting.
On Monday, May 23, 2016, the National Academy of Medicine (NAM) hosted “Assessing Progress in End-of-Life and Serious Illness Care,” a private working meeting for stakeholders to assess progress since the September 2014 release of Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Participants catalogued examples of progress and remaining barriers in five key areas: (1) delivery of person-centered, family-oriented care; (2) clinician-patient communication and advance care planning; (3) professional education and engagement; (4) policies and payment systems; and (5) public education and engagement. At the conclusion of the meeting, participants generated 3-5 top priority action items in each area (see Breakout Sessions below). These action items will inform the strategic planning of a new Roundtable on Quality Care for People with Serious Illness at the National Academies of Sciences, Engineering, and Medicine (the Academies). For more information about the Roundtable, contact Laurie Graig.
Welcome–Dying in America: 18 Months Later
Victor J. Dzau
President, National Academy of Medicine
Dzau opened the meeting by reminding participants of the major findings and recommendations of the Dying in America report and outlining the Academies’ dissemination efforts during the past 18 months. Dzau outlined key examples of national progress toward the recommendations, including recent policies proposed or implemented by the Centers for Medicare & Medicaid Services (CMS) and expected outcomes from the U.S. Senate Finance Committee’s Bipartisan Chronic Care Working Group.
Dzau also summarized results from an NAM questionnaire to assess impact from Dying in America and identify remaining needs and priorities. Summary results from the questionnaire are available. Nearly 500 people, almost half of whom were health care providers, responded to the questionnaire. About one-third of respondents felt end-of-life care had improved in the past 18 months, while about half believed it had stayed the same.
Keynote Address
Patrick Conway
Deputy Administrator for Innovation and Quality and Chief Medical Officer
Centers for Medicare & Medicaid Services
In his keynote address, Conway noted that Dying in America has had “major impact across America” and thanked meeting participants for focusing on its implementation. In addition to sharing personal and patient stories to illustrate the importance of high-quality care and communication near the end of life, he outlined five aspects of CMS’s work with relevance to end-of-life and palliative care: (1) implementation of quality measures for hospice; (2) payment adjustments, including for advance care planning and hospice services; (3) quality improvement and new models of care, including Accountable Care Organizations and the Comprehensive Primary Care Initiative; (4) early lessons from the Medicare Care Choices Model; and (5) other opportunities and needs for payment learning in the hospice and palliative care arena.
During the Q&A session that followed his remarks, Conway touched on gaps in professional education and training; CMS’s limited role in allocating graduate medical education funding; early positive results from the Independence at Home Demonstration Project; and the emerging role of entrepreneurship in care delivery for frail, elderly, and disabled populations.
Overview of the Day
Philip A. Pizzo
Founding Director, Stanford Distinguished Careers College; David and Susan Heckerman Professor and Professor of Microbiology and Immunology; and Former Dean of the School of Medicine, Stanford University
David M. Walker
Senior Strategic Advisor, PwC, and Former U.S. Comptroller General
Pizzo and Walker were co-chairs of the committee that authored Dying in America.
In brief remarks, Pizzo noted that Dying in America was an continues to be a unique and exemplar report for the Academies, due in part to the universality and seriousness of the topic, the generous support from an anonymous donor, the interdisciplinarity of the committee, and the Academies’ ongoing commitment to dissemination of the findings and recommendations. Pizzo also cautioned that the NAM questionnaire findings could actually be interpreted as negative overall, in that so many challenges remain in the end-of-life care arena. He remarked that end-of-life care issues can be understood as a mirror for changes needed in the U.S. health care system more broadly.
Walker commented that our current delivery and payment systems all too frequently do not result in high-quality, compassionate, cost-effective care that is consistent with patient wishes. He stated his belief that if the Dying in America recommendations were to be adopted, the three critical elements of choice, quality, and compassion would be enhanced, as well as the cost-effectiveness and sustainability of the overall health care system. Walker also noted several elements important for transformational change—involvement of a broad range of players, coordination, integration, communication, a clear definition of outcomes, and a focus on what each of us is capable of doing immediately and with current resources. He also commented that the terminology used by those working in this field do not resonate with mainstream Americans and should be revisited.
Aspen Health Strategy Group: Big Ideas in End-of-Life Care
Kathleen Sebelius
Co-Chair, Aspen Health Strategy Group; President and CEO, Sebelius Resources; and Former Secretary of the U.S. Department of Health and Human Services
Sebelius described the new Aspen Health Strategy Group (AHSG), an initiative of the Aspen Institute of which she and Tommy Thompson are co-chairs and Dzau is a member. The AHSG will concentrate on issues that can be brought to the table more effectively by the private sector than the public sector; she noted that, in her opinion, end-of-life care is one of these issues. Indeed, the AHSG has chosen EOL care for its inaugural study and aims to produce five paradigm-changing “big ideas” in this area.
Sebelius also referenced Patrick Conway’s remarks and noted that the “death panel” controversy gives a glimpse into why it can be so difficult for government to take the lead in conversations about reforms to end-of-life care. Six years elapsed between the first utterance of the “death panels” phrase and the implementation of the new CMS payment code for advance care planning. Sebelius said she believes that momentum in this area will have to come first from the private and clinical sectors, as well as from patients and families.
Panel: Perspectives from Stakeholders
Judith Peres, Social Work Hospice and Palliative Care Network
Jennifer Malin, Anthem, Inc.
David Meyers, Agency for Healthcare Research & Quality
Kristen Santiago, Cancer Support Community
Deborah Trautman, American Association of Colleges of Nursing
Harriet Warshaw, The Conversation Project
Kevin Weiss, Accreditation Council for Graduate Medical Education
Judith Peres, Moderator
Founding Board Member, Social Work Hospice and Palliative Care Network
In brief remarks, Peres expressed excitement to see such a full room and so much enthusiasm after working in the hospice and palliative care arena for over 40 years, but cautioned that there is still much work to be done. She cited recent research that found palliative care is still stigmatized by the public, pain is still prevalent in intensive care units, and communication is still fractured among providers and patients. Before introducing the panelists, Peres touched on the role of social work in the end-of-life care space, noting that social workers are integral to the interdisciplinary care team, bringing essential communications knowledge, cultural competencies, and frontline interactions with patients and families.
Kristen Santiago
Senior Director, Policy & Advocacy, Cancer Support Community
Santiago provided background on Cancer Support Community (CSC), which provides a range of EOL care services through its affiliates, including workshops and support groups. She noted that individuals often turn to CSC to have EOL conversations because they are not able to have these conversations with their providers. The CSC model is upfront about the possibility of not surviving cancer. “It’s no secret that people die here,” Santiago said. CSC believes this attitude fosters conversations that make the process for everyone—patients, families, and caregivers.
Santiago said CSC affiliates had not noticed any changes in the EOL care landscape during the past 18 months, but noted that 18 months is a short time and CSC was already very active in this space. She described several CSC resources, including Open to Options, a tool currently being validated for EOL issues, and Cancer Support Source, a distress screening referral and follow-up care program that could one day be used to refer people to palliative care. To conclude, Santiago remarked that the top 5 concerns cited by patients in the CSC Cancer Experience Registry can all be addressed and managed by palliative care. “People are hungry for this information, and we know they can handle it,” she said.
Deborah Trautman
President and CEO, American Association of Colleges of Nursing
Trautman began by referencing the “truly longstanding” effort among the nursing community to embrace palliative care, and noted that nurses spend more time with patients than most other health professionals, attending to physical, psychosocial, and spiritual needs as well as working in the community. She said that nurses have a responsibility to do more to advance excellence in education and interprofessional teamwork; to go further in engaging patients, families, and communities; to become more involved in advocacy; and to continue to contribute to science and research.
The American Association of Colleges of Nursing (AACN) has been focusing on the professional education and development issues noted in Recommendation 3 of the Dying in America report for the past 16 years, Trautman explained. The End-of-Life Nursing Education Consortium (ELNEC) was designed by nurses to teach nurses, but has recently became more interprofessional. A comprehensive curriculum that has continuously evolved and improved to meet the needs of many health professionals, ELNEC includes modules on pain and symptom assessment and management; ethical and legal issues; cultural and spiritual needs; communication; loss, grief, and bereavement; a focus on the final hours of life; and leadership involved in advancing quality care. The curriculum now includes a pediatric and geriatric focus and has been translated into eight languages. With support from the Cambia Health Foundation, AACN is now working to increase online access to ELNEC.
Kevin Weiss
Senior Vice President, Accreditation Council for Graduate Medical Education
Weiss explained that the Accreditation Council for Graduate Medical Education (ACGME) is just one lever in a very complex system controlling medical education. He acknowledged that Dying in America’s recommendations for regulators like ACGME uncovered basic needs that the organization is working to address. Weiss raised three questions: (1) What should be the core competencies for physicians at three stages—before they graduate from medical school, upon entering practice, and as experienced practitioners in need of ongoing education? (2) Which issues are owned by profession of medicine writ large, and which are owned by a particular medical specialty? (3) Considering that physicians are only one part of the interprofessional care team, how does that affect core competencies?
Weiss explained that ACGME currently has 138 requirements across specialties, one of which relates to EOL care. However, the organization has other important nonregulatory tools. “We can’t regulate ourselves into excellence,” Weiss said. For example, ACGME has developed competency Milestones, the Clinical Learning Environment Review (CLER), and educational program activities. In the CLER program, Weiss does clinical site visits and talks to providers about six key topics. The visits, which happen every two years, are not regulatory in purpose. The only requirement is having a conversation. “This model is very rare for a regulator,” Weiss said. “We believe formative learning can unleash potential more than regulatory drive.” In conclusion, he directed participants to the recently released CLER report, which he said could serve as a tool for the EOL community to think about ACGME’s role in this space.
Jennifer Malin
Staff Vice President, Clinical Strategy, Anthem, Inc.
Malin summarized challenges faced by Anthem, Inc., as it works to deliver high-quality serious illness care to the 40 million Americans it serves. She noted that 60 percent of Anthem members with cancer have a hospital admission in the month prior to their death; one-third visit the intensive care unit.
Malin cited recent research demonstrating the “remarkable” potential benefits of palliative care, including a 3-month improvement in survival with same or better quality of life as well as cost savings. “If this were a new drug, we’d be paying $15,000 a month for it, no questions asked,” Malin said. She noted that, although there has been great progress in palliative care access across the country, much of it is inpatient-based. Small hospitals have less access, and availability of specialist palliative care is particularly limited. There is only 1 specialist palliative care provider for every 20,000 individuals with chronic illness, Malin reported. This equates to a shortage of about 18,000 physicians, she said. Malin stressed that the workforce gap cannot be filled by specialists; instead, there should be a greater focus on primary palliative care—something “every physician caring for someone with advanced illness should be responsible for.”
Recently, Anthem expanded its hospice benefit life expectancy requirement to 12 months rather than 6, while still providing for access to other medical care. However, several state regulatory bodies have not approved the expansion, Malin said. She also described unexpected challenges involved with adding palliative care providers to Anthem’s online directory. Because the official name of these specialists involves the term “hospice,” it can be off-putting to someone early in the care journey, she explained.
Malin concluded with a personal story to illustrate changed needed in the system. After a biopsy on a mass in her 90-year-old father-in-law’s pancreas proved inconclusive, his oncologist was unable to provide any information about prognosis. Malin and her family turned to a palliative care physician to explore the possibility of hospice, but the physician said she was unable to discuss hospice without information about prognosis. So, Malin and her husband, both of whom are physicians, held a family meeting themselves, enabling her father-in-law to die comfortably 8 days later. This story, Malin explained, shows that it’s not enough to simply have palliative care available—it must be integrated and empowered by the organization.
David Meyers
Chief Medical Officer, Agency for Healthcare Research & Quality
Meyers provided background on the Agency for Healthcare Research and Quality (AHRQ), the smallest operating division of the U.S. Department of Health and Human Services. AHRQ focuses research and development to support a system that delivers high-quality, safe health care for all people at all times. AHRQ aims to promote accessibility, equity, and affordability and generate new knowledge. However, Meyers cautioned that knowledge itself doesn’t create change. “People have to believe it and believe they can do it,” he said. Therefore, AHRQ also focuses on training and tools to help people understand new knowledge and change practices.
At AHRQ, Meyers, said, “we’re the evidence geeks.” The agency creates measurements and collects data to understand how a given policy is impacting care and shares this information with policy makers. In reflecting AHRQ’s role in EOL care, Meyers noted that the agency recently hosted a national listening session to identify research gaps, including in the EOL space. AHRQ is also examining how technologies such as electronic health records can be better leveraged. Finally, in terms of measurement, Meyers remarked that most metrics are specific to individual conditions rather than looking holistically at the needs of patients and families. This lack of measures makes it difficult to establish standards, ensure accountability, and pay for high-quality care. “We need a new measurement paradigm that looks at whole-system care for people with serious and complex illnesses,” Meyers concluded.
Harriet Warshaw
Executive Director, The Conversation Project
Warshaw described The Conversation Project’s (TCP’s) commitment to the “challenging and elusive work of engaging people in defining their own values, goals, and preferences and making sure the care team understands their wishes.” To achieve this goal will require “a cultural shift, both in the health care system and in the public square,” she said.
During the past 18 months, TCP has achieved both national and international media coverage and has released new tools for both the public and clinicians, including “starter kits” for families with seriously ill children and for families facing a diagnosis of Alzheimer’s or other form of dementia. TCP also held a webinar and released a 1-page overview to teach communication and coding skills to clinicians to facilitate implementation of the new Medicare ACP payment and created a five-part training program for health care systems to become prepared to accept records and respect wishes.
To tackle the challenge of reaching “the uninterested,” or those not engaged in this issue, TCP launched a public messaging campaign called Talking Matters. The campaign, which included transit system advertisements, Facebook ads, and pro bono media placement, yielded a significant increase in interest in TCP’s website and materials. Warshaw suggested it might be time for a national public messaging campaign.
Warshaw concluded by remarking that there has been significant cultural change since Dying in America was released, including mainstream cultural events such as Being Mortal, The Fault in Our Stars, and the Brittany Maynard case. “There has been a shift and we should get on that wave,” she said.
Case Study: Dying in California
Sandra R. Hernández, President & CEO, California Health Care Foundation
Judy Thomas, President & CEO, Coalition for Compassionate Care of California
Hernández and Thomas presented on the status report Dying in California, a joint initiative of the California Health Care Foundation (CHCF) and the Coalition for Compassionate Care of California (CCCC), which used Dying in America as a blueprint to assess California’s progress.
Hernández began by noting that Dying in California offers an example of how a philanthropic organization can use a number of different levers, including research, to advance end-of-life issues in one of the most diverse states in the country. CHCF’s work is particularly focused on low-income families with diverse, culturally nuanced histories sets of values. “The challenge in California in part is how to make patient-centered values and this movement culturally relevant to them,” Hernández said.
Thomas remarked that the 1997 Approaching Death report laid the foundation for the first wave of improvements in care for the seriously ill. When Dying in America was released 17 years later, CCCC and CHCF saw it as an opportunity to assess California’s progress to date and begin to shape efforts for the next 10 years.
In order to communicate findings from Dying in California and continue to advance public understanding of end-of-life issues, CHCF worked with New America Media, an aggregate of ethnic media organizations, to develop culturally relevant framing and distribute information in diverse communities. The process revealed challenges around nomenclature; for example, there is no literal translation for “palliative care” in Spanish. “You’re going to need a whole other lexicon to truly put the patient at the center,” Hernández said.
Thomas briefly summarized the process of gathering information for Dying in California, which included a literature review, online survey, and telephone interviews. She noted that, although she had originally hoped to create a “dashboard” of information, the findings were ultimately more suited to a narrative approach–similar to the structure of Dying in America.
Hernández noted that California has benefited from sympathetic leadership in this area. Diane Dooley, Secretary of the California Health and Human Services Agency, has a committed interest in palliative care, and has embedded it in Let’s Get Healthy California, her blueprint for state health progress. “We have the wind at our back in terms of the legislature,” Hernández said. CHCF is taking advantage of the climate by working to expand palliative care in the community setting, launching an online POLST registry, and developing paired payer/provider initiatives, among other projects.
“We were fortunate to be on the opposite coast from the ‘death panels’ dialogue,” Thomas said. California is currently implementing Senate Bill (SB) 1004, which expands access to palliative care across the state. Hernández highlighted SB 1004 as an “important scale leverage point,” as it will expand palliative care to the one-third of Californians covered by MediCal–many of whom are members of low-income communities.
Thomas mentioned the importance of faith communities in advancing end-of-life care issues but noted a significant challenge in identifying and building relationships with faith leaders. “They’re not all together on a listserv somewhere,” she said.
Hernández concluded by describing CHCF’s effort to leverage the success of Being Mortal by affording small grants to diverse neighborhood groups to watch the film and have a conversation. “Most venues had 100 people, easily,” she said.
Breakout Groups
Delivery of Person-Centered, Family-Oriented Care
Jean Kutner, University of Colorado
Clinician-Patient Communication & Advance Care Planning
Patricia A. Bomba, Excellus BlueCross BlueShield & MedAmerica Insurance Company
Professional Education & Development
Christian Sinclair, American Academy of Hospice and Palliative Medicine
Policies & Payment Systems
Joan Teno, University of Washington
Public Education & Engagement
Naomi Karp, Consumer Financial Protection Bureau
Participants cycled through two 70-minute breakout sessions organized by Dying in America recommendation area. Each group generated a list of barriers and opportunities, as well as top-priority actions and actors for each area. Report-outs synthesized common themes from both sessions.
Delivery of Person-Centered, Family-Oriented Care
Facilitator: Jean Kutner, Chief Medical Officer, University of Colorado Hospital; Professor of Medicine and Associate Dean for Clinical Affairs, University of Colorado School of Medicine
Clinician-Patient Communication & Advance Care Planning
Facilitator: Patricia A. Bomba, Vice President and Medical Director, Geriatrics, Excellus BlueCross BlueShield & MedAmerica Insurance Company; Chair, MOLST Statewide Implementation Team & eMOLST Program Director; Chair, National Healthcare Decisions Day NYS Coalition
Professional Education & Development
Facilitator: Christian Sinclair, President, American Academy of Hospice and Palliative Medicine; and Assistant Professor, Palliative Medicine, Kansas University Medical Center
Policies & Payment Systems
Facilitator: Joan Teno, Professor of Medicine, Division of Gerontology and Geriatrics, Cambia Palliative Care Center of Excellence, University of Washington
Public Education & Engagement
Facilitator: Naomi Karp, Senior Policy Analyst, Office for Older Americans, Consumer Financial Protection Bureau
Introduction: Roundtable on Quality Care for People with Serious Illness
Leonard D. Schaeffer, Judge Robert Maclay Widney Chair, Sol Price School of Public Policy, University of Southern California
Schaeffer, alongside James Tulsky, will chair a new Roundtable on Quality Care for People with Serious Illness at the National Academies of Sciences, Engineering, and Medicine (the Academies). The Roundtable will reside in the Health and Medicine Division of the Academies under the Board on Health Care Services, with input from the Board on Health Sciences Policy. Laurie Graig is the staff director of the Roundtable.
The Roundtable will use the Dying in America recommendations as a framework for its activities over the next three years. Its strategic planning will also be informed by discussions at the May 23 meeting described herein, as well as by emerging needs.
Closing Remarks
Victor J. Dzau
President, National Academy of Medicine
Dzau closed the meeting by thanking participants for their commitment to this important issue and celebrating the significant progress made during the past 18 months. He shared his optimism that the time is right for change and underscored the Academies’ ongoing commitment to facilitating progress in end-of-life care.
DISCLAIMER
This meeting recap is intended to inform and stimulate discussion. This document does not necessarily reflect the views of the National Academy of Medicine (NAM). This document has not been subjected to the review procedures of, nor is it a report of, the NAM or the National Academies of Sciences, Engineering, and Medicine.
