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Proceedings of a Workshop
Pages 1-78

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From page 1...
... These disparities are partly due to, or exacerbated by, factors such as race, ethnicity, gender, geography, socioeconomic status, or insurance status. The National Academies of Sciences, Engineering, and Medicine's Roundtable on Quality Care for People with Serious Illness hosted a public 1 The planning committee's role was limited to planning the workshop, and the Proceed ings of a Workshop was prepared by the workshop rapporteurs as a factual summary of what occurred at the workshop.
From page 2...
... The workshop's first session provided a foundational overview of the challenges and opportunities related to improving access and advancing health equity for people of all ages living with serious illness and explored the role of trauma-informed care.
From page 3...
... FIGURE 1  A social ecological model for improving access to care and achieving health equity. NOTE: AHRQ = Agency for Healthcare Research and Quality; CDC = Centers for Disease Control and Prevention; NIH = National Institutes of Health.
From page 4...
... This Proceedings of a Workshop summarizes the presentations and discussions from the public workshop Improving Access to and Equity of Care for People with Serious Illness. The speakers, panelists, and workshop participants presented a broad range of views and ideas, and Box 1 provides 3 As of March 2016, the Health and Medicine division of the National Academies of Sci ences, Engineering, and Medicine continues the consensus studies and convening activities previously carried out by the Institute of Medicine (IOM)
From page 5...
... (Chin, Johnson, Maguire) • Design effective interventions that are multifactorial; are part of culturally tailored quality improvement initiatives; provide nurse-led, team-based care; include families and communities as part of the care team; use community health workers; and provide interactive, skills-based train ing to patients.
From page 6...
... (Dawes) • Foster a more diverse, team-based approach to serious ill ness care through education, communication training, and leadership development that includes community health workers.
From page 7...
... • Use peer navigators to increase access and achieve health equity, and employ community health workers to educate and improve community health in ways that go beyond their traditional role of care coordinators. (Clauser)
From page 8...
... • Improve workforce training and consumer education through the Palliative Care and Hospice Education and Training Act. (Bishop)
From page 9...
... The workshop speakers' presentations have been archived online (as PDF and audio files) .4 UNDERSTANDING THE CONTEXT FOR IMPROVING ACCESS TO AND EQUITY OF CARE FOR PEOPLE WITH SERIOUS ILLNESS The first session provided context for exploring the broader issues of expanding access to care and advancing health equity.
From page 10...
... "We have to continue to scream at the top of our lungs to make a difference in our community," said Hempstead, "and it should not be like this." Cierra Sisters has now expanded to address inequities in treatment for African American women with endometrial cancer. The resulting Endometrial Cancer Action Network for African-Americans (ECANA)
From page 11...
... The goal of all of these efforts, noted Hempstead, is for African American women to receive the same care as White women. Lessons Learned for Achieving Health Equity Across Diverse Populations Marshall Chin, the Richard Parrillo Family Professor of Health Care Ethics at The University of Chicago, began his presentation with five lessons he has learned from more than 20 years of work on multi-level interventions to achieve health equity: 1.
From page 12...
... However, he was able to identify a few commonalities among effective interventions, including those that were multifactorial; were culturally tailored quality improvement initiatives; had nurse-led, team-based care; integrated family members and community partners; used community health workers; and provided interactive, skill-based training to patients (Chin et al., 2012)
From page 13...
... Implement Quality Improvement Infrastructure and Process • Situate equity as a cross-cutting dimension that underlies all other dimensions of quality. • Quality improvement efforts have to start with a root cause analysis that identifies the drivers of disparities.
From page 14...
... Accountability, he said, entails stratifying clinical performance measures by factors such as race, ethnicity, socioeconomic status, disability status, and serious illness. Turning to the newest iteration of his RWJF-funded project, Chin explained that he and his colleagues are working with three major s ­takeholders -- state Medicaid agencies, Medicaid managed care organizations, and frontline health care organizations -- to align their efforts to use payment and care transformation to advance health equity.
From page 15...
... "We can do better." Disparities in Serious Illness Care for African Americans Kimberly Johnson, associate professor of medicine and senior fellow in the Center for the Study of Aging and Human Development at the Duke University School of Medicine, began her presentation with the story of her maternal grandmother, Bertha Stokes, who was diagnosed with cervical cancer in the 1950s. Living in a small town in rural Mississippi, Stokes received care at the local hospital and then from a large public hospital in New Orleans.
From page 16...
... . This difference is important because the availability and use of palliative care has been shown to reduce disparities in hospice referral, symptom burden, discussion of treatment preferences,
From page 17...
... . "Palliative care consultation is one potential intervention to improve disparities," said Johnson (Rhodes et al., 2007)
From page 18...
... . Johnson pointed out that despite these barriers, there are opportunities to improve the care experience and reduce disparities in serious illness care through community education, outreach, and partnership with the people and institutions in the community with whom patients have their daily interactions outside of the health care system.
From page 19...
... "We realized that while the biomedical focus of HIV care, like so much care for serious illnesses, is incredibly important, it is also profoundly insufficient," said Machtinger. "We realized then that we needed to transform our clinic to one that addresses trauma." When reviewing the research on trauma and engaging in advocacy work to support this transformation, Machtinger explained that he and his colleagues realized the following: • Most illnesses and behaviors that contribute to health disparities are correlated strongly with individual-, family-, and community-level trauma.
From page 20...
... of transgender African American women are estimated to be living with HIV (CDC, 2019d)
From page 21...
... This second realization, said Machtinger, underscores why so many medical conditions are stubbornly refractory to supposedly effective therapies. In his view, the difficulties practitioners have helping people lose weight or stop smoking, even in the face of serious health conditions, such as diabetes and lung disease, can be explained in part by the high rates of co-occurring trauma and posttraumatic stress disorder that go unrecognized and unaddressed in care plans.
From page 22...
... In developing a trauma-informed clinic for HIV patients, Machtinger and his partners discovered that this model is applicable to an array of other serious illnesses. One translatable factor is the power of partnerships to break down barriers between the clinic and community organizations.
From page 23...
... PROCEEDINGS OF A WORKSHOP 23 FIGURE 4  An evidence-based model for trauma-informed health care. NOTE: IPV = interpersonal violence.
From page 24...
... Machtinger noted that another approach to addressing disparities in health is to engage and integrate peers into health care. "Peers offer opportunities for patients to support each other's healing in ways medical providers cannot and help guide the medical system's response to their own needs," said Machtinger.
From page 25...
... In his view, such experiences are necessary for both patients and providers if the nation is ever going to make substantial progress toward reducing health disparities. Discussion Sarah Downer from Harvard Law School began the discussion with the panelists by asking what they thought needs to happen to change provider culture, which she called "one of the toughest nuts to crack." Chin replied that, in his experience, interactional and experiential trainings on cultural competency and health disparities have the best chance of getting health care professionals to commit to achieving health equity.
From page 26...
... Johnson replied that if the goal is to provide equitable care for people with serious illness, reaching that goal has to start with talking about equitable care further upstream. When she and her colleagues surveyed hospices about the issue, they found that hospices are thinking about it and see an opening to participate in efforts
From page 27...
... Chin added that there is a great untapped potential for greater involvement of PAs and NPs in serious illness care. Denise Hess from the Supportive Care Coalition commented that, while she has great admiration for the ACEs study that Machtinger discussed, she has noticed that patients can feel stigmatized by the results of that study.
From page 28...
... Whole Kids Outreach: Helping to Meet the Needs of Children with Complex Medical Problems Sister Anne Francioni, executive director of Whole Kids Outreach,16 led off the session by describing how her faith-based organization has been helping families with young children in rural southeast Missouri for 20 years by providing services through home visit outreach and nursing programs. Whole Kids Outreach also offers services through its physical site in Ellington, Missouri.
From page 29...
... "We are building up the person who hopefully is going to be the shaper of the culture in that family system," said Francioni. In addition to working with parents on health literacy, Whole Kids Outreach also works on building employment skills in parents to help address financial stress -- an important contributor to the pressures that affect these families.
From page 30...
... and provides an introduction to palliative care and advance care directives. This course aids Familias en Acción's clients with serious illness by helping families to understand what questions to ask of their providers before reaching the stage where they would need palliative care services.
From page 31...
... This story, Merecias said, illustrates two common roles of a community health worker: serving as a cultural bridge between the clinic and the community and as an advocate in the clinical environment. He explained that he has to tell providers that he is there with the patient as an advocate and explainer, not a language interpreter.
From page 32...
... "There is a good reason -- they do not want to die." In Stokes's view, the Chinese American community needs languageand culture-appropriate services and educational materials so that its members can communicate effectively with health care providers. The community also needs to trust the members of the care team and feel that that team respects its culture.
From page 33...
... To raise awareness that CACCC materials are available, not just for her community in California but for all Chinese Americans, Stokes has engaged in newspaper and television campaigns and she and other CACCC volunteers regularly conduct community outreach at senior centers and other venues used by the Chinese community. Another service CACCC offers is a Chinese volunteer hospital ambassador program.
From page 34...
... Merecias said his organization's best connection with the health system is through social workers rather than clinicians. He noted, too, that health systems in the northwestern United States are starting to recognize the positive effect community health workers can have with their patients.
From page 35...
... She suggested that the panelists examine whether their programs were having any effect on reducing unwanted hospitalizations or emergency room visits, which might open up opportunities for reimbursement. IMPROVING ACCESS TO CARE AND ACHIEVING HEALTH EQUITY FOR PEOPLE WITH SERIOUS ILLNESS: PATIENT/FAMILY AND CLINICIAN PERSPECTIVES The workshop's third session began with a video provided and produced by Liz Margolies, founder and executive director of the National LGBT Cancer Center, which told the story of Jay Kallio, who was age 58 and a two-time cancer patient at the time the video was made.
From page 36...
... machine and the happy images that they had placed in the sightline were of three happy, smiling, White babies, when I knew I was in a predominantly African American county," Graves added. Communication Can Drive Health Equity in Serious Illness Care Justin Sanders, faculty member of the Serious Illness Care Program at Ariadne Labs and an attending physician in the Psychosocial Oncology and Palliative Care Department at the Dana-Farber Cancer Institute and the Brigham and Women's Hospital, spoke about the ways in which communication can drive health equity.
From page 37...
... In that context, health equity in serious illness care is more than just access to a specialist or primary palliative care physician. It must also consider the outcomes around which health equity is achieved -- through care that reflects the patient's goals, values, and preferences (goalconcordant care)
From page 38...
... 38 FIGURE 5  A model to explain how communication enables goal-concordant care. SOURCES: As presented by Justin Sanders, April 4, 2019; Sanders et al., 2018.
From page 39...
... He added that one reason is that professional training for many clinicians does not include communication skills. Clinicians can, however, be trained to communicate better, and there are a variety of programs that support clinician training in high-quality serious illness communication.
From page 40...
... "If you think about trust in the health care experience, and its correlates, such as satisfaction, I think of what we are trying to do with communication is enhance trust in systems that care for people, in part because that by itself can reduce the health systems contributions to allostatic load," explained Sanders. "We can demonstrate respect and caring through communication that enhances trust." As a final comment, Sanders said that if health communication has systematically made people feel devalued, communication can be used to repair the relationships that have been undermined over generations.
From page 41...
... One study, she said, found that 90 percent of LGBT individuals seen in the emergency department said they would answer questions about their sexual orientation and gender identity, but 77 percent of providers working in that emergency department said they would not ask that question because they believed it to be too intrusive (Haider et al., 2017)
From page 42...
... According to Margolies, public perception is that LGBT discrimination ended with the advent of marriage equality, but this is inaccurate. She explained that in 2016, lesbian, gay, and bisexual people were the second largest target of hate crimes, surpassed only by African Americans (Levin et al., 2018)
From page 43...
... , which Margolies explained was beneficial to the LGBT community, LGBT individuals are still much more likely to be uninsured than their non-LGBT peers and LGBT women are twice as unlikely to have a personal health care provider (Gates, 2014)
From page 44...
... . Margolies noted that given that tumor registries do not collect information about gender identity or sexual orientation, it is hard to say whether LGBT individuals suffer from more cancer than the general population.
From page 45...
... , which was very common in the early years of the HIV/AIDS epidemic. In closing, she noted that her organization has developed reports on best practices in cancer care for LGBT individuals.23 A View from the Safety Net: San Francisco Health Network Alice Huan-mei Chen, chief medical officer and deputy director of the San Francisco Health Network (SFHN)
From page 46...
... . "If you are someone with a serious illness and disability, four out of nine are covered by Medicaid," said Chen.
From page 47...
... SFHN screens its patients for race, ethnicity, language preference and proficiency, sexual orientation, and gender identity, said Chen. "What we do not do, surprisingly, is systematically screen for all those social needs, partly because you are opening a can of worms with that." Instead, SFHN is implementing an enterprise electronic health record system, which includes the means to record health-related social needs.
From page 48...
... and resources Substance Abuse / May see pt for Smoking Cessation Group Tx or classes Individual Tx, consultation, refer SeeSeSSeeSee ~6-16 sessions May follow/ Usually 6-10 back to PCP/BHC sessions stabilize select pts FIGURE 9  San Francisco Health Network primary care behavioral health teams. NOTE: BHS = behavior health services; NSMH = non-specialty mental health services; PC = primary care; PCP = primary care provider; PPN = private provider network; SMH = specialty mental health services.
From page 49...
... However, she said, health systems have only recently realized the extent to which Americans are food insecure. Across the United States, 12 percent of households are food insecure, said Chen, with that figure doubling in Latinx and African American children (Bauer, 2018; Feeding America, 2019)
From page 50...
... As a result, they felt helpless when encountering patients with those issues and wanted information on how to advocate for their patients. She called on the workshop participants to think about how to support medical students' training so that they can help empower their future patients and confront the issues that have a significant effect on their patients' health.
From page 51...
... As a final comment, James Tulsky, vice chair of the roundtable, wondered if serious illness care can serve as a type of pilot project to work on the issues the panel raised and incorporate solutions into the models of care being built around serious illness care. A POLICY AGENDA TO IMPROVE ACCESS TO CARE AND ACHIEVE HEALTH EQUITY FOR PEOPLE WITH SERIOUS ILLNESS As an introduction to the workshop's penultimate session, Sarah Downer, associate director of Whole Person Care and instructor at Harvard Law School's Center for Health Law and Policy Innovation, noted that chronic illness is the lens through which the Center focuses its efforts to use law and policy as a means of improving access to care and quality of care for underserved populations.
From page 52...
... . Many states, said Rowland, are looking at how to increase housing supports that can keep those with serious illness in the community, which would be helped by reauthorizing the federal Money Follows the Person demonstration30 that offered housing-related services and staff to support people moving from nursing homes to the community.
From page 53...
... . Rowland noted that in her view, the home- and community-based benefit needs to be further expanded to reduce the reliance of many states on the mandatory Medicaid nursing home benefit (see Figure 12)
From page 54...
... for an individual in 2015 was $11,770; HCBS = home- and community-based services; SSI = Supplemental Security Income. SOURCES: As presented by Diane Rowland, April 4, 2019; Musumeci et al., 2016.
From page 55...
... Rowland noted that a coverage gap exists for much of the low-income population, particularly among minorities, in the 14 states that have chosen to not participate in Medicaid expansion (Kaiser Family Foundation, 2019b)
From page 56...
... "When we look at the economic cost of serious illness, we need to broaden the lens to look at how much providing that support costs in addition to what health care programs cover and what they do not," advocated Rowland. In closing, Rowland emphasized that she believes the people who are most in need of assistance are often those with the fewest resources and lowest incomes.
From page 57...
... . However, the data for African American women show the United States is doing as poorly as Mexico and Uzbekistan, "where significant proportions of the population live in poverty" (Roeder, 2019)
From page 58...
... "This is not a pro-government/ anti-government point," explained Slavitt. "They just want a set of rules they can follow." Slavitt noted that studies show that more and more new jobs do not offer health care insurance today (Kaiser Family Foundation, 2017)
From page 59...
... Her hope is that the demonstration project will include a cross-section of the American public and not just one demographic group. Bishop discussed the second approach, which focuses on several new pieces of legislation, including the Rural Access to Hospice Act31 and the Palliative Care and Hospice Education and Training Act.32 The Rural Access to Hospice Act, introduced in April 2017, would increase access to underserved Medicare beneficiaries in rural areas and at federally qualified or community health centers (NHPCO HAN, 2017)
From page 60...
... The third approach that Bishop discussed involves looking at independent and innovative ways to eliminate the barriers to the hospice model of care so that people with serious illness can have timely access to personcentered, interdisciplinary care. One way to do that might be through structural reform of the Medicare hospice benefit, which is something NHPCO is studying.
From page 61...
... In her opinion, a public health focus and targeting geographical areas with the worst health outcomes is a promising approach to dealing with issues of equity, disparities, and access. Downer offered that funding the services that community health workers deliver in marginalized and underserved communities would make a big difference.
From page 62...
... POTENTIAL NEXT STEPS FOR IMPLEMENTING SOLUTIONS TO IMPROVE ACCESS TO CARE AND ACHIEVE HEALTH EQUITY FOR PEOPLE WITH SERIOUS ILLNESS Shonta Chambers, executive vice president for health equity initiatives and community engagement at the Patient Advocate Foundation, reminded attendees that the workshop was organized around the social ecological model. This model acknowledges there is a role for everyone, from the individual to policy makers, to bring about the culture change needed to achieve health equity and improve access to care for people with serious illness.
From page 63...
... In Dawes's view, the best solutions to health inequities should involve the most severely affected, employ an ecological approach, leverage peers, ensure access to high-quality communication, and build partnerships at all levels. The health sector by itself, he stressed, cannot address all of the factors that produce health disparities.
From page 64...
... Regarding health care teams, he pointed to the incredible amount of work on the potential key contribution of peer navigators in efforts to increase access and achieve health equity and on the new roles that community health workers can play in educating and improving community health beyond their traditional role of care coordinators, particularly in rural areas. Technology, said Clauser, can become an important component of the complex intervention packages needed to improve health equity and reduce disparities.
From page 65...
... One topic that stood out to her was the conversation around the training of laypeople, patients, community health workers, doctors, nurses, and other members of the care team. Training, said Barrett, has to include fearless conversations that acknowledge both the historical and current experiences that most marginalized and vulnerable populations deal with throughout their lives.
From page 66...
... The foundation's hope, she explained, is that these Sojourns Scholars will create a critical mass of leaders who will influence not only serious illness care but health care delivery in general. She noted that Sanders, who spoke in the third session, is a Sojourns Scholar, and a number of his fellow scholars are working on health disparities issues, mostly through a communication lens.
From page 67...
... One feature of her office's efforts is community-facing navigation that relies on community health workers to deliver evidence-based approaches for increasing access to quality care and advance health equity. This effort has been successful because it leverages trusted members of the community who understand the nuances of the local culture when working with individuals.
From page 68...
... For example, he noted that the predominantly African American communities in rural Georgia are extremely mistrustful of the health care system, but when those communities see health workers who look like them, they are more likely to agree to preventive services. Leveraging Connections and Developing Partnerships The last question Chambers posed to the panelists was to identify one specific action that could be taken at any level of the spheres in the social ecological model that would benefit the individual at the center of that model.
From page 69...
... "Storytelling is so important for advocacy, but it is also important for the work we are doing right now in terms of simply getting people access to the care they need," explained Barrett. She stressed the importance of "making sure that we create a trustworthy space for community health workers and other stakeholders to tell their stories and be key players in helping to move the work forward." Dawes quoted his friend, mentor, and former Surgeon General, David Satcher: "In order to eliminate disparities in health and achieve health equity, we need leaders who care enough, know enough, have the courage to do enough and who will persevere until the job is done." Closing Remarks Chambers concluded the workshop by stating, "We may not have all the answers, but we have the opportunity to do something.
From page 70...
... 2015. America's care of serious illness: 2015 state by-state report card on access to palliative care in our nation's hospitals.
From page 71...
... 2019. A view from the safety net: San Francisco Health Network (paper presented at Improving Access to and Equity of Care for People with Serious Illness: A Workshop, Washington, DC, April 4, 2019)
From page 72...
... American Journal of Hospice and Palliative Care 25(4)
From page 73...
... : A breast health education program for African American women. Journal of Community Health 43(5)
From page 74...
... 2013. Racial and ethnic disparities in palliative care.
From page 75...
... sfvrsn=0 (accessed August 13, 2019)
From page 76...
... Bethesda, MD: National Cancer Institute. NHPCO (National Hospice and Palliative Care Organization)
From page 77...
... 2018. Achieving goal-concordant care: A conceptual model and approach to measuring serious illness communication and its impact.
From page 78...
... 2015. Racial/ethnic differences in inpatient palliative care consultation for patients with advanced cancer.


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