Integrating Health Care and Social Services for People with Serious Illness Proceedings of a Workshop (2019) / Chapter Skim
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who.int/social_determinants/en (accessed September 21, 2018)
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. Integrating health care and social services, such as accessible housing, meals and nutrition services, transportation, and caregiver training, is particularly important for those facing serious illness who typically encounter multiple chronic conditions, pain and other symptoms, functional dependency, frailty, and significant family caregiver needs.4 In an effort to better understand and facilitate discussions about the challenges and opportunities related to integrating health care and social services for people with serious illness, the Roundtable on Quality Care for People with Serious Illness of the National Academies of Sciences, Engineering, and Medicine (the National Academies)
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. New community-based palliative care models are meeting the needs of those with a serious illness who are neither hospitalized nor hospice-eligible through provision of care in patient homes, physician offices/clinics, cancer centers, dialysis units, assisted and long-term care facilities, and other community settings.
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In fact, as we will learn more about today, this is one of the reasons we have such trouble taking care of some of the most important members of our community." Workshop planning committee co-chair Joanne Lynn, director of Altarum Institute's Center for Elder Care and Advanced Illness, opened the workshop by noting that the idea of integrating health and social services to better meet the needs of those with serious illness is both an important 6 CMS pays for voluntary advance care planning, which helps Medicare patients make important decisions regarding the type of care they receive and when they receive it. For more information, see https://www.cms.gov/Outreach-and-Education/Medicare-LearningNetwork-MLN/MLNProducts/Downloads/AdvanceCarePlanning.pdf (accessed October 22, 2018)
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Organization of the Workshop and Proceedings The workshop opened with an interview that highlighted the personal lived experiences of a family facing serious illness, the challenges of full-time caregiving, and the difficulty of securing needed social services. This opening session provided the real-world context of the importance of integrating health care and social services for patients and their families.
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Frank, a retired pharmacist, also suffers from several serious illnesses, including congestive heart failure, chronic obstructive pulmonary disease, rheumatoid arthritis and osteoarthritis, and diabetes. In introducing the family, Peres remarked that Andi, who celebrates her 35th birthday this year, represents the type of person with serious illness and disability who is living longer than would have been possible in the past because of the quality care her family has provided her.
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• Consider how to transform care delivery to support person and family-centered care to meet the health and social needs of people with serious illness and their families. (Feinberg)
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• Understand that caregiving is a longitudinal experience that changes over time. When thinking about integrating health and long-term care services or support services for caregivers, it is imperative to think about integration from a longitudinal perspective, as well as a point in time perspective, which is the current approach.
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• Implement the TRIO guidelines on how to involve family caregivers positively and effectively in care decisions and patient care. (Oliver, Van Houtven)
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• Turn the argument of whether to fund social services by funneling dollars through the health care system on its head. Target funding to build a strong social support infrastructure in which the medical care system works.
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On the other hand, if women stay home to care for loved ones and do not work, adults with serious illness are kept out of nursing homes and emergency departments, which reduces health care expenditures. (Van Houtven)
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The Spitales' journey to receiving benefits for Andi took a total of 21 months. When Frank developed pneumonia and sepsis, he was able to access a home health care benefit, which MaryAnn had learned about during their efforts to obtain benefits for Andi.
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Some of the caregiver group members shared their concerns over health insurance coverage given that they did not work outside of the home because they were caring for their spouses with serious illness, and were not yet old enough to qualify for Medicare. MaryAnn told the workshop audience that two friends, one in Canada and the other in the United Kingdom, who have children with the same condition as Andi, do not have to worry about health care coverage and costs.
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She noted, "Our topic is integrating health care and social services, and you have really set us on an interesting path. You really were the care manager, bringing together health care and social services." FRAMING THE ISSUES OF INTEGRATING HEALTH CARE AND SOCIAL SERVICES FOR PEOPLE WITH SERIOUS ILLNESS: GAPS, CHALLENGES, AND OPPORTUNITIES Building on the patient–family caregiver perspective, the workshop's first panel session framed the issues related to integrating health care and
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That is why we must transform care delivery to support person and family-centered care to meet the health and social needs of people with serious illness and their families." Reiterating the need for better integration of health care and social services, Feinberg emphasized, "it is time for our country to make a collective commitment for a more humane and caring society to address the artificial separation that we have between medical care and functional needs in daily living." Moreover, she noted it is critical "to address the needs of family caregivers, because as we saw, families are really the integrators of health care and social supports." She argued that value-based strategies and the recent enactment of the Creating High-Quality Results and Outcomes Necessary to Improve Chronic (CHRONIC) Care Act9 and the Recognize, Assist, Include, Support, and Engage (RAISE)
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Although the United States was the highest spender in terms of health care services alone, when accounting for expenditures on both health and social services combined, or the investments a nation makes to try to produce health for the population, explained Taylor, the United States dropped into the mid-range of other OECD nations, given its lower expenditures on social services (Bradley and Taylor, 2013)
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Taylor and her colleagues conducted a literature review to identify which social services produced better health outcomes and saved health care dollars. In sharing the results of the literature review, Taylor acknowledged that saving health care dollars might not be the appropriate metric by which to judge social service investments because, as she reasoned later, investments in the social service sector create returns to the health care sector, often in the forms of reduced utilization.
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She said there have been a series of health policies, on the national and state levels, and promoted by philanthropic organizations "to incentivize health care to pay much more attention to social services or social determinants of health programming." These policies are trying to "make sure that there are health care organizations that are holding financial risk, are really trying to work upstream to prevent people from getting ill in the first place or to keep them from getting worse," she added. Taylor cited some examples of this type of effort.
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She pointed out that funding social services through the health care delivery system may be more politically pragmatic, given the tendency to shy away from being seen as "advocating for a larger welfare state" if additional funding went through the social service delivery system. In addition, the health care system has a track record of responsiveness to financial incentives.
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Stone argued that it is imperative to think broadly and take a framework approach that starts with investing in the social infrastructure in which the medical care system works in order to support and address the concerns from patient and family caregivers as noted by previous workshop presenters. "How do we invest in that?
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"We ought to have a system that can wrap around and build in the medical care system when we need it, even for people with serious illness," Stone contended. Noting the changes in investments in the nation's social service infrastructure, Stone pointed out that the Department of Housing and Urban Development has eliminated its Section 202 program that helped expand the supply of affordable housing with supportive services for the elderly.
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Stone identified many questions that need to be answered if the nation is going to develop a truly integrated and team-based approach to health care that builds onto a social support framework, including 14 For further information, see http://www.leadingage.org/members/hud-announces awards-supportive-services-demonstration-grants (accessed September 18, 2018)
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While it is true that no system in the world has a truly integrated system, many other industrialized countries invest more in social services and social care, and are more effective in integrating these services with health care, as outlined by Taylor in her presentation. "I think the recent focus on valuebased payment strategies that support financing and delivery integration are promising, but I think a lot of the investments have been put in the wrong place," said Stone.
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She wondered how the panelists felt about the 15 Promotora refers to a health worker model wherein community health workers who are members of a target population are trained to provide culturally appropriate services as patient advocates, educators, mentors, outreach workers, translators, etc. For more information, see https://www.latinohealthaccess.org/the-promotora-model (accessed September 15, 2018)
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Another workshop participant pointed out that some health care systems are cutting back on social workers to trim budgets, even though clinical social workers help connect families and patients with services, and asked the panel how to best inform health system leaders about the value of social workers when the value does not immediately affect the bottom line. Taylor remarked that the question speaks to the issue of how to bring 16 For more information, see https://aspe.hhs.gov/basic-report/cash-and-counseling demonstration-experiment-consumer-directed-personal-assistance-services (accessed September 21, 2018)
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The family caregiver, which the workshop planning committee defined broadly as a spouse, care partner, parent, son, daughter, extended family member, friend, or volunteer, may share in those needs. As a result, said Miller, "any discussions we have about integrating health care and social support services for one who is seriously ill must also be shaped with a cognizance of the needs of the caregiver." Although this is not a new issue, Miller noted that it is clear that this is a time for those involved in research, policy, advocacy, and practice to attain the needed traction to determine, measure, translate, and validate the value proposition that social determinants affect health and should be included in priorities for future evolution of care models.
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Family caregivers currently are performing many of the complex health care services that in the past might have been provided by a professional nurse, such as giving injections or intravenous infusions. Moreover, family caregivers are doing this work without adequate training or support to carry out these tasks, or even an assessment of their ability to perform these tasks.
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20 conducted by the Johns Hopkins B loomberg School of Public Health. Drawing on NHATS data, Schulz identified three populations of people with serious illness: care recipients with dementia, those who are at the end of life and are expected to die within 1 year, and those who have three or more chronic illnesses.
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NOTE: ADL = activity of daily living; CG = caregiver; IADL = instrumental activity of daily living. SOURCES: As presented by Richard Schulz, July 19, 2018; adapted from NRC, 2010.
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0 Any IADL Any ADL Any Any unmet unmet mobility unmet need need unmet need need FIGURE 2 Percentage of older adults with unmet needs. NOTE: ADL = activity of daily living; CC = chronic conditions; DEM = dementia; EOL = end of life; IADL = instrumental activity of daily living.
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As a result, when thinking about integrating health and long-term care services or support services for caregivers, it is imperative to think about it from a longitudinal perspective, as well as a point-in-time perspective, which is the current approach. Second, not all caregivers need help, and many do fine with the challenges they face.
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Speaking about caregivers in general, Oliver said, "Our roles change, our schedules change, our careers are put on hold, and all for an unknown period of time." Referring back to the Spitales's experience in working to secure benefits for their daughter, Oliver characterized it as a good illustration of the "interactional suffering" families experience when trying to get care for their loved ones. As Oliver explained, interactional suffering results from the lack of attention, understanding, and communication.
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In Oliver's view, some simple steps can make the process easier for caregivers. First, she called for implementation of the Federal TRIO Programs guidelines21 on how to involve family caregivers positively and effectively in care decisions and patient care and how to manage challenging interactions with family caregivers.
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. Some of these spillover effects are positive, such as the fact that informal care leads to decreased nursing home entry, home health care needs, and Medicaid inpatient use (Charles and Sevak, 2005; Van Houtven and Norton, 2004)
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Family leave programs might help with coping skills and mood because caregivers might have less stress to deal with, and stipend programs might allow families to bring in the extra help they need but can rarely afford, such as respite care, adult day health programs, and home health aides. To focus on the potential benefits that sound policies can produce, Van Houtven discussed how paid family leave programs can enhance the positive and minimize the negative spillovers of caregiving for people with serious illness.
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On the other hand, when women stay home to care for their loved ones, adults with serious illness are kept out of nursing homes and emergency departments, which reduces Medicaid expenditures, and by extension, has a positive impact on the U.S. health care budget.
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. In fact, approximately 30 percent of home care workers rely on public assistance for food security, and most rely on Medicaid to cover their health care needs (Goldman, 2017)
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In November 2018, for example, Maine will vote on the Homecare for All ballot initiative, which would create a dedicated fund to provide in-home care for all seniors, provide supports to family caregivers, and increase care worker wages. She explained that a board composed of caregivers and care recipients would oversee the resulting trust fund, putting what Gupta calls the caring majority -- those directly affected by the care system -- in charge of decisions about benefits, the workforce, and other aspects of the program.22 22 For more information, see https://mainersforhomecare.org (accessed August 29, 2018)
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Lipitz Center for Integrated Health Care at the Johns Hopkins Bloomberg School of Public Health, discussed ways in which the United States can make a difference in the areas of research, policy, and practice to produce a more supportive care delivery paradigm in the future. Wolff first acknowledged that individual clinicians and health care professionals are enormously committed to meeting the needs of individuals with serious illness and their families.
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Wolff added, "a challenge is that because families fall outside formal regulatory, legal, and financial arrangements, they are largely invisible in care delivery." This situation leads to missed opportunities in terms of understanding how to better identify and support families and individuals with serious illness, particularly those who are at risk. Wolff explained that effective interventions do exist to help families of individuals living with serious illness.
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FIGURE 4 Framework for caregiver interventions. caregiver interventions, Socio-ecological framework for 41 SOURCES: As presented by Jennifer Wolff, JulyReport: NASEM, 2016.
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Washington State, for example, is integrating efforts supported by the Administration for Community Living and the National Family Caregiver Support program with its Medicaid programs.26 In addition, the federal government has taken several promising steps, such as creating new Medicare billing codes that allow clinician reimbursement for non-face-to-face interactions with patients and families that educate and counsel family caregivers.27 Moreover, Medicaid, said Wolff, is starting to expect that caregiver assessment will occur when the care plan requires involving a family caregiver, and bundled payment models will allow providers the flexibility to innovate and develop new approaches to better support individuals and their family caregivers. "These developments are, for the most part, providing the opportunity, rather than a mandate, for care delivery to engage families, which we might hope would be moving in the future to thinking about systematic strategies that would make possible engagement of families more broadly," said Wolff.
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Van Houtven replied that although FMLA has a 12-week limit, experience in California has shown that it reduced the number of people with serious illness who used a nursing home. She noted there is some evidence that the Act is helping people remain at home for longer than 12 weeks.
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Wolff replied that this is an emerging and important area, one made more complex because families are not currently visible, as noted earlier, in systems of care. In her view, the place to start is with a target population of individuals with serious illness and make a concerted effort to develop data management systems and data capture systems with structured fields that include whether a family member is present and who that family member is.
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Gupta replied that there are a few, though she could not provide details on those projects. Marian Grant from the Coalition to Transform Advanced Care said her organization has worked for years with communities on faith-based efforts for serious illness, both for patients and families.
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In her view, this issue needs to be prioritized and appropriately addressed through education and support. INNOVATIVE PARTNERSHIPS AND COLLABORATIONS FOR INTEGRATING SERVICES In introducing the workshop session on partnerships and collaboration, moderator Peggy Maguire, president of the Cambia Health Foundation, noted that Cambia takes a holistic approach to serious illness care across its foundation, health plans, and strategic technology investments.
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. The integrated care team, she explained, includes a social worker, a nursing assistant, a home care aide, a nutritionist, and a registered nurse case manager, as well as a transportation coordinator.
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egrated Service Delivery and Team Mana 48 INTEGRATING HEALTH CARE AND SOCIAL SERVICES FIGURE 5 PACE Interdisciplinary Team. SOURCES: As presented by Gwendolyn Graddy-Dansby, July 19, 2018; image credited to the National PACE Association.
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The approach taken by Simmons's organization is to work with what she refers to as "a wide range of human beings, whether they are Promotores or community health workers, coaches, social workers, or community-based organizations that serve as the ears and eyes in the home" for the health care team, gathering data and information not typically shared in a medical setting or encounter. With proper training, noted 30 For more information, see https://www.picf.org (accessed September 21, 2018)
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Hartford Foundation, the SCAN Foundation, the Gordon and Betty Moore Foundation, and several others, is to develop consistent screening to target the need for evidence-based approaches for using community-based organizations and to build funding for these services to be included in order to support better health care outcomes.31 Simmons explained that Partners in Care and the other collaborating organizations are targeting the populations that need either short-term care management, help with care transitions, or long-term services and supports. Their goal is to reach those who need help, improve self-care and self-management, meet their community support needs, qualify people for available benefits and programs, improve medication adherence, avoid adverse drug effects, and educate and support caregivers.
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The intervention targets medication issues, Simmons explained, as they are so common, and if not properly addressed, typically lead to increased rates of hospital readmission.34 Simmons noted that a study that will be published soon found that of the high-risk individuals coming out of the hospital, 99 percent had medication-related problems that needed to be reported to their physicians, and would have increased the odds of r eadmission. This program, said immons, produced an average 34 percent S reduction in readmission rate versus baseline across 11 hospitals in three Southern California areas.35 Based on the success of CCTP, UCLA Health contracted with Partners to implement a second intervention called HomeMedsPlus, which includes HomeMeds as well as an in-home psychosocial, fall-risk, and functional assessment with 30 or more days of follow-through to address unmet 32 For more information, see https://innovation.cms.gov/initiatives/CCTP (accessed October 20, 2018)
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"Now is the time," she said, "to move this agenda forward." She noted positive movement such as the passage of the CHRONIC CARE Act and the availability of Medicare Advantage Special Needs Plans, which, for the first time, are offering "a subset benefit for high-risk people that opens the door to social determinants of health and self-management." She suggested that one approach might be for the National Academies to help lead an effort to define what would be "the next generation that would be eligible for the supplemental benefit." Simmons explained, "we want the right benefit that yields significant health changes" in a sustainable, economically responsible, and culturally and linguistically sensible manner and also accounts for elder abuse risk. "We can see a whole platform of evidence-based, self-management program resources built out across this country that medicine is not taking advantage of and is not yet partnering with," said Simmons.
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. He explained that traditional palliative care consists of three pillars: symptom management, care coordination, and setting goals of care.
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Whenever a male nurse would come into his hospital room at night, he explained, it would trigger those traumatic memories and drive him to leave the hospital. Disclosing this infor mation led to his further bonding with the care team, and before he died in supportive housing, he told the team that he used to feel like he was falling and now he was not.
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Mental health, addiction, lack of social support, food insecurity, housing issues, and health literacy are among the issues that "hit you in the face and jam you when you are trying to take care of these patients," said K ennedy. However, they are only the most visible confounding issues affecting patients such as Paul.
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In addition, the program has decreased hospitalizations and nursing home admissions.
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. Moreover, a study of Medicaid beneficiaries in Maryland found that the program reduced hospitalizations by such a significant amount that it was 38 For more information, see https://nursing.jhu.edu/faculty_research/research/projects/ capable/index.html (accessed September 12, 2018)
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Blending funding streams has been a challenge, particularly because housing and health care typically are funded through separate streams, but Szanton said the program has been fortunate to identify partners to address that problem. She added that she hopes to be working with the PACE program soon.
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Kennedy replied that all of the health systems in the Portland area contributed funds, as did a large Medicaid and special needs Medicare plan. Central City Concern, the city's largest housing and health care organization serving the homeless, also contributed by using various tax credits and other approaches to raise additional funds.
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"If those conversations occur, some of those high-cost hospitalizations could potentially be avoided," she explained, either by caring for the person at home or through a short stay in a nursing home. Cheryl Matheis from the Coalition to Transform Advanced Care commented that the panel described some of the amazing things that can be done when people who understand the financing streams of public programs, foundations, and insurers get creative in the ways they combine funds and functions, and actually save money.
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The organization is also focused on new populations that it can serve with its interdisciplinary care model beyond those who are 55 and older who are eligible for nursing home care. Amy Berman from The John A
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EXPLORING POTENTIAL POLICY CHALLENGES AND OPPORTUNITIES FOR INTEGRATING HEALTH CARE AND SOCIAL SERVICES NATIONWIDE The final workshop session focused on policy challenges and opportunities for integrating health care and social services nationwide. Session moderator Joanne Lynn noted that the services available today for caring for people with serious illness are inadequate, unplanned, unreliable, and likely to worsen.
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In reference to the PACE program, he noted that he has been involved with the program for 40 years and takes "particular pride in the fact that the legislation establishing PACE as a permanent Medicare benefit and permanent state plan option was enacted when I was administrator" of the Health Care Financing Administration (HCFA)
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"That has been a consistent pattern throughout the 50-year history of Medicaid, financing of long-term care services, and that is not an outcome we want," said Vladeck. At the same time, he believes that even if all of the effective programs were instituted widely, the savings would not make up for Medicare's impending fiscal gap.
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"We need funders, we need state funders, we need foundations, we need advocates to sort of get nerdy about budget policy and understand that we have to have pathways," she said. The final session panelist, Gail Wilensky, senior fellow at Project HOPE, took exception with Vladeck's comment that the only way to reduce spending is through provider payments, noting that in her opinion, "capitation is the only way to know exactly what will be spent at the end of the day, because you have all of the services covered for a person whereas if you are talking about provider rates you still have the challenge of volume intensity." She then turned to the issue of how to blend funding streams, which she 40 See https://www.acl.gov/about-acl/authorizing-statutes/older-americans-act (accessed September 14, 2018)
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When you have provided 40 hours a week of care to your mother, you ought not to be cut out of Social Security." She also raised the idea of enabling certain communities to try to create what she called the "Toyota revolution for serious illness care," referring to the Lean process improvement method championed by manufacturing companies such as Toyota and used by health care organizations to improve
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"I do not think Medicare can afford a long-term care benefit, but I would love it if when someone first begins to use their post-acute benefits that they receive intensive case management and a care plan right then" said Greenlee. During the question and answer session, Hillary Tsumba from the Primary Care Coalition and the Montgomery County (Maryland)
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Jennifer Brokaw, an emergency physician, asked how Medicare Advantage plans are able to integrate in-home support of services, based on the idea that they would save money on the total cost care, but that this approach cannot be applied elsewhere. Wilensky replied that she is a strong proponent of the new provisions that allow additional flexibility for Medicare Advantage plans in differentiating benefits for people with different medical conditions (Wilensky, 2018)
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As at the start of the workshop, she referred to the IOM's Dying in America report, and the committee's recommendation that "federal, state, and private insurance and health care delivery programs should integrate the financing of medical and social services to support the provision of quality care" for people with serious illness. Referring to the discussion in the workshop's final panel, she noted that the committee also emphasized that "to the extent that additional legislation is necessary to implement this recommendation, the administration should seek, and Congress should enact such legislation" (IOM, 2015)
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H Van Houtven.
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2018. Identifying the population with serious illness: The "denominator" challenge.
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2018. Changing structures and processes to support family caregivers of seriously ill patients.
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