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Proceedings of a Workshop
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From page 1...
... . Those living with serious illness can be found across the age spectrum and in a broad range of care settings, from pre-birth to geriatric care.
From page 2...
... . To better understand how the principles of palliative care can be integrated into the overall provision of care and services to those facing serious illness, the Roundtable on Quality Care for People with Serious Illness of the National Academies of Sciences, Engineering, and Medicine held the public workshop Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness.
From page 3...
... . Palliative care, she pointed out, recognizes that there are "many quality-of-life challenges from the point of diagnosis of a serious illness and throughout the course of that illness," whether or not it is cured, whether the individual lives with it for decades as a chronic condition, or whether it is progressive and leads to death.
From page 4...
... The third and fourth sessions highlighted a variety of promising innovations and successful models of providing communitybased palliative care in a range of settings. The final session discussed some of the policy options that would enable successful community-based palliative care models to scale and spread.
From page 5...
... •  he health care system needs to fundamentally change its T organizational and cultural thinking to reflect an understand ing that it has a responsibility to provide care to patients with serious illness wherever they are in their health care journey. (Pinderhughes)
From page 6...
... •  xpand use of telepalliative care using a Health Insurance Por E tability and Accountability Act secure platform for everything from virtual patient care visits to family caregiver support and advanced care planning. (Lustbader)
From page 7...
... •  ay attention to wording: Use the term serious illness care rather P than end-of-life care to allow patients to have the conversation with their providers. Think about serious illness care as an individual ized care plan that requires a menu of options.
From page 8...
... (Le) FRAMING THE CHALLENGES AND OPPORTUNITIES TO PROVIDE HIGH-QUALITY CARE TO PEOPLE WITH SERIOUS ILLNESS Meier opened the workshop with a brief overview of the current landscape of palliative care in the United States, explaining that such care is easily accessible in two settings: hospice and hospital.
From page 9...
... •  reate a mechanism through which Medicare Advantage plans, C or even fee-for-service plans, could appeal to the Centers for Medicare & Medicaid Services to fund something that does not necessarily fit into current reimbursement plans, but would have a positive effect on the beneficiary's health.
From page 10...
... . According to Meier, for those in hospice, "outcomes consistently show better quality of life, not only for the person with serious illness, but also for their family, and significantly lower Medicare spending if the length of stay is less than 6 months." Meier noted that although the number of hospices has nearly doubled from 2,255 in 2000 to nearly 4,200 in 2015 (MedPAC, 2017)
From page 11...
... Meier pointed out that data about access to community-based care for people with serious illness is not available. She asked, "How do we get to a point where we say we have the same access to community-based serious illness care models as we do hospital palliative care or hospice?
From page 12...
... . TABLE 1  Examples of Community-Based Palliative Care Models Program/Model Name Summary of Key Features PANDA Palliative Care Pediatric palliative care for the preborn to young adults; Team programs aim to decrease hospital admissions, decrease Children's National ED visits, enable seriously ill children to remain at home Health System, to the extent possible.
From page 13...
... Outcomes of home-based palliative care program include per person per month savings, fewer hospital admissions, and an increased percentage of patients dying at home. MedStar Total Elder Home-based primary care teams implement palliative Care-Medicare care principles such as treatment of symptoms and Independence at Home suffering, 24/7 access to care, establishing clear goals of (IAH)
From page 14...
... CareMore CareMore provides coordinated care through care teams Based in Downey, CA, and neighborhood care centers; focuses on three areas: with operations in nine prevention of disease through sub-acute services and states fitness centers; chronic care through disease management programs; and acute care through case managers and "extensivists," internists who see the patient in the hospital and follow them through post-discharge to ensure continuity of care. Clinical results include reduced hospital admissions, fewer hospital bed days, and fewer CHF and COPD admissions.
From page 15...
... " The Garrett Family's Experience with Palliative Care Building on the roundtable's first workshop,6 a number of speakers highlighted the importance of hearing directly from patients and caregivers about the transformative impact of palliative care on how they live their lives in the face of serious illness. In this workshop, that critical perspective was provided by Vicki and David Garrett.
From page 16...
... Vicki recounted how her journey living with serious illness began on a rainy autumn day when she and a colleague were walking to a meeting two blocks from the hospital where she worked. As Vicki described it, she pointed out: "I was healthy.
From page 17...
... He recalled "from the moment that Colleen presented this wonderful notion that we could choose to live, it made a huge difference for both of us." In concluding his remarks, David thanked all members of the team that care for Vicki: "We are eternally grateful to Colleen, to the oncologist, and to the palliative care people in Michigan"
From page 18...
... As a result of those discussions, Vicki decided not to have surgery because as Tallen pointed out, "she did not want to live oxygen-dependent in her home." Tallen also spoke of the strong connection between Vicki's palliative care teams in Florida and Michigan. Recently, for example, Vicki developed pneumonia, and a quick response from the team in Florida in conjunction with her oncologist in Michigan kept her from being hospitalized.
From page 19...
... Some may argue that creating such a system would be expensive, but in fact, noted Twaddle, the money spent today on wasted and duplicated services would more than cover the cost of establishing and operating a system that coordinates care to the benefit of patients with serious illness. Twaddle recalled that when she started her career as a primary care internist, she saw her patients 7 Allopathic medicine refers to a system in which medical doctors and other health care professionals (e.g., nurses, pharmacists, and therapists)
From page 20...
... As is typical of individuals like Eleanor, she makes repeated visits to the emergency department, has frequent hospitalizations, and has not seen her primary care physician for months. Since her primary care physician and the hospital she goes to are not in the same health system, he has no idea of what she is going through.
From page 21...
... What the stories illustrate, said Pinderhughes, is the need for the health care system to fundamentally change its organizational and cultural thinking to reflect an understanding that it has a responsibility to provide care to patients with serious illness wherever they are in their health care journey. Imagine, she said, if the individuals and families in the two stories she and Twaddle recounted had been able to benefit from palliative care in the way the Garretts had.
From page 22...
... . Indeed, she proposed that a great quality metric for those with serious illness could be days spent at home.
From page 23...
... "Pain and symptom management is part of that, but it is much broader than just that because symptoms are not just physical." She reminded workshop participants that the other key elements of quality care include 24/7 access to care, support for family and caregivers, and thinking about who is at risk in the future by targeting highest risk people. Community-Based Palliative Care: Health System Perspective Stacie Pinderhughes, chair of the division of palliative medicine at Banner Health, also began her presentation by thanking the Garretts, remarking that "it really helps the clinicians and the individuals in the field 9 See http://www.nationalacademies.org/hmd/Activities/HealthServices/QualityCarefor SeriousIllnessRoundtable/2016-DEC-15.aspx (accessed August 3, 2017)
From page 24...
... Pinderhughes explained that Banner Health is trying to approach the transition from volume to value in a thoughtful, measured process, and like many health systems, is trying to figure out how the best way to do this from the perspective of population health. Banner Health is a large and growing health system of 28 acute care and critical access hospitals across six states, and recently purchased 23 urgent care centers.
From page 25...
... Meier added that the states, Medicaid, and insurance companies are all part of the drive toward value. "Value is not going away," concluded Meier, "because the rest of the health system is committed to it." PALLIATIVE CARE PRINCIPLES ACROSS THE AGE SPECTRUM In introducing the second session's panel speakers, Brenda Clarkson, executive director of the Virginia Association for Hospice and Palliative Care, noted that as a hospice nurse since the 1980s, she has witnessed the
From page 26...
... Clarkson referred to Diane Meier's earlier comment that palliative care's whole-person approach needs to be available to anyone regardless of age, state, disease, or prognosis. That does not mean, however, that palliative care programs for children and their families will be the same as those for a 40-year-old with cancer or an 80-year-old with chronic kidney disease and congestive heart failure.
From page 27...
... . As is the case with adults, children with serious illness make more visits to the ED and hospital, and their hospitalizations tend to be lengthy.
From page 28...
... It is a family decision, and it is different for every child." Developmental issues are a concern when caring for seriously ill children, particularly when there are other children in the family who have different understandings, depending on their ages, of what it means to have a serious illness and face death. "How do we, as a team, an interdisciplinary team with our social work colleagues, our child life specialists, our nurses, our physicians, our families, and our hospice teams that take care of these kids -- how do we come together to really address the developmental issues of kids?
From page 29...
... "It is a family experience." For many years, said Deborah Lafond, a nurse practitioner with the PANDA Palliative Care Team in the Division of Hospitalist Medicine at the Children's National Health System in Washington, DC, families with seriously ill or dying children were forced to make a choice between potentially curative or life-prolonging treatments and improving quality of life through palliative care. "We asked them to make an almost impossible choice, a choice that can be perceived as being life or death," explained Lafond.
From page 30...
... In other words, she explained, hospice caregivers were unsure how they would deal with the emotional challenges of working with seriously ill and dying children when they went into the hospice field to take care of elderly adults who were dying. To address those issues, Perko and her team created the Bridges Palliative Care program, which includes an interdisciplinary educational program, webinars, telehealth, support calls for nurses and other palliative and hospice care staff, and regular calls with families, as well as an annual conference.
From page 31...
... "She does not remember the bad days." In closing, Lafond noted that both the pediatric palliative care programs she and Perko described have demonstrated the ability to provide seamless coordinated care and education to increase advance care planning conversations. Moreover, she pointed out that they have helped parents and families to have access to better choices in terms of the type and setting of care provided to their children.
From page 32...
... Medicare Care Choices Model Referring back to Meier's earlier presentation, Laura Patel, chief medical officer at Transitions LifeCare, a nonprofit, community-based hospice and palliative care organization in Raleigh, North Carolina, pointed out that while the use of hospice care in the United States has increased overall, with fewer individuals dying in hospitals (Teno et al., 2013) , the median length of stay in hospice is still only 17.4 days.
From page 33...
... Individuals in Medicare Advantage and other managed care programs or who have received hospice are not eligible to participate. The model, Patel explained, is based on the interdisciplinary framework of hospice and focuses on care coordination, shared decision making, and symptom management.
From page 34...
... Nurses in Patel's organization's Care Choices Program, for example, help triage palliative care patients, and the medical director, social workers, and chaplains serve dual roles as well. The nurses in this program are not hospice nurses, though many were hospice nurses or hospice admission nurses at some point in their careers.
From page 35...
... Nevertheless, the majority of patients who do receive care from this program do die on hospice, which Patel said speaks to "the impact of this high-touch, interdisciplinary approach and its ability to develop trust and rapport" with people with serious illness and their families. As with any pilot program, there is room for improvement, explained Patel.
From page 36...
... In closing, Patel pointed out that "Ultimately, that is what this program is about: meeting the patient where they are at, wherever that is, providing whatever support we can for whatever time we can for these patients and families who have a great need." Adult Palliative Care in a Value-Based Payment Model Dana Lustbader, chief of the department of palliative care at ProHEALTH, an Optum Company, described how she became interested in exploring how home-based palliative care could better support those with serious illness after working for 20 years as a hospital-based critical care physician. Her organization is a 900-physician multispecialty group that serves more than 1 million people in New York City metropolitan area, with 100,000 patients in a shared-savings arrangement.
From page 37...
... However, with home-based palliative care, which provided 24/7 telephonic support, caregiver support and coordinated with Meals on Wheels and a friendly visitor program, Frank's condition stabilized and he had no ED visits or hospitalizations in 9 months. The space that the ProHEALTH Care program addresses is what Lustbader called pre-pre-hospice, a period spanning approximately 6 to 18 months before a person would be eligible for hospice, and the target population includes the so-called super users -- those individuals with multiple chronic conditions that typically send them to the hospital.
From page 38...
... Each palliative care team has three registered nurses, half to threequarters of a palliative care physician or geriatric physician, and half of a social worker to serve approximately 250 patients. Patients receive a minimum of one visit at home per month, with more frequent visits determined by each patient's specific needs.
From page 39...
... "It drives churn and it rewards excessive care," she said. "Innovative models of payment are really critical and would allow us to deliver the kind of care people need, which is that 24/7 care and primarily with a focus on care at home." She noted that CAPC, which has a registry of inpatient palliative care programs and will be starting one for community and home-based palliative care, will become a good source of information on the benefits of these programs.13 The discussion following the speakers' presentations began with a question from workshop participant Paige Bingham with Allina Health in Minneapolis.
From page 40...
... Lafond noted that the patient and the family are best placed to tell their stories. "In pediatrics, in particular, having siblings talk about" the impact of serious illness for their family and "how palliative care helped them, tells a powerful story that we (as providers)
From page 41...
... PROMISING INNOVATIONS IN PROVIDING HIGH QUALITY, COMPREHENSIVE PALLIATIVE CARE The workshop's first two afternoon sessions were devoted to learning about innovative, real-world applications of palliative care principles to provide person-centered care for individuals with serious illness. Speakers discussed programs that provide care in the home, care for the Medicare/ Medicaid dual-eligible population, and caring for patients in remote, underserved areas.
From page 42...
... Grant rushed down to the emergency department, but the woman had already been admitted and was in the cardiac inter mediary care unit. When Grant arrived there, the young resident there told her she could talk to the woman, but she was about to be moved to the oncology unit because they needed the bed in the cardiac unit.
From page 43...
... This approach to care, De Jonge explained, encompasses major principles of palliative care outlined by Meier in her introductory remarks, including treating symptoms and suffering; establishing clear goals of care; engaging in close communications among the care team, patient, and caregivers; providing psychosocial support; and coordinating all aspects of care. "This is what we would want for all of our loved ones who have serious illness, and the home-based primary care approach tries to meet all of these principles using a primary care house call team that is very skilled in managing all of the symptoms and suffering of serious illness," said De Jonge.
From page 44...
... In De Jonge's opinion, home-based primary care is scalable when achieving quality metrics and savings. Caring for these individuals is still expensive, De Jonge acknowledged, but savings are possible while still providing high-quality care for this population of individuals with serious illness.
From page 45...
... In Fratkin's opinion, this equal treatment is important to the sustainability, stability, and growth of his organization. ResolutionCare's interdisciplinary care team has specially trained palliative care physicians, registered nurses, social workers, chaplains, and community health workers, and the team has a flat organizational structure.
From page 46...
... Citing pilot data from Partnership Health Plan, Fratkin noted that 95 percent of the participants surveyed believed they received the best possible care from their palliative care team and would recommend the team to others. The cost of care fell by 33 to 55 percent for pilot participants during the 3 months after enrolling in the program and they experienced 40
From page 47...
... Serving the Dual-Eligible Population: Commonwealth Care Alliance John Loughnane, Commonwealth Care Alliance's (CCA's) chief of innovation and medical director of its Life Choices Palliative Care Program, described his organization as a "unique entity" that was formed in 2004 and was one of the "first in the country to use risk-adjusted premiums to create both a payer and care delivery model." He shared CCA's approach to taking on 100 percent of the financial risk of caring for "the sickest, most costly, most complicated patients" through two care models.
From page 48...
... In fact, community health workers and others go out and find people who are having access problems. Before describing the palliative care program Loughnane developed, he noted the importance for sustainability of demonstrating that programs such as this have a positive return on investment and a good profit-to-loss ratio.
From page 49...
... Concluding his presentation, Loughnane provided some provocative proposals for the health care system. The first is that health care reform should focus on accelerating the adoption of new models of care, based on today's technologies, which would reduce the significant costs associated with serious illness and end-of-life care.
From page 50...
... If we are able to generate savings, then we share that with the health plans," Le explained. The complexivist model, noted Le, provides high-touch, high-intensive care by the interdisciplinary care team.
From page 51...
... The behavioral health team, like the complexivist care team, is available all day, every day, and it works with Landmark Health's social workers and other community resources to address various social determinants of health. Le noted that the program's chief behavioral health officer put together a behavioral health assessment tool that is used to identify patients who would benefit from such health services.
From page 52...
... Landmark Health also has local subject matter experts trained in end-of-life care and other situations that may arise in the most challenging patients. In general, the complexivist team sees every patient and the behavioral health care team attends to those who have more serious problems.
From page 53...
... In closing, Le emphasized the great need for home-based care for people facing serious illness. He shared that for Landmark, "it is always going to be a work in progress."
From page 54...
... De Jonge said he believes the home care "mobile" approach "cuts the Gordian knot of access for this high-risk population" as his program's care teams are going out to see patients across Washington, DC, and surrounding areas. Loughnane responded that CCA's One Care program was expressly designed to address access issues and partner with community health workers to locate people in need who face difficulties in accessing care.
From page 55...
... Before subjecting that patient to the procedure, the care team members will review that recommendation together during one of its twice-weekly care planning meetings and decide if it is appropriate for that particular patient. Wensel explained that the team meetings include not only the clinical members and chaplains, but also home health aides, transportation aides, community caseworkers, caregivers, and family members involved in the care of the specific patients who are the subjects of that day's meeting.
From page 56...
... Wensel's organization is collaborating with medical and nursing schools to bring students into its PACE program and its separate hospice, palliative care, and home health programs. This "grow your own" approach aims to introduce students to these interdisciplinary, collaborative forms of care early in their education.
From page 57...
... Palliative care is an integral part of the PACE model, Wensel pointed out, and every team member is cross-trained in palliative medicine and endof-life care. The care team aggressively treats any symptoms that affect quality of life, in keeping with palliative care principles.
From page 58...
... First, Zinberg recognized the fundamental importance of preventing people with chronic disease from progressing, and that doing so requires a team of health professionals who can help patients manage their own health and disease. To enable this type of health and disease management approach, CareMore created medical home cooperatives, or care centers, which include dieticians, nurse practitioners trained to manage chronic disease, podiatrists, other health care professionals, and even a fitness center.
From page 59...
... This approach has had a significant impact on hospital admissions and stays. According to Jain, CareMore members in 2016 had 37 percent fewer hospital bed days, 60 percent fewer inpatient days associated with end-stage renal disease, and 33 percent fewer congestive heart failure readmissions compared to the Medicare average.
From page 60...
... She explained that Tandem365 was formed in 2013, when five providers in Michigan -- four faith-based continuing care retirement communities and an ambulance service -- came together to form Tandem365, an independent collaborative venture assisting hospitals, doctors, family members, and individuals in need of health care services not traditionally provided as part of health system benefits. The four retirement community partners, explained Toland, were formerly competitors who operate independent living and assisted living facilities, nursing homes, and skilled nursing rehabilitation facilities, and offer certified home health and private-duty attendants.
From page 61...
... After she died, he continued living in the same house, but as he aged he developed serious illness, fell often, and was a frequent user of the emergency department. The trustee his mother had appointed to watch over Larry did not have his best interests at heart, and the first thing Tandem365's social work department did was appoint a pro bono attorney to get Larry a new trustee, one who is involved in his life and helps him access the services he needs.
From page 62...
... Tandem365 is accountable for a number of utilization and quality measures, including emergency department visits, hospitalizations, days in SNFs, intensive care unit admissions, and care transitions. Toland noted that one client is asking her organization to improve its scores on the Healthcare Effectiveness Data and Information Set (HEDIS)
From page 63...
... Jain emphasized that although the workshop focused on the various innovative models of care delivery, "It's about the people. The model is really only as good as the people who operate within the model." Jain added that "the recruitment of passionate, mission-driven, highly capable, clinically competent, intrinsically motivated, excited clinicians is the secret sauce." Workshop participant Katrina Scott of the Association of Professional Chaplains asked the speakers about the role of outreach to faith communities in their holistic care models.
From page 64...
... Jain noted that the "marriage of payer and provider" is a theme that was raised throughout the day and might provide the answer to "unleashing the power of common sense to do the things you need to do to keep your patients out of the hospital and keep them well." Jain noted that there is often limited knowledge about what is happening across health and non-health sectors and "that is a really important gap we can all help" to address. POTENTIONAL POLICY STEPS TO SUPPORT HIGH QUALITY CARE FOR PEOPLE WITH SERIOUS ILLNESS Over the course of the workshop, a number of leaders of innovative programs that incorporate the principles of palliative care into the care of individuals with serious illness described the opportunities and challenges to spreading and scaling their programs.
From page 65...
... , which included BPC long-term–care working group committee members Senators Frist and Daschle,17 in calling policy makers' attention to the fact that high-need patients account for a disproportionate share of health care costs. Specifically, Hoagland pointed out that of total personal health care expenditures in 2014, the top 1 percent of health care spenders accounted for 22.8 percent of all health care spending, and the top 5 percent accounted for 50.4 percent, according to the Agency for Healthcare Research and Quality's Medical Expenditure Panel Survey18 (see Figure 5)
From page 66...
... "I think it should be clear that if policy makers are concerned about cost, which they tend to be, they must focus their attention on those who contribute the most to those costs," said Hoagland. With that as background, Hoagland explained that BPC is focused on two distinct high-need, high-cost populations: Medicare/Medicaid dualeligible individuals and the Medicare-only beneficiaries with three or more chronic conditions and functional/cognitive impairment.
From page 67...
... "If we are to be successful in integrating palliative care into services for the seriously ill and vice versa, we need to increase the availability of coordinated care in the system or it will never work," he said. With regard to the high-need, high-cost Medicare-only population, Hoagland and his colleagues first identified a number of regulatory and payment policy barriers to providing integrated care for this population, whether through Medicare Advantage plans, accountable care organizations, or patient-centered medical homes (Bipartisan Policy Center, 2017a)
From page 68...
... This flexibility would allow Medicare Advantage plans and Medicare providers to furnish or finance non-Medicare–covered supports that are part of person-centered care plans for Medicare-only beneficiaries with three or more chronic conditions and functional or cognitive impairment. As an illustrative example, the BPC team analyzed the cost implications of providing four potential supplemental benefits: in-home meal deliveries, non-emergent medical transportation, minor home modifications, and targeted case management.
From page 69...
... in Congress, progress is being made, if so slightly, toward focusing on improving the quality and availability of medical and social services for patients and their families to enhance the quality of life for patients with serious illness." In his opinion, those advances will not only benefit those individuals and their families through the end of their lives, but also "benefit the public purse." Additional Opportunities for Policy Changes Throughout the day's presentations, a number of workshop speakers offered policy recommendations of their own. In their presentations, both De Jonge and Le voiced support for Senate Bill 464,19 the Independence at Home Act, which was introduced at the end of February 2017 and was referred to the Senate Finance Committee.
From page 70...
... 70 TABLE 5  Common Features Between BPC Recommendations and the Chronic Care Act of 2017 CHRONIC BPC April 2017 BPC September 2016 Care Act Recommendations Recommendations Allowing MA plans to target supplemental benefits to chronically ill enrollees ü ü Waiving the restriction that limits MA supplemental benefits to "primarily ü ü health-related" services Clarifying that certain ACOs and medical homes can provide non-Medicare- ü covered social support services for free Improving the accuracy of the Risk Adjustment Model for MA plans and ü ACOs Establishing new quality measures to assess the integration of medical services ü with non-medical social supports Making the CMS Medicare–Medicaid coordination office the focal point for ü ü dual-eligible issues Permanently authorizing D-SNPs in conjunction with new requirements for ü D-SNPs to integrate certain Medicare/Medicaid benefits ü Integrating Medicare/Medicaid grievance and appeals processes within ü ü D-SNPs Revising and improving the structure of the financial alignment initiative for ü dual-eligible beneficiaries Developing a new three-way contract model for integrated care for dual- ü eligible individuals NOTE: ACO = accountable care organization; CMS = Centers for Medicare & Medicaid Services; D-SNP = Dual-Eligible Special Needs Plan; MA = Medicare Advantage. SOURCE: As presented by William Hoagland, April 27, 2017.
From page 71...
... Fratkin offered two policy recommendations that he believes would increase the application of palliative care principles nationwide. The first is to create a federal version of California Senate Bill 1004,20 which would require CMS to establish standards and provide technical assistance for Medicare managed care plans to ensure the delivery of palliative care services.
From page 72...
... Jain had a number of suggestions for moving policies forward. The first suggestion called on foundations and other funders to organize a "dignitypalooza," a large-scale national gathering at which these issues are raised and discussed and that would create a social movement to support better care for people with serious illness.
From page 73...
... Washington, DC: Bipartisan Policy Center. Bipartisan Policy Center.
From page 74...
... 2016. Cost analysis and policy implications of a pediatric palliative care program.
From page 75...
... 2017. The impact of a home-based palliative care program in an accountable care organization.


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