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Proceedings of a Workshop
Pages 1-64

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From page 1...
... In many communities, particularly urban and rural underserved communities, primary care clinicians are the main workforce caring for people with serious illness, which underscores the need to integrate high quality serious illness care into primary care delivery. 1 The planning committee's role was limited to planning the workshop, and the Proceedings of a Workshop was prepared by the workshop rapporteurs as a factual summary of what occurred at the workshop.
From page 2...
... . Developing and enhancing serious illness care delivery by primary care clinicians and practices will require targeted efforts in areas such as education and training of mid-career health professionals, research, credentialing, accreditation, regulation, and payment policy (IOM, 2015)
From page 3...
... He went on to explain that one of the goals of the workshop was to elevate a conversation about "building a bridge between primary care and serious illness care in order to provide the best care possible for patients and caregivers throughout their journey with serious illness." 3 For additional information, see https://www.nationalacademies.org/event/06-10-2021/ integrating-serious-illness-care-into-primary-care-delivery-a-workshop-first-webinar (accessed November 1, 2021) and https://www.nationalacademies.org/event/10-26-2020/integratingserious-illness-care-into-primary-care-delivery-a-workshop#­sectionEventMaterials (accessed November 1, 2021)
From page 4...
... (Patel) • Standardize needs navigation as part of clinical practice guide lines in order to engage patients from underserved communities and educate patients on the cost of having a serious illness.
From page 5...
... (Edes) Addressing the Social Determinants of Health • Elevate social workers to leadership positions to help the inter­disciplinary team develop competencies and take actions needed to eliminate disparities and break down the structural barriers that prevent many people of color from accessing pallia tive and hospice care.
From page 6...
... • Within an emergency department, identify seniors at risk and refer them to primary care social workers.
From page 7...
... , as an example of how principles of serious illness care can be integrated into primary care delivery. Stewart explained that she had many conversations with Someji during their 12-year relationship about what they would do when it came time to decide on end-of-life care.
From page 8...
... EXPLORING THE SHARED PRINCIPLES OF SERIOUS ILLNESS CARE AND PRIMARY CARE Providing Compassionate, Patient-Centered Care for Individuals with Serious Illness The first session opened with Shirley Roberson, fellow and member of the board of directors of the Coalition to Transform Advanced Care, who recounted her frustrating and frightening experience when diagnosed with Stage 4 breast cancer. Roberson offered her own experience as an example of how some members of the health care profession have yet to reach the goal of providing compassionate, patient-centered care for individuals with serious illness.
From page 9...
... , explained that for the past 25 years PAF has delivered effective, compassionate case management primarily to resource-limited people and their caregivers who are coping with complex chronic conditions. PAF's efforts to connect people to safety net programs and other types of assistance are designed to dismantle certain obstacles that they face in gaining access to equitable quality of care.
From page 10...
... pandemic has drawn much needed public attention to these inequities while intensifying the need for this type of work at the level of individual communities. Bradshaw emphasized that many people with serious illness have unmet financial and social needs that impact both patient and caregiver well-being.
From page 11...
... not meeting their needs, as it often forces them to sacrifice basic necessities to pay for recommended treatments. Bradshaw noted that the financial cost of a serious illness is typically unknown to patients or overlooked by health care providers.
From page 12...
... Clinical Practice Guidelines for Quality Palliative Care Martha Twaddle, Waud Family Medical Director for palliative medicine and supportive care at Northwestern's North Region and the Northwestern Feinberg School of Medicine opened with reference to the clinical practice guidelines developed by the National Consensus Project for Quality Palliative Care to define and improve palliative care delivery and detail its essential elements. Twaddle explained that the guidelines achieve the following: • Outline the essential elements of quality palliative care, • Reflect the multifaceted needs of people and their caregivers as they navigate serious illness and inform decision making, • Define the structures and process of care and set expectations, • Provide the framework that enables groups and institutions to set standards and measurements that create a foundation for accountability, and • Inform policy and payment.
From page 13...
... Importantly, this conception of serious illness is not about prognosis, she noted, but rather about the burden of the illness itself and its effects on the patient and caregiver. The guidelines emphasize that palliative care is, by definition, interdisciplinary.
From page 14...
... These examples, said Twaddle, are meant to be inspirational -- and to provide a reminder that it is impossible to have care teams of professionals with every expertise needed by patients with serious illness. Twaddle concluded by noting that clinicians need to think broadly about other care team members.
From page 15...
... Holly Distinguished Chair, professor and chair of family and community medicine at the Joe R and Teresa Lozano Long School of Medicine at the University of Texas Health San Antonio, opened by noting that primary care and palliative care clinicians share a focus on a biopsychosocial model8 of clinical practice.
From page 16...
... . Reiterating that palliative care physicians alone cannot meet the needs of everyone who could benefit, Jaén noted how important it is to activate, affirm, and support primary care's participation in serious illness care.
From page 17...
... 3. Workforce -- train primary care teams where people live and work.
From page 18...
... Bradshaw commented that the medical care that people with serious illness receive through primary and palliative care is extremely important. She stressed the importance of acknowledging the impact of serious illness on a person's identity and recognizing their nonmedical needs.
From page 19...
... Regarding Roberson's comment about physicians not having enough time to be responsive and listen to patients, Twaddle said it is important for primary care to push back and better manage its schedules to reflect the time demands that come with properly treating patients with serious illness. In Stewart's opinion, the key will be restructuring primary care practices to better reflect the interdisciplinary team model, which will depend on
From page 20...
... Stewart added that the AAFP has resources available on hospice and palliative medicine. THE ROLE OF INTERDISCIPLINARY TEAMS IN CARING FOR PEOPLE WITH SERIOUS ILLNESS IN PRIMARY CARE SETTINGS An Innovative Approach to Caring for High-Risk Patients Marianne Logan Fingerhood, track coordinator for the adult/­ gerontological nurse practitioner program, program director for the Support­ing Nursing Advanced Practice Transitions (SNAPT)
From page 21...
... The SHARP program teams coordinates care with a variety of subspecialists including: • A home care group whose staff assists with care coordination, particularly after hospital discharge; • A physical therapy group that provides outpatient care, including in the home; • An occupation therapist that works with people and their families to help them attain the ability to care for themselves in their own homes; and • An internal palliative care and hospice group. Fingerhood explained that the SHARP program primarily identifies patients that would benefit from extra care through reports of multiple hospitalizations over a 6-month period, frequent office visits, and/or Healthcare Effectiveness Data and Information Set (HEDIS)
From page 22...
... Bullock pointed out that professionally trained social workers focus on the comprehensive factors that affect an individual's health and wellness. For social workers, serious illness care includes treatment planning, coordination of care, administration of services, and a host of other skills 12 Additional information is available at https://www.socialworkers.org/About/Ethics/ Code-of-Ethics/Code-of-Ethics-English.
From page 23...
... In fact, she had a similar experience when her mother was diagnosed with metastatic lung cancer and entered a system of care that was not aligned with her values, resulting in care that was not goal concordant. Bullock stressed that social workers can be at the core of serious illness care by providing services either at hospice centers or in the person's home.
From page 24...
... As team members, social workers are equipped to help you create opportunities and access to address greater health equity and serious illness care," Bullock concluded. Three Examples of Integrated Care Gregg VandeKieft, medical director of the palliative practice group at the Providence Institute for Human Caring and a palliative physician and clinical ethicist with Providence St.
From page 25...
... These site visits, explained VandeKieft, are intended to build relationships in the community and educate both clinicians and community members about serious illness care. They include an in-depth assessment of community assets and a gap analysis to determine the resources needed to build bridges between palliative care, primary care, and the community.
From page 26...
... VandeKieft ended with a description of the Providence Medical Group's Oregon Region initiative to enhance primary palliative care skills 17 For more information, see https://hsc.unm.edu/echo/about-us (accessed November 3, 2021)
From page 27...
... In closing, VandeKieft summarized that each of the three projects has a shared focus to engage and train members of the interdisciplinary team and a shared commitment to accomplish more in the primary care setting before having to turn to specialty palliative care. Advance Care Planning Shared Decision-Making Tools Danetta Sloan, assistant scientist at the Johns Hopkins Bloomberg School of Public Health, opened by noting that social workers in hospice are the team members who most often have conversations with patients and families about advance care planning (ACP)
From page 28...
... 4. What educational resources are available for non-palliative care clinicians about palliative care in ambulatory settings?
From page 29...
... Comprehensive and equitable care for all, from first contact to end of life; 4. Team-based, collaborative, and inclusive of social workers, nurses, and clergy; 21 For more information, see https://www.pcpcc.org (accessed August 17, 2021)
From page 30...
... Phillips explained that applying the model to palliative care would require a team with PCP, an advanced practice nurse or physician assistant with expertise in end-of-life care, a population health manager to track patients, and a medical assistant to help identify symptoms and screen patients for entry into what might be a registry for following patients. Phillips noted a variety of ways to identify patients with serious illness.
From page 31...
... ­Phillips shared that he typically works with different hospices, which requires him to simultaneously care for a patient at the end of life and create referral guidelines for palliative care specialists. In closing, Phillips pointed out that payment policy reform is needed to create a way to adequately pay for care of patients with serious illness, preferably using capitation.
From page 32...
... That issue, she said, contributes to the lack of available social work services on teams, which then affects care. The social work profession, she added, is working
From page 33...
... He explained that when his clinic first opened, it had foundation funding for a chaplain in the clinic setting, but when the grant ran out he could not secure additional funding. The chaplain now talks to the clinic team virtually and works with the embedded social worker.
From page 34...
... When asked about the role of mental and behavioral health in serious illness care, Bullock said that many patients who are receiving care for a physical condition will have a psychosocial or behavioral health issue such as anxiety or depression. Social workers, she noted, are trained to assess whether a given patient living with serious illness needs behavioral health care.
From page 35...
... "I am having to coordinate, manage, and be the expert on my own care, which I do not mind, but at the same time, I do not necessarily know who to reach out to even coming from the perspective of being in the health care system for well over a decade professionally." He added that the majority of people with serious illness face this same problem. Olex shared that he often reaches out to a friend or colleague in the advocacy community for referrals.
From page 36...
... POLICY MECHANISMS TO SUPPORT PERSON-CENTERED CARE FOR PEOPLE WITH SERIOUS ILLNESS IN PRIMARY CARE SETTINGS Integrating Serious Illness Care into Primary Care Delivery: Focus on Quality Arif Kamal, associate professor of medicine and population health sciences at the Duke University School of Medicine, began by reminding attendees that health care and society are both at an inflection point. Kamal said,
From page 37...
... Successfully making that transition, however, will require focusing on three critical areas: championing a workforce, developing quality measures in gap areas, and engaging and empowering patients and caregivers. While palliative care is considered a medical specialty, the bottom line, said Kamal, is that the 7,000 or so specialists in the United States, along with countless nurses, social workers, chaplains, pharmacists, and other team members, cannot possibly meet the needs of all those with serious illness (Kamal et al., 2019)
From page 38...
... As Twaddle explained, these guidelines are organized around eight domains of care that are relevant for any patient with serious illness and their caregivers, not only those receiving palliative care. Kamal acknowledged the widespread support these guidelines have received from the serious illness community and noted that the guidelines influenced the development of a measure ment framework for palliative care by the National Quality Forum (NQF)
From page 39...
... ing that financial toxicity24 is a significant component of low quality of life for patients with serious illness. Patients with advanced cancer, for example, will often drain their entire savings or declare bankruptcy.
From page 40...
... Kamal concluded by emphasizing the overarching importance of engaging people and family members in serious illness care. He also called attention to innovative approaches to fill current gaps in quality measurements.
From page 41...
... Bassano explained that participants can also select a "hybrid" option to simultaneously participate in both the primary care and high-needs population options. She added that the goals are to reduce Medicare spending by preventing avoidable hospital readmissions and to improve quality of and access to care for all Medicare beneficiaries, particularly those with complex chronic conditions and serious illness.
From page 42...
... , provided an update on legislative action related to serious illness care. Thompson explained that Senator Rosen is founder and cochair of the Senate's bipartisan Comprehensive Care Caucus, which focuses on palliative care, care coordination, and support for caregivers.
From page 43...
... Thompson noted that Senator Rosen led a successful bipartisan effort to recognize November as National Hospice and Palliative Care Month. The accompanying resolution, which passed by unanimous consent, referred to palliative care as complementary to curative treatments and emphasized the benefits of integrating it early into the treatment plans for patients with serious illness or injury.
From page 44...
... Barde remarked that such an investment should provide increased time for physicians to engage in shared decision making with their patients, incorporate community-integrated health services, and integrate an improved model of palliative care into care delivery. Referencing the triple aim and quadruple aim31 frameworks that are helping to drive health care system reform, Barde explained that his organization's philosophy is built on the quintuple aim recognizing the importance of increasing health equity and the provider experience.
From page 45...
... Blue Shield of California is also adjusting payments based on service intensity and providing additional revenue opportunities tied to quality as defined by HEDIS measures, resource use measures, and member satisfaction scores. Bower discussed Blue Shield of California's view of palliative care as a continuum -- one that starts early in a patient's experience with serious illness.
From page 46...
... She added that inpatient visits have fallen from 1,255 per thousand members to 1,069 and emergency department visits went from 1,034 per 1,000 members to 851. Bower noted that most of the cost savings support the payments for the program's providers and its administrative costs and internal surveys show that the majority of members are satisfied or very satisfied with the program; most common negative comments are about things that are not included in the palliative care package, such as a home health aide.
From page 47...
... In closing, Bower observed that as health care systems move away from paying for volume to paying for value, integration of palliative care into the care delivery model will be essential. Discussion Rodgers opened the discussion session by asking Olex to comment on the things about the health care system, teams, and interactions that he would change to make his experience more patient-centered and responsive to his needs.
From page 48...
... Rodgers then asked Kamal for his ideas on how to ensure high-quality serious illness care regardless of how providers are paid. Kamal endorsed the idea of the quintuple aim and its need for a broad scale patient-reported outcome performance measure that is generated immediately.
From page 49...
... To conclude the session, Rodgers asked the speakers to identify the main priorities to ensure access to high-quality serious illness care. Bower and Barde said a key priority is to expand the acceptance of palliative care beyond the majority white population by building trust among minority and vulnerable populations.
From page 50...
... He wondered, given privacy and regulatory concerns, if it would be possible to bring more patients into the system as peer advisors. PROMISING INTEGRATED CARE MODELS Serious Illness Conversations in Federally Qualified Health Centers The workshop's final session began with a presentation from Deborah Swiderski, associate professor of medicine and family and social medicine at the Albert Einstein College of Medicine and a primary care internist at the Montefiore Medical Center, on efforts to integrate serious illness care into two FQHCs.
From page 51...
... "I met with executive directors, medical directors, nursing leadership, and site personnel, social workers, and primary care providers," explained Swiderski. "I made short presentations at team meetings, I wrangled a family medicine grand rounds, and I used these not just to present what the project was, but as opportunities for informal needs assessment, which is crucial." Most importantly, Swiderski and her team made sure to schedule training sessions at already scheduled meeting times, so that there was no additional time commitment required from the FQHCs already overburdened with primary care providers.
From page 52...
... Serious illness conversations help to improve the way we see our patients." The ChenMed Model of Care Faisel Syed, national director for primary care at ChenMed, opened by recounting how his father was seen by multiple specialists to treat his heart disease, diabetes, lower back pain, and memory loss. Syed pointed out that his father's care was uncoordinated and ineffective; he was taking medications to counter the side effects from other medications because his specialists failed to communicate with one another.
From page 53...
... "Primary care doctors are supposed to be at the center of the health care delivery model and are supposed to be the gateway to better health, not the gatekeeper to medication refills and referrals. Debt has diminished the role of primary care," in Syed's view.
From page 54...
... Edes explained that given that it was a geriatric emergency department, an additional screening that identified this person as a senior at risk. As a result, he was seen by an interdisciplinary team that included the emergency department social worker, a physical therapist, and a pharmacist.
From page 55...
... Despite the COVID-19 ­pandemic striking 1 month later, that first cohort pressed on with their transformation, driven by their desire to better treat the high prevalence of older veterans with multiple chronic conditions who arrive in the emer gency department and to increase the proportion who are discharged safely to home. Edes explained that by May 2021, despite the worst pandemic in a century, 12 of the sites had achieved accreditation as geriatric emergency departments from the American College of Emergency Physicians35 and the other 8 had their applications in review.
From page 56...
... Convene champions in primary care, geriatrics, emergency medicine, palliative care, social work, and pharmacy; 5. Start small by connecting a primary care social worker or nurse coordinator with a local emergency department; start with one shift per week, or daily check in at 4 pm;
From page 57...
... "We are excited with where we are in VA and where we are going in VA, and we are eager to continue learning from and working with others on this journey," said Edes in closing. The CARIÑOS Approach: Caring for Persons with Serious Illness In the workshop's final presentation, Neela K
From page 58...
... The program started in the ambulatory setting, and it soon integrated what occurs in the clinic with the institution's hospital service. In fact, the clinic can admit patients to the hospital without going through the emergency department, Patel explained.
From page 59...
... Syed replied that the main driver of waste in the U.S. health care system is unnecessary hospitalizations, which are fueled by unnecessary emergency department visits.
From page 60...
... He credited the success rate to the trusting relationships that develop between ChenMed's patients and doctors. Shifting the focus to the challenges of working in an emergency department, Peterson asked Edes how the VA's geriatric emergency department balances the need to get patients in and out as quickly as possible with the time that it takes to conduct the geriatric assessments that are an important part of the program.
From page 61...
... In closing the workshop, Rodgers noted that despite more work to do, he is certain that with the support of the assembled community and interested organizations, progress toward further integration of serious illness care and primary care will occur.
From page 62...
... 2020. Embedding social workers in Veterans Health Administration primary care teams reduces emergency department visits.
From page 63...
... 2015. Evolving the palliative care workforce to provide responsive, serious illness care.
From page 64...
... 2017. Identifying the population with serious illness: The "denominator" challenge.


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