Building the Workforce We Need to Care for People with Serious Illness Proceedings of a Workshop (2020) / Chapter Skim
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Proceedings of a Workshop
Proceedings of a Workshop
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As noted by James Tulsky, chair of the Department of Psychosocial Oncology and Palliative Care at the Dana-Farber Cancer Institute, chief and professor of the Division of Palliative Medicine at Brigham and Women's Hospital, and professor of medicine and co-director of the Center for Palliative Care at Harvard Medical School, "for those of us who actually lead [serious illness care] programs, we know how difficult it is, and we struggle with this workforce issue." To explore some of the key workforce-related challenges to meeting the needs of people with serious illness, the Roundtable on Quality Care 1 The planning committee's role was limited to planning the workshop, and the Proceed ings of a Workshop was prepared by the rapporteurs as a factual summary of what occurred at the workshop.
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The second session focused on developing a workforce that specializes in care for people with serious illness, and speakers addressed different approaches to developing that workforce, including specialty training in geriatrics and palliative care, university-based certificate programs, and integrating interprofessional palliative care education into the undergraduate curriculum, particularly in the field of social work. The workshop's third session focused on efforts to prepare all health care professionals, not just those specializing in palliative care, to care for people with serious illness.
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Bowman pointed out that the fourth edition also acknowledges that not every care setting will have a specialty palliative care team and outlines how nonspecialty programs can use these guidelines to improve the quality of care. Brenda Nevidjon, chief executive officer (CEO)
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The speakers' presentations (as PDF and video files) are archived online.3 OVERVIEW OF THE CURRENT STATE OF THE WORKFORCE FOR SERIOUS ILLNESS CARE AND FUTURE NEEDS The United States will mark an important demographic turning point in 2030: all members of the baby boomer generation will be over 65, and older individuals will outnumber children in the United States for the first time in history (U.S.
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(Drake) • Train other health care professionals to value home care workers and value their observations about patients.
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(Hess) Strengthening and Expanding Serious Illness Care Education • Include palliative care and serious illness care content in the education programs of all health professions.
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(Bowman) • Prioritize culture change around serious illness care at the organizational leadership level to ensure that clinicians not only receive training but have the structural support to use population management and culture change skills.
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Developing and Supporting the Home, Community, and Direct Care Workforce • Increase funding for home care services overall, with targeted pass-through dollars that advance job quality, such as wages, benefits, working hours, and working conditions. (Drake, Spetz)
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(Ballentine, Kamal, Youngwerth) • Encourage state and federal agencies to fund workforce innovations that pilot care team integration, upskilling, and advanced role interventions for home care workers.
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Noting that individuals with serious illness tend to use more health care services, Washko pointed out that the sufficiency, distribution, and quality of the health care workforce that cares for those individuals are increasingly important components of improving the overall health of the population. Washko expanded on those four important issues: 1.
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In terms of quality, Washko emphasized that it is important for the nation to push for continual improvement in workforce quality by encouraging the development of cutting-edge curricula, training in various specialty settings, and unique treatments for special populations. To that end, she said, building, redistributing, and reshaping the health care workforce must be aligned with other efforts to address social determinants of health and improve overall delivery of services to individuals, including those with serious illness.
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She also noted that research on the health care and health support workforces in the context of a complex changing health care system is continuing to expand, which requires that data on these workforces must improve in order to provide meaningful information about specific occupations, measure outcomes, and gain increasingly granular levels of understanding about the workforce. DEVELOPING THE WORKFORCE TO SPECIALIZE IN CARE FOR PEOPLE WITH SERIOUS ILLNESS Karen Bullock, professor and head of the Department of Social Work at North Carolina State University, opened the first session of the workshop.
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He suggested considering "any person that touches a patient with serious illness as part of the palliative care team and engaging their skills and expertise to care for the patient." Doing so would acknowledge that all of these individuals should be provided training so they have the skills, expertise, and interest to broaden the care team and the care for patients in many ways, regardless of geographic location. Kamal added that it is important to embrace a champion of palliative care, even if that individual has not yet completed additional training.
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Kamal added that such a network could also allow palliative care teams to connect with one another and create a community of learners that could advance the entire field. Kamal highlighted the results of a recent survey of 3,000 individuals in the palliative care specialty workforce and associated workforce projections (Kamal et al., 2019)
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"Policy changes key to promoting sustainability and growth of the specialty palliative care workforce." Health Affairs (Millwood)
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She pointed out that The CSU Shiley Institute's comprehensive certificate programs for registered nurses (RNs) , APRNs, chaplains, and social workers with their master of social work (M.S.W.)
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For example, the University of Washington's interprofessional program emphasizes palliative care program design along with communication, while Smith College's social work certificate features months of mentorship and advisement. The CSU Shiley Institute's APRN certificate, which emphasizes real-world skills and nurturing nurse leaders, can be completed in 9 months.
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Ballentine said it would be beneficial to have some consistency and standardization for continuing education and continuing medical education requirements for all disciplines across states and to include specific requirements for palliative care skills among them. She explained that only 2 states have specific continuing education requirements in palliative care–related skills for nurses,9 and only 12 states have such requirements for physicians.10 Ballentine also called for undergraduate curricula to contain significant palliative care and serious illness care content for all health professions.
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In closing Ballentine echoed Kamal's call to action, and encouraged passing and implementing the PCHETA. Interprofessional Palliative Education and Its Integration into Undergraduate Curricula Barbara Head, professor of palliative care and medical education at the University of Louisville School of Medicine and associate professor at the Kent School of Social Work, began her remarks by emphasizing that "interprofessional education is much more than having students of various disciplines sitting together in a classroom listening to the same lecture and sharing the same assignments." Rather, she added, interprofessional education occurs in a collaborative, interactive environment where students learn from and with each other, with the goal of developing knowledge, skills, and attitudes that result in interprofessional team behaviors and competence.
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The resulting Interdisciplinary Curriculum for Oncology Palliative Education (iCOPE12) program has now been in operation for 11 years and is considered a permanent part of the curriculum for medical, nursing, chaplaincy, and social work students.
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. Head emphasized that diversity is an important issue to consider as we work to develop the workforce for serious illness care.
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She emphasized that certification validates the specialty of palliative and hospice social work and recognizes the social worker with advanced practice skills as an essential member of the team. Panel Discussion Following the session's presentations, Bullock led off the panel discussion, noting the common themes that were presented around interprofessional education and training, as well as evidence-based approaches to care for people with serious illness.
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Bullock then invited Denise Hess, executive director of the Supportive Care Coalition, representing the Association of Professional Chaplains, to provide an overview of the workforce issues facing professional health care chaplains. Hess noted that professional health care chaplains face the same workforce issues as the other fields involved in caring for those with serious illness.
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Washko commented that, because the field is growing so fast, it has been hard to develop the evidence base needed to answer some of the key policy and programmatic questions that would enable the field to identify the best way forward. Another challenge, according to Dingfield, is that recruitment of the different professions into serious illness care is also not keeping up with the demand, nor is funding to pay for additional training.
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In 2018, the Hospice and Palliative Credentialing Center, in partnership with the Hospice and Palliative Nurses Association, approved more than 3,600 new certifications and recertifications in addition to the 18,000 health care professionals currently certified in specialty hospice and palliative care.17 16 For more information, see https://www.congress.gov/bill/105th-congress/house bill/2015/text/enr (accessed March 3, 2020)
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Kamal, who was one of Graves's students then, said that particular training had a lifelong impact on how he interacts with patients. Several other workshop attendees voiced their support for the valuable role that chaplains play in serious illness care.
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"Nurses are central to interdisciplinary care and serious illness," said Ferrell, who, together with her ELNEC collaborators, has developed curricula 18 For more information, see https://www.congress.gov/bill/116th-congress/senate bill/1921 (accessed March 9, 2020)
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Another important theme is that palliative care is needed for people with all serious illnesses as well as for sudden death, such as in the emergency department. From the project's inception, ELNEC has included evaluation of outcomes as an integral part of the program (Malloy et al., 2007; Marshall, 2001; Matzo et al., 2004; Sherman et al., 2004, 2005)
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. In closing, Ferrell offered a personal message: "If someone you love is seriously ill, you would want their symptoms well managed, support for your family, good communication, spiritual and psychosocial support, and a death that respects and honors their life." That will not happen, she observed, "unless clinicians are trained to provide that care." Equipping Mid-Career Clinicians with Core Skills for Serious Illness Care One outcome of the aging of the U.S.
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Bowman pointed out that clinicians graduating today have more exposure to palliative care because the majority of academic medical centers have specialty palliative care teams. However, much of the workforce currently practicing does not have such exposure to palliative care.
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The problem is that palliative care leaders often lack the time to do this type of outreach and education work, which limits the capacity to scale training programs and also contributes to clinician burnout. According to Bowman, one solution is to position palliative care leaders as strategic partners in population management for seriously ill patients and allocate time for them to participate in educational activities.
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The solution here, said Bowman, is to emphasize the message that palliative care encompasses not only specialist palliative care skills, but rather, the skills needed by all clinicians who seek to provide high quality health care for people with serious illness. Lastly, Bowman pointed out that training alone is not sufficient to create practice change: it is incumbent on leaders of provider organizations to prioritize culture change around serious illness care to ensure that clinicians not only receive training but have the structural support to use those skills.
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Residents must learn to participate effectively and compassionately in these meaningful human interactions, for the sake of their patients and themselves. Holmboe reiterated that this applies to all residents and fellows, not just those in palliative care programs.
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34 BUILDING THE WORKFORCE FOR SERIOUS ILLNESS CARE BOX 2 Accreditation Council for Graduate Medical Education (ACGME) Training Milestones for Competencies in Patient- and Family-Centered Communication To help guide the training process, Holmboe's organization has created milestones for each competency, based on what is called the "stage model" of development.
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He added that ACGME has approved two pilot programs in hospice and palliative care, including the one Dingfield spoke about earlier. Another program at the University of Colorado Medical School is part of its interprofessional palliative care certificate program and allows mid-career physicians in rural and underserved areas to train through distance learning.
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Trautman noted a need to continue building skills and commitment across the nursing profession in order to continuously evolve learning, comfort, and expertise in caring for patients with serious illness. She explained that there are still many barriers to overcome, such as adequately preparing faculty, the lack of up-to-date resources, the variation of content in different programs, and the accessibility of potentially false information online.
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In the future, said Trautman, most care is not going to be delivered in the hospital, so more health systems are creating palliative care programs that will work outside of the hospital walls. As those programs develop, she noted, it will be important for all members of palliative care teams to support one another to be as skillful as possible when interacting with patients and families.
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DEVELOPING THE WORKFORCE FOR COMMUNITY-BASED CARE Tamarah Duperval-Brownlee, chief community impact officer of Ascension and president and CEO of Providence Health System, shared that the workshop's third session would describe the community-based care workforce, its roles, and the people to whom it provides care and support.
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Lee Institute for Health Policy Studies, associate director of research at the Healthforce Center at the University of California, San Francisco (UCSF) , and director of the UCSF Health Workforce Research Center on Long-Term Care, explained that the community-based care workforce includes a wide array of health care professionals, including physicians, nurses, pharmacists, physical and occupational therapists, personal care and home health aides, community health workers and navigators, home health nurses, community paramedics, social workers and licensed clinical social workers, spiritual care providers, peer providers, and family caregivers.
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"If you have ever watched a good community health worker or home care aide in their job, that moniker of unskilled is the most inappropriate moniker you could ever hear," said Spetz. Spetz pointed out the range of job titles for community health workers (e.g., navigators, coordinators, "promotoras")
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Home care has specific financing challenges, she noted, in that most people pay privately, and Medicaid has multiple programs that are not consistent with one another. In addition, the self-direction options allow beneficiaries to select their aide or how to spend their benefits, including hiring family members in some states, but there is little research on the effect of self-direction on care quality and outcomes.
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Another approach is to increase payments for home- and community-based services with wage pass-through requirements, in which payment increases must be used for wage increases. In addition, some states are establishing training standards and opportunities for growth: Washington State,25 for example, requires 75 hours of entry-level training for home care aides and wage increases for advanced skills.
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However, Drake noted, as the demand for the services that home care workers provide increases as the U.S. population ages, it is imperative to build a system with a strong and stable home care workforce to support this demand.
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"We have put less value on work that is performed in the home, and we have valued home care less because of who has traditionally performed it," said Drake. She emphasized that "if we want real solutions to strengthen this workforce to care for people with serious illness, we have to understand and try to reconcile these historically discriminatory relationships and put in policies and practices that address the inequity that is based on workers' gender, ethnicity, race, and country of origin." Home care workers, according to Drake, often feel unprepared for the complexity of the work they do and are disconnected from the delivery of health care and social services.
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Home care workers also need training on the social and environmental determinants of health, how to identify stressors, and how to support a patient's social connections. Drake pointed out that a home care worker who can identify food insecurity, for example, could relay that information to the care team's social worker, who could then connect the patient to food supports in the community.
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Drake said that upskilling the workforce and integrating home care workers with the care team are just a few components of addressing the issue of job quality -- policy solutions are also needed. She suggested increased funding for home care services overall, with targeted pass-through dollars for wages and other job quality improvements, and targeting pass-through dollars for training in Medicaid home care service reimbursement rates.
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The majority of home care workers are personal care aides (HHS, 2017)
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"We need to make this a federal standard and have competencies and skill sets to meet the needs of older adults," said York. Social workers are another important member of the care team that is often forgotten when talking about workforce demands.
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She also suggested integrating care teams across health care, the direct care workforce, and social work; expanding training in geriatrics for the entire health care workforce by expanding programs such as GWEP and GACA; and professionalizing the direct care workforce with competency and professional standards, highquality training, and higher wages. Innovations in Community-Based Care Lauran Hardin, senior advisor of partnerships and technical assistance for the Camden Coalition of Healthcare Providers' National Center for Complex Health and Social Needs, began her presentation by sharing her personal experiences with serious illness.
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The Coalition provides care to such individuals in the Camden, New Jersey, region through its community-based model with a combination of nurses and community health workers supported by a social worker (referred to as "The Care Team")
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Lake County, California, which has some of the poorest health outcomes in all of California. Hardin described the key components of the care model as: • Designing care to meet the needs of the unique population in the community; • Using data to explore the problems that need solving; • Mapping the existing assets and partners in the community; • Integrating comprehensive assessment, including the social determi nants of health; • Asking patients what matters most to them; • Including patients and family caregivers in program design; and • Designing structures for rapid cycle process improvement to address the root causes of the problems facing the community (Hardin et al., 2016)
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Audience Discussion Opening the discussion session, Duperval-Brownlee reiterated the main points of the presentations in the workshop's third session, including • The opportunity to improve taxonomy of occupations to better capture the importance of those roles and influence changes in payment structures; • The importance of articulating the value of home care workers to address issues of wage congruency and job quality, particularly for women and people of color; • The opportunity to integrate care teams across the health care system and professionalize the direct care workforce; and • The importance of involving the person being served when designing a system of care delivery. Ballentine asked how the recent California legislation35 that reclassifies large categories of contract workers as employees would affect the community-based care workforce.
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He noted that the current payment structure -- where some benefits are offered through Medicaid but there are high out-of-pocket costs -- likely applies downward wage pressure and asked how we can advocate as a system to professionalize and fund direct home care workers. Spetz responded that the separation of different programs is problematic -- some states do realize that higher pay and better working conditions would reduce turnover rates and produce positive cost savings downstream.
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Spetz called for clinician leaders and health executives to step up and say that every member of the care team needs to be involved, that there is more than enough work for everyone. Allowing a home care aide to be involved in medication administration, for example, is not going to hurt anyone else's job.
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The organization created a steering committee to oversee all aspects of the palliative care program culture and curriculum. That committee, including members of the nursing staff, administration, social services, and pastoral care and the medical director, enumerated all the steps needed to support all health system staff -- nurses, social workers, chaplains, certified nursing assistants, dietary staff, and housekeepers -- at a facility that did not originally have a dedicated palliative care team.
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Teamwork to develop the best solutions for each individual 4. The flexibility and willingness to make changes as residents' needs change Sister Di Maria pointed out that training is the most important aspect of implementing a culture of palliative care, stressing that all staff members need to be trained in the principles of palliative care, the importance of identifying the five domains of pain, the differences between palliative and hospice care, and how their department contributes to the overall palliative care culture.
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Caring for the Seriously Ill Child at Home Pediatric palliative care is provided primarily to children who are not expected to reach adulthood, explained Jody Chrastek, pediatric advanced complex care team coordinator at Fairview Home Care and Hospice. She noted that some children in her program live for a few hours, while others live for years.
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"Above all, we want compassion," she concluded. Reaching Rural Areas Through Technology Jeanie Youngwerth, director of the palliative care curriculum and Palliative Care Program at the University of Colorado School of Medicine, and her colleagues are leveraging telehealth to bring an innovative care model and interdisciplinary team to care for individuals with serious illness in rural areas of Colorado.
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Youngwerth recounted how the physicians in outlying areas have recognized the importance of the telehealth approach. She reported that after working as part of these palliative care teams, several health care professionals have gone on to complete graduate work in palliative care through the University of Colorado.
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For too long, she said, social workers have been trying to earn a seat at the table and get people to understand what it is they do and how they contribute to and are effective members of care teams. Ferrell, commenting on the education approaches she heard discussed, said she believes that a combination of these approaches is needed to produce the workforce to meet the demands for practitioners of all levels of skill and experience to care for those with serious illness.
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It is not just a matter of give us more people but of who is doing what." Ferrell also noted that other health care professionals, such as PAs, are coming to the table to be included as part of palliative care teams. "When we invite new people to the table who have not been there, that is the day that our patients in all areas will be much better served," Ferrell explained.
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Ferrell cautioned that most of the palliative care teams with which she is familiar are so overwhelmed just managing their own work that they may not have the capacity to expand and take on telehealth. In her opinion, a better approach would be for palliative care programs to take advantage of existing telehealth networks and work with the APRN or social workers who may already be involved with providing telehealth services.
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A second key theme was the importance of tending to the health and resilience of specialty team members who do not always feel supported in that work, and for the home health care workers who play such a giant role in providing care for individuals with serious illness. A third theme was the need to continually make the case that training in palliative care skills for practicing, mid-career clinicians is good for patients, good for clinicians, and good for the organizations that employ them.
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2016. Care team integration and training of home care workers -- impact study.
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2019. Policy changes key to promoting sustainability and growth of the specialty palliative care workforce.
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U.S. home care workers: Key facts.
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