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Proceedings of a Workshop
Pages 1-72

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From page 1...
... While aging baby boomers are increasing the proportion of patients in the Medicare population over time, the sickest and most vulnerable patients needing health system support and other services to meet their complex needs can be found across the age spectrum and in a broad range of care settings, from perinatal care to geriatric care. Recognizing the need to thoughtfully consider and address the challenges and opportunities in efforts to improve care quality and value, the Roundtable on Quality Care for People with Serious Illness of the National Academies of Sciences, Engineering, and Medicine held the public workshop Integrating the Patient and Caregiver Voice into Serious Illness Care.
From page 2...
... ,2 the roundtable aims to foster ongoing dialogue about critical policy and research issues to accelerate and sustain progress in care for people of all ages experiencing serious illness. In his introductory remarks opening the workshop, James Tulsky, chair of the department of psychosocial oncology and palliative care at Dana-­ arber Cancer Institute, chief of the division of palliative medicine at F Brigham and Women's Hospital, and professor of medicine and co-director at the center for palliative care at Harvard Medical School, applauded the focus on placing patients and their families at the center of every session, noting that the roundtable membership agreed to launch its work by focusing on the voices of the people living with serious illness.
From page 3...
... The workshop format combined interviews of caregiver and clinician pairings with moderated panel presentations and interactive audience discussion exploring a range of topics, including • gaps, challenges, and strategic solutions for integrating patient, care giver, and family voices into person-centered care services delivery across ages, diagnoses, and disciplines; • opportunities for supporting spirituality, values, beliefs, priorities, and preferences to provide comfort and meaning for patients and loved ones coping with serious illness; • addressing health equity, poverty effects, and outcomes disparities experienced by patients and caregivers among geographically and ethnically diverse and vulnerable populations; • advancing person-centered and family-oriented care through com munity outreach initiatives involving support of chaplaincy, spiri tual counselors, community health workers, and others tuned to patient and family needs and preferences; • nurturing healthier connections among patients, caregivers, and clinicians through training and development of person-centered communication skills that support integration of patient and family values in care planning and shared decision making; • integrating impairment-driven prehabilitation and rehabilitation services to complement palliative care and other services delivery focused on supporting patient and caregiver quality of life, func tional goals, and priorities; • implementing a relationship-centered approach to addressing unique challenges, such as providing team-based perinatal and neonatal care for seriously ill infants and their families; and • innovations, interventions, and insights for supporting and nor malizing conversations about patient and family needs, values, and preferences and implementing them in practice.
From page 4...
... The workshop speakers' presentations (as PDF and audio files) have been archived online.3 INTEGRATING THE PATIENT, CAREGIVER, AND FAMILY VOICE INTO SERIOUS ILLNESS CARE: CHALLENGES AND OPPORTUNITIES Amy Berman (featured in the photo on the following page)
From page 5...
... Berman observed that every single person in the room has had "a deeply human experience that connects us all." She urged participants to "integrate it in every cell in your body because that's really what it takes to do things right." The Evolving Landscape of Serious Illness Care Further setting the stage for the first session, Berman provided some specific examples of how the serious illness care landscape continues to evolve. She mentioned the anticipated arrival of the new administration and members of Congress, which she said will likely bring many changes.
From page 6...
... •  ecognize and honor patients' and family members' expertise R about what is most important to them in the context of coping with serious illness. (Berman, Cohn, Goodman, Jehlen, Kirch, Kobler)
From page 7...
... •  reate safe havens and moments -- a "centered space in the C middle of the storm" -- where patients and families feel safe and honored by responding to what is most important to them in the context of serious illness. (Berman, Cabotaje, Jehlen, Kirch, Kobler, Lord, Steinhauser, West)
From page 8...
... Prehabilitation and Rehabilitation Support •  creen patients with serious illnesses for functional impairments S that can cause disability and deconditioning. Make referrals to prehabilitation and/or rehabilitation services to address these needs and improve outcomes.
From page 9...
... •  se available tools to facilitate conversations about what is U important to loved ones in the setting of living with serious illness, and initiate conversations with clinicians about these priorities. (Goodman, Jehlen, Sudore)
From page 10...
... . These are just a few examples of the evolving landscape, which Berman noted continues to move in a direction that offers opportunities for improving serious illness care to meet people's needs throughout their lives, including at earlier stages in the care continuum.
From page 11...
... Personal Perspectives on the Essential Elements of Optimal Care In her introduction of the first workshop session, which featured caregivers paired with a pediatrician and a geriatrician, Berman explained that the stories they would share about their experiences and approaches illustrate optimal care. The two sets of presenters, Berman explained, serve as "examples for the nation" of what high-quality, person-centered care involves.
From page 12...
... 12 PATIENT AND CAREGIVER VOICE IN SERIOUS ILLNESS CARE particularly critical piece of our journey with our daughter because it felt like a team effort and something that was very sacred and very important as there were difficult decisions to make along the way, and Rick helped us do that," said Lord. Another key member of the care team was a grief counselor who worked with the family throughout Cameron's life and after it ended, supported them in their bereavement.
From page 13...
... Even before helping the Lords through the diagnosis, treatment, and death of their daughter, Goldstein was one of those pediatricians who chose to treat the most seriously ill children. "They were the VIPs of my practice," said Goldstein, who noted that at the time Cameron was born, pediatric palliative care was a very "de novo" practice, but that he was drawn to what he called "meaning-based medicine that reckoned with the primal responsibilities that parents have for their children regardless of what happened." Cameron was a particularly difficult case for Goldstein because his daughter and the Lords' first child were the same age and went to the same preschool, and his second child and Cameron were born within 1 month of each other.
From page 14...
... "I saw firsthand the value of palliative care, and I wanted all parents in this situation to receive palliative care." She discovered then that what came to be called palliative care was a rarity in pediatrics, so it became her mission to spread the word and to help pediatric palliative care grow as a field. The Lord family started a small foundation, the Cameron and Hayden Lord Foundation, that the children's grandparents funded initially and friends and family now support with annual donations.
From page 15...
... But some seriously ill patients, he explained, some just have higher levels of needs based on their histories, symptom progression, and how medicalized their lives are after the diagnosis. To Goldstein, subspecialty palliative care -- in addition to informing and supporting primary palliative care -- has an important focus in that way.
From page 16...
... Her experience did not feature consistent physician support such as the Lords received from Goldstein, but that changed when the Wests (featured in the photo on the following page) met Diane Meier, who was then a geriatrician and is now director of the Center to Advance Palliative Care and professor of geriatrics and palliative care at the Icahn School of Medicine at Mount Sinai.
From page 17...
... Her first step was to convene a meeting of all of the doctors treating Doug to get them all speaking to one another about how to plan for and coordinate his care. "Because there was no electronic health record, no one even knew what everyone else was thinking," said Meier.
From page 18...
... Berman synthesized key messages that emerged from the discussions with Lord, West, Goldstein, and Meier to reinforce what they talked about in describing optimal care: • meaningful medicine • transformation • relationships and partnerships among the provider, the seriously ill person, and the family • meeting clinical needs that are not being met
From page 19...
... Kimberly Johnson, associate professor of geriatrics at Duke University School of Medicine, for example, did so by describing two contrasting experiences with serious illness in her family. She explained that her maternal grandmother, who died before Johnson was born, lived in rural Mississippi and died in her late 30s from what was likely uterine cancer.
From page 20...
... Chambers emphasized the importance of ensuring that caregivers have the supports they need -- be they emotional, spiritual, or financial, noting that serious illness has an impact on the entire family, and in many cases "threatens the very financial stability of the entire family," as "once a chronic condition comes into play, everything gets turned upside down." She pointed out that this is the case for all families, even those of means, but "it just becomes more financially toxic for those populations that are already very limited in their resources, already are experiencing disparities" in access to health and social services among other things. Chambers also emphasized the importance of engaging the caregivers in the conversations: "It is no longer just solely focusing on the patient, but all the surrounding pieces that you need to bring into play" to orchestrate care for the seriously ill.
From page 21...
... But again, as a geriatrician, my patients and the family members that take care of them are making many decisions over time. People need support for that." For a person living with a serious illness, the ability to contribute to other people's lives helps them make meaning of the situation, said Steinhauser, but part of making meaning for someone with serious illness can also involve letting others contribute to their care.
From page 22...
... The report found that "Ideally, health care harmonizes with social, psychological, and spiritual support" to achieve the highest possible quality of life for people of all ages with serious illnesses and that "a palliative approach can offer patients and families the best chance of maintaining the highest quality of life for the longest possible time" (IOM 2015, p.
From page 23...
... Recognizing these challenges, workshop speakers described efforts to accelerate the expansion of palliative care's reach to all communities where the majority of seriously ill adults, infants, and children receive their care. Such broadened access will require dedicated commitment to developing primary palliative care skills and reliable payment mechanisms for deployment of those learned skills across the entire workforce.
From page 24...
... The one possible exception to that situation is with pediatric palliative care, said Goldstein, who added, "I think that maybe there is a different kind of investment in a children's hospital and the focus on the family allows that." Meier suggested that one way to address the lack of universal reimbursement for palliative care is to get the public to demand it as a key aspect of optimal care. "We need a public awareness campaign that makes the public angry if they are not getting it," said Meier.
From page 25...
... . For example, when a referred patient asks Meier what she does, she draws on this consumer-tested description to explain that the patient's doctors asked her to see what she can do to help improve that person's quality of life and add an extra layer of support for both patient and care BOX 2 Defining Palliative Care Palliative care is specialized medical care for people living with serious illness.
From page 26...
... Conversation and dialogue are also needed to understand how patients and families prefer to receive their medical information, and to provide the emotional, social, and perhaps even financial support that caregivers need as they face the demands of providing care for someone with a serious and often chronic illness. Developing Primary Palliative Care Skills Drawing on learned communication skills to explore what a patient facing serious illness really wants is critically important, explained Anthony Back, professor of oncology at the University of Washington and Fred Hutchinson Cancer Research Center and co-director of the Cambia Palliative Care Center for Excellence.
From page 27...
... Two-thirds say they do not have the time, 60 percent say they are not sure the time is right, and 46 percent are unsure of what to say. This may be because 68 percent of physicians report they had no formal communication skills training on how to talk about care for serious illness (PerryUndem Research/Communication, 2016)
From page 28...
... These speakers included Shonta Chambers, Kimberly Johnson, and Stacy Fischer, associate professor of general internal medicine at the University of Colorado School of Medicine. For some individuals and families, particularly those in rural and underserved communities, the societal context is a barrier to receiving appropriate care for serious illness.
From page 29...
... Moderator Bob Bergamini, medical director for palliative care at Mercy Clinic Children's Cancer and Hematology and representing the Supportive Care Coalition, agreed. He noted that "children with disabilities also find an incredible number of assumptions, presumptions, and biases against them" that result in lack of attention to their suffering and discomfort.
From page 30...
... Discussions with these groups revealed serious gaps in understanding about serious illness care, particularly issues related to advance care planning. One finding, for example, was that Latino patients who had been admitted to the hospital within the previous 24 hours and who should have been counseled on advance care planning were much less likely than other patients to understand what an advance directive was or even remember having been counseled.
From page 31...
... . The intervention group received culturally tailored and linguistically appropriate materials covering advance care planning, pain management, and hospice care, plus a home visit from a patient navigator.
From page 32...
... . The Experience of African Americans with Serious Illness Raising awareness about serious illness care and building trust and connections as Fischer described are equally important in addressing health disparities that lead to poorer outcomes in African American communities, noted Johnson.
From page 33...
... " For Johnson, a thoughtful response to her grandmother's question and the vexing problem of disparities requires thinking about equity throughout the continuum of illness, starting with disease prevention and appropriate treatment. It also includes efforts to improve interactions and experiences of serious illness care at that other end of the spectrum that ensures that the kind of care people receive is reflective of their goals, values, and beliefs.
From page 34...
... Although there are materials designed to raise awareness specifically among African Americans, care providers are in the position to have the strongest effect by improving their ability to communicate with and listen to patients and families. "The fact is that when you are seriously ill, health care is not the only thing you need, and for African Americans who have lower income and fewer resources, those same challenges that they face in
From page 35...
... Beauty and barber shops in urban areas are also serving as conduits for health information in African American communities. Duke University, said Johnson, has developed a program that churches can use to educate their congregations about advance care planning and serious illness care.
From page 36...
... Buck explained that many people in their 30s and 40s are experiencing serious illnesses that "should be chronic and people should be living with for a very long time, but they are not." Most of the programs in West Virginia are designed for people who are aging. While the state does have one of the oldest populations in the nation, Buck explained, the issue is that "the next generation is not going to get there" because they are dying at much earlier ages.
From page 37...
... SOURCE: As presented by Joy Buck, December 15, 2016. of people living with serious illness with what is happening to their family.
From page 38...
... " ADDRESSING SERIOUS ILLNESS IN PERINATAL AND NEONATAL CARE SETTINGS Lessons learned about the delivery of palliative care in perinatal and neonatal care settings, building relationships, and honoring ritual as key components of serious illness care were highlighted by Kathy Kobler, advanced practice nurse coordinator in the Center for Fetal Care and Pediatrics Palliative and Supportive Care programs at Advocate Children's Hospital in Park Ridge, Illinois. Perhaps no serious illness setting has a bigger impact on a family than when that illness affects an unborn child.
From page 39...
... As Kobler explained, these families made clear "that they want time to be connected in relationship, to prepare, and to be able to advocate" for the baby with integrity. To meet that expressed need, Kobler and her palliative care colleagues around the country are working to establish a relationship with the medical care team early in the prenatal process.
From page 40...
... Kobler then disseminates the care plan to ensure that every care team member is aware of what the parents believe is important to them and what their hopes are for the care of their child (Loyet et al., 2016)
From page 41...
... "We are constantly assessing and refocusing with families, all within a familycentered approach, to honor their wishes and preferences along the way." She recounted a conversation she had just prior to the workshop with a family that was in the process of taking in the scope of their newborn son's serious illness. The mother looked at her and told her that she was trying to make decisions for her son in a way that would reflect his desires if he could make them known.
From page 42...
... Impairment-driven rehabilitation, she explained, focuses on a specific problem. Physiatrists such as Silver are medical rehabilitation specialists who for the most part treat people with serious illness, and she recommended that palliative care teams include the support of rehabilitation professionals to help them address unnecessary suffering (Silver et al., 2013)
From page 43...
... Silver emphasized that rehabilitation and prehabilitation should be important components of meeting the Institute for Healthcare Improvement Triple Aim for patients with serious illnesses.8 This is particularly true for cancer patients and for individuals with well-studied progressive illnesses. "We can predict the kinds of impairments people have because we have a lot of information on that," said Silver.
From page 44...
... "Raising consciousness about that in the palliative care world I think is really important when the goal of a patient is to get treatment and to extend their life as long as possible," Altilio concluded. Silver agreed, emphasizing the opportunity for palliative care and rehabilitation services to work together as referral resources for each other, urging that "you sort of owe it to your patients, and rehab will really help you." SUPPORTING SPIRITUAL, SOCIAL, AND PSYCHOLOGICAL NEEDS Several workshop speakers addressed the critical importance of integrating the social, psychological, and spiritual aspects of comprehensive quality care for people and caregivers coping with serious illness.
From page 45...
... Encouraging such heart-to-heart talks between the seriously ill person and family members can help to alleviate or even prevent the regret that family members often feel after their loved one dies. Lord recounted that one of the most profound conversations she has had in her work with the Courageous Parents Network was with a mother whose 9-year-old daughter died from cancer.
From page 46...
... . "We also know that satisfaction and quality of life in the setting of serious illness are significantly higher when spiritual care is attended to, and that when people have unmet spiritual needs, costs actually increase," she explained (Balboni et al., 2010)
From page 47...
... To illustrate the importance of surrendering the role of expert and listening with an open mind, Cabotaje told the story of a 71-year-old Vietnamese Buddhist father, Vin, who was terminally ill, and his 21-yearold daughter. The medical team caring for this man was unanimous in their opinion that he was dying and in a great deal of pain, and that the current treatments they were providing him were merely postponing the date of his death while causing unnecessary suffering.
From page 48...
... The family arranged for a Vietnamese Buddhist priest to perform the needed rituals, and asked to meet with the medical team about their father's end-of-life care goals. As the sisters observed their father's increased suffering, they asked the medical team to transfer him to comfort measures only.
From page 49...
... When they met, the patient told Cabotaje she was afraid of dying and was "not ready to meet God." Through their conversation about her faith and prayer, however, the patient found her way to accept where she was and now "could be fine with God in the same way." This transition brought out an important opportunity for Dana to ask forgiveness for shouting at her bedside nurse, Joan, who actually had felt uncomfortable about caring for Dana because she was transgender. Dana's gesture of seeking Joan's forgiveness helped the two of them connect so that Joan was able to provide Dana with loving, attentive care during her last days.
From page 50...
... "We had to teach them about HIV so they would not be scared." One technique he used was to interview HIV/ AIDS patients in front of faith communities and then recruit members of that faith community to form support teams for these individuals. As the tide turned in the battle against HIV/AIDS and patients began recovering from this disease, the support teams started looking for a new mission, and Marler gave it to them -- to reach out to other people with serious illness in the community and then teach him and others what it was like to apply what they learned supporting HIV/AIDS patients to caring for others with serious illness.
From page 51...
... As several speakers and participants have acknowledged, this is because few actually receive formal training on how to have conversations about patient and family preferences and desires in the face of serious illness.
From page 52...
... "It is ask-tell-ask, ask-tell-ask, and it is a teachable skill, but no one from our generation ever got that during our training," she added. She noted that these communication skills can be taught in the same way that medical students learn other vital skills, where the actions are reinforced enough
From page 53...
... Learning Person-Centered Communication Skills Back noted that numerous studies have shown that with appropriate training, physicians and other health professionals can learn better communication skills that would enable them to speak with their patients about serious illness (Arnold et al., 2015; Back et al., 2009; Clayton et al., 2013; IOM, 2015)
From page 54...
... Although the current CMS reimbursement for having an advance care planning conversation is important, the survey data made clear that payment alone without skills training does not improve likelihood or adequacy of these serious illness conversations. Back pointed out that electronic health records also need to be improved to better inform physicians about which patients are at highest risk, but he believes that clinician training for all health care professionals is key to solving this problem.
From page 55...
... "They are about values and about what matters to you, not what is the matter with you," said Goodman. These tools include two different conversation starter kits to foster discussions with family members and doctors and two specialty starter kits for parents of seriously ill children and for families and loved ones of people with Alzheimer's disease and other forms of dementia.
From page 56...
... e need that voice of the community going in, as well as the responsiveness of the health care clinician community. That is the way change happens." Teaching Behaviors That Improve Conversation: Common Practice's "Hello" Conversations are key to providing high-quality care for people with serious illness.
From page 57...
... PROCEEDINGS OF A WORKSHOP 57 However, if the spouse listens and expresses empathy, then offers advice, the conversation is much more likely to go well because both spouses will believe the other spouse listened. Jehlen explained that was the goal of his work with colleagues at Common Practice in developing the game "Hello" (formerly called My Gift of Grace)
From page 58...
... A recent study found that 78 percent of the people who played the game went on to take an advance care planning action (Van Scoy et al., 2016a)
From page 59...
... "Often, when we think about advance care planning, we think about one decision about the end of life, but as a geriatrician, I see my patients and family members making many decisions over time, and people need support for that," said Sudore. The missing piece, she said, is providing people with skills ahead of time to identify what is most important to them and how they want to live, and then communicate that with loved ones and providers.
From page 60...
... . Sudore outlined key elements of successful advance care planning in the medical environment, including educating clinicians and other health care professionals, as well as tools that activate patients to discuss their priorities and preferences.
From page 61...
... . That transition point is when the discussion turns to the benefits and burdens of care, where the most important decisions occur, and according to the interviews he and his colleagues conducted, it is the time when those with serious illness have definite wants from the system: They want help FIGURE 5  The patient journey.
From page 62...
... Moreover, Mitchell explained, while the project's initial intention was to work with consumers to create market forces that would demand change to which doctors would respond, their research also revealed that seriously ill people "are really not in the demanding mood" and "are not really ready to have this big campaign." Instead, Mitchell elaborated, they realized the real disruptions or triggers come from the questions people ask and the importance to them of the relationships they build with their care team. These conversations, he said, which help doctors think of patients as people, are the fundamental foundation for building those relationships.
From page 63...
... Noting these can be two very different worlds, she also explained how sharing with clinicians the transcripts of what people are really saying is happening in the community can be an effective "sensitizing" tool as part of workforce communication skills training, helping clinicians to develop skills that enable them to listen and respond to people's beliefs and values so they feel heard. Mitchell echoed the importance of equalizing the playing field by honoring the expertise patients bring to the table about what is important to them, pointing out that "you are the only person who is an expert on you." The panelists also talked about the importance of supporting these conversations earlier so it becomes "normal" to have them upstream, before people confront serious illness.
From page 64...
... A key tactic for sustainability and dissemination will involve getting these trainings and tools into systems that already have people flowing through them, rather than basing a dissemination model on screaming from the mountaintop, explained Mitchell, because "it is really expensive to scream from the top of the mountain." Goodman agreed that obtaining significant funding for dissemination is difficult, and she believes that tapping into social media may be at least as effective as large-scale public information campaigns. She also expressed optimism that the baby boomer generation will continue to be the agent for a culture change with regard to how its voice will be heard as boomers ­ grow older, develop serious illnesses, and demand care.
From page 65...
... She also talked about thinking of advance care planning as extending beyond medical planning to include "life planning" that involves medical‒legal partnerships, helping people stay in their homes, thinking about what to do to take care of the children, and other support needs people express when involved in care planning. Mitchell likened normalizing these conversations to "building muscles over time." You start to change thinking by giving permission for the conversations and working on small pieces that develop different habits.
From page 66...
... Reflecting that reality, many of the workshop's presentations and discussions highlighted two key approaches to consider in order to create personcentered care plans that reflect what matters most to people: • Pursue and enable earlier communication about people's values and preferences for their quality of living, deploying tools and commu nity outreach strategies that normalize and systematize these con versations that make individual wishes clear, ideally before serious illness occurs. • Prioritize primary palliative care skills training for all clinicians and others who care for people coping with serious illness to enhance capacity for assessing needs as well as listening and talking to patients and caregivers so their personal preferences and values are systematically known and honored.
From page 67...
... 2. A huge amount of life is possible for seriously ill infants, children, and adults if we learn how to ask for and embed their expertise about what is important to them.
From page 68...
... 2015. America's care of serious illness: 2015 state-by-state report card on access to palliative care in our nation's hospitals.
From page 69...
... 2015. Apoyo con cariño: A pilot randomized controlled trial of a patient navigator intervention to improve palliative care outcomes for Latinos with serious illness. Journal of Pain and Symptom Management 49(4)
From page 70...
... 2016. The fetal care team: Care for pregnant women carrying a fetus with a serious diagnosis.
From page 71...
... 2015. The advance care planning PREPARE study among older Veterans with serious and chronic illness: Study protocol for a randomized controlled trial.
From page 72...
... 2016a. Can playing an end-of-life conversation game motivate people to engage in advance care planning?


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