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6 Health Literacy in Palliative Care Programs
Pages 71-94

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From page 71...
... Anne Kinderman, Director of the Supportive and Palliative Care Service at San Francisco General Hospital and Assistant Clinical Professor of Medicine at the University of California, ­ San Francisco, showed how her service helps patients navigate difficult decisions in the hospital, and Reverend Tyrone Pitts, co-chair of the Interfaith and Diversity Workgroup at the Coalition to Transform Advanced Care, Ecumenical Officer and General Secretary Emeritus of the Progressive National Baptist Convention, and President and Chief Executive Officer of Bridges International LLC, described a faith-based movement to transform health disparities. An open discussion moderated by Marian Grant, a nurse practitioner and assistant professor at the University of Maryland School of Nursing, followed the four presentations.
From page 72...
... HEALTH LITERACY AND PALLIATIVE CARE IN A LARGE HEALTH SYSTEM1 Stacie Pinderhughes started her presentation with a story about Mrs. W., a 61-year-old Navajo American woman who she met in the intensive care unit (ICU)
From page 73...
... Pinderhughes shared that story because she believes that it illustrates how palliative medicine is a natural fit for health care literacy. "I think the key elements of palliative care service delivery creates an environment that allows health literacy to emerge," she said.
From page 74...
... These consensus groups, explained Pinderhughes, develop evidencebased clinical practices that affect patient care for the entire Banner Health system. She believes that by working collaboratively with the other 21 clinical consensus groups, the palliative care group will be able to affect health care literacy.
From page 75...
... With regard to advance care planning, ProHEALTH Care Support uses New York State's Medical Orders for Life Sustaining Treatment (MOLST) 2  This section is based on the presentation by Dana Lustbader, Clinical Professor Critical Care and Palliative Medicine at Hofstra North Shore–LIJ School of Medicine, Department Chair of Palliative Medicine at ProHEALTH Care Associates, and Medical Director of ProHEALTH Care Support, and the statements are not endorsed or verified by the Academies.
From page 76...
... The ProHEALTH Care Support team comprises Lustbader and 1 other physician, a program coordinator, 5 registered nurses, a licensed clinical social worker, and 10 to 15 volunteers. The reason for the heavy emphasis on registered nurses is that financing is not on a fee-for-service basis but
From page 77...
... ProHEALTH Care Support collaborates with local hospice and home health agencies, as well as with ProHEALTH Urgent Care and community paramedics. It makes heavy use of virtual visits to leverage physician expertise and provide around-theclock availability.
From page 78...
... In addition, ProHEALTH Care Support receives a small amount of revenue from the limited fee-for-service billing that exists for this type of home-based, high-touch care, though this fee comes nowhere close to covering the cost of the services provided. Because ProHEALTH Care Support is in a Medicare shared savings accountable care organization (ACO)
From page 79...
... What is known about advance care planning in vulnerable patient populations such as these is that low health literacy is associated with less advance directive completion and less certainty about choices, even with targeted interventions, according to research conducted with patients in San Francisco General's general medicine clinic (Sudore and Schillinger, 2009; Sudore et al., 2010)
From page 80...
... From the provider's perspective, the patient who has low health literacy and is facing life-and-death decisions may come across as quiet or disengaged, ambivalent or confused about their choices because they cannot recall the information dumped on them at an earlier encounter. Rather than dragging their feet about completing advance directives, patients may merely be overwhelmed.
From page 81...
... . She did refer, though, to the California Advance Health Directive developed for patients with low health literacy (see Figure 6-2)
From page 82...
... 82 FIGURE 6-1  Two examples of health literate, written information available at San Francisco General Hospital. SOURCE: Presented by Anne Kinderman on July 9, 2015.
From page 83...
... . Kinderman, collaborating with colleague Alicia Fernandez, also developed a curriculum for interpreters in palliative care that is designed to help professional health care interpreters negotiate these difficult conversations among patients, families, and health care providers.
From page 84...
... A FAITH-BASED MOVEMENT TO TRANSFORM HEALTH DISPARITIES4 Tyrone Pitts began the workshop's final presentation with the story of a man who insisted he was ill. After many years, he went to his family and 4  Thissection is based on the presentation by Reverend Tyrone Pitts, co-chair of the Interfaith and Diversity Workgroup at the Coalition to Transform Advanced Care, Ecumenical Officer and General Secretary Emeritus of the Progressive National Baptist Convention, and President and Chief Executive Officer of Bridges International LLC, and the statements are not endorsed or verified by the Academies.
From page 85...
... Several years later, he died, but before he died he had his tombstone engraved to read, "I told you I was sick." This story, said Pitts, highlights the reality that individuals who deal with issues of palliative care and advance directive face. This man insisted that he was sick, but his family did not believe him.
From page 86...
... The Coalition to Transform Advanced Care (C-TAC) was formed to close the gap between what people want and what they get in advanced illness.
From page 87...
... In response to the messages heard in the listening sessions, C-TAC launched a Community Action Project with health systems and community organizations around the country, including pilot projects in Alameda County in California, Detroit, the District of Columbia, and Rhode Island. Each of these pilot projects, explained Pitts, is bringing together health plans, health organizations, and community members, including clergy and other navigators, with the objectives of fostering partnerships between health systems and faith community organizations to fill critical gaps in care delivery, give each partner tools and knowledge, and help extend existing advanced illness management programs to reach underserved people.
From page 88...
... He ended his presentation with the comment that this is not a financial issue, but one of capacity and working together. The problem, he said, lies in the disconnection between what faith communities are doing and what health care systems are doing.
From page 89...
... Pinderhughes said that Banner Health has just started working with various community organizations, particularly senior centers that already have connections with and provide services to the elderly who need help. Kinderman admitted that San Francisco General currently does a terrible job of involving patients in planning.
From page 90...
... She asked Pinderhughes and Lustbader if they are beginning to show that the services they provide are producing savings that offset the costs of those services, and if they had ideas on how she and her colleagues at the Agency for Healthcare Research and Quality might think about measures of quality for those services given that there is the unfortunate financial incentive to stint on care or engage in gate keeping to reduce financial risk. Lustbader replied that ProHEALTH Care Associates has relations with payers to deliver home-based palliative care for a per member per month rate and that there are several metrics they must meet, including admissions per thousand members.
From page 91...
... What has to happen, he said, is all communities of faith must take an active role in first handling the crisis and then be transformative, which goes right to the heart of the literacy conversation. Grant noted that in her work as a palliative care nurse practitioner, she has had many amazing experiences in which clergy addressed health literacy issues.
From page 92...
... Another observation was that there were people in the institutions who did not look like those they were servicing, and so C-TAC has begun to talk about diversity within the institutional structures that are ministering to people. "The health profession is not a service, it is a ministry," said Pitts, and in that regard, health care institutions need to begin a dialog with clergy and others in the community to talk about issues of language, health literacy, and need, and to build programs that are beneficial to all.
From page 93...
... I can partner with patients and align around where their values are," she said. As a closing comment to the discussion, Freeman applauded P ­ inderhughes's personal approach to addressing inequities and then asked his white colleagues to challenge themselves to address implicit bias, to ask themselves to think about the baggage they bring to the table.


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