Health Literacy and Palliative Care Workshop Summary (2016) / Chapter Skim
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3 Interpersonal Communication
3 Interpersonal Communication
Pages 17-40
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From page 17... ...
Thomas Smith, Director of Palliative Care for Johns Hopkins Medicine and the Hopkins' Sidney Kimmel Comprehensive Cancer Center, then spoke about the challenges physicians face in communicating prognosis to patients. Justin Sanders, Research Fellow with the Serious Illness Care Program at Ariadne Labs, Instructor in Medicine at Harvard Medical School, and an attending physician in the Psychosocial Oncology and Palliative Care department at the Dana-Farber Cancer Institute and the Brigham and Women's Hospital, concluded the presentations by describing how health literacy hits into a scalable intervention to improve serious illness care.
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From page 18... ...
scan, which revealed a mass on Joe's pancreas and led to that fateful October phone call and what became a less-than-optimal experience with the health care system. "From the moment we learned of the mass to the day Joe passed on, we were confronted and confounded by a medical system that was u ncoordinated and unable to deal effectively with what became Joe's excruciating pain, our anxiety, stress, and impending loss," said Alves.
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From page 19... ...
"The analogy I use is it should have been a ballet, but instead there were many great ballroom dancers." Albany Medical Center, she added, did not have a palliative care program then and still does not nearly 9 years later. She remembers Joe being a wonderful patient who did his best to help those who were helping him.
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From page 20... ...
"It is inhumane." Along with intense pain, Joe was highly anxious, yet he was never referred to a pain management specialist or given adequate medication for his anxiety. Alves noted that shortly after her husband died, a psychiatrist told her that a living will should request medications to reduce pain and anxiety because the dying process can itself produce anxiety.
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From page 21... ...
"I felt like he was just tossing Joe away." At that point, her plan was to place Joe in a new hospice facility in her county for a few days until she could connect with a home health care planner. The day before his planned move, a hospice nurse visited him, saw how badly he was suffering, and concluded that the staff at Albany Medical Center had no idea on how to ease Joe's pain.
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From page 22... ...
Literacy, added Smith, is different from health literacy, which is the degree to which an individual has a capacity to obtain, communicate, process, and understand basic health information and services to make appropriate health decisions. According to 2003 statistics, some 98 million incidents of poor outcomes, additional hospitalizations, lower compliance, higher mortality, and reduced use of hospice resulted from health illiteracy.
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From page 23... ...
in particular got everybody's attention, Smith noted. This trial randomized usual care versus usual care plus one palliative care visit per month for 151 newly diagnosed non-small-cell lung cancer patients.
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From page 24... ...
, and a study involving patients with dyspnea who received integrated palliative care and respiratory care compared to the usual respiratory care found that palliative care reduced the chances
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From page 25... ...
The subject of prognosis never comes up again for most patients, he said. The same data set showed that the chances of having inaccurate prognostic awareness increased in Latinos, African Americans, and Asian Americans.
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From page 26... ...
About one-third of these materials require university level literacy skills for full patient comprehension. "End-of-life patient edu cation materials should be revised for average adult comprehension to help informed decision making and to aid in closing the gap in health literacy," said Smith.
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From page 27... ...
. "We want physicians to bring up palliative care when the cancer starts to grow, when heart failure starts to get a little worse, when diabetes starts to cause more vascular complications." Smith is now working with all of the providers at Johns Hopkins Medicine to provide a research-based palliative care communication tattoo that would go on the forearm of every patient with a serious illness (Morris et al., 2012)
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From page 28... ...
28 HEALTH LITERACY AND PALLIATIVE CARE Set trigger points for Hospice PC referral: life InformaƟon Visit: Hospice AcƟvaƟon: ending illness, any effusion, pain >8, 3-6 month expected 30 days before neuropathic pain survival, not 3 days death Palliative Care Clinical Effort Bereavement Curative Care Diagnosis Disease Course Death Appoint someone in the Progressive Disease: Let hospice do office to have Trigger points for bereavement: survival discussions about rediscussion: prognosis, of remaining spouses is advance direcƟves, goals of treatment, higher and there is power of medical planning for the future, much less caregiver aƩorney, hospice not just curable/not distress informaƟon visit, use of curable hospice as best pracƟce FIGURE 3-4 Modifying practice patterns to improve patient outcomes. NOTE: PC = palliative care.
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From page 29... ...
"I don't think many oncologists are wired this way," said Smith. SERIOUS ILLNESS COMMUNICATION PROGRAM3 The topic of palliative care and health literacy is compelling to Justin Sanders not only because of the work he does in this area but because the field continues to grapple with trying to improve comprehension of what palliative care means and who it benefits.
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From page 30... ...
What happens in most health care settings, however, is that these conversations occur too infrequently or too late in the course of disease progression, particularly in communities that suffer disproportionately from low health literacy. In addition, added Sanders, clinicians are not that good at having these conversations.
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From page 31... ...
The heart of the process, Sanders explained, is the Serious Illness Conversation Guide, which prompts the clinician to ask the patient two questions: (1) What is your understanding of where you are now with your illness?
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From page 32... ...
"That is a health literacy issue." Thinking about health literacy as an emergent phenomena, one that emerges in a way that affects behaviors of both patient and physician, requires being acutely sensitive to the power dynamics that exist between two parties with different cultural, social, and educational backgrounds and how that dynamic affects the space in which discussions about palliative take place (see Figure 3-6)
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From page 33... ...
, in part because health literacy as measured in studies that have examined its role in advance care planning is somewhat unidimensional, typically by using measures such as grade reading level. "But if we think of health literacy as emerging from both the patients' experiences and their interaction with clinicians, then health literacy might be the central issue relating to achieving goal-concordant care," said Sanders.
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From page 34... ...
He added that for health literacy to emerge in a way that supports advance care planning and palliative care, the focus needs to move away from advance directives to scalable, translatable communication practices that help patients and clinicians enter a space together without fear of ineptitude on the part of clinicians or abandonment on the part of patients. DISCUSSION Diane Meier started the discussion by asking Alves for her reaction to the two presentations.
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From page 35... ...
Smith also noted a recent paper showing that the number of people making durable power of attorney assignments increased from 52 percent in 2000 to 74 percent in 2012, but that there was no change in the use of living wills (Narang et al., 2015) despite the fact that the only thing that makes a difference in end-of-life care is having a written living will or written advance directive.
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From page 36... ...
Department of Health and Human Services commented that Sanders's framing of health literacy as an emergent phenomenon has the potential to be powerful, but it also has the potential of challenging health care providers to take some responsibility for improving the health literacy of their patients. Given that possibility, she asked Sanders if he had any evidence that health literacy is an emergent rather than a personal characteristic.
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From page 37... ...
"Never make assumptions about what people want to know." Margaret Loveland, a pulmonologist from Merck & Co., Inc., who has treated patients with end-stage chronic obstructive pulmonary disease and diagnosed many lung cancers, commented on the lack of continuity of care that was apparent in the way Joe Alves was treated. She noted that when she diagnosed a patient with lung cancer and referred him or her for radiotherapy of chemotherapy, she always took the time to follow up with and ask the questions Smith gave.
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From page 38... ...
As an example, he cited Texas Oncology, where more 80 percent of the patients have advance care planning discussions and close to 90 percent of lung cancer patients go into hospice for up to 2 months. To achieve those laudable results, Texas Oncology has made it a best practice for someone on the health care team to discuss advance care practice on a patient's first three visits, with financial penalties for not meeting that standard.
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From page 39... ...
It is not an easy out to just assign that job to someone else." Ruth Parker from Emory University School of Medicine commented that she was placing her hopes for improvement on Sanders and his generation of physicians who can now use all of the health literacy tools that her generation of researchers has developed. She then asked specifically about the role that cost transparency and people's ability to understand the cost of care factor into decision making with regard to end-of-life care, noting that the leading cause of personal bankruptcy is medical debt.
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From page 40... ...
"We are going to have to have these cost discussions right up front with people, no ifs, ands, or buts about it." In wrapping up this session, Bernard Rosof said that what he heard from speakers so far was that every member of the health care team should be trained to ask patients about what is most important to them, not only in palliative care situations but in every setting. He also heard that physicians do not want patients to think they are abandoning them and that trust and competency are core issues.
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