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Proceedings: Proceedings published by the National Academies of Sciences, Engineering, and Medicine chronicle the presentations and discussions at a workshop, symposium, or other event convened by the National Academies. The statements and opinions contained in proceedings are those of the participants and are not endorsed by other participants, the planning committee, or the National Academies. As a follow up to the discussion paper Ten Attributes of a Health Literate Health Care Organization , participants met to examine what is known about implementation of the attributes of a health literate health care organization and to create a network of health literacy implementers who can share information about health literacy innovations and problem solving.
Hospice use is increasing, but the length of stay in hospice has been falling NHPCO, , and transitions in the last 3 days of life are on the rise Teno et al. Among the consequences of this gap, said Sanders, are inadequate symptom control and poor quality of life for patients and their caregivers. The program also addresses the gap between what is known about how to provide high-quality end-of-life care and what the health care enterprise delivers. More specifically, said Sanders, it is well documented that discussions to clarify goals, values, and priorities for care—advance care planning discussions—improve clinical outcomes as measured by more goal-concordant care, less aggressive care, more and earlier hospice care, and higher patient satisfaction and family well-being Brinkman-Stoppelenburg et al.
At the same time, he added, there is a connection between physician burnout, poor self-efficacy, and caring for patients with serious illness Meier et al. 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. 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? Sanders considers it problematic for several reasons, the first of which is that the POLST paradigm was created without clear thinking about how to train clinicians to have these discussions.
Continuing with this analogy, Sanders said the cart had its own problems, namely that advance directives are a contested strategy for delivering goal-concordant care in that they do not always guarantee that patient wishes are followed Hickman et al. Culture What illness? What is heard? What Relationship? Factors that widen that gap and that are relevant to health literacy include education, socioeconomic position, and race. Assuming that power differentials are evident in the process of advance care planning, one strategy for creating safe space is to give control to the patient.
The approach that Sanders and his colleagues use is to prepare patients to have this discussion by asking their permission to have it and then assessing and honoring their information preferences.
Organizational Health Literacy: Review of Theories, Frameworks, Guides, and Implementation Issues
The latter stems from multiple factors that include mistrust in both clinicians and the health care system, decision making informed by religious principles, family decision-making styles, and health literacy Nath et al. Sanders said that it is hard to know the full impact of health literacy on advance care planning Melhado and Bushy, , 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.
The key challenge he and his colleagues face is to think about how an intervention developed in a place that serves a predominantly white, middle- and upper-middle-class-population can affect other important U. Their approach, he explained, has been to conduct a series of focus groups aimed at identifying high-risk barriers to participation in conversations such as these, gaining feedback about the language and content of the Ariadne Labs Serious Illness Conversation Guide, and then modifying the guide so it can be implemented in a culturally sensitive manner. He and colleagues have learned a number of important lessons through this process.
For the most part, he said, the space in which goals of care are discussed with African Americans with serious illness is in the hospital during a crisis. These interactions are emotionally traumatic for families and add to a collective historical trauma felt acutely by members of the African American community, heightening senses of stigma and mistrust. In addition, the relationship between the patient and family and members of the clinical team, and in particular the physician, is paramount to the sense of safety for patients and families in approaching the end of life.
As far as the guide itself, the questions have been easily understood and acceptable to the African American participants in the focus group.
Understanding Cultural and Linguistic Barriers to Health Literacy
In conclusion, Sanders said that it is more useful to think of health literacy as an emergent phenomenon rather than as something that is or is not possessed by an individual. 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.
Shortly after Joe passed, she wrote a letter to Albany Medical Center describing what she had been doing for her husband. A friend of hers, who was the head of rehabilitation services at a local facility, read the letter and told Alves that she had been providing palliative care.
She repeated Sanders comments about the failure of the turnkey approach to advance care planning and asked Smith and Sanders to speak about the lack of fit between patient and family needs and standard approaches to end-of-life care. He said that while he appreciates the cart-before-the-horse analogy, he also knows how difficult these questions are for a health care provider such as himself to ask a patient.
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For example, when he asks patients if they want dialysis, he first has to spend time talking about what dialysis is and what it entails. The same is true for ventilation. What is important to consider, too, is that the culture of the institution factors into how these questions are asked.
He noted that one of his postdoctoral fellows studied how DNR decisions were made at three institutions in the United States and one in the United Kingdom Dzeng et al. At the UK hospital, the physician makes the decision and informs the patient, which Smith called the paternalistic model of care. At the University of Washington in Seattle, that decision is a shared one made in partnership with the patient. There, the physicians ask patients about their desires, the quality-of-life issues they find important, and their understanding of their situation. The physicians explain what it means to be on a ventilator and the odds that resuscitation will enable patients to survive.
In his experience, the chances of resuscitation being successful is close to zero, and he believes patients have a right to know that to help them make better decisions. Smith also noted a recent paper showing that the number of people making durable power of attorney assignments increased from 52 percent in to 74 percent in , but that there was no change in the use of living wills Narang et al.
That is just a start, said Smith, but it means nothing unless the patient and decision maker have actually discussed what the patient wants. On a practical note, he agreed that the POLST form is often little more than an exercise in checking boxes, but that it does force there to be some discussion about end-of-life decisions.
He then noted that he and his colleagues have seen in their studies that a good discussion between clinicians and patients can be psychologically beneficial and enable patients to go home and have fruitful discussions with their families. He added that when health literacy issues are acute and patients are forced to make concrete care decisions to check boxes on a form, they feel lost.
Given that possibility, she asked Sanders if he had any evidence that health literacy is an emergent rather than a personal characteristic. Sanders responded that this notion came from the IOM report and that his experience supports that idea.
He recounted how a patient he had spoken to the day before the workshop said that the questions in the guide were good because they forced the doctor to speak like a human rather than a doctor and to truly understand what the doctor was saying. Harris agreed that was a reasonable view and asked Sanders how the conversation guide takes that idea into account. Sanders said that a major component of the conversation guide is a set of nonthreatening questions designed to create the safe space need to have a thoughtful and thorough discussion. Clinicians, for example, are encouraged to tell their patients that no decision has to be made on the basis of a single conversation.
She then asked the panelists if there were any considerations being made for groups of patients and family members whose primary language is not English and for the deaf and hardof- hearing communities. Before answering the question, Smith recounted a recent call his team received from a patient with liver failure who knew she was very sick and wanted to know how much time she had. The nurse practitioner did a wonderful job talking to the patient about her prognosis and that there was no way to say with certainty how much time she had to live, but after Smith returned to his office he received a frantic call from a staff member who said the family claims the patient does not want to know her prognosis and not to tell her.
He then said that his team has projects in Belize, Saudi Arabia, and Tajikistan, three places with three very different cultures. In Tajikistan, for example, he has seen a surgeon who has just operated on someone with inoperable gastric cancer tell the patient he has an ulcer, to take certain drugs, that he would be okay and then go tell the family that he has weeks to live. Again, he had learned to ask patients about their understanding of their situation and how they want to get their medical information.
He also noted that in Baltimore, where he has now worked for 3. 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. She felt that patients will only answer those questions and talk to someone about these issues if they know the person. He would like to see primary care physicians kept in the loop and receive functional status updates as a mandatory part of care, noting that he can teach anybody in 5 minutes how to write a onepage summary to all care team members in the EMR.
He then told of a study Dow et al. However, the oncologists were only aware that 5 of the 75 patients had advance directives and only twice did the oncologists even mention advance directives.
It turns out, he said, that for some patients and families it is easier to discuss what is going to happen to them with the referring physician than it is with the oncologist.