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Reflections on the Workshop
To end the workshop, Bernard Rosof asked the Roundtable members for their reflections on the main points they heard during the workshop. Michael Villaire from the Institute for Healthcare Advancement remarked that the health literacy component of the day’s discussions was not as robust as he would have liked, which he thought was a result of the large chasm that exists today between palliative care and health literacy and the many steps that will have to be taken to marry these two fields. The first step, he said, is to increase awareness of palliative care and what it is. “Before you can understand it, you have to know that it exists,” said Villaire. Another step has to be overcoming what he called “the odd culture around death in this country” that makes it such a difficult subject to broach. Another challenge arises from the number of people who have never had health care that now have coverage under the Affordable Care Act and who are even further behind in terms of health literacy and understanding what palliative care is. There also is the issue of access to palliative care and addressing the social justice component of palliative care, he added.
In contrast to Villaire, Cindy Brach was not troubled by the fact that many of the speakers did not use the words health literacy in their presentations. To her, the presentations and discussion spoke to the part of health literacy that has to do with reducing demands on patients around navigating the health care system and coordinating care, as well as with addressing the matter of comprehension under difficult circumstances. “The model of care that we imagine for people with advanced illness is a health literate model,” she said. Brach then noted that her agency, the Agency for
Healthcare Research and Quality, works on error reporting and patient safety, and to her the difficulties that Beverly Alves recounted—the failure of the do-not-resuscitate order to be in the system, the delays in getting medications at the hospital, the need to continually renew the prescription for pain medication—are errors that should be collected and recorded and counted as failures in the effort to create a culture of safety in the nation’s health care organizations. In her opinion, part of the culture shift that needs to occur is to embrace these kinds of errors and work to correct and prevent them. Brach also said she agreed with Robert Arnold’s view that palliative care should not be a distinct concept, that it is really about good health care quality.
Margaret Loveland emphasized the need for training physicians in the art of communicating about end-of-life issues with patients and families, given how hard they are to have at times of crisis. Part of that training, she added, should include how to work as part of a health care team, and another component should emphasize the need to acknowledge that patients have a spiritual life. Winston Wong said that he believes that the roles of language and culture are most accentuated at the sentinel moments of life, such as birth, marriage, and death. “I think all the aspects around how to communicate effectively become distilled at those critical moments,” said Wong.
He also noted that there is a political component that needs to be acknowledged regarding discussions about palliative care, as illustrated by the opportunistic use of the term death panels several years ago to sway public opinion. “There is a point where we have to make sure that people throughout our communities really understand the nature of these conversations and that there is no deviant way to frame these discussions,” said Wong. “If we agree on what the nature of those discussions are, we will have made a contribution toward improving health and medicine, and dying and living, for people throughout our communities.” Wilma Alvarado-Little agreed with that statement and the importance of recognizing the political component of discussions about palliative care.
Marin Allen from the Office of the Director of the National Institutes of Health voiced her concern that health literacy is thought of as a tactic mentioned along with education, rather than an integral part of the interaction between patient and the health care team, and that treating it as such will not provide the necessary cross-pollination across medical fields. She then added two footnotes. The first concerned the use of interpreters for deaf individuals and their need to be comfortable interpreting medical information for the patient. “It is really the patient that needs to be comfortable with the reputation and language use of the interpreter in deaf settings,” explained Allen. Alvarado-Little, who occasionally serves as a spoken language interpreter, added that much of the information given to
patients and family members is highly nuanced and that cultural issues play an important role at the intersection of health literacy and palliative care.
Allen’s second footnote was on the use of teach-back. She recommended the work of Dean Schillinger at the University of California, San Francisco, who has developed a system that is easy for physicians to use based on the larger communication strategy of feedback (Schenker et al., 2011). In response to a comment from Rosof, Allen said that using the word person instead of patient was a good idea.
Terri Ann Parnell from Health Literacy Partners remarked that the presentations far exceeded her expectations, and she thought incorporating the thoughts of both the family and the spiritual community broadens the spectrum of the Roundtable’s work. One of the strong points for her was the value of having health care providers taking time for self-reflection and looking for unconscious bias that enters into conversations with patients. Robert Logan from the National Library of Medicine noted that several of the presentations argued convincingly that home visitation and community settings provide enormous opportunities to deliver and assess health literacy interventions. He also was impressed with the work showing how home visitation affects health and wellness, quality of life, and health outcomes. From her perspective as a nurse scientist who does informatics research, Suzanne Bakken from Columbia University commented on the gaps that exist in the technological support that could help with clinical decision making and helping consumers better understand the decisions they face.
Alicia Fernandez from San Francisco General Hospital and the University of California, San Francisco, commended the speakers and said she valued the many examples of successful programs that were presented at the workshop. At the same time, she was struck by how poorly prepared the field is to grapple with the increasing fragmented system of care for chronic disease that exists today and the fact that the burden for care is shifting even further to patients and caretakers. Fernandez then made three small comments about unintended consequences. The first was that while palliative care undoubtedly improves care for individual patients, it may at the same time lessen the involvement of the physician in care for those patients. A second unintended consequence results from the fact that once a patient is referred to hospice, insurance will not pay for the patient to go back to the hospital. Perhaps this restriction will be removed as the system begins paying for palliative services instead of hospice, she said. The third unintended consequence is the increasing burden that palliative care can place on caretakers with low health literacy.
The message that Kim Parson from Humana’s Innovation Center got from the workshop is the need to remember that this is about the patient’s and family’s journey, not that of the health care provider, and how important it is to understand where patients are in their journey. This is par-
ticularly true, she said, for patients with chronic diseases and multiple conditions that they may have been dealing with for years. She also commented that cost transparency is an important issue for many patients because they worry about the cost of care and the burden that might place on their families and caregivers. Ruth Parker agreed that cost transparency was important. Indeed, she said that there is a wonderful opportunity to think about how to include discussions of cost in the conversation about palliative care, both in terms of how to have that conversation with caregivers as it relates to making choices about care options and with regard to health care costs in the United States.
Laurie Myers from Merck & Co., Inc., noted the importance of recognizing that everyone, regardless of their level of health literacy, knows everything they need to know about their goals and values. The responsibility for getting that information and using it to inform shared decision making rests solely with the health care system. She also commented on the importance of making sure that patients or family members not only have a seat at the table but a voice at the table in team meetings, and that the table should also have a place for pharmacists and medical assistants. Myers seconded the idea that all doctors, nurses, pharmacists, and medical assistants should be trained to use the same language, which she thought could help decrease stress and anxiety among patients and caregivers, and also voiced support for not only talking about pain medications but also antianxiety medications. One question that she had was how to handle family members who think their loved one is giving up when the patient comes to understand and accept that additional treatment does not make sense.
Terry Davis from the Louisiana State University Health Sciences Center in Shreveport wondered how patients get a consistent message when so many people are involved in their care, including all of the members of their families, their faith communities, and their social networks. “Are we talking to each other? Are we using the same language” Are we giving conflicting information?” asked Davis. Though the goal is to put the patient at the center of care, the medical system does not always give them the power to be the team leader and determine who gives them information and how they receive it, which she thought would leave them feeling alone and overwhelmed. Rosof noted a book by retired General Stanley McChrystal, Team of Teams (McChrystal et al., 2015), deals with this issue of team leader in a thoughtful, interesting manner.
Christopher Dezii from Bristol-Myers Squibb emphasized the need for accountability, to follow through on all of the points that the speakers and discussion raised so palliative care is at the table when discussing how to create a patient-centered experience and develop performance and quality measures. He suspected, for example, that the health care institutions that Alves dealt with overall had high-quality grades, which suggests that the
current measures of quality are unacceptable. “Are we okay with quality as it is, or is the present situation unacceptable?” asked Dezii. “If it is unacceptable, then we have to set up the parameters to reflect that.”
Michael Paasche-Orlow commented how the topic of palliative care exposes the cultural struggle that exists between those in health care who care about communication and those who are at war against death. He also remarked how political this topic is, how many social justice issues are at stake, and how complex it is. “I think that is one of the reasons this is such a great topic for the Roundtable on Health Literacy is because it is quite complicated for patients and families, and we can help improve that situation,” said Paasche-Orlow. He also noted the lack of data about palliative care and in the end-of-life space in general.
Lindsey Robinson, a full-time pediatric dentist, appreciated the personal stories and the input of the spiritual counselors. “Their voice reminds us that at the end of the day we are tending to the broken hearts of human beings.” She then commented on Diane Meier’s idea that integrative palliative care is about creating a medical counterculture given that the current system is not set up to work in a collaborative or integrated way. This is particularly true, she said, of dentistry, which worked hard historically to stay out of Medicare and remain separate from the health care system in general. Dentistry, however, is slowly realizing the fault of that “do our own thing” philosophy, and the fact that the American Dental Association has funded her seat on the Roundtable shows the commitment of the dental community to participating in culture change. She noted that oral health plays a large part in overall health, particularly when it comes to chemotherapy, which can produce severe oral health impacts, and she looks forward to identifying opportunities for the dental community to work in this space.
What struck Jennifer Dillaha is the great dysfunction that exists in the health care system, which made her wonder whether the development of palliative care as a discipline is really a response to the low health literacy of the health care system. “It seems that it is a way to shepherd people with advanced illness through the end of their life because the system’s health literacy is so low,” she said. Catina O’Leary from Health Literacy Missouri commented on how the issues presented at this workshop were more deeply personal, political, and oriented to social justice than is usually the case, and she commended the organizing committee for putting this program together. In particular, she was excited by Richard Freeman’s message of how important it is for this group to use its voice to drive change so everyone has access to appropriate care, and by the involvement of community members beyond just those with academic credentials who usually participate in National Academies of Sciences, Engineering, and Medicine roundtables.
Steven Rush thanked everyone who presented and who organized this workshop. In particular, he appreciated the focus on provider issues as opposed to patient deficits and on the concept of patient-centered care as it relates to health communication. He noted that he and Dana Lustbader will be able to take the lessons from this workshop and apply them to the work they are doing with the various advisory councils on which they serve. Rosof then asked Freeman to make the final comment on the day.
Freeman said that he recognizes in the reality of humanity and everything that he does that not everyone approaches life from a deist’s view, and he truly honors that reality. Nonetheless, he wanted to close the workshop by connecting everyone’s heart in a moment of prayer. “This is a spiritual journey, and every one of you that do it are a spiritual being,” said Freeman, who asked everyone to look at themselves and say, “I am spirit, and everything I do touches someone else’s spirit.” He then offered a prayer:
“By all that is holy, whether we call you Elohim, whether we call you God, whether we call you Yahweh, whether we call you Allah, whether we call you the great spirit, by every name that we hold dear, we come to you now to infuse us with your power. Give us the grace to walk with people who are going through the valleys of the shadows of death. Help us to walk with those who are in pain. Help us to reach out our hearts and our hands to minister in the only way that we know how, how we have been trained. But we also ask that you would challenge us, challenge us to grow to a higher level, to a different place so that we can be even better in the journey that we are in. Now, as we get ready to leave this place, as we go with some fears, some learning, some trepidation, even some prodding, we ask that you be gentle with our learning, be gentle with us as we become better at what we do. We ask these things in your holy and righteous name. Amen.” Rosof then adjourned the workshop.
