The Challenges and Opportunities of Advance Care Planning Proceedings of a Workshop (2021) / Chapter Skim
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Proceedings of a Workshop
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process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care" (Sudore et al., 2017)
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. To better understand the challenges and opportunities for ACP, acknowledge and highlight divergent viewpoints, and examine what is empirically known and not known about ACP and its outcomes, the National Academies of Sciences, Engineering, and Medicine's Roundtable on Quality Care for People with Serious Illness hosted a virtual public workshop, Advance Care Planning: Challenges and Opportunities, on October 26 and November 2, 2020.
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(Heyland) • Continue working toward culture change that integrates ACP and health care planning in the same way that legal planning and financial planning have already been well integrated into everyday life.
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• Use more sophisticated decision aids to elicit authentic value statements and support decision making throughout the course of serious illness. (Heyland)
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(Gosline) • Scale training to ensure consistent, high-quality ACP conversa tions, use data science to identify patients to prioritize, define the target population (e.g., patients with serious illness and frailty)
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"So many of us have unfortunately seen patients who have had to make decisions about life-sustaining treatments, oftentimes with little advance notice, and this has heightened concern about the need for advance care planning," he said. In his opening comments, Robert Arnold from the University of Pittsburgh Medical Center predicted that vigorous differences of opinion would come to light during the course of the two webinars.
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THE PARADOX OF ADVANCE CARE PLANNING Lived Experiences with Advance Care Planning The first session of the workshop opened with Maureen Stuart and Wyvonia Woods Harris, both volunteers with the National Patient Advocate Foundation (NPAF) , sharing their lived experiences of caring for
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However, her father did not want to discuss his other preferences or wishes for end-of-life care with any of his children, nor did he want to complete an advance directive. Stuart explained that her father's oncologist tried to communicate with his primary care doctor about preferences for end-of-life care, but it became clear that the choices were to go to a hospital or rely on the family to provide care, because palliative care and hospice services were not accessible where he lived in rural northern California.
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An Ethical Framework: From Advance Directives to Advance Care Planning Bernard Lo, president emeritus of The Greenwall Foundation, began by describing how on a winter day in 1983, Nancy Cruzan skidded off a Missouri highway, and suffered a serious brain injury when her car crashed. Though resuscitated, Cruzan never regained consciousness and was in a persistent vegetative state.
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. Lo explained that the ruling led to a national focus on advance directives, and many states passed laws authorizing an individual to appoint a health care proxy.
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Even when ACP goes well, said Lo, decisions are difficult, and unanticipated decisions will still need to be made. The Complexities of Advance Care Planning: What Are We Even Talking About?
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has distinct components that guide conversations with patients. Sudore noted that the majority of the conversations she has with individuals, both as a geriatrics primary care physician and as an inpatient palliative care physician, involve values, wishes, and preferences, as listed under the Advance Care Planning section of Figure 1, rather than conversations about consent for a specific treatment.
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"Millions of Americans do not have access to clinicians, health systems, or [insurance] policies that would support access to trained clinicians who could walk people step-by-step through the ACP process," said Sudore, "and given the large amount of justified mistrust, some communities will only do ACP outside the clinical setting with their families and friends." Given this complexity, Sudore further explained, it may not be reason able to expect an ACP intervention targeted to one or a few of these stakeholders to be able to positively affect all outcomes and solve all of the problems of the nation's broken health care system.
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. Similar programs include Advance Care Planning Decisions,10 the Plan Well Guide,11 and community-based tools, such as those offered by the Conversation Project.12 Sudore explained that research shows that patients want to talk to their clinicians about ACP, they expect health care providers to initiate ACP conversations, and they view it as a way to prepare surrogates and decrease their decisional burden.
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Specifically, the review revealed increased patient and surrogate satisfaction with communication and medical care and decreased surrogate and clinician distress, outcomes known to be important to patients. Despite these findings, the review found little or no evidence to support improved health status outcomes (such as quality of life)
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On the other hand, in some situations involving the patients who understand what is about to happen to them, doing what the patient said makes sense. 13 Additional information is available at https://law.justia.com/cases/new-hampshire/ supreme-court/2020/2018-0701.html (accessed December 9, 2020)
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She added that she and her colleagues are now attempting to include surrogate outcomes in their research studies. INTERPRETING THE EVIDENCE BASE FOR ADVANCE CARE PLANNING What Is the Evidence and Why Does It Matter?
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And for many people, this is going to include choosing and preparing a trusted person to make decisions for them in the event that they lose decisional capacity." This is different, he said, from having real-time discussions about real-time decisions or in-the-moment discussions around goals of care either with patients or with proxies. "I think all of us would agree that it is critically important that we do this every single day, but that it is not advance care planning.
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That evidence, said Morrison, suggests that advance directives are a reasonable surrogate for a completed ACP discussion, be it for a treatment directive or designation of a health care proxy. He added that the prevalence of advance directives increased from 26 percent in 1993 to 37 percent in 2016, but in 2020 -- 30 years after the Patient SelfDetermination Act -- less than half of U.S.
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"We know that supply and demand influence the care that people receive in the setting of serious illness," he said, "and that [treatment decisions] are influenced by our societal capacity to support patient needs and are strongly influenced by regional cultures and practice patterns." Morrison remarked that continuing to invest in ACP is not benign and does have consequences.
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Perhaps we should be thinking about how to better guide surrogates through in-the-moment decision making and how to have real-time communication about real-time decisions rather than focusing our effort on something that, for the most part, just has not shown great benefit. How Clinical and Health Care Leaders Use Advance Care Planning Research Carole Montgomery, executive medical director of Respecting Choices, explained that she would not be speaking from the perspective of a researcher, but rather of a clinical care leader who is a consumer of the research on ACP.
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In that context, said Montgomery, the scoping review that Sudore discussed (McMahan et al., 2020) is an important body of work that adds to the evidence base for ACP and addresses the deficiencies of prior systematic reviews by including only RCTs from the past decade.
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For example, one study used the Respecting Choices intervention with HIVpositive urban adult populations and found that ACP improved treatment preference congruence between patients and their surrogates, an understanding that persisted even as the patients' treatment preferences changed (Lyon et al., 2020)
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Making Sense of the Evidence Daren Heyland, professor of internal medicine and critical care at the Queen's University School of Medicine in Kingston, Canada, began by noting that as a critical care clinician, he has witnessed a significant amount of suffering when people come into an intensive care environment ill prepared for decision making and ultimately do not always receive the care that is right for them. "If the goal of ACP is to try and increase person-centered care, increase goal-concordant care, or increase the process of communication in decision making around the use or non-use of life-sustaining treatments, I think we have a long way to go," said Heyland.
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To make such a determination, "we need to move to a higher degree of granularity or homogeneity that includes standardization about what works and what does not work." Heyland also expressed concern about the current definition and conceptual framework for ACP, given that planning for death under conditions of certainty is not the same as planning for serious illness under conditions of uncertainty. Additionally, he cautioned that decontextualized planning conversations can be equated with medical decisions.
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He also believed that the current ACP process violates legal provisions intended to protect the informed consent process, which is designed to explain risks, benefits, and possible outcomes as part of the thorough discussion that leads to shared decision making. Instead, he argued for focusing on better preparing patients and surrogate decision makers to make decisions in the moment, rather than using a document that has limited validity and clinical utility to make such decisions in advance (Heyland, 2020; Sudore and Fried, 2010)
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Compared to other ACP tools, their program, called the Plan Well Guide: • discriminates between planning for terminal care versus planning for serious illness, • explains how clinicians make medical decisions under conditions of uncertainty, • uses a constrained values clarification tool where respondents must pick between competing values, • uses grids to transparently connect stated values to respondent preferences for medical treatments during serious illness, and • provides a first-in-class decision aid on the different levels of care (Heyland et al., 2020)
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treatment decisions in advance for end-of-life care to an approach that aims to provide optimal, person-centered medical care for people with serious illness in situations of uncertainty about whether they are experiencing the end of life. Advance Care Planning Is a Right: A Medical–Legal Perspective The session's final speaker, Patricia Bomba, vice president and medical director of geriatrics at Excellus BlueCross BlueShield, began by thanking Stuart and Harris for providing important real-world context for the workshop speakers' presentations by sharing their lived experiences.
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. Bomba pointed out that virtually every state is now working on developing this type of program for those who might die in the next year, are living in a nursing home or receiving long-term services at 14 Additional information is available at https://compassionandsupport.org/advance-care planning/cccc (accessed December 10, 2020)
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: 1. Prepare for discussion • Understand the patient's health status, prognosis, and ability to consent • Retrieve completed advance directives • Determine decision maker and public health law legal requirements 2.
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"We know we need to choose a trusted person, foster culture change, build patient-centered systems, and establish metrics that are different for the general population regarding advance directives versus medical orders," said Bomba. "The bottom line is it is complex but it is right, and we ought to be measuring what matters most to patients and families." Discussion Discussion session moderator Susan E
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" Another research gap that Heyland identified is in the area of decision aids, noted Hickman. Heyland remarked that a growing body of work shows that these aids support people with serious illness, helping them make better decisions.
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Heyland clarified that what he and Morrison were arguing is that effort, energy, and further research should be devoted to better preparing people for in-the-moment clinical decisions and that having laypeople, even seriously ill people, make decisions in advance that are expected to be followed in the future risks leading to medical error. Bomba emphasized the importance of the ACP process and said those with serious illness and advanced frailty need to have the opportunity, before they lose capacity, to weigh in on the decisions regarding their endof-life care.
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Hickman, noting that Heyland had observed that terminally ill patients can make medical decisions in advance for future life-limiting complications in consultation with their clinicians, asked him if he sees a role for advance directives and POLST for people with life-limiting serious illness who are at risk of life-threatening clinical events. Noting that he did see a role, Heyland cautioned that the challenge is that those decisions are often made without the clinician who is involved in the actual in-the-moment decision making.
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She first thanked the two volunteers from NPAF, Stuart and Harris, who generously shared personal stories of their experiences caring for loved ones through the course of serious illness and the end of life. Hickman noted that although both women discussed ways in which the health care system had failed them, they concluded that proactive conversations about goals, values, and preferences, while difficult, are incredibly important.
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suggests positive outcomes in important areas, notably for decreased surrogate distress, an outcome that patients say is critically important to them. She noted that several of the panelists in this session argued that more research is direly needed in several areas: • supporting patients and developing authentic value statements; • using decision aids to support decision making in the course of serious illness; • implementation science that accounts for local context and tailors interventions to the resources available in a given setting; • informatics and online platforms, such as eMOLST, that can improve quality through standardized conversation elements, increased accessibility, and real-time updating; and • pragmatic trials that aim to conduct science in the real world to overcome barriers that frequently prevent successful clinical trial outcomes from being widely implemented.
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In closing, Hickman pointed out that the panelists agreed that moving the field forward requires identifying the outcomes that the ACP process can reasonably be expected to produce and evaluating interventions in realworld settings that account for the complexity of ACP. THINKING DIFFERENTLY ABOUT ADVANCE CARE PLANNING Flaws in Advance Care Planning Implementation and Evaluation Scott Halpern, director of the Palliative and Advanced Illness Research Center and the John M
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Halpern explained that he no longer holds that view, given that the past 5 years have produced highquality evidence in many domains supportive of serious illness care. He noted that the scoping review that Sudore presented (McMahan et al., 2020)
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"In many scenarios, they more commonly made choices to receive or not receive interventions that would put them into health states that they themselves had deemed equal to or worse than death," said Halpern. "This is a cautionary note for those who think that decision aids are going to be our way forward in improving advance care planning." In that same study, Halpern noted that he and his colleagues also asked seriously ill patients to identify whether a series of health states were equal to or worse than death (see Figure 4)
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In support of the first of these possibilities, Halpern cited a 2014 systematic review that found a direct relationship between people's level of serious illness and the stability of their end-of-life treatment preferences over time (Auriemma et al., 2014) : only 60 percent of older patients without any serious illness had stable preferences over time, while stability improved appreciably for individuals in more progressively ill cohorts.
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Advance Care Planning: Ethical Challenges Rebecca Dresser, Daniel Noyes Kirby Professor of Law emerita at the Washington University in St. Louis School of Law, noted that her remarks would focus on the complex patient populations that suffer from conditions in which cognitive and physical decline occurs over long periods, such as dementia.
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Promote a better understanding of the potential futures for those with serious illness.
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"Not everyone experiences the language and approaches c ommon to advance care planning similarly, and we think those differences are likely to have [been] magnified during this time of COVID," said Gosline.
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The self-assured action t akers (24 percent of the sample) , on the other hand, likely completed ACP documents because of cultural expectations and were not worried about a future serious illness.
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SOURCES: Anna Gosline presentation, November 2, 2020; Massachusetts Coalition for Serious Illness Care, 2019. people, asking them to highlight language that did or did not resonate with them and note any that was off-putting.
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Gosline shared that most people preferred the messages about controlling their care and demanding the right care, which she explained are not mutually exclusive and point to different conceptual elements among the processes that ACP comprises. Control, or conversations to clarify, emphasizes selecting a surrogate decision maker in the case of unexpected incapacity, while demanding the right care emphasized expectations and demands for shared decision making by the patient as part of the clini cal process.
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strongly toward providing intensive and resuscitative care unless or until someone says stop -- so the entire advent of advance care planning is arguably most pertinent to those who would like to set some limitations. But I think the concept of goal-concordant care recognizes that potentially there are virtues to thinking in advance that go in both directions, conceivably toward more or less aggres sive care, and tailoring the care received to the goals of the individual seems unambiguous and something we ought to be striving for.
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PRACTICAL STEPS TO MORE EFFECTIVE ADVANCE CARE PLANNING The Importance of Patients' and Families' Nonmedical Concerns Rebecca Kirch, executive vice president of policy and programs at NPAF, began the workshop's penultimate panel by explaining that her organization represents people with more than 600 different diagnoses and largely focuses on supporting the needs of the working poor. She spoke about what she called the "untold backstory" of the things that are on families' and patients' minds when they are confronting serious illness: insurance coverage, financial impairments that accompany the physical impairments resulting from illness, and household material hardships that are added on top of the diagnosis and the experience with making decisions about treatment.
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In contrast, Kirch explained, when her stepmother was diagnosed with colon cancer and Kirch arranged for a palliative care visit, the palliative care provider only focused on completing the advance directive, which was not what the family needed at the time. Rather, Kirch pointed out, it was what the health system wanted.
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Later, when the family arrives, clinicians are told that the patient would not have wanted these interventions. Childers explained that the patient often had a POLST form from a previous admission, had written an advance directive, or had otherwise made their wishes known, but the ED clinicians had no access to these documented decisions.
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The Health System Perspective on Practical Steps to More Effective Advance Care Planning Nina Ross O'Connor, chief of palliative care at Penn Medicine, presented an approach to building a system to create effective ACP at the health system level. In thinking about this problem, she and her colleagues
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. She noted that it notifies their clinician with a text on the day they are coming in for an appointment that asks them to consider having a serious illness conversation.
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Once a health system decides which patients will be its initial target group and what outcome it will target, it has an ethical obligation to make sure that those conversations are of high quality, that it is a safe experience for patients to talk about these things, and that what patients and families experience is consistent across the system, said O'Connor. With many ways to do this, O'Connor's system partnered with Ariadne Labs22 to use the serious illness conversation guide.
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However, ACP often medicalizes people's conditions so "when we try to make those two things fit, there is nothing but dissonance and a lack of receptivity," said Kirch. "The opportunity is to restore that faith and trust in patients who have expertise in their lived experience and help guide the care planning conversations that happen." O'Connor added that while it may not seem that way to patients and their families, clinicians do get quite nervous and anxious about having
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She commented that getting to clinicians early in their training as medical pro fessionals can help them see this as a normal part of medical care. H aving trainees do a palliative care rotation can help, too, said Childers.
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Lum noted the difficulty in measuring the quality of conversations and asked if the panelists used strategies beyond getting patient testimonials. O'Connor said her institution uses a common documentation template that includes discussion of prognosis and specific care treatment decisions, as well as places to document things such as what gives a particular patient strength and what the patient's greatest worries and priorities are.
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"Our faith in this illusion of control about what happens to people with serious illness causes us to focus on things that are really not at the top of the priority list for actual patients and families." Meier emphasized that for patients and families, priority items are avoiding bankruptcy, paying for their children's education, putting food on 27 Maslow's hierarchy of needs is a motivational theory in psychology comprising a five tier model of human needs, often depicted as hierarchical levels within a pyramid (McLeod, 2020)
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"The patient's problems are in the dark parking lot, and we are trying to address their problems under the streetlight that is advance care planning," she said. Her final thought was that health care professionals have a larger humanistic vision, and the field needs to embrace that vision and push for a reallocation of health care resources to meet actual human needs.
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"There are no data to support that, and it worries me to have entities with financial goals leading the charge for better advance care planning," said Meier. "Stop putting forward what we do as a way to reduce health care spending." She added that linking ACP to lower spending only reinforces the public's belief that those who focus on ACP are advocating for interests other than the patient's.
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We are all human beings who are going to have to deal with the issues of making decisions about what we want or do not want as we approach life's end, and it has to be an approach that speaks to not just serious illness and the end of life but empowering people to know that what they want for themselves counts. Arnold, citing the current fascination with personalized medicine, asked Solomon how to make the changes that Meier, Perrilliat, and Brody called for in a society that seems to want timely and personalized care yet is interested in every scientific advance.
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I think it has deformed the practice of medicine as we essentially ignore these huge social factors that determine the outcomes of more than 80 percent of our patients," said Meier. Meier shared that she strongly believes that supporting clinicians to have meaningful conversations with people living with serious illness and their families is valuable because the relationship is valuable, because the relationship creates trust, because the relationship helps the person and their family feel valued as fellow human beings….
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2019. Advance care planning claims and health care utilization among seriously ill patients near the end of life.
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2010. The impact of advance care planning on end of life care in elderly patients: Randomised controlled trial.
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2018. Overview of systematic reviews of advance care planning: Summary of evidence and global lessons.
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2013. Advance care planning beyond advance directives: Perspectives from patients and surrogates.
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2018b. Engaging diverse English- and Spanish-speaking older adults in advance care planning: The PREPARE randomized clinical trial.
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2015. Barriers to goals of care discussions with seriously ill hospitalized patients and their families: A multicenter survey of clinicians.
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