Dr. Chino welcomes Dr. Yael Schenker to discuss a new clinical trial testing the best way of engaging patients with Advance Care Planning (ACP), the process of understanding personal values, life goals, and medical care preferences so that patient wishes are honored at end-of-life. TRANSCRIPT Dr. Fumiko Chino: Hello, and welcome to Put Into Practice, the podcast for the JCO Oncology Practice. I am Dr. Fumiko Chino, an Associate Professor in Radiation Oncology at MD Anderson Cancer Center with a research focus on access, affordability, and equity. Care delivery goals for the critically ill, including those with cancer, have shifted towards a patient-centered framework. Advance care planning (ACP) is the process of understanding and sharing personal values, life goals, and medical care preferences so that patient wishes are honored at the end of life. Despite growing evidence of the benefits of these discussions, documentation of advance directives remains low, with some studies showing less than half of people with advanced cancer have a living will or health care power of attorney. I am happy to welcome a guest today to discuss a new clinical trial evaluating the best way of engaging patients with advance care planning. Dr. Yael Schenker, MD, MAS, FAAHPM, is a Professor of Medicine with tenure and the Director of the Palliative Research Center at the University of Pittsburgh and the UPMC Hillman Cancer Center. She is also a practicing Palliative Medicine Physician at UPMC. Her research focuses on improving quality of life in serious illness with a particular focus on palliative care delivery models. She is the first author of the JCO OP manuscript, "Facilitated Versus Patient-Directed Advance Care Planning Among Patients With Advanced Cancer: A Randomized Clinical Trial," which was published earlier this year. Our full disclosures are available in the transcript of this episode, and we have already agreed to go by our first names for the podcast. Yael, it's wonderful to speak to you today. Dr. Yael Schenker: Thank you so much for having me, Fumiko. I am such an admirer of you and your work. It's really an honor to be here. Dr. Fumiko Chino: I am excited for our discussion. Do you mind starting us off with just a little history about how you got interested in palliative care and what the field looked like when you were in training and your early career? For example, the term "death panels" from 2009 still really haunts many of us interested in advance care planning. Dr. Yael Schenker: Yes, that is actually when I started in the field, and I remember those days well. I had a windy path to medicine, and by the time I got to medical school, I was really drawn to taking care of the sickest, most complicated patients. I loved all of the life stuff, the stuff that was not on the diagnosis list but had such an impact on how people navigated a serious illness and what was important to them. I remember going to a funeral in the Western Addition in San Francisco for one of my first primary care patients when I was a resident and just being blown away by this incredible community, this church filled with people, this vibrant life that I had only caught tiny glimpses of in our 15 minute clinic appointments. I caught the research bug during residency, and I started really thinking about how we were communicating with patients and how we figured out what was important to them. At that time, I was headed towards a career as a primary care doc, but I stayed at UCSF to do a general medicine research fellowship, and I wrote my first grant about serious illness communication to the National Palliative Care Research Center. I got that grant, and I figured if I was going to be a palliative care researcher, I should really be a palliative care physician also. Amazingly, back then, and this was 2010, you could grandfather in and take the palliative care boards without doing a palliative care fellowship. So I did that. I started practicing palliative care clinically, and I really dove into this question of how do we make sure that people have a voice in the care they are receiving near the end of life? And how do we make sure that care aligns with what matters most to them? Those questions have more than filled 15 years as a faculty member at the University of Pittsburgh, and it has been such a joy to watch the field take off and, in the last five years, to lead a research center focused on improving the quality of serious illness care. Dr. Fumiko Chino: That's a great history. I wanted to ask just a quick follow up question on that. How were we doing this before? Because I know you have spent the last 15 years of your career improving how we do advance care planning conversations and trying to figure out the evidence-based solutions for making change. But how were we doing it before? Dr. Yael Schenker: Yeah, so advance care planning has an interesting history, dating back to the 1990s and the Patient Self-Determination Act and the sort of requirement that we let people know that they have a right to make decisions about their care. And I think for a long time, we sort of thought of advance care planning as a form, and we would hand people a form and sort of check a box and say that we were done. I think we have done so much since that initial history to really understand what it means to involve people and to give people a voice in their care and to view advance care planning as a process, not a check box. Dr. Fumiko Chino: That is so helpful, again, to practice truly patient-centered care. Now, this trial, the "Patient-Centered and Efficacious Advance Care Planning in Cancer," or PEACe, compares the effects of facilitated advance care planning with a trained nurse versus a patient-directed program delivered via a website and written materials. Do you mind giving us an overview of this randomized study and what you found? Dr. Yael Schenker: Absolutely. And just to note that advance care planning continues to be a source of some confusion, both for clinicians and for the public. So, like we said, advance care planning is defined as the process that supports people to understand and share their personal values, life goals, and preferences for future medical care. And it is now widely recognized as a strategy that improves the patient-centeredness of care. And failure to deliver patient-centered care near the end of life, meaning care that people want, remains a key shortcoming of our cancer care delivery system. So advance care planning is guideline-recommended for patients with advanced cancer, but there are a lot of different ways to do advance care planning. And these approaches vary quite a bit in terms of cost, complexity, who is involved. So the question that really motivated this study was, which way is best? And like you said, we compared two different ways to do advance care planning: patient-directed advance care planning, in which we gave patients written and web-based tools to complete the steps of advance care planning on their own time, at their own pace, and a more resource intensive approach, facilitated advance care planning, in which patients had structured advance care planning conversations with a trained facilitator. This was a single blind, patient level, randomized comparative effectiveness trial. We enrolled 400 patients with advanced cancer. Our primary outcome was engagement in advance care planning, which we measured using a validated scale called the ACP Engagement Survey. And I will note that we chose this as our primary outcome because it measures a lot of different advance care planning behaviors, reflecting this updated definition of advance care planning as a complex process rather than just completing a form. And so this scale includes subscales related to self-efficacy or confidence and readiness to do things like choose a decision-maker, talk with your decision-maker about what is important, sign official papers, and talk with your doctor. And so what did we find? At 12 weeks, patients in the facilitated advance care planning group had higher engagement, and this was a difference that was both statistically and clinically significant in terms of behavior change. They were also more likely to have completed a living will or advance directive at 12 weeks, and this was also a significant difference. 75% of participants in the facilitated group had completed a living will or advance directive at 12 weeks versus 61% in the patient-directed group. And another way to say that is that at 12 weeks, the odds of having a living will or advance directive for patients in the facilitated group were over two times the odds of having a living will or advance directive for patients in the patient-directed group. There were no significant differences between groups in the odds of having an advance care planning conversation with family or friends or with physicians. And, notably, all advance care planning behaviors did increase from baseline in both groups. Dr. Fumiko Chino: I really love the trial, which is a randomized trial, obviously our highest level of evidence, but also it is a pretty-straightforward trial, which is, if you do not need to use the more resource intensive modality, which is the trained nurse facilitators, if just giving people some information is going to work, then show that. But sadly, no, it really- having a trained facilitator really does seem to increase uptake. So one point that was made in the intro of the study, and I think you just made, which is the field of ACP has moved beyond the sole goal of legalistic forms to encompass several different patient-facing approaches. So again, like what you said, it is beyond just checking a box. The goal of identifying the optimal strategies for facilitating patients to have these important discussions with their families and providers is so important. As you said, there was no difference in the trial groups between discussing with friends and family with their physicians, but there were far higher rates, almost 90%, of having those end of life wishes discussed with families. But actually less than half had this type of discussion with their physicians. So why do you think that is? Dr. Yael Schenker: Yeah, that is a really important observation. Thank you for bringing it up. It is something we have thought a lot about. And first, I want to say that discussions with family are important in and of themselves. We know that a lot of the work of advance care planning happens at home, outside the medical setting. And we know how important and valuable those discussions with family can be. Earlier in my career, I led some qualitative work interviewing family members who were in the midst of making decisions for a loved one in the ICU. And in those moments, which often involve significant emotional distress or conflict, we heard again and again about the value of being able to think back on those conversations with family and understand what was most important to their loved one. So conversations with family and friends are important. The second thing I would say is that, yes, conversations with physicians remained relatively infrequent at 12 weeks. Just under 50% reported an ACP conversation with their physician in the facilitated group versus 40% in the patient-directed group. And this is, in some ways, not surprising given that neither intervention included a physician-directed component. So we were not asking oncologists to do anything as part of this study. And I will say, with the caveat being that I am not an oncologist, but there are lots of barriers to having these conversations. The simplest being practical barriers like not having enough time within a standard oncology clinic visit. We also know that many physicians worry that advance care planning conversations will take away a patient's hope. And that is something our research group has also looked at. We actually did not find an association between advance care planning conversations and decreased patient hopes. If anything, these conversations seem to increase patient hopes, but that worry remains. And so I think we have more work to do figuring out how to integrate advance care planning with clinical care. And of course, the holy grail of advance care planning is how do we improve goal concordant care at the end of life? And that is something we are still working on. Dr. Fumiko Chino: What you said, that the physician logistical barriers, but that also sometimes physicians, us as oncologists, that we have this fear that is actually not founded in reality that somehow we are kind of stripping hope, whereas I agree, I have actually read multiple research output that say these conversations are necessary and they do not squelch the doctor-patient relationship, and they actually help patients actually prepare better for the future. Now, there were two recent JCO OP articles focused on palliative care and advance care planning. A quality improvement project found that a proactive social work-led initiative did not appear to increase palliative care referrals or ACP documentation in a community out-based clinic. And then a different study, a claims-based analysis compared end of life care for Medicare Advantage versus traditional Medicare, and it found that participants on MA plans were less likely to have an ACP claim despite having generally less intense health care utilization at the end of life. I think both of these studies point to a sort of a larger, more complex environment around optimal end of life care, including the diverse barriers from things like limitations of the provider workload and to health insurance. Do you have a gestalt about how to address these types of system barriers in improving ACP in cancer? Is it a funding problem? Do you think it is a staffing problem? Is it a communication problem, an education problem? Is it all of the above? Dr. Yael Schenker: I would say yes, and- I think, first, it is so important to have work like the QI project you mentioned looking at these barriers in real clinical contexts, as well as work like the claims analysis you mentioned including patients with different insurance types. The real world is a very complicated place, and what works in a tightly controlled research environment may look very different when you broaden the patient population or when you do not have the same support for the interventionist's time, for example. I think social workers are a great example of this. It is very hard to protect social work time for palliative care interventions. Their time is worth its weight in gold. They are not available in many settings. Historically, they are non-billing providers. So I think in order to address system barriers, we really need to look at system resources and drill down on implementation challenges. What is available? What are the barriers? Where are the disconnects? Before we sort of throw money or staff at a problem, I think we have to understand the context. And that is where implementation science is so helpful. We have this evidence-based thing that we are not doing. Why not? This is something our team is starting to work on, and I think we are seeing some interesting system-level approaches to facilitate advance care planning being tried at different cancer centers around the country. So that is exciting. You asked for my gestalt, which is that we need both top down and bottom up strategies. I think top down, system level strategies make advance care planning easier and the default for clinicians. Bottom up strategies give patients and families the tools they need to feel more comfortable having these conversations. So the next step for our team is to identify and prioritize these strategies, and I am very lucky to have some amazing implementation science colleagues to help think through this work. Dr. Fumiko Chino: In the discussion of your study, you bring up the idea of a stepped care approach to ACP, i.e., doing a less resource intense option first and then advancing to a higher intensity treatment as necessary. And this model was presented at last year's ASCO, published in JAMA. Dr. Temel and her team showed that a stepped palliative care plan led to fewer palliative care visits without diminishing the benefits for patient quality of life. And this method struck me as really feasible for ACP given how your study finds that even though less than half of those in the patient-directed group actually visited the website, those that did spent almost an hour on it. So the ones that actually engaged in the patient-directed, it seemed like they actually used the tool. So I would love your take on that. Dr. Yael Schenker: Yes, I absolutely agree, and the study you referenced by Jennifer Temel, Joe Greer, and colleagues is an excellent example of a stepped care model that used fewer resources but was non-inferior to a more traditional resource intensive approach. I love that study because I think we have to be thinking about palliative care as a limited resource, and resources for advance care planning are no different. For some patients and families, the opportunity to engage with a high-quality resource like the written and web-based materials from Prepare for Your Care, which is what we used in the patient-directed arm, is an amazing and highly successful approach to advance care planning. For others, there are just too many barriers to engagement, and the fact that only 43% of participants viewed the website when left to do so on their own in their own homes is telling. I think a facilitator can help overcome those barriers, and we heard a lot about the value of those relationships and the emotional support the facilitator provided. That may be very helpful for a subset of patients. So I think it is always challenging to individualize care, but we are seeing personalized medicine in so many contexts, and I am really excited to see more individualized, strategic, personalized approaches to advance care planning. Dr. Fumiko Chino: I like the idea that personalized medicine continues through end of life discussions, which is that the approach you use for one person may not work for someone else. And this is what is difficult about all of medicine, right, is that it is not one size fits all, and we really need to be tailoring our approaches and our methods to the patient and the family in front of us. We have really incredible but also expensive new anticancer treatments that are coming on the market, it sounds like every week at this point. And I think the balance is sometimes very challenging to find for our more complex patients with advanced cancer. Dr. Yael Schenker: It is getting more and more interesting. I think the field of palliative care, the need for palliative care is only growing as people are living longer and longer with advanced cancer or many other kinds of serious illness. So when experts have looked at kind of what is in the syringe of palliative care, it is really about giving people the skills to cope with the uncertainty, the worries of serious illness, helping people to live well. Symptom management is a key part of what we do, but it is also about walking alongside people as prognostic awareness deepens, as priorities shift, being attuned to what people need and what matters most. So it is an absolute privilege to do this work in partnership with oncologists and amidst this rapid proliferation of treatment options you mentioned. One of the things I really love about palliative care is that it is constantly evolving, and I am constantly learning. Dr. Fumiko Chino: It strikes me that there are so many things that we can do to improve quality and sometimes quantity of life that are beyond just a medication. You know, we just had the CHALLENGE trial which showed that exercise can prolong quantity of life. I know the groundbreaking study with people with lung cancer that palliative care, it seems to extend quantity of life. And so this kind of dual goal of trying to do everything that we can to truly practice patient-centered care is just an excellent framework for improving the quality of care that we provide. Dr. Yael Schenker: I agree. Dr. Fumiko Chino: Thank you so much for this great conversation today. Many thanks to both Dr. Schenker as well as our listeners. You will find the links to the papers that we discussed in the transcript of this episode. If you value the insights that you hear on the JCO OP Put Into Practice podcast, please take a moment to rate, review, and subscribe wherever you get your podcasts. I hope you will join us next month for Put Into Practice's next episode. Until then, please take care of yourself. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.     Conflicts of Interest   Fumiko Chino Employment Company: MD Anderson Cancer Center   Consulting or Advisory Role Company: Institute for Value Based Medicine   Research Funding Company: Merck   Yael Schenker Honoraria Company: UpToDate Company: Emmi Solutions  

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