Advanced Cancer Care Planning, with Richard T. Lee, MD, FASCO, Tara Sanft, MD, and Biren Saraiya, MD

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In this Meaningful Conversations podcast, Dr. Richard Lee talks to Dr. Tara Sanft and Dr. Biren Saraiya about what people with advanced cancer should know, including the value of palliative and supportive care and ways to talk with their families and healthcare teams about their health care wishes. Meaningful Conversations is a Cancer.Net blog and podcast series that describes the important discussions people may need to have with their providers, caregivers, and loved ones during cancer and offers ways to help navigate these conversations. Dr. Lee is a Clinical Professor in the Departments of Supportive Care Medicine and Medical Oncology at City of Hope Comprehensive Cancer Center and serves as the Medical Director of the Integrative Medicine Program. He is also the 2023 Cancer.Net Associate Editor for Palliative Care. Dr. Sanft is a medical oncologist and Chief Patient Experience Officer at Smilow Cancer Hospital, the Medical Director of the Yale Survivorship Clinic, and Associate Professor of Medicine in Medical Oncology at Yale School of Medicine. Dr. Saraiya is a medical oncologist at Rutgers Cancer Institute and Associate Professor of Medicine in the Division of Medical Oncology, Solid Tumor Section at the Rutgers Robert Wood Johnson Medical School. Both Dr. Sanft and Dr. Biren are members of the 2023 Cancer.Net Advisory Panel for Palliative and Supportive Care. View disclosures for Dr. Lee, Dr. Sanft, and Dr. Saraiya at Cancer.Net. Dr. Lee: Hi, my name is Richard Lee. I'm a clinical professor here at City of Hope and also the Cherng Family Director's Chair for the Center for Integrative Oncology. I'm really happy to be here today and talking about the topic of advanced care planning. And I'll have Dr. Tara Sanft and also Dr. Biren Saraiya introduce themselves as well. Dr. Sanft: Thanks, Dr. Lee. I'm Tara Sanft. I'm a breast medical oncologist at Yale Cancer Center and Smilow Cancer Hospital in New Haven, Connecticut. I am board certified in medical oncology and hospice and palliative medicine. I do direct the survivorship clinic, which is an appropriate place for advanced care planning that we can touch on today. I'm really happy to be here. Dr. Saraiya: Hi, my name is Biren Saraiya. I'm a medical oncologist focused on GU medical oncology and also a board-certified palliative care physician. I'm at Rutgers Cancer Institute of New Jersey. My focus is on decision-making. My research interest in decision-making and end-of-life planning for patients with serious medical illnesses. And I do a lot of teaching on this topic at our medical school. And I'm also glad to be here, and I do not have any relevant financial disclosures. Dr. Lee: Thank you so much for both of you for being here. I should also add, I don't have any relevant financial or disclosures, conflicts of interest. Dr. Sanft: Thank you. I'd like to add that I do not either. Thanks for the reminder. Dr. Lee: Yes. Thank you both. And so this is a really important topic that we deal with when we see patients, especially those with more advanced cancer. Could you talk about when we say advanced cancer, what does that really mean? Dr. Saraiya: When I think of advanced cancer, it is either cancer that has come back, recurred, or that is no longer curable, no longer something that we can't completely get rid of. So many times, it is what we call stage four cancer. Each cancer is a bit different. So it's a general rule of thumb, but not necessarily intelligible for every single cancer. But that's what I mean when I say advanced cancers to my patients. Dr. Lee: How about yourself, Dr. Sanft? Do you use a similar concept, or is it a little bit different? Dr. Sanft: I agree with all that's been said. Advanced cancer typically involves the spread of the cancer to other sites outside of the primary site. And the strategy tends to be a chronic long-term management strategy rather than curative treatment, although not always. And as our science becomes more advanced and sophisticated, these terms can apply to people with all different tumor types and locations of involvement, and that's really exciting. But in general, advanced cancer is very serious and can often be life-threatening and needs to be dealt with always. Dr. Lee: And that leads into the next question, which is, if it's not possible to completely cure the cancer, does that mean there's no treatment available for these patients? Dr. Sanft: Absolutely not. Does it mean that there is no treatment? Even when anti-cancer treatment may not help the situation, there is treatment. And I think as palliative care professionals, in addition to being medical oncologists, treating symptoms and treating suffering that comes with symptoms from cancer is always on the table from the time of diagnosis through the balance of life. And when a diagnosis comes through that is life-threatening or advanced or stage four, it is very common to pursue anti-cancer treatment, sometimes many different types of treatment. And it's very rare that someone with a new diagnosis of advanced cancer would not qualify for any anti-cancer treatment. Dr. Lee: Thank you. And moving along with that same concept, Dr. Saraiya, could you talk about what are the kinds of treatment options available to patients with advanced cancer? And then could you comment a little bit what Dr. Sanft was talking about, which is also there's anti-cancer treatments, but then there's also these treatments that help with quality of life and symptoms. And can they be coordinated together? Are we choosing one or the other? Dr. Saraiya: That's a great question. The way I think about this is I always want to focus on what's important for the person in front of me, what's important for the patient. And so even when there is no cure for the cancer, it is certainly treatable. And as Dr. Sanft pointed out, we have many treatments, many types of treatments. So they are delivered by someone like me or Dr. Sanft who are medical oncologists, but also by our colleagues in radiation and surgery and our colleagues in palliative medicine. So it depends on what the symptoms are; we can discuss how to best address it. And sometimes it requires radiation, short course of radiation. Sometimes that's the most effective thing. Sometimes it requires medicines that are by mouth or chemotherapy that are intravenous or by mouth or immunotherapy or different kinds of newer agents that we are using these days. So they can be delivered under the care of a medical oncologist. We can also have sometimes something that's very painful, and the surgeon can remove it. And that is also just as good of an option. So what we choose to do depends on what the objective is, what we are trying to accomplish. And to me, at any point in time I see a patient, every single person I meet with, my goal is how do I help them live better? What's important for the quality of life? And many times is what I do as a medical oncologist, many times it's just listening to them and talking to them and providing support, either myself or my staff or social work. And many times, it's my colleagues in palliative medicine who are helping me care for their symptoms such as pain, other symptoms that I may have a hard time addressing by myself. And so we call on their help when we can't address it. Dr. Lee: We've touched upon the topic of palliative care and supportive care, that terminology. And I'm wondering if you could expand on that so we have a common understanding. And how is that different than hospice care? Dr. Saraiya: This is how I explain to my patients and my students, which is to say, when I went to medicine and I asked my students this question, how many times do we actually cure cancer or cure anything, forget cancer, just anything? And the fact is that most times we don't cure many diseases. So things like high blood pressure, diabetes, high cholesterol, heart disease, liver disease. We don't cure things outside cancer as well. But what we do is we help patients live long and well for long periods of time. We focus on quality of life. And in essence, we are providing palliative care. So I define palliative care anything that helps patients live better or live well. Sometimes we can cure things as well. So many cancers are curable. But let's say you have extensive surgery for a cure of the cancer, but you have pain from the surgery. We certainly help give you pain medicines. That's palliative care. And so for me, palliative care is anything that we do to help alleviate patient's symptoms. It can be delivered by the surgeon who prescribes pain medicine postop, by radiation doctor, who helps with palliative radiation, by medical oncologists like myself and Dr. Sanft, who give medicines for nausea, vomiting, or other symptoms that either the treatments or the cancer itself is causing. When we need help of our colleagues who specialize in this is specialized palliative care. And some just call it supportive care. It's just a naming terminology. As long as we are helping patients live better, any intervention we make to me is palliative and supportive care. At a time when we agree, both patients and we agree that look, our focus is just on comfort. We are not going to focus on cancer anymore. And we're going to focus on just quality of life. That can be dealt with palliative care and hospice care. Hospice care is a very specific defined insurance benefit that requires certain certification. And that's the difference. So palliative is something required from day one, I meet a patient. It doesn't matter what they have until the end of their life. And sometimes even after that, caring for their loved ones after the patient has died is also palliation. Hospice care is a very small piece of that when we are just focused on end-of-life care. Dr. Lee: I appreciate that understanding. And I think it's a great point that you make that anyone can be providing palliative and supportive care. It doesn't take necessarily specialists, but different types of oncologists and other clinicians can be providing in addition to specialists. And Dr. Sanft, could you talk a little bit about this concept about after kind of after a patient may pass through hospice? Dr. Saraiya was mentioning about emotional and spiritual support. How can we help patients find that kind of support from diagnosis through the whole journey? Dr. Sanft: Yeah. I really think of palliative care as taking care of the whole patient. So not just treating the disease, but really addressing the emotional, spiritual, and other physical aspects that cancer and its treatment can impact on a human being that's undergoing this. And then, of course, the entire family unit. So the importance of addressing all of these aspects has been shown in so many different ways. And getting palliative care involved early can really impact how that individual does with their disease course. But it can also provide the structures around that spiritual and emotional health for the patient and their family from diagnosis throughout. And as Dr. Saraiya mentioned, when the time gets short and the end-of-life time is near, palliative care and hospice care in particular can really provide a lot of that bereavement support or that anticipation of loss. And then, of course, all the grief that comes after the loss. Dr. Lee: And could you expand a little bit in terms of if patients are starting to feel some emotional spiritual needs, how do they find help? Or what should they be doing in terms of connecting with their clinical team to get that type of support? Dr. Sanft: I would like to say first that I think part of it is on the medical team ourselves to ask patients. Our culture in general is not one that often openly discusses emotions. So what I teach the medical students is, for every visit, how are you doing with all of this emotionally? And that is a very open-ended question that patients can reflect on and share what they're comfortable sharing with their providers. Now, not all of us who are practicing learned these techniques when we were going through medical school. So your doctor and medical team might not automatically ask about your emotional health. So it is within a patient's right to say, "I would like to discuss with you how this is impacting me emotionally. Could I share that with you?" And really, I think most healthcare professionals come into this profession to help. And this is a very rewarding conversation to understand how this is impacting you and your family emotionally and then trying to get the support that is needed. Most cancer teams have social workers that are highly trained in assessing and counseling and helping patients get triaged into the help that they need, whether it be a support group or a psychologist or a psychiatrist or all of the above. Usually, social workers are embedded in many cancer teams. And if it's not a social worker, it may be another trained professional who can deal with this. But certainly, the medical team is the place to start and to really raise emotional health and spiritual health issues, even though we might not routinely be asking at every visit. Dr. Lee: Great points. And as we think about the journey and we talked a little bit about hospice care and kind of the end phases, sometimes patients fear losing their capacity or ability to really think clearly and maybe even make their own decisions. How can patients in these situations who are concerned about making their wishes known, how can they make sure that's communicated if there is a situation, maybe temporary, maybe longer lasting, which they have trouble with making medical decisions on their own? Dr. Saraiya? Dr. Saraiya: So I think, hopefully, all adults, all of us, have sort of thought about what-if scenarios in our lives, right? I think the thing I tell my patients that maybe there are three or four people in the room, and it's entirely possible, I'm not the one here tomorrow morning because accidents happen. And we certainly have seen that in our daily lives that suddenly things happen. So hopefully, every adult has thought about it. I always prompt my patients to tell me what they have thoughts about, what thoughts they have had. And I ensure that they have some sort of documentation. This is what we call advanced care planning documentation. Sometimes it's a living will, healthcare proxy. Different states might have different documentation. And many of them may have had it as part of their normal will or their sort of lawyers have drawn it up. I always ask them to sort of just tell me or discuss with me what they have written down. If they have not, I encourage them to have that conversation with their loved one. And there are two points. One, at least have had that thought, and the second, have the conversation. At no point in time do I want my patients' family, their loved ones, whether it's a spouse, whether it's a child, to have to answer the question, "What do you want for your loved one?" It's always about, "What will your loved one want for themselves?" And so that is my responsibility to facilitate the conversation to make sure that the patient and the family has had that discussion. Once they've had it, document it, whether it's an advanced care planning or many states like my state of New Jersey have specific forms for-- it's called Physician Orders For Life-Sustaining Therapies [POLST]. So especially in a setting with advanced care and we know we had the conversation. We can't cure this. It's about their quality of life, how they want to live. And patients have the absolute right to tell us and guide our decisions in what kind of treatments are acceptable and not acceptable. And that can only happen if you had the conversation. We have discussed things that are important for them. Are they okay being in a situation where they are not able to communicate? And whatever the what-if scenarios are for themselves, let's help figure those things out and make sure that we value their opinion, their autonomy at every single point by completing this advanced care planning documentation, and more importantly, having the conversation with loved ones so they can ask the question, what would your loved one want in the situation? Dr. Lee: Those are really good points. And I imagine a lot of individuals, a lot of patients, may not have had that conversation. And so what suggestions do you have for patients who are maybe newly diagnosed? They're just totally surprised by the diagnosis. Unfortunately, it may be, in some cases, it's advanced. Dr. Sanft, how would you suggest patients discuss this topic with their family and friends? Are there certain types of questions to be thinking about or certain topics? Dr. Sanft: Oftentimes, in the midst of a new diagnosis, the whirlwind of having that upside-down feeling is so strong that it's very difficult to then think out into the future. However, once the treatment plan is in place, that tends to be a time where things could sort of be evaluated and the horizon might seem a little bit more stable. And I think most patients are willing to admit that the gravity and the seriousness of the situation that's facing them, yet it's very difficult to really reflect on what might happen in the future or what you might want. I think it's really important from a patient perspective to think, "What are your most important priorities?" And that could be a good framework to start to think about if you aren't able to do these priorities, then what else would you want? So if being able to walk around your yard and enjoy the garden is a very high priority, even identifying that and understanding that can give you some framework, or talking about that with your loved one can give you some framework down the line if that becomes an impossibility. If interacting and talking with your children or your grandchildren is one of the highest priorities, if that ever became impaired, then how would that influence what you would want? So again, it doesn't have to be yes/no questions that you're answering, but it can really be an understanding of what brings you joy, what are the most important parts of your life, and if those were threatened, then how would you reevaluate the quality of your life? Dr. Lee: I think that's a good way of framing the priorities and thinking through that with your loved ones. And for Dr. Saraiya, next after they've had some of these discussions, what should they be asking you and Dr. Sanft as the healthcare providers and helping to guide along these important conversations around advanced care planning? Dr. Saraiya: I will answer that question, but I just want to sort of highlight what Dr. Sanft said is so important, which is really prioritizing and framing. And I think framing is so important. And to sort of put some of the other things Dr. Sanft talked about, the emotional and spiritual support, when someone walks into our office, many times they're really scared. And I take this opportunity to really sort of ask them important questions like, "What are your worries?" Which allows for them to emote a bit about what their worries are. And sometimes it's uncomfortable, right, because they're crying. They're worried about death and dying and what it means for the family. It's hard for the family. It makes a lot of us uncomfortable. But I think it's also very important. So I do take the opportunity early in my interaction with patients just to allow them to emote and just to process their worries. And sometimes I'm acknowledging their worries. Sometimes I'm telling them that those worries are maybe not reasonable, right? Sometimes people say, "Well, I'm going to die next month." And they know that's not the expectation. So they have worries that may be unreasonable. So I can help talk and address specific worries at that point in time. So we do have to-- and again, this is why we have a team. Many times, patients are not comfortable talking to me about some of their worries, but they are much more apt to talk to my social worker or my nurse or my infusion nurse where they spend hours at times. And they will tell them things that they may not tell me. They will talk about some of the side effects that they have that they won't tell me because they worry. This is my hypothesis and what the research shows. They worry that because I hold that key to that chemotherapy or that key to that treatment, that if this is something that I may not like, I might hold it. And so patients have this natural tendency to not tell me absolutely everything. That's why we have a team. We gather all the information to make sure that we sort of make the right decisions. Sometimes we do have to help patients and families facilitate their conversations to make sure that we address their worries, their fears, their emotions. And it can be done, as I said before, just by us as the primary oncology team or our palliative care team or our social workers or nurses. All of us provide a different role for each patient. And in some patient cases, it is me, and some patients sometimes it's my nurse or sometimes it's my infusion nurse, or sometimes my social worker. And sometimes I do need the help of my palliative care and hospice colleagues. Dr. Lee: And, Dr. Saraiya, coming back in terms of just guiding patients, are there certain questions you wish your patients might ask you in terms of helping to kind of navigate these difficult conversations? Dr. Saraiya: I think many patients have this one question, that they have a hard time asking, which is, what's the treatment goal? And many times, we talk about is this something that's treatable. And the answer is yes. That was one of the first questions we're asked. Is it treatable? But many times patients have a question is it curable? And if the answer is no, then what does that mean? Or even if the answer is yes. What does that mean? I think most of us in our lives think about what-if scenarios, but it's really hard to ask those questions. So what I advise and sometimes I facilitate this, but I encourage if you're listening to this, you're a patient, ask your oncologist, "Well, what does this actually mean for me?" And if you have those questions, ask them, "What if this happens? This is my worry. Can I just tell you what my worries are and address them?" And with the worries, also come my hopes. Here's what I'm hoping for. How can I get there? How can you help me get there? And as Dr. Sanft sort of talked about before, if I have a situation where someone tells me, "This is my hope”, but I can't do it, it's not likely, I will tell them. But I will also tell them what we can accomplish, what we can do. And so I think having that honest conversation and patients and families can talk amongst themselves, but also with us as clinical teams to just make sure that we, at all points in time, address and put them and their needs in the center of focus. Dr. Lee: Great questions. And Dr. Sanft, do you have any other questions you wish your patients would ask you in terms of helping to guide these challenging conversations? Dr. Sanft: It's helpful for patients to come at questions about what to expect directly with us. I think it's most helpful when patients say, "Here's the deal. I'm feeling fine right now, and I want to keep going as long as I feel fine. And I want you to offer me every line of treatment until I don't feel like it's going to be worth it anymore. And we can continue to talk about that. And we'll do this together. I will let you know when I'm ready." And that allows me to say, "Okay. I appreciate what you're saying, and I agree with this plan, and we're on the same page. And when I see signs that things aren't going well, I will tell you." And it sort of sets these expectations upfront that we are all on the same page. We all want the same things. And we commit to each other, "You're going to tell me when this gets too hard, and I'm going to tell you when I think that this isn't helping anymore." And so it allows for this open dialogue to continue throughout. Dr. Lee: Well, this has been a great conversation, and learned a lot and think about priorities. And I think you make a very good point. This is an ongoing discussion. It's not a single discussion you have, and then it's done. It's really an ongoing process through the whole journey. Do either of you have anything else to add in terms of helping patients who are addressing advanced care planning? Dr. Saraiya: My biggest ask or sort of consideration is all of us, as Dr. Sanft said in the beginning, all of us came into this to really sort of help. And that is still our primary goal. And good communication really facilitates that. And we have, as a medical team, have to sort of do, as Dr. Sanft pointed out, sort of explore a bit more and really address the concerns. At the same time, you also have to develop a language that we can all understand, both understand, patients and doctors. And I think that's the key work. And I think it's so important to have that partnership with our patients and our families to make sure that we are doing the attentive care that they deserve and they need. So I think having an honest conversation. One thing I always reflect on is for my patients, they may start in the beginning saying what's most important for me is-- and we are in Jersey so going to the casino on the weekends in Atlantic City. And that's the most important thing for me. But there comes a time when they say, "No, I've changed my mind. Most important thing is having the Friday night dinner with my family." And a few months later, maybe, “I've changed my mind. You know what's really important? If I can just sit in the patio on my rocking chair and enjoy that. Can you help me make those things happen?” I think having those conversations, being aware that we can change our minds, I think is absolutely fine. It's encouraged. And I think that's what we expect. Dr. Lee: Dr. Sanft? Dr. Sanft: Oh, I love that. I think I love that. I'm so glad that you brought that up. And the only thing I would add to that is if there are things that you know in your heart you absolutely would not want, telling it to someone, your partner, your family, your decision-makers, and your medical team will really help make sure that that does not come to fruition. So it can be scary to voice those things, but most of us have an idea of what we would never want to have happen. And saying that out loud and making sure that someone close to you, ideally, also your medical team, but certainly someone who's close to you understands what that line is. That can help decisions that need to be made in difficult times make sure that they honor, that they know that that was not what you ever wanted to have, and we can help make sure that that doesn't happen. Dr. Lee: Well, I want to thank both Dr. Saraiya and Dr. Sanft. This has been fantastic. I learned a lot myself in terms of communication and addressing advanced care planning. And I hope all of you listening also were able to learn some pearls of wisdom from both of them. I think your patients are very lucky to have both of you. Feel free to look at Cancer.Net if there's more questions and a lot of information around advanced cancer and treatments and advanced care planning and having these discussions. So thank you both again. And stay tuned for more podcasts on these important topics. ASCO: Thank you, Dr. Lee, Dr. Sanft, and Dr. Saraiya. Find more podcasts and blog posts in the Meaningful Conversations series at www.cancer.net/meaningfulconversations. Cancer.Net Podcasts feature trusted, timely, and compassionate information for people with cancer, survivors, and their families and loved ones. 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