Understanding Hospice Care, with Karan Jatwani, MBBS, and Amy Case, MD, FAAHPM
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In this Meaningful Conversations podcast, Dr. Karan Jatwani talks to Dr. Amy Case about what people with cancer should know about hospice care, including the difference between palliative and supportive care and hospice care, who is eligible to enroll in hospice care, and the types of support available for people receiving hospice care and their family and caregivers.
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. Jatwani is a Medical Oncology Fellow at Roswell Park Comprehensive Cancer Center.
Dr. Case is the Lee Foundation Endowed Chair of the Department of Palliative and Supportive Care at Roswell Park Comprehensive Cancer Center, and Professor of Medicine at the Jacobs School of Medicine and Biomedical Sciences of the University at Buffalo.
View disclosures for Dr. Jatwani and Dr. Case at Cancer.Net.
Dr. Jatwani: Hi, everyone. My name is Karan Jatwani. I'm one of the 3-year fellows at Roswell Park Comprehensive Cancer Center. I have finished my palliative care fellowship from Memorial Sloan Kettering Cancer Center. And I am interested in the integration of oncology as well as palliative care, and that is where I envision my future career to be. And it's my pleasure to be involved in a podcast with Cancer.Net and looking forward to it.
Dr. Case: Hello. My name is Amy Case, and I'm the chair of the Department of Supportive and Palliative Care here at Roswell Park Comprehensive Cancer Center, and we're in Buffalo, New York. So I appreciate being invited to speak today. And we also have a fellowship that we run here and a pretty comprehensive department with 8 divisions that include palliative, social work, psychiatry, psychology, spiritual care, bioethics, and geriatrics, and also employee resilience. So we have a lot of kind of passion projects we work on in our supportive care department.
Dr. Jatwani: Thank you so much, Dr. Case, for joining us today. I think I've always admired your work. And just to start off, just for our listeners and our audience, if you can just give us a brief idea of what palliative care is, I think that would be the best segue to enhance the discussion.
Dr. Jatwani: So “to palliate” means to make feel better. And when I talk to patients about what it is that we do, I talk about how we take care of the whole person, which includes the physical symptom management, the emotional support, which could include psychiatry, psychology, or social work support of the emotional piece. And then also the spiritual support, which often we work as a team. In order to be palliative care, you actually need to be a team. It can't just be one physician, for example, doing palliative. You need to work as a team. So generally, a core team consists of a physician, a nurse, a chaplain, a spiritual care professional, and a social worker at its core. But sometimes it can be a nurse practitioner providing that or other specialists helping on that team.
Dr. Jatwani: I think one of the key questions that always arise with the patients is, as soon as you talk about palliative care, patients start equating it to death. How do you make sure that the patients you're interacting with, how do you differentiate it with them, and how do you relieve that anxiety whenever the patient hears “palliative care”?
Dr. Case: So no matter what you call the work that we do, there will always be a stigma. So if we change the name to yellow banana, people would be afraid of yellow bananas, right? So I think that the word hospice has-- I joke that it's kind of like a 4-letter word type of situation. We call it “the H word.” Sometimes patients are really fearful to hear that word. And even now, palliative has adopted this stigma. So generally, what I do is I kind of say that it's focused on quality of life. The main goal is to help people feel better, live a better quality of life, to get through their cancer treatments. And I also educate them that people who receive palliative care tend to have better outcomes. Patient-reported outcome metrics are better. So patients often have a prolonged survival. They may be able to tolerate their cancer treatment better and get through those treatments. And that generally, I would say, is something that they're happy to hear.
That's something that they're usually, "Yeah, sign me up for that." When we start with somebody-- we spend an hour with every patient for a new visit. When I start with them, they're really skeptical. Oftentimes, they're looking at me mistrustfully, like, "What is this?" And by the end of the visit, they say, "Where has this been from the beginning of my cancer journey? And why am I only getting this now? This was the best interaction I've had at this organization." And it's because we give them kind of what we call a “wrap-around care,” which is almost like a big hug. We use a lot of skills that include empathy. And with our communication, we often spend a lot of time listening. And I think people really walk out feeling heard. Even if you can't solve it or cure it, you can discuss things that can just make them feel that you were there for them and you listened. And that is very powerful.
Dr. Jatwani: I 100% agree. I mean, that has been my sort of experience as well during my fellowship. I took a lot of those learnings with me when I see my patients. But also, I think coming from an oncology standpoint, I can definitely now understand that I have been at fault when I have not given that palliative blanket that you were talking about at different times. And so my question is, when can patients ask for palliative care? And we'll discuss “the H word,” as you mentioned at the beginning. So we'll discuss with that as well. But when should patients undergoing cancer treatment, when should they ask for involvement of palliative care, or they should advocate for themselves or even the caregivers should advocate?
Dr. Case: Yeah. So I think that generally, palliative care, the beauty of palliative care is that it doesn't really have a time limit. Someone can ask for it anytime. And often, we encourage people right from the beginning. So there's people who may be looking for that extra added support right from the beginning. And so we usually encourage oncologists and the oncology teams to start those discussions themselves.
Dr. Jatwani: And I think at this point of time, I would like to definitely ask you. I think you mentioned “the H word” in the beginning. So can we discuss a little bit more about what is hospice care?
Dr. Case: So palliative care is provided on a trajectory. So it can be provided anytime, even for survivors, for people who are earlier in their diagnosis. But hospice has a timeline on it because it's actually a Medicare benefit that it's like almost like an insurance benefit that kicks in, but the government pays for the patient's care. And so in order to enroll or sign up for hospice, a patient has to have certain criteria in order to meet that. In order to get those things paid for. And so hospices have to—generally, it's when a patient has a life expectancy of 6 months or less, and they have decided that the cancer treatment, meaning chemotherapy, radiation in most cases, immunotherapy, the burden of that is higher than the benefit.
Most of the patients who see us in palliative are still getting their cancer treatment, and we're helping them walk the journey with them through their treatment, helping them feel better, starting those conversations. And then we do something called a transition to hospice. So many of the patients we see in palliative end up transitioning to hospice. How is palliative care different than hospice? How is hospice different than palliative care? They're very similar. The philosophy of care and the way it's provided is almost exact, meaning that it's a team-based approach made up of physical, emotional, and spiritual support for the patient provided by a team. Although in palliative care, many times that's done in a clinic or an inpatient setting. There are home palliative programs that exist. We have one here at Roswell as well. But hospice, 80% of the time, is done at home. Because generally, when people prefer to pass away and we talk to them, where do they want to be at the end of their life? I'd say 95% of people do want to be at home if that's feasible. The biggest barrier that they are wor