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 worried about dying at home is that they worry about being a burden on their loved ones.

And so that's the way I frame those discussions, is that I ask them about what are the things that they're hoping for. What are the things that they're worried about? And when I find out, inevitably, like I said, it's probably the number 1 fear of people to be a burden on their loved ones. It's this wonderful thing that can reduce burden on family to help care for you and have you be at peace in the place that you wish to be.

Dr. Jatwani: I 100% agree. I think you framed it perfectly that if the discussions-- I think, as you said, they should happen at the right time point. And the other thing is I think they should happen often. They should not happen only once. They should happen at every juncture of time when the cancer care has sort of transitioned into going into the more risk and less benefit window. And that's a spectrum, as you mentioned. It does not have to happen only once, and the provider feels, “OK, I’ve done that discussion. Now I don’t have to do it again.”

Dr. Case: It’s a journey.

Dr. Jatwani: It’s a journey, yes.

Dr. Case: I think we always talk about a journey and that advanced care planning does not happen, excuse me, just once in the trajectory. It happens over multiple time points. And I call it “loosening the lid,” where the lid is often on really tight. There’s maybe often mistrust of the health care system. People are really scared. And you really need to give them that emotional support. And that’s why palliative is so beautiful because we provide them that wrap-around hug when they’re feeling at their most vulnerable. And then when they have comfort with us, then it’s much easier to discuss these really tough topics. And I think establishing rapport, getting to know them as a human being and who they are is extremely important. So, for example, my style is to start any medical visit with a social interaction and asking them about themselves socially. I say, “Let’s put the cancer aside. I want you to tell me about you. Tell me about your family. Tell me about the things that you enjoy doing for fun.” And they often laugh because they want to talk just about the cancer, right? They say, “I don’t have fun anymore.” And then I try to ask them about the things they did before they had cancer. And you see them light up, and you see the rapport being built, and you see the trust. And once you have those types of relationships, these discussions become much easier.

Dr. Jatwani: I agree. So just to transition a little bit more about hospice care, I think you talked about that this hospice care is a Medicare benefit. Can you tell our audience, is it only at home or is it available inpatient as well? And can you speak a little bit about that?

Dr. Case: Sure. So I mentioned before that generally, the majority of hospice care is preferred to be in the home, and really taking care of someone at the end of life actually can be less scary when you have the support of hospice. And so anyone who’s in the hospital where a discussion is had and then advanced care planning is done, and they say, “You know what? I don’t want to end up being on a ventilator. I’m going to elect to be a, “do not resuscitate or allow natural death.’" If that happens, I actually think it's almost imperative for hospice to also be consulted and offered. Because if you send someone home that is a “do not resuscitate” without those family support in place, the family will struggle. And so I think that it goes hand in hand. So dying at home goes hand in hand with having hospice in place. End of story. You need to have those supports in place. I do not think it will work out well for the family if you do not. And so there are rare circumstances where some physicians provide that support or home palliative can provide that support. But hospice really is the gold standard. So I'd say most of it is in the home.

But once someone enrolls in hospice, there is caveats where if a patient is having uncontrolled symptoms that are not managed by the nurses in the home and the physicians by phone or by home visit, that the patient may be able to be brought in to an inpatient hospice unit or a hospital. They can unelect—to come off of, or unenroll—in hospice. For example, they change their mind. They decide, oh, they fall they break a hip, OK? And hospice is not going to fund a non-cancer-related hip fracture repair. So they would have to unenroll from that Medicare benefit, hospice Medicare benefit, and enroll in a different part of their insurance. And it's very easy to enroll and unenroll. And so there are different parts of that Medicare benefit that pay for different things. And so if somebody gets a hip fracture, it doesn't mean they have to not have it repaired. I mean, so you adjust and unenroll them from hospice, get the hip repaired, and then enroll them back in the hospice. And so those types of things can totally be done. It doesn't mean the patient can never come back to the hospital. It doesn't mean they can't change their mind. It doesn't mean that if, say, they get pneumonia, that they can't have their pneumonia treated. So simple infections, like Clostridium difficile (C. diff), pneumonia, the hospice actually gives antibiotics.

They manage a lot of medical treatments like anticoagulation and things like that. So there are, depending on the hospice, leeway with some of those medical treatments. For example, total parenteral nutrition (TPN), percutaneous endoscopic gastrostomy (PEG) tubes, some of those things can be managed in hospice. However, if a PEG tube or a TPN is causing more burden, they will continue to have those discussions about, is this treatment in the best interest of comfort and quality of life? And so that's generally the philosophy of care. And so, yes, they can be inpatient. There can be coming back to the hospital. And there are hospice inpatient units kind of all over the country. Some cities may not have hospice inpatient units, and they have other things like something called a “comfort home,” where comfort homes are depending on the area, the region that you live. Comfort homes exist in some cities where they're run by volunteers, and a patient may not be able to be at home, but they can go to a comfort home. Sometimes hospice can be provided in an assisted living where a patient's home is actually not home, it's in a facility or it can be provided in a nursing home. However, I think there's a misperception that hospice pays for the room and board of those places, and that is actually not true.

So if someone needs a facility to live, then the family or the patient is on the hook, unfortunately, for the room and board. And so a lot of times, that delays discharge. So, for example, family does not want to take that patient home. They are not able to do that. The patient then needs a facility with hospice. The assumption is the hospice will pick up the bill of the facility. So that does not happen. But hospice covers all of the costs related to the care of the patient that's related to their hospice diagnosis.

Dr. Jatwani: For patients who are living alone, who are in the elderly population, who are undergoing cancer-directed treatments, for those patients, is hospice an option? If it is, because that is always a challenging area that we face, how do you deal with those patients?

Dr. Case: That's very challenging. Generally, we would call on social work and some of those specialties to help us figure out a support care network for that patient. And so often, you can actually recruit folks to take shifts coming in and checking on that patient. And so, yes, you can have hospice care for a patient who has a care-- generally, you need to have a caregiver who is around for that patient. Ideally, in an ideal world, there's somebody with that patient 24/7 when the patient is really ill. If the patient is pretty functional and they're on hospice, walking around, there may be some hours out of the day where they may not need someone with them. And really, we kind of determine that on a case-by-case basis. I would say it's not a door-shut situation that if someone lives alone, they could never have hospice. I would not say that. But in an ideal world, we do need to recruit someone to be there with the patient.

If someone has absolutely no one to be there with them during hours during the day, which I think is pretty rare, then generally, if the person is too ill to stay home alone, it'll be a conversation that you have with that patient that they may be moved to a higher level of care, meaning that they may need a skilled nursing facility with hospice on board coming in and checking on them. That's their new home, or they may need an assisted living. And there are some facilities that provide their own hospice, meaning that if you go to that facility, they have a team that's built into that facility that provides them the end-of-life care at the facility, and they don't allow in external hospices. So it kind of depends on your area where you're practicing and asking those questions as, "Do you have an external hospice or do you provide hospice services internally?" And those are questions I often steer patients to ask.

Dr. Jatwani: Just some parting thoughts on in terms of, as you said, hospice has a very selective criteria. And some patients might say, "How can you prognosticate me for living less than 6 months?" That's a challenging question that we often get. And I think you have answered it partly, that it's enroll “on and off switch” kind of situation. But what if a patient starts feeling much, much better on hospice and they feel that they want to come back and get cancer-directed treatment, how does palliative care and hospice care come into that domain?

Dr. Case: Prognostication, when a physician is asked to prognosticate a patient, we call it “the art of prognostication” because you can't always look it up in a textbook and get the right answer. And what one physician may determine is a prognosis for a patient, another one may give a different one. Because we look at the same things, but a lot of times, there's a clinician estimate that comes into it that is really one of those, you put a bunch of facts together and you come up with what we call an estimate. And so sometimes, we may be correct. Sometimes, we may underestimate or we may overestimate.

If a patient enrolls in hospice and they, for example, are doing a lot better, they're outliving the 6 months, the hospice programs often reevaluate those patients, and they do allow folks to stay enrolled with hospice care sometimes quite longer than the 6 months. Sometimes, people are on hospice a year or even longer. What they need to document is that the patient has an ongoing need where they need the multi-disciplinary team supportive care. And so as long as you meet certain criteria, and generally, the criteria are often that they have the continuing progression of the cancer or whatever the other medical illness is, the disease itself, and advancing illness, whether that be chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF). It doesn't have to just be cancer. And you need to also have often a documentation of potentially continued functional decline or functional impairment. So prognosis is tied hand in hand with functional status. And so we don't just look at the computed tomography (CT) scan when we're determining prognosis. We look at nutritional. We look at weight loss. We look at appetite. We look at functional status and comorbidities. And there's a lot of other things that go into that, not just, “Is the tumor growing on the scan, yes or no?” So it's really important to look at a wide array of things when we're determining prognosis.

Dr. Jatwani: Yes. And I think that sort of I just wanted to give our patients some idea of how we determine. I know there are a lot, many things that we have not covered, and we haven't even touched the expertise of Dr. Case, which we hope to do that in the future. And from my end, these are the questions that I had. And we hope to reconnect soon Dr. Case, and get some more insights into other aspects of palliative care, which you have done a lot of wonderful work in.

Dr. Case: Thanks, Dr. Jatwani.

ASCO: Thank you, Dr. Jatwani and Dr. Case. Find more podcasts and blog posts in the Meaningful Conversations series at www.cancer.net/meaningfulconversations.

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