Episode 104: Hospice Care and the Myths Surrounding It

Dan Keller 0:02

Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research—the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.

As Parkinson's is a progressive disease, sometime in its later stages, when symptoms may become difficult to manage, it may be worth considering hospice care, which can optimize quality of life for the person with PD and for care partners. But because of myths and misunderstandings about hospice, many people do not avail themselves of all of its benefits until very near the end of life, but hospice can provide services before then. When I spoke with licensed clinical social worker Jessica Shurer of the University of North Carolina, she described what hospice is, what benefits it can provide, and when and how to consider it. I suppose the first and most basic question is, what is hospice?

Jessica Shurer 1:36

That is a good question, and a surprisingly loaded one, just because there's so many misconceptions about it. But basically, hospice is the palliative care model applied to people who are thought to have about six months or less to live. And I know that you're also interviewing my colleague Adriana Gonzalez at the University of California, San Diego, who's going to be explaining palliative care as a model of care focused on symptom management and comfort, and how that applies as an overall framework to Parkinson's care.

A lot of times people tend to use the words palliative care and hospice care interchangeably, as if they're synonymous, and in a way they are, because hospice care is palliative care. But the big difference is that hospice is palliative care applied at the end of life, like I said. So it's still the same model, in that it's really focusing on quality of life, focusing on comfort, on dignity, but it's really just for those who, like I said, are thought to have six or less months to live.

Dan Keller 2:57

What can hospice offer people with Parkinson's and their families, both for the person with Parkinson's, and is there also support for caregivers?

Jessica Shurer 3:08

It really can offer a lot. So hospice is really meant to be a holistic, team-based approach to care. So usually, at a minimum, a hospice team is a nurse and a clinical social worker, and so they're really trying to address symptom management and comfort, like I said, through things like supplies and through medication, and just really keeping someone out of pain and out of anxiety or other symptoms that are uncomfortable that might come up, such as nausea or constipation or difficulty breathing.

But because a clinical social worker is usually involved, sort of like how we approach a lot of Parkinson's disease—or should—there's also a focus on psychosocial needs. So, on coping and on anticipatory grief and caregiver support and processing this part of the experience, and on bringing supports into the home if you're needing respite care or even someone to help with showering, as well as bereavement services, spiritual services. Again, to try to process this and make sense of it, and really just focus on that full picture that families are needing during that experience emotionally and physically.

Dan Keller 4:41

I think one other misconception may be that hospice is sort of giving up, and I think there's a difference between giving up and the reality of facing the end of life. How do those two things... how do you reconcile them?

Jessica Shurer 4:59

Yeah, that's a really good question, and I'd say that's probably one of the biggest barriers to people pursuing hospice, or even healthcare providers talking about hospice. It is one of the biggest misconceptions about hospice—because you're not so much focusing on getting someone better, on keeping somebody alive, and really just sitting with that journey of however much time someone has left to live and keeping them comfortable and dignified during that time, that that means that you've given up on keeping them alive. It's a hard thing to reconcile, because it's really a big mindset switch for a lot of families, especially with Parkinson's disease.

So much of Parkinson's is a beating it, of rehabbing, a fighting it kind of mentality for so many years of doing all these rehab therapies and tweaking your medication to control your symptoms. And then the unfortunate reality is that it is a progressive disease, and so at some point for most people, unless other things come up that are perhaps not related to Parkinson's, there comes a point where the energy that you're putting into trying to get someone to get back to baseline, to getting better, to rehabbing—the energy that you're putting in is not so much giving you the benefits that you're needing anymore. It's not what you're needing at the time.

And so people really have to do this kind of mindset switch from that fighting it kind of mindset to, "We're just going to let this be what it is at this point, take its course at this point, and our priority now is focusing on comfort rather than getting better." And that mindset switch happens differently and in time for every individual and every family.

Dan Keller 7:01

Are there barriers to bringing on hospice care?

Jessica Shurer 7:05

Well, I think that that mindset switch that we just talked about is definitely part of that. People need to have these conversations, they need to bust some of these myths and misconceptions in order to feel ready. But I think that a big barrier is also people not really talking about it. So if you're seeing a neurologist every four to six months—or as someone is in more advanced stages, you might not be seeing them for a long time—a lot can happen in between those appointments. And so there are doctors who might not really be picking up on how now is the time to explore hospice, but there's also plenty of healthcare providers, even if they're seeing someone and they know that there's a decline, they might not be as familiar with hospice to know that this is the right time.

Or, what I see most often, is that a lot of healthcare providers aren't comfortable discussing it. You mentioned the idea of giving up hope, and a lot comes from the family perspective, but it also comes from a lot of healthcare provider perspectives, too, of not wanting to seem like they're giving up on their patients. We unfortunately live in a death-denying society, so a lot of times we don't have these conversations within our families or with our healthcare teams. And I understand that, because it's not easy to acknowledge that the end of life and death are part of every person's journey. They're not fun conversations to have, but they need to be had in the right time, in the right context, between family members, between loved ones, between healthcare providers and families, because it can really help support people through that part of their journey.

And so I'd say that if a family is at a point where they're exhausted by all the different medication changes, and if they're going to the hospital for infections or falls, and you're sort of at that point where, "Are we doing the right thing? I really want to be focusing on their comfort. Is hospice appropriate? Is it not?" and your doctor hasn't approached it with you, you can always advocate for yourself to talk to your healthcare providers about that. "Do you think we're there yet? What's your medical opinion on this? Have we done all of these things that we can, and is this what we're needing right now?"

Dan Keller 9:46

Is that the time that people should be faced with it? I mean, obviously you would be faced with it at that time, but is it advisable to do this sort of planning far in advance when it's not imminent, so you really have rational discussions and make your wishes known and figure out what the possibilities are for later?

Jessica Shurer 10:06

Absolutely. Because in our society, and in most societies, it is not fun or easy to have these conversations to acknowledge that Parkinson's or other diagnoses are progressive, or might result in, you know, end of life, or that we're just mortal beings in general. A lot of people don't have these conversations, and I can't tell you how many times I've seen in my patients and families people being far past the point when they could have been hospice eligible and benefiting from hospice services for a long time, and then all of a sudden it becomes very obvious, and they're referred to hospice, and they could have been benefiting for a long time.

So I always recommend having these conversations early, having them beforehand, normalizing them from an earlier point in the disease journey where you have these discussions with your loved ones around what wishes you have, what comfort and end of life and dignity means for you, what you want your family to know, and at what point you would like to shift the focus of care from getting better to just being with someone for however much time they have left. That way, you have sort of a foot in the door with that mindset, and it doesn't come as big of a transition or a shock to how you're approaching care, and you could have those conversations early with your healthcare providers as well, of, "Can you let us know when is the right time that we should be thinking about hospice?" so you're not really sidelined by it, because I have seen that a lot.

And I think that that sort of points to how helpful healthcare advance directives and completing things like a healthcare power of attorney, or DNR, or a living will can be, because it starts some of those conversations and gets people on the same page and acknowledges that this can be part of the journey, and then that's okay to address.

Dan Keller 12:20

Do you find that people and caregivers are somewhat relieved once hospice is on board? I mean, they can then relate to each other without a lot of burdens that can be taken over by a hospice team—whether it's the social worker, or psychologist, or neurologist. It seems like there's a whole lot of people who can kind of pick up some of the tasks that the caregiver was handling themselves before.

Jessica Shurer 12:47

Absolutely, I'd say that I see that for the large majority of my patients and families. Some kind of mental burden about it just seems to get lifted for a lot of families—that there is more support out there, and that it validates that this is what they're needing right now. I don't know if I've ever worked with a patient or family where they tell me that they regret bringing on hospice services. More often than not, people will share with me that they wish they had explored it earlier, they wish they had been referred earlier.

Some interesting statistics that I was reading recently about hospice was that the average length of service was something, I think, about 76 days, and that the median length of service was only 24. I remember this from when I interned at hospice when I was getting my master's—that over half of patients enrolled in hospice are in it for 30 or fewer days, but you can be eligible and receive hospice services for far longer than that. So the way that it's covered by insurance is that they ask for a doctor and hospice to say this person most likely has six months or less to live, but because no one can really predict how long someone has, I've seen people be on hospice for far longer than six months. But I've also, for so many of my patients, seen them on it for just days or weeks or a handful of months, and again, they could have been eligible and receiving those benefits for so much longer.

And not only when you bring on these services are you getting the nurse and you're getting the clinical social worker, you might be getting someone to help with bathing, you might be getting a hospital bed, which can help keep somebody comfortable and more easily move. It can cover all the medications that someone is taking that hospice believes are palliative-focused medications. It can cover continence supplies. It can cover, like I mentioned, spiritual services, bereavement services—so these are all extra supports that the family might not have been getting or wouldn't have been covered before that all of a sudden is, and so it's really, like I mentioned, it's holistic services.

Something that I love about hospice is that they view not just the patient as the patient; they view the patient and whoever makes up their primary support system as the patient. So they're really meant to be there from the time of hospice enrollment through six months, or sometimes a year after death, for the family and the people who were impacted by that person dying, and it's just a huge sense of relief oftentimes for these families.

Dan Keller 15:53

With so many diseases and conditions, you often hear people say, "I don't want to be a burden to my family." I would think this might relieve some of what someone feels as guilt for being an imposition and things like that, when more help comes in and the burden is taken off the caregiver, so it seems like it could be psychologically beneficial to the patient with the disease.

Jessica Shurer 16:16

Yeah, that's a really good point, and that guilt thing, that fear of being a burden is one of the most common challenges that I think people experience in Parkinson's or other neurodegenerative diseases, or even just in general. No one wants to be a burden on their family and on the people that they care about, and what burden means is different for everyone. And of course, family members often view people not as a burden—they're helping support them through this because they love them and they care about them.

But with hospice, they can really help play a lot of that role, that they take some of that care responsibility off of the family. These are professionals who chose to go into end-of-life care. They're usually very passionate about it. They're very special, very caring individuals that want to take on that responsibility, and so that is off of the family, and that family and that patient can then just spend most of their time focused on connecting, on caring, on being with each other when there are these other people who can step into those more hands-on, logistical kind of roles.

Of course, it doesn't take all of that away. It's really meant to be a team focus with the family and the patient, and there's always still hands-on caring and other things to figure out, but that focus can really just be on being together with however much time someone has left.

Dan Keller 18:03

I think another misconception might be that to be in hospice, you have to go somewhere—you have to go to a hospice house or home. What settings is hospice available in?

Jessica Shurer 18:14

Oh, yeah, that's a huge misconception. I have these conversations all the time, and that's one of the biggest questions that come up. So for the large majority of people under hospice care, they receive hospice in their home, or really wherever they're living. So hospice can also go into long-term care facilities as well, if that's where the person is living. But corporate... oftentimes people want to pass away in their home, they don't want to pass away in a hospital setting, and the idea of hospice—or one of the ideas of hospice—is to keep people from dying in the hospital, of being in their familiar environment.

So they come into your home—the nurse, the social worker, they visit you in the home, a CNA might come in and do bathing in the home. That's why they bring in those different supplies. They do an assessment of the home, figure out what you're needing. If you're not already bringing in some in-home care services, like for respite, they might talk to you about that, get you hooked up with those resources, even though they're not able to provide that, like someone to come and sit with the person or help around the house, but they're able to connect you to those resources in your community.

Something that's really neat about hospice is that Medicare, at least, will cover, I think it's five days of facility-based respite services if it's needed for the family. And so for that, if that hospice has their own facility-based hospice, like a hospice home, they'll bring somebody there. If a hospice organization doesn't have their own hospice home, they might cover for them to go to a different hospice home, or sometimes a skilled nursing facility. So, not all hospices have their own hospice home facility, but those that do, they also will utilize those for other kind of facility-based needs.

So, if someone is very unstable and their care in that moment really can't be addressed in the home setting, or if there's significant caregiver burnout, and they really just want to bring someone in for stabilization or monitoring a little bit more closely, they'll bring them to the hospice home. I've also had some families who, for whatever reason—it's a very personal decision—do not want someone to die in their house. Some patients don't want to die in their house, and so in those cases, if someone is imminently dying and they don't want to die in their house, there's the option to bring them to a hospice home facility to pass away there, and they have 24/7 services there. And usually, they're individual rooms, they're very thoughtfully decorated and comfortable, and there are showers. But the large majority of people under hospice services receive them in their own home environment, so it's not like you go under hospice and you're forced to move to a facility or anything like that.

Dan Keller 21:30

Is there anything important to add that we've missed?

Jessica Shurer 21:34

I just think that's something I really want to stress, and I think that Adriana will stress too when you talk to her about just the palliative care model in general, is that Parkinson's care—we really try to think of it as palliative from day one, because there is no cure for Parkinson's. We really, as healthcare providers, as, you know, the movement disorder specialists I work with, their goal is to keep symptoms as manageable as possible, and to keep a person as comfortable as possible from the time of diagnosis. That's why they refer to different resources, to rehab therapies, tweaking medications, adding medications, and so that is the palliative care model, and we apply it at day one. And then hospice is really just meant to be a continuation of that as it's applied to the end of the journey, to the time when someone has more limited time left. It shouldn't be something that's losing hope or this huge shock; it's really meant to be a way to keep someone as dignified and comfortable from the time of diagnosis to the time of death.

We never want someone to feel not ready for it. Everyone makes this decision in their own time, but those conversations, like we were talking about earlier, need to be a part of it to make sure everyone's ready and on the same page, so it's meeting their needs at that time. One of the most common questions that we get is, "When is the right time for hospice?" Some of the things that we tend to see is, of course, generally a more advanced disease state, but some of the kind of signs that we tend to look for is if someone is having more regular falls, if they're having recurrent infections, if they've had to go to the hospital for different things, kind of in an increasing fashion over, say, several months, if medications aren't working as well as they used to, if someone is not able to be as engaged in their lifestyle or in activities as they used to be—those are kind of the times when we say this might be something that we should explore at this point.

Something that's really neat about hospice is that it's not an obligation. So, if a family is wondering, or even a doctor is wondering, "Is this the right time for hospice?" the doctor can either send an official referral over, and the team will come out and do an assessment and talk about hospice services and confirm if this person's eligible, but you also don't need a referral to have hospice come out and do what they often call an informational visit. They'll do a little bit of an assessment, and it's really just discussing what they can provide. And at that point, I've seen some hospices say, "You know what, based on what you're sharing and on what this person looks like and what they're needing right now, this might not be the right time for hospice." But they also might share about their services and say, "If you're wanting to go forward, we do feel that you would be eligible for hospice," and then at that point, the family and the person with the disease can say, "Yes, we're ready for this," or, "No, I want to hold off a little bit."

And even once you start services, you can stop at any point for whatever reason. But I will say, I see so many people actually improve a little bit once they're under hospice services, because they're getting so much more support and care that they actually start doing a little bit better, and then sometimes to the point where they're not hospice eligible anymore, and they'll stop services. And then they start declining again, and they'll bring on hospice again. So it's meant to be very flexible and meeting people where they are, and so I just want people to know there's really not a downside in talking about it, or exploring it, or even being referred to it, or doing an informational visit.

Dan Keller 25:57

Great, thank you. A lot of information, I appreciate it. For more resources on hospice, you can search for hospice at parkinson.org/library. There you'll find fact sheets and articles on the topic. The fact sheets titled The Role of Hospice and Palliative Care and Hospice cover its benefits, how to discuss it with a loved one, applying for hospice, and insurance coverage. There is also a helpful list of questions to ask when considering hospice.

Another article addresses how to discuss taboo topics in Parkinson's, including caregiver burnout, palliative care, end-of-life planning, and how to bring up uncomfortable topics with your doctor. As Jessica mentioned, hospice services can be delivered wherever a recipient resides, and the article on hospice at home covers that option.

While hospice is intended for people nearing the end of life, it's really an extension of palliative care in general, which provides supportive care at all stages of a disease, with a goal of minimizing the burden of the disease and optimizing quality of life. In our next episode, social worker Adriana Gonzalez will talk about how the palliative care model can be applied to movement disorders.

If you have questions about hospice or anything else having to do with Parkinson's, our information specialists can provide answers in English or Spanish. You can reach them at 1-800-4PD-INFO. News and updates about future events and resources are available by joining our email list at the bottom of our website's homepage. If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback.

If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts, or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Until then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening. Thank you.

Jessica Shurer, MSW, LCSW is the Clinical Social Worker and Center Coordinator of Movement Disorders Center at the University of North Carolina at Chapel Hill, which is both a Parkinson’s Foundation Center of Excellence and CurePSP Center of Care at UNC. She studied Psychology, Gerontology and Human Development & Family Studies at Penn State University. She joined the UNC Movement Disorders team in 2012 after graduating with her Master of Social Work at UNC Chapel Hill where she also completed an Interdisciplinary Certificate in Aging and the Hartford Partnership Program for Aging Education Fellowship.

In her role, Ms. Shurer provides psychosocial support and connection to resources for patients and families living with Parkinson’s disease and atypical Parkinsonism diagnoses (PSP, CBD and MSA), coordinates two specialty interdisciplinary clinics, facilitates three community support groups and co-facilitates a national support group, and organizes educational and outreach programming. She is honored to be involved in multiple initiatives and collaborations with the Parkinson’s Foundation and to be on the Board of Directors for CurePSP. Her clinical and research interests include supporting and processing emotional needs of navigating the disease journey, integrated healthcare models, and end-of-life care.