Healthy YOU Podcast: Palliative care vs. Hospice Care: Is there a difference?

October 29, 2024

Podcast Episodes Healthy Aging
Nurse with older patient


Frankye Myers: From Riverside Health system. This is the Healthy you podcast, where we talk about a range of health related topics focused on improving your physical and mental health. We chat with our providers, team members, patients, and caregivers to learn more about how to maintain a healthy lifestyle and improve overall physical and mental health. So let's dive in to learn more about becoming a healthier you.

All right. I am really excited to have with me in the Healthy you podcast studio today, Doctor Sarah West. Doctor west is a hospice and palliative care medicine physician. Hi, Doctor west.

Dr. Sarah West: Hi, Frankye. How are you?

Frankye Myers: I'm fine. So this episode, we're going to be talking about palliative care versus hospice care and what is the difference? So we're going to dive into that a little bit further and talk about some of the misconceptions and uncertainty around hospice and palliative care.

We'll explore what hospice and palliative care really are, who can benefit from those services and the misconceptions that might prevent individuals from taking advantage of these services. All right, doctor west, tell me a little bit about why and how you ended up in this line of medicine.

Dr. Sarah West: Sure. So I started out as a hospital doctor out of internal medicine training, and I was in the hospital for about 15 years.

Frankye Myers: Okay.

Dr. Sarah West: Loved it. But I realized there was a gap and that we weren't reaching the patients very well to talk about what matters to them. And hospice and palliative care, that's really one of the focuses of the field. And so I saw there was a gap and decided to go back and retrain in hospice and palliative care. So it's just a natural outgrowth of what I saw in e four.

Frankye Myers: Right. Okay. I can remember as a bedside nurse this being something that we had to manage. So it's great to have your expertise to help us through that. Tell me what your day to day workflow and activities look like as it relates to palliative care and hospice.

Dr. Sarah West: Well, interestingly, there is no standard day in my line of work because of what I do. I take care of very sick patients or who have patients who have very serious diagnoses. So a lot of times I have to meet the patients where they are, and sometimes that means I'm going to their homes to visit them. Sometimes it means I'm seeing them in the hospital. Sometimes I can see them in clinic. Sometimes I'm talking to their families on the phone. Sometimes I'm talking to nurses about how to help them feel better or how do we manage whatever symptoms. So I don't have a standard day, it tends to be all over the place. But I spend a lot of time talking with families and patients and nurses about how to make them feel the best that they can.

Frankye Myers: Okay. Really, really good. Good. All right, let's set the stage for this discussion a little bit and define the difference between palliative care and hospice. I know sometimes I find myself using them interchangeably and they are very different.

Dr. Sarah West: Sure. Everyone asks this question. This is the most common question I get. I have to answer it all the time. So palliative care is really a medical specialty, is really the goal of palliative care is to address symptoms of diseases that we may not be able to cure. So it's really about alleviating suffering and having conversations with families and patients about what matters to them and how can we help them live their best life with what they're dealing with. Hospice is actually a program. So it's a program that you enroll in and it is designed to equip families to help care for their loved ones as they get towards the end of their life. So we do a lot of palliative care in hospice. Right. Helping people to feel as good as they can. But hospice is really a program. Palliative care is really more of an approach to care.

Frankye Myers: Okay. Okay. I'm glad you mentioned that because, you know, being on hospice sometimes it may be a longer term. Right. It's not immediate. And so there may be a need to have that kind of interim care. So that palliative care is so important.

Dr. Sarah West: That's right.

Frankye Myers: Okay. Very, very good. All right. Would you give me a few examples? Examples, maybe. And I'm going to talk about these from below as it relates to hospice care, especially as it relates to determiningly ill patients who are expected to expire within like six months or so to a year. Are there some parameters around that as to classification?

Dr. Sarah West: Yeah, sure.

Well, so. So to qualify for hospice care, you have to have a physician certified that they think your life expectancy is six months or less.

Frankye Myers: Okay.

Dr. Sarah West: Now, doctors are wrong all the time. I hate to tell everyone, but it is. There are other forces at work here, and sometimes we don't get the timelines exactly right. So I think people worry that they might enroll in hospice too early or whatever. But honestly, the onus is on the doctors to make a determination about who's eligible for hospice services. You know, dementia and Alzheimer's disease are a really good example of that because we don't always know exactly what's going to happen with patients with Alzheimer's.

There are certain things that we look for that are worrisome to us that mean maybe our timeline is a little bit shorter. But, you know, patients are patients, statistics are statistics, and sometimes we don't get it exactly right. So I think people fret about the eligibility, but honestly, just doing the best we can with the data that we have in front of us. Unexpected things happen unexpectedly. So we also try to think about what might happen and what is likely to happen based on what we have.

As far as patients for palliative care, I think people get very nervous about being referred to palliative care and what does that mean and all of that. And the truth is, I take care of patients in a lot of different stages of their diseases and a lot of diseases that we might hope to cure. A lot of early stage cancers are a perfect example of that. Okay, so I might have a patient, for instance, who has cancer of the tongue. Right. Right. It's hopefully a curable cancer, but the treatment can be very, very difficult and painful and cause a lot of anxiety. And so sometimes those patients get referred to me so I can help navigate them through the difficulties of their treatment. But on the other side, we're hoping not to pop. That's right.

Frankye Myers: Yes, that's right.

Dr. Sarah West: So those are a few examples of patients I might interact with.

Frankye Myers: Those are good examples. Some of the things that I hear is there's sometimes a misconception that if you put someone on hospice, you're not going to do anything

for them and so, or you're going to give up because it's a hard decision. It's a hard decision for family members. And I think for you to clarify, we don't really own, you know, some components of that. The goal is to keep them comfortable. If you want to just elaborate on that.

Dr. Sarah West: Sure. Sure. So hospice care, again, the goal is to help help families take care of their loved ones at the end of their life, and we're trying to help them feel as good as they can. Does that mean sometimes we're going to treat a pneumonia or a urinary tract infection? Of course it does, because that might help the patient feel better.

Frankye Myers: We're not going to let them suffer with the outcomes of something.

Dr. Sarah West: That's right. Are we going to treat their fevers? Yes, we're going to do all of those things. There are some things that don't make sense as we get closer to the end of people's lives. And so sometimes we want to talk about, does it make sense to go back to the emergency room for a problem that we cannot fix. So we do have those kinds of discussions, but I think people really do get nervous that hospice means giving up completely or we're not going to do anything.

The answer is completely the opposite, because my job in hospice is to help patients feel as good as they can for the time that they have left. And so we're very active in helping them manage the things that come up at the end of life. And so it's one of the best ways, actually, to, to help manage that time because it can change quickly. Things happen all the time. So having the help and support of hospice, which is frequently, like nurses and aides and stuff, being in your home on a daily, weekly basis, is really important to help pivot when we need to quickly.

Frankye Myers: Right. Like a multi team kind of approach to meeting the needs. How does a person decide between inpatient and outpatient hospice? And I know there are different nuances as it relates to that, and everybody's not the same.

Dr. Sarah West: Sure. Sure. Yeah. Every patient has their own unique set of needs and everything. Again, hospice is really designed to help families keep their loved ones at home or in their facility, if that is their home or whatever. And honestly, one of the reasons that hospice was designed is because most people want to spend their last days over. Absolutely, they absolutely do. And so the truth is we really try not to bring people into the hospital if we don't have to, but there are times when we cannot manage symptoms at home and that becomes necessary. And

that would be a scenario where we'd be looking at having a patient in the hospital. But again, the goal of hospice is to help keep people at home. So that's what we do.

Frankye Myers: Okay. That's really, really good. I know that comes up often and, you know, sometimes keeping them out of the hospital is the best scenario, especially if they're compromised because you want to access the hospital, but, you know, you're exposed to a lot of things that can not, that can impact, you know, your care. Right, sure. Right. So.

Dr. Sarah West: Well, and as we get to the.

Frankye Myers: Very exposed to things. Right. There are sick people in the hospital. So.

Dr. Sarah West: That's right. That's right. And as we get to the very end of our lives, the hospital cannot fix those things. Right.

Frankye Myers: That's true.

Dr. Sarah West: So sometimes coming into the hospital doesn't make sense in those scenarios, but that's honestly something that we navigate on a case to case basis because we just don't know what's going to happen.

Frankye Myers: That's absolutely true. And then insurance is something that comes up quite a bit, is it covered? Is it not covered? And then what are some other resources and their community resources as well to support patients and families through hospice care?

Dr. Sarah West: Sure. In general, insurance is not an issue. I mean, most commercial insurances, Medicare, cover these services completely, particularly hospice care. So that isn't usually something that's a concern. But certainly you can explore those issues with your I healthcare team or your primary care provider if that comes up.

There are some resources in the community to help patients at the end of life. And that's, again, something that I feel strongly that hospice can really help with because one of the members of the team in hospice is a social worker who can really help us navigate what's available, what does insurance cover, what doesn't it? And so I don't know all the details about that, but certainly I have members on my team who do, and I lean on them heavily to help me. Those kinds of things.

Frankye Myers: What are some other misconceptions that come to mind for you, one of which, you know, you're seeing things in the media and on the news as it relates to hospice and appropriateness or overuse.

Dr. Sarah West: Sure.

Frankye Myers: Or abuse.

Dr. Sarah West: Sure.

Frankye Myers: Can you talk about that a little bit?

Dr. Sarah West: Yeah, it's a topic that us hospice doctors don't love. Right.

Frankye Myers: Right.

Dr. Sarah West: That there would be any sort of question about people using this service inappropriately. You know, what I can tell you is that I spend a lot of time looking at my patients charts and at the patient themselves and figuring out what's appropriate, what matters in this situation.

And so we're very careful about that kind of thing. Exactly. But as far as misconceptions, I think the thing that worries me the most is that patients are afraid. The patients are afraid of hospice and patients are afraid of palliative care and what that might mean. And sort of some of the things you said about it means we're going to stop everything, we're not going to do anything else, that we are losing hope and all of that. And I would say that the exact opposite is true.

Frankye Myers: Absolutely.

Dr. Sarah West: And my experience has been that when you can face what's the coming a little with some help and stuff from a team and kind of work through some of the fear and anxiety and, you know, feelings of being scared and uncertainty is a huge one.

Right. If you have an opportunity to think about those things and talk about them, in fact, that brings a whole lot more peace and ability to enjoy this time rather than trying to keep it away. To keep it away. So I encourage people to ask about it and think about it, you know, those of us who work in this field, we don't have an agenda. We're not trying to stop everything or anything like that. I think we're trying to help patients live the best life that they can with the serious illnesses that they have and some of the things that we cannot change. And so I think our goal is to really help, to really help people who don't have a whole lot of other options. Even though that can be really frightening.

Frankye Myers: Absolutely. And I know we live our mission and our clinicians, providers, and all of the healthcare professionals in our organization practice with the utmost integrity. And I know what I would want from my loved ones or even myself. You know, we don't want anybody to suffer.

Dr. Sarah West: That's right.

Frankye Myers: When we're not able to do what we all would hope is right, we get in this field to save lives, but unfortunately, we have to be there when you transition as well.

Dr. Sarah West: That's right.

Frankye Myers: It's out of our hands.

Dr. Sarah West: That's right.

Frankye Myers: In your years of experience, can you talk about some of the benefits that really stick out for you, or are there some, you know, there's always those stories that stay with you throughout your career.

Dr. Sarah West: Sure. Sure. So, like I just talked about, I think, having a conversation about the unknown, the uncertainty, making some plans for what if things don't go well, that can bring a lot of peace and calm to a situation that otherwise feels very, very chaotic.

Frankye Myers: Right.

Dr. Sarah West: I also think, you know, one of the things that hospice and palliative care really focuses on is the whole person.

Frankye Myers: Yes.

Dr. Sarah West: And the family and the community, and how are you going to get your groceries and how are you getting to the bathroom? And so from my perspective, from looking at the whole person, it really helps families to feel known and supported. And so I think that's been hugely beneficial.

It's also wonderful for me to get to, at times, go into people's homes and really understand what their life is like. It's very different from a hospital or clinic setting where you just see persons in a hospital gown and you talk to them for 30 minutes. To go into somebody's home and really understand what's going on is such a unique privilege for me. So I have really, really loved that.

Frankye Myers: I know. You know, for me, and dealing with family and even friends, it's so important to talk about things before they happen.

Dr. Sarah West: That's right.

Frankye Myers: I've seen this type of thing and, you know, tear down families when it comes to making those decisions. Will you talk a little bit about that?

Dr. Sarah West: Sure. Sure. Really talking about advance directives. Right. Super important for the exact reasons that you say. And that's why I really encourage families to talk about things and put things in writing, because the truth is, when something unexpected happens, and there is families who, in a time of crisis, don't communicate well, which is normal, by the way.

Yes, very, very normal. You can bring a lot of peace and a lot of calm to a situation if you have already put your wishes on paper, because it is not up to anybody else anymore and there's no fighting if the loved one themselves has made their wishes clear. I tell patients and families the reason to do this is to protect your family.

Frankye Myers: Absolutely.

Dr. Sarah West: Yeah, absolutely. So I can't emphasize enough the importance of talking with your loved ones about what your wishes might be if something unexpected happens or something catastrophic happens, putting those wishes down on paper. Advanced directives are available on the Internet. You don't have to have an attorney. The instructions are available. It's easy to do. Ask your doctor.

Frankye Myers: Absolutely. That's great information. So as we kind of wind down and wrap up a little with the discussion, I want to highlight a question that I know our listeners are probably thinking about. And we've talked a little bit about that. We've talked about the insurance.

But also something that I really have learned in my career and interacting when I was a bedside clinician and then now in my role right now, is really ensuring that, to your point, understanding how important it is at end of life that they are comfortable so that they can maximize that interaction and communication with that loved one.

Because so often things happen and they don't kind of resolve or close the loop, and then there's a lot of grieving that happens because they haven't had, you know, the opportunity to say things or to communicate with that person, I think hospice allows that person to be comfortable so family can have that somewhat of a resolution or resolve. I don't know if that makes sense. But, yeah.

Dr. Sarah West: No, I mean, one of the dangers in american healthcare is as people get sicker and sicker, they can spend the last weeks, months of their life in the hospital, in a nursing facility, trying to get rehab that may or may not work and doing procedures and stuff that may not make a difference. And so one of the things that my hope is with increasing awareness of hospice and palliative care, is to give patients and their families time together, to spend the time together that they might miss out on if we don't have a conversation about what matters to them.

Right. And so if we can build some time in, if we know the end is coming. If we can build some time in for those patients to be at home with their families, to do those important conversations, to resolve the conflicts that are unresolved, to be able to be together and be comfortable and be  a human, that is the goal.

Frankye Myers: That is the mission. That is the goal. Absolutely. Absolutely. I can remember prior to me coming to Riverside, one of the last interactions I had in the hospital was patient was end of life, and she expired. And I was rounding, and the gentleman came to the door calling out to the nurses station, and I went in the room, and he was distraught. And I remember having a clear head, and I took him over and I said, say what you need to say. And he just started. They had been married a very long time. Just thanking her for a wonderful life and being a great mother and a great. And I could just tell he had such a sense of resolve from being able to do that, because, you know, it's so important.

Dr. Sarah West: Yeah.

Frankye Myers: That still resonates with me.

Dr. Sarah West: Oh, sure, sure. And I think, you know, what I tell my team all the time is that when you. When your loved one is at their last days, those family members will remember this time their entire lives. And so it is so important that it be the best that it can be and what a privilege it is for us to be a part of it.

Frankye Myers: Yes.

Dr. Sarah West: And so just, if we can approach it that way, it helps us be better caregivers and helps our families.

Frankye Myers: Yes. Yes. There's blessing. And, you know, everyone always talks about when life comes into the world, like experience and a birthday and that wind that comes, that birth of life. There is also reward in helping someone transition in the way that they want to go as well. We always talk about quality of life, but there's quality end of life.

Dr. Sarah West: Yeah, that's exactly right.

Frankye Myers: We have to have those.

Dr. Sarah West: That's exactly right. People ask me all the time, like, how can I do this work? And, you know, the answer is, it's such a privilege. It's such a privilege. And it's such a life giving work for me to be a part of helping somebody have a peaceful ending. Absolutely. It's not tragic. It's not sad. It's wonderful.

Frankye Myers: It is, it is, it is the inevitable, right?

Dr. Sarah West: No, that's right.

Frankye Myers: So thank you. Thank you for the work that you do. Your reputation precedes you, because Walter Reed and the work that you're doing, there is something that's talked about across this entire system, and we. We wish we had more of you. We wish we could  clone you, duplicate you, but you're always willing to share, and your team's always willing to share. And so I'm just so grateful. Thank you for taking time out of your busy schedule to join us. You can always come back. And to our listeners, thank you for listening. If there's a health topic you're interested in learning more about on the podcast, please email. Thank you for listening to this episode of Healthy Youth. We're so glad you were able to join us today and learn more about this topic. If you would like to explore more, go to riversideonline.com.

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