Scott Webb (Host): Today, we're discussing palliative and hospice care, the similarities and differences, the myths and misconceptions, and more with Dr. Helen Gordon. She's the Director of Palliative Care at UM St. Joseph Medical Center.

 Welcome to the Live Greater podcast series, information for a healthier you from the University of Maryland Medical System. I'm Scott Webb. Doctor, welcome to the podcast.

Helen Gordon, MD: Thank you, Scott. I'm glad to be here.

Host: Yeah, it's nice to have you here. As I was saying, you know, we're just two people talking about real stuff, things that people and families confront and may have some confusion over palliative versus hospice care. What do those things mean? What are they? Which one to choose and so forth. So let's start there. What is palliative care?

Helen Gordon, MD: Thanks. Perfect question. It means a chronic illness that we're not going to be able to cure, very possibly fatal within the coming months to years, and a situation in which we need to be very respectful of the whole human being.

Host: Yeah, and why is palliative care such an important part of the care journey for a person with serious illness?

Helen Gordon, MD: We all know how insanely wonderful it is what we've created in this country and around the world, to prolong and extend lives and cure people at times and to treat innumerable things. I mean, we've got transplants, we've got ventilators, we've got dialysis and those are all ancient things.

We've got CAR T, a thousand new wonderful therapies, immunotherapy that are extending lives. But there is often a consequence to a lot of our aggressive treatment. And we don't always explain slowly and carefully, for many reasons, what that might mean to the whole human and how long the effects might last, what life will look like after our intervention. And worse than that, we have not built into the routine medical care the take a deep breath and what is everything else that's important to you?

And what defines quality of life for you? Because people don't know both what treatment's going to look like and haven't taken the time to figure out what's acceptable life to them. They can't really make an informed choice. And so we tend to just roll forward and do a lot of treatment. So it was, it became apparent really 20, 30 years ago that we weren't taking great care of people when they became complicated because of a, a serious illness like, like a cancer, perhaps curable, but aggressive treatment having big impact or heart failure.

You know, it used to be rapidly fatal. Now people live for years and years. Dementia, Parkinson's, all of these illnesses. And we realized we needed a slower conversation to help bring a whole team together so that they were listening to the patient and family. And the patient and family was able to hear them well.

Host: So when you're talking with a patient about their care options and how their care will affect and address their needs.

Helen Gordon, MD: My goal is to make sure that we're taking care of you, explaining things well, and that we take care of physical pain and emotional pain and social and spiritual suffering, whatever it is that is the problem here and now.

Host: So it sounds like you're saying that palliative and hospice patients have access to the full range of care and support services, nutrition, social work, behavioral health. It's really wonderful.

 Yeah, and you're so right. People are just living longer, and there's so much focus and emphasis, of course, on the medical stuff, but there's also the psychological and the mental and their families and all of that. So before we get too far along here, let's also have you talk about hospice care and, do the goals differ? Is the scope different than palliative care?

Helen Gordon, MD: So palliative is a really big entity, right? You're taking care of somebody through that whole long journey and often with aggressive concordant care. So I take care of people sometimes for years. Hospice care is different. When you transition from traditional care to hospice care, it means that you've arrived at a point where the aggressive treatments for the condition, meaning IV treatments, out of the home treatments, radiation treatment, things like that, are either no longer beneficial because they're no longer fixing the problem enough to keep you moving or keep you alive if it's a cancer, it's not working anymore. Or you as a person have said, this quality of life is too poor. Sometimes it's the oncologist who says, I can't give you any more because you've become too frail. And so there is not going to be treatment that you're going to benefit from by turning up at a facility to get it done. And it means that a clinician says most likely you'll pass away within six months, though the average length of stay in hospice is unfortunately more in terms of days.

And also that you as a human and your loved ones who are in the boat with you and helping you along are accepting of what you're being told and are willing let people help you adjust your hope, to change your hope from as many days as possible to potentially as many days as possible, but with the best quality of life possible and the goal of waking each morning and saying what makes today good.

So the nitty gritty of hospice, though, is you switch over to hospice when you're stopping these aggressive life prolonging treatments, and switching to aggressive treatment to improve your quality of life for as long as it can be.

Host: Yeah, that's well said. I had a neighbor who would be just on the other side of this wall where I'm talking to you from, my little studio. And when he went into hospice care, you know, I knew that it was just going to probably be a matter of days, and just kind of get my mind around that. And I spoke with his wife and we talked about just trying to make those last few days as pleasant as possible, right?

Helen Gordon, MD: Yes. Yes.

Host: For sure. So then let's talk about the difference between choosing palliative versus hospice. When is palliative initiated? Under which conditions do you recommend it? And if you want to sort of just tie in the two of them, palliative versus hospice, I think we have a good sense so far. But in terms of the recommendations that you make, when and how do you make those recommendations?

Helen Gordon, MD: There are very specific criteria for hospice. Very specific. Sometimes people don't qualify. But palliative is just good medicine for a complicated patient. And realizing that, the American Academy for the Cancer Association requires that palliative be part of every cancer institute, because if you got cancer, you might have stage three and be treated with curative intent. But it's going to be really tough treatment with a lot of symptoms. And the goal is to make sure that we're helping people understand clearly what the options are, what may happen, and also taking care of them the best they can.

So, I take care of a lot of physical symptoms, and I talk people through a lot of anxieties about medicines. We talk about the elephant in the room, the anxiety about the cancer, the diagnosis, how do you live with that, with the goal of helping people live well with it. And at the same time, I will then, try to explain, these are the things that we expect as bodies break down.

Host: Right. And along those lines, it seems like with palliative, folks can still receive curative treatments, right? You can still aggressively treat what ails them and that would differ then from hospice care where it's just about making those perhaps final days as pleasant as possible.

Helen Gordon, MD: It is quite different. It is the much bigger umbrella. Hospice is one specific place. We all, if we're lucky, if we know we're going to die, go there because there's expertise in making it good. I've graduated people from my palliative clinic because once things got a little calmer, it was clear they were in a good place with their heart failure or their oxygen dependent COPD that was really limiting them. But we found some medicines to help them be at peace. At that point it could be years till dying, and their primary care often can take care of them. And I'll say, you call me when you have problems.

Host: You know, it feels like there was a time when it came to palliative care that people assumed, much like hospice care, that once you went there, you weren't ever going home, but that's not true, is it?

Helen Gordon, MD: There are no penalties at all for bouncing in and out of hospice care. So say things look I was talking to someone yesterday. Things have been really lousy. And she actually might be turning a corner just a smidge, but she never wants to be in the hospital again.

She's an incredibly resilient woman. I suspect she's going to be with us in six months, but I am safe saying with what, what goes on with her, there's a really good chance, there's a big, there's a good chance that she will not be. So, I can qualify her for hospice and it means I can send a nurse to her once a week who is going to do what I try and do.

Convince her to relax, enjoy, accept, treat the side effects of medications and take medications to be more comfortable. And then call me when there's a problem and say, I think we need more of X. But when she graduates because the hospice says, three months or six months has gone by and she's doing, she weighs the same thing and she's doing okay.

Well, then, okay, fine. No big penalty. If she has another, if she has a fracture the next week, she can go right back into hospice.

Host: Let's talk about folks and other providers in developing a care plan, whether it's hospice or palliative care. You mentioned earlier the sort of team approach, multidisciplinary and otherwise. So how does that team approach work? How do you apply that to developing a care plan?

Helen Gordon, MD: Just as palliative care gets very individualized because it's just good care for a complex patient, there are general patterns that were developed for hospitalized palliative care. Somebody that I saw yesterday in the office, it's really clear, there are a lot of problems with hypertension because she's incredibly sensitive to medicines.

Often when somebody has a cancer that's going to be fatal, the blood pressure is not really that critical, but actually for her, it's getting to a point where it is unclear what's going wrong now. So, I talked to all the involved parties and brought in an oncologist. I met somebody earlier this week, her struggle is, she's in remission. Other things as well too but she's incredibly fatigued by treatment and by cancer as most people are, but her life purpose involves a sense of mission for helping others, and she wants to be doing that as well as providing for family, and she's really struggling.

And because part of this was spiritual and God related, I needed my chaplain. They're going to meet. So it is the team that's needed. And like oncology teams, there's access to nutrition, to social work. I use the behavioral health clinic here at St. Joe's with some frequency.

Host: Things that you've mentioned here, of course, we could do entirely separate podcasts about CAR T-cell immunotherapy and the sort of curative treatments that folks are going through in palliative care. And you touched on there the behavioral side of this, but let's talk about that. Let's talk about emotional, psychological needs and how your team helps to address them.

Helen Gordon, MD: The first step is always physical. But then my second question after they tell me that they're fine, they're okay, they're not in pain, their breathing's okay, is how are you doing emotionally? And that's one of my questions when I'm following up with people, too. I want to know what they know. What are the stresses you're under?

A lot of people are in financial strife. So I'm like, okay, I know this a little bit. This is where I think we are, but think you should either talk to a lawyer about this. Let me contact my social worker helpers. And spiritual, I told you what I do. People come in and they say, why'd God desert me? Or I'm really having problems with what's happening here.

Host: It makes me wonder and I think folks wonder this as well, whether they be patients or family, what choice do they have in this? The choice to do one or the other, or neither. If you could talk about that a little bit, you know, who makes these decisions?

Helen Gordon, MD: Most people at this point, I think, still need palliative care if they are in a cancer institute. And also basic palliative care, again, it's just good medicine. Oncologists should be able to do a lot of this, but some cases are more complex; people need more time.

It's great. It would be lovely for everybody to get more time but some people really need it because they are struggling so much emotionally that they can't hear what's going on. They can't get to any sort of understanding of what's happening medically because of a lot of reasons that are only partly to do with them.

The majority of people also probably need palliative care in the hospital, which is where the majority of it is done. So what choice do people have? People have choices about whether they go to the doctor or not. And many times my oncology colleagues will refer someone, and people will be frightened by it. And if they come, they're like, we didn't know what to expect. We thought you were a hospice. I'm like, oh.

And they're over it, usually by the time they tell me that, because we've been talking about other things. And then I answer them what hospice is and how it's different. People always have a choice and even if you are dying of metastatic cancer, where the chance of benefit from resuscitation in an ICU is null and void; if you are clinging to a desire for cardiac resuscitation and you get 911 to an ER, you will get cardiac resuscitation. If it is successful and you make it into the hospital and the ICU, then at some point, two physicians are going to make you a two physician DNR, because it is medically inappropriate, not standard of care.

But the problem was that the right words were never found to explain that. And sometimes that's the listening ear. Sometimes it's the patient not letting the family in because they're trying to protect them. And so they're not letting everybody who is watching this happen get to learn, and sometimes it's because somebody was too scared to come see me, and my colleague doesn't have time to go through the slow explanation. His or her job is to know exactly all the details of CAR T therapy. Like I'm learning it, but I'm not the oncologist.

Host: So a big part of your role involves helping patients and families understand that they have options and that you're here, you know, to understand their needs and how they define what they consider to be a good quality of life.

Helen Gordon, MD: I'm the, let's make this day good person. Let's listen to you. What makes a day good?

Host: Helen, I feel like we've only scratched the surface today. I'm going to leave it there. But I love that. That's going to be my takeaway from you is the, you are the person who like, let's make this day good. Let's make today. If you're here tomorrow, we're going to worry about that then. But we're going to worry about today.

Helen Gordon, MD: I'm sorry, that is, you know what, I'm stealing though, that's hospice. And I am, yeah, let's make today good. What are your options for tomorrow? Yeah.

Host: Yeah. Well, think we've given folks a lot of information today. It's a lot to take in. Big decisions, life or death decisions in some cases. Been lovely to have you on. You stay well.

Helen Gordon, MD: Thank you, you too. It's been great talking, Scott. I appreciate your time.

Host: Thank you. And find more shows just like this one at umms.org/podcast and on YouTube. I'm Scott Webb and thanks for watching and listening to Live Greater, a health and wellness podcast brought to you by the University of Maryland Medical System. We look forward to you joining us again, and please share this on your social media.