Neha Pathak, MD, FACP, DipABLM: Welcome to the WebMD Health Discovered Podcast. I'm Dr Neha Pathak, WebMD’s Chief Physician Editor for Health and Lifestyle Medicine. When someone you love is navigating complex health issues and requires more care or more frequent hospitalization, it can feel as if you are always bracing for impact, just waiting for the next crisis.

It's incredibly challenging to step back in these moments, look at the bigger picture, and figure out what your loved one actually wants and what they need, and what would improve their quality of life. If that sounds like you and your loved ones, particularly as they're aging, you're not alone. For so many families, palliative care and advance care planning are brought up late in the journey, if at all, and are easily mistaken for conversations about the end rather than tools designed to support living better.

If we're scrambling in a moment of crisis, palliative care and advance care planning can be misinterpreted as stopping care or for things like hospice, rather than helping people live as fully and as comfortably as possible for as long as possible, according to their own priorities.

This is episode five in a six-part series in partnership with The John A. Hartford Foundation, and today we're talking about what palliative care really is, how it can support both patients and caregivers long before hospice is ever on the table, and why choosing a healthcare proxy and having what-if conversations early can actually protect your loved one's wishes and spare your family from some of the hardest decisions. We'll explore simple language you can use to start these discussions at home, how to navigate cultural values and mistrust of the healthcare system, and one concrete first step you can take right after this episode: choosing and preparing a healthcare proxy so that if a crisis comes, you are not scrambling in the ambulance or in the ER to guess what your loved one would have wanted.

First, let me introduce my guest, Dr Anthony Back.

Dr Back is a professor of medicine at the University of Washington and a national leader in patient-oncologist communication. Educated at Stanford University and Harvard Medical School, his National Cancer Institute-funded research led to the founding of VitalTalk, a nonprofit dedicated to teaching serious illness communication skills to clinicians, work that's been recognized with major awards from the American Cancer Society and ASCO.

Welcome to the WebMD Health Discovered Podcast, Dr Back.

Anthony L. Back, MD: Thank you so much for having me.

Pathak: I think it's so important, the conversation that we're about to have, and I'm really excited to dig into it. But before we do, I'd love to ask about your own health discovery when it comes to your research. What were some of the questions, the issues that you saw, that led you to the work that you've done?

Back: It turns out my mother died of a blood cancer when I was a sophomore in college. And my father put me on the phone with the oncologist because he had no idea what to say. And the oncologist started to go into a whole bunch of really technical stuff. He talked all about her spleen.

That's all I remember from this whole conversation—details about her spleen—and I was kind of confused by that at the time. It seemed important, but what happened after the call was I realized I needed to just go to the airport, get on a plane, and fly home. And that's what I did. But it wasn't because of anything the doctor actually said.

And then later in medical school, I realized that that kind of conversation was happening all the time, actually—that it was more the norm than the exception. And I realized that we needed better ways as doctors and nurses to talk to people, to connect with people, to help them understand what they're dealing with. And that was where this all started for me.

Pathak: Thank you for sharing that really powerful story from your own experience.

Right now I'm thinking about my own father, who just turned 89. He just celebrated his 60-year wedding anniversary with my mom. But the past year to year and a half has been this downward trajectory where he's been in the hospital so frequently, and it feels like we're always kind of talking about that thing that's going on right now—whether it's, you know, in your example, the spleen, or whether it's, oh, you know, a head injury, or it's urinary retention, or whatever it is—without really talking about the big picture.

And our conversation today is going to center around palliative care. So I'd love to start there because that is definitely the team that, whenever we are in the hospital now, we're like, can we get the palliative care team to come as well? So talk to us a little bit about what we should know and understand about palliative care and how these teams operate.

Back: So palliative care is a medical specialty that is tailored for people living with a serious illness. And the goal of palliative care is to help people live as well as possible and as long as possible at any age or any stage of illness.

So palliative care is really there to focus on quality of life when it's easy to get lost in all the procedures and all the appointments and, you know, all the statistics. Palliative care is there to say, what's really important to this person? How can we make sure that they are living the life they want to live in whatever condition they're in?

You know, I have an elderly father too, and he's at what I'd call the kind of house-of-cards stage. He's still living at home—he's barely making it. And, you know, one more thing and the whole house of cards is going to fall apart. Right?

And those are the kinds of times when having conversations about what's really important are critical. And you don't have to be a doctor or nurse to do this. I mean, it could start with something as simple as, “How are you doing going back and forth to the emergency room all the time? Should we talk about alternatives to that?”

So you don't have to be a clinician to initiate this conversation. And it's very possible to do this at home. It's very possible to do this with a clinician who's helping guide you if it's too hard or if it's just complicated.

And there is this myth out there that talking about bad things or contingency plans makes them happen. I get that, and I know it's a fear. And yet what I see is that having conversations that touch on the reality of things—even if they're really short conversations—can make a world of difference in how people live out the last phase of their lives or live even in the middle of a complicated illness.

Pathak: I want to pull on something else you said, which is myths and misconceptions around palliative care.

So you mentioned some. Can you talk a little bit more about others like that? That it's essentially saying that you are giving up or that it's hospice.

Back: So important. Thank you.

One of the myths about palliative care is that you have to be dying to get palliative care. Wrong. Palliative care is for any age, in any stage of illness.

The other kind of worry I hear a lot out there is, “Palliative care is a way for the hospital to save money on me.” And actually, palliative care is a way to get what you want and for you to have a say in your care.

So I really think of palliative care as empowering patients and families to take the best of the super technical care that's out there and combine it with all the things about your life that make it worth living so that you and your medical team can really be on the same page.

Hospice is something separate in most places. It's really for end-of-life care, and those are specialized teams who have a lot of expertise in how to deal with that phase of life. But the myth about palliative care is that “I'm not ready for it yet,” and actually a lot more people could benefit from the services that palliative care offers than actually take advantage of it. So it's underutilized.

Pathak: It's confusing. It's not like a yes-no, black-and-white situation where all of a sudden one day you are a candidate and one day you're not. So how do you sort of talk to patients around that gradual decline?

Back: Well, one of the things that I think is really helpful is to talk about milestones. Are there things that you were able to do before that actually are pretty hard to do and that seem a little difficult now? Because of course no one can see the gradual decline because it's happening to them.

It's like the frog in the water that's getting hotter and hotter and hotter. And so having some milestones like, “Oh, I noticed that you're not going to church every week anymore. What's going on with that?”

Or, “I noticed that you're not going over to your friend's house as much. What's going on with that?”

I think those are gentle ways to help older people talk about how their frailty is starting to affect them. And talking about it like that takes it out of being a medical condition or medical diagnosis. Nobody wants to be diagnosed by their daughter—even if their daughter, like you, was a doctor. It's just not a good patient-child vibe.

I could certainly say that from my own father. And it's a way to steer the conversation toward what do you really like doing now and feel confident doing? What should we put some energy into making sure you can continue to do that?

If there are some things that seem not so realistic or maybe a little dangerous, maybe we should just acknowledge that those things are a lot harder now. Maybe those are special-occasion things, or different things, or maybe even things that aren't so possible.

I think those conversations, which I think of as the “what matters now” conversations, can be really helpful. Because the cycle that I see so many well-meaning caregivers get into is they feel like they're responsible to restore the person to their state of health from however many years ago—when they remembered them when they were 30 or 40 or 50.

And now they're 60 or 70 or 80, and they've been dealing with a bunch of other things. I think it's a process for both the kids or the caregivers or friends, and for the patients themselves.

Pathak: Let's start talking more about advance care planning and talk to us a little bit about what does that even mean? What does it mean to have this conversation around advance care planning?

Back: Great question. So advance care planning is planning ahead for the what-if situation, if something serious happens, right? That's how I think about it. And, in the case of somebody who's been coming back and forth to the hospital a lot, the what-if question might be, okay, we've been to the emergency room three times in the past three months, and every time you've spent 10 hours here and come back home, and it doesn't really seem to have made a major difference for you.

So, is that what we wanna keep doing? And is there an alternative way to get you the care that you need that will allow you to stay at home as much as possible? 'Cause it seems like that's what you want. And is that true? Those would be some ways I think we can talk to people, especially older adults, about what advance care planning is.

It's the how do you have a say in your care? How do you have a say in how much you want to come back to the hospital, and how much do you wanna wait around in these emergency rooms or clinics? Is that what's best for you right now?

Pathak: That's really helpful, and I wanna dig into a tool that you developed. So you helped develop the serious illness messaging toolkit, and I think this is just really interesting because I think I'm hoping that what the guidance here is to help your care team proactively have these conversations with families as well. So can you tell us a little bit about that?

Back: So we took all the research that has been done on regular people, the general public, and what their perceptions of advance care planning and palliative care and hospice are. So these are not necessarily people who are patients yet because we were trying to design ways to make those conversations easier and more tractable and less threatening.

So, for example, one of the things that we learned with advance care planning is instead of asking people do they want CPR when they're dying, right? Which is one of the things that's come up a lot. It's way better to ask this way upstream question, which is the question about let's help you have a say in your medical care.

If you could tell your doctors what you really wanted, how you really wanted to live, what would you tell 'em? Right. And so it's like a combination of marketing and public health. You know, you take what are people worried about, what do people care about, and what are the kinds of questions that can make a difference in their future care?

So although we were creating the toolkit for care providers, a lot of those principles are, I think, things that will trickle down to patients and things that I've taught in other places. You know, like at VitalTalk and the stuff that we did for communication skills directly for patients. But we wanted to go way upstream so that people could start to have these conversations earlier.

Not when they get to the hospital, but when, you know, their daughter or son says, whoa, whoa. What is going on here? When I step back, what I see is actually we're kind of at the house-of-cards stage. Like how do I prepare us for that so that I don't feel frantic and desperate and clueless the next time we go to the emergency room? Can I have a plan and can I be working with a care team who knows that plan so that when we get to that moment, I can call them, we can be in contact, they can guide me about the particular issues that are going right then, and I can make sure that I don't end up on a wild goose chase with my father to the emergency room where he stayed for a day and then came home with nothing really different.

Pathak: I kind of wanna dig into some of the cultural pieces here as well, and I wanna also point out here that just because you may be part of an ethnicity or a cultural group doesn't mean that that's monolithic either in the way that you see things.

Can you talk to us a little bit about how these conversations in your experience may be different based on just cultural values, social norms that you see?

Back: Yes. So, it turns out that patients who are Black or Hispanic or Asian, in the broad brushstroke categories that researchers use these days, right, for the same level of symptoms with the same level of disability as white patients, they get less palliative care, right? And so a bunch of research has gone on to figure out why is that?

Do they just not have access? Is it not being offered? And there is some of that that's going on. But a big factor in it is that Black, Hispanic, and Asian patients and families are more worried about what palliative care might mean. And here's where this cultural thing comes in. These are all cultures that in different ways have experienced not good things from the healthcare system.

Like they have seen the healthcare system, our current healthcare system—you know, and I'm a doctor, well-meaning as it is—they have experienced it as untrustworthy, right? They have experienced it as a hostile place. And when we did these interviews with patients and caregivers actually, about what it was like to be offered palliative care, the thing they talked about was the safety that they feel is in their community. Whether it be their family or their neighborhood or whatever, those are their people.

And they have created strong communities as ways of living in a world that wasn't always open to them, right? And so leaving that world to go to the hospital and get your serious illness taken care of is hard because you're leaving your safety zone and you're going to a place where you know, if you are a Black person, you know that Black people were experimented on. And this is not super historical.

It's last generation. It's people's grandparents, right? If you are a brown person right now, you're worried about ICE coming into your hospital room, right? If you're an Asian person, you remember how when Japanese people were rounded up and taken to internment concentration camps.

And so it turns out for those cultures, the safety issues in hearing about dealing with a serious illness that has to do with the way you live—that is a layer of concern that I don't think we were so clearly understanding before, right? But when you look at the research and then talk to people, real patients, you can see how much of a background thing this is.

So it's not like they're gonna say something often right to you. It's more like they'll say, I'll think about it. Or they just don't call back. Or they say, oh, I need to talk to my friend. But what's happening in the background is that they are looking for signs of safety and signs that they can trust you.

And that trust-building, I think we need to realize and take into account that it requires a slightly different level of resourcing, right? It requires a little bit more clinician time. It requires materials that are made for those people. And the materials need to be materials like: I am a Hispanic person who was living with cancer and I got palliative care because I was having a lot of pain and I was having a lot of family stuff 'cause my wife was super stressed and it helped me.

It helped me get through my cancer treatment. It helped me have a good response to my cancer treatment. It helped me get through the whole thing, and here I am, right? Those kinds of little mini stories are the kinds of things we need to talk to people about to help them see what the value of palliative care is.

And, you know, we experimented with like 100-word stories, tiny little things that people could drop into presentations or drop into how they talk to patients instead of leading with the data, right? Instead of going, well, 75% of people like you need such and such, and their eyes are glazing over, right?

Or worse: Black people should have hospice more often. You're just not opting for it, right? And like blaming the victim for not opting for something that actually has been super threatening for them, right? Like that's a whole dynamic we need to all understand better as clinicians.

And so, of course you are pointing out that every culture is not monolithic and there are lots of little subcultures within every one of those cultures. But it doesn't take a lot of time for a doctor or a nurse to say, hey, I think palliative care would really help with your pain and with your family stress. Have you heard about this? Has anybody in your world tried out palliative care?

You know, what can I tell you about this that would help you decide about whether it's right for you? Right. No pressure. Offer clearly, point out why you think it's good for that patient. And, you know, more often than not people will go, yeah, well tell me. I'd like to be in less pain. I'd like to have my family be less stressed.

And so I think it's about creating those little narrative ways of connecting with people and not coming in with all this public-health-level data. We need the public-health-level data. It's super important, but not for this particular moment. 

Pathak: This has been just such an informative conversation. I especially appreciate the focus on how we're messaging both as clinicians to patients and families, but also as caregivers. How are we sort of advocating for our loved ones in the healthcare system? So I'd love to just end our time together by ceding the floor to you for someone who's listening today. What would be one step or the first step that they may wanna take as they think about their own family situation and potentially thinking about advance care planning palliative care services? How should they get started?

Back: What a great question. Thank you for that. I think a super useful, relatively easy place to start is: does your, the person you're the caregiver for—your parent, friend, whatever—do they have a healthcare proxy? If that person suddenly got too sick to speak for themselves, do they have someone designated? You know, in a lot of states, like I live in Washington state, it's automatically your spouse. But what if that's not the right person? Or what if you don't have a spouse or whatever? In most states, this is a very easy thing to do, and it can eliminate so much time and trouble and headache if something does happen. And it's an easy way to get these conversations started about what matters, because you can say, well, you know, I just wanna make sure we're prepared for anything that could happen. And part of that is making sure that we know who you want to speak for you if you got too sick to say what you needed. Who would that person be, and how should we talk to them so that they know what you're thinking? I'd start there.

Pathak: Thank you so much. That is really just tremendously helpful information. I think it also speaks to the fact that the earlier—the more upstream you are and that where you can ask the question of your loved one—the better it is later on in the journey when you might have some more confusion around, what do they actually want?

Back: Exactly. And you know, in the healthcare system we're so often asking people to make high-stakes medical decisions when they're the most stressed, right? And that is not what we should be doing. So way earlier, when nothing is happening, it's a lot easier to pick somebody to speak for you and for the what-if situation. Whereas if you're on the way to the hospital in the ambulance, that is not what anybody can think about, right?

Pathak: Absolutely. I wanna thank you so much, Dr Back, for your time.

Back: This has been a great conversation. Thank you so much.

Pathak: I'd like to close this episode by sharing three of my key takeaways. First, palliative care is not the same as hospice, and it's not giving up. It is a medical specialty that can be involved at any age and at any stage of serious illness, with the goal of helping people live as well as possible and for as long as possible by focusing on symptom relief, quality of life, and what matters most to the patient and family.

Second, there is no need to wait for a crisis to begin an advance care planning discussion. It's important for families to start these conversations earlier so they don't have to scramble for answers when they're under extreme stress. Questions like, what activities of daily living are getting harder for you? What do you want your days to look like now? can open the door to honest discussions about the shifting level of need and what really matters without turning it into a purely medical discussion.

Finally, you don't have to have everything figured out, but it's important to take the first step. And one of the most practical first steps we can take is choosing and preparing a healthcare proxy. If you're unsure of how to begin that conversation, think about this question: If there ever came a time when you couldn't speak for yourself, who would you want to make decisions with your doctors, and what would you want them to know about your wishes? This can lay the groundwork for better care and fewer frantic, high-stakes decisions later on.

To find out more information about Dr Tony Back and The John A. Hartford Foundation, make sure to check out our show notes. Thank you so much for listening.

Please take a moment to follow, rate, and review this podcast on your favorite listening platform. If you'd like to send me an email about topics you are interested in or questions for future guests, please send me a note at [email protected]. This is Dr Neha Pathak for the WebMD Health Discovered Podcast.