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“Demystifying Palliative and Hospice Care: A Conversation with Dr. Jeff Stoneberg”

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Summary

In an enlightening conversation with Dr. Jeff Stoneberg, we explore the significant changes that have taken place in the field of palliative and hospice care over the last two decades. This dialogue highlights the evolving nature of care required by an aging population, particularly the baby boomer generation.

The Evolution of Palliative and Hospice Care

Palliative and hospice care have transformed considerably in the past two decades, reflecting broader changes in healthcare systems in response to demographic shifts. As Kevin opens the conversation, he emphasizes, “It’s terrific to see how much it’s changed in 20 years.” This sets the stage for a discussion on the reasons behind these changes and their implications.

Dr. Jeff Stoneberg responds to Kevin’s observation by highlighting a key factor: “It has to! We’ve got the baby boomers, right? It’s a growing population that’s in greater and greater need.” His comment underscores the pressing necessity for adaptable healthcare solutions capable of meeting the needs of an increasingly aging population.

Meeting the Needs of a Growing Population

The baby boomer generation is a significant demographic now entering the stage of life where palliative and hospice care become more relevant. With a higher life expectancy than previous generations, the demand for compassionate, well-coordinated care is more urgent than ever.

Dr. Stoneberg’s perspective illustrates the proactive measures healthcare providers are taking to accommodate this shift. Innovative care models, enhanced training for healthcare professionals, and improved communication between patients, families, and providers are just some of the ways the industry is evolving to provide peace and comfort for those at critical stages of life.

Looking Forward

This ongoing evolution in care practices is critical as the healthcare industry strives to provide a humane and dignified experience for everyone involved. The conversation with Dr. Stoneberg not only demystifies some aspects of palliative and hospice care but also reaffirms the importance of adapting to meet emerging healthcare demands.

In summary, the dialogue between Kevin and Dr. Stoneberg highlights the progress and continuing evolution within palliative and hospice care. As the healthcare system adapts to an aging population, it becomes essential to remain informed and engaged in discussions like these, which shine a light on the path forward.

By reflecting on the insights provided by experts like Dr. Stoneberg, we can appreciate the advancements in palliative and hospice care and recognize the efforts to tailor these critical services to better serve the needs of our aging population.

FULL TRANSCRIPTION:

Kevin: Thank you for joining us on the LightAtTheEnd.com Podcast. LightAtTheEnd.com is a resource for those who want to learn more about end of life topics, but don’t know where to start.

I’m Kevin Berk, and I’m joined today by Dr. Jeff Stoneberg, Medical Director of Palliative Care at Sutter Medical Center in Sacramento.

We’re going to be talking about what palliative care is, what it isn’t, who it’s for, how it can help, and what to expect from the experience as either a person who is beginning care, or as a family member.

Dr. Stoneberg – Jeff – thank you for joining me today!

Understanding Palliative Care

Kevin: Let’s start with how you describe palliative care to a person who’s not familiar with it.

Jeff Stoneberg: So, palliative care is really, you know, the people that I see usually have some sort of advanced illness, whether it’s heart disease, lung disease, cancer, neurologic illnesses… They find that they’re getting sicker and they maybe spend more time in the emergency department. They’re seeing their functional status decline.

And, my job is to help them understand what’s going on with their illness… to understand what’s important to them in terms of the care that they receive and, the quality of life, what’s important to them in regards to that, because everybody measures quality of life differently, and just help them sort of navigate through that. We do a lot of symptom control, we do a lot of advanced care planning, and, it’s really care for those last, you know, for people who are getting sicker, maybe in the last few years of life.

Differences Between Palliative Care and Hospice

Jeff Stoneberg: It’s very different from hospice. Hospice would be, you know, somebody who has a terminal illness, who, they know are not getting better, maybe their treatment options are dwindling , [they] don’t have any options for chemotherapy anymore, and they have a life expectancy of six months or less… then hospice can come in and help families take care of that person to make sure their symptoms are controlled, to make sure that the family is supported.

So for hospice, you have to have a terminal illness with, you know, again, with a prognosis of six months or less. For palliative care we focus on much of the same things, but I may be seeing somebody with, you know, a curative breast cancer who’s having pain or nausea, who’s having, you know, some increased care needs around the time of chemotherapy, and just needs that extra support.

So, we get involved with those patients as well. So not everybody that I see has a terminal illness, but they’re sick. We try to shepherd them through that and just try to help them live the best life that they can.

Kevin: You’re saying that people can start a course of palliative care treatment and then cease to need it.

Absolutely. Absolutely. And I think that… so using this example: the lady, you know, who might have breast cancer, and she’s going through curative treatment, when she’s cured and she’s feeling well, and her symptoms are controlled or resolving, then, you know, they may not have such a need for us anymore.

And so they, you know, go back to their… You know, there’s still managed by the primary care physician all throughout, they may enter a survivorship program, following, you know, their cancer treatment to help, you know, again, living with cancer is tough, and so having more support, even if you’re cured, you know, there’s experiences that you may have had that are disruptive to you.

And so, survivorship sort of takes it from there forward but, you know, we do see people who sort of graduate from our program, and the same can be true for hospice. Somebody gets on hospice and they’re very, very sick. Maybe they don’t have the support they need, they don’t know how to take their medications, their heart failure is getting worse… With the extra layer of support from hospice, those things might improve. And so, people can actually get better. It’s rare. It’s not uncommon, but it’s not what we usually see. But, those people who have that extra support may actually do better.

Their prognosis then is no longer less than six months. They graduate from hospice and then they may see somebody like me, after that. That’s a common mistake or a misunderstanding of palliative care is that it is the same as hospice, and although the things that we focus on are similar, it is very different.

Hospice and palliative care are often lumped together, so when I enter a room in the hospital to see a new patient, I tell them I’m from palliative care and oftentimes the reaction is, “whoa, whoa, whoa, we’re not ready. We’re not ready to give up.”

Kevin: Oh, OK.

Jeff Stoneberg: …and so that’s, you know, a conversation that we have to enter into about, “well, here’s what I do. Here’s what the situation is. Let me help you understand what’s going on with you here in the hospital. Let me ask you some questions and see what you really know, what you’ve been told, and make sure we’re all on the same page and starting from the same information.” So, you know, I think, you know, I’d have to do a lot of education, not just with patients and families, but with physicians alike, because they still have that confusion about “what’s the difference between hospice and palliative care?”

That’s a little bit of a hurdle that I think everybody in our field faces from time to time.

Kevin: Hmm.

Addressing Stigmas and Misconceptions

Kevin: Do you think there’s a stigma associated with just the phrase “palliative care”? Like, there sort of is with “hospice”. I think people think “hospice care” and they think, “oh, this is, this is the end. You’re going into a facility that’s going to take care of you, which I don’t know is accurate, right?

Jeff Stoneberg: Right.

Kevin: I mean, it can be, but it certainly isn’t necessarily. So do you feel like there is a stigma attached to even the term “palliative care”?

Jeff Stoneberg: Yeah.

The Role of Hospice in End-of-Life Care

Jeff Stoneberg: Well, let’s start with hospice. That’s sort of the easy, low- hanging fruit, right? So, whenever I bring up hospice to a patient or family, in my line of work, I ask them, “do you know what hospice is”? So I want them to tell me what their understanding is, and a lot of people will say, “well, yeah, I know what hospice is. It’s a place where you go and they’re going to give you morphine until you die.” and it’s always centered around death. Oftentimes it’s centered around a place – hospice is a place, and it’s not.

Hospice is really a philosophy of care: focusing on comfort and quality of life for people nearing the end of life. But when people tell me their impression of hospice, you’re right, it’s always around end of life. It always has to do with death and dying.

And I tell people, you know, I was a Hospice Medical Director in San Diego where I did my fellowship. I did house calls all day, which was great. I went into nursing homes. I went into hospitals and I was all over the place, seeing people in all kinds of different settings.

What I came to learn was, you know, what we have to recognize with somebody who’s on hospice is we have an illness that’s progressed to a point where it is no longer curable. We can’t control the illness anymore. It’s progressive and we can’t stop it. And so we have to understand and accept that notion and that idea that we’re not going to be able to change this course no matter what we do, no matter how aggressive we are, no matter how many dialysis machines and ventilators we use, things aren’t going to improve.

Really, once we accept that sort of understanding of the stage of illness and the course that we anticipate to see, then we can start to focus on, “okay, so we can’t change this, so how do we help you live as well as you can? Considering these, the constraints of this, this disease you have”, and so I really came to realize hospice, to me, is not about dying, you know – ultimately, it’s gonna be the end of life care, right? – but it’s really more about living, and how do we help somebody live with as much quality, with as much independence, with as much enjoyment and comfort for the rest of their lives, regardless of however long that might be. So, you know, that’s a conversation that I think is an important one to have every time that we’re talking about hospice.

There’s a lot of myths about hospice, misunderstandings. A lot of people will not want hospice because they’ve had a family member, or a grandparent who was sick and they decided to go on hospice. They left the hospital, they went home on hospice, and they died two days later after getting some morphine. And for many hospice patients, that’s their experience. That’s not because hospice came in and killed the patient. It’s not because they used morphine to control their shortness of breath or their pain. You know, morphine’s not going to shorten your life, if used properly. It might extend your life because you’re going to live better and you’re going to live, you know, if your pain’s controlled, you’re going to do more. You’re going to be more active. You’re going to maintain your strength maybe a little bit better.

But that experience that somebody may have with grandma coming home and dying a couple of days later after getting some morphine, that’s going to be their understanding of hospice. That’s their experience. And so when you’re talking now about their parent who might be sick and they associate that with, “well, no, I’m not ready for hospice because mom’s going to be dead in two days.” And so, I like to rephrase that. I like to, you know, dispel that misunderstanding of, “hey, yes, let’s talk about the situation about grandma and what was happening with her.”

It’s not the… “fault” is not the right word. It’s not the intervention of having had hospice that shortened somebody’s life. It’s the fact that hospice got involved too late. You know? So, hospice, again, is meant for the last six months of life. Studies will tell us that once you’re on hospice care for about three months, that’s the time that it takes to really experience the benefit, the full benefits of hospice, with the social worker’s support, the chaplain’s support, the nurse coming to your home, even a doctor coming to your home to make sure you’re comfortable. Those impacts are great, and they’re not really fully realized until after you’re on hospice for, for a little while.

When somebody’s very near the end of life, all you’re able to do is try to support the family in that time, you try to make the patient comfortable. We need to dispel some of those myths about hospice. In regards to palliative care, there is a stigma associated with what I do, because… gosh, I don’t know way back when, when palliative care started becoming a, you know, an idea of the field of medicine and, and filling a gap that, that existed in terms of taking care of people who are very sick, palliative care was lumped together with hospice. It’s “hospice and palliative care”. My fellowship was in Hospice and Palliative Care, my boards were Hospice and Palliative Care. They’re all lumped together, so even healthcare providers have trouble distinguishing between the two.

There’s a lot of times where I might be referred to a patient or a recommendation is that, you know, we have a palliative care consult in the hospital and the doctor might say, “well, they’re not ready for palliative care.” Well, that’s not really true, because I see people at all stages of disease, not just terminal illness.

Any time I’ve taken a new job or started at a new hospital where there hasn’t been a palliative care program before, or just starting out, that’s the first thing we have to do is to educate the medical staff about: “here’s what palliative care is… here’s what we do. Here are the type of patients we’ll help with. Here’s some examples of cases we’ve had in the past. And here’s why it’s different than hospice.” And, so to help them understand, you know, we want to swim more upstream from hospice for what we do.

Kevin: Is there a limit to how long somebody can be receiving palliative care? You’ve indicated they can go on and off it and with hospice care It’s that you’ve got six months or… or fewer left to live, right?

Jeff Stoneberg: Yeah, so, so let’s clarify something: so when people say they’re “on palliative care”, I don’t know what that means, right? So…

Kevin: “receiving palliative care?”

Jeff Stoneberg: Yeah, see, “receiving palliative care” is a great way to put it. So when you, when somebody says they’re “on hospice”, you actually sign some release forms and some agreements and stuff, that enters you into a hospice program and they’re now providing all the care that you’re going to need, right? So you are “on hospice”. Palliative care is just like being seen by a cardiologist. So if you’re in a hospital and you have, you know, some sort of heart arrhythmia and the cardiologist is following you along with your hospital team. You don’t say somebody’s “on cardiology”, right?

You say they’re being “seen by cardiology”.

Kevin: Alright, thanks for clarifying.

Jeff Stoneberg: And that’s, yeah, and I think that’s an important clarification to make because if you say somebody’s “on palliative care”, that gives the illusion that we’re not doing anything else but focusing on their comfort. So, it’s a big sort of distinction.

I think that’s important. so, I, I try to correct, you know, my colleagues that I’ve worked with in the hospital that, might say something like that and say, well, let’s talk, let’s, “you have a cardiologist involved”. He’s not “on cardiology”. You’re just, they’re, they’re helping with your care.

Kevin: Okay, thanks for clarifying that and correcting me.

Personal Experiences and Insights

Kevin: So, backing up a little bit, what brought you to the field?

Jeff Stoneberg: So, my residency was in internal medicine and I spent a lot of time working in the intensive care units and whenever we were on call, we were in the cardiac care unit or the intensive care unit. And, I was in a very poor city in South Philadelphia called Chester, and there was little access to health care.

People would come in with advanced AIDS, never knowing that they had HIV. This was in, you know, the early 2000s. They would come in with advanced cancers, never having been diagnosed. And there were some patients we’d admit to the ICU, and right from the emergency room, I could tell and say this: that person’s never going to survive. They’re never going to leave the hospital. and I can keep them alive. We can keep them alive for another couple weeks, but it’s going to be torture. I’m going to be forced to be doing central lines and thoracentesis, you know, taking fluid from lungs and fluid from bellies and putting people on ventilators, breathing machines, sticking tubes down their noses, down their throats, and send them in for all kinds of studies that are painful, and we can extend their life, but prolongation of life and recovery are two different things, right?

Recovery is a return to a prior state of health where, elongation of life is just that: keeping the heart beating, regardless of how you might have to do that, and I felt like I was torturing people. And I really enjoy the ICU. I like the medical complexity of it, but I, I also don’t like what people have to go through, and I felt that there’s gotta be a better way to approach these really sick patients who you know are never going to get better. And so that’s when I, you know, during my residency, I started to look around and do some research and that’s where I found palliative care.

I went out and did a month-long rotation in San Diego where I did my fellowship and I just fell in love with it. It kind of resonated with me. I was kind of drawn to the sickest people in the hospital, in my residency, and I was having family meetings not really knowing what I was doing, but felt like the right thing to do to help people sort of understand what’s happening. I didn’t have any training in it. Nobody was teaching me that in my residency. So I sought it out myself.

Kevin: When you said you didn’t feel like you knew what you were doing, that you were just kind of feeling your way through it, presumably with a healthy dose of empathy and figuring it out as you went along. Was that because there wasn’t a strong program for it?

Jeff Stoneberg: good question. so, this was in 2002, 2003, I think, somewhere in there. Palliative care was not part of our curriculum in internal medicine. it was not a recognized subspecialty at that time. So there was no really formal education in medical school that I had about palliative care. I had maybe part of an hour lecture about hospice in medical school.

So I knew what it was, but it was kind of foreign to me. So there was really no formal education at that time when I did my fellowship 2004 to 2005. I completed my fellowship, I took my boards and then palliative care became a recognized subspecialty in 2006. So, I did take a different set of boards again in 2006, but that’s when it started to become more mainstream.

Now palliative care is part of your medical school curriculum, it’s part of your family medicine, internal medicine rotations, oncology fellowships are all participating in palliative care and learning about “how do you have these conversations, how do you approach these situations, how do we better manage symptoms?”

So it’s a very different time now, than it was when I was in my residency and I spent a lot of time teaching our own family practice residents, medical students, nurses, you know, all about palliative care. So that’s a big part of what our program does.

Kevin: It’s terrific to see how much it’s changed in 20 years.

Jeff Stoneberg: It has to! We’ve got the baby boomers. Right?

It’s a growing population that’s in greater and greater need.

Palliative Care Team and Their Roles

Kevin: Who typically makes up a palliative care team and what roles do they play in supporting the family and the individual?

Jeff Stoneberg: Palliative care, like hospice, uses an interdisciplinary team. So, that typically might consist of a physician, nurse, social worker, chaplain. That’s kind of your core set of people you might have. We work a lot with our pharmacists because we might use drugs at doses that others are uncomfortable with.

You know, in terms of pain medications, we might use other medicines for the intended purpose of the side effect rather than, you know, why it was originally approved. you know, just to manage symptoms. So pharmacists are important. But there’s four main categories. I think are all really important.

People are very sick. They’re having existential crises, whether it’s religious or spiritual so chaplains are crucial in helping to understand that. Social workers are so important to sit at the bedside and help to talk through, you know, what they might be feeling psychosocially.

Are they feeling isolated? Are they having, you know, marital, relationship problems? Are there financial issues that have to be sort of addressed? There are caregiving issues. There’s, you know, where can they live if they can’t live by themselves anymore? So social workers are crucial.

On our team we have four nurses, three docs, a social worker, and a chaplain all in the hospital on our team. And we use everybody.

We try to understand, you know, what are the, if it’s more complex patients, somebody in the intensive care unit, for example, and on a ventilator, that might be somebody that I’m going to see, somebody who is less complex and a little bit more mainstream, the nurses are really great at, helping patients understand their illness and helping talk through advanced care planning and code status. They don’t do the symptom management, that’s left up to us, the docs, but we co-manage right alongside with them. And, our nurses are absolutely amazing.

Referral Process and Criteria

Kevin:So how and when is a referral made to palliative care?

Jeff Stoneberg: So we have, like a referral criteria guideline list to help the docs tell us when to do that. In our hospital, you need to have either a physician’s order – so, you know, you have a hospital that’s usually taking care of the patient and in charge of their care in the hospital. They’ll bring in consultants as they see fit.

So we would need an order from them in order to do that – or it can come from family requests. So if you’re there and you’re in the hospital and your family member’s sick, and you want to talk to somebody, you can request the palliative care consult and we’ll come at that request, but typically reasons might be like: somebody who has frequent emergency room visits, frequent hospital admissions, people whose functional status is declining, people who have progressive weight loss, metastatic cancer, newly diagnosed cancers, anybody with advanced illness and symptoms related to that.

We see a ton of people in the intensive care units, people who may have, you know, really bad emphysema from smoking for years and years and now their lungs are pretty shot and they end up on a ventilator and they’re never going to get off that ventilator.

And so they may bring us in to help talk with the families and help them understand, “hey, this is what’s this is what’s going on. Here’s what our expectations are. You know, we’ve been trying, but we’re not going to be able to get this person off the ventilator to breathe on their own again.”

So now we need to talk about “how do we move forward? Would this person want to be kept alive artificially by a machine for the rest of their life”, you know, which would need the tracheostomy in the neck for the machine attached to a feeding tube to give them nutrition and then living typically in a specialized nursing facility where they can get the care that they’re going to need to stay alive?

And was that sort of the quality of life and what they would foresee them wanting? Or if they wouldn’t want something like that, sometimes the decision is to remove that ventilator and to remove it in such a way that the patient’s not suffering with shortness of breath. They’re not gasping for air. They’re not in pain. You have the family around the bedside. You might have their pastor, priest, or chaplain at the bedside and doing so in a way that we know their symptoms are going to be controlled, and give them the best opportunity to breathe off that ventilator on their own, but with the expectation that they’re going to be weak, they’re going to be hypoxic, they’re not going to be able to maintain the support their body’s going to need from their lungs.

And so we expect them to die, but we do so in a way that keeps them comfortable. We had to do the same thing with my mom. She had pancreatic cancer and she went through chemotherapy, radiation, and she was ready for a major surgery to try to remove the cancer. The surgery went way longer than we expected and she had complications with bleeding, went back and forth to the operating room for, you know, over the next two days, a couple of times. And, when things really started to get bad – and I knew they were bad way before I think anybody else did, cause this is what I do all day – we had to make the decision to let her go because the best possible sort of scenario for her would have been unacceptable.

And so then we knew we were crossing a line and, We chose to remove her from the ventilator and, it was a, it was a tough decision because, I had to kind of argue with the surgeon a little bit to, to say, “look, you know, I know where this is going, my mom wouldn’t want to live the way she’s going to have to live on, you know, probably with machines and feeding tubes and things like that. She wouldn’t want any of that stuff. So we’re going to stop.”

It was really eye opening to me because I had to sort of tell the surgeon what to do. I had to get the ICU doc who was really wonderful, to say, you know, “we’re now in charge and we’re the ones that are gonna make some decisions here, and this is what I want you to do: I want you to get some morphine. I want you to get the priest here.” My mom was Catholic, and I want to, you know, just my dad and I there at the moment and, I said, you know, “we’re gonna let her go.” So, you know, I, I can identify with the patients that I have who are on ventilators that aren’t going to get better, and when we were in that scenario, I do share with them, you know, “this is the scenario I went through with my own mom and these are the decisions that I made.” And looking back on it, I know that we did the right things for her because we’d had those conversations about what was important, and we were following her instructions and I wasn’t making decisions on my own, so just doing what she wanted us to do.

You know, I described the difference between palliative care and hospice earlier, but a lot of the patients that I do see may be during the end of life. and so we’re helping with that transition to hospice. And sometimes, you know, we get somebody off a ventilator, they might live for a few days, but I’m having to adjust medications throughout in order to maintain their comfort. And so in those circumstances, I can’t really have them outside of the hospital somewhere else because what I’m having to do is a little bit too complicated for a nursing home or at home. So in those cases, we might actually have hospice inside the hospital to collaborate with us to help care for the patient and support the family.

And that’s a provision that hospice has to be able to care for somebody inside of a hospital type setting where we need to do more advanced things. You know, a lot of pain and symptom management. We draw a very distinct line between pain due to an underlying illness, versus, like, you had a car accident in your twenties and you have back pain. In your fifties, it’s chronic pain. That’s not really what we’re built for.

We really try to help out however we can. I used to have an internist I used to work with in San Diego who would consult me all the time, number one for communication, English was not his first language. He wasn’t real comfortable having a lot of these conversations. So he would use us for those types of things. We’ll talk about goals of care, to provide patient education. Sometimes the consult will be like, “I don’t know what to do with this patient. Can you help?” sometimes it’s education, you know, to help families understand. We talk about code status, resuscitation status, you know, the person’s heart stops. Should we be doing CPR? Should we be putting them on a machine, should we be doing CPR where we might be breaking ribs, you know, a lot of these people are very infirmed.

And so when families think about it, “yes, I want you to resuscitate them” without really realizing what we’re going to do. We’re going to hurt that person. And the outcomes that are expected are not going to be good. We’re not going to return them to how they were two years ago.

Kevin: When people come in for that initial consult, do they frequently have family members with them? Or perhaps a better question is, “should they have family members present? Does it depend on the situation?”

Jeff Stoneberg: I think you should always have an advocate in healthcare, somebody to listen to the conversation. So they can hear what the doctor’s saying. I think it’s always great to have a spokesperson. You should have an identified surrogate decision maker, somebody to make decisions for you if you can’t yourself.

But we always try to include, you know, if there’s durable power of attorney, which is, you know, the person designated to make medical decisions when, when that person no longer has capacity to do so, I always want them included. I want, I want families to hear what’s going on, whoever’s important to that patient, we’ll ask them, you know, “who do you, who’s important to you? Who helps you with decisions? Who do you want to hear this information?”. So if we’re going to have, like, a family meeting, I want to have the right people in the room. A lot of times for a patient by themselves, you know, we’re, we’re sharing tough news. I don’t get to share good news in my job – I share bad news in my job. And, when you hear bad news, you don’t hear much after that. Right. And it’s got to sink in. And so having somebody to help listen to that is important, take notes. Whoever that person’s support system is, we want to make sure that they’re available and included.

Kevin: That’s a good point.

Palliative Care Settings: Home vs. Hospital

Kevin: So, palliative care can be provided within a hospital setting or at home, correct?

Are there benefits or challenges to receiving palliative care at home versus in a health care facility, besides convenience and, and probably the, emergency kind of situations that might occur?

Jeff Stoneberg: Yeah. So every palliative care program is going to be different. So I run the program in our hospital, and we see patients on the inside. We also have a clinic where we see outpatients and people that aren’t admitted to the hospital. So I spend a half a day a week over there seeing patients.

We have an outpatient team, again with a social worker and so forth. With COVID, as terrible as COVID was, it had some, some positive outcomes and one of those is telemedicine. So you can imagine my patient population that I see getting out to a clinic or an office can be challenging. They may be somewhat immobile, transportation issues may be a problem.

And so telemedicine has really expanded our outreach. So a lot of most of my visits are video visits, televisits in the clinic. I certainly love to see somebody in person, but sometimes it’s not possible. So that allows us to extend our outreach significantly to provide care for our patients.

More robust outpatient programs… we have some in Sutter right down around the Stanford area. They have a very beautiful, robust outpatient palliative care program. And so they’re doing house calls all day. So they’re going to patient’s homes. They’re going to nursing facilities, seeing them in person, with a mixture of video visits and clinic as well.

I think for providing… walking into somebody’s home, you need a large program, you need a lot of resources to do that, but I think there’s great value in that too, to have the doctor walk into your home and sit down on the couch next to you and talk to you and ask you how you’re feeling, and come up with some solutions to get you feeling better, I think has a huge impact, and I wish we had the resources to be able to do that on a regular basis.

First Steps in Palliative Care

Kevin: What should someone expect emotionally and physically when they’re beginning palliative care?

Jeff Stoneberg: I think the first thing to really realize is we don’t bite. We’re nice people, we’re here to help. What I try to do if I’m first seeing somebody, the first thing I’m going to try to do is to establish some rapport. There’s two things I want to do in that first visit. I want to establish some rapport, so I get to know who this person is, get to know a little bit who their family is, what their life is like, what do they like to do, what’s their physical activity, you know, what challenges can we identify, and really just getting to know that person and get comfortable with them and allowing them to get to know me and get comfortable with me.

You’re probably going to talk about some difficult things over time, so you want to have a comfortable setting and, and, and be in a safe space to, to, to have that communication.

The other thing I try to do is just to make sure we have a common understanding of the medical facts. So that we’re all working from the same information.

You can’t make good decisions without good information. And so, it’s important to, you know, ask people, tell me what you know, what have you been told about your illness? and that does a number of really great things for me. It helps me understand, okay, does this person know the extent of their lung cancer and it’s no longer curable, or do they have this misunderstanding that they’re getting chemotherapy and that’s going to take care of cancer and they’re going to be done and it’s going to be cured in two months? So we all have to have the same understanding.

So if I do nothing more than establish some rapport and make sure we’re all working from the same information, that’s a success for me.

Of course, we’re going to assess symptoms, symptom control’s going to be important. We’re going to dive into things, usually over time, about treatment preferences, what does somebody want from their care, their level of independence? I think it’s important.

It’s just as important to know, you know, what somebody does not want as much as what they do want.

Advanced Care Planning and Directives

Jeff Stoneberg:So recording conversations about, advanced care planning, filling out advance directives, talking about POLST forms, which, which we can get into as well. But. You know, starting to really, understand what, what’s important to somebody and what we’re going to try to achieve with their medical care.

Kevin: So basically you’re trying to work with people at the point that you’re establishing rapport to figure out what they’re going to be comfortable with and, of course, get that documented with the advance directives, but you’re trying to give them a sense of control over the care that they’re going to receive or not receive.

Jeff Stoneberg: Yeah. So advanced care planning consists of things like advance directives and POLST forms and an advance directive is a document that people fill out that asks them a bunch of questions. If you were to be very sick, where would you want to be?

Would you want to be at home in a nursing facility, in a hospital? quality of life independence, and it really helps to formulate a better understanding of what’s important to that person.

it’ll allow you to designate a durable power of attorney for health care. So who’s the person that’s legally going to be able to make decisions for you if you’re confused, or I can’t wake you up, or you’re in a coma, you know who’s going to make decisions for you? So having that done is a huge benefit especially when you’re in the hospital because decisions are going to have to be made.

You may have to consent for a surgery or blood transfusion and you need to know who to go to.

Personal Story: Implementing advance directives

Jeff Stoneberg:When my mom was sick, we filled out an advance directive for her and, you know, we had a very long conversation about sort of what was going on with her cancer and, you know, what was important to her for how she lives her life and, and what are some situations, you know, she would not want.

She never wanted to be resuscitated. So, we were able to identify that on there.

She didn’t want to live on a ventilator. She would accept a ventilator after her surgery for, you know, if there was a complication or if she had to, you know, be on it for a couple of days, that was okay with her.

She never wanted a feeding tube.

She never wanted to be in a nursing home. She always wanted to be home with my dad and her family.

She was very afraid of pain. So pain control was really important for her.

And so we recorded all this stuff down and we kept that document with us when she was in the hospital. And when, you know, things started falling apart for her and she started having heart arrhythmias and blood pressure problems and still was on the ventilator and still bleeding, I pulled my dad aside and I said, “dad, let’s pull this document out and let’s take a look at it.” And I explained to him what was going on with her from a medical standpoint. We read through the document. I said, “these are mom’s words. These are what she told us to do.” When the surgeon told us that the, you know, the best possible outcome for her was a nursing home with a feeding tube.

These are two things on her list we know that she would not want. And so we were then crossing a line and decisions to keep her alive would have been for us, not for her. And so we realized we need to honor mom’s wishes, and that’s what led to the decision to allow us to let her go. And so that’s, you know, that’s just an example of my example of, an advance directive that was personal to me and, as difficult of a decision as that was, I knew it wasn’t our decision and I knew it was the right decision because it’s what she told us to do.

And I’ve never once second guessed that.

Challenges in Family Decision-Making

Jeff Stoneberg:I can’t tell you how many times I’ve been in meetings with families whose, you know, family member has multi organ failure, they’ve got kidney failure and respiratory failure, and heart failure, they’re never going to get better… and they’ve never had a conversation about “what do I want with, you know, if I’m very, very sick like this?”

you really have to sort of try to dig deep with the family to understand who this person is and what would they tell us to do in this situation? That’s really the answer, what we’re looking for is “what would this person tell us to do?”

And it is so incredibly difficult and challenging to do that, and so stressful for the families, because they don’t have certainty as to what decision they’re making, because those conversations don’t take place.

When there’s an advance directive, I pull it out, I print it out, we hand it out, and say, this is the advance directive, let’s read it, let’s see what it says, and then help them interpret it. You know, and so this is when they check this box, this is what this means. So, it helps to guide the care and to make sure the care that the person receives is the care that they want.

Kevin: Assuming somebody comes in for an initial consult with you and your team, is establishing that advance directive – if it doesn’t exist already, if they haven’t previously done one – is getting that filled out and filed paramount, for you and your team?

Is that the first thing that you recommend?

Jeff Stoneberg: It is, it’s something we’re going to introduce. I’m going to introduce that maybe on my first visit or early on. If they have one, I review it. I understand, make sure they understand what it means. I review it with them and, and make sure that that’s still consistent with what they want. Advance directives are difficult for many people to fill out. I think, you know, when you sign your name to something, there’s a finality to it, there’s a commitment to it, and some people have a pretty strong reaction to not completing those. So we try to understand what’s important to them in other ways and document them in the chart and differently, but, I don’t press people on it.

I think it’s something that people, it’s something that takes place over multiple visits and conversations. They may complete a document, you review it with them, clarify it, you know, edit it before you get to the final version of it. So it’s a process more than it is just a checkbox on the form.

But I kind of move at whatever comfort pace the patient is willing to do. It’s important. I think there’s only one of my patients in my clinic who doesn’t have one, and that’s just because he won’t discuss it with me. So, but it is something that I think our service prides ourselves on and making sure that there’s some documentation to tell us what the patient wants.

And it’s really important.

Kevin: Are there other things that people can do to optimize their palliative care experience?

Jeff Stoneberg: That’s a tough question to answer. I don’t really know. I think just being open to, to what, to a palliative care physician or nurse or social worker, chaplain, just being open to, to meeting with them and understanding where they’re coming from, Those that are really resistant to me initially, it’s kind of like a little bit of a, you know, a little bit of a struggle sometimes to, to get things moving forward.

And that’s why that rapport is so important. Those that are very open to palliative care and are welcoming of what it is that we do, I think, have a better experience. They’re more engaged. More open to suggestions that we might have or recommendations for managing different symptoms. So it’s a tough question to answer, but that would be my, I guess, my answer to it.

Role of Family in Palliative Care

Kevin: So what’s a family’s role in a typical palliative care scenario? In theory, you’re getting quite a lot of support from the family, assuming you have that.

Jeff Stoneberg: Yes, all families are different. I know I was super fortunate in my life and I recognize that every day at work that, you know, my family is very loving and very supportive of each other. Not all families are. There are people that are estranged from their families for various reasons, and those create really tough situations, but like I said before, I think everybody needs an advocate. Typically, those are family members, and I think that when we, when we look at palliative care, we don’t, you know, if somebody’s getting sicker, it’s not just that patient that’s getting sicker.

It’s the family that’s going through it as well, whether it’s the spouse or the adult children or, you know, whoever it may be. They’re going through this as well. And so they need support and that support is available. You know, we look at the patient and the family as sort of the unit of care.

Our social worker will meet with, you know, a husband and wife who are having, you know, some struggles, and to help them sort of guide them through that because of the stress that it places on the relationship with their, you know, progressive sickness. So I think patience and patient and family support, family support of patients is huge.

Again, having an advocate, somebody to listen and to, to take notes. and somebody to reach out when they feel that the person’s not doing well. You know, so I get more calls from husbands and wives than I do from patients, because they may notice that the patient’s acting a little differently or their pain’s not controlled, as well as we’d like it to be.

So we need to make some changes. so family plays a huge role in it. and families, whoever that patient tells me their family is, you know, I’ve had, situations where we have a homeless person who was found down and we don’t have any identification. And so, you know, we were able to work with a homeless coalition in Berkeley when I was there and find somebody who knew them.

And although this person didn’t seem to have any family, they were terminally ill, they were very, very ill, and they were going to die. But this person was kind enough to come in and help us understand what, you know, who this person is to the best of their ability. and that provided us with a little more information to know that, along with our ethics team, we were making the right decisions and letting this person go and not doing more procedures to them that weren’t going to accomplish a recovery. That friend who came in was really instrumental in making sure that we were doing the right things for that person, and we had a confidence level that we were doing that. Without that person, without that advocate, we would have been guessing just like the family was, you know, if they’d never had these conversations.

So, you know, family is crucial. And again, family exists in all kinds of different forms.

Managing Caregiver Burnout

Kevin: So I’m not sure how to ask this, but presumably exhaustion and burnout are real things for families that are trying to care for their loved one. And so you’ve mentioned that your job is to support not only the individual, but the families as well, who are helping to support that individual. So, if a family is struggling with that, or somebody requires full time, or nearly full time care, and they have jobs to go to or they have things that they must be doing, is that where you have in-home nursing come in to provide additional support to the family and the person?

Jeff Stoneberg: Those are tough situations because, you know, you kind of hit the nail on the head, you know, people have jobs, they have lives. So you have a elderly parent living alone who now needs more assistance, but you know, you’re, maybe you’re in your, your forties or fifties, or you have young kids at home and you have a job and you need to keep food on the table and you need to care for them and you can’t spend all day at your parents house.

Those are real world problems that exist every single day. Or you have somebody who is, you know, elderly, has dementia and their spouse is helping to take care of them, and now they’re having behavioral problems and they’re getting abusive, and they’re requiring more physical care.

That little old lady can’t do it anymore. So, identifying, you know, who needs the care services, sooner than they present themselves can help you make sure that they have care in place before a crisis occurs, if that makes sense.

Kevin: Okay.

Jeff Stoneberg: What I follow a lot along on is what we would call performance status.

So what’s somebody’s strength? What’s their endurance? What are they able to do physically? Are they going up and down stairs? Are they doing laundry? Are they going out to dinner? Or are they spending all the time in their reclining chair? Are they spending all the time in bed? And if I start to see those things sort of declining over time, Somebody getting, somebody’s getting less active, somebody’s getting less, you know, independent… the sooner we can be aware of that and to have to start putting a plan in place. So that we don’t get to the point where they’re left alone and they get found on the floor because they haven’t been heard from for three days, we can make sure that we had a caregiver going over there to check on them, you know, every afternoon, or setting up some sort of, you know, system between siblings who can be checking in, on a parent who might be having trouble.

So you can start to identify who might, who’s going to be in need of that before something happens. and sometimes the care that’s needed at home outstrips what can be provided at home, and you need to look at things like maybe a nursing facility or a boarding care or, you know, in-home nursing care where, you know, you hire in somebody to come in and help out.

I think the earlier you can identify that, the more you’re going to be able to keep people at home safe and out of the hospital.

Transitioning to Assisted Living and Hospice

Kevin: In a case where somebody needs to go into an assisted living program or, or have, that kind of care, does that overlap with their palliative care through you? Does that become the responsibility of the facility that they’re working with? Or does that facility work with your team?

Jeff Stoneberg: So, just like if you had the cardiologist taking care of your heart and you went into a nursing facility, the cardiologist is still going to take care of your heart. So it would be the same for us, you know, regardless of the place of residence, wherever the person might be living, our team would remain involved. If they moved from one place to the next, we would still remain involved.

If they go into a hospice program, if we start seeing somebody who has a progressive cancer and they’re still going through chemotherapy. They’re not, they’re not really appropriate for hospice, but we’re seeing them from our palliative care service, we will continue to manage them all the way up until their goals might shift to be consistent with hospice.

And when they might say, “okay, it’s ready. I just, I don’t want to go through this chemo anymore. I just want to be at home with my family. I want to be comfortable. I want to live and do as much as I can.” then that would be consistent with hospice. And, so then I would hand over the care to the hospice program and they would become the primary provider for that person’s care. so that, that would be really be the only reason that I would, sort of, maybe not see somebody any longer, is if they were going to go on hospice because I know that they’re going to have the same level and the same type of care, or actually a higher level of care and support at home than what I would be able to provide.

Kevin: Okay. Do you have any suggestions as to how a family can start to have the difficult conversations with somebody, and whether that is “you really need to… we really need to figure out what it is you want for the rest of your life.” The “quantity versus quality” discussions and the advance care directive discussions and the, “are you safe to be at home by yourself?” [conversations]? Are there ways that you have seen or have heard can be successful for a family member to initiate those discussions?

Jeff Stoneberg: I think it really should start with your primary care physician, to be honest with you. And I think bringing that up to them and saying, we want to, we want to have this discussion, I think it’s hard for, for families without having had that experience, to just dive right into it.

There’s a lot of – I can’t cite them off the top of my head, but – I know that there’s a ton of resources out there to help with these types of things. There’s a document called Five Wishes. Five Wishes is a very, very extensive, medical decision making guide, that ultimately comes out and with an advance directive type of form, but it kind of walks you through that discussion, and asks a bunch of questions about a bunch of different things that, that ultimately give you a really robust idea of what’s important to somebody, everything from spiritual to medical, it’s a great resource actually, and I know that there’s other websites and there’s other, programs that can, really help guide that family discussion at home, but I think, starting with that primary care doc that you have that hopefully they have a relationship with is a really great place to start. They can provide the documents that you need and some guidance about how to do that. But I think having it in the presence of a medical professional who’s familiar and doing these types of conversations is really helpful to guide through it.

Kevin: Is palliative care presumably covered under insurance, just the same way as your primary care is, assuming that you have that? Medicare? Medicaid?

Jeff Stoneberg: Yeah, it’s, you know, I work for Sutter, so we take, you know, Sutter insurances, we’ll take Medicare, MediCal, there’s other insurances that we don’t take. You know that, you know, we’re not going to take, we don’t take Kaiser insurance. So that person would, if he was involved in the Kaiser program, they’re going to see a Kaiser Palliative Care doc.

But yeah, we’ll see a variety of insurances. It’s paid, we bill insurance just like your, you know, all your other medical specialists would.

Kevin: Okay. So there are going to be out of pocket expenses just as there would be any kind of medical…

Jeff Stoneberg: There might be an office visit. Yeah, like whatever your office fee is you may have that, we bill insurance for every, for all the reasons.

Kevin: How critical is it to financially prepare for your own end of life or your family member’s end-of-life?

Jeff Stoneberg: Yeah, that people have things like long term care insurance, which those policies are, are very different across the board and what they’re going to cover, what they’re going to provide, what you have to exhaust before you access those funds. If you’re going to need things like getting home care, for stretches of time or towards the end of life, then I think those policies are going to really be great if you have a really large family that’s really supportive and able to provide care that you might need, that may be less important.

 Our service doesn’t really cost a whole lot. You know, we’re not, we’re not expensive. You know, again, we bill insurance and we’re not going to be a big cost to the patient themselves but when you get into things like needing care in the home, needing transportation to and from dialysis, for example, you know, those things start to add up. Those things start to get pricey. Insurance may not cover all those things.

Kevin: Okay.

Coming back for just one second to the advance directives again…

Legal Documents and POLST Forms

Kevin: Are there other legal documents or preparations that people need to have or need to work with somebody to create in advance of getting to a stage where they’re needing palliative care?

Jeff Stoneberg: So, think of an advance directive as “what do I want for my future care if something should happen?”, “what’s acceptable to me and what’s not in terms of quality of life?” There’s another form that we use called a POLST form. It’s called Physician’s Orders for Life Sustaining Treatment, P-O-L-S-T.

It’s on bright pink paper if you’ve ever seen one, and it’s meant to be bright so that you can see it. And, The POLST form is more asking questions about “what do I want the medical team, the emergency personnel, the ER docs, what do I want them to do right now? If I drop to the floor, or if my wife comes home and finds me laying on the ground, what do I want them to do?”

And there’s three main questions on that form. The first question is do we or do we not try to resuscitate somebody if their heart stops? The second question is, helping to identify sort of how aggressive should we be with somebody’s medical care if they enter the hospital. Would they want to be on ventilators? Would they want dialysis? Are they very, very sick? Should we just be focusing on comfort only? You know, relieving symptoms without doing a whole bunch of tests and poking them with needles, or anywhere in between. And then there’s a third section about artificial nutrition. And when that form is completed, it’s signed by the patient or their representative, and it’s signed by the physician.

When that’s done, it becomes a physician’s order. And so when, so with, for example, if the EMTs are called (you’re instructed to put this form on your refrigerator.) The EMTs are trained to look for it there and they will follow it. Otherwise, they are required by law to try to resuscitate somebody unless they have this form. So this form becomes really important when somebody starts to want to limit interventions that they know they don’t want done so… cardiac resuscitation if your heart stops. If you don’t want us to do CPR and pound on your chest and shock you with electricity and put you on life support machines, then you need to have this document that says don’t do that.

 It becomes protective of the patient against unwanted care, but it sort of tells the emergency room, the docs in the hospital, the people that are providing that immediate care, sort of what, what to do and what to avoid. So that, and the advance directive in the POLST form, I think they should be complimentary.

They should be sending the same message, saying the same thing. You don’t want one saying one thing and the other saying the other. So as somebody’s condition may change, as they become weaker, as they become sicker, they may say, my POLST form. Used to say, yes, resuscitate me. And now I don’t think I want that.

We’re going to complete a new one. So as somebody’s goals may change and their treatment preferences may change as they get sicker, you want to update those documents to be reflective of what their current choices are.

Kevin: And how does one fill out a POLST form?

Jeff Stoneberg: You can request it from your physician’s office, from your primary care docs office, and they’ll give it to you and they should review it with you and review your selections. There’s some nuances to it in order for it to really reflect what an individual wants. There’s certain ways that the form should be filled out.

There’s certain ways that the form would not make sense if it’s filled out in a certain way. There’s another area on that form that just says additional orders and it’s a couple of blank lines. So you can write whatever you want in there to really make sure that that person is getting the care that they really want for themselves.

But you should go through your physician’s office to do that.

Kevin: Is the POLST form and the advance directives is that, are those documents the same state to state or…?

Jeff Stoneberg: They’re variable from state to state. I mean, the POLST form, there are a lot of states that use the POLST form that we use here in California. There’s other states that have, like, a MOLST, M-O-L-S-T, Medical Orders [form]. But they’re all pretty similar. Advance directives,.

I just printed off a website, the one that I use at work. That’s the one that we used for my mom. It’s the one that I use for myself, and those can travel with you. If, if there’s a document that exists that looks like it’s legitimate, and somebody took the time to fill this out, I hold that in pretty high regard because they’ve taken the time to do that and to put down their wishes and regardless of what state it’s from, I’m going to, I’m going to give that some pretty heavy weight.

Final Thoughts on Palliative Care

Kevin: You mentioned a little bit earlier about what a transition might look like from palliative care to hospice care, but I wasn’t clear on whether or not there was a continued relationship. On the one hand. It sounded like you said that there is a little bit of a handoff where you’d be working with a more dedicated team if it gets to that point. But there was  something that you said early on that made me wonder whether there is a continued, I don’t know, synergy of care.

Jeff Stoneberg: We work very closely with hospice and typically it’s usually a one way street. You know, we’re seeing somebody earlier on in the disease process. I’ll give you a great example: I have a really sweet lady who had ovarian cancer in Berkeley and she started seeing me in my palliative care clinic down there because she was having some pain. She was still going through chemotherapy. She was still wanting aggressive treatment, wanting to prolong her life as long as possible, and she was really focused on longevity. So I was helping with some symptoms. We did some advanced care planning, we completed a POLST form. She wanted to be  full resuscitation. She wanted to be full treatment without any restrictions, including ventilators and dialysis, whatever to keep her alive.

And as she got sicker, she ended up having an experience where she was in the hospital. This was her first time in the hospital and there was a doozy. She had a liver abscess which communicated up into her lung and it was making her really, really sick. She had to have drainage tubes placed to drain infected fluid. She was on antibiotics for a few weeks. She was having all kinds of tests and things done in the hospital and that experience, she said to me, “Is this, is this what it’s gonna be like?”

I said, well, “as you get sicker, the, the things that we need to do to keep somebody going to generally increase and we may need, may need to do more to keep somebody going.” She says, “If it’s gonna be like this, I don’t want this. I want to feel well, I want to live long, but I don’t want to live like this. And so that experience changed her, her decisions. And so in the hospital, we completed a new POLST. She did not want to be resuscitated. She did continue to want to be treated with antibiotics. She wanted to be treated for reversible causes of illness. If, you know, she had pneumonia, let’s treat her with antibiotics to get her better. If she needed a blood transfusion, we’ll do that. She still wanted to pursue chemotherapy, and so she was still pursuing that. And as she got sicker and the chemo became less effective, her symptoms started worsening. And so she was seeing me to attend to those symptoms and keep her feeling well, keep her pain controlled, and keep her out of the hospital.

And then she got to the point where she was really starting to struggle a little bit more. Her weakness was worsening. Her independence was worsening. And she just wanted to be comfortable. She and a partner had a house on the coast. She wanted to go to her cabin on the coast.

And, she was able to do that once with me, but she was, I was following her with palliative care and she ultimately moved over to hospice. She was able to go to her cabin again while on hospice. And, but I kind of handed over her care to the hospice team. I still told her and her partner, you know, I’ll always be a resource.

You can call me with anything that you need. You want to talk, you have questions, you’re not comfortable. I’ll be happy to collaborate with the hospice team and make sure that they’re hearing what I’m hearing, and can make changes appropriately.

But I really, you know, I don’t have the bandwidth and capability to go see her at home and to see what her needs were, but the hospice team does.

And so they can continue to do that. and they can, you know, continue to report back to me and give me updates on how she’s doing. I could elect to be her hospice doctor. It could be the hospice medical director, which is what I typically recommend because I can’t fill that role. But as a, you know, as a palliative care doctor, I could, I could have chosen to be her medical doctor for hospice.

Her primary care could do the same or an oncologist could have done that. But it’s tough these days with the number of patients and the volume that you see to be carrying, you know, a load of patients who are really sick at home. And, so I generally hand that care off to the hospice doctor, but I’m always, I always make myself available for whatever they might need.

Kevin: Okay, that makes a lot of sense. Do you ever find that people have established early on what they think they want, they get into a place where they’re not able to communicate for themselves, and then their family is trying to say, “well, there’s no way that they want this.”

Jeff Stoneberg: Yeah, you see both sides of it, really. You see somebody has an advance directive or some document that says, “I want to be full resuscitation, full treatment. I want to live as long as I can. Yes, I’ll take a feeding tube. Yes, it’s okay to live in a nursing home…” and sometimes you get situations where, you know, maybe I have a person that has a cardiac arrest and they’re resuscitated and it takes 30 minutes to get their heart beating again.

And now they’ve got, you know, a brain injury because they weren’t getting blood and oxygen to their brain. And they’re in a persistent vegetative state. They’re never going to live off of, you know, machines or feeding tubes. And they’re never going to really know that their family’s at the bedside.

They’re never going to communicate. They’re never going to eat. And sometimes you say you have people saying, “yes, this is what they would want. [They] filled out this form. We’re going to follow that form to the T” without any consideration of what the outcome is going to be. You have other people that might say, “yes, they wanted to have all these things done. But we know my dad. I had a conversation with him. You know, we were watching a movie one time and he said, you know, there was a person exactly in the same position he’s in now. And he said, if I’m ever like that, pull the plug or don’t ever let me live like that.” So you can use those statements as a guide to say, “okay, well, we’ve followed his POLST form. We’ve done everything we could to get him back. But now he’s in a situation that you’re telling me he wouldn’t want to stay in. That’s not identified on the POLST form that might be identified in the guidance directive, but now he’s in a position doesn’t want to stay in. And so, as a family, we’re going to make a decision to let him go, and that’s totally appropriate.

Other people that say, we’re going to follow this to the letter, and we’re just going to keep this person alive. If that’s what that person really wanted, then that also may be appropriate.

Kevin: Does it become a legal issue where the family has a different opinion about what that person wants versus the documentation they filled out, being specific about what they thought they wanted?

Jeff Stoneberg: It can be. Typically, it doesn’t. Legal issues that we run into a lot of times are a sibling contesting that their brother shouldn’t be the durable power of attorney, despite it being on the being having his name and signature on there. Somebody who’s contesting the validity of an advance directive or a POLST form because they weren’t there to witness it being signed. So, you know, and I think those come from spaces of fear and stress, and anxiety about the medical situation. The family dynamics can really mess things up, to be honest with you.

You know, there’s plenty of situations in California… we call it “the daughter from New York” and New York, they call it “the daughter from California”, right? So you have a person who’s living in California who’s being cared for by their family, who’s getting sicker, maybe they have a stroke. This person who lives in New York hasn’t seen the patient in 10 years, but now flies into town and is going to save the day and families may have said, “okay, well, we’re, we’re going to go with hospice. We’re not going to put in a feeding tube” and the daughter from New York says, “no, I want a feeding tube. I’m demanding it,” and she raises holy hell about it.

And that creates a really messy situation but if there’s an advance directive, I’m going to follow it, and I don’t know of a court case where somebody’s been found liable for not following, or you could be in trouble for not following the advance directive. I don’t think I’d ever be in trouble for following it.

…Kevin, my, my air pods are going to die here in a minute.

Kevin: Oh, okay. It’s fine! I actually was just going to ask whether there were any last things that you felt like we ought to cover and, and didn’t for this kind of initial discussion.

Jeff Stoneberg: There’s so many different facets to sort of what we do in palliative care. You can’t touch on them [all]. There’s so many different stories and circumstances and experiences that I’ve seen. What I think is important to recognize is, you know, there’s, there’s the mortality rate for being a human being is still 100%, right? “Nobody’s getting out of here alive.” And I think if we recognize that. and we recognize that end of life can be something really beautiful. It can be something that can be healing. It doesn’t have to be a terrible thing. As people become sicker, it’s very frightening. It’s anxiety provoking and it’s scary.

Your palliative care team is really there to help shepherd you through that and to make sure that you’re getting the support you need to make sure that your family’s being supported, that you’re comfortable and you’re living your best life. That’s what we try to do.