Difficult but Beneficial Conversations about End-of-Life Care

Headshot of Elizabeth Bukowy
Elizabeth Bukowy, DO, CMD

For families and dementia care partners, palliative care can help improve the quality of life for their loved ones and themselves by addressing physical and emotional needs. However, starting conversations around end-of-life care and planning can be difficult. Dr. Elizabeth Bukowy joins the podcast to explain the difference between palliative and hospice care, share how families and care partners can start these challenging conversations, and discuss why these discussions are essential for quality of life.

Guest: Elizabeth Bukowy, DO, CMD, assistant professor, Medical College of Wisconsin Division of Geriatrics; medical director, Lutheran Home and Congregational Home

Show Notes

Learn more about the 20th Annual Update in Alzheimer’s Disease and Related Dementias on the Wisconsin Alzheimer’s Institute’s website.

Watch the full keynotes of the event on our YouTube channel. Watch the pre-conference workshop for new dementia care professionals on our YouTube channel. Dr. Bukowy’s keynote starts at 1:46:46 in the recording.

Learn more about Dr. Bukowy in her bio on Froedtert Hospital’s  website.

Learn more about palliative care from our past episode, “Palliative Care And Hospice Conversations For Dementia Patients, Families And Caregivers.”

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Find transcripts and more at our website.

Email Dementia Matters: dementiamatters@medicine.wisc.edu

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Intro: I’m Dr. Nathaniel Chin, and you’re listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Dr. Nathaniel Chin: Welcome back to Dementia Matters. Today I'm joined by another key speaker from the Wisconsin Alzheimer's Institute's (WAI) 20th Annual Update in Alzheimer's Disease and Related Dementias conference, Dr. Elizabeth Bukowy. Dr. Bukowy is an assistant professor in the geriatric and palliative medicine division at the Medical College of Wisconsin and Froedtert Hospital in Wauwatosa, Wisconsin. She's also the medical director for the Lutheran Home and Congregational Home and a practitioner at the Clement J. Zablocki VA Medical Center. Her work focuses on advanced care planning and dementia education, as well as end-of-life care, which was the topic of her WAI annual update presentation, “Difficult Conversations around Palliative Care,” this past November. Dr. Bukowy, welcome to Dementia Matters

Dr. Elizabeth Bukowy: Thanks, Dr. Chin. Happy to be here. 

Chin: You are a geriatrician and a palliative care physician. What led you to pursue training in both fields, and how do they best complement each other in the work that you're doing?

Bukowy: I have always loved older adults. I've always known that that is what I wanted to focus on. I volunteered in a memory care in high school. And then before medical school, I actually took a year off and spent time at a nursing facility doing certified nursing assistant work. Once I figured out that I could only work with the older population and that I could even further do just nursing facility care. I knew that this was really where I was going to be, and I've been sold and never looked back. The palliative care piece came just from one of those light bulb moments with a family interaction, and it was just one of those things that I knew I had to do with this additional fellowship to really ensure that the way they compliment each other is, not only can I take care of somebody's loved one who is older, but also when they come into my nursing facility, they know that I can take care of them from the moment that they enter the door throughout their entire life, no matter how long that life is. 

Chin: It's incredible that in high school, you knew not only, "Oh. I wanna be a doctor." But you knew the exact specialty and the exact setting that you were going to be working.

Bukowy: Yeah, just one of those things, I just always knew older adults is what I wanted to spend my life doing. And yep, never looked back, especially in the nursing homes. I just always knew that was my place. 

Chin: That's wonderful. And of course, we need care. We need providers like you in those nursing homes. So your talk at the WAI Annual Update was on difficult conversations around palliative care. Now, in my experience, people often have the wrong or incomplete idea of what palliative care is. So I'm hoping you can describe palliative care for us and how it differs in particular from hospice care.

Bukowy: Sure. It is kind of sometimes a nebulous term that is thrown around. I'll try to describe it in a couple of different ways and hopefully one of them sticks for the listeners. At the simplest level, palliative care has been rooted in the hospice movement. However, unlike hospice, you don't have to have a terminal or a near-death condition. You can think of it as a special service for any age and stage of somebody's illness. It can be done in addition to potential curative treatments. That's like the simplest way you could look at it. It's kind of this, a little bit of a gray zone in between curative treatments, management with a doctor and certain appointments. And you have this thing, this diagnosis, you have dementia or the beginnings of dementia. We know what's gonna get worse, we're not there yet. So how do we make that time good quality time? And that's kind of where palliative focus is. Not the, "now we're near death", "now we're talking about hospice." It's that middle range, and for different illnesses – for dementia, that palliative care range could be an involvement; could be much larger and a longer relationship with those providers. For a medical community, it's a newer specialty. We just got into our training and board certifications around 2006 and 2007, so we're in a newer specialty when you think of different heart specialists, brain specialists, things like that. It's usually a team approach. The benefit of palliative care is that there's a lot of different people that are focused on somebody's quality of life. You can have clergy members, social workers and case managers. You have a physician or an advanced care provider and psychologist. Sometimes you can have music, than entologists thanatologists or music therapy. So there's a lot of holistic, whole body support that comes with palliative care. Sometimes we get questions of, "Well, where is palliative care?" Really, palliative care should be provided in any setting because somebody's quality of life is always important no matter where they're at. Palliative care can be on the inpatient. If people are admitted to the hospital, there is usually a palliative care team. There's outpatient appointments,o you could go to a clinic. There is some home-based palliative care programs that are usually rooted in a home care agency or a hospice agency. There's some different levels, but also any provider that you have, you can ask them to talk about some of these bigger picture ideas in somebody's quality of life. If we dive into it a little bit deeper, really a palliative care provider can focus on difficult treatment symptoms due to somebody's underlying illness and engage in some of those, what we would call "difficult medical decision." In the medical community, we would use the term "goals of care." And we really just think of that with our patients and our family members as those really difficult conversations where we talk about the big picture. We really try to support patients and families and try to provide anticipatory guidance to them as their illness progresses, and also try to help with making plans for the future. 

Chin: There's so much that palliative care does. And what your answer highlights so much of what I tried to explain to my patients, which is it's not that we're giving up, it's not that we're doing less. In fact, it's the opposite. We're involving more people, more teams, thinking outside of the box in this holistic manner to treat conditions, to treat symptoms, to think about the future. And that it can be actually more intensive than what people think meant there to be person-centered, but whole person. And so I appreciate your answer. And also that it's in every context, every setting. You can be in a hospital, it can be at home. But it is for serious conditions in general. If you're a healthy individual, you wouldn't necessarily need palliative care, but it is sort of also an approach. It's an approach to how we provide care. 

Bukowy: I like to say it's a lot of the art of medicine rather than some of that science and guideline of medicine. It's really, we're not looking at really somebody's lab work and all that kind of stuff. We are talking to the person, seeing how they are able to function, seeing how they are able to think and express themselves, and trying to figure out what makes that life, quality life and trying to help people talk through: “Well, if this is what somebody's quality of life is, then these are the treatments moving forward that seem to make sense to either maintain that quality of life or try to improve it.” 

Chin: So then what does palliative care offer people living with dementia, more specifically? 

Bukowy: Because dementia can be such a long illness, in the beginning, if somebody's diagnosed with dementia, advanced care planning and these kind of discussions about quality of life and what makes their life quality and how we can maximize that quality for as long as possible. So having those discussions when our loved ones with dementia are still able to express their wishes, potentially, we're not taking away care, we might just be transitioning care. So discussions about putting potential limits to care when it doesn't seem to make sense or benefit somebody's quality of life. I always like to ensure proper paperwork is in place, so talking about a power of attorney, if anything financial needs to be done – not that us as a medical provider does that, but giving that recommendation – and having the discussion about code status, about if somebody would like to be a full code or do not resuscitate and having those discussions about what that means not only for their body, but also for their brain and chances after somebody does have a CPR event. Also talking about going to and from the hospital anymore. And maybe somebody when you're talking to them in the beginning still has benefit of going to the hospital. At some point they may say, “if I get to this point,” whatever that point is for them, “I no longer want to go back and forth to the hospital.” Some of those big pictures are helpful to kind of address when our loved ones with dementia can actually express those wishes. 

Chin: And so on this podcast, we talk a lot about those clinical syndromes of dementia, mild cognitive impairment. So I want to know what you think about palliative care, perhaps even earlier than dementia in this whole spectrum of cognitive change. Is there a place for it with someone who has mild cognitive impairment (MCI), but it's due to a progressive condition like Alzheimer's or Parkinson's disease or Lewy body disease. 

Bukowy: I think there is. For some of the same reasons that I just touched on about making sure the proper paperwork is in line. The other thing is that it's such a big responsibility and a job to be somebody's power of attorney. I've been asked by family members, and I say, “I will do this for you, but we're going to sit down and have a conversation about what you want done in certain big picture situations.” When somebody has mild cognitive impairment, it's that perfect time of getting that information in line, getting it to all your medical professionals, but also you as a power of attorney or a caregiver, knowing not just that that paperwork is there but what that paperwork means and how you can best advocate for your loved one as their dementia progresses. So I think for MCI, that's really a big piece of it. For somebody that has, well, really anything, Alzheimer's, dementia, Parkinson's, or Lewy body – specifically with Parkinson's disease that progresses to dementia too – is that there's gonna be a swallow aspect of it. We all see our loved ones with Parkinson's disease develop a wet voice, issues with swallowing, and risk of having lung infections or pneumonias. Somebody that has Alzheimer's disease, they may forget how to eat appropriately and not be able to swallow appropriately. In the beginning, doing discussions about “would you want a certain modified diet,” because for some people, food is quality of life. So asking if that is something that they would ever accept. And then talking about if you get repeat pneumonias because you can't swallow and unfortunately, it's because of your brain you can't swallow. Is there a point when we wouldn't want – when you wouldn't want to go back and forth to the hospital? So I think you have to add in that specific swallow piece really with all dementias, because we know that it's likely gonna happen to everyone at some point. So that's an important piece to put in there as well.

Chin: Many people with serious medical conditions will ask their provider, “how long do they have left to live?” This question becomes even more prominent when they have a condition like dementia. So how do these conversations go with you, and how accurate do you think providers are in giving estimates? 

Bukowy: I'll start with that last bit of the question, and we are not accurate. I think we all want to be, and we all wish that there is some science of medicine. We wish there was some really good guideline that we can check some boxes and figure out, “this is when our loved one is expected to die from their illness.” We really don't have those. This is that art of medicine, again, where we look at somebody and we say, “well, because our loved one isn't getting up, they're not eating, they're not as alert,” things like that. All those little things are meaning that we may be nearing our dying time. However, we're just not very good at saying what that time looks like. I find that we get much better when time is closer. When somebody is very near their dying time, something like hours to days, providers are very good at saying that. However, beyond that, sometimes there's a gray period where we as providers have a hard time saying your loved one is somewhere in weeks or months or maybe even many months to years. We're not good at kind of breaking that part down. When I'm talking about this conversation with patients, I always tell them that I'm gonna be honest with them. And I try to, what I would call, give them a warning shot, and really just say that to my patients and their family members, that we're gonna talk about some hard things. Is that okay with you? And by doing that, it gives them the chance to kind of mentally prepare that this is gonna be a hard conversation. And also if there are people in the room that maybe they would not want there, sometimes there's grandchildren or neighbors or people that aren't really involved in the medical care, it gives them a time to kind of look around the room and say, I'd like this person to leave, or I'll ask, “is it okay with these people in the room?” It gives them that opportunity to prepare and also make sure the people they want in the room are there. I would say that for the most part, everybody says yes, that they are ready and that they want to know their own prognosis. Really when I'm talking about it, I try to start by asking how much they have heard about their medical illness and how are they feeling about it. That kind of gives me good grounds for figuring out where we're at. So if I'm talking with a loved one who says, “Mom does not have a quality of life anymore. She's no longer able to respond with her environment around her. She's barely able to eat what she loved.” That's a much different conversation about prognosis because then we can really get right into where we're at as far as time, versus if somebody does not seem to have a good knowledge of where their loved ones is at, then sometimes we have to do a little bit of catch up with giving some information. When I'm giving somebody prognosis, I always do a range. Again, I'll ask like, “has anybody ever talked to you about prognosis?” Most people say, “No.” And when I ask if they would like to know prognosis, most people say, “Yes.” I think there's only been two times where somebody's ever said, “No, I don't want to know what my time is.” Or depending on somebody's ethnic background, they may say, “Please tell a different family member, I don't actually want to know.” Then we go into what the range of time is. I always do a range because you're always going to have that person who wants to put it in a calendar and mark the day that you have given. So I always do a range. I talk about hours to days or long days to short weeks. I'll talk about long weeks to months or maybe several months. I'll always say too that I don't have a crystal ball and that people surprise me either way. Sometimes they die sooner or sometimes they die after the the estimated time that I give. I also try during this time to add some anticipatory guidance for what families can expect, because you could give this range but if they don't know what they're looking for with their loved one then it's not as helpful. So I do try to give families some anticipatory guidance about what dying time looks like and how we know that dying time is getting closer. I'll talk with them about breathing changes or skin changes, changes in their cognition and their function. We'll also talk about what that means as far as somebody's eating and drinking and then I'll usually take it a step further and say how we use medications for comfort to ensure that that dying time or that near dying time is as comfortable as possible for their loved one.

Chin: That is a very comprehensive and intense discussion. I'm glad you shared all the details because these are things that I'm not aware of and I've been having these conversations or similar conversations for years. I am surprised that people don't want to know – or there are very few people who don't want to know that most people do want to know what their prognosis is. And I think as a clinician, that's important to hear because that's probably something we're not really sharing because of our own discomfort in being able to give that information. So having a layout like you've done is very helpful. I think for our clinicians that are listening, that's a very helpful way of presenting it. It leads into my next question, which is another difficult part of the conversation. Because an important component when talking about future care planning is to talk about code status, and you alluded to this earlier. That's a medical term. It can be technical, but it's also really important to the person and the families and certainly to the healthcare system, particularly inpatient if you're in a hospital. How do you approach the conversation of code status? What do you think are important things for people to know about code status before talking to their provider?

Bukowy: I try to make it a conversation. I really try to paint a picture for families so that they know that we can do a lot of things up until somebody's heart and lungs stop and they are considered to have died and then also talk about, if they choose to have a full code status, what that means for potential success rates and what recovery afterwards could look like for their loved one. I always want to make sure that at what is included with a do not resuscitate and a full code.I will always say that we try to prevent someone's heart and lungs from stopping, you know, our goal as medical providers, and that we can treat infections with antibiotics, we can provide fluids. We can give oxygen, medications, and try to treat heart attacks and strokes. So all of those things are usual medical care as long as that aligns with somebody's wishes.I always say that it includes going back and forth to the hospital. Just because somebody is a do not resuscitate doesn't mean that it's no treatment or no hospitalizations.I'll say that despite these interventions, if somebody's heart and lungs stop and they are considered to have died at that point, what would you or your loved one want done at that point? We'll talk about if you want CPR or chest compressions, if you want shocking and to be placed on life support with a breathing machine in your lungs – that's called “Full Code.” If at the point that you are considered to have died and your heart and lungs no longer are working, and if you say, "I would like a natural death at that point," and not to do those things, that is what's called a “Do-Not-Resuscitate”, “Do-Not-Intubate.” I think sharing with patients and family members that there is a range of treatment options before somebody's heart and lungs stop is very important because people get scared that if they choose a do-not-resuscitate that that means that anything that happens to them from now o, we're not gonna manage or we're not gonna treat. That's absolutely not the case. We treat plenty of things for people that are do-not-resuscitate, and also that they know that they do have the option to go back and forth to the hospital. People can be uncomfortable with the conversation. However, they really need to weigh the risk and benefits of any intervention that happens to them. A heart doctor or a cardiologist would talk to you about the benefits of certain cardiac or heart medications but that seems a lot less scary, whereas when we're talking about someone's heart and lung stopping. I mean, this is one of the most invasive procedures we're ever gonna have done to our body or our loved one's body. It feels weird because we're almost asking for consent or approval before we even know when this event is gonna happen. However, it is one of the most important consent processes that we all have to think about and really weigh what makes sense for us and our bodies or our loved ones' bodies. People need to know that doing full code interventions does not treat somebody's underlying medical illnesses, that if they've had heart, lung, kidney, any other multitude of issues, dementia, it is not going to cure those events. In fact, somebody is gonna come out of a successful code event in worse shape, both functionally and thinking and cognitively wise, especially in our older adult populations. Being a full code doesn't give us a new heart and lungs. It just makes the current heart and lungs that we have sicker and potentially more damaged, and now our brain is even more damaged because of the whole event. So that's just really important for people to know. Sometimes they don't think of the fact that it's not what we see on TV and that it's a really invasive process and that unfortunately the success rate for an older adult – and you add older adult with dementia or other health illnesses – the success rate is incredibly low, and those that do survive, they have a multitude of cognitive and functional limitations that usually leads to them needing more and more and more support. 

Chin: So to end, we have a lot of listeners that are family members of people living with dementia or cognitive change. What conversation should or could they start having with their loved ones? And how do they initiate those conversations?

Bukowy: It's a very hard conversation to have. Depending on your relationship with your loved one, it can make it even a more tenuous conversation. I recommend just talking with your loved one and saying, “This is gonna be a hard conversation. I know neither of us wanna have it. However, this is going to happen to everyone at some point. And to be your best advocate, as our mentation continues to decline, as our dementia progresses, I need to talk to you about this.” That's my personal way about it. You just ask and say, “This is hard. I need to be your advocate. We need to have this conversation.” By having the conversations early on, you don't need to do the entire thing. You can start it. You can give that warning shot of, “Hey, mom, dad, aunt, uncle, we need to have this conversation. Why don't we pick a time, 15-minutes down the line, and we're gonna do part of the conversation.” So you can kind of break it up into chunks if you start early enough. And again, like I said earlier that, I wanna make sure that any power of attorney documentation is done, that this is a great time when our loved ones are able to tell us what's important to us so we can be their biggest advocate as their dementia progresses. Getting any other trust, living will, any other legal documents or paperwork, all of those things taken care of is really important to try to have while our loved ones can tell us those things. You can also use home safety depending on where our loved ones are living. That can be a very touchy conversation too because so many of our family members and loved ones are very fiercely independent and want to remain that way as long as possible. But this can be a time where you can say, "Hey, we're not there yet. However, we do need to talk about your driving in the future or your cooking safety or our drug safety or – depending on where you live and what you're interested in – gun safety.” All of those things are wonderful to have conversations about early on and make a plan. And they're hard conversations, but they need to be done, and the biggest thing is going to be asking what makes their life quality life and that, if and when that quality of life isn't able to be achieved or reached, what they would want done or not done to them at that point. Honestly, as a family member, you don't need to go through every scenario. You don't need to say if this, then this, if this infection, then this treatment. If you know your loved ones quality of life wishes and what that big picture is, and you tell the medical providers, we're able to then give you recommendations on what treatments make the most sense to either get or maintain that quality of life for your loved one. So talking about tube feeding or dialysis for somebody's kidneys or prolonged life support, all of those things are great. If you're able to do that, wonderful. But if you're not, and you're just able to say, “My loved one would never want to get to a point where they couldn't interact with their surroundings,” or, “My loved one loved eating. And if they can't eat, they would not want to always be on a tube,” or something like that. If you just know that big picture quality of life and share that with us as the medical professionals, we can help kind of navigate what that means as far as medical treatments in the future. That's really what it all comes down to is just making sure that somebody's quality of life is maintained for as long as possible. 

Chin: With that, I'd like to thank you, Dr. Bukowy, for your excellent presentation at WAI and the care that you're providing the community.

Bukowy: Thanks for having me.

Outro: Thank you for listening to Dementia Matters. Follow us on Apple Podcasts, Spotify, Google Podcasts, or wherever you listen or tell your smart speaker to play the Dementia Matters podcast. Please rate us on your favorite podcast app -- it helps other people find our show and lets us know how we are doing. Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center at the University of Wisconsin--Madison. It receives funding from private, university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers. This episode of Dementia Matters was produced by Amy Lambright Murphy and Caoilfhinn Rauwerdink and edited by Haoming Meng. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. To learn more about the Wisconsin Alzheimer's Disease Research Center and Dementia Matters, check out our website at adrc.wisc.edu, and follow us on Facebook and Twitter. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.