Episode 025: Navigating Care to Comfort

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Brian: Hello, and welcome to today's podcast. My name is Brian Fortenberry, and today we're going to be talking about advanced care plans, and palliative care, and hospice, and getting more information on that, and joining us is someone who's going to really help us navigate all of this difficult terrain at times. It's Dr. Dan Ely. Dr. Ely, welcome.

Dr. Ely: Thanks Brian, very glad to be here.

Brian: Before we start talking about all of this very necessary and oftentimes confusing stuff, tell us a little bit about yourself and your background.

Dr. Ely: I am in internal medicine, just general care for adults. I'm a general internist. I'm here at the University of Tennessee Medical Center, where I've been practicing and teaching for a number of years, about 30 or more. Part of what I have done, besides teaching in the hospital and practicing in my office, is I've been a Hospice Medical Director for a good deal of time. I'm not currently, from time constraint standpoint, but I was a Hospice Medical Director for 25 plus years, and so a lot of background in the issues that are involved in advanced care planning,

Brian: So, and having that clinical, of being there with the patients, and then getting involved in hospice, what really drew you to the hospice and that type of direction?

Dr. Ely: First, I'll tell you that when we started our hospice here at UT in Knoxville, it was out of a need, and at a time when hospice was just in its infancy in the United States, and certainly in this region. So it was a new endeavor, and one that we kind of grew and found our way along over a period of time. And I found I was interested in it primarily because I thought we did, at times, a pretty poor job of helping people at the end of their life, helping people live as well as they could at the end of their life.

Brian: That's so important, that I think sometimes it goes unrecognized, the importance of ending life like that. I had this conversation with other people before of defining what success is in medicine, and just because they're breathing, or just because they're able to sit in a bed or whatnot, that doesn't necessarily mean success to that particular person. And these are very important issues and often confusing, because I know you hear about advanced care plans, palliative care, hospice, and they're all very different, right?

Dr. Ely: They are. Going back to what you were saying about the confusing parts and the aspect of our healthcare system, our healthcare system is wonderful in certain ways. We've got tremendous technology and we've got wonderful specialty care, both medical and surgical and otherwise, that can be absolutely amazing in how we help people survive and live their lives. But there's an old adage, to cure when possible, to heal sometimes, but to comfort always. And we sometimes forget that comfort part, because we're so focused on the curing part, and all the technological advances that we can bring to bear in a person's care, and we forget the comfort part sometimes.

Brian: That's a huge part, especially if you're the patient, that is a big part of it.

Dr. Ely: Absolutely.

Brian: Advanced care plans, tell us a little bit more about that. Kind of give us some definition around that.

Dr. Ely: Okay.

Brian: And what that looks like, and what it is?

Dr. Ely: Sure. Advanced Care Planning, I think just generally means thinking about how a person's life should look basically, and their treatments should look, based on their illness/illnesses, and what we might expect to happen in the future. If you've got an illness that might be life-defining, might bring your life to a close sooner than we would otherwise hope, and might have a lot of symptomatology associated with it, that's an illness that for which advanced planning is appropriate, because we want to think about, how do you want that life to be? How aggressive are we going to be? Are we going to talk about hospitalization? Are we going to talk about home care, and what medicines are we going to use? What side effects are you willing to put up with? When is surgery appropriate, when is it not?

Brian: I got ya. So it does really focus on the comfort part too then, does it not?

Dr. Ely: Absolutely.

Brian: So you often hear people talk about palliative care and hospice, and unfortunately those are kind of used interchangeably, sometimes amongst not only people not involved in healthcare, but I think probably some people involved in healthcare kind of use those two terms interchangeably. My understanding is they're really not, correct?

Dr. Ely: I think you're absolutely correct about that. Palliative care and hospice are related, and at times they go hand-in-hand, but they are not the same thing. And the way I would look at it, palliative care is comfort-based, symptom-based care that is appropriate for anyone with a, what I would term, life limiting illness. If you've got a chronic disease, which is not by itself going to improve but you can live with for an undetermined period of time, good, we want to help you live as well as we can during that period of time, and that's where palliative care can be very helpful. To help me as a primary care physician, for example, not overlook ways that I can help you to live better during that period of time.

Brian: Hospice, on the other hand, that is more the end of life care, is that correct?

Dr. Ely: Yes. Now, we have oftentimes a concept that hospice means the last six months of life.

Brian: Right.

Dr. Ely: Well, that's an artificial constraint. That's really a Medicare guideline.

Brian: Okay.

Dr. Ely:  But hospice is appropriate when you've got terminal illness, where curative care is not going to be the goal. In a sense, it's when an individual's goals of care are directed at quality of life, symptom control, and perhaps staying out of the hospital.

Brian: I know someone, as a matter of fact, that their loved one got involved in hospice, and they ended up being in hospice only for a couple of days really, and I've known some just for a couple of weeks. And then I hear on the back end, people going, "Were they involved in palliative care? Had they been involved in this for a longer period of time?" And the more you talk to people, you hear people say, "Well, my loved one was only in hospice care for these few days, or whatnot." And people that are in the know, say you can be involved, like you said, a lot longer than just the last few days or weeks.

Dr. Ely: Absolutely. In fact, an unfortunately high percentage of hospice referrals occur in the last week of life. And hospice in that setting is appropriate, but it's a missed opportunity, you might say. Because hospice brings so much to bear that is helpful and supportive for caregivers, family, extended family, not just a patient, not just an individual. And that can best be realized when there's adequate period of time to develop relationships for the hospice team, to know individuals and understand exactly what they want, rather than coming in at the end with pain as our main goal, for example, and symptom control. So yes, one of the things we really need to do better about, is timely referral to hospice.

Brian: Hospice and even palliative care, but certainly hospice, how much is focused not only on the patient, but the family of the patient involved?

Dr. Ely: A great deal, yes. And that's mostly with hospice, but it's true with palliative care for sure, because almost never do you have an individual without an extended group of caregivers and folks of interest, and those people are all greatly affected by what's happening with this individual.

Brian: Do you find a lot of people hesitant, or at least concerned about whenever a physician brings up the possibility of entering into palliative care? That families go, "Wait, I'm not ready to give up," and they automatically go there, and then there is some consternation on the part of the family members, and it really makes your job more difficult, because they don't understand the meaning?

Dr. Ely: Yes, that's very common. And I'll tell you, there are some obstacles to having the discussion. Some of those obstacles are on the part of the provider. Doctors, for example, we're never sure when someone will die.

Brian: Sure.

Dr. Ely: We just know that they have a life limiting terminal illness. There's this old story that you'll hear somebody say, "Well, they gave my Uncle Bill two weeks to live. Well, that was two years ago, and he just got back from Gatlinburg." Well, you don't want to be the doctor that they're referring to, that gave him two weeks to live, so doctors are never short. We're just not. We're not God, we just have our sense. But that's one of the reasons that doctors don't make the effort early, and then doctors are always concerned that families will perceive this, as we're giving up. This means that we have no other options, and they're not sure how it will be received by either an individual or their caregivers, just like you said.

Brian: What kind of advice would you give physicians that are practicing, to help maybe ease that transition? What kind of subjects should they breach with their patients and the patient's family, to help them understand better that this is where they need to go next and it's not giving up?

Dr. Ely: Right. I think it starts with doctors have to develop a comfort level with having what can be a difficult conversation, and since we don't do it regularly, readily, it remains a difficult conversation. What you need to do is, kind of fine tune it, you might say. To me, there's a few important parts of it, and this would be true whether you're talking in the office, in the situation of advanced care planning for someone who has a life limiting but not necessarily terminal illness, and it's very appropriate for somebody in the hospital with a terminal illness, where we've got some real decisions we have to make right now. And, to me, the issues start with talking with an individual and asking, what is your understanding of your health? What is your understanding of the process here, and further, what would you like to see have happen? In other words, what are your goals of care? And then parlaying that with, here's my perception of what we see right now, and here... and this is the important part that we don't often do is, here's what I really expect to have happen in the future.

Brian: Gotcha.

Dr. Ely: I've heard you say, this is what you'd like to have happen, but in truth I don't see that as being realistic, and here's what I see as being realistic. Now, let's talk about that and see if we can come up with what seems like a sensible plan for you.

Brian: And like many things, I guess it just comes down to communication.

Dr. Ely: It does, and it's time consuming. And this is another, of course, key. Doctors see this as something that they don't always have time for, because you can't do it quickly. You've got to sit down, and you've got to make yourself available, and you've got to hear out the various issues and concerns, and the real questions that patients and their families have.

Brian: You're right. If you try to breach something like this quickly, it's really going to come across as negative. Because if they feel like you're just, "Here, this is it, you got to go," then they're really feeling like it's that last ditch effort. I think hopefully things like today, this podcast, and other things of educating physicians about the ability to have these palliative care opportunities, and these advanced care plan opportunities, they're not having to go straight to hospice. Hopefully that will help them have a better understanding of the offerings to offer their patients.

Dr. Ely: Oh, I very much agree. And I think physicians need to make themselves, help themselves, become comfortable with having that discussion, and starting it early. Whether it's advanced care planning, whether it's palliative care options, or whether it's really ... it's time for hospice.

Brian: What is, and I'm asking this out of total ignorance, advanced care plans versus palliative care? What's the real difference there? Because I kind of feel like I know the difference in palliative care and hospice, how about the other two?

Dr. Ely: As far as palliative care, physicians tend to confuse palliative care and hospice, and they're not the same thing. Palliative care is really appropriate for someone with life limiting illness, where comfort and symptom control is a priority. And from that standpoint, it can be in the hospital, we have a palliative care team as many hospitals do. But many physicians don't know that palliative care can be provided in the outpatient setting as well, to help along with a home healthcare team, to make sure we're not overlooking opportunities to provide comfort. Advanced care planning, I think, is more of an umbrella term, at least in my mind, for saying, "Hey, we're thinking about what we want to have happen down the road."

Brian: Okay.

Dr. Ely: Or, "Let's start that dialogue now." Alright, this is advanced care planning. Rather than, "Here's the next chemotherapy option, after you've failed the first one, here's the next one." Well, there's a parallel track to be thinking about, how do you want your life to play out, and what are your goals of care?

Brian: Okay.

Dr. Ely: You can literally start that anytime in someone's life, and frankly I think we should be doing it institutionally much sooner than we do now. We're talking about the treatments, we're talking about the newest techniques, we're not talking about the, "Hey, yes, but what about your quality of life and what about your goals?" I think advanced care planning in a sense, in a simplified sense, just begins the discussion that's appropriate for every person.

Brian: You're right. I mean, that could happen with someone middle aged, that has no issues at that point really, just to have an idea of what your expectation is as you get older in life. And I think you're right, I think that is something that when you're 30 and bulletproof, you don't think about that.

Dr. Ely: Exactly.

Brian: But I can speak from experience, when you start having loved ones that get older, and you start experiencing some of those debilitating diseases, whether it be dementia, whether it be cancer, whether it be some of those things, you're faced with some pretty difficult decisions. And not only that, you're trying to think, what would they want?

Dr. Ely: Mm-hmm.

Brian: And if they haven't already had those conversations and voiced that, you're guessing. So really, it's almost a gift to your loved ones for them to kind of know what your plans were, right?

Dr. Ely: Oh, absolutely. In fact, that's an interesting segue, because one of the things that I find myself interestingly being a fan of is a Medicare perspective. Medicare allows what's called an annual wellness visit, and it's really kind of a checklist of priorities and things that we're trying to do to help people understand their risks. It's not a physical exam, it is simply a way of thinking about your current life. Well, one of the things they talk about in that wellness is, you need to have some advanced directive discussion. And I utilize that as a way to help people understand how having an advanced directive in place, a written list of goals and how I would want in this situation, for example, do you want to be on a ventilator if you can't breathe for yourself? Would you want a feeding tube if you can't eat safely? If that's written down, that helps your family, because they don't have to make those tough decisions at a time when it's always stressful.

Brian: I tell ya, I really appreciate you coming in and even more than that, I appreciate your willingness to be a physician, to be there to help and appreciate that end of life, or that someone with a terminal illness, or with a debilitating illness, as you said. Because people think of physicians, as you said earlier, you just fix it. And some things just can't be fixed, but that doesn't mean that there's not something that is there for the comfort, as you said. So I greatly appreciate your willingness to do that.

Dr. Ely: Right. That is one of the key messages, is there's always care to provide, whether it's curative or not.

Brian: Dr. Ely, I really appreciate you taking the time. Thanks for being here today.

Dr. Ely: Thank you, Brian.

Speaker 1: Thank you for listening to this episode of Your Practice Made Perfect, with your host, Bryan Fortenberry. Listen to more episodes, subscribe to the podcast, and find show notes at SVMIC.com/podcast.The contents of this podcast are intended for informational purposes only and do not constitute legal advice. Policyholders or urged to consult with their personal attorney for legal advice, as specific legal requirements may vary from state to state and change over time.