When Children Need Palliative Care with Kelly Michelson, MD, MPH

Erin Spain: Welcome to Breakthroughs, a podcast from Northwestern University Feinberg School of Medicine. I'm Erin Spain, executive editor of the Breakthroughs newsletter. When families have critically ill children at the Ann and Robert H. Lurie Children's Hospital of Chicago and need to make extremely difficult decisions, and the end of life is near, today's guest is often called to the bedside to guide families through their options. Dr. Kelly Michelson is an intensive care physician at Lurie Children's, a professor and scientist here at Feinberg, as well as a bioethicist and director of Northwestern's Center for Bioethics and Medical Humanities. Thanks for joining me today.

Kelly Michelson: Thank you so much for having me.

Erin Spain: You've said that palliative care is really about making the most of life. What does that mean when a patient, a child is dying?

Kelly Michelson: To understand palliative care. We have to remember first that the focus is not really about dying, so let me. Let me step back a little bit and think about what do we mean when we talk about palliative care? If you look at the history, palliative care's not been around for that long. It really grew up in the 1960 in England. The founder of Palliative care is thought to be a woman named Cicely Saunders who was originally a social worker and became a doctor largely because she was worried and frustrated by how dying patients were cared for at the end of their life and it wasn't until the 1970s when the United States saw first hospice organization. So this is a really, this is a new specialty. In fact, it was about 10 years ago that board certification in palliative care developed. So it's very new and I'm going to pull from a definition that I really appreciate. I think others, um, advocate in terms of describing palliative care and it goes like this. Palliative care is an interdisciplinary approach to patient and family centered care that optimizes quality of life by anticipating, preventing and treating suffering. Nowhere in that definition do I or do people who agree with that approach talk about dying or death or even end of life. The real focus is on minimizing suffering. And not just suffering for the patient, but for the whole family. What might that look like for a child is really going to be very different for every family. I think that's one of the challenges and the opportunities for palliative care and for people who work in this area to find the place that the family needs to adapt whatever is going on in their world to their needs and their interests, so that dying for one child and one family may look very different than for another family.

Erin Spain: Well planning and talking in the communication is so important. Can you walk me through what a typical sort of planning session looks like when you're with the parents or the caregivers and your and perhaps the patient as well? Depending on their age.

Kelly Michelson: A lot of the things that I think go into typical conversations are around relationship building and trust building and understanding, so things like having open and honest, but sensitive conversations about key information that people need to know. I think practitioners often worry that we're not giving families the whole picture or maybe families are feeling like they want to know more information or maybe they don't want to know more information, but the exchange of information is, is really key and needs to be done in an open and sensitive way.

Erin Spain: You said trust, too, is really important, building that trust between you as the doctor and the family. How do you do that? What are some of the ways that you can really feel like having them feel that you're being transparent with them and giving them all the information?

Kelly Michelson: Yeah, so some of the other things that I go into that go into all of these discussions I think fit in that category. Um, one thing is curiosity. I think people are more likely to trust another person if they see a genuine interest being displayed. If I ask you questions about you, you're a lot more likely to trust me and we're a lot more able to, we're able to have a much more open conversation if it comes from a place of curiosity. Another thing that I think engenders trust, and that's really important in these conversations is listening. There's been countless studies about and they all say the same thing, which is that doctors talk a lot and they don't listen to as much as they as they could. And you know, I think there's a place for talking and a place for listening and I think there are some discussions where it makes sense for the doctor to talk a lot, but it's amazing what comes out when we stop and listen. And I think that's really important. I'm really engenders trust. And then the other thing is to acknowledge and really try to understand and be supportive of different approaches. Every family is going to come at the same problem in a different way. Every, every patient is going to come at the same problem in a different way. And as doctors, as people in healthcare, we need to understand what that way is for the any particular situation and uh, and be supportive when we can.

Erin Spain: And you do that. I mean, you're dealing with so many different types of families from different backgrounds and religions in a city like Chicago, we have all people will come from all different backgrounds and belief systems. How do you jump into that conversation and start to sort of peel away, okay, where, where are these folks coming from? Even what their health literacy might be a low, they might not be understanding some of the terms you're using. A how difficult is that to kind of jump right in and figure out, um, you know, sort of who you're dealing with and how they're responding to the situation.

Kelly Michelson: We have to really think about what assumptions we come into that conversation with and be careful not to let those, not to lead with those assumptions. And one way to do that is to ask questions, open ended questions, and then again, listen, what are the answers to those questions? Where is the focus? Sometimes we're really interested in talking about one thing and the family is totally on a different page and maybe both things need to get addressed, but until we ask a question and listen to what people are thinking about, we won't know I. There's no way. I don't think for everyone to know all the details and nuances of a particular culture of a particular religion and in this world that we live in, which is beautifully decorated by a Menagerie of cultures that intertwine. Even if you think you know, you can never know. So really asking questions and being a good listener is the way to start those conversations and the to handles some of the challenges with people coming from different ideas and places.

Erin Spain: And I'm curious how often you involve the patient, the child themselves in these discussions. That must be hard depending on their age. I mean they're. If they're a preteen or teenager, they might have some big opinions about what they want to happen with their care and their end of life care.

Kelly Michelson: In general, the literature is very supportive of being open to kids of all ages, at a developmentally appropriate level, about their being sick, whatever that means. Of course, the American Academy of Pediatrics advocates involving children in a developmentally appropriate way in their medical care, even in decisions that may impact end of life or, or not. Um, but in reality, it really depends on how the family sees all of that and people view it very differently. I'm certainly an advocate of being as open as possible, again, being thoughtful to the developmental level of the child. Um, but I think that even kids who are just learning to talk and interact, they have an awareness that we don't always appreciate about what's going on. They have a sense, they know that something's wrong and they may not know what it is. In most circumstances, I think it's helpful to at least give them a space to talk about it. What are some of the elements of an excellent pediatric palliative care program are really good. Palliative care program is not one person or one doctor, but it includes doctors and nurses and social workers and case managers and chaplains and child life therapist and musical therapist and maybe integrative medicine specialists. And the idea is really that thinking about the quality of a person's life is all encompassing and broad sweeping across different components and to really maximize that we need input from different groups. So I'm a multidisciplinary group is one of the hallmarks. Um, the other thing that I think is really important is developing an environment where the palliative care program is able to integrate with other specialties and other medical care teams in the hospital. It's sort of not helpful if no one consults the palliative care team or if nobody thinks that it's a good idea to include this particular group. And I think the way to achieve that is to have a good relationship with the other areas in the hospital. And then I think the other thing is to find ways for the program to influence educate, impact primary specialties like primary pediatrics or even other specialties. Ultimately, in some ways everybody needs a palliative care doctor, right? We're all dying and we all have suffering and so, but there's clearly no, not enough people to for everyone to have their own personal palliative care team, so, but some of these concepts are universal and I think that's. We see that in other disciplines in medicine, right? A general pediatrician takes care of asthmatic patients in addition to a pulmonologist or an allergist who specialize more in that area, but they do that because they have some general knowledge and because they know they can always use these other teams as resources. I think that a really good palliative care program mirrors that kind of a model where there are going to be things that a general pediatrician or an oncologist or a liver transplant team focuses on that overlap with areas that palliative care may have specialties in, but that the team ultimately need to work together at some point too.

Erin Spain: How important is philanthropy to these sort of programs?

Kelly Michelson: It's paramount. I mean, most of these programs really would not exist if it weren't for philanthropy, and the reason for that is that there's enormous challenges in getting money to these kinds of programs. First of all, many insurance companies don't reimburse for palliative care, some reimburse for what we call hospice care. So now you may be like, well, Kelly, what is hospice friends? Right? Right. So hospice is really an insurance driven term that refers to anyone with an expected mortality of six months. That means anyone who's likely to die within the next six months. And if you meet that distinction and a physician acknowledges that, then you're eligible for hospice. And there are some insurance companies that pay for hospice care. Um, but that's problematic for a number of reasons. The first of which is that we oftentimes cannot predict when a person is going to die in the adult world. It's hard. In the pediatric world, it's often a 10 times harder because kids are resilient in ways that we can never predict. The other reason that it's problematic is that a lot of insurance companies will pay for hospice, but not if you're getting therapies that would be considered curative, so let's say you're a cancer patient who is likely to die in six months, but there's a drug that you want to try there are companies that won't pay for hospice if you're still getting some of these curative therapy, so that's. That's a real problem. So they've developed and a lot of areas, insurance companies and a lot of areas, something called concurrent care. This is something that we have in pediatrics. It's really important and the idea is that you can get palliative care at the same time that you get therapies that are potentially life saving or curative or aimed at a cure and that's one way to sort of deal with that problem. But even here in Illinois, concurrent care is only available if you are eligible for hospice. In other words, if you have someone who can tell that you're going to die, die in the next six months. So it's really problematic and getting funding for palliative care has been enormously difficult. Difficult. I'm in Illinois, a few years ago we passed the Illinois Pediatric Palliative Care Act, which was, which was developed specifically to support palliative care services for children and it exists, but it's not funded. So it's a law that is not very helpful in terms of financially supporting these patients. Um, and the other challenges are that as I mentioned, palliative care's very multidisciplinary. It's hard to code for these things. There's very few procedures, so a lot of programs are supported largely through philanthropic dollars. You mentioned before there could be, um, art therapy and music therapy and those types of things.

Erin Spain:Talk a little bit about what those services look like in palliative care.

Kelly Michelson: They look very different for each patient, but you know, art therapy can be an extraordinary way of opening up a conversation with a patient about their understanding of their illness and the consequences. It can help us to see what they're seeing. So we may see a picture and we may give a child an opportunity to draw and they start drawing a picture of a butterfly flying out into the sky. And if you ask them details about that and why they did that, maybe they see themselves as the butterfly flying out into the sky and, you know, I'm not an art therapist, so I'm just sharing with you some of the things that I've seen or um, you notice that the art that a child's drawing starts to get darker, like literally using darker colors. Maybe that's going to be a first clue that this child is really troubled about something that they haven't spoke up about. So I think art therapy and music therapy can really get at the suffering challenges and they can even be amazing music therapy in particular and amazing avenue for managing symptoms, whether it's pain or nausea or fatigue. Um, and I think an area that's really ripe for investigation is exactly how do these therapies integrate in palliative care and how effective are they and why are they effective and what parts of them can we focus on to make them even more effective.

Erin Spain: I think we're lucky at Lurie children's to have a lot of those services. Um, and there's even some research going on in that area. I know in the past that we've reported through the medical school, but, um, would you say, um, could you share some of those, those programs that you know of that are happening at Laurie?

Kelly Michelson: Yeah, most of Lurie's family services to my knowledge is supported by philanthropy, so it's huge. But you know, patients in my intensive care unit have access to a chaplain who can be there for a variety of different reasons. Sometimes religious, sometimes more spiritual social worker, a case manager, a art therapist, child life specialist, music therapist. I, I go into my patient's room who was on a breathing machine and sedated and they are someone playing guitar and singing music. And I think that the value of these kinds of engagements are potentially really important and we're lucky to have them and I think we need more work to understand exactly what impact they have.

Erin Spain:Why is it so important that people like yourself are mentoring this next generation of physicians to be better communicators? 

Kelly Michelson: The development of technology and medicine is even more reason to help physicians be better communicators. As our technology gets more complicated and more advanced, physicians spend a lot of time understanding those little nuanced, technical, scientific important things and it gets very complicated, but then what is our role become? It really becomes helping the patient understand all of that and understand where it fits in the context of their lives, and so as technology becomes more prevalent in medicine and more complicated, I really think understanding how to bridge the knowledge gap between a doctor or another health care provider and the patient is going to become more and more important.