I haven’t worked with many adolescents and young adults (AYA, roughly teens to twenties). But when I have, I find that they’re often some of the hardest patients to care for. Why? We talk about why it’s so hard with Abby Rosenberg (chief of PC at DFCI and Boston Childrens), Nick Purol (clinical social worker at DFCI and Boston Childrens), Daniel Eison (pediatric PC doc and co-host of PediPal). We are grateful to Andrea Thach (PC doc at Sutter East Bay) for bringing this topic to our attention and for asking questions as a guest host. Here are just a few of the explanations for why it’s so hard:
- They are closer in age to some of us (younger clinicians). Countertransference hits hard.
- There’s an in-between space between adolescence and adulthood – and there’s something that we identify with in that in-between space, tugging at our heart strings
- Everyone has been a teenager. Everyone has lived through their early 20s. Every member of the interdisciplinary team. Adolescence and young adulthood is a romanticized time of life in our culture. We remember bucking the rules, figuring out who you are, hair on fire, feeling invulnerable, trying to figure out who you are – and now those adolescents are stuck in the hospital, with doctors and parents telling them what to do, having their autonomy crushed by the medical institution, realizing they’re not invulnerable.
We talk about these issues and more – what resources to leverage, how to cope as a team. We in geriatrics and adult palliative care clinicians have so much to learn from our colleagues in pediatrics – and though many of these lessons are specific to adolescents and young adults – many of the lessons are valuable for the care of patients in older life stages.
Links to resources for working with AYA, from Nick Purol):
The Courageous Parents Network has a wealth of information/resources/videos/articles on many overlapping issues and topics related to caring for children/adolescents/young adults with serious illness (from both the provider and clinician perspective): https://courageousparentsnetwork.org
Voicing My Choices is a wonderful tool for discussing goals/wishes and introducing advance directives in the context of serious illness. It’s based off 5 Wishes and validated for AYA through direct feedback from the population: https://store.fivewishes.org/ShopLocal/en/p/VC-MASTER-000/voicing-my-choices
The Oxford Textbook of Palliative Social Work has several chapters relating to working with AYA (either due to family illness or their own), with many psychosocial clinicians in our field contributing: https://www.amazon.com/Oxford-Textbook-Palliative-Social-Work/dp/0197537855
Same is true for the Interdisciplinary Pediatric Palliative Care Textbook: https://www.amazon.com/Interdisciplinary-Pediatric-Palliative-Joanne-Wolfe/dp/0190090014/ref=sr_1_1?crid=33YG2UAKDZ8DO&keywords=interdisciplinary+pediatric+palliative+care&qid=1682288312&s=books&sprefix=interdisciplinary+pediatric+palliative+car%2Cstripbooks%2C101&sr=1-1&asin=0190090014&revisionId=&format=4&depth=1
Eric: Welcome to the GeriPal Podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: Alex, for a moment, I was going to say welcome to the PediPal Podcast-
Eric: … but that is kind of our topic today, which is really interesting from a GeriPal podcast. Who do we have with us today?
Alex: We are delighted to welcome Abby Rosenberg, who’s a pediatrician and researcher and Chief of Pediatric Palliative Care at Dana-Farber Cancer Institute in Boston Children’s. Welcome to the GeriPal podcast, Abby.
Abby: Thank you. Happy to be here.
Alex: And also, from Dana-Farber, we’re welcoming Nick Purol, who is a clinical social worker at Dana-Farber Cancer Institute and Boston Children’s. Welcome, Nick.
Nick: Thank you. Awesome to be here.
Alex: And we’re welcoming Daniel Eison, who is a pediatric palliative care doc and is co-host of PediPal, a wonderful podcast our listeners should check out, and he’s co-host with Sarah Dabagh. Welcome to the GeriPal Podcast, Daniel.
Daniel: Thanks so much. Really excited for the crossover episode.
Alex: Lastly, Andrea Thach who brought this issue to us, who is a palliative care doc at Sutter in the East Bay. Welcome to GeriPal, Andrea.
Andrea: Thrilled to be here with you all.
Eric: So we’re going to be talking about palliative care for adolescents, and young adults. Why does it feel different? Does it feel different? How should we think about the care? But before we do, Abby, I think you have a song request for Alex.
Abby: I do. So I requested that Alex play for us, Let It Grow, which is from The Lorax soundtrack. At the risk of being too pediatricsy, I wanted to tell the story of why this is-
Abby: … my song of choice. So really quickly, I study resilience and as a pediatric oncologist in my early training, I was really trying to pivot and start studying psychosocial issues like resilience and palliative care specifically. At the time, it was really, really hard for me to find mentors. I just had this experience where in the space I was in, very few people believed that this was even a legit thing to study and certainly that it would make a difference for the patients we cared for. I applied for this young investigator award from ASCO, the American Society of Clinical Oncology, and you could watch all of the people around me being like, “Oh, she’s definitely not going to get that.”
One day, I was sitting in a stats class and I got an email from ASCO saying that they had given me this award, and so I stepped out of the classroom because I was so overwhelmed and I went and sat in my car and I had young kids at the time. I turned on the radio and this song called Let It Grow from The Lorax soundtrack came on. The song is all about how if you plant a seed inside the earth and nurture it and believe in the ultimate outcome, something good will come from your hard work and your faith. It just moved me in the moment. I started to cry and my whole career now, whenever that song comes on, I just take a moment to pause and feel real gratitude for somebody, at the time, ASCO believing that this was legit, and so now here we are.
Alex: That’s great, and this is such a PediPaly type of song. So here’s a little bit of it. (Singing).
Abby: Yay. Thanks Alex.
Eric: That was fantastic. Great story too, Abby. Let’s jump into the topic. Andrea. So I just want to give our listeners how this topic came up because it’s a GeriPal podcast and we have a lot of pediatric folks on. I got an email from Andrea suggesting this topic of palliative care for young adults. Andrea, why’d you email us?
Andrea: Yeah, I thought it was a huge gap in all the terrific sections of palliative care and geriatrics that you’ve done over the 10 plus years I’ve been listening to you and it was time to rectify it. Aren’t young adults so much harder than the geriatric patients we take care of? The issues seem to be so different, and the cases, the patients who stand out in my mind going way back before palliative care existed as a discipline to now have been young people, their emotional distress and their suffering seems so much higher on average than people who have lived a full life who can be more accepting of where they are, who’ve had a chance to figure out what their life will be about, and it seems to be even more so among our consultants, the people who refer to us.
Eric: Yeah. I wonder from a provider perspective, if you’re open to talking about your team. From a personal emotional perspective, what do you think makes it hard?
Andrea: I think there’s a certain degree of countertransference going on of people can’t imagine what it’s like to be a young person going through that, of feeling like younger people haven’t had the opportunity to live their lives, that they don’t have the life’s experience that gives them the same kind of coping skills and that their whole cohort are doing other things besides going to cancer treatments and going through surgery. It’s hard to talk about. It’s hard to have a normal sexual life. It’s hard to hang out with people in the way you normally… It’s all of those things that really tug at our heartstrings and it throws us off our seat of being able to just meet them where they are and knowing how to do that. It’s all of those things, right?
Abby: I think Andrea, you’re hitting on adolescence is super hard. Young adulthood is super hard. There’s all this stuff that we’re supposed to be doing at that stage of life and then you add the complexity of the serious illness. It is really difficult for the patients and the families. What I would add to what you said is it’s really hard for us too, but it hits so close to home when it is somebody closer to our age or our kids’ ages. You’re recognizing that, wow, this could happen to me, and I wonder sometimes about the challenges. When we, pediatricians, taking care of young adults is hard for us and when we talk to you, our geriatric colleagues and adult-focused colleagues, you say taking care of young adults is hard. I think it’s hard for all of us because of that developmental piece and because it always almost resonates when we’re at the bedside.
Eric: Yeah. I wonder from your perspective, Nick, because it does feel like it… That countertransference part really hits home. What are the patients that we remember? Patients that remind us of loved ones, patients that are often younger, really hard stories, complicated issues. What do you think makes it harder from a countertransference perspective?
Nick: Such a good question. I think that as everyone is already starting to allude to, I think that there’s this in between space with adolescence and young adulthood that falls between our two areas of pediatrics and adult provider work. I think it’s challenging for both sides in a lot of ways because none of us can really truly define what that period is supposed to look like. We can understand what it is from a developmental perspective and we can think about that in psychological terms and we can think about how that looks like for individual people and providers, and as Abby’s saying, thinking about it from that could be my child or that could be me depending on your age in this field, but there’s something I think we all recognize from an arrested development standpoint of somebody growing up while also dying or struggling with a serious illness and how that really just essentially pulls at the heartstrings and makes it easier to see how we could put ourselves in that position in some ways.
I think something I always think about and when we’re talking to people who are learning or other clinicians around this is this idea of at what point in your life did you decide that you were an adult who could make autonomous decisions? I think it’s just a good thing to be able to reflect on a little bit and why it alludes to how challenging this can be, because I’m not sure when that is and I’m not sure I’m done growing and I’m not sure we ever really stop and I’m not sure I could ever really do things alone, and so I think that really speaks to that and pokes at that a little bit, so to speak.
Eric: Yeah. Daniel, does that play a role as far as… I have a 14-year-old son. He’s learning to become more and more independent. He’s becoming a lot more independent. If there’s a serious illness, all of a sudden, you’re in this place where now you’re struggling between this growing independence and also then this dependence that you may have. Thoughts on that?
Daniel: Yeah, for sure. I think it can’t be overstated how much adolescence is really hard for a lot of those reasons. It sucks to be a teenager, and I think we all remember that because all of us on this podcast and everyone who practices in palliative care, we’ve all been teenagers. It is this thing that we’ve all gone through that we are then seeing someone else go through, and it’s, at the same time, this really unique form of suffering to have to go to high school and do stuff like that, and concurrently, it’s also this very romanticized time of life in our culture and in our view of things. It’s very fraught. Part of that, as you’re alluding to, Eric, is this relationship with authority and with rules and word association, teenage rebellion.
It’s all about bucking authority, throwing off the rules of your parents, pushing the envelope, trying to figure out who you are as an adult with the autonomy like Nick was talking about, and then, yeah, you’re stuck in a hospital where not only are your parents trying to tell you what to do, the doctors are trying to tell you what to do, and the whole interdisciplinary team is trying to tell you what to do, and I think about my adolescent patients who react to that really badly and they don’t all but many of them do, and it comes from this place of feeling infantilized and disempowered, which is tough for any of us to feel, but I think particularly for an adolescent where that capacity to be an autonomous adult is just starting to flourish and then to just get it completely crushed by being in the medical institution is really, really hard.
Particularly, there was a talk at the most recent annual assembly that talked about this and the transition between pediatric and adult palliative care and medicine in general. It was a fantastic talk. If you hadn’t seen it, I highly recommend it, but the mother of a girl with cystic fibrosis spoke about her daughter’s struggles in that transition and a big part of it was that… The challenge I guess of the give and take of autonomy.
Abby: I think one of the things that’s so interesting about it is we see some young people really… Eric, you use your example of your independent son. They do choose to rely more on their family and parents in ways that might feel like a step backwards and is yet, still developmentally appropriate and autonomous. If you’re a young person and you’re feeling overwhelmed, what we try to do is help them pick the things that are in their control, and then if one of those things is, “Hey, I want my mom to make this decision,” or, “I want my brand new spouse that I married yesterday in my mid-twenties to make this decision,” we try to make that happen.
It’s difficult as clinicians to jump back and forth between different roles of enabling the patient’s developmental needs. The other thing that I think is fascinating about taking care of this age group in particular is to add to what Daniel was saying about what are you supposed to do when you’re a teenager? You’re pushing the boundaries, you’re developing your own identity. That’s true throughout adolescence and young adulthood. You’re also supposed to believe that you’re invulnerable. This is the risk taking period of life where people feel the safest at trying to push those boundaries and take risks.
What we see in adolescent and young adult serious illness is in fact, they have this sudden harsh wake up that they are in fact not invulnerable and that they too could become very sick and have their life be threatened, and what we don’t give them enough credit for is usually, it is much later in adulthood that we start to realize how to find meaning and purpose, how to be grateful for the experiences that we have, how to pause and really appreciate family and community. What we do see is that people who are adolescents and young adults who experience serious illness, they leapfrog all their peers and they get to this point where they start to embrace and identify that life is precious and moments can be precious.
There is this trade off between going backwards in your development because you’re no longer as independent as you might be and jumping way forwards in other pieces of the development, and so again, Andrea, to what you’re asking about, it’s so hard because everybody does that differently. We as palliative care clinicians are really trying to see people where they’re at and recognize they’re on this spectrum constantly trying to find their way again.
Andrea: So often, the ways I’ve learned to work with people is to have them reflect back on times where they knew that they were themselves. Adolescent is finding themselves, or young adult is finding themselves. There are big important questions that you want to hold open for them. The whole idea of holding hope seems also so much more complicated for younger people because the hopes that they had, the normal hopes are not likely to be realized. They have to find other hopes and we don’t know how to do that so well, I think, at least in adult medicine.
Daniel: I will say that there are, for some adolescents, other ways into that sense of meaning and identity, too, that are maybe unique to the adolescent period. I’m thinking about how when you’re a teenager, everything seems so profound and meaningful and the music and the books and the media that they’re reading, it’s exploding in their brain and it’s creating just so much meaning. I was 15 and I discovered Led Zeppelin and it was a religion for me. All of a sudden, I was like, wow. Meaning. It’s everywhere.
Alex: It’s so deep.
Daniel: It’s so deep. I figured I wasn’t the only one, but no, I did this initial consult with a teenager who has leukemia and as part of our initial conversation, he gave a 40-minute monologue about all of the music that he loved and the genres and sub-genres and sub-sub-genres and then what each of those meant to him at a different time of his diagnosis and treatment. It was incredible. It was this amazing introspection and bearing of his soul that obviously not every adolescent can or will do, but he was engaging with some of those big questions of meaning and life and death. It definitely isn’t in the same way that an adult or an older person can do, but there is some capacity for that in the teenage years, and I think I often try to get at it through that avenue.
Andrea: That’s brilliant. You’re also reminding me, one of the issues that I hear over and over again is the fairness that there is, that people will say, “It’s just not fair that I have to do this,” and they’re, I think, talking about a lot of different levels where it’s not fair. How do you grapple with that one?
Nick: Well, it’s not fair. We see this in all different stages of life and working in this field, but I think it’s particularly important when you’re thinking about alignment to that point of everything being so elevated at this age and everything so bright or dramatic or poetic in different ways is that you really have to lean into that a little bit and not be too afraid to swim in it for a while before exploring the things that we might think are important in the room and reminding ourselves a little bit about this idea, this really sucks. “This really sucks, and I’m sorry that we are here. Tell me about the things that feel important to know about you as part of this discussion.”
I think I just have such respect for children and young adults who are approaching these things because I think that they know that people are there to help support them. They also know that this is really unfair, and unless you are able to balance both of those at the same time and do that little dance that Abby’s alluding to, I think it’s incredibly necessary to make sure that you’re not diminishing their experiences just like it always is whenever you work. Whether you’re just teaching teenagers, it’s like this is very real. It’s a real experience to them. It’s how they experience the world. It is very elevated and now we’re throwing a very adult situation on top of it. To not explore it with them feels… I think teenagers are smart and they pick up on that real quickly if you’re not engaged in that area.
Andrea: So part of what I hear you saying in that is that… I forget because I don’t have a 14-year-old round… that the intensity of emotion that’s typical, the world is this close and on fire when you’re an adolescent, that that’s brought of course to this situation. It doesn’t mean that that has to be responded to but open to, but you don’t have to fix it and make it go away or think that this person’s really in trouble emotionally. It’s just part of the normal way of grappling that’s more so among adolescents and young adults. I think that’s a really helpful insight. It’s quite different than the frame of reference for working with people in their 60s, 70s, and 80s.
Abby: The other two things that I think are really different that I’ll add to this are how people in adolescence and young adulthood… This is not unique to 14 year olds. This is true for 24 or 34 year olds as well. It is how folks in those age groups make decisions is inherently social relational, and the unfairness you’re talking about, Andrea, is super important because part of the unfairness is I haven’t had my turn yet. I haven’t been able to live the life that I want. The reason that I’m mentioning the social relational piece is because I think then it manifests and they’re making different decisions than maybe a much older person would. Those decisions are not wrong or bad decisions.
So if a young person is saying, “I’m going to try my 10th round of chemotherapy even though I physically am suffering. The reason I’m doing that is so that I can be around for my daughter or my spouse or my friends,” that’s okay. When we hear teenagers saying even, “I wouldn’t choose this for myself, but my mom really wants me to,” and then we at the bedside feel distressed about them not making the right decision. In fact, developmentally, that is an entirely appropriate decision because what is most important to them is their friends or their mother’s approval. I’m wondering during this conversation if some of the discomfort that all of us feel when we’re trying to age up or down in our practice is again, recognizing how do you meet a patient where they’re at, recognizing that they’re at is very different than what we are usually thinking about.
Eric: So Abby, that’s a great point, and I just wondered too, how much of this, how people make decisions… What do you call it? Social relation? What was the word?
Abby: I think I said social relational, but that makes it sound fancy.
Eric: Social relational. What does that mean?
Abby: Well, okay. It means the person… If you ask a teenager who is most important to them, they’re not going to say their parents. They’re going to say their friends. That is good. If I met a 14-year old who said, “My mom is the most important person in my world,” I would be deeply worried about their overall wellbeing. If you then put yourself back in your teenage years, for example, or think about teenagers today, think about your son, those folks, really, what matters to them is finding their place. How do I fit into this world? How am I different? The push-pull that Daniel was talking about at the beginning, the finding ourselves and figuring out who we are, why it’s so hard, is because we really want to fit in and yet, we really don’t. We really need to figure out who we are in the world and that takes your physical identity, your sexual identity, your vocational goals.
All of those things happen between the ages of adolescence and young adulthood. When you imagine now serious illness pops itself into this whole milieu and somebody is still trying to grapple with who am I and how do I fit in, they look for reassurance from the people around them. They look for that validation. I do wonder, as an aside, if it’s that much harder now in this era of social media where people have even more input to try to figure out how they fit into the world, but I guess what I’m saying is how people in this age group make decisions, how they see what is right or wrong, how they choose to be remembered is entirely around what other people will think of them and much less about what do I personally want? That’s hard, as clinicians who are always patient focused, when you have to expand the circle.
Eric: Well, it is interesting because just throwing in some of the geri stuff, too, is I also wonder how much of that is going on in older adults that we’re just not asking about, because for example, we’re dealing with this with several patients about they wouldn’t want something, but they’re doing it for their loved ones. If we’re not diving into that and exploring how they’re making decisions, we would just have this moral distress. Oh my God. They don’t want this, but their family’s pushing for this, but if you have to dive into it, they want to do it because of their family.
Andrea: I agree entirely, Eric. That came up as I was thinking about this too. The family dynamics are different though. They feel more complicated to me in adolescents and young adults because that differentiation process hasn’t happened yet where people have… They’re figuring out… I think. Maybe this is my ageism, but figuring out how to make decisions, who they are and what’s important to them, whereas when I do have these conversations and this comes up for my 60, 70, 80 year olds, they seem to be coming from a more solid base, if you will. I’m not sure I’ve got that exactly right, but do you hear something in that?
Nick: I think what I hear in that piece a little bit is I do think… While these are interesting questions, regardless of your age and thinking about how you interact with your social world, and I do think there’s a lot of opportunity to explore that more, I do think when you’re talking about children who have grown up in a family and are currently developing, their sense of self is so, as Abby’s pointing out, socially identified. It’s also they can’t separate from their families. In a lot of ways, their sense of self is so intrinsically tied to their immediate family, the people who’ve raised them. They can’t separate that. I do think there is a lot of distress around that.
At some point, we can go to extremes of saying we really need to know just what their goals are, or we really need to respect that they’re children, and we can only listen to their parents. I think we really have to be careful about thinking about those realms and how we have to do this little bit of back and forth of understanding how much is informed with that and that it’s okay that some of their self-identity is so informed by the families in which they’re raised, the culture they’re raised, and the people who not only give them support but really inform who they are. You have to really have a sense of that and respect for that and honor that in a lot of ways in order to be able to build upon that for understanding the kind of work that we need to do in a room.
Daniel: Nick, that’s such a crucial point, and I think it really bears mentioning that we are coming at this from the pediatric perspective where we’re seeing the patients develop from zero autonomy. There’s this spectrum, you can imagine. On one end is the newborn and on the other end is the unbefriended elderly person. Between there, there’s this transition from a newborn having no autonomy. Everything is the parents, everything is the family in their decision, and I know this is not the topic of this podcast episode, but pediatric palliative care teams and pediatricians sometimes struggle with the idea of how do new parents make decisions for their newborn because of those questions of autonomy. Then we go to the other end of the spectrum where maybe there’s someone who just isn’t making decisions based on anyone else, and it’s just all about what they want and who they are.
Adolescents and young adults are right in the middle of that spectrum and somewhere and we don’t know where, and that’s also… I think that was something that came up when I was listening to what you were saying, Nick, is that it’s different for every adolescent. I was thinking back to one of my favorite old GeriPal episodes, and it made me think about how adolescents are the tramadol patients. They’re this unknown mix of toddler and adult, and you just don’t know what you’re going to get with any given teenager, and that’s so hard, especially when they have grown up with a chronic illness, for instance. Then, all the things we know about typical childhood development are out the window basically, and they’re developing in a different way. Andrea, as you were talking about earlier, there are these questions of regression and how much they’re relying on their family. It’s a really hard dynamic to figure out a lot of times.
Abby: I’m sitting here thinking there’s… We can lump and we can split. We’re doing a lot of splitting and talking about what’s unique about adolescence and young adulthood, and then I’m thinking about, Eric, some of your comments because there is some lumping to be done in that often, surrogates are making decisions on behalf of patients in geriatric settings as well. I’m curious about the nuance because it sounds like we, in adolescent and young adult settings, are much more comfortable letting the patient say, “I don’t want to make that decision. It’s up to that other person,” or even the other person on behalf of the patient saying, “No, I’m going to make the decision because I think it’s what’s right for them, even if it’s not what they would want.” I would guess that that doesn’t sit as well.
Eric: I would say it causes a lot of moral distress when the patient is, I would say, middle-aged, the younger old. I do think that there is probably a component of ageism when it gets to the older old around that where there is a lot of moral distress when a patient passes off the decision to somebody else, and you get a sense it’s not directly what they want, whatever what they want means because part of what they want may be they want their son, they want their father, mother to make the decision. I also struggle because I work in the VA, so no adolescents, but the 20, 30, the 35-year olds with maybe young kids, those are the ones that are often some of the hardest from a family dynamic. Parents are involved. You have the younger kids. You have the patient who also may be regressing in some ways to a younger adolescent phase and flipping back and forth. I’m thinking about all my HPM tests I’ve taken before. I think about the development phases. It stops after 18. I don’t think I’ve read anything after that. All of a sudden, we’re full-grown adults.
Abby: We magically mature the day we turn 18. Well, I wanted to go back to your example about the… Let’s say a 27-year-old person. Let’s say he’s newly married and his parents come back because he’s sick and he has kids. Again, what we, I think, intuitively do in pediatrics is we see every single person in that room has had their identity threatened and their life narrative has suddenly changed, and so they’re all in a bad space. The parents are saying, “My kid is supposed to outlive me, and all of a sudden, my narrative as a parent is in jeopardy.” That person’s spouse is saying, “Wait, wait. We were supposed to grow up and grow old together and have children together. My narrative is threatened.” The patient is like, “Well, holy crap. I’m supposed to grow up and be an old dad, and I have this young son and I can’t take care of my family. My narrative is threatened.”
There’s the child in the room who they’re all worried about how is this child’s life going to be different with dad being sick and perhaps not surviving? You have to really see all of the distress in the room and recognize, yes, of course people regress when they’re freaking out like that because what else are you going to do? Part of how we try to figure that out is to maybe lump and split again. How do we see each of you as individuals who are having your own struggles? How do we group you together as a family to recreate a narrative for you? It’s a lot of work. That, to me, is always a really daunting piece of this, and it is so important.
Eric: Can you tell me what you mean by recreate a narrative?
Andrea: Yeah. Yeah.
Abby: To go back, Andrea, to your point about, “Well, this is unfair,” and Nick so eloquently said, “Yeah, it is.” There’s no getting around the unfairness of it. What we can spend a lot of time helping people to do is to rewrite their story to imagine what their story might be. How do you still connect with the person you can become now given the realities that are in front of you now? It is what I think all of the listeners of this podcast already do when they explore hopes and worries and values. We in adolescence and young adult settings spin that a little bit into helping people who we also know are trying to find their identity. I find at least that storytelling is an easy way to do that.
Andrea: I so love that, Abby. Thank you so much. I feel like we, people like me, sometimes lack the imagination because we have already an idea of what that narrative was supposed to have been that we can’t see a place or a way to have people say, “You right now, you are who you are with all your life experiences, all of you here. What could this be now?”
Nick: It’s an important part of this family systems narrative piece a bit, is that I think to your much earlier point about not trying to fix these situations, I think it’s really important to talk about them as reframing or helping to find a narrative within a path that already exists, because you can’t really change a family. You can’t really change the system. That system has been supportive and has gotten to be the way it is for lots of reasons, even if it isn’t always super functional, and the idea around a lot of that is how are we going to preserve elements of that? How are we going to reshape around that and help build that narrative out a little bit more to the point that Abby is saying, and how are you still a parent?
How are you still protecting your 24-year old in the way that you always have while also learning, like any parent would parenting a 24-year-old, how to help them grow while also being really sick? I think just naming that with people and actually talking about this really unique experience that they’re in can help them find that path a little bit so that we’re not deconstructing everything that they have built, but helping to find ways to handle the challenges and return to some sort of homeostasis that’s helpful to them.
Eric: Yeah. Daniel, what are your thoughts?
Daniel: Well, I agree with everything. Both Abby and Nick, you’re talking about things in such a really eloquent way, and it’s making me think about some of the tension that there is when we take care of these adolescent and young adult patients about who do we talk to in the room? When you walk in and there’s your, say, 20 year old patient and their parent, and from a pediatric perspective, again, and I’ll bring this back to the other parts of our pediatric practice, it’s very parent centric, family centric. A lot of times, we’ll take the parents out of the room and talk to them individually because you’re not going to talk to a two-year-old child necessarily about the same things you’re going to talk to their parents about, but for an adolescent, you do have to address them.
You do have to work with them, and you do have to work with their parents and with their siblings, and that’s a whole other thing that we haven’t brought up yet too, is how you work with siblings and bringing in your child life services to developmentally appropriately explain what’s happening to their older brother or sister. It is this… practicing palliative care on multiple different levels all at once or in sequence, which can be really challenging and also rewarding.
Eric: So can I talk about resources? Because let’s say you have a 20 something year old patient that you’re following. They have a 17-year-old sister, 16-year-old brother. What are the resources that we have? You mentioned child life specialists. In the VA, that’s not possible. How should we think about resources and our role on the palliative care team? I think part of our problem is that most of our patients that we see in our service are older than 60, but occasionally, we’ll get very young patients, so there’s an infrequency component too to it.
Abby: Yes. I so appreciated that question, Eric, because Daniel, as you were talking, I was thinking even in pediatrics, there are many places that don’t have the comprehensive interprofessional services that we get the privilege to practice in at some of our bigger institutions, and then Eric, I was thinking about where I feel like, in this general palliative care community, adolescent and young adult patients are the hardest is those folks who do fall between systems, who are in their 30s or late 20s, and you are used to taking care of older people and all of a sudden, you have this person who’s so different and you’re trying to figure out how to take care of them. I will say one of the challenges in the field is many hospices don’t know how to take care of children or young people, and so you have these folks in the community who you’re trying to provide services to, and you just can’t connect them to the same types of resources you’re used to using.
My one little soapbox of this whole conversation will be we need to work on that. We really need to fill this gap and figure out how to take care of these young people in the community. Now that said, I don’t want us to paint this picture that you need all of these resources. It’s great if you have them. If you don’t, we can still fall back on those same skills that we all have, which is to spend some time getting to know your patient’s story and their values and their worries and their wishes and all of the things that we usually do, and maybe spend a little bit more time than you might intuitively imagine with their loved ones and their spouses and their siblings and the other people in the room so that you can put together the puzzle of how to take care of them.
The other thing that I will say is even though I led with there are too few palliative care clinicians in the world, we really love helping, and we really do want to figure out how to collaborate together to meet the needs of these young people, and so what I always say is call the local pediatrics team, call the young adult folks, talk to the other folks in your institutions around other folks in this age group. How might they be connected with resources? You can probably find some answers fairly quickly. The last thing I will say is to pause and think about some of these developmental needs. I always ask people, who helps you? So who are your people? Who’s your community? What are your resources?
Secondly, what have you done in the past when you’ve needed help and when things are hard? So you get to what the person individually might need around them, and last, how are you seeing this experience? What is the impact of this on your story and your identity? You’ll be able more quickly than you might imagine to triage some additional efforts that you might need. So if they say, “You know what? The person who usually helps me is my pastor and I haven’t told them about this.” Well, okay, that’s a fairly easy phone call for you to make as a clinician and a palliative care provider to provide them with a resource that you otherwise might not have been able to connect them with.
Eric: Can I ask, Abby, that third question… I love the third question about how it impacts their story. How do you actually ask that question? Do you say it like that or…
Abby: Early in my career, I did, and people would be like…
Eric: I get what you’re saying, but I’m just not sure I would know. I love the question.
Abby: Yeah. I usually will say something like, “How has this been for you? How does this fit into your story?” Most people will either… It’s fascinating actually because at the beginning, they’ll be like, “It doesn’t. This isn’t my story and I don’t want any part of it,” and then with a little bit of time, you can hear them integrating it. In the cancer space, it might be, “I will never be a person who had cancer. I’m just going to get through this,” and then at some point it becomes, “I am a person with this illness,” or, “This is what I overcame.” I revisit the question, Eric, more than once, to try to help them engage with it, but I think at the beginning, I’ll just say, wow, this is… If it’s for somebody with a new diagnosis, let’s say, of something like cancer, “This is a big deal. This is a life changer. What does it mean for you in your life?” You’d be surprised how people can answer that question.
Eric: I love that. I’m actually going to try to ask that question this week.
Abby: Oh, dear. You’ll have to let us know how it goes.
Eric: I’ll let you know how it goes.
Alex: Can I ask a question about support for the team? Because as we started off talking about why is this so hard, a lot of it was hard for us and the palliative care team, probably hard for the primary providers as well who are consulting us. What are the strategies you use to help the teams who are caring for these adolescents and young adults? I remember when I was a palliative care fellow at Dana-Farber and Brigham, the adolescents were some of the hardest patients to care for. As fellows, we’d rotate who took care of them rather than this is the same fellow the whole time, because it was so hard for any one fellow to manage. Any thoughts, tips, suggestions, questions to ask, ways to debrief? Some of this is what we do all the time with hard cases, but anything in particular about adolescents and young adults?
Nick: I think it’s helpful to think about… Even if you’re coming from a place with limited resources, is this idea that I don’t think palliative care is supposed to be a solo sport, and this idea of these gut checks about why does this feel so hard and who are the people that you were able to talk about that with? When you’re supporting staff, I think that really serves us really well. Whether it’s the nursing team who’s really struggling or residents or trainees who are really having a hard time at the bedside, I think thinking about them and actually creating some of that space to again, name that with them and offer, why do we feel that this is particularly challenging? And talking about the specific issues at hand and their worries about are we engaging the patient?
Are we engaging the family? I think thinking that through with people is incredibly beneficial because I don’t think we’d be talking about this if we all thought it was easy. I think that that gets to the key of part of why it’s so challenging, is just I think we feel like we’re supposed to know how to do all this all the time, and we’re supposed to be able to just glide through it. All at the same time, I think if you’re able to step back and ask those questions, both as a team and internally, I think you’re able to realize, as Abby was pointing out and as others have pointed out, I think those skills that have served you so well in palliative care will continue to serve you, and trusting that, just finding ways to be able to not be afraid to engage a younger person around that topic.
Abby: I think the last thing I would add to that, and Nick, it’s so well put… The piece that I would add is we’re all in this work and we all know when we’ve had a really good meaningful day, when we feel like we have helped and made an impact. Some of the ways that we help as a team is to bring that up because it’s so easy to walk into a room and talk about what was hard and instead, these cases can be the ones that are so impactful and value added in our work. To celebrate those things together and to recognize the ways that we have helped these young people at this incomprehensibly hard period can be one of the most meaningful things that you do as a team to support each other.
Eric: Daniel, any last comments from you before we go on to the song?
Daniel: No, I agree. Embrace it. Really dive in and embrace all the things that make the adolescent patients unique and uniquely challenging and celebrate the good in that.
Andrea: Thank you all so much. It was such a pleasure.
Eric: Andrea, did that help with all the questions?
Andrea: It helped enormously and I can feel my team around me all nodding their heads in appreciation for you.
Eric: I love this. I think Alex is going to kick me off as the co-host now, and he is going to include Andrea because Andrea asked so many great questions.
Alex: Terrific questions, yeah, and thank you for bringing this to us, and if there are listeners who have ideas for podcasts, we do take suggestions and we love hearing from you, so please feel free to reach out to us.
Andrea: But beware. [laughter]
Eric: That you may be on podcast episode. Alex, you want to give us more, a little… What was it? Let It Grow?
Abby: Let It Grow.
Alex: Let It Grow. (Singing).
Eric: That was awesome.
Abby: Thank you.
Eric: Andrea, thanks for bringing up this topic and being on this podcast. Really great questions. Abby, Nick, huge thank you for coming on, and Daniel, I feel like this was a great crossover episode.
Eric: It’s like Joanie Loves Chachi. [laughter]
Daniel: We’ll have you guys come on soon.
Abby: It’s going to be so good.
Eric: The other thing that I want to highlight is I just love the fact… There’s a wealth of knowledge and expertise that I think a lot of adult palliative care providers can learn from palliative care providers who are pediatric palliative care providers. I learned a lot just in this hour. Love to think of the idea of future episodes together. With that, I just want to thank all of our listeners for your continued support. Thanks everybody.