A Deep and Abiding Love

Dr. Adam Marks shares a profound story from his experience as an early career palliative care physician, focusing on the delicate balance between truth telling and maintaining hope for patients and their families. He discusses the emotional complexities involved in delivering serious news, the importance of fostering vulnerability and connection, and the transformative power of sacred moments. He reminds us that grief and joy can and do coexist, especially at the end of life. Through his reflections, he emphasizes the significance of authenticity and the privilege of being present during pivotal moments in patients' lives.

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Transcript

Prelude

Adam Marks (00:00)

And a few days later he came out again and he said it happened again. She woke up and she found me crying and I used your words. I said, you know, honey, I'm a doctor and I'm so sorry that I can't get you better. I wish I could get you better. And she responded. She said, Dad, it's okay. I know that when I go to heaven that I'll see you again there. And he said, and then we had, then we cried together.

Show Introduction

Nate Houchens (00:46)

Hi and welcome to Boundless Moments, the storytelling podcast that brings sacred moments to life through the voices of those who lived them. I'm Nathan Houchens. Support for Boundless Moments comes from the Sacred Moments Initiative. 

At Boundless Moments, we are careful to ensure that all stories comply with healthcare privacy laws. Details may have been changed to ensure patient confidentiality.

All views expressed are those of the person speaking and not their employer.

Some stories featured on Boundless Moments may contain themes or content that could be upsetting for some listeners. We encourage you to use discretion and take care of yourself while listening.

Introduction: Adam Marks

Nate Houchens (01:32)

In this episode, we hear from Dr. Adam Marks. Dr. Marks obtained his MD and MPH at the University of Wisconsin before coming to the University of Michigan in Ann Arbor, where he completed a combined internal medicine pediatrics residency, followed by a fellowship in hospice and palliative medicine. He is currently a Clinical Associate Professor of Medicine in the Division of Geriatric and Palliative Medicine at the University of Michigan. In addition, he serves as section head of the adult palliative medicine program at Michigan Medicine, the director of education for the palliative medicine program, and as a hospice physician for Elara Hospice. Since 2016, he has also worked as a faculty ethicist within the clinical ethics service at Michigan Medicine. His work focuses on caring for both adult and pediatric patients living with serious illness. His clinical interests include symptom management at the end of life, clinical ethics, and effective communication around goals of care and advance care planning.

Introduction: A Deep and Abiding Love

Nate Houchens (02:34)

In the conversation that follows, Dr. Marks shares a profound story from his experience as an early career palliative care physician, focusing on the delicate balance between truth telling and maintaining hope for patients and their families. He discusses the emotional complexities involved in delivering serious news, the importance of fostering vulnerability and connection, and the transformative power of sacred moments. He reminds us that grief and joy can and do coexist, especially at the end of life. Through his reflections, he emphasizes the significance of authenticity and the privilege of being present during pivotal moments in patients' lives.

The Story: A Deep and Abiding Love

Adam Marks (03:31)

The story that I want to share with you today happened during my fellowship as a hospice and palliative medicine doctor. We were rounding on the adult inpatient consult service, and the patient was a woman in her early 20s who had a developmental disorder. She had cognitive delay. And I remember that she had the mentation of about, I feel like a seven or eight year old. So she was cared for by her father who was a physician. Bio-mom was not in the picture. And she had gone on to develop metastatic ovarian cancer, which was not an unknown thing with her condition, very unfortunate. And she had come into the hospital with a small bowel obstruction related to her underlying malignancy. The medical team had been talking to dad about the fact that she was not a candidate for systemic chemotherapies and that we were entering the terminal stages of the disease. She was in the hospital, was on TPN and sort of ongoing conversations about what her care would look like moving forward, knowing that we couldn't cure her cancer. 

And dad, maybe not too surprisingly, was very, very protective of her and sort of the information that was shared with her. Early on in our following, he said, I don't want my daughter to know anything about the fact that her cancer could no longer be treated. She knew that she had cancer and had been undergoing treatment prior to this admission. I think she had the diagnosis about a year at this point, but he did not want her to hear the words terminal, did not want her to hear the words hospice, certainly. And at this point, she was not comfort care. She was continuing to receive the hospital-based treatments as they were. 

And so he would come outside of the room to round with us when we came by. We would discuss some of the planning for the day, hear from him what was happening, and then we would go together to the bedside to chat with her. And again, he was very, very, I don't want to say controlling, but definitely tried to be a gatekeeper for the communication that was shared with her. 

One morning, as we came by to do our morning rounds, he came out and said, she caught me crying last night. She woke up and I was crying and she asked me why I was crying and I lied to her. You know, I said, oh I'm frustrated about something at work or there's this other thing that happened. You know, I didn't want to say I was crying because they can't treat your cancer anymore. You're dying. And so his question to us was, what do I do? Right. What do I do if this happens again? I'm obviously very sad about my daughter. And this could happen again. What do I, what do I tell her? And I, you know as a fellow, I certainly didn't have the words then to explore this with him, but one of our team members did. One of the NPs (nurse practitioners) on our team was able to guide him through what it would mean to do some gentle truth telling. And I remember she said, you know, you don't have to tell her that she's dying. You don't have to tell her that she's terminal. But you can be honest about what you're feeling. You could say, you know, I'm crying because I'm a doctor and I'm used to helping people and I wish that I could make you better. And I'm really sad that I can't. That's a way that you can be honest without having to engage her in sort of a frank conversation about her dying process. Because again, with this cognitive delay, he was worried about what she could and couldn't understand and of course, was wanting to protect her from scary information. 

So things continued in this fashion. She stayed in the hospital. We would follow for symptom management and sort of psychosocial support while we were plotting out some different options for her care moving forward. And a few days later, he came out again and he said, it happened again. She woke up and she found me crying and I used your words. I said, you know, honey, I'm a doctor and I'm so sorry that I can't get you better. I wish I could get you better. And she responded. She said, Dad, it's okay. I know that when I go to heaven that I'll see you again there. And he said, and then we had, then we cried together. She made this tacit expression of understanding. I know that I'm dying. I'm thinking about going to heaven, right? Like with a lot of our pediatric patients, she knew more than we thought that she did. But he said, this was such a moment of connection and intimacy between my daughter and I that we hadn't had before. Being able to share that was one of the most meaningful experiences that we had. 

And afterward, after continued conversation, she was supported at home on TPN for a while, and then transitioned to hospice care. And one of the things that we heard later from the hospice team is he mentioned this story again and again, as being this opportunity that he wouldn't have had, had the nurse practitioner on our team not given him words to use to open that door. And I think about this a lot, because not uncommonly we have family members who will say, you know, I don't want to tell my loved one what's happening or how do I tell my loved one, be it a child, be it a family member, be it something else. And, you know, and I'll use those words, right? We don't have to, you know, if we're worried about what someone's ability to understand something is, right? Then we should think about how can we provide the best information? I never obviously want to lie to patients, but there's always space to acknowledge sort of the emotional reality. 

And I think about what a gift it is to allow people in a family to be vulnerable with each other. Because my job is for however long someone has left, I want them to be able to engage with the people in their lives in a meaningful way. Almost everyone I meet says that, you know, for however long I have left, I want to focus on my friends, my family, for some people, faith. And if we're hiding things from people that we love, especially big things, that sets up a big barrier. And I think that can lead to alienation and I don't want that. And so this is a story I tell a lot to trainees, but sometimes to patients and families, you know, again, who are, in a very loving way, trying to protect their loved ones from some scary information, when in fact, I think that could be a barrier to being close during a really difficult time.

Interview

Nate Houchens (10:27)

I’m here with Adam Marks. Adam, I just want to thank you so much for sharing that really impactful, profound story between a father and his daughter and about sort of the balance between our duty to tell the truth and I heard some themes as well about hope and even what many people in healthcare consider failure, which is death, and which is something that we all face. As a palliative care physician, I'm sure you have these conversations regularly.

And so I was hoping to expand on your story a little bit with a few questions. You know, the father seemed really protective of his daughter as one might imagine, especially when it came to preserving her hope. I'm curious how that affected your approach and your team's approach in delivering care for her and in the communication that you had with the family.

Adam Marks (11:24)

Yeah, it's a good question. And I think a lot of times when we have a request to withhold information from a patient, particularly in the adult hospital, I think it can cause a lot of distress among team members. Because of course, I think we all have as our expectation that we'll be honest and truthful with our patients. And that is a very reasonable standard. 

In this instance, because of her cognitive delay, she was not her own decision maker. Her father was her legal guardian. And so what that meant is that I didn't necessarily need her to be a decision maker, but of course we still generally prompt appropriate truth telling in all instances. I think what we recognize in palliative care is that that request, please don't tell my loved one what's going on, often comes with a whole mix of emotions behind it. Some of it is, I don't want to think of it, it's a form of denial, right? I don't want to have to talk to them about the dying process, that makes it more real. I think at the core of it, I always remind myself, is a deep and abiding love, right? I desperately love this person. I want to protect them from scary things. And I think as a parent, when our child is threatened, we feel this immense sense of loss of control. And so then we focus on what we can control. And for the dad, right, I can't control the disease. I can't control what's happening to her body. But what I can control is what she knows of it and what is being communicated at the bedside. 

In pediatrics, we talk about our patients not existing as an individual unit, they exist as part of a larger family structure. And I think palliative care appreciates that as well, that the wrong thing to do would be to kick in the door and say, no, we have to tell this person exactly what's happening to their body, violating dad's role as a protective figure would have blown up our ability to interact with her and him. 

And so because we weren't asking her to make decisions, we knew that we had this luxury of space and time to explore this with him, to allow them that control. And to encourage this gentle, emotional truth telling. I don't expect him to walk in and say, I'm so sorry that you have stage IV serous ovarian cancer, now it's metastasized, causing small bowel obstruction. She wouldn't understand that, that would be scary to her. But again, communicating with her in a way that she can understand, which we started doing, and he and she were able to figure it out together in the dynamic that they had established through their lifetime.

Nate Houchens (13:45)

I'm struck by this powerful shift in the story when the father shares or starts to share his feelings of sadness, perhaps unexpectedly, with his daughter. I'm curious, you weren't there for that first moment, but I'm curious how that moment and then the subsequent moments unfolded from your perspective and what seemed to be the impact on each of them moving forward.

Adam Marks (14:11)

So, you know, I will say that one of the jokes I often make about physicians, present company excluded of course, is that doctors are emotionless robots. Our medical training kind of actively beats out our emotional intelligence. There's some data to back this up. So I don't think that I was expecting him to even be honest with us about his grief and sadness. You know, and I think the careful relationship building that we had been doing up to that point allowed him to share this, oh my gosh, she saw me cry, right? Which isn't something I might have expected.

So for us, that was a signal that, I trust you guys, right? You are a safe place to be vulnerable in front of, again, especially for people who I think have a hard time accessing emotions. And so for my nurse practitioner to be able to push that even more, right? To say like, thank you for being vulnerable with us. Let me ask more of you, right? Let me now ask to extend that vulnerability to your daughter, I think was a really brave thing. 

One of the things I will tell the trainees in palliative medicine is that our job is to push conversations past the point of comfort. If we only talked about comfortable things, I wouldn't be able to talk about the very serious natures of the illnesses that people have that we take care of. And that was a great example of it, right? This person is being vulnerable with us, we're gonna acknowledge that and then take it one step further, right? You don't have to tell her that she's dying. But what we can say is I'm very sad and I wish that I could make you better. It's a very loving statement that probably, I think because he felt comfortable using it, already was something that he was comfortable expressing, that his job is a caregiver. In very real way, I think it called upon what he saw as his role as a protector. I'm protecting you from this scary news and I wish that I could continue to protect you moving forward. 

So that was I think a really powerful statement, something that we debriefed a lot about afterwards. And then when he was able to tell us, my gosh, right, and I always, I get chills every time I tell it, we cried together, right? This for me then says, not only was I able to do this scary, vulnerable thing, but I was able to derive such meaning from it, right, to foster this closeness that we didn't otherwise have. And for him to reflect how valuable it was.

And not even necessarily at that moment, but later on, to hear that he continued to reflect on this moment, that this was a profound experience that he was sharing with other people that he was carrying moving forward. I think for us really highlighted the value of our work. And as you identified before, as I think about failure and success in palliative care, for me, was an immense success. And honestly, a moment of joy for our team to be able to share in the midst of a profound grief, profound loss for him to know that we had given him that brought us a lot of meaning.

Nate Houchens (17:08)

Yeah, it sure sounds like it's, it was such a pivotal moment and one that lasted with him and with your team moving forward. It, you know, as reflected by the fact that you continue to tell this story to me and to our listeners and to your trainees.

Adam Marks (17:24)

It's 13 years later. This is the story that I tell not infrequently.

Nate Houchens (17:28)

Oftentimes on Boundless Moments, we hear from people who share what we call sacred moments or boundless moments, and they are sort of directly involved. They are the individuals that are experiencing this transcendence. It sounds to me that you and your nurse practitioner and your team felt more like facilitators of this sacred moment between a father and his daughter. And I wonder how often that happens in your line of work.

Adam Marks (18:00)

What a great question. There are certainly moments of transcendence that we have the opportunity to bear witness to, and that does feel very special. But just as many, I think, are shared with us after the fact. And when we have a direct role in that, obviously, like in this instance, I think that feels very special and meaningful to us. But sometimes people will share sacred moments with us, to use some of your phraseology, that happened many years afterwards, or happened many years previously.

And so they'll say, my gosh, in my life, these are the things that happened that were so powerful. They'll talk to us about their 50-year marriage. They'll talk to us about raising their children. They'll talk to us about challenges they've overcome. And in our line of work, we call it a life review. And that some people, when they are faced with a terminal disease, will do this natural reflection and feel that need to express it. And it always feels like such a gift to be able to share it. That simply hearing the story feels like a moment, a sacred space. And again, we will oftentimes express it like, thank you so much. I can't tell you how much I appreciate you sharing us with this story. If the patient themselves is unable to communicate and the family is sharing these stories, then I will say, thank you for bringing the person into this room. We meet people in such narrow windows of time, and it is so helpful to hear about them as you knew them in the fullness of themselves. Because I don't get to see that, right? By definition, I am seeing you typically at the later stages of a serious illness in a very different way than how you've been the rest of your life. And so again, to hear those moments, I think is a really valuable thing for me, at least, to share. 

So it's something I'm a little bit used to, I think. And to recognize, too, that as a physician, and this is something else I tell my trainees, I'm not the point. Like our team isn't the point. And so I say this about grief experiences. Our grief is not the point. We could share the loved one's grief, but we should not make ourselves the focus of it. And so, you know, just to hear about these moments of transcendence that people experience, either in the context of it, or before, that the telling of it, the sharing of it by itself, feels very familiar as a sacred area that we are a part of too.

Nate Houchens (20:35)

I'm curious how that impacts you personally and professionally. I mean, hearing these stories even after, well after in some cases, your sort of direct involvement in the care of the person. I'm curious what impact, how that lands when you hear these stories from family members and loved ones?

Adam Marks (20:54)

I'll tell you another story just to illustrate it. A while ago now, I was working on a grant application and I had administrative support that was helping me put together the application and I had to share some words and had to share some examples of past publications I had done. And she responded back. She's like, oh my gosh, I didn't realize that this was your area of expertise, like end-of-life care, palliative care. And she says, oh my gosh, such meaningful work. So glad that you do this. And she signed her email “have a nice day, parentheses, if that's even possible in your line of work.” And I responded back, and I don't typically respond to those things, you know, because I think people could have strong reactions when I tell them what I do, I usually just let it wash over me. And I said, thank you so much for your email. I do want to let you know that while yes, there is sadness and grief and loss in my work, it is far more defined by these moments of joy, by these moments of meaning, which we hold with profound value, right? And a sense of the gifts these moments are. 

And so, you know, I oftentimes get the larger question of like, how do you do this work? And the answer is it is intensely uplifting. And all day long, I have for me affirmed the things that are most important in this life. You know, so what people don't tell me about necessarily is the suffering. Sometimes I get these stories of suffering and loss and grief. But as people are reflecting on their life, what I am hearing is, let me tell you about this work that I did that was so meaningful. Let me talk about the children I raised. Let me talk about the volunteer work that I've done. Let me talk about my faith experience. Let me tell you about the relationships, the people in them. And so for me personally, you know, this profession has allowed for immense personal growth and a different way of comporting myself with my own relationships, with my professional responsibilities, with my role as an educator and as an administrator, and just being able to hold these spaces, you know, both with a greater sense of their import, but also with a little bit of lightness as well. So as I think about these stories and how they affect me, never once, I can't think of a single time in my life where I've taken them for granted. Like they always feel fresh and new for me. It is always the sense of profound privilege to have them shared.

Nate Houchens (23:17)

I really appreciate that. And when I hear you talk, it reminds me so much of some communication skills training sessions that we offer to medical trainees and faculty. And sometimes I draw the distinction between two serious sort of conversations that, that trainees can have. And the distinction is between delivering serious news, the new sort of life altering diagnosis, the fact that the treatments are no longer working. And then the second is goals of care conversations. What a patient or patients would like for themselves. What are their values and wishes and dreams with the time that's remaining? 

And sometimes I'll draw this distinction between delivering serious news, which often has this very somber, as the name implies, serious nature to it that is often filled with grief and sadness and all sorts of other complex and mixed emotions. And I draw the distinction between that and goals of care conversations in which healthcare providers ask questions of patients: What is meaningful to you? What gives you joy? What does a good day look like? 

And the tone, I think, between those two types of conversations, there's a lot of similarities. And yet what I'm hearing from you is that your role spends so much more space in that conversation that gives joy. Because when patients talk about their goals of care, they talk about their values and their wishes, they often reflect, in my experience, they often reflect on these really powerful, meaningful moments in their own lives. And that just shifts the tone so intensely. I'm curious if you've noticed that in your own work.

Adam Marks (25:07)

Oh absolutely. I think, you know, if I've done my job right, you know, that these conversations that we have about goals of care, end-of-life planning, they are an opportunity, they open a door for this sort of life reflection, which is oftentimes a very joyful experience for people. To give them the opportunity to reflect on these things that they have done that they are proud of and the meaningful relationships that we have. 

Sometimes we have these cases, I think every doctor feels this way, where I say anybody could have done that. Right? Like I didn't make a difference here. And then there are those cases where we say, no, no, no, we made a profound difference, you know, and it was our team. Maybe it was even me as a clinician who said the right word or made the right decision or made the right call that drastically changed this outcome for the better. And I think we can all think of a handful of cases where that was demonstrably true. And we, you know, if we're smart, we carry them deep within us, right? And we bring them out on those difficult days and we say, oh, this is the time when I helped. And this is one of those cases. And I'm happy to say that my line of work, I can think of lot of examples where here's a time where I made a difference and changed an outcome for the better.

Nate Houchens (26:12)

It almost feels like your role and your nurse practitioner's role in this example served as sort of a guide or a facilitator for the father to sort of allow himself to be emotionally vulnerable. I'm curious how that landed with you and your team.

Adam Marks (26:30)

Oh definitely. You know, I think one of the things that we talk about is that there's no right or wrong way to grieve. There's no right or wrong decisions when it comes to end-of-life care. And we'll often say this to families. And I will tell medical teams, I sometimes have to walk them back from expectations. So sometimes people think that they can call palliative care, my job is to get the DNR, right? Or my job is to talk the family into less aggressive treatment. And I start to say, absolutely not. Like my job is to sit down with patients and families, have a thoughtful conversation about the state of their illness, what their options are moving forward, and to make sure that whatever decision they make is an informed one. And to open these doors. There are plenty of times where I've tried to open doors of vulnerability and someone hasn't wanted to walk through it. One of the ways that I do it is I'll say, some people in your situation might have really big worries about their disease. Some people have told me, oh my gosh, I at night, I worry that I'm going to die. Like, is this a worry that you've had? And some people say, absolutely, this is a worry I've had. Thank you so much for bringing this up. Like, I didn't know how to talk about this with my doctors or with my family. And other people said, nope, I don't want to talk about that. And I say, great. We don't have to talk about anything you don't want to, right? My job is to sort of gently try to push a conversation past that point of comfort and see how far they will walk with me.

Nate Houchens (27:49)

That act of normalizing and recognizing that other people have gone through this experience… I suspect is so powerful and so important for many people who are used to seeing healthcare outcomes on TV that people in the healthcare industry recognize are very, very inaccurate, especially toward the end of life, especially in urgent or emergent situations. And so I suspect that when people start to worry about this, when people start to have their questions and concerns, it is tough for them to ask. And so I think that act of normalizing and saying, other people have experienced this, other people have gone through this, other people have had these questions, I suspect is really powerful. And it sounds as if that is what you've noticed as well.

Adam Marks (28:42)

Very powerful and very effective and very simple. You know, it is not, you know, simply, I jokingly call it my theoretical family. Some families think about this, some families worry about that. Is that something that you've had? On one hand, I think when I meet with people, I try to give them the weight of their experience and grief. And I will say, I'm not going to sit here and pretend to know what it is like to be faced with an illness that you're faced with, or to say, or to bear witness to your loved one’s struggle with this disease, right? All of us have had our own health experiences, our own grief experiences, and even if I have borne witness to a loved one dying of a serious illness, that doesn't mean I know anything about their experience. And so one of the things I hold is the “I understand.” I know this is hard for you, I understand this is difficult. And I say, no, I don't understand, I can't imagine. 

So on one hand, I might give them that. And on the other hand I say, and I have seen this before, right? And in my line of work, I have met other families in similar situations and some of them tell me this, does this resonate with you? And so sometimes when I simply say like, no, well, what are you hoping for? Or what are you worried about? That's too big a question. Like, my God, I don't even know what I'm hoping for. I'm so overwhelmed. And so giving some of these examples can sometimes kind of prime the pump in that way to say, yes, I've had that too. Again, sometimes it works, sometimes it doesn't. But again, my job is to kind of open doors and to see, you know, to see where people will go when we create that space.

Nate Houchens (30:25)

I've mentioned the term sacred moments. I've mentioned the term boundless moments. And I'm curious how you would define, for yourself, the sacred moments or these powerful, profound moments that you've experienced. I'm curious how you would describe them.

Adam Marks (30:42)

So, you know, this is something that I have thought about in palliative care in my work in clinical ethics. We think a lot about the words that we use because we know that they really do matter. So when I think about the term sacred, for me, it means anything that connects me to a sense of something larger than myself or outside of myself. And for me, it is almost always a connection to those around me. 

You know, so when I say something larger than myself, really could be between me and one other person, right? Like we are having this sacred moment, the two of us, like we are connected in a way that brings me outside of myself and acknowledges this relationship that you and I have together. And maybe you and I have met for the first time today, right? Maybe, and I'm catching you again in a vulnerable moment of serious illness that allows for these barriers to be broken down in ways that that wouldn't normally be. 

Maybe I'm connecting with you and your family. Maybe I'm connecting with the community. And sometimes I feel this, you know, if I'm public speaking. And you may have had this too, right? You're getting a lot of energy from the audience and you're connecting to something bigger than you. And this feels really profound and typically very positive. You know, I'm not terribly religious, but I have had experiences in nature where I have connected to this sense of something larger. It's like we are connected in a way that I don't always get to engage in. For me, that is sacredness. And for me, that is these sacred moments is this larger sense of connection outside of myself. And I'll say it again, my line of work gives me routine and easy access to that. It's oftentimes with a sense of profound gratitude that as I reflect on my work that I have found this profession, because I find it so so valuable.

Nate Houchens (32:21)

Sometimes these moments can be described, at least in the literature, as sudden intimacies. And hearing that term, especially as I'm just meeting a patient or a family member for the first time, those kinds of descriptors are really apropos. It is, I am meeting you in a really vulnerable, important, potentially life-changing moment in this existence, in this world. And in those moments it feels like these opportunities for connection are just so much more prevalent and rich.

Adam Marks (32:57)

They absolutely are. I will say, I feel like I'm dropping a lot of Marks-isms. But one of the things I often say to students is that in my line of work, again, I oftentimes meet people on one of the worst days of their lives. They're in the hospital because things aren't going well. And that is a very vulnerable time, but it is, and I'll use your words, it is a very sacred time. And it feels like a gift. It feels like a privilege. And I try to really honor that. I try to hold that sense of it. 

You know, there have been times in my 13 years as a faculty member when I have not been well, right? When I have been burned out and I have been frustrated between a combination of work things and home things. And one of the things that I've noticed, one of the first signs that I will pick up on is when I am not engaged with my work clinically, when I can't hold that space, when I am sort of by rote, either saying some of the words or attending to the needs of a patient or family. And when I'm doing well, it is when I can bring that sense of vulnerability and intimacy to those encounters to have those moments. 

So yeah, I think in general in medicine, we have access to these moments more so than other professions do. And I think the best of, you know, when we are our best selves, we ourselves are more open to them, right, than at other times. And so that's something that, again, I talk about with our faculty and our staff is what it means to keep ourselves open to these moments of intimacy.

Nate Houchens (34:24)

What do you say to those trainees, those faculty, those individuals that you come across in healthcare who disagree and who say, my job is not to connect in these ways. My job is not to have these moments between people. My job is simply to deliver healthcare. I'm curious if you have thoughts about that very prevalent perception.

Adam Marks (34:52)

Yeah, you know, I will say that I don't tend to, I won’t argue it. I don't necessarily, you know, try to talk people out of it. Just like I don't know that there's necessarily a wrong or right way to grieve or approach a loss experience. I don't know that there's necessarily a right or wrong way for physicians to comport themselves. And so I've met people who tell me, I can't, like that is too vulnerable, can't shut it off. And so it could be a protective mechanism for some, I think, to say I'm a mechanic. My job is to identify the problem, to fix the problem, address the problem. And I say, listen, if that is how you get through this very meaningful and needful work, then bless your heart. You know, fantastic. What I do ask is that for people to have an awareness of that about themselves, to say that this is not something that I bring to the bedside, but I recognize it as meaningful. And I have other members of my team, maybe other physicians, NPs, social workers, chaplains, who could bring that work.

What I will say about providers is I don't expect you to be all members of the interprofessional team. I don't expect you to attend to complex psychosocial affect. I don't attend to plunge the depths of spiritual distress or to know all the different interactions of a person's pharmacologic list. I do expect you to screen for those distresses, to recognize when they're there, and to know what you can handle or not. I mean, just like, you know, not all palliative care doctors are created equal. We all have our strengths and weaknesses when it comes to identifying these things and responding to them.

And so I don't argue it. I will say privately, I will say, I’m sorry for you, because this isn't a vulnerability. This isn't a negative aspect of medical care. This is the best part of medical care. This is what I think a lot of us got called to medicine to do because we wanted to help people. And we recognized that it's a profound connection to people that we help to be able to serve them in this way. I think when you hear doctors and their origin stories, it often comes from a profound place of service. I want to help. I had this experience with a loved one. Maybe I saw a loved one in a doctor role and felt like, oh my gosh, look at that. How admirable. I want to do that too. So it oftentimes comes from this place of I want to help people. And I think helping includes certainly the mechanical aspects of medical care, but also this ability to connect on a larger level. At least for me it does. But I'm not here to argue what brings meaning to people’s lives.

Nate Houchens (37:16)

It reminds me of the fact that, just as with our patients who have their own unique lived experiences, who are we to sort of judge without knowing a physician or a healthcare provider's lived experiences that have shaped them into the ways that they deliver care and the ways that they connect with others.

Adam Marks (37:36)

Absolutely agree.

Nate Houchens (37:39)

So the story that you shared really speaks to the intersection of life and death and complex dynamics between hope and honesty. How do experiences like the one with the father and his daughter shape your perspective on what truly matters in these moments of profound connection, regardless of who they're with or where they are or with what? What makes these moments so transformative?

Adam Marks (38:10)

So, you know, I'll say a couple of things. One is that when I hear, I think this idea of kind of truth telling and the pitfalls of truth telling, we commonly hear it will take away hope, will cause some damage. And I don't want to take away from the fact that, you know, hearing bad news about prognosis, hearing about bad news about death can cause distress and can cause grief and can cause, I don't want to say harm, but can cause feelings that are hard to manage.

But what I will say is that I think the human heart is also big enough to hold different things at the same time, right? And so we can hold hope with one hand while also process difficult information with the other. And I see this time and time again. Certainly when I have family members who say, don't tell my loved one XYZ, 99% of the time, they are grossly underestimating this person, number one knowledge, right? Like this case, this person already know, even with their cognitive delay, they knew they were dying. They live inside their body. They knew what was going on. And I suspect they were trying to protect their dad just as much as the dad was trying to protect them, right? There was this bi-directional, I love this person, I want to keep them safe, instinct going on. So that's why I always tell people we can hold two things at the same time. We can hold hope, we can hold these worries and thoughts at the same time. 

The other thing that this case brings to mind to me is that as much as we do set up walls and boundaries, even between ourselves and the people that we love, we are constantly trying to connect. We are always wanting to bring our most authentic selves to those around us. And there's a lot of reasons why we struggle with that. And a lot of them are sort of preconceived notions about what our role is, right? Again, this dad, I think, you know, male physician doctor, I think had this idea that I'm, you know, my role is strength, like my role is as a protector, you know? And so I am not supposed to share my weaker parts, right, my vulnerability with this person that I'm supposed to take care of. And as a parent, that resonates with me, right? I don't like to tell my children that I'm sad, when I'm stressed. Like my job is to take care of them when they are sad and scared and stressed. But that we're always, we want to do that with the people around us. And again, what I see my role is to do is to help people be their most authentic selves in a way that feels safe and secure for them.

And to try to understand their dynamic, to try to understand their narrative within their family and allow them that space. You know, we talk about in, sometimes in communication diagrams, there's the bi-directional flow between patient and doctor or family and doctor. But then I also think about the arrow between patient and family. And my job is to try to facilitate that as well. Because when a patient and their family aren't communicating well with each other, or if they're hiding things from each other, then again, that creates a real chasm between them that precludes those moments of intimacy and vulnerability, those sacred moments that they, that I want them to have.

Nate Houchens (41:14)

And what a privilege it is to be able to get a glimpse in that interpersonal dynamic, in that profound relationship.

Adam Marks (41:23)

Absolutely. Oh my gosh, it is, again, always feels like such a gift.

Nate Houchens (41:27)

Speaking of privileges, Adam, it was a real privilege to have you on the show. Thank you so much for sharing your time, your wisdom, your expertise, and your perspective around this really momentous event in your training and in your career. Thank you for being here.

Adam Marks (41:42)

Thank you for having me. What a gift it is to be able to share this, but then also just to be able to explore it with you. I think this, this is a highlight of my week. Thank you for having me.

Nate Houchens (41:52)

We are grateful.

Postlude

Nate Houchens (42:14)

We would love for you to be a part of this movement, and we would be honored to hear your story. If you have experienced a moment of grace, connection, or empathy that changed you, we invite you to submit it for consideration to be shared on Boundless Moments by sharing, you not only contribute to a collective celebration of human connection, you may also inspire others to recognize and cherish the sacred moments in their own lives. To discover more about sacred moments and to share your own story, please visit sacredmomentsinitiative.org.

This episode of boundless moments was produced, edited, and mixed by Nathan Houchens. Our program manager is Jessica Ameling, and our publishing and social media manager is Rachel Ehrlinger. Our podcast is made possible by the Sacred Moments Initiative, a humanistic project whose aim is to study, catalog, and share sacred moments. Learn more at sacredmomentsinitiative.org. Boundless Moments is also made possible by donations from listeners like you. Thank you so much for supporting our work in sharing sacred moment stories. If you enjoyed this episode, please subscribe to the show wherever you get your podcasts and drop us a rating or review to help others connect with us. I'm your host, Nathan Houchens. Thank you for joining and until next time, be well.