Cancer nursing; careers in perfusion; parents' health care decisions: Upstate Medical University's HealthLink on Air for Sunday, Feb. 16, 2025

Host Amber Smith: Coming up next on Upstate's "Health Link on Air," an oncology nurse tells how she chose the career she loves.

Lauren Calloway: ... Then of course, the patients, I love them. They're so nice to work with. ...

Host Amber Smith: The director of cardiovascular perfusion discusses the profession of key members of hospital operating room teams.

Bruce Searles, PhD: ... We operate devices that are the most extreme life support systems. We're often involved on cardiac surgery teams, assisting the cardiac surgeon, anesthesiologists and all the other health professionals. ...

Host Amber Smith: And a pair of bioethicists talk about parents making health care decisions for their children.

Amy Brown, MD: ... And the goal is to reach a shared decision that even if we can't say it's absolutely best, we can say is really good enough, is going to keep this child safe and protect them from harm. ...

Host Amber Smith: All that, and a visit from The Healing Muse. But first, the news.

This is Upstate Medical University's "HealthLink on Air," your chance to explore health, science and medicine with the experts from Central New York's only academic medical center. I'm your host, Amber Smith. On this week's show, educating people to become cardiovascular perfusionists. Then, what happens if a parent's health care decision will harm their child? But first, meet the winner of the first annual Beth Baldwin Oncology Nurse Award.

From Upstate Medical University in Syracuse, New York, I'm Amber Smith. This is "HealthLink on Air." Today I'm talking about oncology nursing with Lauren Calloway. She's a nurse at the Upstate Cancer Center who received the first annual Beth Baldwin Oncology Nurse Award. Welcome to "HealthLink on Air," Ms. Calloway.

Lauren Calloway: Thanks. Nice to be here.

Host Amber Smith: The award you received from the Carol Baldwin Breast Cancer Research Fund is for the oncology nurse who represents excellence in care and passion for cancer patients. This is a meaningful award from a meaningful research fund that has raised more than $4 million for breast cancer research at Upstate. So how did it feel for you to receive the first annual nursing award?

Lauren Calloway: It was actually really, really cool. I was pretty surprised, because I actually hadn't really heard about it before. I got told I got the award. And then actually when I was there too, receiving the award, Beth Baldwin was there, and she said it was a surprise for her in January that her family told her they made the award in her name. So she was even more excited about it, too. Because she has, she does a lot in the community with all of that.

Host Amber Smith: So somebody nominated you -- a coworker, or a patient? How does that work?

Lauren Calloway: Yeah, so, my coworker, she's actually one of my clinical leaders, Mariel (Weston). So she nominated me and wrote a little blurb about how I do at work and how she thought of me as a nurse. I guess with the Beth Baldwin award, they look at all the nominations and then, the committee there votes on who gets it. So, it was pretty cool. So I was, I really like Mariel. She's a nice coworker and a nice friend, so it was a nice, sweet surprise.

Host Amber Smith: Oh, very nice.

Lauren Calloway: Yeah.

Host Amber Smith: Well, let me ask you, when did you decide that you wanted to be a nurse?

Lauren Calloway: I've probably always known I wanted to do health care for a long time, like, since I was little. But, I was interested in becoming a vet at first, but I'm scared of cats, so I quickly decided not to do that. So people are definitely more for me. So when I was in my junior year at Le Moyne (College) doing my undergrad in biology, I was trying to decide between nursing and PA (physician assistant) school.

St. Joe's and Le Moyne came out with their first-ever advanced dual-degree nursing program. So it's, in 18 months, you get your bachelor's at Le Moyne, while getting your RN (registered nurse) at St. Joe's. And just thinking about that program and more about how I felt as a nurse, I get a little bit more hands-on with patients and more interaction. So that's why I picked the nursing route versus PA.

Host Amber Smith: Did you like the 18 months? I mean, that's, that's heavy duty.

Lauren Calloway: Yeah. Yeah. So I was lucky enough to just work like an easy part-time job while I was doing that. And I still lived at home with my parents, so, that was awesome because I had a lot of extra time that I could study and put into it.

But there were so many people in my class too that had full-time jobs, families, and still did it as well. So it's a challenging program, but anybody can work hard and do it. So I enjoyed it.

Host Amber Smith: But you said from an early age you knew you were kind of attracted to the medical field. You liked science, I guess?

Yes. Yeah, I actually, I always loved science, but math was probably my favorite subject. So what was your first nursing job?

Lauren Calloway: I worked briefly in pediatric oncology at (Upstate) Golisano (Children's Hospital). They were hiring new grads, right out of nursing school, which they hadn't done in a long time. So I got to do ... well you do a transition to practice at the end of nursing school, where you get to do a certain amount of hours on a unit. So I picked pediatric oncology, and that's where I grew to love it more. So when they had the job opening, I applied for it. So I worked there for a few months. But working with kids was pretty heartbreaking. So I actually, I stopped there and went into dialysis, which I loved as well.

But then I came back to adult oncology, and that's definitely my thing.

Host Amber Smith: So when did you know for sure that you had chosen the right career?

Lauren Calloway: Honestly, probably right in nursing school. Like just all of my classmates that were in there, we were a really good like bonding team. It was a hard thing to go through together, but everybody had each other's back, so it gave a goodstanding of having support. So I felt that basically my whole nursing career now of having a good support of coworkers. So it just kind of trickled. And then of course, the patients, I just, I love them. They're so nice to work with.

Host Amber Smith: You're listening to Upstate's "HealthLink on Air" with your host, Amber Smith. I am talking with Lauren Calloway, who is an oncology nurse at the Upstate Cancer Center and who won the first annual Beth Baldwin Oncology Nurse Award.

So what do you think pulled you toward oncology nursing?

Lauren Calloway: My grandma, she had breast cancer. I think probably the first time she had it, I was in middle school. And then she had it a couple more times after after that. So I kind of got introduced to that a little bit. And then my grandma, she actually used to go to a private practice, so she was telling me about it there, and I was like, oh, that actually sounds like it could be a good job, too, especially like with adults.

So she really helped guide me in this direction just with her history and motivation.

Host Amber Smith: So what is your day typically like?

Lauren Calloway: So at the Upstate Cancer Center, I typically work in infusion. There are some other specialty roles you can work in as well, but I'm mainly working in infusion.

So, you come in, you get assigned two or three rooms per nurse. And then there's an assigner that assigns different patients to the different nurses. And there's like a whole strategy of how that works. But, you start your one patient. You draw labs, you assess them. It's nice you only have two or three at a time because you really can spend the extra time you need with the patient. Everybody needs somebody to talk to, and you need to give them your undivided attention.

It's a tough thing to walk through the door. So I enjoy that part too. We hang (set up intravenous infusions of) chemo, we hang supportive therapy like hydration, electrolytes, iron infusions, blood. So we do a lot of different things here, too. And I love doing all of it.

Host Amber Smith: Is it hard to stay upbeat when you're working with patients that are so ill?

Lauren Calloway: No, I'm a pretty positive person. And I like to leave everything at the door and, again, give my undivided attention and like good vibes and good energy to patients. And you know, some patients are having harder days than others.

And I mean, you got to do what you got to do to make them the most comfortable. Like, you know, you might not be able to make somebody as happy when they're not having a good day, but just to make them more comfortable and just know you're there for them is important. So I do my best toput on a good face and be the good support that patients need.

Host Amber Smith: Do you have some general advice for people who learn they have cancer in terms of getting through the treatment?

Lauren Calloway: Definitely support. Whether it's family, friends, us at the cancer center, or like support groups. I know a lot of people like to do that. I feel like support is a really big thing that people need. Even if they don't think they need it at the time, I think it's a good thing to have eventually when they're ready for it.

Host Amber Smith: Is this a specialty that you would recommend to other nurses?

Lauren Calloway: Yeah, 100 %. And,when nurses get hired here too, they do a really good job at picking the most compassionate people to work here because everybody that works here is just, they're so kind and for the patient, and we all love each other here, so it's a really, really good place to work at.

Host Amber Smith: That's good to know. Well, thank you for making time for telling us about this.

Lauren Calloway: Yeah, no problem.

Host Amber Smith: My guest has been Lauren Calloway, an oncology nurse from the Upstate Cancer Center, and the winner of the first annual Beth Baldwin Oncology Nurse Award. I'm Amber Smith for Upstate's "HealthLink on Air."

Learn about the profession of cardiovascular perfusion -- next, on Upstate's "HealthLink on Air." From Upstate Medical University in Syracuse, New York, I'm Amber Smith. This is "HealthLink on Air." Today we're talking about the field of cardiopulmonary perfusion with Bruce Searles. He's a certified clinical perfusionist and the director of cardiovascular perfusion in the Upstate College of Health Professions. Welcome to "HealthLink on Air," Dr. Searles.

Bruce Searles, PhD: Hi, Amber. It's great to be here. Thank you for the invitation.

Host Amber Smith: So can you describe what cardiovascular perfusion is?

Bruce Searles, PhD: Sure. Cardiovascular perfusion is the profession for the clinical perfusionist. And as such, a clinical perfusionist is somebody who is a specialist -- we're going to do a lot of word soup here this morning -- the specialist in extracorporeal technology. So we operate devices that are the most extreme life support systems. We're often involved on cardiac surgery teams, assisting the cardiac surgeon, anesthesiologists, and all the other health professionals that are in that room, the nurses, the PAs, the, the scrub techs, the respiratory therapists.

Host Amber Smith: Well, what does extracorporeal mean? You used that word.

Bruce Searles, PhD: Extracorporeal. That's a fun word, isn't it? So if you divide that up, extra is outside of, and corporeal is the body. So it indicates that we're going to use some technologies to plug into the person's cardiovascular system, and we're going to circulate their blood outside of their body and then put it across different artificial organs.

In particular, we have this thing called an oxygenator, which is like an artificial lung. And we're going to use pumps, which are essentially artificial hearts. And on occasion we'll use hemoconcentrators, which are artificial kidneys, in a sense.

So we will take the patient's blood outside their body, move them across some artificial organs to perform certain physiologic functions that the patient isn't able to perform for themselves at that moment.

Host Amber Smith: So does that allow the heart and the lungs to be still for the surgeons?

Bruce Searles, PhD: That is, for the surgical procedures in the operating room, that's one of our primary goals, is to provide a motionless and bloodless field.

If you can imagine the challenge that a cardiac surgeon has, they're going to surgically gain access and visualization of a human being's heart, and then they want to do some very delicate vascular surgery on this muscle that's jumping all over the place inside the chest. So through the magic that is cardiopulmonary bypass, and the skill set of a cardiovascular perfusionist, then we can provide the surgeon a motionless and bloodless field, we'll circulate their blood outside their body, around their heart and their lungs. And that's what cardiopulmonary bypass is.

And then we can, in cooperation with the surgeon, apply some medications to the heart, which cause the heart to stop beating. Anesthesia will turn off the ventilator. The lungs aren't breathing, the heart's not beating, and the surgeon has the heart isolated from the rest of the patient's vascular system.

Host Amber Smith: How long ago did this specialty begin?

Bruce Searles, PhD: So, in 1953, way back in 1953, on May 6th, our pioneer that we give credit to birthing the field, his name was John Gibbon, he performed the first successful cardiopulmonary bypass procedure on an 18-year-old in Jefferson Medical College in Philadelphia, Pennsylvania.

That was following 20 years of research in which he imagined it must be possible. But, it took him some time to demonstrate that it could be done.

Host Amber Smith: And is this used mostly just in heart surgery or are there other procedures that this might be needed for?

Bruce Searles, PhD: The bulk of the clinical perfusionist work usually does happen in the operating room, as a member of the cardiac surgery team.

But we do have the opportunity to work outside of the operating room with other specialists. So some days I may find myself in the catheterization laboratory, helping a cardiologist with a diagnostic cardiology procedure. Other days we'll be in the intensive care unit with some patient who has profoundly failing hearts or lungs, and we can help them with some procedures called ECMO, E-C-M-O, extracorporeal membrane oxygenation. Or maybe we would be operating a device called a VAD, a ventricular assist device, V-A-D. All of these are extracorporeal technologies. They all are different devices plugged into the patient's vascular system, circulating their blood outside their body.

Host Amber Smith: So it sounds like things have advanced since the field began.

Bruce Searles, PhD: Oh, yeah. Interestingly, in thinking about this interview, I was reviewing some history, and it occurred to me that the cases that they originally did, the very first case was an ASD (atrial septal defect) closure, 45 minutes on bypass, 23 minutes dependent on when the heart stopped, 23 minutes. Those cases today would be our absolute easiest cases. And back then they were, they were barely attainable. The mortality rate in 1953 was over 50% for these procedures. And as our technology has gotten better, the surgeons have been able to dream about their surgical skills and improve their surgical skills. And now the cases we do all day, every day, were unimaginable when the field originated. We do much, much sicker patients through more complicated surgical procedures. It's really been amazing to watch the field advance over the 30 years that I've been in it.

Host Amber Smith: What is ASD?

Bruce Searles, PhD: An ASD was a pathology, an atrial septal defect.

The very first patient had an ASD. They had communication between the two upper chambers of the heart, and technically now we look at that as a pretty simple procedure. They open up the heart, they put a couple stitches in it to stop the communication and then close the heart back up again. But back then, that was absolutely revolutionary, the idea that you could operate on the inside of a human's heart.

Host Amber Smith: This is Upstate's "HealthLink on Air" with your host, Amber Smith. I'm talking with Dr. Bruce Searles, a certified clinical perfusionist, and the director of cardiovascular perfusion in the Upstate College of Health Professions.

Now let's get into what it takes to become a cardiovascular perfusionist. So I'd like to ask you to tell us about the educational program at Upstate. What sort of students are you looking for?

Bruce Searles, PhD: At Upstate Medical University in the College of Health Professions, we have one of the nation's oldest educational programs for clinical perfusion.

We're currently offering a master's degree, and we'll have many more candidates than we have seats. So we have a competitive interview process. And who we're screening for are people who have the obvious credentials of a very good academic background, good grades in science courses and knowledge of the field.

Many candidates come to us with some clinical experience already in some other profession, nurses or respiratory therapists, or we have a lot of perfusion assistants that apply to us as well. So it's very common that you have a good GPA (grade point average), with a good science degree and you have clinical experience, though the experience is not a requirement.

So what we use the interview for, to whittle down our applicant pool, is to find people who can communicate well, their passion for the field and knowledge of the field, people who can provide and demonstrate that they are independent learners. Because there's going to be a lot of opportunities as you go through the program and the profession to learn things, and we want people who seek out those opportunities and do it because that's how they're wired on the inside, not because somebody told them, go in there and learn this thing. So we want autonomous workers, independent thinkers.

And we're also screening for a certain personality type. As you can imagine, clinical perfusion is working in a fairly stressful environment. Now, when I interviewed for this program back in 1991, I met with Jeanne Lange, the program director at the time, and she introduced the field to me, and she, probablin an an attempt to stump me during the interview, she said, "perfusion has been described as 90% boredom and 10% terror. Why would you want to be a perfusionist?"

And you know, for me and many of us, the answer to that question is embedded in the question. It's that 10% terror. Every job has a certain amount of repetition, and as you become good at it, it's not necessarily challenging anymore. So no matter what you do, you get good at it, and it becomes a little bit ordinary.

That's the 90% boredom. But it's the 10% terror, the opportunity every day we go to work that something really, really significant could happen. And I have to be ready for that. I have a very unique skill set as a clinical perfusionist. And if I'm called to use all of it all at one time, it's because somebody's trying really hard to die, and I'm going to try really hard to stop that.

Host Amber Smith: So this is a, you said, master's degree program. How many semesters is it?

Bruce Searles, PhD: Our master's program runs over about 21 months. It starts in the fall semester and runs through five semesters. So we start in September. There is a full summer semester, and it finishes around May.

Host Amber Smith: What about graduate positions? Do you have any of those?

Bruce Searles, PhD: Oh, sure. So thank you for asking. Our program is a master's degree, and we're currently accepting about 20 students per year. And while we're interviewing, we're looking for about 19 individuals who are, as we just described, very, very smart, very skilled, very dedicated.

But while we're doing that, we're also specifically looking for another unique candidate. We have one seat reserved for an international scholar. We are happy to have a program in which we can accept an internationally trained and experienced clinical perfusionist to become part of our educational cohort, just like all the other students. But given that they have experience in operating extracorporeal equipment, we can apply them as a graduate teaching assistant in our simulation laboratories. So it becomes a reciprocal arrangement, and we're helping them whether pursue their education and American credentials. And at the same time, they're helping us teach our students.

It expands the opportunities for diversity of experience and opinion for the other 19 students. And it expands the reach of our faculty, to haveour simulation curriculum delivered at a high level to all of our students. And it's great for the international candidates who sometimes have difficulty finding a pathway to get into our country and receive our education.

It would be wonderful if some of those candidates wanted to take that education and return to their countries and open schools. We're really big into promoting education in areas of the world that aren't as fortunate as us. But we recognize some of these candidates are also probably going to immigrate here and stay here for life.

Host Amber Smith: Can you walk us through what the students can expect during their training? How much of this is lecture and how much of it is hands on?

Bruce Searles, PhD: Yeah, sure. So we kind of divide it up into year one and year two. And in year one the candidates come from wherever they are. And, by the way, most of our candidates, most of our accepted students are out-of-state students because there are only 20 schools in the nation. So just about anybody that goes to perfusion school had to move to a different state to get into some school somewhere. So our candidates come from all over and come to Syracuse and they'll spend the first two and a half semesters here on campus with us.

If you were to take a day in the life of a first-year perfusion student, then it's probably 45% of the time they're in the SIM (Simulation) lab practicing their skills in a high-fidelity environment; 45% of the time they're in lecture, in traditional classrooms with lectures and presentations and tests just like you normally expect in education.

But then there's about 10 more percent of the time that they spend in clinical observation. They'll have opportunities to go to the hospital watching clinicians work in the operating room, in the cath lab, in the ICU, et cetera. So that's the first year.

And by the time they've completed the first year, then we transition to the clinical preceptorship portion of the of the education. And now the SUNY students are going to go to at least four different hospitals and practice for rotations that last about seven weeks at at a time. So we have five rotations. You have to hit four hospitals. You'll be on the road moving from hospital to hospital for about 35 weeks.

Our rotations are, potentially, spread all over the country. We have 30 clinical affiliates, from Portland, Oregon, to Portland, Maine, to Dallas, Texas, and New Orleans and North Carolina. We're really spread all over the country. And our graduates come from all over the country, and they return to all over the country after they graduate and they get their training all over the country.

Host Amber Smith: Interesting. So after graduation, are there residency requirements or exams or licensure? How does that work?

Bruce Searles, PhD: You're not quite done when you think you're done. So, you complete your education at one of those 20 schools that are accredited by the Commission for the Accreditation of Allied Health Education Programs. If you graduate from any of those programs, then you are qualified then to sit for the certification exams of the American Board of Cardiovascular Perfusion. And the ABCP offers a two-part examination process. You can't take those immediately upon graduation. They're only offered twice a year, so six months apart. So you can graduate, you can get a job, you fill out the paperwork, and you take the test the next time it's offered within six months to 12 months.

And then, if you are working in a state that requires a licensure, then all states that license perfusionists use the American Board exam as the gateway. So the plan is graduate, get a job, get certified, complete your license. Now you're finally done.

Beyond that, there's continuing education requirements for the rest of your profession, and there's actually clinical service requirements in our profession. If you're not doing clinical work, if you're not actively involved in at least 40 perfusion procedures a year, then you'll lose your certification. So, many of us who have more academic jobs, where I don't necessarily report to an operating room every day, I've got to find time to get out and get back into a hospital if I'm going to keep my certification.

Host Amber Smith: I see. Well, let's talk about the sorts of jobs that someone can expect once they're certified and and ready to work. Will they be working in a hospital?

Bruce Searles, PhD: Hospitals really are where we show up to do our, to apply our craft, if you will. Now, we're parts of teams that work in intensive care units and operating rooms, so that requires a hospital. Your employer may be that hospital, or your employer may be a contract company. There are several perfusion contract service organizations that employ sometimes just a few perfusionists. Maybe it's a small company that has one contract at one hospital, but there are several nationwide companies that have perhaps contracts with 100 hospitals and employ thousands of perfusionists.

So one way or another, you work for somebody who pays your paycheck, but you show up to a hospital to do that work. Other opportunities for perfusionists other than working in the hospital, which most do, would be if you if you have a role in a clinical contract company, then there's always opportunities to advance through administration and be in charge of administrative and operational decisions that that company has to make with equipment, getting equipment and keeping the equipment ready for clinical service and hiring and firing people, getting contracts with hospitals.

Other things that clinical perfusionists do besides operate equipment in the operating room would be to work for medical device companies that develop and sell products for perfusionists. So the LivaNovas and the Getinges and the Medtronics of the world need clinicians to advise them on product development. And then they need people who will represent those products back to clinicians. And some perfusionists go that way.

And then there's like 20 of us that have jobs like mine, or directors of schools and work for universities, and do education for students.

Host Amber Smith: What is the starting salary range?

Bruce Searles, PhD: Typically about $120,000, with tremendous variability. Obviously if you're going into a major metropolitan area, then it'll be a lot higher than that. And sometimes you find salaries that are a lot higher than that in the middle of nowhere because it's hard to attract people to the middle of nowhere. So, 120 is a safe bet. You would feel well respected if you're offered something just cracking over $100,000. But there's opportunities to make more than that.

Now, another thing to think about with a salary is that there's often a base salary. That's what I just described, 120. But to be a member of the open heart surgery team, there's a call responsibility. So you will work when scheduled and then other times, as needed. So if you're going to take call, then there's usually some remuneration for the inconvenience of promising to return to work at a moment's notice, and then maybe working for another half a day if you do get called in. So it's usually we would express the salaries as that base, plus call recall.

Host Amber Smith: Do the perfusionists have much interaction with the patient?

Bruce Searles, PhD: You can divide that up in with different levels of understanding. I need a patient, and I need to be close to them. So I work with patients very closely geographically. I'm six feet away from them. But all my patients are sedated, perhaps anesthetized. Just about all the patients are intubated (a breathing tube in their windpipe). They're not having conversations with me, and I'm not talking to them. Most of them don't even know that I'm there.

So I work closely with patients. But I don't really get to know my patients. If you're interested in a career where you get to look into your patient's eyes and see their appreciation or can be empathetic with their pain, this is totally the wrong profession. I have a human being in front of me that is very important to me, and I'm going to apply all of my skills to them, but I don't know them as a person. I know them as a fellow human being.

Host Amber Smith: It sounds like it's been a satisfying career for you though.

Bruce Searles, PhD: I do really enjoy the profession. It kind of goes back to the 10% terror part.

As an educator, I do spend a lot of time in my office working on papers, grading students' papers, and grading tests and administering a program. And some days you leave that particular part of the job and think, wow, that was a lot of paper pushing today. But I never go to the operating room and wonder if what I did was important.

You know, I had a role in a team that took a patient who was ill to a near death situation. We plugged into their circulatory system and stopped their heart and lungs. The surgical team does something, hopefully, to improve their health, and they can only do that because I can take care of the patient in the meantime. And at the end of the day, we wean them all back onto the patient's independent circulatory system and send them up for recovery.

It's extremely satisfying. It could be one of the most important days in that patient's life.

Host Amber Smith: Well, this has been very interesting speaking with you. I appreciate you making time.

Bruce Searles, PhD: Thank you for the invitation.

Host Amber Smith: My guest has been Dr. Bruce Searles. He's a certified clinical perfusionist and the director of cardiovascular perfusion in the Upstate College of Health Professions. I'm Amber Smith for Upstate's "HealthLink on Air."

Next on Upstate's "HealthLink on Air," the ethics of parents making health care decisions for their children.

From Upstate Medical University in Syracuse, New York, I'm Amber Smith. This is "HealthLink on Air."

Parents are usually the ones making health care decisions for their children, but what if a parent makes a decision that will end up harming the child? A pair of researchers explore parental reasoning and health care decision making in a paper that was published recently in the American Journal of Bioethics. Today I'm speaking with the authors. Dr. Amy Brown is an associate professor of both pediatrics and of bioethics and humanities at Upstate, and Dr. Bry Moore is an assistant professor in the department of health, humanities, and bioethics at the University of Rochester.

Welcome, both of you, to "HealthLink on Air."

Amy Brown, MD: Thank you for having us.

Bry Moore, PhD: Yeah, thank you so much. It's great to be here.

Host Amber Smith: So why is it important to understand the reasoning of a parent or a caregiver who's making decisions for a child?

Bry Moore, PhD: I think it depends on who you ask, right? I think if you ask a clinician why, a pediatrician, someone who's working with patients and families, why it's important to understand parents or caregivers reasons, they're going to give a slightly different answer to why parents might think it's important or why a clinical ethicist -- Amy and I both work as clinical ethics consultants for our hospital systems -- why we might think it's important to try and understand where parents are coming from.

Host Amber Smith: Well, what can doctors do if the parent wants something that is not in the child's best interest? Dr. Brown?

Amy Brown, MD: Yeah, so there's a lot of different pathways and it depends in part on what the decision is and what might happen if we don't do the thing that we as doctors are recommending. Because if you think about all the medical choices that are out there, there are some things that are very strongly recommended, like, "We need to do this, or your child could get seriously ill or even die," versus "We think this is a good idea, but we know that it doesn't always work," or "We know that some children where we don't give this medicine, we just observe, we know that some of them will do fine, and some of them will come back and need treatment, and so we recommend treatment, but it might also be considered reasonable to pursue one of those other options."

Sometimes the decisions are about things parents want to do that are outside the scope of Western medicine. So I can say things like, "Well, I can't recommend you do that. You use that herb or you use that treatment. I can't recommend you do that or don't do that because it's not part of what I do as a Western-trained pediatrician." But I can respect your decision to, say, go see a provider who is trained in that tradition and talk to them about the risks and benefits.

Bry Moore, PhD: Just to add to that, Amber, I think one of the reasons why it's important to understand parents' reasoning when it comes to these sorts of decisions is so that, hopefully we can avoid things like going, you know, if a parent doesn't want a recommended medical treatment, we can avoid trying to override, engaging child protective services, kind of going all the way to that level. If we can understand where they're coming from, as Amy's talking about, hopefully we can try and work with them. We can find compromises. We can kind of make sure we understand the same information, if that's possible.

One of the reasons to understand where parents are coming from to try and sort of elicit and engage with their reasons is to engage in that process that Amy's describing.

Amy Brown, MD: And the goal is to reach a shared decision that even if we can't say it's absolutely best we can say is really good enough, is going to keep this child safe and protect them from harm. And we would like to do that in as shared a way as possible with the parents where we're really all part of the same team trying to achieve the same goals.

But underlying that is the idea that if the decision that the parents, that the family, wants to make -- because it's not always the parents, sometimes it's grandparents or a guardian -- if the decision they want to make is really going to cause irreversible harm, that we need to step in and talk to the child protection system and prevent that harm from reaching the child.

Host Amber Smith: Do pediatricians risk losing the patient if the parent disagrees with the care that the doctor wants to provide?

Amy Brown, MD: Sometimes. Again, I think it depends a little bit on the decision. And as many people listening probably know, there are many pediatric practices locally and in other places that don't accept families who don't agree to vaccinate their children. They're starting from a place of saying, "You know, if you don't agree with us on this really fundamental approach to pediatric care, we don't think we're going to be able to work together. You probably need to find someone, the family probably needs to find someone, whose mindset is more like theirs." Because yeah, sometimes it's a disagreement over one thing, and the relationship can continue. And sometimes it reflects a really fundamental disagreement about, say, all of medicine and how medicine should be used and what it means to have a good life or a healthy life.

Bry Moore, PhD: Just to add to that, I think not just whether a pediatrician disagrees with parents, but how they go about communicating that disagreement and engaging the family, that is also really, really important to consider. We can disagree in a way that's still respectful and works at maintaining a relationship, right?

Or we can disagree in a way that is really destructive and won't allow for that relationship to continue. And it's going to be driven a lot by sort of parents' preferences around how comfortable they are with disagreement or engaging in that back and forth and sharing different perspectives with that pediatrician.

Host Amber Smith: This is Upstate's "HealthLink on Air" with your host, Amber Smith. I'm talking with Upstate pediatrician and bioethicist, Dr. Amy Brown and University of Rochester bioethicist Dr. Bry Moore.

In your paper, you write about a case inspired by a real ethics consult involving an 11-year-old girl. Can one of you explain the case?

Amy Brown, MD: Yeah, so this is a hypothetical case. In the paper we start with this very simple scenario, and then we do a lot of different what-ifs: What if the family said this? What if the doctor said that? But the child is an 11-year-old who was born prematurely and so had some problems with her intestines where she ended up with not enough intestinal tissue left to really help her absorb food and nutrition and grow. And so she is a candidate for a small bowel or intestinal transplant, and her doctor is interested in sending her to another center away from home, another hospital to explore those options and perhaps get that transplant.

Host Amber Smith: Is the transplant typically done to treat her condition?

Amy Brown, MD: For children with the most severe forms who don't really have any other options to be able to be fed and to grow it is an option, but it's not a sure thing. It's not a simple procedure. It has a lot of risks and side effects and requires a lot of time in the hospital. And it doesn't always work. It's not always successful for everyone.

Host Amber Smith: OK. Well, can you walk us through the variations that you included in your paper and talk about the reasons the parents might refuse a transplant in each of these variations. Dr. Moore?

Bry Moore, PhD: We cover a handful of sort of different reasons that parents may offer for refusing the transfer for evaluation for the potential intestinal transplant. And these are based on the kinds of things that we often hear from parents in ethics consults in practice,every week.

And the variations include an absolute lack of resources, so just the incredible amount of financial strain that the transfer, that moving interstate, pursuing this evaluation in a place that's not their own home could potentially place on a family like this.

We talk about sort of a relative lack of resources, so it's not necessarily that the if the family absolutely cannot afford it, but just that it would still create a lot of strain compared to, say, another family.

Social burdens of treatment, so just sort of thinking about all of the other sorts of burdens, social burdens, tensions on relationships, taking perhaps other children out of school, things like having to change jobs or maybe losing your job because you're moving interstate. So just sort of thinking about that broader social context of a move like this for a family.

We might hear families, parents say, " I don't know how to do this. Like, how is this going to impact my own circumstances, but also the rest of my family?"

Quality of life, so if we move, for example, the patient, the child in the case that we describe interstate, we're probably going to be living in the hospital, right? Like our whole life is going to be about this evaluation, and we're not going to, perhaps, know anyone there or have any social support. So what's our quality of life, both for the patient but also the child and family together, going to be like if we do make this move?

Mistrust in the health care system. This is one that comes up not infrequently where we might hear from a family that perhaps they're refusing the transfer for evaluation because they don't trust the information that we're giving them or the recommendation that we're giving them. Or they've had really negative experiences in the health care system.

And last but not least, sometimes we hear faith-based reasons from families, right? So we might hear that perhaps they're trusting that God will cure their child, or they're hoping and praying for a miracle. And that this is why they don't feel at this time that they want to go ahead with a transfer and evaluation or the recommended medical plan.

Host Amber Smith: So, in all of those circumstances, what is the ethical conclusion? Dr. Brown?

Amy Brown, MD: This is something we begin to lay out in this paper. And we are in the process of doing some empirical studies where we talk to both physicians, doctors, clinical ethics consultants, and hopefully eventually other people in health care about how they incorporate these reasons into what they think should be done.

And when we say what they think should be done, the decision on the table is often, do we accept the parent's decision as it is? Do we continue trying to discuss and compromise, and what does an acceptable compromise look like? Or do we say, no, this is unacceptable, this is harmful in a way that really becomes neglectful or abusive, and we need to talk to the child protective system.

Those are the pathways that are open to the health care team when they're thinking about these decisions. Does that make sense and help clarify?

Host Amber Smith: Yeah. So it does sound like it might be different depending on their reasoning, but that there's not one answer that's right for this particular 11-year-old girl.

Amy Brown, MD: The reasons can tell us things like if we were to go down the pathway of thinking this is just too harmful, this child is going to die without this treatment, the reasons help us think about, well, what are the harms of trying to intervene, bringing the child protective system into this family's life?

If, for instance, we know there's a lot of potential harms in one of the scenarios to the other siblings and to the parents that this is going to be really disruptive to their family life and maybe sort of result in their other children not having great outcomes or not being able to access the resources they need, then we might say, well, OK, is it really right to try to force the family to do something that would help one child but hurt the others?

That's the way in which we can think, and the reasons can also help us to think about what the compromises might look like. If a family is saying, you know, our faith is really important to us, and we're not sure our faith allows what you want us to do, then we might be able to say, well, is there someone in your faith community who can come and be part of this conversation? And maybe they can help us figure out which parts of treatment are acceptable and which parts are not, and maybe there's a way to move forward that gets your child what they need while also honoring your beliefs.

Bry Moore, PhD: And to add to that, Amber, thinking about how we're engaging with parents' reasons in practice. I mean, I think because this is one of our conclusions in the paper, it can draw our attention to cognitive and social biases that are at play in this space. So, are we treating different families reasons differently? Are we treating different kinds of reasons differently based on our own or perhaps our profession's biases toward members of that group or certain types of reasons. And we think that's really important ethically, right?

Host Amber Smith: Well, I know your research did not get into the reasons offered by a child, but when does a child get to start making some of their own health care decisions. At at age 11, are they old enough to understand and say yes or no?

Amy Brown, MD: Such a good question. You want to take it? You can go ahead, Bry.

Bry Moore, PhD: So I'm giving a classically ethics answer. It depends, right?

So there is sort of this space where we recognize that children are starting to be able to engage in decisions in what we often call developmentally appropriate ways. Historically we haven't included children. They don't have a voice in their own health care decisions very often, or in a very strong way.

We talk about the spectrum from informed consent, where someone is viewed as sort of a fully capacitated competent adult who can receive information, provide information, and make decisions in, in this way about their own health care. We don't typically allow children to do that, or even adolescents. And at the other end of the spectrum is sort of just dissent. So if the child is really saying no, what do we do with that? And in the middle there's sort of a range of things, right, where they might be saying yes, but they might not have full information or be able to fully comprehend that information.

So it's a big continuum, and different kids, even of the same age, might fall at different places in terms of both their ability, but also desire or like willingness to engage in decisions. Their family's approach and sort of social contact. Different families want to participate in decision making and have the child involved to different degrees.

So it's really, really complicated. There are certain areas of treatment where children are allowed to make their own health care decisions. Those include for sort of reproductive care or sexual health, mental health or substance use treatment. Amy am I forgetting any? I think those are the main areas, usually, that most states allow.

Amy Brown, MD: Sexual health that's not reproductive, like treatment of STDs (sexually transmitted diseases).

Bry Moore, PhD: Yeah. So those are areas where children do have the ability to make decisions and seek care without the involvement of a parent or caregiver to make those decisions for them. So, yeah, it's complicated.

Host Amber Smith: It sounds like their reasoning matters though, too.

Bry Moore, PhD: Absolutely. I think it can matter tremendously.

Amy Brown, MD: Yeah, it's a really interesting thing because we often use reasons as part of an assessment of someone's decisional capacity. So we assume adults have decisional capacity. Some children may, especially older teens, may also have adultlike decisional capacity. But part of assessing that is, why do they want to do what they want to do? Can they explain to you what will happen if they do what they want versus what you're suggesting? If those are different things, and be able to give sort of a coherent rationale for why they want to do that.

And yet in in pediatrics, it's not clear that those reasons change doctor's assessments of whether or not something is permissible.

Host Amber Smith: Well, this is fascinating, and I appreciate both of you making time for this interview. Thank you.

Bry Moore, PhD: Thank you for the opportunity.

Host Amber Smith: My guests have been Dr. Amy Brown, an associate professor of both pediatrics and of bioethics and humanities at Upstate. And Dr. Bry Moore, an assistant professor in the department of health, humanities, and bioethics at the University of Rochester.

I'm Amber Smith for Upstate's "HealthLink on Air."

Here's some expert advice from Dr. Hesham Masoud from Upstate Medical University. What is the most important stroke warning symptom?

Hesham Masoud, MD: The biggest symptom is really any manifestation where suddenly you can't do something, and that can be the ability to move your arm, face or leg, express yourself, see, or even suddenly not have balance, or suddenly have inability to communicate your thoughts. I think suddenly not being able to do something is a symptom that warrants evaluation.

Host Amber Smith: You've been listening to stroke neurologist Dr. Hesham Masoud from Upstate Medical University.

And now, Deirdre Neilen, editor of Upstate Medical University's literary and visual arts journal, The Healing Muse, with this week's selection.

Deirdre Neilen, PhD: Trust is the cornerstone of good medicine. What happens when we find ourselves in need of medical aid far from home, and we are unable to speak the language? Gloria Heffernan is a writer and poet from Central New York. She offers us one possible solution in her poem "E. R. Takayama, Japan."

I am an infant once again with fists

balled up in frustration because

I have no words to express my needs.

No tools to take care of myself.

Here in this distant country

where I am a stranger,

where the language is

as alien as I am,

the doctor looks at me

with puzzled eyes

and even my racking cough

sounds foreign to his ears.

My voice croaks from laryngitis,

but that is not why I cannot speak.

I am my words

and my words mean nothing here.

And then the patient woman who,

until now, has simply been

my tour guide, becomes my voice,

explains my situation, guides me

on a different journey from the one

described in the glossy catalogue.

I listen to the rapid utterances

flying back and forth between her

and the doctor who looks at me

while listening to her.

They swim on the rising waves

of a language I will never understand,

and I do the only thing I can do.

I trust them.

Host Amber Smith: This has been Upstate's "HealthLink on Air," brought to you each week by Upstate Medical University in Syracuse, New York.

If you missed any of today's show, or for more information on a variety of health, science and medical topics, visit our website at healthlinkonair.org.

Upstate's "HealthLink On Air" is produced by Jim Howe with sound engineering by Bill Broeckel and graphic design by Dan Cameron.

This is your host, Amber Smith, thanking you for listening.