Laura F. Fryan, Partner, Brouse McDowell, speaks to Nicole Cifra and Taylor Starr, physicians at the Golisano Children’s Hospital at the University of Rochester Medical Center, about the intersection of the law and the practice of medicine when it comes to treating patients with eating disorders. They discuss legal issues related to determining inpatient versus outpatient treatment, guardianships for adults, the concept of “treating over objection,” and treating children and adolescents.
Dr. Cifra, MD, MPH is an Adolescent Medicine Fellow at the University of Rochester Medical Center, and Dr. Starr, DO, MPH is an assistant professor of pediatrics and medical director of Golisano’s Eating Disorder Program.
Read Laura’s in-depth interview with Drs. Cifra and Starr in this May 2021 PG Briefing. From the Children’s Health Affinity Group of AHLA’s Academic Medical Centers and Teaching Hospitals Practice Group.
To learn more about AHLA and the educational resources available to the health law community, visit americanhealthlaw.org.
This episode of A H L A speaking of health law is brought to you by A H L A members and donors like you. For more information, visit american health law.org.Speaker 2:
Hello everyone. I'm Laura Fry, a partner at the law firm of Brown McDowell and the Vice-Chair of Publications for the Children's Health Affinity Group. Here with me today is Nicole SRA and Taylor Starr. They are two physicians from Goli Sano Children's Hospital at the University of Rochester Medical Center. Dr. SRA is an adolescent medicine fellow there, and Dr. Starr is an associate professor in the division of Adolescent Medicine and the medical Director of the Child and Adolescent Eating Disorder program at Golisano Children's Hospital. Dr. Sifa and I both went to Gro City College, but we didn't actually connect until after college when we became professionals in the healthcare industry. Dr. Si r and I had a conversation over email about experiences with guardianships for adults struggling with an eating disorder. I was intrigued by the intersection of the law and the practice of medicine in this situation, and that led to a discussion between the three of us about Dr. Sif R and Dr. Starr's. Fascinating and amazing work with children, adolescents and young adults affected by eating disorders and their parents and guardians. So on this podcast today, I'm so excited to introduce these two physicians to you and share their story. So to kick things off, um, Dr. Sar and Dr. Seifer, why don't you tell everyone briefly about the eating disorder program at your hospital and what makes it unique?Speaker 3:
Sure. Uh, thank you Laura for that introduction. So, our and adolescent eating disorder program, uh, was established almost 40 years ago, uh, by a mentor of both of ours, Dr. Rich Krek, and it is a quite robust program con, um, that includes both, uh, outpatient practice. Uh, it sits in the division of adolescent medicine. So we're, uh, people from, uh, various disciplines and physicians from various backgrounds. Some of us are pediatricians. Uh, some of us are family medicine trained, and some of us are internal medicine trained all with extra expertise in taking care of adolescents, which is that, uh, amazing time during, uh, growth and development. And so our program sits in adolescent medicine in the Department of Pediatrics. We have a large catchment area of 30 counties in Western New York. And our outpatient practice, um, is quite robust. We collaborate with our community partner, uh, the Healing Connection, which is a not-for-profit agency, uh, that provides psychological care for patients affected with eating disorders. And our program in adolescent medicine provides comprehensive medical care for patients and families affected by eating disorders. We also, as part of our child and adolescent eating disorder program, have an inpatient medical program, uh, that is a medical admission for children, adolescents who, uh, have medical instability from eating disorder behaviors. And our program, um, uh, is multidisciplinary. So when admitted to the hospital children and their families have a large team of caring for them, they spend, uh, 10 to 17 days and sometimes longer in the hospital, um, focusing on relearning how to nourish their bodies, um, uh, medical stabilization all by nutritional rehabilitation. And families are taught how to support their children in, in this recovery period and, uh, transition back out to the community to various levels of care, um, after the hard work they've done in the hospital. And, um, our program is unique for several reasons. Um, one, as I mentioned, the medical providers are coming from, uh, across different training, um, whether they come from a pediatric background, family medicine background or adult medicine background. Um, all have specialized training in adolescent medicine and further subspecialty training and taking care of patients affected by eating disorders. Another, um, unique part of our program is we have over the past five years or so, partnered with the adult side of the medic of medicine here at the University of Rochester to fill a gap that existed for patients who, um, need medical admissions, um, secondary to medical instability from a eating disorder, but are over 18. Um, there was really not, um, a medical team to, uh, take care of that cohort of patients. So we have partnered with them and, um, are able to, um, admit patients who are over 18 to the adult side of the hospital to help those patients, um, start to, um, reclaim their life and, and start recovery. And so, um, we're, we're proud of the, um, the breath of care that we're able to provide, uh, to, to children, adolescents, and young adults who are affected by eating disorders. Drs gives you recovery. I forgot to mention, I think one of the things that I think is most unique is that we're able to impact the train of a lot of young doctors. And that's one of the reasons that I decided to come to University of Rochester for my training. Um, we interact with people in the family medicine, trauma medicine and pediatrics residency programs. And often those residents are getting quite a bit of experience in care for eating disorders more than most of their colleagues across the country. And I think that looking at the subspecialty care that those providers offer when they graduate as well as in general pediatrics or medicine, it's really remarkable and really need to be a part of their education in this regard.Speaker 2:
That's very interesting. Now, one thing, going back to one thing that you mentioned, what, what is the percentage of patients that you treat in an outpatient setting versus an inpatient setting, and what kind of factors affect whether someone has to be treated in the inpatient setting versus just handling their case in the outpatient setting?Speaker 3:
So it's a little hard to kind of put a number on it. I'll say that our outpatient services are quite robust and a very small percentage of people with eating disorders need to be treated in the inpatient medical hospital. While, well, sometimes there are guidelines for admission to the medical hospital for people with malnutrition and eating disorders. Um, it's really hard to kind of put a percentage or heart and fast rules on that. Oftentimes if individuals have a profoundly low heart rate or low blood pressure or, or at risk of Refeeding syndrome, um, due to their degree of malnutrition, that goes into our algorithm and kind of, um, determining to admit them to the hospital or to offer mission to them.Speaker 2:
Okay. Interesting. So it sounds like, sounds like you have to rely a lot on your training experience when you're treating these patients, but it sounds like you guys have quite a great program with lots of people to rely on. Now, what if, what interactions have you had with the court system on when you're dealing with adults? So patients who are over the age of majority, what kind of legal issues have you encountered with those patients?Speaker 3:
So I think in our practice, most of our interaction with the legal system is discussing issues of patient care with our counselors in house. I think that, um, it's been pretty rare for us to be a part of guardianship proceedings just cause it's so difficult to get to that point. And I think one of the issues that we see is that eating disorders are brain-based illnesses, and so individuals can appear very competent in other areas of their lives and it's quite difficult to, um, meet the threshold of treatment over objection and legal guardianship. And I think that this our area of opportunity for growth in our legal system as well as our medical legal partnerships. I would agree. Um, Nicole, um, I think where, um, specific situations where that comes up is if we're evaluating a patient, um, in the office in the outpatient setting and, uh, our medical recommendation, for example might be medical admission to the hospital. Um, and, um, if that patient is 18 or older, um, and they are unable for some reason to follow a recommendation, that is often a situation where a family, uh, really struggles to, um, help their adult child, um, you know, follow those medical recommendations. Or for example, um, they also might, might be able to bring themselves into the hospital and then, um, once challenged with the medical care that they need to nourish their body and their brain, um, their, they're unable to do that and, and, um, basically are, um, refusing, um, nutrition because they're unable to to nourish their body. Um, and comes to a place where we have an young adult who is needing lifesaving uh, nutrition, um, and um, really in a place where, where we are not sure that or we don't think that they can make, um, an informed decision because of how manner their brain is and by definition what the illness, um, sort causes their brain to think about or alters their, um, not processes. And so that's a situation where, um, we, and also families are in a really difficult position where their adult child, um, may be in the medical hospital, but then not able to get the care that they need, um, because they are making the decision, um, with their malnourished brain that's affected by a eating disorder to, um, not follow through with recommendations. So really unable to do that. And so then moving to the next step of the guardianship that the Dr. Step was talking about, um, is quite challenging. Personally, I think in the past 10 years I've had, um, two, uh, patients and their, uh, their families, uh, where the families, um, uh, decided to try to, um, get guardianship, um, and seek an attorney and, uh, secure the funds to, to pay for that. And neither of those examples actually went to court for different reasons. Uh, mainly, uh, from what I know the family was sharing that, uh, the attorney, um, while willing to try to help, um, had no information that had brought to court, um, the family was going to be able to get guardianship mainly for the, the, the reason that Dr. Siper talked about where, um, around all other topics those two individuals was, would sound quite competent. And unless the person or the judge and the, the rest of the people on the legal side of things had more education around how an immune sort of function affected, affected a brain and how malnutrition affects the brain, um, they really wouldn't have the information they needed to really, um, be able to make an informed, um, decision around things. So that's the furthest I personally have seen things go.Speaker 2:
Yeah, and that's, that's one of the things that intrigues me about this conversation so much is, like I said, that intersection of the law and practicing medicine. Um, you know, it sounds like there really is, there's a big need for education and there's a gap that we need to fill specifically with regard to, to eating disorders and, and educating those, um, in the legal system, you know, with all of the information that, you know, what are, what are some of the, the programs that you have, um, where you interact with the community, um, beyond, you know, just training physicians at your hospital.Speaker 3:
So we do a lot of education in the community and usually that all take place in schools for our primary care colleagues in the community, as well as, um, other kind of outreach activities and awareness activities through the Western New York Comprehensive Care Center for Eating Disorders. And specifically, there aren't any programs with the legal system, but we try to kind of get the information out in the community and expand our reach just to raise that awareness, especially given that eating disorders are best treated early and that can really impact outcomes. So the earlier it's identified, whether it be by someone's pediatrician, someone's teacher, someone's parent, that'll improve the prognosis for that patient. And that's why we, we are really, we see it as advocacy to kind of get that information out to those thatSpeaker 2:
Definitely. Now tell me, tell us more about this concept of treating over. Objection,Speaker 3:
Lord, that's a big one. Um, if we're, if we're talking about a, um, patient who is 18 or over in the medical side of the hospital, um, where the bed is in a medical bed, not a, um, office of, of psychiatric bed. So, um, that's governed by the office of mental health. Um, in the medical world, if you are able to, as you know, um, make an informed decision, um, you make all decisions about your medical care. Um, and often you will have someone who's 18 or over in the medical setting, um, their thoughts and behaviors are driven by an illness called a eating disorder, um, that even sort of causes thoughts and causes the person to engage in behaviors that generally cause them to change, uh, what they're taking in, like how much nutrition they're taking in and they're getting rid of, and they, um, as a result of malnutrition. And part of that malnutrition is a non knowledge brain, which also impacts, um, their ability to think and process. And so, um, if you have a person like that who's, um, trying to get medical care, the medical care is offered, um, by their team, um, basically, um, if they can technically make an informed decision, they can then, um, choose to theoretically follow recommendations or not. And typically the, um, treatment that we're recommending is nutrition and by definition that you need disorder causes your brain to say you should not have that nutrition. Um, and so they basically, um, appear to be refusing to follow recommendations or choosing not to follow recommendations. I conceptualize it as they're unable to follow the recommendations because their brain is affected by illness that affects their thinking about need, um, as well as the malnutrition that that comes from that. And, um, on the medical unit, you cannot treat over objection unless there is what's defined as imminent risk. And Dr. Sippa jumping here with other information and the trouble with determining imminent risk, um, is that there's not concrete data to say within 24 hours or 48 hours if this person chooses to either leave this hospital or not follow these recommendations that they could die. Um, and that imminent risk is, is like a certain timeframe. And so basically generally people can leave or, um, basically leave the hospital. And so treating over objection, where where this comes into play is where we think someone needs to stay in the hospital and we think this person needs what we're recommending and to be able to make sure they get what we're recommending, which is generally nutritional rehabilitation or staying in the hospital for continuing care. We would have to do an evaluation to say whether that person, um, uh, has capacity to make that decision. And it's, um, a divided world as to, um, understanding the illness and how it affects the person's brain. Um, so it's really hard to treat over objection on a medical unit, um, that is not a psychiatric bed. So I'm just gonna puzzle. There's a lot of information there. Um, Nicole, what else would you add? I think something that's interesting to talk about is when we're talking to patients, we often, um, often our patient's role endorse having what they call a healthy voice and what they call an eating disorder voice. And their eating disorder voice is really that psychopathology that's, that's the disease that's causing them to have what many would consider delusional thoughts that lead to these behaviors. And then their healthy voice, which has clarity and, and more, you know, believe their treatment team kind of knows what they need to get to get better. And it's interesting when we talk to patients, cause sometimes they, they say when they're, when they're healthy voice in quotes is, is talking, I know I really need this treatment, but I know that if you give me the decision, my eating disorder isn't gonna let me make that decision. And that can be really tricky. Um, in terms of medically and legally and in some cases when, when patients say that we try to not give their eating disorder that option in terms of presenting them with the lifesaving nutrition and um, and really capitalizing on that healthy voice rather than giving that you need to order a chance to refuse. Cause in our eyes it's a part of the disease process and yeah, that's such a great point. And, and using that information, the therapeutic stance we often use for patients is making, making statements and not asking questions. It's based on what Dr. Sapo is saying, it's almost too much of a burden, um, to say, do you want this nutrition? Oh, it's time for your breakfast, which is your medicine. Do you want this now the way we would with an adult and you know, who would say, oh, this is your nausea medicine. Do you want this now? Um, so instead we um, therapeutic stances to make statements, um, so they can sort of surrender to the care versus having to ally make a decision against this really strong illness that's driving their thinking. And, um, no, they don't want their breakfast, they don't want their nutrition. At the same time their healthy brain may want to get better. And a supportive way of providing care is to create an environment and a treat a treatment, um, structure that allows them to accept help without having to necessarily, um, relationally make decisions, um, as much. Um, certainly could they, could we make statements and they say no? Yes. And that's where we get into that position where we're often, um, you know, providing them with their solid nutrition, they're unable to complete that we, um, provide them with liquid nutrition. If they're unable to complete that, then we place an MG tube, which helps them passively get the nutrition, uh, through a tube that goes in their nose to their stomach, um, which is life saving treatment. Um, at the same time, if we ask them if they wanted any of that, the answer is no. So you don't ask that question and just make statements. Um, and that's a therapeutic stance that sometimes helps people who are, um, as entrenched, um, in their, as we're talking about. Um, but they're, the sticky situation we get in is when we take that stance and that that person's brain's not able to even allow us to help them. And um, even though, like I said, we can't always say that within 48 hours or 24 hours of whatever it's, or 72 hours that we could say with confidence that that person would die if they left the hospital or, or refuse this care. We know the trajectory of the illness, we're taking care of hundreds and thousands of patients and we know that if they don't get this and we don't stop these behaviors and we don't stabilize them, the illness would not go away. They will get worse and they will die. We just can't say when they're going to die. And so the notion of treating of our objection and is something that we're, we're becoming, you know, to a situation where, um, we're we're unable to to help them cause of, um, of the lack of, uh, I guess agreement and understand like we're not all, not every single professional understands the illness to the degree that we do. Um, and many, right? A lot of these, you know, in terms of treating over objection, it's related to, to protect many patients from, um, being treated over objection for other things in the past where it was, you know, a violation, et cetera. Um, and it seems that sometimes some of those things to protect patients are, are getting in the way of see helping people, um, from dying from this illness. And, and we should say that, um, well we conceptualize these illnesses as illnesses of brain development. Cause they generally, um, start in adolescence at this vital time, um, of both in development, um, if not treated aggressively. Um, they will, um, not get better. And, um, those patients move into adulthood are not sick. It's, it's really, really vital to interrupt all behaviors. Um, cause those behaviors will continue to persist. Um, and I think it's hard too because sometimes in society even we think of eating disorders like as a phase mm-hmm.<affirmative> and really based on our, our clinical experience, that's so not the case. And I think sometimes even, um, in the field of medicine and, and outside that bias and misperception gets in the way and, um, people aren't seeing the trajectory that we are seeing when we see patients in clinic day and and day out. And that experience really informs how we deal with these situations and what we do to try to help our patients and to build on that, our patients later can tell us, and this is sprinkled in the literature, I recall being in the hospital and I couldn't think straight. So when their brain was malnourished and they were sick in the hospital later, once they're nourished, they can recall that their thinking was not their thinking. They can label it as, as Dr Supper says, with their eating disorder. They lacked insight and they almost laugh at how, um, how disorganized their thinking was and how for these brilliant, brilliant people, how they really could not<inaudible>. Um, and to a point when you have the strong illness and you have a mal bring, you are not able to make those decisions and it comes to light. Um, and um, it's a really difficult position for, for patients and their, their families, um, of these adult, adult children that you know, and as providers as well. But families really suffer seeing their adult children not able to make a decision to put their health first and are living in fear of their adult child dying, which is very real because these illnesses have the highest mortality rateable psychiatric illness.Speaker 2:
Wow, that's very eye-opening. Now switching gears over to, to treating children in, what legal issues have you encountered with parents, um, consenting to treat? What kind of legal issues have you encountered when you're treating children?Speaker 3:
Yeah, so I think that's, um, that's definitely a different scenario and in some ways it's a little less complicated. Um, parents can make medical decisions for their children and oftentimes, um, there's agreement if we make a recommendation, um, you know, when the parent is on board, say it's for a hospital admission and we can really partner with that family, um, and do education and hear from their perspective as the expert in their child. Um, sometimes where it can get tricky is, say we recommend for admission and a parent disagrees with that and wants to give the, give their child a chance to improve at home, but we don't think that the child is in at imminent risk of, of death there is at, um, you know, risk of any poor outcome. Then oftentimes we'll arrange close follow up, we'll remain in contact with the family. And in our experience, things are, are pretty difficult to turn around at home if we're recommending admission to the hospital. And sometimes families need to, to see that before coming around to the level of care that they need. But in any case, we, um, we try to kind of partner with families in those decisions. We always say that we reg make recommendations, families make decisions about what's best for their child and we try to kind of walk them through and be there for them no matter what stage they're in. I think sometimes where it can get tricky, which is more a rarity, I would say is if a parent is declining lifesaving treatment for their child, and in that case that's when we would, you know, in the spirit of safety, uh, pull in other supports to, um, help families make the decisions that are, is best for their child. Um, and again, that's a, that's quite rare, um, in, in terms of just like the, the frequency that we have to do that. But sometimes we'll have to, um, engage with child protective services if we're really concerned that there's, um, the child is at risk of, of a poor outcome.Speaker 2:
That's interesting. Seems like, seems like you guys really encounter quite a, a wide breadth of issues with, with the amount of patients that you're treating. You know, I think what would be nice for our listeners to hear while we're talking about this intersection between legal issues and the practice of medicine is from you guys, if you could change something about the law or the legal system that would help you treat eating disorders better, what would that be?Speaker 3:
I think for me, the biggest thing would be education. And I think that eating disorders are incredibly unique. They're incredibly challenging, um, because the symptoms are both psychological, which causes medical concerns. And so I think that sometimes kind of having both of those issues at hand makes it difficult for the medical community as well as the legal community to recognize the risk and to collaborate to, to come up with solutions. So I think that really in terms of the legal system, I think a better understanding about these illnesses being brain-based diseases, they're not choices, they're not people being difficult, they're going through a phase as well as, um, the the level of mortality that comes with the illnesses. And I think that in terms of of education, that would be really important. It would really go a long way. I would agree. And I think, um, this may be low policy and I, I mean my pie in the sky idealism, um, would be that it would be law that all patients of all ages, um, affected by any eating disorder have comprehensive healthcare coverage, cover all levels of care, um, across all disciplines. So not only the medical piece, but the, the, the piece, um, that involves psychological therapy, um, having their registered dietician covered by their insurance, um, and all people having equal access to comprehensive care that they need and deserve. Um, as well as the education piece that, that Nicole talked about. And I think there are different parts of our state and across the country, but I know different parts of our state, the court system is just set up a little bit differently than, for example, we are in western York. And so just, um, I think that education piece is, is harder because I think there are more judges than just how, like, how it's set up. It's um, there's not like a cohort that you could educate, um, and that, you know, patients in Norwegian, for example, um, in their families would work within, um, a well educated system. It's, it's just set up differently. So I think, um, the education would be more challenging. Um,Speaker 2:
Yeah, that's, that's interesting. I hadn't really, you know, with what you just said, Dr. Star, I hadn't really thought about it that way because, you know, in the court system we have specific, um, you know, we have specific sections of law, you know, that, that judges practice in, right? So a lot of times you'll have, you know, a probate judge and then you have, you know, family court and then you have general division judges and there's, there's not really any type of judge that I am aware of or, you know, area that's set up in our legal system, um, for judges that specifically are dealing with medical issues even in general, let alone, um, you know, hearing cases about, you know, guardianships for eating disorders or other issues that come up. So that's kind of an interesting concept. But I do loved, I loved hearing your answers to that last question because I definitely think that it really helps, I think for me in the legal profession as a healthcare attorney to hear from physicians like you who are the boots on the ground. Um, because I think a lot of times there is, there is a disconnect between what the law says and then how you guys actually practice medicine. So I love exploring that and seeing how, you know, if there are ways where we can better make the connection between the law and the practice of medicine. So thank you two for sharing with us today. Everyone. I hope that you enjoyed this podcast with Dr. Cfra and Dr. Star. Um, again, they're from the University of Rochester Medical Center, the Golisano Children's Hospital, and we are so happy to have them on here to explore these concepts and tough issues that are out there, um, for them practicing and the intersection with the legal field. So thank you to again, for being here and I'll conclude our discussion today. Thanks Laura. Peter,Speaker 1:
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