A Question of Ethics: Catholic Bioethics for the Pediatric Clinician

Dr. Kade Goepferd: This is Talking Pediatrics, a clinical podcast by Children’s Minnesota, home to the Kid Experts, where the complex is our every day. Each episode, we bring you intriguing stories and relevant pediatric health care information as we partner with you in the care of your patients. Our guests, data, ideas and practical tips will surprise, challenge, and perhaps change, how you care for kids.

Welcome to Talking Pediatrics. I’m your host, Dr. Kade Goepferd. Today’s segment, a Question of Ethics recognizes that pediatric clinicians do ethics every day. And our guest host, Dr. Ian Wolfe, director of ethics, offers helpful guidance for pediatric clinicians navigating those everyday ethical issues.

Dr. Ian Wolfe: Welcome to a Question of Ethics. I’m your host Dr. Ian Wolfe, director of ethics here at Children’s Minnesota, and I am happy to welcome today Mary Homan. Mary is a bioethicist with a master’s in systematic theology, a master’s in Catholic health care ethics, and has been a practicing bioethicist in both Catholic and secular systems for 15 years. Welcome, Mary.

Mary Homan: Hey, thank you so much, Ian, for having me.

Dr. Ian Wolfe: In pediatric ethics, we meet families from various different backgrounds. In culture, theology, spirituality, all these things play into how parents approach medical decision making for their children. And for clinicians, we approach it from the medical perspective and the goal of pediatrics and shared decision making is to come together with both the family and the medical team to decide what the best approach forward is. And so it’s really helpful, I think, to have more understanding about some of the ways that spirituality informs parental ethics. So Mary, I thought it’d be interesting, and I’m a big lover of Catholic ethics, and Catholicism has a long history actually of bioethical discourse. And so I think there’s a couple of different things. One, there’s what does the Catholic church say in what is some of the Catholic bioethics discourse? And then the other thing is how families might take from that and how that might inform their decision making. Although as we know, a lot of people don’t really know how it informs their medical decision making until they’re in that place.

Mary Homan: You’re right, a lot of what we think about in the Catholic social and the moral tradition, so it’s both, right, the social tradition. What do you think about the preferential option for the poor? How do we understand the dignity of the person as well as the moral tradition, is more than the thou shall not. And so I think a lot of times what we see in either popular media or in quote unquote culture wars is not a true indication of sort of the whole of what influences how a parent might respond, especially in an adverse situation. So I am a mom and I’ve been a licensed foster parent. I’m an adoptive parent. I’ve worked in pediatric ethics and I’ve been a practicing Catholic. I’m a cradle Catholic, and I think that I’ve had the luxury in some ways of studying really intensely what it is that our church teaches. And I did that in a way because I wanted to help other laypeople understand and be able to say, oh gosh, that’s really what the church says. Because a lot of times the only information that folks get is what they have from their Sunday obligation of going to Mass. And for the most part, right this past Sunday was about the presentation of the Lord. So they probably told these stories about Jesus being presented at the temple and that Simeon has a vision and that was it. And so then what does that mean today? What does that represent today? What did it mean for Jesus to have been presented 40 days? Right? It was the fact that he made it alive, that he lived. So the readings were actually a testament about how Jesus survived the earliest part of infant mortality. And we don’t think about that in that way. We think, oh, that was a story and that was the beginning of who Jesus was.

Then all that we know is somewhat limited, and that’s why we rely on really good experts, those of us who are working in the field, those of us who are working in our parishes and trying to make that known. But it’s hard when the only message sometime is what does it mean to be pro-life? And so it’s distilled down to I choose to, maybe I choose to carry a pregnancy that has a lethal fetal anomaly or maybe I choose to carry when the diagnosis of Down syndrome is on the horizon. And that seems about where our understanding of what it means to be Catholic and in decision making for parents in the pediatric setting seems to start and end when really all of the conversation and the way that Catholic health care ethics has influenced is with regards to non-beneficial treatment, with regards to consent. And so our understanding, and this is a totally shameless plug, so I’m not even going to apologize, but my colleagues, Michael McCarthy and Michael Rozier and I, we wrote this paper that was called There’s No Harm in Talking. And it was about how a Christian bioethic with this anthropology that’s rooted in a really Catholic sense is actually accessible to so many other kinds of decision making because it’s the idea of what are some of those universals? So if you have people who are listening to this podcast, I really recommend reading our article, please read all the commentaries because we got great commentaries from other religious traditions because I think that that helps shape them. This push against what we’ve used all too often in health care ethics is principal autonomy beneficence. And when you’re talking about pediatric patients, they don’t have that. You can’t use the principles in peds because we say, well, legally you can’t be your own decision maker. Well, I mean, I’ve worked with kids who are seventh and eighth grade and you’ve talked to them about their oncology diagnosis and man, those are kids who are well beyond their years in their wisdom and their understanding, and sometimes we push things at them that maybe we shouldn’t. And so the Catholic tradition actually about proportionality and disproportionate treatment, which this was a couple of Dominicans back in the 1500s that we’re talking about proportionality. It still is in play today. It’s economic proportionality. Should a parent really have to quit their job and be the primary caregiver for a kiddo, what does it mean to go bankrupt as a family or hopefully if their insurance can revert over to state insurance? These are questions that I actually think the Catholic social and the moral tradition give us a lot of room to answer. And we can take those tenants, whether that patient in front of us and their family are Catholic or Christian.

Dr. Ian Wolfe: So how do you see that playing out when you think about in that granular level of decision-making, both maybe where parents are struggling with some guidance for how to make these decisions, I think of our NICU families who are facing significant uncertainty around outcome, pretty intensive treatment sometimes with questions of long-term quality of life, survival, et cetera. What are some thoughts on that space, both from your perspective as a bioethicist and mom, and thinking maybe about bias that medical teams come with?

Mary Homan: The first bias that we often come with as clinicians and care teams is exactly the phrase that you use. Quality of life. Quality of life, what we know and the disability community and disability ethics has pushed back significantly against that language, right? Because it becomes a type of moral relativism, well, I wouldn’t do this for my baby. I wouldn’t do that for my grandma. I could never. And so it becomes judgment. And again, that’s where I feel like the language of proportionality is so integral into the conversations. The other aspect that’s really hard is especially with our little itty bitty babies, so let’s say we made it through a traumatic delivery. There was a resuscitation effort. Baby is significantly premature, small, all those complications. And so right now you’re asking questions of people who have not gone through a “normal” delivery process, this baby that they wished for, they hoped for, they planned for, they were scared by, they were surprised they didn’t plan for, they have not been able to go through the typical process of what that looks like, and that doesn’t matter what faith tradition you are. And so that’s the part where I think all of us need to slow down and say, oh my gosh, in terms of the grieving process, where is this family at? And in some ways, can they even make informed decisions because they are so plagued by guilt and grief and confusion. And so when we use a word like quality of life, then people automatically say, you have to keep fighting. We have to do it. They deserve a shot at things. This is where I think actually the nuance of the Catholic moral tradition could be really helpful because it’s not life at all costs.

In a Christian eschatology, that is the study of the end times, our eternal destination is to be with God. It’s to go to heaven. And so our whole time on earth is to bring about the kingdom of God on earth and then to celebrate in the kingdom of God in heaven. And so we can’t get people to heaven sooner, so we can’t intend for the demise of another, even to put them out of their suffering. So that’s not acceptable. But foregoing excessively burdensome treatment, if that is actually impinging on someone’s ability to experience salvific love, what if we had conversations like that? Now that’s a profundity that again, most folks theologically that’s not where they are, but if our clinicians have capacity to understand, but wait, the whole plan is to get to heaven. And so if we are causing undue suffering, and I’ll put a pin in that for a second because I do want to go back to suffering, there is also this idea of how do we give our suffering to Jesus? I, as an adult, I can give my suffering to Jesus. I can pray 800 Hail Marys when I have a migraine, but I cannot put my child through suffering and give it to Jesus. I want to decouple those two sentiments. And so in essence, what we could help parents reconcile when we have these really hard conversations is to say, yes, your child could survive, but what will it do to their dignity, to their suffering, to everything else? And I think in general in peds, we need to have more conversations about this. I remember getting an ethics consult early in my career. I had a tearful occupational therapist in my office because she had broken the femur of this incredibly pre-term NICU baby. And she’s like, all I needed to do was wipe their skin, maneuver them over in a little bit so they could manage being held. And they were so fragile. And she said, the family needs to know this. And that’s the thing is again, a Catholic ethic says the ends can’t justify the means anymore that the means can justify the ends. So survival whereby we break all the little bones in your body, where you have had a tube down your throat for so long that you can’t even cry. And so then we think, oh, the baby’s fine, but the baby can’t cry. The baby doesn’t even have those typical. And so that’s the part again of saying, we can’t do this and then justify that life. And so that again, I think is that utilitarian ethic that so much of other ethical decision making is premised on, is antithetical to the Catholic moral and social tradition. And so being able to have that language to talk to families about what does this mean and what is the miracle? What’s the miracle now? And what’s the miracle to come?

Dr. Ian Wolfe: I try to impart that onto both clinicians. And when we do consult and talk with families and we do consults where we meet with families, our palliative care team is wonderful and doing goals of care too. And sometimes ethics can come in and really just talk with parents about how do you make ethical decisions as a parent, and of course, we work with a number of parents from a number of different backgrounds, and so we always try to ask them what their beliefs are and help them navigate to that. But I find proportionality really transcends different faith perspectives because it reminds us, it reminds clinicians too because so often we assign this sort of inherent value to medical interventions until we’ve determined subconsciously that it’s not good anymore, but we don’t really have the words for it. And so that proportionality really reminds us that the medical interventions we’re going to do, whether it’s chemo, whether it’s a feeding tube, whether it’s these things all come with burdens that we’re tolerating for a benefit and the importance of it moving away from that utilitarian sort of what is the end quality of life to what are we willing to go through for what potential outcome and when and I find that really helpful for parents and also for clinicians to understand just the weight of what we’re doing. And then it helps I think, with that shared decision making between the clinicians and parents and gets from this lack of communication around quality of life, which is problematic, as you say. The other thing that you sort of put a pin in, I think that’s important to talk about is suffering. We used undue suffering a lot, and that’s a really important phrase because undue might be very subjective based on the individual, but also suffering can be a really complicated term because of course, people suffer all the time. I always say people training for marathons and running marathons is a form of suffering that they tolerate, and there’s a redemptive power for some folks in suffering. And any medical intervention is inherently going to bring in some sense of suffering. So I like that distinction that you made a little bit. How else does the Catholic faith and bioethics think about suffering in that way? You mentioned the difference between allowing for my suffering as an adult versus a child.

Mary Homan: I think that’s probably, again, something that is not often talked about, but we can see it in small ways. So for instance, a lot of times we have sort of the stereotype about Catholics during Lent, that Catholics give up something. And the premise of that is to say, what is it that’s keeping me from God? What is it that is keeping me from being in full right relationship to let God enter my life? So if it’s alcohol and I consume too much alcohol, I should abstain from its own order to be closer to God. And so we don’t require, nor do we really allow our littlest kids to participate in that. So I have a third grader and starting in first grade, I said, what are you going to choose to do and give back in community, whether it’s your school community that’s choosing the good, that’s sort of abstaining from that, which is keeping me from God. That was fine, especially since he hadn’t gotten his first reconciliation yet. And then after we went through first reconciliation, we had a different conversation last year. And then this year as a third grader, it will begin, what is it that’s keeping you from being your full, authentic self? Suffering could be seen as akin to that.

I as an adult can make a decision to say, I’m abstaining from this, but I can’t withhold something. It would be meaningless if I said, Blake, you are not allowed to watch television. You’re going to give up television. I believe that it is impeding your ability to be closer to God. And so what does that prove? So then I say, okay, then go read scripture quietly. I’m not modeling a good behavior for him. If I say, you know what? In the evenings as a family, we’re just not going to watch television after seven o’clock and we can do quiet reading and I can set a standard and an expectation that he can mimic and then he understands if he was the same age and he has a headache, of course I’m going to be prudent with determining if I give Tylenol right now, what are the side effects? How will it affect his internal organs? I make an informed decision, but if I say, you know what, go say five hail and then you No, no, God gave us brilliance and science so that we could take these tools and use them for the good. And so to actually not use them and to withhold them is in some ways testing what God ought to be, which is all knowing, all present, all loving. In a larger way if I say, you are dying my small child and I want you to be awake while you are dying, and so I don’t want pain medication. No, absolutely no, that is for the parent. That’s not for the child. And again, I think sometimes there’s a perversion of how we understand the role of faith and fear and those pieces. And so to say people should be kept as pain-free as possible. They should be kept right. We don’t just want to overly give pain meds, but especially for the vulnerable like children, we can’t withhold that from them or that we have to somehow say, you can suffer with Jesus. I can be emblematic and say, I choose this and you can follow this example. And when you get to be the age of reason. Then we can make those decisions. But I have a responsibility as a parent to protect. I say that as a Catholic parent, I said, as someone who’s trained in theology and ethics, who has worked in peds ethics. And I think that that’s sometimes of like, then how do you have that when you do have a goals of care conversation? And even if you have a small kiddo who says, I would like to give my suffering to Jesus, I still think theologically we have to pull that out a little bit and understand. We look at the stories of the saints and sometimes we hold them up and we romanticize whether it was ways that they didn’t eat for days on end in order to be pure of heart. Those are important stories and also things were different and how we understood mental health, how we understood our relationship with the rest of the world and so we do have to in some ways have both a historical reference point when we look to some of those who did as saints give their suffering to Christ or to Mary and also use our 21st century hermeneutic about what we understand now.

Dr. Ian Wolfe: Yeah, recognizing that parents haven’t had to really apply their faith to the medical decision making, often clinicians might come in with different biases or not understanding. What would you say as a bioethicist and a mother then in that space to parents and maybe clinicians of how do we come together to recognize that difficult space and try to help each other through it?

Mary Homan: I think that sometimes we’re so outcome oriented that we need to spend time in the process. And so I’ve watched clinicians who come in and they never really get to telling a parent how bad it is. In their mind, they’ve use these really important clinical terms of this is the survivability, this is what the literature and that can work. Or it’s this idea of we come in only with the facts, this is what it is and make a decision. And so what if we started things off in general with more of a conversation of, tell me how you understood where we are now. Tell me how you understood where we came to be. Because in some ways, that’s the same way that we talk to our children. So if a baseball comes through my window right now and I go run around outside and I say the facts of somebody’s baseball went through my window, who’s responsible? Okay, we can get to that. But that broken window, I feel like, well, I was here and this was my space and I didn’t even know that this was going to. And so we don’t even capture all the essence of what that window represents. For a lot of Catholics, we probably know there’s a presumption in favor of nutrition and hydration. That we should not intend the death of another. There’s no such thing as mercy killings. That miracles happen and that we pray to certain saints because miracles happen. And there’s even saints who, or persons who are on the way to sainthood that we attribute more to so that they can go through that process. And I’m not denigrating any of those aspects. They’re critically important to our faith. But sometimes what happens is if I were a mom and I said, I’m going to pray for a miracle, I believe that brother, sister so-and-so is on their way to canonization, I’m going to attribute I believe that you can save this. It’s the yes/and. If we really believe in a miracle and we really believe that the hand of God can intervene, then it will happen. That does not mean that we don’t use or respect the technologies or the lack of technologies that are being offered to us, but sometimes what we don’t allow is the spirit to come inside of us and help us understand the truth of what needs to happen. And in our conversations, we don’t just sit, I think we do it more in peds ethics than in any other space. So having worked the majority of my career in the adult space, we have a lot more goals of care, family care, conversations with parents in the rooms with the kids we ever do with our adults. So I think about ethics, we can learn a ton from how do we just sit with those families in the silence and let the silence speak, and then that’s when questions come up. And then it’s when the existential, the spiritual fears can finally manifest. And that people don’t always know. Maybe they do have a good relationship with their parish priest and maybe they call them and say, can you come in? But sometimes all that they have at their disposal is they can do anointing of the sick, which is a beautiful and profound and we need to do it more. One of my most very favorite images is with Cardinal Cupich in the room with a young, probably elementary school kid hooked up to every kind of technology, and he’s in contact precautions. She is just looking at him and he just puts his hand on her head. We don’t do enough of that. And even those of us who go to church, we don’t get to know our priest well enough to say, I need you there every day.

For me, I will be the Catholic mom that says, we need anointing to sick every day. My kid can receive communion, and if he wants it, I want it every day. I want it for myself every day. I’m going to be down in church in the chapel praying, I will be on my knees. And then you’ll say, weren’t you on this podcast talking about proportionality? But I’m a person of deep abiding faith, and so what’s the both/and? How can you speak to even for me, how would you speak to both pieces? And that’s where I think care teams need to know. You might not know how deep or not deep someone’s faith or that they don’t know that it says yes, there is a presumption in favor of nutrition and hydration if it won’t cause sufficient burden. And when we think about withholding nutrition and hydration, especially for little ones, it feels different than it does for someone who has lived their whole life, suffered a catastrophic stroke and is eligible for hospice. But those same things could have happened in utero to that baby. It could be all the same clinical facts.

Dr. Ian Wolfe: And moving a little bit towards how the clinicians can meet parents in that situation. I think part of that is maybe looking at the biases, of course, that well, they’re Catholic, of course they’re going to do everything. Oh, they’re Catholic this. They follow the ethical religious directors of the Catholic church. And we also, of course, you and I know, and most people know that Catholics are not a monolith despite having what I to be a fairly robust history of tradition in bioethical discourse. What advice would you give for clinicians showing up and coming and meeting a family?

Mary Homan: A lot of it is dependent on your own community. And so I know for your hospital, you are both a regional presence as well as a specialty. So you probably have folks who belong to your community that live within driving distance of the hospital. I think getting to know and doing outreach, and I think you’ve done that before. I consulted you on a case that I had with a different religious church, just to get a sense of that and getting to know and having somebody and saying, you know what? Actually father so-and-so, he comes to a lot of our things. Would it be helpful? He’s not on staff with us, but he knows us or do that outreach because then you get credibility in a different way. And you’re right, there are lots of different flavors. There are folks who really believe that what came out of the second Vatican Council was not what it should have been and hold a preconconcealer interpretation of what one is obligated to do. And I think just knowing, so if that is a particular parish in your area, then get to know and understand what those might be. Because again, you want to be on the same side as the idea of shared decision making is different in the peds world than it is in the adult world in many ways because you have almost competing understandings of best interest because you can’t have substitute judgment, right? This little person has not, for the most part, if they’re a little bit older, then maybe have a sense of substitute judgment. But is that something to get to know what the flavor of things? Or maybe was someone who when they were pregnant, they received a terminal diagnosis and then they were told, you won’t be able to go to church, you won’t be able to go to communion if you terminate this pregnancy. So they may have lived that whole pregnancy in fear of even though they were devastated, and maybe they did want to choose that, and they may have been applauded for not terminate. So it becomes this kind of martyrdom that is a very complex theological and psychological burden to unpack, and then all of a sudden be like, okay, then I don’t want any treatments. And then maybe the clinician’s like, no, no, no, no. It will be okay. We see a hundred babies like this. This is fine. This is actually normative. They’re like, no, I don’t want anything done. I’m done.

Dr. Ian Wolfe: Sure.

Mary Homan: But they would have made a different choice, but they couldn’t. So now that’s the piece, the clinicians, that’s a whole different way of saying, well, why couldn’t you? Or I think also there’s a lot of bias with regards to the number of children that Catholic families often have. So the idea intercourse, the idea of theology of the body is that if a man and wife come together as husband and wife, then they’re always open to procreation. And so then if we deliver this baby and we say, you can’t have another baby, if you get pregnant again, then we need to have a conversation about abstinence and we need to be able to talk about abstinence, to talk about the Creighton fertility method, which is a natural way of being able to be intimate with your partner without running the risk of being pregnant. And actually in terms of knowing and having the intimacy of relationship. Many have said that that has sustained their marriages, but I think there are a lot of clinicians who are no way, that is not scientific. And so then we tell these mothers, you need an IUD. You need to get your tubes tied. We’re going to make a CPS referral. I mean, talk about alienating a whole population, or if we talk about it on the side, then what does that mean? And so for a tradition that has abjectly rejected artificial means of preventing pregnancy, the clinical world does an awful lot of pushing when it’s well known, right? We wouldn’t do the same to someone who abstains from a particular meat product. We wouldn’t say, oh, no, wait, it’s totally okay. This meat product will give you all the protein and antigens that.. we would never do that.

But we do that. Or if we’re seeing a kid in clinic and they’re 13, 14 years old, how do we have an informed consent conversation with them? How do we honor the fact that they have a faith tradition? For most of our states, there are reproductive health privacy laws for that, but knowing our patient really means saying, you know what? Could you have a grownup that you can trust and talk to? This seems really important. Yes, we can solve for this. And what does this mean? Because otherwise those families absent themself from the health care arena than they go a different way. And then we have other conversations about other naturopathic and other things because they’re not coming to clinic. And so it’s those biases. And again, it’s not just the pro-life stuff at the beginning of life. It’s also this continuum of what does this mean?

Dr. Ian Wolfe: That’s really helpful advice. It’s this way of balancing. I mean, really for you and I, it comes on to be very simple of getting to know the patient and understanding sometimes easier said than done in our medical world these days with limited time. But also then, yeah, how do we come together in those decisions to maintain that trustworthiness, which is really what’s going to be long-term beneficial for both patient and child. What are some quick takeaways that you could give to both parents within the Catholic faith facing decisions? What things could they ask? What things could they look for, resources, et cetera? And similarly, same question for kind of alluded to this, but for the teams working with Catholic families,

Mary Homan: For parents, I would say find out what your resources are locally within your community, whether it means talking to your parish priest, whether it’s calling your local Catholic hospital, finding out who’s a professionally trained ethicist in that space, who’s dealing with these things. Look at one of your mom groups. A lot of us are in those groups. We try to be helpful in those ways. And dad groups too, but mom groups especially. But also, again, just think it’s not a black, white, a yes, no moral immoral. It’s the fullness of what will bring us to right relationship. How can we authentically show love. For practitioners it’s also recognizing that there are things that can be inherently important to persons of faith, and they need to be accepted with the same veracity that we would take any gold standard, two arms, placebo plus study, right? It’s a literature says it. And the faith, because we have 2000 years of this tradition that we have spent time trying to understand and then being willing to say, who are others that can help you in this process, that can help you make this decision?

And I think lastly, how do we create space in all of our areas where persons of faith, not just chapels, not just walking away, but how do we create a sacred space? I mean, healing in and of itself. Jesus was the healer that we talk about the most, right? And then throughout history, we have emblematic healers for all of our traditions. So for persons who are Christian, how do we bring that in? If people have devotional to Mary, how do we think about, do you want us to post something on the wall? Is this something important? Who is the saint? Is there somebody? But being able to have that language the same way that we would’ve cultural competency with other things, I think is really important. And lastly, just be willing to listen and to be really intentional on all sides, whether I’m as a parent or a clinician to set aside what I would do for my kid. I mean, to think about what is the best interest of this really vulnerable patient in front of us, and then see how we can come together to a shared understanding.

Dr. Ian Wolfe: Really, really great advice. And I think a lot of us in a lot of spaces could heed these days. Well, Mary, thank you so much for talking to us. This conversation really filled my cup for the day. I really appreciate your work and being willing to share your time with us and trying to help parents, kids and clinicians who care for them.

Dr. Kade Goepferd: Thank you for listening to Talking Pediatrics. Come back next time for a new episode with our caregivers and experts in pediatric health. Our showrunner is Cora Nelson. Episodes are produced, engineered and edited by Jake Beaver. Our marketing representatives are Amie Juba and Krithika Devanathan. For information and additional episodes, check us out on your favorite podcast platform or go to childrensmn.org/talkingpediatrics.