Transcription:
Hope and Spirituality in Bioethics

Dr. Brian Carter: Hello, this is Dr. Brian Carter, speaking to you from Kansas City at Children's Mercy, Kansas City Pediatric Bioethics Center. And I have a guest for us today named Dawn Hood-Patterson, Dr. Dawn Hood-Patterson, who holds a PhD. She has a background in chaplaincy and spiritual care, and has studied and developed qualitative analytic techniques. She's putting them to use these days as she serves as a pediatric bioethics fellow. Dawn, say hello to our guests.

Dr. Dawn Hood-Patterson: Hi. Thank you so much for having me today. It's such a pleasure to be here, a chance to talk about what we do here at the Bioethics Center and what I do as a fellow.

Dr. Brian Carter: So, why don't you take a moment, Dawn, and tell us what it's like to be a pediatric bioethics fellow at a Children's Hospital in the Midwest?

Dr. Dawn Hood-Patterson: It's ultimately a delight to be the Bioethics fellow here at Children's Mercy, Kansas City. One of the reasons that it's such a delight is because every day is a little bit different. There's several different opportunities to explore new questions, new ways of thinking about the world, new ways of engaging with patients, families, and then other clinical staff.

And so, one of the things that I do is I participate with clinical consultations, clinical ethics consultations. So if there's an ethics question that comes up, I help out thinking through that question, helping to distill what the question might be, helping to tease out different ways of thinking about the issues that are arising within a clinical context.

Another thing that I do that's so interesting for me is the ability to do a little research around ethical questions that emerge. And as you mentioned, I'm a qualitative researcher and I know that we'll probably talk about that in a little bit more detail, but I get to apply qualitative research methods and methodologies to ethical questions here at Children's Mercy.

And one of the things that's so compelling about being the fellow in a pediatric setting is that it affords the opportunity to think about ethics really specifically and critically related to pediatrics. It's a different world than the adult ethics world. And so, having a place to specialize on pediatric ethics is just such an interesting place to be.

Dr. Brian Carter: Well, thank you. You've said a couple things there that make me want to ask for a little bit further of an elaboration. Give an example of how pediatric bioethics is different than adult bioethics.

Dr. Dawn Hood-Patterson: Well, I think ultimately you have added stakeholders in conversations. And then, sometimes the stakeholders don't have the political power or the legal power to make decisions in ways that adults can. And so, helping to tease out some of these questions related to who gets to make decisions for the patient because usually the patient doesn't have either the capacity or the legal ability to make decisions for themselves, which is pretty different than some of the cases that come up in the adult world.

Dr. Brian Carter: So, children don't have a voice, is what you're saying?

Dr. Dawn Hood-Patterson: No, not at all. That's not what I'm saying. So, thanks for highlighting that. Children, and it depends on the age of the child, of course, but children are usually quite active in participating in their care or rejecting their care. But sometimes, they need help elevating their voice or sometimes we need to rely on caregivers and parents to help make the best decisions that we can for the child when the child is not able to weigh the potentials and the costs of treatments or decisions that they're making in a pediatric setting. And then, you have the tiny ones, that they don't communicate with the same language that adults communicate. They may cry and they may fuss, but we can't interpret that as a deciding factor. And so in that regard, we rely on caregivers to help us weigh what options are best for them as a patient.

Dr. Brian Carter: That's a great distinction. And so, what I'm hearing you talk about is the best interest standard and that's certainly something we could all understand. We want to do what's best for children, although there may be different options that different stakeholders consider to be best. And yet, it's not the individual child often that speaks for him, her or theirselves, it often is a caregiver, as you said. Sometimes, it's a professional caregiver. Other times, it's a parent. And when they speak, they're speaking for somebody else. So, that's not quite the same as the ethical principle of autonomy, is it?

Dr. Dawn Hood-Patterson: That's right. Although children often enact their own autonomy and they also enact their own agency, we really do rely on, as you say, caregivers, whether they are familial caregivers, parents or grandparents or professional caregivers to help us understand best how to proceed with treatments or options for a child or a pediatric patient.

Dr. Brian Carter: And when you said you sometimes are called for clinical ethics consultations, is there some occasion where it's clarifying whose voice matters that might represent such a consultation?

Dr. Dawn Hood-Patterson: Yeah, absolutely. It's oftentimes weighing who is involved in the decision-making moment or question, but then also helping to elevate or tease out the different dynamics within who is contributing to the discussion and who has the authority to make decisions around the question that arises.

Dr. Brian Carter: And so, parents generally speaking deferred to and have historically, socially, and even legally recognized voice and the authority to speak on behalf of the child. Isn't that right?

Dr. Dawn Hood-Patterson: They do. And certainly, there are occasions in which that's one of the questions that an ethicist might be called to ask about. Because while parents usually are given priority or privilege when it comes to making those decisions, there are times whenever perhaps the parent or caregiver is not acting in the best interest of the child, and that's when we start to tease out what factors go into making that decision that would deem it the best interest of the child. And then, you include other voices in the decision-making process at that point as well. And sometimes that's where it can get a little tricky or sometimes even emotionally difficult, particularly for parents and for healthcare workers, healthcare professionals as they weigh out differences in opinion, differences in rights or perceived rights, I should say, when it comes to making some of these decisions, particularly whenever there's disagreements.

Dr. Brian Carter: That's very helpful. Can we turn to your training as a chaplain and your experience in spiritual care services? And maybe you inform us how that intersects with your work in bioethics or informs your methodology.

Dr. Dawn Hood-Patterson: Sure. I am really grateful for this training that I've received as a chaplain, because I do approach questions of ethics in a way that is informed by that training. And one of the things that I think is very compelling about professional healthcare chaplains is that they all go through clinical pastoral education.

And clinical pastoral education is an opportunity where emerging professional chaplains are working in a clinical setting providing spiritual care. But then, they have education experiences during the week that helps them reflect on those clinical engagements. So, the model is action-reflection-action. And what that means is that you act, you go and you act as a chaplain. Then, you come back to the classroom, you come back to mentorship, you come back to peer conversations. And you reflect upon the actions that you took. You think critically about what worked, what did not work, and why. It's not just outlining what worked and what didn't, but you really engage the question of the why. And then, you layer on top of that purposeful self-reflection. The intent of that is to help you really engage with where are your biases, what gets you wrapped up in a certain part of the question rather than being able to look at the question or the problem in a more robust or nuanced way because you're so hyperfocused on one aspect of that question. So, that's what happens in the reflection part.

And then, you take those lessons that you've learned, that you've written about, that you've researched, that you've talked with your mentor and your peers about, and you go back and you act again. And then, you go back into the clinical setting, you go back and you engage in spiritual care and you take those lessons with you, so that hopefully your actions become more serviceable for the clinical setting in which you're providing spiritual care. So, that's one way that spiritual care really enables, I think, the question of ethics, because you're constantly engaged in this reflective practice. You're always thinking about the question that is emerging, whether it's a spiritual care question; as I've transitioned to ethics, the ethical question; and what sort of resources can you engage with that question, what sort of biases are you potentially bringing to the question, and how can you refine and engage the question in more complicated or nuanced ways to apply that to the situations that emerge.

I also think that chaplains and spiritual care providers can bring-- and my training has brought-- is the ability to think critically with staff in the clinical setting, physicians and nurses and respiratory therapists, and then also with patients and families about their values and help them understand how their values might be informing the way that they're viewing the experience.

Dr. Brian Carter: So, I would say that's very helpful, insightful. It really facilitates what I think of when I address bioethics consultation, and that is first understanding the situation, deriving what the question at hand is, and understanding through a values clarification process more about the patient, the story of the family, and what's important to them.

And then, entering into some reflection, I hadn't quite labeled it that in my ethics consult write-ups, but it's very much a part of what we do. In medicine, broadly speaking, so I should say clinical practice, reflective practice has garnered a lot of attention in recent years. So, just hearing you elaborate on that action-reflection-action process, I think that there's bound to be ways that you bring to life reflective practice that others can learn from.

I'd like to turn right now to a recent piece that you wrote in the Children's Mercy Link, which is a local newsletter, both electronic and print. And it was entitled Hope. Can you tell us in a succinct manner what that piece was all about? Because I'll tell you, I've got lots of positive feedback from other staff about it.

Dr. Dawn Hood-Patterson: Well, thanks. I was delighted to write this article about hope. You know, you mentioned I'm trained as a theologian and I come from spiritual care as a background. Hope is a concept that usually is rooted in theology circles, not always, but has deep roots within theology. And one of the things that I've learned thinking about critically engaging this concept of hope over time is the idea that, one, hope is future-oriented. We certainly want to pay attention to our past. Our past is where memories reside. Even where we think about symptoms emerging, if we're talking about a disease, we certainly pay attention to our present. When we're in a clinical setting, it's hard to not pay attention to the present and what's happening right now.

But then, hope is really something that resides in the future. It's future-oriented. It casts our vision into the next phase or what we anticipate coming. And so in this article related to hope, I really wanted to tease out how hope can be both a noun, something, or a goal that we aim to achieve or where we set our expectations. But it also can be a verb. It can be something that moves us in the direction of the future.

Dr. Brian Carter: I'm a hopeful person.

Dr. Dawn Hood-Patterson: That's right. I'm a hopeful person, yeah. And it's theologian Andrew Lester actually who named the hope as a goal as the finite hope. But then, the hope as the process or the movement of hope as the transfinite hope, that's the hope as a verb. And I think of it more along the lines of hope can be the destination, but hope can also be the journey, the process of getting there.

Dr. Brian Carter: And it could be said to be the journey of hope is I'm living in hope.

Dr. Dawn Hood-Patterson: Yeah, I'm living in hope.

Dr. Brian Carter: It directs me. It's part of who I am every day. Is that fair?

Dr. Dawn Hood-Patterson: I think that's completely fair to say that it can be kind of the nuance of how you see the world and how you go through life, or how you even set up the way you think about a problem. And so within this article, I really wanted to point out the fact that hope isn't just this finite thing to which we set our esteem, but it can be that process, and the process itself can be really helpful to families. If we as clinicians, when physicians, when nurses start to help families think about hope as a process, they start to ask questions differently. And so, that was the premise of that article.

Dr. Brian Carter: Thank you. And so perhaps, clinicians can learn to be hopeful with families in patient and family-centered care processes. Before we close, I'd like for you to elaborate a little bit on your research techniques, which are qualitative. And I'll just give you a little understanding that, I guess you could say I'm a simple tune at heart, but years ago, when I was a boy scout in Tennessee, I used to be able to identify every tree and know it by its bark and its leaves. And so if I were to count the number of trees within a square mile or the number of maple trees, oak trees, elm trees, fir trees, pine trees, that's what I would consider to be analogous to empirical research. But in qualitative research, I would say I'd need to dig deeper and understand why certain trees thrive and others don't. I'd really have to look at the entirety of the ecosystem. Is that a fair way to distinguish between empirical and qualitative research?

Dr. Dawn Hood-Patterson: I do think that that's a fair thing because I think what you're pointing out is the reality that qualitative research will tell a story by shining a light in a new way, looking at context, looking at relationship of things. And that's one of the things that I find most compelling about qualitative research. I think we need both, because both types of research tell stories in different ways. They look at the question and the questions differently. And I appreciate the idea of telling the story of the forest in these two different ways that you've highlighted for us.

Dr. Brian Carter: The late internist and ethicist, Edmund Pellegrino, once wrote a very small paper that was very profound in my mind, and that was entitled or certainly addressed the limits of empirical research in ethics. In other words, ethics can be studied and people can tell you what they do, perhaps even why they do it, but that's like counting trees. Actually, watching them, being with them, doing the action-reflection-action methods that you mentioned earlier is far more informative, in fact seems to me to be the principle ground in which ethics is asked to operate. Comments before we close?

Dr. Dawn Hood-Patterson: I think that you're right on the money in that people do life in such nuanced ways, in such different ways. And having the ability to use qualitative research to show some of that nuance, to elevate that lived experience is really powerful and it really supplements empirical research.

Dr. Brian Carter: Well, thank you. Once again, this has been Dr. Dawn Hood-Patterson, our guest this day as we talk about ethics in the Children's Hospital. And in particular, we'd like to sign off and invite you to come back at a future date to learn more about pediatric bioethics. Until that time, this is Dr. Brian Carter from the Bioethics Center at Children's Mercy of Kansas City. Do good work and be well.