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Ethical Aspects of Rural Healthcare, with Stephanie Larson and Devora Shapiro

Date: December 3, 2024
Duration: 45 minutes

Devora ShaprioStephanie Larson

An interview with Stephanie Larson, PhD, an Associate with the Institute of Ethics at the University of New Mexico Health Sciences Center and lecturer in the English department at Case Western Reserve University, and Devora Shapiro, PhD, Associate Professor of Medical Ethics at the Ohio University Heritage College of Osteopathic Medicine. In this episode, we learn about the four central principles of ethics to rural healthcare, and how different roles and responsibilities require different ways of applying those principles.

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Organizations and resources mentioned in this episode:

Transcript

Andrew Nelson: Welcome to Exploring Rural Health, a podcast from the Rural Health Information Hub. My name is Andrew Nelson. In this podcast, we'll be talking with a variety of experts about providing rural healthcare, problems they've encountered, and ways in which those problems can be solved. Today I am talking to Dr. Stephanie Larson, a lecturer in the English department at Case Western Reserve University, who's also an Associate with the Institute of Ethics at the University of New Mexico Health Sciences Center, as well as Dr. Devora Shapiro, Associate Professor of Medical Ethics at the Ohio University Heritage College of Osteopathic Medicine. Thank you both for joining us today.

Stephanie Larson: Thank you.

Andrew Nelson: Last July, you both presented your work in rural healthcare ethics at the Ohio Rural Health Association Conference. Can you both just kind of tell me what originally got you interested in this topic?

Devora Shapiro: Dr. Larson? Why don't you go first?

Stephanie Larson: I have a pretty longitudinal interest in rural. So, I grew up in a rural community in East County, California. And then during my dissertation work, I actually did research on the intersection of narratives and public health campaigns focused on treating and preventing endemic diseases in the context of the rural U.S. and Global South. And then during a predoctoral teaching fellowship, I was in New Mexico and got to see this interesting space of a state that is very, very rural, but has a big academic medical center that meets a lot of the needs of rural population. And then during my fellowship, I was able to actually get some specialized training during a rotation in a Critical Access Hospital, to actually learn more about rural healthcare ethics in the actual context of a rural space, which is not very common in clinical ethics fellowship training. Most of the fellowships are centered at big academic medical centers or big academic institutions. So being able to get that training in the actual context of a rural space was really wonderful.

Devora Shapiro: So my background is a little bit different than Dr. Larson's. I am a philosopher, and previous to doing the work as an associate professor of medical ethics, I was actually a professor of philosophy out in Oregon, in southern Oregon, which is a very rural area. And my experience out there through the course of teaching and doing work specific to medical ethics and healthcare ethics with the community that was around there, I began to realize the really serious complications that come along with being in a rural area and the unique kinds of ethical issues that arise that really aren't on the radar for those larger medical institutions that are in bigger cities; the academic medical centers that really produce a lot of the work that we think of as our contemporary medical ethics, they're not rural. And there were a lot of things that came up in the course of my experience out in southern Oregon that were not properly addressed and just not centered the way that I would imagine they ought to be centered based on a rural lens. And so, after coming to Cleveland and doing my clinical fellowship over at the clinic, when I began at Ohio University — Ohio University specifically has a lot invested in rural health. And the medical school is very focused on placing their graduates as practicing physicians in rural spaces.

I'm a social philosopher utilizing a lot of different kinds of methodological approaches, specifically situated and embodied approaches. And when that's your background and that's how you approach problems, the first questions you start to ask yourself are, "Where am I, what does my community need? What's relevant to this institution?" And so, when I started working at Ohio University, given the mission and vision of being part of producing healthcare access for rural spaces, I realized that my experience out in Oregon might be really meaningful to be able to add and develop that rural healthcare ethics focus. And my hope at this point is to sort of get that going to get a little more focus at the larger national level.

Andrew Nelson: What do you see as some of the most pressing ethical issues in rural healthcare today?

Stephanie Larson: So, there's a number that come up, some intersect across the board in any type of healthcare environment. Others really are specific to urban. So, I think one of the biggest ones is going to be mistrust. There was a really wonderful piece that actually came out in the Journal of Rural Health in 2022, talking about mistrust from a public health intervention standpoint. So that mistrust that's already kind of permeated across the U.S. in particular I feel like is going to be compounded with misinformation surges in things like social media and rapidly developing AI technology. And how do we combat these big questions in a rural context that maybe does not have the same resources for public health campaigns or more policy-based interventions within that community?

Some other issues that come up are decision-making. So, as we see more states passing medical aid and dying, what does that look like for rural practitioners who may be tasked with being the only individual who can provide that type of care or treatment? Contextual decision making, right? Making decisions about whether somebody is going to receive care in their rural community, or, if that resource isn't there, is pursuing care outside of their home, outside of their community and their network at a larger, more urban center where that care is available. Is that something that they want? Conflicts and values, overlapping professional and personal roles, not just caring for your family as a clinician, but also caring for the person that coaches your child's team, or caring for the spiritual leader in your community. How do you navigate those conflicts, balancing public health and respect for individual autonomy? I think this links back to questions of mistrust.

So not just misinformation, but also not having all the information to make lots of big decisions. And how do you respect both what your patient wants to do while also knowing what's going to keep that community healthy, and having those decisions in play.

Some other big areas that I see challenges are with resources. So, there's a lot of talk in rural spaces about resource limitations. And so, from the ethics side, we can think of resource limitations from both the ethics when it comes to consultants, committees, education, right? You have access to somebody who's trained in ethics, who's working in your community, who has some of the tools and the language and the skills to navigate or untangle some of these really thorny dilemmas, and then also the resource side of things. So, caring for aging populations, patients with disabilities, Lisa Iezzoni and her colleagues, Mary Killeen and Bonnie L. O'Day, way back in the early 2000s, identified these issues of access for folks with disabilities who aren't able to get full care because of limitations.

And then really recently, Allee Mead had a wonderful piece in the Rural Monitor about improving care and accessibility for rural patients with disabilities. So this is a longitudinal ethical issue. How do we provide that care? And how do we make decisions maybe when those tools or those resources aren't as readily available? And then finally, this concept of care deserts, which my colleague, Dr. Shapiro, her research, thinking about things like justice and access are so important. So, what happens when there aren't those providers, or when you're getting an influx of folks from other states, or folks that you don't have that person that can provide oncology.

And then finally, technology. So, issues of the widening gap between access to things like AI integrated into healthcare and charts, be[ing] able to provide the same access to telehealth, to electronic medical records that easily translate between that rural healthcare space and the urban institutions where somebody might be receiving more specialized care.

Devora Shapiro: So Dr. Larson went over the wide range of those kinds of issues. And I would say that for me, what I see as really the most pressing ethical issue that's involved in rural healthcare is, as Dr. Larson mentioned, the disappearing access for healthcare. So, what happens generally is that we have these larger healthcare companies that come in and buy up hospitals, and what can happen after that happens is that those hospitals can get shut down, or individual services can get pulled back; specifically, for example, labor and delivery. And so, these are the sorts of things that I get very worried about. There are fewer providers, there are fewer institutions that are out there serving individuals who are in rural spaces. And I'm worried about making sure that we have the resources needed to serve the people in the rural areas. And when you don't have those resources available, that raises a lot of ethical issues. And actually, the activities of these larger healthcare corporations in buying and then shutting down healthcare access is also itself an ethical issue.

Andrew Nelson: How have you connected with other folks across the country that are also focusing on rural healthcare ethics?

Stephanie Larson: So, the American Society for Bioethics and Humanities is our professional organization. So, both Dr. Shapiro and I, as clinically trained fellows in clinical ethics, are part of this organization. But within it, under that big umbrella, are affinity groups. And so, one particular affinity group is the Rural Bioethics Affinity Group. And so, the goal of this group is to bring together folks from all different backgrounds who are working in or have research interest in rural context and the healthcare ethics issues that arise in those contexts. And so, I'm currently the lead of the Rural Bioethics Affinity Group, and our goal is to make space for folks to connect, both in person at our annual, larger, professional conference for the American Society for Bioethics and Humanities, but also in the virtual space, acknowledging that folks working in rural spaces cannot always commute to conferences. They may not have the institutional backing or funding.

And so how do we make space in the virtual context or through the internet, through email and other ways to connect and have speakers, or have a case series where individuals can share the cases that they've encountered in rural context and the ethical challenges that they've worked through. One big issue in rural spaces is that isolation. And so, what happens when you don't necessarily have a whole clinical ethics staff that you can turn to at your hospital when you have ethics questions, or colleagues who are facing maybe similar dilemmas? So, creating that space through affinity groups.

And then I'll also add, not as a leader, but as a member, state-based organizations like the Ohio Rural Health Association, being a member through that organization has been a wonderful way to connect and learn about the different issues from the various subcommittees. So, they have a legislation and policy committee.

And then also the RHIhub, staying in contact, staying connected with the folks that are out there. I feel like everybody's so lovely when I see an email come out with all the new information from either [the] Rural Monitor or just published on the website. Folks feel like I can reach out to say, "I think this is such a great topic you're working on. I have some questions." And so, it feels like there's that network and community building as well, kind of asynchronously, which has been lovely.

Devora Shapiro: Yeah. And also, I will say that Dr. Larson and I are in the process of planning what we're calling our Rural Healthcare Summit. So, we've got a rural healthcare ethics summit in the works for 2026 to be held out at Ohio University. And the goal of that is to bring folks together from all over who do rural healthcare ethics and clinicians, physicians, nurses, social workers, hospital executives. The idea is to bring folks together to talk about the issues that they see regularly in their practice, and to start developing recommendations and publications that may be able to assist folks who don't have access to each other because of that concern.

Andrew Nelson: It's really cool to hear about that kind of collaboration. Since you've started tracking this, have you seen differences between rural healthcare ethical issues compared to those in urban settings?

Devora Shapiro: Well, I would say actually that the problem that we're trying to remedy here is that there's not a lot of folks who do rural healthcare ethics that publish a lot. There's not a lot of time for people who are the only person in their area maybe who deals with these issues. A lot of times the healthcare ethics committees that you have at hospitals are just going to be made up of the individual practitioners who are in that area rather than having a dedicated ethicist on staff. And so, there's not a lot of information to utilize at times. And so that's actually one of our goals is to sort of raise awareness of the particular and situated needs of a rural space and the kinds of ethical issues that arise that are really unique to that, that need to be addressed from the lens of someone who's in rural health.

Stephanie Larson: I'll also add, and I think what Dr. Shapiro really underscored is, that idea of community building, and how we need to move away from that monolithic view of rural. So, there's two scholars that we actually recently invited to present for our Rural Bioethics Affinity Group, Dr. Fiona McDonald and Dr. Christie Simpson. And they actually really unpack beautifully some of the challenges with the way that clinical or healthcare ethics is viewed in a broader context, which is this idea that the kind of academic, major academic medical center tends to be the default when we talk about healthcare ethics, when we read scholarship, when we look at books and publications, and there's never really that outright acknowledgement that there's an entire other context that exists with rural.

And when rural is brought up, it's often through what Simpson and McDonald call either "the deficit perspective" or "the rural idyll perspective." This idea that rural is either completely deficit, everything is terrible back there, there's literally nothing, nobody's really doing anything, or it's this idyllic, beautiful space, and it's like old-time medicine and everything is wonderful. And so that really plays into that monolithic view of rural that sometimes I think gets overemphasized both from a more popular culture and media-based perspective, but also sometimes when we're talking in healthcare ethics conversations, when we bring up rural, individuals might automatically think either that deficit or that idyllic perspective. And so, pushing back against that monolithic perspective, even pushing back against monolithic as just a rural and recognizing rurals, plural, that rural healthcare ethics looks a little bit different in different contexts. Whether you're in, say, rural Southwest, or rural Northeast, some of those needs, some of those questions will, will be quite different.

In terms of thinking about scholarships, there's been some really wonderful scholarship that has come out in the early 2000s. There's a really terrific handbook that folks continue to utilize as a resource that came out that was edited by William A. Nelson out of Dartmouth, called The Handbook for Rural Healthcare Ethics. But more contemporary scholarship, more contemporary publications — there is still a bit of a deficit, all to the points that Dr. Shapiro underscored. We're not seeing a lot of publications in a number of ways because of these resource-limiting factors. Publications take time. They're labor-intensive. They require institutional support and resources, and that may not necessarily be possible for a lot of our clinical ethics or healthcare ethics colleagues working in rural spaces.

And so, Dr. Shapiro and I are working on a larger research project to examine what to do, a more in-depth scoping review of the literature that's come out in the last 10 or so years since the previous big publication of rural healthcare ethics literature. And in doing so, what I've noticed is that our global colleagues — so not based in the U.S. but outside of the U.S. — there seems to be a lot of buzz and a lot of conversation about rural healthcare ethics. And so, Dr. McDonald and Dr. Simpson are actually outside of the U.S. They're scholars working in Canada and Australia, but some of the content that they work with, some of the big questions that they have, are quite relevant in thinking about how we frame our issues. So certainly, many differences when we look at a global scale, but also, how can we think about our global scope when we talk about rural, how can we learn from our colleagues who are doing that work outside of the U.S. as much as we can learn here by looking internally at the U.S.

Andrew Nelson: Dr. Shapiro and Dr. Larson, in the presentation that you gave last July entitled, "Surveying the State of Rural Healthcare Ethics in Ohio and Beyond," you talked about the four principles of medical ethics and how they can be applied. Can you tell us what those are and why they're important?

Devora Shapiro: So, the four principles of medical ethics are sort of the common language in medical ethics, and it runs over different professions. So, if you are a nurse, if you're a physician or a healthcare administrator, you'll be familiar with this sort of common language of those four principles. And this allows folks to communicate better and understand each other a little bit better when they're trying to identify and develop those ethical issues, even if they're not an ethicist, right? And so, the four principles, as people generally set them out, which is originally from Beauchamp and Childress actually; that's one of those sources that might be helpful for listeners. But Beauchamp and Childress, initially back in the 20th century, identify these four basic principles that really allow us to center ourselves on unethical conversations.

The first one is the principle of autonomy. And the principle of autonomy is that is one that people frequently think means, "Oh, okay, I have to be concerned about patient autonomy, so I should just do whatever my patient says." But actually, patient autonomy is not just about doing whatever the patient wants to do. It's rather about respecting an individual patient's ability to identify their own values, preferences, and desires in the treatment that they are going to be receiving. But it doesn't really mean that an average person gets to choose whatever they like, because a physician is somebody who's bound by the requirements of being a good provider, right? So, they have to practice good medicine. So sometimes what the physician will understand is that only certain kinds of treatments will be appropriate for a particular patient based on the medical concerns that they have. And so patient autonomy in that sense means respecting the other person, and also sometimes being able to respect them enough to give them a boundary to say, "No, this would not be appropriate medical care, so I cannot provide it to you." And so, telling the truth and explaining things clearly and being trustworthy are also part of demonstrating that respect for patient autonomy and just respect for autonomy generally.

The second principle of medical ethics that we usually identify is beneficence. And what that means is that we're concerned about doing what's best for the patient. So, the patient's good, and the patient's best interests are at the top of the mountain of what we think about as what our goal in practicing medicine will be. And so, a lot of the conversations that have ethical concern are going to be focused around identifying the path forward that best serves the interests of the patient, which may involve having what we would think of as the best medical approach, or it may actually involve being the best approach to serve the interests of the patient in front of us. So some patients may prefer to have less medication in order to be able to experience their lives the way they want to, when in fact, that may lead to a limitation in their lifespan when if they chose more medication, they might actually be medically more stable. But sometimes those medications, for example, are not really, with the side effects, in the best interest of the patient in front of you. And so, when we think about beneficence, we're worried about maximizing the benefit to this patient; not just patients generally, but this one.

Non-maleficence is the third principle of medical ethics. And that's just basically that requirement that physicians, first, do no harm. So, the concern is that we minimize harm whenever possible. So, we often talk about beneficence and non-maleficence together, and about balancing those two things. We want to make sure that we are supporting all those benefits while we're reducing all the harms. And sometimes treatments might have some benefit, but also a lot of harm. If that's the case, then maybe that's not the good treatment to provide in this moment.

The fourth principle of medical ethics is actually the most complex, and that's the principle of justice. And traditionally that was about distribution of medical resources, equity, equality, and access. These days we have a much more robust way of approaching that principle of justice, and it involves making sure that we are supporting the needs of patients within the context of the social world in which they live. And so, it's not just about distribution of resources, it's about thinking critically about the kinds of resources that we may have in different places, and the ways in which our patients may be at a deficit, based on where they are, or maybe they have an advantage with regard to resources. And that's something that's going to come into our understanding of where to provide resources and how best to support patient care in whatever place we happen to be in.

Stephanie Larson: And to add to that beautiful definition, on top of principles, there's also theories, frameworks, and just general different approaches that can be applied that can draw on the principles, but also add their own perspective. And so, two that I want to highlight that can be really useful in thinking about these ethical issues, especially in a rural context. One is disability bioethics, which challenges that monolithic view. So, that seems to be the theme, right? That disability is not necessarily a monolith, in that there are multiple meanings of disability. There's lots of different ways that people experience being embodied or having a certain type of cognition. And so rather than taking a primarily medical or pathological model of disability, disability bioethics would approach these big ethical dilemmas and challenges by thinking about the individual, thinking about the community, thinking about multiple ways that individuals can experience their lives.

Another perspective is narrative ethics. Both of us are from the humanities. And so, coming from that humanistic perspective, thinking about, how do individuals navigate or understand their illness experience or understand what's changing in their lives? And so, I think rural healthcare ethics specifically is such a prime space to be thinking about stories and connection and lived experiences that, especially for providers that are really entrenched in the community and thinking about these new perspectives, new ways of understanding, "Hey, what's at stake? How do we balance the different values at play here and arrive at the best course of action to meet the needs of patients, communities, and the folks that are providing the care?"

Andrew Nelson: We all know that partnerships are a crucial part of ensuring availability and quality of rural healthcare. What are some things that rural healthcare executives, or other leaders, need to know about healthcare ethics, and is what they need to consider different from what clinicians need to consider?

Devora Shapiro: So actually, there are codes of ethics for healthcare professionals in each of the professions. So, a concern for the ethical issues is fundamental to anybody who's going to be working in healthcare. There are basic obligations, regardless of the profession that you're in, that are going to be ethical obligations and need to be aware of the issues that are pertinent to your field and your area of practice. Actually, there's healthcare administration ethics and healthcare executive ethics, and they're actually two separate things. They have different codes and associations, but those ethical concerns are going to be focused around something more like hospital ethics, where their obligation is a fiduciary one. They need to provide resources and make sure they are good stewards of those resources at that higher level, at the more global level, rather than the physician whose job is to focus on that one patient that's in front of them, and their foremost obligation is to that patient. The healthcare administrator is going to be responsible for making sure that their institution has properly gotten all the resources they need. Do they have the medications, the supplies? Do they have the professionals who are ready to come into work? Have they managed those resources appropriately? Are they managing the bed spaces for their patients? These are the kinds of things they have to worry about, and there's going to be specific ethical obligations based on that large-scale management of resources. And it's a very different kind of set of concerns than the physicians will have potentially.

Stephanie Larson: I think speaking of resources, I think it's also important for leaders, these healthcare executives and leaders to kind of just have a general understanding of ethics; what ethics is and what ethics isn't. This idea that ethics isn't necessarily an ethics police, ethics isn't coming in and saying what to do. Ethics isn't legal or policy. However, ethics can inform both of those domains, and the idea that even if folks in that rural healthcare setting are not using the word "ethics" in particular, they are still encountering ethical issues. Ethics is happening every day in the healthcare setting, regardless of whether it's acknowledged or not. And I would hope that healthcare executives and other leaders would understand the importance of building clinical and community capacity for healthcare ethics as a value to the institution, to the clinic, to the healthcare center, both from that monetary and cost-saving sense, but also from a supporting kind of clinician well-being and promoting better relationships between clinicians and patients. So, from that practical side, welcoming ethics education, welcoming ethics training, support for ethics work to be done, to both promote all of these benefits as well.

Andrew Nelson: Can you talk about how socioeconomic factors can influence ethical decision making?

Devora Shapiro: So, we live in a world that has insurance, and insurance of course is a private business. And insurance companies in a lot of ways will potentially limit the kinds of treatments that individuals may receive, based on the economics of the distribution of those resources and the ways that the insurance companies need to manage their budgets. Healthcare institutions such as hospitals as well, will potentially have restrictions and concerns about, for example, Medicare and Medicaid reimbursement. And so, the number of patients they can take who are uninsured, or the number of patients they can take who are on Medicaid, will be limited potentially by the economic situation that that institution finds itself in. And as I just mentioned, the institution needs to make sure that they stay solvent, right?

That's part of making sure that they can serve the needs, but they also need to make sure that they're providing care for the community. And what we get concerned about at times is potentially this belief that we're going to have to police those resources as well, and maybe make decisions about who deserves the treatment versus who doesn't, based on who might have insurance, versus those who don't. But in an ideal world, and in a just world, we would want to make sure that individuals who need different kinds of medical treatments will receive those, and that we would have a good amount of management to make it so that we really can serve the healthcare needs of patients regardless of which of these buckets they fall into, whether private insurance, or Medicaid, or something else.

And so socioeconomic concerns are everywhere in healthcare. They are infused at every level. Individuals who have less resources also have less access. So socioeconomic concerns are in there. Individuals who live in low-resourced areas will have low-resource hospitals. And so that's a socioeconomic issue that has ethical implications. And of course, as I mentioned, the ability for individuals to access goods provided by insurance companies, or through Medicaid programs, through the state and federal government. That's another way in which those socioeconomic issues are impacting and develop with ethical issues.

Stephanie Larson: On the individual level as well, the patient and clinician perspective, and this idea of when you are thinking through these dilemmas, acknowledging socioeconomic factors as an influential element in deciding what decisions or what potential outcomes are on the table or even available is really important. And I think it's magnified in rural spaces where you have both the socioeconomic and other resource limitations, that if you are somebody working in a big urban area that has three or four hospitals all really closely situated, if somebody has an emergency, they need to go to another hospital. That has a possibility; that is an open possibility. But in rural spaces, as you're dealing with these ethical dilemmas, is recognizing that we have these values on the table, but we're also constrained by a number of factors that are going to help us determine what is even possible in this situation.

And acknowledging those socioeconomic factors, both from the patient's side, getting to understand the patient, their background, their family, maybe what is constraining them or those possibilities. And then also from the clinical side, how do we engage creativity? How do we have that deeper connection of understanding the people that we're serving? And how can we promote flourishing? How can we arrive at the best possible outcome in a really creative way, even when we are constrained by these larger socioeconomic factors, just us on the ground, from the patient and clinician side of things.

Devora Shapiro: The one thing that I just wanted to reiterate is that the physician's obligation is to the patient and not to manage resources in that way, but in rural spaces sometimes, the physician may be also the administrator in some sense of the clinic, or maybe one of those, the only people around to administer and to manage the resources. And so, while in an urban setting, you might have a very clear distinction between the physician and their patient and their relationship and just treating the patient and then the hospital administrators on the other side. In rural areas, there's a lot of overlap of roles. And so, there's always going to be the concern to make sure that the physician is really worried just about their patient and doesn't put themselves in the position to try to manage those resources when they have a patient in front of them; that we can make sure that we have that on a separate scale, right? So that's a separate conversation. We're going to make sure that everybody has the resources they need, so that when the patient comes in, we don't have to think about resource distribution, we can just think about serving the needs of that patient individually.

Stephanie Larson: I'll just add two elements, and I think looking back at COVID, at this unprecedented global pandemic, and how really difficult choices had to be made, focusing on elements like transparency and how decisions are made, ensuring that equity is part of that calculus. So, if there is some kind of limitation from perhaps leadership, or there is a resource allocation question, it's incredibly clear how that decision was made, why it was made, what was the justification there. And I don't necessarily think that's a rural-specific issue. I think it's across the board, but recognizing the complexity of culture and relationships in rural settings, I think further enhances how important transparency is. I think also inviting the most affected members of the community, who will be most affected by these decisions, to have a seat at the table, to have these conversations.

I think one of the interesting spaces in some rural settings is that you can have that outreach. You have that community-based medicine where you are working side by side with folks in the faith community, folks who are health practitioners out doing community-based work and saying, "So how do we have this conversation? How do we think about these big questions?" And this is where that capacity building, not just limited to the folks that are working in that healthcare setting, but how can we help folks in the community feel more confident addressing ethical issues in their daily lives, in their healthcare decision-making, and create a more robust set of connection to make folks feel more empowered at the end of the day when faced with these really big and complex challenges.

Andrew Nelson: Earlier we talked about the four principles of medical ethics. How do you approach informed consent in rural communities, especially where patients may have limited health literacy? Does that primarily have to do with autonomy?

Devora Shapiro: So, it's a combination of two things. So, for example, when I teach my students about pre-surgical informed consent, I bring up two principles, and that's autonomy and beneficence. So, there are times when your patient will not be able to fully understand the highly technical nature of surgeries. And in those instances, you have to identify the kinds of things that would be of benefit for your patient, based on what you understand about them. But you also still need to do what we call shared decision-making, where you support your patient and find ways, and it's the physician's job to do this, to explain and communicate the important technical features of what they're proposing to do so that the patient can understand it. And part of recognizing that other people think about things differently and understand the world slightly differently is realizing that it's actually your job to meet them where they understand.

Autonomy is something that is part of informed consent. It's usually the thing that people think of first, but also beneficence, making sure that you are supporting the best interests of your patient. We don't want to suppose that you're supposed to walk in the room and give them all the technical information and say, "Well, see, I respected you. I gave you everything." That's not respect. That's sort of taking off the responsibility from yourself and giving it onto the patient when in fact, what you need to do is take the time and the responsibility to identify ways to communicate clearly so that your patient can understand in ways that they can identify what's to their benefit and what's not. And so that's how that autonomy and beneficence go together. And so, I'm used to teaching all about informed consent and teaching my students. But Dr. Larson is actually sort of on the ground with the job of helping people fill out those advanced directives, where you're really thinking about the consenting process. So, Dr. Larson?

Stephanie Larson: Absolutely. So, we know from research and data that rural communities have lower rates of healthcare power of attorney, or just blanket advance directives. And so sometimes folks will be in situations where they can't make their own decisions, whether they've encountered some kind of accident or they are in a long-term context, for example, they may have some type of cognitive disability that prevents them from fully understanding. So, to Dr. Shapiro's point, when she explained how you work in a partnership with your patient to help them understand this complex neurosurgery so they can understand the risk and the benefits and decide whether to pursue that, some folks cannot get up to that level no matter the amount of information that is shared or communicated. They need additional supports, additional shared decision-making or help when it comes to having these big decisions.

And so healthcare power of attorney is one way for individuals to share who they want to be involved in their decision-making process. And what's important to think about is in rural context, where you have a really deep relationship between the clinicians and the patients and the community, individuals who know this patient makes decisions with this loved one, or this friend or this grandparent. That type of relationship does not easily translate to other healthcare settings that may not be in a rural context. And so, we know folks in rural context may encounter emergencies, and they do need to transfer to additional healthcare settings where they get care by providers who've never met them before. And so, a healthcare power of attorney and advance directive is a way for individuals in rural spaces to make their wishes known, and to try to communicate, try to replicate that relationship that has not been built up over years, right? This person's just being seen in this emergent situation. And so that's also part of that informed consent process. It's, "Who do you want at the bedside? Who do you want with you?" And how do we make sure individuals who are in these rural spaces who have their person, their trusted person, can replicate that when they find themselves outside of that rural context?

Andrew Nelson: Have you found that there are ethical dilemmas that crop up when patients refuse treatment or want to follow alternative practices?

Devora Shapiro: Ethics consult number one, like most frequent, is, "Patient doesn't want treatment. What do we do?" So, both Dr. Larson and I have consulted on issues like that quite a bit. If a capacitated patient, somebody who really has the ability to make decisions, is saying they don't want treatment, then you simply listen to them. You can ask them, however, why it is they don't want treatment. So a lot of times that refusal of treatment is something that can be resolved with a good conversation. Sometimes patients may have reasons that are based on a mistaken understanding of something, or maybe what they're really trying to say is that they don't want this particular treatment in this way. But in fact, two days from now, they might be like, "Oh yeah, it's fine."

You have to have the conversation. So, if a patient is refusing treatment, the first job is to try to figure out, "Well, what's going on?" And the only way you can do that is by having a conversation with your patient; again, respecting that patient's autonomy. It means you respect them enough to listen to them. And so that's one thing that you might think is relevant there, but ultimately when you've gone through all those conversations and your patient says, "No, I don't want this," the physician's job is to believe them, and to respect that choice. In fact, this is one of those places where ethics and legal do overlap. If a patient who is capacitated refuses a treatment, then it is a requirement that you not push that on them.

However, there's the entire world of what happens when an incapacitated patient refuses a treatment. And that's much more complex, and it also requires having a conversation with your patient. But there are times where a patient does not really have the capacity at that time to give a good decision. And, for whatever reason, there are so many different ways that can come about. And when it comes down to it, there are a lot of different ways to approach that. [The] concern is sometimes after careful consideration, there may be a time-limited trial of treatment in order to get them to a state where they can make decisions again. Or maybe, there's going to be some other sort of solution. So that's much more complex.

But when you have a capacitated patient who refuses a treatment, you talk to them. And if they still say no, then you say, "Okay, alright, well we can talk about it again next week, or whatever the next appropriate time is." Dr. Larson, do you want to add?

Stephanie Larson: Yeah, I think there's also some space to focus, especially in rural spaces on the clinicians in these cases. So, to Dr. Shapiro's point, when we honor a patient's wishes, a capacitated patient's wishes, that doesn't necessarily negate the harm that may come from that person's decision. They may decide not to seek care, and eventually that person is going to begin to crash, or they're going to have an emergent situation where they need very significant care. And so, recognizing even though we are expecting an individual's choice, a capacitated individual's choice, how do we then care for the clinicians, the nurses, the, the social workers, the physicians, the other NPs [nurse practitioners] and PAs [physician assistants] who would be on that other end who saw that patient, who respected that patient's wishes, who [are] now seeing this patient crashing or seeing this patient experiencing really acute distress. And so how do we provide care? How do we try to prevent or mitigate burnout and distress that will be experienced? And so, that's also part of healthcare ethics. It's recognizing both, "how do we care for our patients," but also, "how do we care for the people on the other side of the bed?" How do we care for the family members, when maybe that deep conversation can't resolve that complex issue, that individual still is choosing one path, that alternative treatment or to refuse a particular care. How do we care for the clinicians and how do we make sure we're prepared? We have a plan in place for when that patient will inevitably need care because of the decision they've made.

Andrew Nelson: Thank you for taking the time to talk today. Any final thoughts?

Stephanie Larson: A note of encouragement to folks listening… I think healthcare ethics can feel very academic. Sometimes it can feel a little scary. It can feel like, "What exactly is this thing that we're being confronted with?" and to just encourage individuals who are listening who are like, "Well, I'm not a philosopher. I'm a nurse, or I'm a physician's associate, or I'm a physician. I don't know any of this stuff." My bread-and-butter is clinical work. And to just encourage folks that you see ethical issues daily, oftentimes you are dealing with them in the moment. And what we're hoping to accomplish and do here is just to give folks, like Dr. Shapiro said, the tools, the resources, some of the language to name what they're seeing in the clinic every day. So, don't let ethics and healthcare ethics specifically make anybody run or think that it's only the domain of philosophers or folks in the kind of academic spaces. It's really for everybody. And there's so much benefit to being able to have these resources in this language. So, we welcome everybody into our rural healthcare ethics community.

Andrew Nelson: You've been listening to Exploring Rural Health, a podcast from RHIhub. In this episode, we spoke with Dr. Stephanie Larson, a lecturer in the English department at Case Western Reserve University, and an Associate with the Institute of Ethics at the University of New Mexico Health Sciences Center, as well as Dr. Devora Shapiro, Associate Professor of Medical Ethics at the Ohio University Heritage College of Osteopathic Medicine. Look in our show notes for more information about their work and visit ruralhealthinfo.org for all things pertaining to rural health.