A Question of Ethics:
Talking About Disability: Suffering, Quality of Life and Value Distinctions

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.

Ian Wolfe: Welcome everyone to a question of ethics. I am your host, Ian Wolfe. Today we’re going to be talking about disability ethics and our guest today is Dr. Jaime Konerman-Sease. Dr. Konerman-Sease is a clinical ethics assistant professor at the University of Minnesota Center for Bioethics, and she’s a clinical ethicist at M Health Fairview system. She obtained her PhD in health care ethics and theology at St. Louis University where she studied disability ethics. And Jaime, I’d like you to tell us what was your doctoral work on at St. Louis University? Because it always fascinates me.

Jaime Konerman-Sease: Yeah, it’s absolutely out of the box I will say. So my doctoral work is on disability ethics, chronic illness, religion, and Jane Austen. So I look to Jane Austen sort of as a figure to explore how we can think about relationships. So there’s this little quote in McIntyre that says, Jane Austen is the last virtue ethicist. I just take that up and say, what if we applied it? Let’s try it. Let’s see what she can tell us about what it means to live the good life when you have a chronic illness.

Ian Wolfe: Well, that sounds really interesting. I’m hopefully waiting for the book to come out on your doctoral work in Jane Austen and chronic illness. Yeah, keep up the good vibes.

Well, disability ethics I think is something really important to pediatrics, particular when talking with families, either when families are presented with illnesses diagnosed prenatally, postnatally acquired illnesses and injuries throughout life and it’s a complicated space to discuss. So let’s dive into a little bit of it. What is disability ethics?

Jaime Konerman-Sease: Such a great place to start, right, the very definition. So I would say that there’s no really one universal way to understand disability. It’s such a wide umbrella concept, but really we can think about disability ethics as the moral understanding that arises out of the experience of being disabled or the experience of impairment. And we can sort of maybe compare that or hold that together with the ethics of disability, which is its own thing, which is how we as a society, as people who do not have disabilities think about, talk about and behave towards disabled people. So these are two both related things, but disability ethics really centers the experience of being disabled of impairment.

Ian Wolfe: How society and medicine has interacted with disability and people who identify as disabled has really changed in the last, I would say, century. Can you give us a practical idea of how disability ethics or how we think about disability ethics has interacted with health care and affected how we look at disability today?

Jaime Konerman-Sease: We see in the last century disability, society’s thinking about disability going from people who don’t really have a voice to people who do have a voice. So you see sort of a gaining of agency and humanity over the last 100 years. And of course I’m simplifying it, there’s so much more context, it’s so complex. But a really good way to think about disability and medicine is by zooming in on the history of trisomy 21 or Down Syndrome and specifically looking at the life expectancy of the change over the last 100 years. So part of this is due to medical advances, but also part of it is due to attitudes and attitudes towards disability and attitudes towards something called quality of life, which I think we’ll probably talk about a lot later. I’ll read through this history. So in 1930, the life expectancy for somebody with Down syndrome was nine years old in 1946, it was 12 years old. In 1970 it was 25. In 1983 it was still 25. In 1997 it rose to 49 and in 2006 rose to 60. So we see the history over the last 100 years going from people with Down syndrome, surviving childhood to people with Down syndrome, surviving to be AARP members. So that’s a significant, significant change. And as I said, part of that is due to the increase in technological advances, but also part of it is due to the willingness to intervene on people with Down syndrome to correct things like heart defects that do arise and can be more common in people with Trisomy 21. And it really does highlight how in the past, people with Down syndrome were sort of believed to have a life defined by suffering, defined by poor quality of life, that the presence of abnormality itself in the chromosomes, right, the presence of Trisomy 21 was enough to indicate that life was not worth pursuing or living for these particular individuals.

And through the efforts of people with Down syndrome and their caregivers, that narrative really changed. They’ve completely transformed that narrative and said, actually what makes a life worth living is not your IQ level, it’s not your ability to have muscle tone. It’s your ability to have and form and live in good relationships, which really is kind of a quality for flourishing for all people. We sort of shift and realize that having friends, having supportive family members is really kind of all we need to enjoy life. So we’re shifting away from this ability focused model to a relational focused model to understand what it means to have a good quality of life and disability is really what helps us do that.

Ian Wolfe: Really interesting. And so it sounds like around the eighties something shifted in how we look at children with Trisomy 21 or Down syndrome.

Jaime Konerman-Sease: That’s absolutely right. It was the civil rights movement actually in the sixties and seventies. And we’re seeing that the implications of the disability activists, a lot of which came out of Berkeley, you can watch amazing documentaries. Crip Camp on Netflix would be a great one to start with about this disability rights movement and that really did change how people thought and how people wanted to engage with how society at large engaged with people with disabilities. It started the change, let’s say.

Ian Wolfe: This seems very similar to what we deal with today, and I think there’s a lot of discussion in ethics and pediatrics around Trisomy 13 and 18 where it was considered and probably is still taught in many medical schools and nursing schools that it is a lethal diagnosis, meaning that they’re born and they die. And of course if we don’t intervene, of course that is true, but it’s found that if we do intervene, many of them do live. Although it is still a very difficult diagnosis and certainly many do die, but it’s not the case that it is lethal from an argument standpoint. So for Trisomy 13 and 18, there’s both a combination of the fact that we have these therapies that can be utilized, but also it was a big social aspect of how we considered them. And so if you teach all clinicians that this diagnosis is lethal, then nobody intervenes, and then thus it’s a self-fulfilling prophecy that it is in fact lethal. And of course that’s not the case because we have Trisomy 13 and 18 children living some for several years, some shorter, but it’s certainly not lethal.

Jaime Konerman-Sease: Yeah, that’s absolutely right. And one of the ways that disability ethicists are trying to reframe the narrative about something like what has previously been talked about as a lethal diagnosis is really emphasizing how all diagnoses exist on a spectrum. Trisomy 21 exists on a spectrum just the same as Trisomy 18 and 13 exist on a spectrum. So simply the presence of a chromosomal abnormality doesn’t indicate how severe the kind of medical issues that underlie or can be in constellation with that abnormality might be. So it really does promote something like a case by case review of these kinds of diagnoses as they arise.

Ian Wolfe: It really seems like it’s patient specific or child specific, and how much of the comorbidities of that diagnosis are affecting their overall health. And some might have significant comorbidities where others may have few. And you mentioned quality of life and suffering, and that’s a concept that’s very fraught, I would say. How do we think about quality of life and suffering when it comes to disability?

Jaime Konerman-Sease: It’s such an important thing to center when we’re talking about disability ethics in medicine is really critically examining how we’re thinking about quality of life. And I would say that the average American might define quality of life as my ability to do things, kind of like what can I get done? How productive can I be? How much fun can I have? How many activities and adventures can I go on? But disability, and if we center the experience of disability, I think we can get at a more perhaps underlying or maybe even a more true version of quality of life. What is quality of life, which is the ability to sort of live according to your goals and values. And in ethics, this is a very common thing that we hear, right? This is the very definition of autonomy, the ability for one to live according to goals and values.

But quality of life is a little bit more nuanced because it doesn’t necessarily depend on me as an individual. But let’s go to the World Health definition. So the World Health Organization defines quality of life as an individual’s perception of their position in life, in the context of the culture and the value and systems in which they live and in relation to their goals, expectations, standards and concerns. So as ethicists, we talk about this definition all the time, individuals get to determine their own goals and values in life. They get to determine what kind of life is worth living. The medical team doesn’t necessarily get to do that. So when it comes to children, when it comes to pediatric patients, that’s the question is, who gets to decide what kind of life is worth living? And here in the United States, we actually have a really long history of parents making that decision and a really long history of protecting parents, making that decision to some extent, right? Parents get to direct what goals and values their children have until their children are able to decide for themselves. So parents determine what kind of quality of life to pursue. And I guess I might say the government definitely doesn’t decide, we should probably say that out loud. The government does not have standards for quality of life. They have standards for instances of negligence and harm when the government intervenes based on harm, but they don’t have a floor on which everyone must stand on.

Ian Wolfe: So they don’t decide this isn’t the quality of life that you’re doing. They would intervene where a vulnerable citizen is being subject to harm through abuse or neglect. And you mentioned something a little bit in pediatric decision making of, in pediatrics the child cannot tell us what their values are often when they’re younger. And so the question then becomes who gets to define what a quality of life is for that child? And this is something that leads to a lot of values and positions, which I think you brought up when a clinician might come in and say, that’s not a quality of life, or this is not something we do because there’s no quality of life there. And what you’ve said that seems to be problematic.

Jaime Konerman-Sease: It is problematic. Frankly, physicians, clinicians in large do not get to make quality of life judgments. That’s something that we carve out really specifically in the adult sphere. And it applies to the pediatric sphere as well. Families, communities and patients make quality of life judgments. Not only is this due to that bioethics, theoretical commitment to respect for persons, we’ve had that since the 1970s, since the Belmont Report, but it’s also because clinicians are notoriously bad at actually predicting how patients really feel about their quality of life and we have data that shows this, that physicians really can’t imagine what quality of life might be outside of this framework of perfect functioning, good functioning of the body. That they can’t imagine what kind of life would be worth living or not living. And in the medical field, historically, we’ve really imagined that life with disability is actually worse than people who live with those disabilities claim that it is.

Ian Wolfe: So you’re talking about the disability paradox here.

Jaime Konerman-Sease: This is the disability paradox. So there’s a lot of studies out there, and it’s really fascinating that people with disabilities will rate their quality of life higher than the providers who care for them. One study is from Lisa Iezzoni, I think she’s out of Boston potentially. But she found in a study of physicians, it was a significant number of physicians, 82% reported that people with significant disability have worse quality of life than non-disabled people. And this was not shared by those people with significant disabilities. They did not see their quality of life as worse than non-disabled people.

Ian Wolfe: So physicians were rating people’s quality of life worse than the actual people were. Is that it?

Jaime Konerman-Sease: Yes.

Ian Wolfe: So clinicians in general, if you polled us, would it gave us a case scenario. We would rate the quality of life very poor, but those same people we were rating would rate their quality of life significantly higher. And so that’s the disability paradox, right, where we tend to apply our own values based on an ableist body towards others of thinking about ourselves in that position potentially.

Jaime Konerman-Sease: That’s absolutely right. And we can see that when we look back on the history of life expectancy with Down syndrome. The time when Down syndrome life expectancy was relatively low was a time when physicians really did direct medical care almost exclusively, and it was a large culture of paternalism. As medicine also shifted more towards patient directed care, we also started listening to communities and families who live with these disabilities. And it reveals this history, this pattern of always devaluing the lives of disabled people and mis-imagining quality of life.

Ian Wolfe: So if we want to look to parents then to figure out how they apply their values to the medical facts, to think about what quality of life means from their perception and how they value suffering or how they consider something suffering or not suffering. And so there is limitations as you pointed out. So we want to look to parents to determine what quality of life might be. And the flip side, there is limitations to what parents might consider not a quality of life. So if a child was born missing a leg but was otherwise fine, and parents just said, this isn’t a quality of life for my child, there’s no licensing interventions to withdraw because they’re otherwise healthy. That shifts into what you said earlier about the state’s interest and vulnerable citizens where it would be harm or neglect if they decided to not do any sort of medical interventions at that point.

Jaime Konerman-Sease: So there’s a shift now patients and families get determined that quality of life, but they only really get to make choices between medically appropriate options. The medical appropriateness of a particular pathway. And decision-making is still really critical in decision making about disabled patients when families and doctors and clinicians are working together to make decisions about a disabled patient who can’t speak for themselves. So there’s this tension. You’re exactly right, a tension between a realistic picture and a tension between allowing families to make decisions based on their values and that tension between allowing families to make appropriate decisions and a tension between preventing negligence and harm.

Ian Wolfe: So you’re talking about shared decision making, which is a foundation of pediatrics. And there’s several articles which I won’t cite here that go into that. But the way shared decision making should work is that the clinicians provide the medical facts, provide medically appropriate options when there are more than one medically appropriate option, and parents can apply their values to those medically appropriate options going forward. And so you spoke of this tension, and certainly of course as we work in ethics, we often come across situations where it’s not about whether somebody’s doing something unethical, it’s rather it’s more of a conflict between ethical tensions. And so one of the tensions that comes up in shared decision making around disability is how do we counsel families with the reality of the condition, the outlook on what they will be able to do later on prediction prognostication. So one of the tensions that comes up in shared decision making in pediatrics then is regarding the pediatricians needing to counsel families and give realistic pictures that inherently bring up these concepts of quality of life. Can you talk about that tension where clinicians want to give information and want to give it in a real picture of what the medical facts are, but sometimes that might come off as maybe seemingly negative towards potential disabilities?

Jaime Konerman-Sease: It’s a really difficult tension because clinicians have obligations to act in the best interest of the patient and to prevent harm. Those are real obligations that clinicians have, and families have an obligation to represent their kids’ interest, right? And a lot of families are like survival, life is the number one interest of my child. So that’s what we will pursue and it can create an environment where questions of quality of life can start to drive the conversation. And that’s what as disability ethicists would ask, that we sort of suspend a little bit from de-center quality of life from the conversation. Rather, when we’re engaging in questions of intervening on significant disability, one of the things clinicians should do is focus on the realistic ability for medical interventions to repair or address the problem at hand. So say you have a infant with Trisomy 18 and they have a VSD and they need heart repair.

So as we look at this particular patient, there’s concerns about quality of life, but the family has made it clear that survival is their goal. They want to pursue survival for this particular child. And so then the medical team with that goal in mind should take the position of what does it mean to realistically repair this particular problem with this particular organ? How do we address that? And we can still explore that within the constellation of potentially all the problems, say they have a hernia and a VSD and a problem with the trachea. So there’s multiple problems that can lead to really complex medical decisions. It can lead to a position where we’re not really sure what to do, we’re not really sure how to proceed. And in moments when the clinical team has relatively not have clinical clarity on how to pursue, we leave that up to what we call the zone of parental discretion. Parents are the ones who get to decide in moments when it’s not really clear how a particular medical intervention will work, if it will be successful, the risks are potentially high, but we’re unsure if it will actually lead to the outcome that we’re looking for.

Ian Wolfe: So if there’s uncertainty around success, potentially predicted high morbidity, potential mortality, what uncertain about that and there’s potential benefits, we put that to parents. Whereas if there was high clinical certainty that the likely outcome was say, dying in the operation in this case, then it wouldn’t be a medically appropriate option. And it reminds me of something in, it was a 2018 article in New England Journal by one of my program directors for fellowship. And he makes the comment in there that when reasonable people disagree, all options are legal. We empower parents to make the decision they feel is best.

Jaime Konerman-Sease: That is absolutely right. That’s absolutely right. And so I want to be really clear that a disability informed perspective doesn’t endorse always intervening. It also doesn’t endorse never intervening. It really promote a perspective of exploring case by case to see how medical technologies can improve the functioning of anatomical, biological, physiological functioning of a particular person using those when appropriate. And if it’s not appropriate, if it will truly lead to bad outcomes, death at the operating table being one of them, we don’t have to pursue it. It’s not ethically obligated. It’s not ableist to not pursue it if it will lead to certain harm.

Ian Wolfe: Right. One other concept that I’d like to get into because I think it is so important to these conversations is the complicated concept of suffering. It comes up a lot. And often what I say as an ethicist is most of the things we do in the hospital cause suffering in some version or another that we tolerate for some potential benefit. And sometimes that’s a certain benefit and sometimes it’s an unclear benefit. And certainly we want to mitigate discomfort, distress, whether we call that suffering or not. But then suffering comes up in other different ways. How do we navigate suffering in terms of when we’re talking about disabilities?

Jaime Konerman-Sease: That’s absolutely right. So I guess I want to make clear that many people from the disability ethics community would say suffering first and foremost is not relegated only to disability. It’s part of the human experience. All humans experience suffering. People with disabilities don’t have the sort of market share of suffering. Therefore, living with disability doesn’t always mean you’re going to suffer. As people know, suffering exists in the world, it’s something that we all encounter and all have to wrestle with. When we’re talking about suffering, we need to parse out and really think critically about our expectations of things like quality of life. What do you do to be happy? What do you need to be happy? From the question of pain. If there is pain, that’s something that we can address through medical interventions. And pediatric palliative care is absolutely incredible at addressing questions of pain.

That’s something that’s been well established. So what’s left then is this existential suffering question. What do we do about the suffering of a baby who doesn’t do anything, say, right? They’re sedated. They have so many interventions keeping them alive that they’re not engaging, they’re not interacting, they’re not acting like a baby. And we might think, oh, they’re suffering. They’re not able to engage in these things that we think babies should do. They’re not able to squeeze a finger, they’re not able to blink or make eye contact. And I would say that it’s important to explore that and really think, okay, where is this idea of what babies should do? That to me is a ability question. What are babies able to do and how does ability lead to something like quality of life? So if it’s a question of this particular child’s pain cannot be controlled, that’s a really appropriate question of suffering for the medical team to ask and to engage with.

If it’s a question of this child isn’t acting like a child, this child isn’t able to live the life that a child should live, that’s a quality of life question. And that’s something that as health care workers, we sort of have to suspend a little bit because it’s our job to support and engage with, and embrace a family’s idea of quality of life and to provide the interventions that we can to support that. Another thing about suffering that we should consider as clinicians is that disability does not equate to suffering a disease. That being disabled does not equate to suffering and pain. But disease on the other hand, can be associated with suffering and pain. So it really is possible to be disabled and healthy, and it’s possible to have a disability and be free of disease. And so as clinicians, we should be focusing on how can we mitigate disease and illness in this particular individual, noticing that potentially something like a chromosomal abnormality might impact that, but we can still address the disease itself focusing on disease, that disease and the illness itself.

Ian Wolfe: Thanks. That’s a really important distinction. I think especially as we often look to our charts and look at the diagnosis list, right? And in a diagnosis that of Trisomy 21 doesn’t indicate necessarily disease, but it’s important to have on there maybe because it informs then other aspects of the medical care. But we should be careful not to conflate that disability with a disease that needs to be treated.

Jaime Konerman-Sease: That’s absolutely right.

Ian Wolfe: So in those situations, it’s really we need to set aside our personal values because we risk putting those on another and look to our professional obligations. Have we controlled pain? What are we doing for comfort? Those kinds of things. And so we don’t put our own personal values into those decisions that parents have made.

Jaime Konerman-Sease: And it’s really appropriate to center that disability paradox here and to think that at least what we know about in adults and people who can speak for themselves, people who live with significant disability would rate their quality of life really high, whereas their care providers wouldn’t, and I think it’s appropriate to extend that to children as well. We don’t necessarily know how the experience of neonatal intensive care unit feels for that particular child. We know how it feels for us and our bodily experience, but we don’t necessarily know how it feels for that particular child. So there’s a lot of ways that we can support flourishing for that particular body in all of its ways of ability, but we don’t necessarily have the ability to determine if this particular child has a certain quality of life that deserves further medical intervention or not.

Ian Wolfe: And even what I find interesting is just the idea of what do we go through for what outcome? And I often try to use metaphors in practice to get people to think about this. And because undergoing chemotherapy undergoing intensive care treatments for neonates, all these things are hard and it’s in some ways is suffering in many different concepts.

Jaime Konerman-Sease: Providers can have an approach of humility towards disability, and that’s a really helpful framework, both knowing the history of medicine. Medicine hasn’t always been very humble about disability. In fact, medicine has been very quick to talk about disability. But the disability paradox shows us that a position of humility from a clinical perspective might be the best approach to have for now, especially while there’s so many diagnoses that we don’t know what the outcome will be, where there’s so much uncertainty about how medical interventions will impact a particular child with a chromosomal abnormality say. So by really interrogating one, what is my perspective on quality of life and disability? How am I thinking about disability? What do I think about quality of life? Really bringing that to the forefront, simply naming that can help us as clinicians make space for alternative perspectives to arise. That family who has a different perspective, who says life is valuable at all ability levels. I don’t care if it takes a year, two years for my kid to get out of the nicu. I don’t care what their IQ level is, they matter to me, and we can make space for these various perspectives that come out of that. The second thing that disability humility really requires is really clear communication. Clearly communicating about what medicine can and cannot do for a particular child, for a particular patient. That’s the basis of shared decision making. How can we as the clinical team support this family? It’s clearly communicating, it’s giving realistic outcomes and being clear when we’re uncertain. And then finally, the third thing is allowing people with disabilities to have authority about their lives. And this is easier in the adult sphere than the pediatric sphere, but we can still learn from adults. We can learn from the adults to inform us about what it might mean to support pediatric patients with disabilities. Because all of those adults were once children, right? And they were probably heavily medicalized as children. And so they do have an experience of what it would be like to live through significant medical intervention for a particular end.

Ian Wolfe: Well, thanks, Jaime. Those are really good takeaways on how pediatricians and pediatric clinicians can navigate through disability ethics by practicing disability humility, by first recognizing how they think about disability from their own perspective, how they think about it from a medical perspective, thinking about then how we communicate clearly with families, and then also recognizing the authority of parents, or wanting to be more curious about how families apply their values to the particular diagnosis and prognosis, and then obtaining their goals around that particular patient. Well, thank you so much for being here, Jaime. I’ve learned a ton today as always, and I hope our listeners have learned a ton as well.

Jaime Konerman-Sease: Thanks, Ian. It’s been great.

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