“Social Justice Physician Responsibility & Resource Allocation” by Sadeth Sayeed for OPENPediatrics

Social Justice, Physician Responsibility and
Resource Allocation in the NICU, by Dr. Sadath Sayeed. Hello, my name is Sadath Sayeed. I’m an Assistant
Professor for Global Health and Social Medicine at Harvard Medical School, and I’m an Attending
Neonatologist at Boston Children’s Hospital. And I’m going to speak to you today about
the subject of scarce resource allocation and social justice. Introduction. This is a very broad subject with really large
ethical and moral concerns, and also ones that impact the daily lives of both patients
and practitioners, institutions and systems. So for dealing with a subject matter like
this, it has to be introductory at this level. And my goal today will be just to highlight
a few key issues by case illustration, and I’m going to discuss a framework or two for
ethical analysis. I hope to highlight some tensions that are inherent when you’re talking
about things like scarce resources and social justice. And I’m going to try my best to have
some applicability to the neonatal medicine practice. Case Scenario. So let’s start with a case to get a sense
of an issue in resource allocation. And I’m going to start with a case where I think the
conditions of scarcity are real, certainly in this day and age. So the case is as follows.
Imagine that there are four patients in need of a liver transplant. So the scarce resource
is, obviously, the liver. One is available. And it a match for the following four patients. The first patient is a 65-year-old patient
with chronic Hepatitis C. He is in the ICU. And he’s very sick, and very, very close to
death, meaning that he’s within a few days, maybe a week or two on maximal life support.
So very sick and desperately in need of the transplant. The next patient is a 45-year-old
patient, female, who has cirrhosis of the liver due to alcoholism. And she’s in a different degree of illness
at this point. She probably has several months to live based on her current medical status.
But definitely is in the last stages of her life, overall, if she doesn’t receive the
transplant. The next patient is a 30-year-old physician who suddenly developed acute liver
failure from a Hepatitis A infection while doing humanitarian work abroad. And under
the current situation, this patient has a few weeks based on his current status to live,
if he doesn’t get a liver transplant. And the last patient to consider is a four-month-old,
so a baby, with neonatal congenital hemochromatosis. And this is a baby who is currently in the
ICU. And based on how this little girl is doing right now, probably has several weeks
to months to live without a transplant. So those are your for patients. And you can think
about what could be the operating rules to decide which of these four very needy patients
should get a scarce resource like a liver in order to save their life. Resource Allocation. So how do we decide this problem? Well, you
can imagine that there are a lot of different ideas and principles that have been thrown
out there. And almost all of these have been argued for at some point or the other based
on the rationale that seems compelling. So let me just share with you a few of the ideas
that have been tossed around to deal with this allocation problem. The first would be just to do a lottery, meaning
you just put their names in a hat and you put a number on each name and you pick out
the one and it’s strictly everybody has an equal chance of being the one who receives
the liver. That sounds fair to many people. And it seems like there’s a fairness principle
that might be elevated if we choose that route. Another way to decide would be first come,
first serve, so who was the first one in the hospital, and therefore, they get the first
right of the transplant. And while this may make sense in a more commercial setting, you’re
going to a concert and it’s going to be a sold out concert and the person who gets up
the earliest to wait in line has somehow earned the right to get the first ticket or the best
seat, doesn’t probably carry as much resonance in the context of a lifesaving therapy like
a liver. And so while this has been often suggested as a rationale, it probably lacks
some of the ethical backbone that we’re looking for in a situation like this. How about the most in need– in other words,
the sickest patient? So this is obviously something that does carry resonance in the
context of providing medical care. We often think that the patient who is the sickest
deserves the most attention and the quickest access to treatment in order to save their
life. There’s obviously some good reasons for thinking that way, because if we can save
a life and we can do it when the outcome is going to be death very quickly, that’s a very
strong moral rationale to think about saving that life and prioritizing the sickest. How about something like the probability of
survival with the transplant? So this is not looking at how sick they are. But say you
have two people who are very, very sick. One, the survival chances with the transplant are
80%. And for the other patient who has the exact same condition, just as sick, no other
differences, but for whatever reason, their chance of survival with the transplant is
only 50%. Should we prioritize the patient who has an 80% chance of survival versus the
patient with the 50% chance of survival? Well, there seems to be some rationale behind that,
because you want the scarce resource to be the most efficacious. But is it really treating
the patient with the 50% chance of survival fairly when we do that? Let me just step back for a second and say,
the goal in this conversation is not to give you a definitive answer. It’s important for
you to think about these challenges and struggle with them. And you’ll see as we go through
the conversation that there aren’t necessarily clean and neat answers to problems like this.
So people do think that probability of survival should factor into our calculus for deciding
who gets a transplant in cases like this. But how much weight you give it is not necessarily
determined. How about the duration of benefit? So this
is a little different from the probability of survival. Now we’re talking about something
like the number of life years extended. So if you go back to our case, should we prioritize
the baby who potentially could live for 80 years if she gets the transplant versus the
65-year-old who maybe only will live 10 years and has lived a full life and has a narrative
of a life that’s fully lived? Maybe he has grandchildren, has really had many of the
life experiences that we look for in terms of saying, this is a life that’s been well-lived. Again, controversial area. We’ll come back
to this a little later. And it’s not clear. There’s certainly not consensus about whether
there should be priority attached to the number of life years saved. Another area of controversy– the quality
of life years saved. So what do I mean by that? Imagine that we have a patient who has,
unfortunately, in addition to the need for a new liver, also devastating comorbidity
involving their cognitive capacity or their neurologic function. And we have another patient,
all things else are equal, but they don’t have that problem. They have relatively normal
cognition. They have a job, they’re in a successful career, whereas the first patient is dependent
on others to care for himself. Should that matter? So the quality of life, we say, objectively,
as somebody who’s not living that life, appears to be worse for the patient who has severe
neurologic disability versus the person who doesn’t. Should that factor into our equation?
Again, no surprise, this is a controversial idea. It does have some resonance in our practice
in the way we think about the distribution of scarce resources. But again, it’s not at
all settled how much priority this should get in that distribution scheme. Another area is the cost and resources associated
with life extension. So what do we mean by that? Imagine, again, you have two patients,
one of whom, if they get the transplant, it will also cost hundreds of thousands of dollars
going forward to keep them alive because of other comorbidities, whereas another patient,
once you do the transplant, it will cost much less than that or they won’t need as much
help or intervention after the transplant, assuming it’s successful. Should that factor
into our equation? Again, controversial area. That’s the catch
phrase for this talk– lots of controversy, very few settled answers. And people will
debate how much that should factor into our thinking about the allocation of a scarce
resource. Last two factors that people have mentioned,
again, that are controversial– one is personal responsibility. So what do we mean by that?
Well, if we go back to the case I illustrated the idea with, we have a patient who has alcoholism.
Does that matter? Does the fact that the patient has tried to go through rehab and abstinence
programs and has not been successful, should that factor into it? What if they refuse to do those kinds of things
and say, this is my choice, I choose to be an alcoholic and I don’t want to do anything
about it? Would that factor, or should that factor into our decision-making? Again, I’ll
come back to this in a little bit. But you can imagine that this is a controversial area
where people often have very strong opinions about the allocation of scarce resources. The last one I’ll put out there for you to
consider is social worth. So I mentioned, in our case, a physician who it is out there
doing humanitarian work in addition to whatever else he or she is doing in service of the
community at her local hospital. Should that factor into the equation? A physician or somebody
who’s a successful employer of many, many people or some other community leader, do
they deserve some priority over somebody with the exact same condition and exact same medical
need who is homeless or is marginalized for other reasons? You can imagine, an area of controversy. People,
believe it or not, think that maybe should factor into it. But I will suggest later on
that that’s, generally speaking, not considered an adequate criteria for the allocation of
scarce resources. So that’s certainly not an exhaustive, but a pretty extensive, list
of factors that people often think about, at least initially, when they’re thinking
about how do we allocate a scarce resource like a liver. Guidelines and Principles. In the case of organ sharing, we actually
have developed really strong guidelines and official guidance that really govern the allocation
of organs in the United States. And the guidance comes from a nonprofit organization that manages
the organ sharing program for the federal government, so it has the backing of our government.
And it’s called the United Network for Organ Sharing– or U-N-O-S or UNOS. So UNOS is made up of physicians; policymakers;
experts in this domain; ethicists, believe it or not, and other folks who– community
leaders– all the stakeholders that you would think would be relevant to this conversation.
Patients and patient advocacy groups. So they have come up with a system and a set of principles
to guide how we think about allocating organs to many, many patients who have potentially
the same need. There’s a scoring system that I’ll talk about
briefly in a little bit. And there is a system that’s in place for adults, and that’s generally
meant to be 12 and over, and children, which is generally meant to be 11 and under. There
are three principles. The first principle is a principle of utility. The second principle
is a principle of justice. And the last principle is a principle for respect for persons or
autonomy. So what do we mean by utility? Let me just
say that utility is a very complicated concept. We’re going to keep it simple for the purposes
of this talk and just think of utility as a maxim to maximize the good for the most
people. Even with that simple idea, you have to decide. There is a complicated part of
that, and that is what is good? And so assuming we can agree on good, then
the principle that operates here is that we ought to take whatever good we have and maximize
its use in thinking about how we allocate resources. So if we can benefit 100 people
versus one person, a principle of utility would say– with the same intervention– the
principle of utility would say, let’s maximize the good for 100 people. Because 100 people
benefiting from this good is better than one person– simple, straightforward application.
Life is messier than that, but you get the idea. So in the case of organ transplants and UNOS’
guidance, they say some of the factors that we ought to consider when we’re thinking about
a principle of utility is– the likelihood of patient survival; the likelihood of graft
survival, meaning the likelihood that the organ will actually take in the person; the
quality of life; the availability of alternate treatments; and the age of the patient. So
all of these categories are just parts of a complicated equation. None of them speak
specifically to maximizing good, but they are factors that when we’re thinking about
maximizing good, the network wants us to think about it in terms of utility. Just as importantly, and perhaps more importantly,
the network has specifically articulated that certain considerations of utility will never
be considered. Well, I shouldn’t say never but certainly not included in this day and
age. And those are social worth. We talked about that before– social worth
such as a value of somebody’s instrumental value to somebody in society, being a successful
leader in the community or a position or their status. They’re a famous politician or a celebrity
or a baseball player. You can think of Mickey Mantle. Those things ought not to and will
not currently factor into our consideration of scarce allocation of resources. Even if we think somebody is instrumentally
more valuable to a community or a society, based on what they are doing currently as
their occupation or however they’re engaged in the society, that doesn’t trump somebody
else who doesn’t share that social worth or value just because of the social worth or
value. So that’s an important stopping point for thinking about utility. In the same area, even if it was the case
that factors such as your race or your gender or your socioeconomic status statistically
predicted that an organ was less likely to be successful– because you are a woman, because
you are Asian, because you came from poverty– and it would be more likely that the organ
would take and you would have a longer survival if you were Caucasian or if you were a male
or if you were in high income status. So the utility equation in that situation is that
you’re maximizing the good by having the person live longer. The principles within the United
Network for Organ Sharing absolutely exclude those considerations, so again, taking out
what might be thought of as a utility factor from the equation of deciding who gets the
resource. The second principle we talked about is justice–
or we mentioned. And so justice is equally, if not more so, a complicated idea than is
utility. Again, lots of treatises being written about what justice actually means. We want
to keep it simple here. And there are two concepts that are important to think about.
One is treating equals equally. The other one, which has problems– and I’ll
get to that a little later in our talk– I think more useful and more practical as in
terms of a working tool is the idea of fairness. So if we talk about justice, we want to think
about how is something being fairly distributed amongst people who have equal claim to that
good? So fairness is the operating principle. Again in the case of the Organ Network, the
factors that they want us to think about in developing a system of allocation are medical
urgency, so meaning how sick is the patient; the likelihood of finding a suitable organ
in the future; the waiting list time; first versus repeat transplant. So you can imagine
in that case if somebody’s had two transplants and they’ve both failed after a certain amount
of time, is there a fairness consideration for somebody who hasn’t had a transplant yet?
Age again comes up, so notice how age factors into both justice and utility. And then there’s this notion of geographical
fairness. If somebody lives in rural Alabama versus metropolitan Boston, is it really fair
just because the person is farther away from the possibility of having a transplant at
an advanced transplant center. Is that fair? Should we think about that? Of course, the
notion here is that it isn’t fair, and the fact that you are geographically in an unfair
place, you shouldn’t be penalized for that. The last principle to consider is respect
for persons. And this is the least, sort of, directly applicable to these situations of
scarce organ transplantation. But for the sake of completion, we’ll mention that it
is part of the discussion from the United Network for Organ Sharing. And so the things
that they mention that should be considered– the duty to respect decisions of donors or
those who refuse to donate an organ, the right to refuse an organ, free exchanges amongst
autonomous individuals. So what does that mean? It means an allocation
by a directed donation. A family member decides to give his or her organ or share his or her
organ to somebody that they love. Respect for person says we can’t– we ought not to
discourage that. We should respect that generosity by the person and not say, if you’re going
to give an organ, we get to decide– meaning we the state, the society, gets to decide
where that organ goes to. And then lastly, what does respect for persons
entail? It entails being transparent about the processes and the allocation rules to
enable everyone– all of the stakeholders– to make informed decisions. So there shouldn’t
be any secrecy behind how an organ gets transplanted. Because secrecy leads to distrust, and distrust
is disrespectful to people. It’s really, really important, and you’ve
probably already figured out, that these principles co-exist in conflict. You can’t always maximize
utility and respect justice concerns. And that’s really the primary conflict when you
think about organ transplants. It’s important– and that’s OK. It’s also important to know
that it’s OK that principles conflict. That’s the nature of human values. They’re not always
aligned with one another. The key for the allocation of a scarce resource
like an organ is that generally justice considerations get preference. And it’s clear in the way
that we have developed a scoring system. So the scoring system for adults is called the
Model for End-Stage Liver Disease, and for pediatrics, it’s called the Pediatric End-Stage
Liver Disease. And the acronyms for both of those are MELD, M-E-L-D, and PELD– P-E-L-D. The main thing to know, you don’t have to
master the scoring systems. You can look them up very easily. But the scoring systems are
objective, laboratory-based data that allow anybody to look at the indicators and develop
a score and then compare two or three or five people in need of an organ and decide who
is the sickest, based on that scoring system, and deciding who gets priority based on that
scoring system. So the MELD score includes the bilirubin,
the creatinine, and the INR or PT clotting time. And again, as we said, those are just
basic, objective laboratory measures that every patient can have drawn and determined.
And based on how abnormal they are, it will equate you with a score. In the pediatric
case, it is bilirubin, and albumin, and growth failure, and whether your age is less than
one year– and also, as in the case of MELD, your INR. So slightly different scoring scale
to address things that are peculiar to pediatrics than the MELD score. But again, the idea is you have objective
laboratory criteria to develop a system that is statistically derived to predict who is
the sickest and most likely to die in a certain amount of time. And this is based on data
that’s been generated from thousands of patients. So it’s pretty robust and pretty predictable–
but not perfect, like any system. Again, the take home message here is that
in hard cases, reasonable people can and do disagree. And we shouldn’t shy away from the
fact that it’s OK for people to disagree about these hard cases. And in those hard cases,
we have principles that help illuminate a discussion, but they don’t solve always with
satisfaction. There’s always going to be a trade off in cases that are hard. It is a sickest first system, meaning that
it prioritizes this notion of justice. And it also assumes that if you are more sick,
you’re sort of taking a bet that the people who are less sick, we can keep alive for a
longer period of time. And so that if they get sicker, eventually– hopefully within
a reasonable time frame– they will get access to the organ because they will move up the
system. They will get– as they get sicker, their likelihood of getting the organ is going
to be increased. So the fairness is built in that way. The sicker you are, the more
likely you’re going to get the organ. The less sick you are, the less likely. And fairness
filters in by equalizing people as they get sicker. The controversy around this system– and it
is controversial. There are certain people and certain thoughtful advocates who have
thought a lot about these situations who suggest that this isn’t the most efficacious use of
a scarce resource. So what this means is is that we won’t necessarily factor in things
like we talked about before– how long somebody would live when they got the transplant. So if you have somebody in our– go back to
our case– the 65-year-old who is the sickest, will likely have the highest MELD score. And
they are most likely to get the transplant based on that, even though they may only have
5, 10, 15 years to live– assuming that the likelihood of the graft survival is reasonable,
meaning it’s not a complete waste of the opportunity. And I won’t give a quantifiable number for
that, but imagine that there’s a very good chance that the liver will take– that the
patient will live for some period of time. That’s the primary consideration. The other
folks who have weeks or months to live have to wait. And in all likelihood, that’s how
that case would actually play out. Obviously, you could make permutations on
the case, and facts and specifics matter. But for the purposes of thinking about general
rules, the sickest generally get priority in the cases of organ transplants in our country.
And that is elevating, again, a notion of justice and fairness over other concerns.
It doesn’t mean that utility considerations can’t bump people out of it. But in general,
this is the first line of thinking. Let me suggest to you that one case that often
gets people emotionally charged is when we talk about giving a liver to somebody who
has an addiction like alcoholism, and that person doesn’t seem to be able or willing
to go through the required changes in their choices of using alcohol or substances in
order to be a beneficiary. Somehow the notion of personal responsibility– well, they’re
responsible for their alcoholism. And we compare that to somebody like our physician who seems
to be committed to doing good in society. People get upset that we might give the liver
to the alcoholic versus somebody who’s got more, quote unquote, “social worth” and doesn’t
carry that same stigma of personal responsibility for their sickness. Take a pause here and just tell you that,
while that narrative sometimes resonates with people, it is a very, very– I think– problematic
narrative. Because our thinking about alcoholism and substance abuse in general has changed
dramatically over the last decade or two. And that’s a good thing, because alcoholism
and any substance abuse is really a disease. It’s an addiction. It is physiological. And
to dismiss somebody’s alcoholism as their choice is really short-changing the biology
of addiction. And thankfully, we’ve come to that understanding.
It doesn’t mean people still don’t get upset about it, but I think that as providers of
care, we have to step back from that temptation and recognize that alcoholism and other substance
use is an addictive disease. And that changes the narrative of autonomy and choice. It’s
not simply that an alcoholic can choose to keep drinking. They’re addicted, and we have
to recognize that. And we have to provide resources for them to manage their addiction
rather than blaming them for that disease. So that’s a note on the idea of personal responsibility. So let me lastly turn while we’re talking
about scarce resources to its applicability to neonatal medicine. And thankfully, I can
tell you that the issue of organ transplantations in babies is extremely infrequent. The most common organ transplant is either
the kidney or the liver. And in most cases, it’s rarely a life-threatening crisis in the
neonatal period, meaning within the first month of life. Occasionally it is, but rarely
is it the case that a baby must have a liver within the first month of life. Often they
can be sustained on life support for weeks and months. And they fall into the same scoring
system, the PELD system, that will eventually get them a transplant. It is also the case that is more often than
not that babies in neonatology will be the beneficiaries of directed donation from family
members and loved ones. The challenges of thinking about the ethics of allocating scarce
resources for babies is not nearly as intense or worrisome as it is the larger framework
for thinking about it on a societal level. Let me turn now to a different case. And the
reason for doing this is just to highlight one more principle that has been put out in
recent years by ethicists and thinkers in this area about how to allocate scarce resources.
And I won’t spend a lot of time on it, but I want– just for completeness sake– have
you have heard of this. It’s an influential but controversial argument. And imagine that we had, rather than the allocation
of a scarce resource like a liver, we had a pandemic. So one of the reasons this idea
gained some traction in the bioethical and medical literature in recent years is when
we had the flu scare– the flu pandemic scare a few years back. Lots of communities and
countries and societies were all thinking about, well, how are we going to manage if
there really is a life-threatening flu that could wipe out hundreds of millions, if not
tens of millions of lives? And we don’t have enough resources in the hospitals or in our
communities to manage that and we only have a certain amount of medication, how ought
we allocate that if we’re really in a pandemic crisis? A group of influential physicians and bioethicists
from the NIH suggested that we might think about a principle called “fair innings” or
“life years”. The reason why it’s relevant to the discussion of neonatology, because
it actually suggests that– and it argues for– purposefully discounting life that cannot
value itself or life that has lived a full trajectory. So fair innings is the idea that
if you’ve lived a long life, you’ve had your fair share of life. And therefore, your priority
for a scarce resource should necessarily be discounted. That may resonate with a lot of people. The
part that is less cut– and it may not resonate with some people. But the part that is much
more controversial is discounting life that cannot value itself. And what do we mean by
that? Well, we often think of– typically, we think of babies as not necessarily having
purposeful consciousness yet in the neonatal period. They have brain activity. They are
developing neuronal connections that are critically important for future life, but they’re not
interacting or communicating with us like toddlers are and older children and, obviously,
adults do. And so their consciousness, or lack thereof of consciousness in the way that
we think about consciousness, is a strike against them in the context of allocating
a scarce resource. So how does this play out in a pandemic? Well,
it would be a curve. It would be essentially like a bell curve. The people who are prioritized
the most are those who are out of infancy and are moving into adolescence and into early
adulthood. And there’s a natural tail as you get closer to the end of life. And so priority
for a scarce resource in a pandemic would follow this fair innings or life years account. Reducing Scarce Resources. The last bit I want to talk about in terms
of scarce resources for the purposes of this discussion is it’s a step back question. And
that is is that what creates conditions of scarcity to begin with? So in the case of
organs, it feels like it’s pretty straightforward. We need our organs to live. And it’s a pretty
onerous and scary idea to be donating our organs. Even if we don’t need two kidneys,
not everybody wants to sign up to give one away so we create a bigger supply. But our
system is very much oriented towards people actively choosing to donate and having to
make a deliberate, thoughtful decision right off the bat and opt in to the decision to
volunteer. And that reflects our commitment to this idea of respect for persons. You can think about ways to reduce the scarcity.
And these are, again, controversial ideas, but ones that are important for you to think
about at the macro level. We don’t pay people to donate organs. Other countries have begun
to do that. And whether you think that’s a terrible idea
or a good idea, it is a way to create less scarcity. And it’s something that, again,
thoughtful people have said, well, what’s really the resistance to doing that? If it
only sort of preyed upon the lowest socioeconomic classes, we would obviously have worries about
justice in that case. But if we could make it a system where people who really could
autonomously and not feeling coerced to pay, maybe there would be a way to increase our
scarce resources that way. So the other less controversial idea is–
but still controversial– is something like an opt-out nudge. And what does that mean?
It means that well, currently our system whether it’s through driver’s licenses or some other
official mechanism, you choose to be a volunteer donor at the time of your death if it’s unexpected.
Or you write it into your will or you express that. But you can imagine a different system where
the default for our community or a society is that everybody is presumed to be a donor.
And you have to actively choose not to be a donor. So it actually requires a little
bit of activation energy to say I’m not going to be a donor. And the argument is that it’s neutral. It
still respects autonomy. People still have a choice. Nobody is forced to being an organ
donor. But they have to take the time and effort to think about it and make a decision
not to do it. So the default is to create less conditions
of scarcity. Interesting idea. Again, not gaining a lot of– currently, anyways– ground
at a policy level or a political level in our society. But it’s something that is discussed
regularly and routinely and I suspect will continue to be a topic of conversation. Social Justice. So we’re going to turn now to, if that wasn’t
complicated enough, an even more complicated subject. And that is the idea of justice and
social justice, in particular. So I mentioned before that we simplistically might think
of justice as an idea about fairness, and how do we address fairness in a society that
is full of inequity in full of inequality and ways that people with more means or by
luck have more access to better health care and people who have less means or bad luck
may have less access to good and adequate health care? How do we account for that and
how do we address it as practitioners? And what can we really do about it or how we ought
to think about it? It’s challenging and there aren’t clear answers.
And we might just start with the hardest question. And again, there isn’t a clear answer. You
could spend a semester, if not your lifetime, thinking about this. And that is first of all, do we have an obligation,
morally or ethically, to correct for people who are born into or suffer unlucky circumstances?
And if we do have that, how far, to what extent, does that obligation extend? If you polled
100 people in a room, they’d probably give at least 50 different answers, and it’s important
to just acknowledge that up front. Our job today isn’t to answer the question, but just
to ask it, because that’s the kind of question you ask when you start to think about social
justice and medicine. What is grounding this concern for social
justice work comes from a lot of different strains. There’s a very rich, long, millennia
long religious tradition, whether it’s in Christianity or other religions, that espouses
to have a special concern for the people who are worse off than not. If you’re not religious,
there are certainly very strong secular traditions to be worried about justice. The most famous American philosopher to talk
about it politically was John Rawls. He had a theory of justice. And he asked people to
imagine that at the time a society was organized, if we all had a veil of, quote, unquote, “ignorance,”
meaning we couldn’t see where we were going to be stationed in this society that was about
to be created when it started, we would probably want the society’s rules– so we had completely
no idea of how we were entering into the society. We could enter at a level of extreme poverty
or no resources. We could enter at a middle level. We could enter at a very high level. If we didn’t have that knowledge and we wanted
to organize what we thought was a just or a fair or a society just simply that we would
like to live in, we would want to organize the rules around that society to account for
the fact that we would want help. We would want support if we were, in fact, the worst
off, born into that situation, worst off. And so that is sometimes called the difference
principle in Rawls’ theory of justice. But the idea, again, is something that most people
can understand. If you don’t know where you’re going to be placed in a society and you’re
ignorant of that beforehand– like all, for example, babies are– we ought to have a society,
if we worry about justice, that accounts for the chance that you’re going to end up in
a difficult station initially and provide you with opportunities to rise above your
circumstances. So let’s try to ground our somewhat abstract
discussion of justice with a case. So imagine that you have two patients who enter your
outpatient clinic with the same clinical problem of uncontrolled hypertension. One of the patients
comes to you– and they have the same blood pressure and it looks like they have the same
otherwise, quote, unquote, “medical profile.” So nothing else really very distinguishing
about them. However, one of them comes to you from a very
secure social situation, meaning that they have a steady, secure job, generate an excellent
salary. They have good health insurance. They have a stable home life. They have access
to healthy food choices. They have access to gyms and exercise facilities.
And they avail themselves of all those things. So they don’t have typical major life stressors. The other patient comes to you and that patient
is unemployed, has severe major life stressors, including housing insecurity, food insecurity.
They live in a place that is frequently subject to violence in the community, and in many
objective ways, have a worse off situation socially. So how do we prioritize resources
in this case? Should we even think about prioritizing resources? Because you can argue that one
person is suffering from social injustice or unfairness. And for the sake of the purposes of this case,
these conditions of injustice or unfairness are largely out of this person’s control.
They didn’t ask for it. They’ve tried to change their life circumstances. They are stuck in
a very difficult place. So are we validated? Should we think that
there’s a moral obligation to attend to those social injustices in a way that diverts some
resources towards the patient who has those challenges and spend potentially less time
or less resources on the patient who has not suffered those circumstances of social injustice?
You can see this is a hard question and there aren’t going to be easy answers. So we have to ask ourselves how and what in
terms of prioritizing the resources. So more physician time– do we spend an hour with
the patient who has the social challenges and only 20 minutes with the patient who doesn’t
have those challenges? Do we provide more intensive follow up, meaning we schedule five
more appointments right then and there for the patient with the social challenges and
only one planned follow up, maybe two months versus the next five weeks in a row, for the
other patient? Are we obligated to do more as an advocate, meaning get social workers
involved, do the extra work outside of the clinical context to bring some supports to
the patient who has these social challenges? These are not easy questions to answer. And
you can imagine, again, that there are a lot of different responses to these challenges.
But they’re the kinds of questions you ask when you frame social justice into the equation
of providing medical care to people. Equality. So I want to not elaborate too much more on
that case. I want to step back again and talk a little bit more abstractly about some ideas
about what we mean when we talk about social justice. And I mentioned earlier in the conversation
that people often talk about equality when they talk about social justice. And I think
that it’s important that we have some clarity that equality probably isn’t the primary concern
when we’re talking about social justice. And I’ll speak to that in a minute. But people often equate or think about equality
in outcomes or welfare between people, and they say that’s a just society. And this is
because we worry about reducing inequalities in health between groups or persons that don’t
stem from any sort of legitimate reason. But concern for the worst off is really different
than a pure concern for equality. And what do I mean by that? Well, it helps sometimes
to think about some concrete examples. Raising the position or making the worst off better
can reduce inequality, but it doesn’t always have to do so. So you can imagine two different scenarios.
The first is that the only way to raise the worst off would be a situation where you also
make the better off better. And this is a very deep theory in American economics that
has a lot of resonance, whether you agree with it or not. It is the notion that a rising
tide raises all people. Meaning, it doesn’t matter if you’re at the top already or at
the bottom. If the whole tide is rising, everybody is better off. That may, in fact, make people more unequal.
But as long as the people who are worst off are getting better, you are achieving a just
outcome. Debatable, but that’s a notion that is very deeply believed in many parts of our
country, politically. The other idea about equality and how it isn’t
quite what we mean when we talk about social justice is that– and this is, again, a little
bit of an academic idea, but it is an important one. Because, again, it shows us what we’re
really concerned about. If the only way to achieve equality between two groups was to
make the group that was better off, worse off. That seems like a perverse outcome. So imagine
that you have a society that has half of its population as blind, and half of the population
as seeing. There’s no way to change the blindness of the blind people, but you could equalize
everybody by blinding the people who can see. When most people hear that, they think that’s
an absurd idea. And we would never want to achieve equality by making people in better
standing worse off. What we want to do is figure out what we can do to make the people
who are worse off better. In the absence of being able to give them sight, we have to
come up with some other mechanisms. Again, sounds a little bit academic, but it
really, I think– hopefully– brings home the point that when we’re talking about social
justice, we’re not necessarily talking about strict equality. We’re talking about an eye
and a mind towards helping the worst off. And hopefully, in the bargain, reducing some
health care inequalities. But not necessarily hoping for an achievement of pure equality. So hopefully you’re OK and comfortable with
the idea that when we’re worried about social justice, we’re really worried about something
like prioritizing people who are in a worse position, and not so much with equality. And
so, in the case of health care, we can say that– we might argue that there is a greater
moral value to benefiting people who are worse off. And the greater the undeserved health
deprivation or need that an individual patient suffers, the greater is their claim to have
it alleviated. These are some grounding rationales for worrying about the worst off. And what
this means, practically, is that we ought to think about ways to divert more resources,
direct more resources, to the worst off. Operationalizing Social Justice. There are a lot of challenging questions when
we think about operationalizing a principle of social justice. And I’m going to try to
spend the last little bit of this talk just raising those questions without, again, necessarily
answering them. It’s important for you to think about them in your spare time when you
try to think about social justice. So, first question is, who are the worst off?
I gave you an example, but maybe you don’t agree that having those social circumstances
really are the important criteria for being worst off. We can think of other criteria
as being the worst off. somebody who is physically worst off, such as being severely disabled.
Is it the overall well-being that matters, such as being very poor and having no social
supports? Or is it having the worst health, meaning that you’re the sickest? Any one of those claims has, I think, a justifiable
claim to being worse or worse off, relative to some other– relatively speaking– beneficial
situation. It’s not clear when we talk about social justice which one of those should get
priority of if some mix of them. And the point here is that you have to think about worst
off very globally and think about a whole number of parameters that might inform how
we’re thinking about who is worst off and that also will determine what we might do
about it. So that’s one challenge for social justice– practicing social justice. The other challenge is, as we just mentioned
in our little case example, how much priority do we give to the worst off? So if we give
absolute priority, meaning we pour all of our resources– maybe not even all– but a
lot of our resources into those who are the worst off, there is a risk of what is called
a bottomless pit problem. If we use very great amounts of resources and those resources only
produce limited or marginal gains in health outcomes, are we really– we’re not, probably,
respecting this principle of utility that we talked about before that ought to matter
at least somewhat in our calculus. And if we’re really doing harm in that sense to a
broader population, it should give us pause about thinking about priority. Now, we live in a very resource-rich world
and so this, again, may sound like more of an academic debate to social justice warriors.
And I definitely respect that, but it’s something to think about. Even if we say that there
are enough resources now to do much better than we are for the worst off, that doesn’t
answer the question of how much priority at the end of the day do the worst off get in
a world of some scarce resources? So if we come back to our case– and this
is probably the hardest challenge for physicians, specifically, or care providers at the point
of care is this– there’s just a professional conflict we face when we want to and we espouse
to treat all of our patients, quote unquote, “equally” at the point of care. And yet, if
we have this commitment or concern to rectify or address unfairness or injustice in society,
how do we manage those two? Because it feels equally problematic to say
the patient who has all of these resources gets less than the patient who has no resources
in terms of our attention and our care. If you’re going to justify that, you have to
be willing to take a risk and live in a slightly less comfortable area than most mainstream
American medicine is practiced. It feels somehow uncomfortable or disconcerting to say, I’m
going to treat two patients with exactly the same– quote unquote, “exactly the same”–
medical problem differently because one is poor and one is well off. So my last little bit of discussion on social
justice. I just want to touch on the fact that the applicability of social justice concerns
to neonatal medicine or neonatology is, again, dampened, much like in the case of scarce
resources. When you practice in an ICU setting, it’s one of the few places that it almost
feels like you never have to worry about issues of scarce resources or social justice because
everybody who comes into your ICU and is admitted as a sick baby generally gets access to everything
that’s available to try to keep them alive and to have them survive. They get the ventilator.
They get the medications for their heart. They get the surgeries. And nobody, generally
speaking, in our society stops and says, who’s going to pay for that? Or we don’t have enough
of this medicine to give to this baby for this condition. That’s a really luxuriant and wonderful position
to be in, in neonatal medicine. And in general in ICU medicine, it’s sort of the most removed
from these acute concerns of social justice, once you’ve entered into the system. And that’s really the key consideration. If
you haven’t entered into the system, meaning that you haven’t been triaged to the point
where you’re actually in an ICU as a baby, there are all sorts of social determinants
that may prevent you from getting there. If you’re born in a very marginalized community
that doesn’t access health care regularly, maybe you don’t even end up in the NICU before
you’ve suffered some life-ending event or something like that. Or you don’t have access
to the resources to be able to actually deliver in an institution that can get a sick baby
to the ICU. So those things are out of our direct control as providers of neonatal medicine,
but they certainly inform this concern about social justice. The other end of that is when patients leave
our ICU. And if they’re leaving to go home or go to circumstances that, again, bring
into play questions of justice, those are real concerns that, typically speaking, practitioners
of neonatal ICU medicine aren’t very well equipped to address. There are social workers.
There are other groups within a hospital or institution that may help. There’s certainly
a primary care community. But again, it falls a little bit out of the domain of the practice
of neonatal medicine, and it’s something that we ought to be cognizant of, acknowledge our
limitations about, and think about what we might do more if it’s a pressing concern in
our practice. My conclusion for all of you is just to acknowledge
that as practitioners, you often feel powerless to change background conditions. And that
is a perfectly respectable place to sit, if not an uncomfortable place to sit. But I would
just challenge all of us to think about the fact that passive acceptance of circumstances
that feel unjust or feel unfair is a choice. You can choose to be active. You can choose
to be an advocate– whether it’s in your community, whether it’s in your institution, whether
it’s in your domain of practice, or whether it’s politically. It’s your choice to choose
to accept or not accept the circumstances. And that is, fundamentally, an ethical and
moral choice. And it’s up to you to decide how much energy and time you want to spend
on challenging issues, where reasonable people can disagree. And it’s also perfectly OK for
reasonable people to disagree, because there are clear trade-offs in importantly held human
values in this area. And there are rarely easy answers. And I thank you for your time. Please help us improve the content by providing
us with some feedback.

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