How to Work Through a Clinical Ethics Problem: One Ethicist's Approach
(Grand Rounds Talk for MOC or Ethics Credit!)
https://cmetracker.net/UTHSCSA/Publisher?page=pubOpen#/getCertificate/10095284
In this new episode of the Ethics Credit Podcast, Host Holly Wayment brings us neonatology veteran Dr. Brian S. Carter. In this grand rounds talk, he leads a captivating discussion on the nuanced aspects of pediatric bioethics. He explores the challenging scenarios in neonatology, the complex interaction between pediatric autonomy, parental authority, and virtues, and the dynamic role parents play in the decision-making process.
Dr. Carter shares practical examples underlining the importance of empathy, shared decision-making, and understanding patients' narratives in ethical healthcare. In addition, he delves into critical challenges in perinatal health care ethics, particularly the debated concept of periviability. The episode highlights the significance of an ethically sound approach in pediatric practice, enlightening listeners about myriad ethical considerations in child health care.
FACULTY:
Brian S. Carter, MD, Interim Director, Children’s Mercy Bioethics Center and Division of Neonatology, Children’s Mercy Hospital. He is an academic neonatologist who has been in practice for 40 years.
OVERVIEW:
Pediatrics Now Podcast host Holly Wayment presents Brian S. Carter, MD talk regarding how to work through a clinical ethics problem.
DISCLOSURES:
Brian S. Carter, MD has no financial relationships with ineligible companies to disclose.
The Pediatric Grand Rounds Planning Committee (Deepak Kamat, MD, PhD, Steven Seidner, MD, Daniel Ranch, MD and Elizabeth Hanson, MD) has no financial relationships with ineligible companies to disclose.
The UT Health Science Center San Antonio and Deepak Kamat, MD course director and content reviewer for the activity, have reviewed all financial disclosure information for all speakers, facilitators, and planning committee members; and determined and resolved all conflicts of interests.
CONTINUING MEDICAL EDUCATION STATEMENTS:
The UT Health Science Center San Antonio is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.
The UT Health Science Center San Antonio designates this live activity up to a maximum of 1.00 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
CREDITS: AMA PRA Category 1 Credits™ (1.00) Non-Physician Participation Credit (1.00)
Texas Medical Board of Ethics (1.00)
MOC 2 credit (1.00)
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
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Music.
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Podcast for ethics credit. Today, I'm bringing you Grand Rounds,
how to work through a clinical ethics problem, one ethicist's approach.
Today, we'll hear from Dr. Brian S. Carter.
He's interim director at Children's Mercy Bioethics Center and Division of Neonatology,
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Children's Mercy Hospital.
He's the chairman and endowed professor in the Department of of Medical Humanities
and Bioethics, Department of Pediatrics at the UMKC School of Medicine.
Dr. Brian Carter has been in practice as a neonatologist for 40 years.
He's authored more than 200 peer-reviewed manuscripts and book chapters and
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is a frequent speaker at academic institutions in North America and internationally.
Let's listen in to Dr. Carter.
To pediatrics is instead of the term autonomy, the principle that talks about self-direction.
Being able to choose for yourself what it is that you want, children,
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by virtue of their developmental capacity, are not really able to speak to their own autonomy.
Now, adolescents and young adults certainly have emerging autonomy.
But when we talk about parents making decisions for and with their children,
it's not the parents' autonomy, it's their authority vested in them through
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history and society and the law.
Basically, the authority that the parent has to speak for the child.
That's different from parental autonomy, which is they're choosing what they
want done for themselves.
So this is already a twist, if you will, to the uniqueness of pediatric theatric ethics.
On the right-hand side, I list four or five virtues.
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There are many virtues. Many of you may have learned them growing up from your
parents, from your faith community, maybe from philosophical learnings of Aristotle.
The first virtue, moral courage.
If one does not have the moral courage to identify a problem and speak to it,
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all of these other virtues really don't obtain.
So you have to be able to, we today say, see something, say something.
That's a reference to moral courage. See something that's amiss,
say something and try to address it.
There's also pediatric bioethics considerations that are different because,
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as I've already alluded to, the dynamic nature of the developing child.
That's one of the reasons we go into pediatrics, right? Kids change.
Those in practice in the community may already be taking care of the children
of children that you cared for.
You have this transgenerational continuum. continuum in
neonatology we don't do that until maybe you
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know a second baby to the same couple comes along and requires the intensive
care unit but at some point the developing child will need to be able to contribute
to decision making and this varies as you know across families across capacity
of individual children.
And I think that being attentive to that evolution and knowing when it's the
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right time to hear the child and have them contribute to decision-making is, it's a type of finesse.
It's sort of akin to clinical judgment that you can make in the hospital.
But being able to do that and allow for that, I think it's a great contribution
that that pediatricians can make to the development of a sound family unit,
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as well as the development of an individual.
Member of society, an adult who is going to be able to speak for themselves
and contribute in many ways.
We know that the ever-present voice and role of the parents is unique in pediatric medicine.
In adult medicine, unless one has cognitive capacity problems,
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dementia, and otherwise, the surrogate decision maker is rarely brought in.
But in pediatrics, we always contend with the surrogate decision maker,
namely the parents or legal guardian.
And what guides us, in addition to principles and virtues, is this precept of best interest.
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Raise your hand if you've ever had contention with those that you work with
about what's the best interest for this child.
It's part and parcel to what we do, especially in hospital medicine,
but even in In outpatient medicine, the best interest of the child might be
contested by the parent, or it might be that the child thinks differently from the clinician.
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So on and on, this best interest really requires, it demands, a lot of attention.
I use this diagram, compliments of Mark Blyton, a PhD ethicist I worked with
at Vanderbilt who's now retired in Southern California.
To help us situate where an ethical concern might lie.
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Now in the center there, you see a parent holding an infant.
And more times than not, this first layer, this individual interface between
parent, mother, father, child, maybe even the fetus in a pregnant patient,
and we're talking about fetal diagnostics and counseling.
A lot of what clinical ethics has really attended to over the last 40 years
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has been this individual clinician-parent or clinician-patient interaction.
So what's the best interest with a child? But I would well imagine working in
hospitals, you've also found that there are times where there is discrepancy
or discord within a hospital team. team.
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Primary clinician says this, the consultant says that, the nurse says this,
the social worker wonders about something altogether different.
And so what I see here and want to communicate in the second layer is role-related
phenomena of interdisciplinary team members.
And ethics issues arise in that setting as well.
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The role-related might even extend to the extended family.
Grandmama's in the background saying this, that, and the other.
If you do this for this child, then whatever's going to happen.
The most demonstrative example I could give you is once I had a child in the
NICU who had terrible birth defects and was on life support and was staling
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and we counseled the mother that we would recommend withdrawal from life-sustaining therapy.
We engaged palliative care we set aside a time that was designated by the mother
we were moving the child from the icu to a parent room for privacy and grandmama.
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Wagging her finger as we were leaving that bed site if you take that child off
the ventilator you're going to go to hell.
We did a 180, went right back to the bed space, made sure that everything was okay.
And we had to start all over again.
I imagine you've had similar experiences. And unless you have the person who's
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the decision maker in the room,
you can't really put confidence necessarily in a decision that's made because
there are external voices and powers that will The third layer here,
we all work in hospitals or health care systems.
There are certain ethical issues that come up within hospitals and health systems,
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that really reflect what's referred to as organizational ethics.
Anybody in a leadership capacity has to contend with this.
The organization has these policies and procedures, or we need to develop these
guidelines and return to certain leaders, return to evidence,
return to expert opinion, and glean things from the literature,
and we try to set forth best practice.
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But it's all done within a philosophy of care, whether it's public health,
charitable health, religious health system, again and again,
organizational ethics.
And most of us trained in medical ethics do not have expertise in organizational ethics.
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And we need to acknowledge that and seek additional training.
So there are now possibilities to get a master's degree in organizational management.
Not a bad idea if you want to do that. Healthcare administration,
an MBA, and you could have a focus in ethics within that study.
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But that's somewhat new and different.
And then finally, we all live in jurisdictions called counties,
states, and the United States.
So there may be local regulation, there may be state law, and there may be federal
law that we have to work under and with.
So that's the fourth layer there.
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So when someone comes to you and says, I have this problem, why are we taking
care of this 23-weeker in the NICU?
If we didn't take care of those babies, we could save so much money and vaccinate
hundreds of kids. Do you see where we're crossing lines from the center to the
third layer, maybe even the fourth layer?
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Yes, that's an ethical problem. But the resolution of that problem is not situated
with this baby at the bedside.
It really rests with a more global macro ethics outlook and requires engagement. engagement.
So, principles, virtues, best interest, situating where the ethics problem exists.
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Anybody here heard of care ethics? Any nurses in the field here?
Nurses oftentimes are speaking about care ethics.
Interesting origin to care ethics from two ladies back in the 80s.
One was an educator, educational philosopher, as it turns out. That's Nell Moddings.
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And the other, a psychologist who really addressed...
Kohlberg's child development and challenged it because it was predicated on white boys.
Think about that. How we learn child development all came from following the
development of little white boys.
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Well, we're all not little white boys, are we?
And so our children may have differences in their psychological development
just because they're girls, not boys.
They're people of color, not white. and she
made this challenge in 1982 and if
you look at this timetable 82 84 here this
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was a big departure if you will
from old white men mainstream psychology and
education starting to bring into focus what was originally called feminist ethics
because it was raised by women and dealt with this very phenomena that relationships and stories matter.
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Now, if you're a pediatric healthcare professional, you know that relationships
matter. What's one of the prime ones?
Mama and baby, daddy and daughter, relationships that are valuable,
that really guide people in their decision-making and what's important.
It helps establish values. values.
And so not only is the relationship important, and you have to attend to that,
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but you actually need to dissect it a little more and hear the story behind the relationship.
Why is this relationship important? It's not just because they're a parent.
It's because they've endured whatever facet of life. They've had experiences.
They have shared values. And so So from that, these ladies guided us to move
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away from what might be cold,
objective, principled bioethics to a little bit more kinder, gentler, friendly,
relation and care and compassion-based.
So this is in the background and often not attended to. But when yours truly
gets asked to do an ethics consult at Children's Mercy, I tick little boxes
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off principles, virtues, relationships, narrative.
All of those things should guide an ethics analysis of what's the right thing to do for this child.
Not just a singular principled approach or virtue approach.
Is that understandable? understandable so it makes sense it makes
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sense to me or i wouldn't have put it together for you today now how many of
you have heard from a parent i want you to do everything about all right do
everything you know what that is that's an invitation to ask but what does everything mean.
Everything imaginable everything covered in your health care plan everything
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that's reasonable everything that's beneficial,
but does not impose new burdens or harms, that requires a conversation instead
of, oh yes, we'll do everything.
Well, everything to an intensivist means something altogether different than everything to a family.
Intensivist, I am one, guilty. If something's not working, you just go pull
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another machine out of the closet and try that one, right?
Or you ask Ask the consultant from wherever to come down and help you with this case.
That's not exactly what parents are asking for. They want your clinical judgment.
They want prudence, which is a virtue, wisdom in action.
They want you to be able to think. And I would say the challenge here,
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this is a matter of empathy.
The challenge here is to imagine what it's like to be me in this situation and
what I need or want for my child.
Not necessarily what would you do for your child?
Oh, that might be a close approximation.
But imagine what it's like to be me. That's an invitation to empathy.
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And that then can guide us. So sometimes parents' demands for everything might
just reflect the fact that I want to be a good enough parent.
And a good enough parent will insist that every stone is turned over,
every opportunity is visited.
But if we want to know, we have to ask.
And the problem with asking is then you have to listen.
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And as my eldest child says, well, Dad, listening is no fun. I'd rather be talking.
And he does. Thank you.
Another way to look at this, and this is guidance that came to me in my training
in palliative medicine, was realizing that that narrative that we spoke about
before and this concern to do everything,
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this desire to be a good enough parent, might be a need to acknowledge the fact
that each of us as parents, as healthcare professionals, we're writing our story.
This is the story of our lives this is what we do we get
up in the morning we love what we do we actually feel
like we've made a contribution of good i hope that's the way you
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feel psychology you know
is well i remember the things i didn't do today
or i wish this had happened instead of that and we tend to focus on the negative
but you're doing a great good every day so they're writing their story just
as you're writing your story and when we're talking about end-of-life care or
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critical care and the risk of end-of-life,
they have to be able to construct a story that they can live with if the child does not survive.
And it would be an act of hubris if we presumed that it was our story to write.
Instead, we should sit with them and perhaps have the honorific of being asked
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to co-author it with them.
But we don't demand that this is is the story you're going to live with.
So again, narrative encroaches on how we make decisions and work with families.
This picture is used with permission of parents, Tom and .
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Oh, gosh. Common forgetting mom's name. French.
And this is little Juniper Junebug. If you're interested, I have no conflict
with this, and I have the parent's permission to tell this story.
Juniper, the girl who was born too soon. It's a book you can read.
Very interesting story. Kelly, French.
Interesting story about assisted reproductive technology, extreme prematurity,
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six months in the hospital. And I know little Junebug.
She's now like 12 years old, rides horses, dances, beautiful little girl.
But this, being a neonatologist, is like a picture of an ethical dilemma that's unfolding.
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And you have your own with regard to your own specialties, I'm sure.
So I'll talk a little bit about challenges in perinatal health care ethics.
I think one of the first of which is this idea of periviability.
Can anybody tell me what periviability is? It's a precise definition.
No, there isn't a precise definition.
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At least it can be argued because it depends on who you ask.
Are you asking a parent who is on the cusp of delivering a child at 22, 23, 24 weeks?
Are you asking public policymakers?
Are you asking parents? Or health care professionals.
And is that health care professional someone that actually works in the world
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of neonatology and obstetrics?
Or is it somebody that, well, I'm a developmental psychologist,
and I think that those things shouldn't happen because these kids have problems.
Well, some do, but many don't. And you can't tell on the day that a child's
born whether they're going to graduate with flying colors and have a two-year
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Bailey exam that makes them just like everybody else,
or whether they're going to develop CP or have problems with learning.
It's just unknowable. Maybe that's part of the reason we can't define perivivalent.
We also need to pay attention to the sensitivity of goals and values held by individuals.
So we talked about some of those variances in goals and values,
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but what's the right response?
If we're talking about care in an area where we can't absolutely say it's beneficial,
in which there would be no contest, we provide it, and we can't absolutely say
it's harmful, it falls in an area that's called the zone of parental prerogative or discretion.
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And sometimes we would offer that, well, this child's condition is one that does not have a cure.
Perhaps it's complicated birth defects or genetics.
And we're going to provide comfort care. Glenn, what is comfort care?
It depends on who you ask again, right? And it depends on the family.
What do you mean comfort care? Isn't everybody getting comfortable care?
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Why are you saying this is all my child gets? I want you to do everything.
So, healthcare ethics encroaches on neonatal, perinatal medicine, as you know.
What about the pandemic?
The pandemic gave us lots of time, a few years, to think about problems in ethics
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that might be unique to pediatrics.
Did anybody experience a pediatric overwhelming hospitalization during the pandemic?
No. No. What did we actually do? I have friends at Montefiore in New York that
they turned their PICU into an adult ICU.
They got pediatric ICU doctors and pediatric clinicians of varied specialties to work in the ICU.
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That wasn't their daily norm, but they did it in the middle of the crush.
And that happened in many places across the country. So we dealt with staff
equipment and allocation, but we also dealt with staff expertise.
I would not have wanted to have been an intern that year.
All of a sudden, I'm overwhelmed. And yet, being an intern or resident during
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those three critical years,
there must have been a great advance and maturity and sense of confidence and
competence to be able to do the right thing in a terribly overwhelming situation.
So people stepped up, as you know, and there were health care professionals who died.
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We also had to contend with uncertainty, which is the daily fare of hematologists
going back to perifiability.
But prognostication across different diagnostic cohorts, vaccine efficacy and
uptake, or whatever you might think, and I'm not a politician,
about what transpired during those years.
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The fact that this country could create a vaccine in one year was just phenomenal, historical.
And Operation Warp Speed, I can't think of a better name for it. It just was incredible.
But then you have vaccine efficacy and you have contention over whether or not
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we should actually use it or people agreeing to take it.
And if you're like me, you've probably had a couple and a couple of boosters.
I'm over 65. I have other risk factors, so, yeah.
But I still see families whose children graduate from the ICU,
five, six months in the ICU.
They have BPD. They're on oxygen.
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They won't get a flu vaccine. They won't get a COVID-19 vaccine.
And they won't get an RSV immunoglobulin or monoclonal.
So I don't know. oh, I can't figure out how people think.
Maybe you can and you have, and I'd be happy to learn from you.
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But that was one of the problems that we had that raised ethical issues.
Multi-inflammatory syndrome in children, both short and long-term outcomes.
What do we know? When do we know it? What are the ramifications?
And then ramifications. What about lockdown?
Everybody not going to school for the better part of the year.
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Are you ever going to capture that year again, that year that was lost?
Generally speaking, no. We have to make accommodations thereafter.
The other thing that I looked at in this particular instance was was recognizing
that there's a paradigm shift in ethics in times of pandemic or crisis.
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And unfortunately, I experienced this in 1991. I was at the wrong place at the wrong time.
Namely, I had just finished my fellowship in 1990 and got to move to Killeen,
Texas. It's not too far from here.
Fort Hood. I went to medical school on an Army scholarship. So there I was at
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Fort Hood in July of 1990.
And, you know, we operated a 12 or 15-bit level 2 plus short-term ventilation.
Everything else got sent to San Antonio, typically Brook Army.
But everything was peacetime, like in the top triangle.
The principal focus of ethical concern is between physicians and patients.
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There's not a lot of interaction between physicians and society and patients
in any particular obligatory sense to abiding by anything other than common law.
And so the individual well-being was where ethics was centered.
And this is true in peacetime, like even now. But in war, and I was a medical
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company commander in the Gulf War, I realized that if you use this today,
it's not going to be around tomorrow.
You had to practice conservation.
You had to have an eye towards frugal use of what's necessary and not be wasteful at all.
And when a unit a military unit
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moves as we did not terribly infrequently
you have to pick up everything and go and so you have to make sure that you've
got enough you use it wisely because the supply chain to get more of it whatever
it is beans bullets medication fuel all of that stuff of what we call logistics,
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the logistics train, would follow behind the killers, if you will.
It's a hard thing to think about, but I realized that that primary ethical concern
between the individual patient and the physician was eclipsed by greater concerns
that we had to the common good.
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Military unit, and also society who had asked us to be there,
and the individual members of the the military that I was serving also had to
answer to a chain of command.
And so the primary focus of the individual broke down and you actually subjugate
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your individual autonomy in the military to the greater good.
Well, it was that vision, that reality that helped me look at the pandemic in a very similar manner.
That concern for the public's well-being and arguably even the preservation
of the state eclipsed individual patient well-being.
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So operant precepts of ethics were solidarity, conservation.
We had to learn to work together, live together, work and save for the future.
We've reverted now back to the top triangle,
but I think the lessons that we've learned from the bottom triangle should stick
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with us because it revealed that we have a broken and public health system,
and we need to do better. Anybody know who this gentleman is?
It's a famous playwright, George Bernard Shaw.
This quote at the bottom of the slide is from him.
And I first found it on an email tagline of a friend in college,
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Rene Voss at Johns Hopkins, another neonatologist and palliative care and ethics expert.
The single biggest problem in communication is the illusion that it has taken place.
Well, I told them. I don't know why they don't get it. I've seen them every
day and told them the same thing. I think they're just in denial.
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Maybe that's our bias. Maybe we're not really listening.
Maybe there are cultural or linguistic, even racial, interference.
Maybe it's the way I frame things. I'm always talking about the negative.
It. Did you know your baby's so sick that they might die?
I don't want another doctor to come by and tell me how sick my baby is.
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I want a doctor to come by and listen to me and let's just talk.
Or at this institution, this is what we do in this situation.
It's the default option. There's no discussion. This is just what we do.
So we frame things and we communicate through all of these different filters, if you will.
And then when we walk away, we might think that communication has actually taken
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place, but indeed it has not. So thank you, George Bernard Shaw.
Communication has more than the singular information exchange to it.
Physicians are really good at informativeness, giving information,
almost to a fault, overload.
But if we've learned anything through the last few years, don't expect that
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all facts will be heard and accepted as truths. truths.
In order for a fact to become a truth, I have to incorporate it into my sense of value.
Parents teach adolescents, right? The adolescent has to incorporate whatever
the parents are teaching into who they are and what they believe and now the
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way they act. The same is true here.
There's a second part of communication called attunement. And I pay attention
when I'm speaking to, you know, are people paying attention?
Are they looking and listen, you do the same thing even one-on-one, right?
We have what's called mirror neurons in our prefrontal cortex.
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They allow us to see and regard the human face.
And in the same time, without thinking about it, we mirror the facial expression.
I scratch my ear, you scratch your ear. I go like this, maybe you don't have
a beard to stroke, but you might put your hand up to your your face.
You lean in, I lean in. Go like that, I go like that. This is how we get along. Anybody have a dog?
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What does a dog do when you're eating?
They want to eat what you're eating, right? It's part of the mammalian construct of the brain.
In higher order mammals, it's present and we pay attention to it.
And there are children that don't have that near capacity. capacity.
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You know what we call those children?
Autistic. They're on the autism spectrum. And you know that because you interact
with them and they never look at you.
They regard things more than you do human face.
And if you attend to children, you can anticipate that even before they're two
or three years old. You can diagnose autism before two.
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If in fact, all we do is attune and get involved in this interpersonal sensitivity.
Yeah, we're just being polite. So you have to do the first two together,
information exchange, attunement.
And then the third part, and this is our greatest challenge in communication,
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is partnership building.
What is the end result of communication that we're striving for?
Building trust, and being able to make decisions together, shared decision making.
So communication needs these three steps or you may not accomplish the objective.
Don't get hung up on number one, especially young people, because you learn it from old people.
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But we're really good at information. In fact, I told people,
you know, rounds can be just a day to dunk. don't.
Here's all the data. Do something with it. Well, that's not communication.
We need to focus on relationships. And if we do that, we're actually respecting
autonomy, the individual character of the people that we're speaking with.
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So instead of just, here's the task, here's the objective, try to understand
the individual patient's lived experience, going back to the narrative again.
And this is how communication can be built in a manner that contributes to self-determination
and situational awareness.
I try to teach my medical students situational awareness.
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When you walk in the room, it doesn't take 10 seconds to take it all in.
Patients here, bedpans there, respiratory treatment stand over here for the a COPD patient.
TV's on, cell phone's in hand. I have a few things to do before I can communicate effectively.
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Turn that off, introduce yourself, on and on.
So situational awareness also attends to individual lived experience and recognize
in situational awareness that there's a power dynamic and we in our white coats,
if you wear them, I understand there's a picture taken today,
So a lot of you have your white coats. I never wear mine anymore.
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But in our white coats, there's this esteem and power, especially if we're standing
at the bedside and a patient's lying in the bed.
Anybody been a patient in the hospital laying in the bed?
Yeah. What do you do? You look up. You're totally dependent. You're vulnerable.
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You're not eye to eye. and so
this power imbalance can be viewed again
paying attention to the room or at least it
has to be realized before you start to speak with that parent realize that there's
a power imbalance and really we need to diminish that so that we can attend
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to the common goal of the health and well-being of their child sit down maybe
even take your white coat off before you go see them.
That, you know, individual hospitals have rules about whether you do that or not.
I like this. I'm a visual learner, and I like this diagram that was published
in the Journal of Perinatology.
It had to do with prenatal diagnosis and communication, but strip that away
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and look at the dynamic that's pictured here, and you'll have a lesson to take home.
Effective communication needs to be honest, timely, personal,
empathetic, detailed, and straightforward.
That means we don't beat around the bush, but we use compassionate terms.
We attend to people. We're timely. I don't find out what this MRI is today and
(34:42):
wait until next week to tell the parents.
In fact, today, they're on the portal, aren't they?
You have the portal, right? Parents can. So they will see the MRI report the next day.
And they're wondering why he hasn't called them and told them what it means.
Honest, hopefully, detailed. How detailed?
(35:04):
It depends. You have to ask. Are you a big picture person or you like all the
fine details and granularity? And then you respond accordingly.
So if you're doing things to make communication effective, what you're also
doing is increasing the confidence that the person you're speaking with has in the individual.
They will know that that you're doing these things. And they will think,
(35:27):
ah, she really respects me.
She's telling me the truth. She's telling me as soon as she knows.
She's given me plenty of detail.
And she's pretty straightforward. She's not beating around the bush, but she's not me.
And what happens then is the parent develops this relationship and connection
to the healthcare professional,
(35:48):
which ultimately leads to their improved coping, coping, how they're going to
contend with the situation.
You facilitated coping and sometimes the problems we have in ethics are about
people that don't have good coping skills and I don't get why they don't understand
or why they're falling apart and I'm trying my best.
(36:09):
This bond has not been created.
Effective communication can build that bond. So ethics, all about decision-making,
communication, feelings.
You and I think a lot, perhaps. Sometimes people think doctors are nerds. I am one.
I read a lot, and I talk about this kind of stuff.
(36:31):
But parents think also. They may think differently. In fact,
the two of you may be discordant in the manner in which you think.
Perhaps you're very analytical. Doctors are guilty of that.
Perhaps you're very ethical and have moral inclinations as you think.
Or maybe you're hypothetical.
What if? If remember those commercials that Hewlett Packard had years ago,
(36:53):
what if people didn't ask that question, we wouldn't have the wonderful things
that we have a lot. People were hypothetical.
They put forward ideas, but some people are afraid.
I think everything's out to get them scary thinking, or some people are just plain practical.
I'll do what makes sense. Don't give me all the fluff.
(37:16):
Some of us are reflective at the end of the day. we reflect on what transpired,
we accomplished, what we might do better tomorrow.
But not everybody's reflected.
And again, some sense judgmental thinking.
So these things encroach on our ability to communicate effectively and impact
(37:38):
ethical decision-making.
Framing effects and default options I've already talked about.
Shared decision-making.
Who practices shared shared decision-making. Every hand should go up.
We try. We try. We hope. We try. We ask the question, what is?
If we communicated and we listened and we incorporated parent values,
(38:03):
and those that know patients over a continuum have the great benefit of knowing what's important,
and can then make recommendations.
So I go see my internist for blood pressure. He says, okay, Brian,
you have blood pressure problems. Here's six medicines. Choose one.
Is that what you want? No.
(38:25):
He knows who I am, what's important. He says, you know, knowing you were taking
care of you for the last 10 years, I would recommend this one. Let's try this one. Why?
Because it has this side effect profile and it doesn't do that and it doesn't
interact with other medication you're taking. Oh, okay, thank you for all that consideration.
That's actually shared decision making, a recommendation, understanding means
(38:47):
to the person, and we mutually decide on what the best thing to do is.
First time it didn't work, right? I took a calcium channel blocker and it worked
for blood pressure, but I had ankle swelling.
And I went back to see him. I said, what's this up with my ankles this way?
He said, you know, 1% of people on calcium channel blockers will have ankle swelling.
(39:08):
I didn't know that. So I was in the lucky 1%, got rid of that.
I'm on an ACE inhibitor. Everything's fine, but 1% of people on ACE inhibitors have a dry cough.
Don't have that. I'm glad. So trial and error, making decisions together, that's our goal.
And we can do it in a personalized manner that empowers our parents and or individual patients.
(39:34):
Taking into consideration their varied preferences. Some people are,
you know, and really wanting to deliberate.
Other people are, can you just tell me what's right, doctor? You know me.
Anybody been asked this question?
How certain are you, doctor? This is a great paper I would recommend everybody to read.
(39:55):
It's one page front and back, so two pages.
Pediatric critical care medicine. These are two psychologists in Australia that
work in the ICU ICU to help patients and families and to help staff.
And they acknowledge the fact that when parents have a child admitted to the
(40:17):
ICU, they're afraid, reasonably so.
But physicians are afraid too. Would you consider that? Takes a little bit of
intellectual honesty here.
But sometimes we're We're afraid to answer parents' questions truthfully,
we're a little bit evasive, we're not real comfortable with uncertainty, so we deflect.
(40:41):
Well, we can do this and we'll see what happens next week.
So and so is coming on next week and she doesn't believe the same thing I do,
so you'll have to renegotiate with her.
This is the system we've built in ICU medicine all around the world.
I've been to Singapore and Malaysia and Colombia and Guatemala and Europe,
(41:03):
half a dozen countries in Europe and South Africa.
And this happens all around the world in ICU medicine.
That's a system problem that gets in the way of good communication. And prognostication?
Well, who's a good prognosticator in pediatrics?
(41:24):
Oncologists. Oncologists got smart years ago. They shared data.
They pooled research to develop the right protocols.
And they were then able to prognosticate
outcomes for children based on a diagnosis and a treatment plan.
The rest of us are late to the game. In neonatal medicine, it's only been the
(41:48):
last 10 or 20 years that we've attended to large population outcome on certain diagnoses.
Now there's a congenital diaphragmatic hernia outcomes group.
There's a hypoxic ischemic encephalopathy outcomes group.
There's a BPD study and outcomes group.
(42:08):
Cardiology, same way with different congenital heart disease.
But we've ignored prognostication and spent a lot of time on diagnostics and therapeutics.
So we've created this situation of poor capacity, capability,
or inclination to consider prognosis.
(42:29):
That's what parents are asking about. How certain are you, doc?
And then there's the fact that many doctors think, well, are you absolutely certain?
You have 100% confidence that this is going to happen. we're looking for scientific
certitude when we're dealing with a clinical practice that doesn't require absolutes.
(42:51):
So we have reticence again.
I have a family member who has myasthenia gravis and she's seronegative.
The antibodies that you check for that aren't in her bloodstream, him.
But her clinical presentation is absolutely weakness with repetitive movement,
(43:12):
name the extremity, going up and down stairs, combing hair, stirring in the kitchen.
But the neurologist said, I can't be absolutely certain that you have myasthenia gravis.
Well, turn to the literature, 20% or seronegative. It's a clinical diagnosis.
But that neurologist wants 100% servitude.
(43:35):
We shouldn't act that way because life isn't lived that way.
Parents really expect us to give them what we know based on our education and
experience and the experience of others, gleaning things from the evidence base
and the literature and convey that.
They don't expect They expect perfection, they expect your best effort,
(43:57):
your best clinical judgment.
So sometimes how certain are you is a question we can't understand because of
the constructs that we live in in critical care medicine.
Doesn't mean we can't overcome it, just means we need to attend to it.
What about technology? I already alluded to pulling another machine out of the closet.
(44:21):
Great article, excuse me, book from back in the 90s, Neil Postman,
who wrote in the 80s, Amusing Ourselves to Death. And it was all about television.
And then technocly, which is more towards computers and technology thereafter.
And this quote I excerpted from that book, I think is important.
Embedded in every tool, doesn't matter if it's a feeding tube or a ventilator or an ECMO unit.
(44:47):
And every tool is an ideologic bias, a predisposition to construct the world
as one thing rather than another.
The world is better with ECMO. I have ECMO, Ergo, I'm going to use it.
The world is better having this machine or this medication or this healthcare system. system.
(45:08):
We've put our trust in technology and systems.
And somebody asked if there's a technological imperative in healthcare,
what would your answer be? Yes.
Yeah. So we have it, there we go, we have to use it, right?
So how is that imperative meted out? This is the best article from a journal you've never read.
(45:30):
And it's entitled, Is There a Technological Imperative in Healthcare?
By Jorn Hoffman, who's a philosopher in Oslo.
The International Journal of Technology Assessment in Healthcare, 2002.
Examples of the imperative. Well, there's a possibility that it might work, so let's try it.
(45:52):
Well, we can't stop doing this. We've been trying for so long.
We can't stop now. We're committed.
Well, this is a pretty complex procedure. I learned how to do it,
so here I am, ready and able. Let's find a patient I can do it on.
There's quite a demand, especially from an informed public.
Dr. Google says, Edscape says, WebMD says.
(46:17):
So the informed patient or family is going to say, well, what about ECMO, doctor?
I read on Dr. Google that these patients with CDH benefit from ECMO.
And what do we have to do? Interpret.
That's that situation.
This is your child.
(46:38):
And we have to then acknowledge that there's a demand from the public to do
certain things, but there's an equal demand from those of us in practice.
My colleagues all think I should do this. I'm not certain, but I'm feeling the
pressure, peer pressure, and a demand that we should, in fact, do that.
So Hoffman goes on and on, and I certainly would recommend it.
(46:59):
I've recommended it for 20 years now.
And yet the realization is from Aaron Cobb, a philosopher at Auburn,
who himself is a parent of a now-past child with trisomy 18.
All technology limps. I thought, wow, that is a powerful statement.
(47:21):
All technology limps. It's imperfect. perfect.
Nobody's gotten off the face of the earth alive. We all are subject to our finitude, our own mortality.
So no one's found a permanent means to avoid injury or death.
Technology is great, but it's not the BDL.
Five minutes. Thank you. And the other fact here is technology is amoral, not immoral.
(47:46):
It's amoral. It has no moral sense. It's a machine.
So where Where does the morality or the good ethical use of technology come into play?
Who uses it? When and how and for how long? And that means you and I.
The ethics of the use of technology rests in us, not in the machine.
(48:12):
So we have to be careful. We need to know what patient, when,
how, and for how long, and by whom we would be able to measure benefit or harm.
Another term from psychologists that I think impacts our practice and perhaps
our abilities to make decisions with and for families is affective forecasting.
(48:35):
That means, oh, your child has this condition. We're treating this way.
That means six months, six years down the road, this is what's going to happen.
Anybody ever thought, oh, this child's condition, it tears up families,
chronic complex illness.
People get divorced. Families fall apart. people go bankrupt.
Well, some people do, but the majority do not.
(48:58):
In fact, even as tragic as it is, the loss of a child does not break more families
than would otherwise have been broken.
The same is true with the loss of a spouse in the adult world.
People in the hospice industry, if you will, have paid attention to that very fact.
No, it doesn't work that way. It's tragic when it happens, Yes,
(49:20):
but we're in a society where 50% marriages fall apart.
So it's our affective forecasting. That's just one example.
So the child's going home with a trach and a G2.
Your whole life is going to be disrupted. The child's development is going to
(49:40):
be X, Y, Z, what have you. And what happens?
Those of us that do NICU follow up, we see the child six months,
nine months later. it's a different child and it's a different parent.
People have grown together.
If we just focus on what's not right, we don't pay attention to all the things that are.
(50:01):
And we also have what's called immune neglect, and that is the ability for people
to rise to the occasion and buffer themselves from emotional suffering.
And then again, the fact that people adapt. So affective forecasting can get
in the way of good communication and shared decision-making.
I won't spend time on this slide which is about the palliative paternalism.
(50:26):
When there are maladaptive coping risks for any of these reasons,
it may be that counseling, even by the palliative care team,
moves from non-directional to a little bit more directional because the the need is there.
But this takes a lot of time and energy to sift through, and you have experts
(50:48):
here that can help you with that.
I'll close with this last couple of slides. Stephanie Kukora and Rene Boss put
together this wonderful paper.
And you don't have to be a neonatologist looking at this.
You can substitute any other condition that may have situational outcomes considered to be bad or good.
(51:08):
And the clinician may perceive that a high likelihood of non-survival paired
with a high chance of moderate to severe impairment is dismal.
And a very low chance of the desired outcome of intact survival.
So we tend to weight things down with all of these adverse considerations.
And with regard to statistical probabilities, we then communicate this to a family.
(51:35):
But how do families see it? A little bit differently. Parents might view these
outcomes differently if any survival is better than no survival at all.
And if having a surviving yet impaired child is considered the most undesirable
outcome, the fact is most of those children don't survive long and may not even
survive in the neonatal ICU or the pediatric ICU.
(51:58):
And then finally, if dying following intensive care is perceived as more favorable
than possibly missing an opportunity to have had an intact, don't like the word, intact survivor,
the risk of an unfavorable outcome falls to zero. In other words, please try.
Don't withhold this. At least try.
(52:21):
And then we can learn together and I can write my story and feel like I lived
up to my parental responsibilities.
And yes, I'll accept the passing of the child.
So this decision tree, I'll leave with you. We won't walk through it,
but it makes sense. Hello.
OK, there you go. and the slide set you'll have.
(52:44):
So we can look at a case, and we're running out of time, so I'll just leave this with you.
Here's a child that has complications leading to the need for therapeutic hypothermia,
has a flat EEG, fixed and dilated pupils.
Things don't look real good.
How do you make a decision? Anybody familiar with Johnson,
(53:06):
Siegler, and Winslade's four box, which is
here is very common they use clinical ethics
the journal excuse me the the book that this comes from now
in its ninth edition Al Johnson has
passed Mark Siegler's in his 80s in Chicago and William Winslade I think is
still in Galveston but these gentlemen put together this four box approach and
(53:29):
I'm in the process of working on modulating it to become relevant for children
but But medical indications,
parent or guardian preferences, quality of life, and contextual features.
These things help shape our career vision.
Alluded to the zone of parental discretion, and ultimately this mom asks for
(53:49):
an ethics consult because she doesn't want there to be a G-tube and take the
child home in such dire circumstances.
And that then leads us to how do we work through the case? So here's a 10-step method.
It's not terribly difficult.
Identify the ethical question. What is it we're trying to answer?
(54:10):
What facts do I need to gather and understand?
Are best interests clear? How would you balance burdens and benefits?
And that's a dialogue with family.
Who can inform us and who is the decision maker? Are there societal or ethical norms to appeal to?
Are there statements from the academy or other professional bodies that say
(54:32):
this is acceptable or this is recommended?
What strategy should we use going forward?
What issues need attention with the care team? So don't ignore the team. make a recommendation.
It's not make a decision for the clinician, make a recommendation so the clinician
benefits from this process.
And I always leave references, often academy statements, but not always.
(54:57):
And then determine if follow-up is necessary. Ethics consults aren't always
once done and over, especially in pediatrics. There may need to be a continuum.
I thank you for your time. I'm sorry we got rushed towards the end.
If any of you are interested in taking our bioethics certificate course,
which is pediatric bioethics, Glenn's taken it, and it's the only one in the world.
(55:22):
Kansas City, give me a shout out. Thank you.
Thanks so much for listening to that interesting talk.
Don't forget to click on the link in this podcast for ethics credit.
I'm Holly Wayman. Thank you so much for listening.
Our website is pediatricsnowpodcast.com.
(55:46):
I wanted to tell you about our new podcast we've created for your patients and
for the parents out there.
It's called Pediatrics Now for Parents, health news in small bites in about 10 minutes or less.
But we hope it's one less thing you have to cover in the exam room.
That's Pediatrics Now for Parents, anywhere where you get your podcasts.
(56:10):
The website is pediatricsnowforparents.com.
Music.
(00:05):
Podcast for ethics credit. Today, I'm bringing you Grand Rounds,
how to work through a clinical ethics problem, one ethicist's approach.
Today, we'll hear from Dr. Brian S. Carter.
He's interim director at Children's Mercy Bioethics Center and Division of Neonatology,
(00:25):
Children's Mercy Hospital.
He's the chairman and endowed professor in the Department of of Medical Humanities
and Bioethics, Department of Pediatrics at the UMKC School of Medicine.
Dr. Brian Carter has been in practice as a neonatologist for 40 years.
He's authored more than 200 peer-reviewed manuscripts and book chapters and
(00:48):
is a frequent speaker at academic institutions in North America and internationally.
Let's listen in to Dr. Carter.
To pediatrics is instead of the term autonomy, the principle that talks about self-direction.
Being able to choose for yourself what it is that you want, children,
(01:09):
by virtue of their developmental capacity, are not really able to speak to their own autonomy.
Now, adolescents and young adults certainly have emerging autonomy.
But when we talk about parents making decisions for and with their children,
it's not the parents' autonomy, it's their authority vested in them through
(01:30):
history and society and the law.
Basically, the authority that the parent has to speak for the child.
That's different from parental autonomy, which is they're choosing what they
want done for themselves.
So this is already a twist, if you will, to the uniqueness of pediatric theatric ethics.
On the right-hand side, I list four or five virtues.
(01:53):
There are many virtues. Many of you may have learned them growing up from your
parents, from your faith community, maybe from philosophical learnings of Aristotle.
The first virtue, moral courage.
If one does not have the moral courage to identify a problem and speak to it,
(02:14):
all of these other virtues really don't obtain.
So you have to be able to, we today say, see something, say something.
That's a reference to moral courage. See something that's amiss,
say something and try to address it.
There's also pediatric bioethics considerations that are different because,
(02:37):
as I've already alluded to, the dynamic nature of the developing child.
That's one of the reasons we go into pediatrics, right? Kids change.
Those in practice in the community may already be taking care of the children
of children that you cared for.
You have this transgenerational continuum. continuum in
neonatology we don't do that until maybe you
(02:59):
know a second baby to the same couple comes along and requires the intensive
care unit but at some point the developing child will need to be able to contribute
to decision making and this varies as you know across families across capacity
of individual children.
And I think that being attentive to that evolution and knowing when it's the
(03:25):
right time to hear the child and have them contribute to decision-making is, it's a type of finesse.
It's sort of akin to clinical judgment that you can make in the hospital.
But being able to do that and allow for that, I think it's a great contribution
that that pediatricians can make to the development of a sound family unit,
(03:47):
as well as the development of an individual.
Member of society, an adult who is going to be able to speak for themselves
and contribute in many ways.
We know that the ever-present voice and role of the parents is unique in pediatric medicine.
In adult medicine, unless one has cognitive capacity problems,
(04:09):
dementia, and otherwise, the surrogate decision maker is rarely brought in.
But in pediatrics, we always contend with the surrogate decision maker,
namely the parents or legal guardian.
And what guides us, in addition to principles and virtues, is this precept of best interest.
(04:31):
Raise your hand if you've ever had contention with those that you work with
about what's the best interest for this child.
It's part and parcel to what we do, especially in hospital medicine,
but even in In outpatient medicine, the best interest of the child might be
contested by the parent, or it might be that the child thinks differently from the clinician.
(04:55):
So on and on, this best interest really requires, it demands, a lot of attention.
I use this diagram, compliments of Mark Blyton, a PhD ethicist I worked with
at Vanderbilt who's now retired in Southern California.
To help us situate where an ethical concern might lie.
(05:17):
Now in the center there, you see a parent holding an infant.
And more times than not, this first layer, this individual interface between
parent, mother, father, child, maybe even the fetus in a pregnant patient,
and we're talking about fetal diagnostics and counseling.
A lot of what clinical ethics has really attended to over the last 40 years
(05:41):
has been this individual clinician-parent or clinician-patient interaction.
So what's the best interest with a child? But I would well imagine working in
hospitals, you've also found that there are times where there is discrepancy
or discord within a hospital team. team.
(06:03):
Primary clinician says this, the consultant says that, the nurse says this,
the social worker wonders about something altogether different.
And so what I see here and want to communicate in the second layer is role-related
phenomena of interdisciplinary team members.
And ethics issues arise in that setting as well.
(06:26):
The role-related might even extend to the extended family.
Grandmama's in the background saying this, that, and the other.
If you do this for this child, then whatever's going to happen.
The most demonstrative example I could give you is once I had a child in the
NICU who had terrible birth defects and was on life support and was staling
(06:50):
and we counseled the mother that we would recommend withdrawal from life-sustaining therapy.
We engaged palliative care we set aside a time that was designated by the mother
we were moving the child from the icu to a parent room for privacy and grandmama.
(07:13):
Wagging her finger as we were leaving that bed site if you take that child off
the ventilator you're going to go to hell.
We did a 180, went right back to the bed space, made sure that everything was okay.
And we had to start all over again.
I imagine you've had similar experiences. And unless you have the person who's
(07:37):
the decision maker in the room,
you can't really put confidence necessarily in a decision that's made because
there are external voices and powers that will The third layer here,
we all work in hospitals or health care systems.
There are certain ethical issues that come up within hospitals and health systems,
(07:58):
that really reflect what's referred to as organizational ethics.
Anybody in a leadership capacity has to contend with this.
The organization has these policies and procedures, or we need to develop these
guidelines and return to certain leaders, return to evidence,
return to expert opinion, and glean things from the literature,
and we try to set forth best practice.
(08:20):
But it's all done within a philosophy of care, whether it's public health,
charitable health, religious health system, again and again,
organizational ethics.
And most of us trained in medical ethics do not have expertise in organizational ethics.
(08:41):
And we need to acknowledge that and seek additional training.
So there are now possibilities to get a master's degree in organizational management.
Not a bad idea if you want to do that. Healthcare administration,
an MBA, and you could have a focus in ethics within that study.
(09:03):
But that's somewhat new and different.
And then finally, we all live in jurisdictions called counties,
states, and the United States.
So there may be local regulation, there may be state law, and there may be federal
law that we have to work under and with.
So that's the fourth layer there.
(09:26):
So when someone comes to you and says, I have this problem, why are we taking
care of this 23-weeker in the NICU?
If we didn't take care of those babies, we could save so much money and vaccinate
hundreds of kids. Do you see where we're crossing lines from the center to the
third layer, maybe even the fourth layer?
(09:47):
Yes, that's an ethical problem. But the resolution of that problem is not situated
with this baby at the bedside.
It really rests with a more global macro ethics outlook and requires engagement. engagement.
So, principles, virtues, best interest, situating where the ethics problem exists.
(10:11):
Anybody here heard of care ethics? Any nurses in the field here?
Nurses oftentimes are speaking about care ethics.
Interesting origin to care ethics from two ladies back in the 80s.
One was an educator, educational philosopher, as it turns out. That's Nell Moddings.
(10:33):
And the other, a psychologist who really addressed...
Kohlberg's child development and challenged it because it was predicated on white boys.
Think about that. How we learn child development all came from following the
development of little white boys.
(10:54):
Well, we're all not little white boys, are we?
And so our children may have differences in their psychological development
just because they're girls, not boys.
They're people of color, not white. and she
made this challenge in 1982 and if
you look at this timetable 82 84 here this
(11:15):
was a big departure if you will
from old white men mainstream psychology and
education starting to bring into focus what was originally called feminist ethics
because it was raised by women and dealt with this very phenomena that relationships and stories matter.
(11:39):
Now, if you're a pediatric healthcare professional, you know that relationships
matter. What's one of the prime ones?
Mama and baby, daddy and daughter, relationships that are valuable,
that really guide people in their decision-making and what's important.
It helps establish values. values.
And so not only is the relationship important, and you have to attend to that,
(12:04):
but you actually need to dissect it a little more and hear the story behind the relationship.
Why is this relationship important? It's not just because they're a parent.
It's because they've endured whatever facet of life. They've had experiences.
They have shared values. And so So from that, these ladies guided us to move
(12:25):
away from what might be cold,
objective, principled bioethics to a little bit more kinder, gentler, friendly,
relation and care and compassion-based.
So this is in the background and often not attended to. But when yours truly
gets asked to do an ethics consult at Children's Mercy, I tick little boxes
(12:50):
off principles, virtues, relationships, narrative.
All of those things should guide an ethics analysis of what's the right thing to do for this child.
Not just a singular principled approach or virtue approach.
Is that understandable? understandable so it makes sense it makes
(13:11):
sense to me or i wouldn't have put it together for you today now how many of
you have heard from a parent i want you to do everything about all right do
everything you know what that is that's an invitation to ask but what does everything mean.
Everything imaginable everything covered in your health care plan everything
(13:35):
that's reasonable everything that's beneficial,
but does not impose new burdens or harms, that requires a conversation instead
of, oh yes, we'll do everything.
Well, everything to an intensivist means something altogether different than everything to a family.
Intensivist, I am one, guilty. If something's not working, you just go pull
(13:59):
another machine out of the closet and try that one, right?
Or you ask Ask the consultant from wherever to come down and help you with this case.
That's not exactly what parents are asking for. They want your clinical judgment.
They want prudence, which is a virtue, wisdom in action.
They want you to be able to think. And I would say the challenge here,
(14:22):
this is a matter of empathy.
The challenge here is to imagine what it's like to be me in this situation and
what I need or want for my child.
Not necessarily what would you do for your child?
Oh, that might be a close approximation.
But imagine what it's like to be me. That's an invitation to empathy.
(14:47):
And that then can guide us. So sometimes parents' demands for everything might
just reflect the fact that I want to be a good enough parent.
And a good enough parent will insist that every stone is turned over,
every opportunity is visited.
But if we want to know, we have to ask.
And the problem with asking is then you have to listen.
(15:10):
And as my eldest child says, well, Dad, listening is no fun. I'd rather be talking.
And he does. Thank you.
Another way to look at this, and this is guidance that came to me in my training
in palliative medicine, was realizing that that narrative that we spoke about
before and this concern to do everything,
(15:33):
this desire to be a good enough parent, might be a need to acknowledge the fact
that each of us as parents, as healthcare professionals, we're writing our story.
This is the story of our lives this is what we do we get
up in the morning we love what we do we actually feel
like we've made a contribution of good i hope that's the way you
(15:55):
feel psychology you know
is well i remember the things i didn't do today
or i wish this had happened instead of that and we tend to focus on the negative
but you're doing a great good every day so they're writing their story just
as you're writing your story and when we're talking about end-of-life care or
(16:17):
critical care and the risk of end-of-life,
they have to be able to construct a story that they can live with if the child does not survive.
And it would be an act of hubris if we presumed that it was our story to write.
Instead, we should sit with them and perhaps have the honorific of being asked
(16:40):
to co-author it with them.
But we don't demand that this is is the story you're going to live with.
So again, narrative encroaches on how we make decisions and work with families.
This picture is used with permission of parents, Tom and .
(17:01):
Oh, gosh. Common forgetting mom's name. French.
And this is little Juniper Junebug. If you're interested, I have no conflict
with this, and I have the parent's permission to tell this story.
Juniper, the girl who was born too soon. It's a book you can read.
Very interesting story. Kelly, French.
Interesting story about assisted reproductive technology, extreme prematurity,
(17:27):
six months in the hospital. And I know little Junebug.
She's now like 12 years old, rides horses, dances, beautiful little girl.
But this, being a neonatologist, is like a picture of an ethical dilemma that's unfolding.
(17:48):
And you have your own with regard to your own specialties, I'm sure.
So I'll talk a little bit about challenges in perinatal health care ethics.
I think one of the first of which is this idea of periviability.
Can anybody tell me what periviability is? It's a precise definition.
No, there isn't a precise definition.
(18:08):
At least it can be argued because it depends on who you ask.
Are you asking a parent who is on the cusp of delivering a child at 22, 23, 24 weeks?
Are you asking public policymakers?
Are you asking parents? Or health care professionals.
And is that health care professional someone that actually works in the world
(18:31):
of neonatology and obstetrics?
Or is it somebody that, well, I'm a developmental psychologist,
and I think that those things shouldn't happen because these kids have problems.
Well, some do, but many don't. And you can't tell on the day that a child's
born whether they're going to graduate with flying colors and have a two-year
(18:52):
Bailey exam that makes them just like everybody else,
or whether they're going to develop CP or have problems with learning.
It's just unknowable. Maybe that's part of the reason we can't define perivivalent.
We also need to pay attention to the sensitivity of goals and values held by individuals.
So we talked about some of those variances in goals and values,
(19:15):
but what's the right response?
If we're talking about care in an area where we can't absolutely say it's beneficial,
in which there would be no contest, we provide it, and we can't absolutely say
it's harmful, it falls in an area that's called the zone of parental prerogative or discretion.
(19:36):
And sometimes we would offer that, well, this child's condition is one that does not have a cure.
Perhaps it's complicated birth defects or genetics.
And we're going to provide comfort care. Glenn, what is comfort care?
It depends on who you ask again, right? And it depends on the family.
What do you mean comfort care? Isn't everybody getting comfortable care?
(19:58):
Why are you saying this is all my child gets? I want you to do everything.
So, healthcare ethics encroaches on neonatal, perinatal medicine, as you know.
What about the pandemic?
The pandemic gave us lots of time, a few years, to think about problems in ethics
(20:20):
that might be unique to pediatrics.
Did anybody experience a pediatric overwhelming hospitalization during the pandemic?
No. No. What did we actually do? I have friends at Montefiore in New York that
they turned their PICU into an adult ICU.
They got pediatric ICU doctors and pediatric clinicians of varied specialties to work in the ICU.
(20:47):
That wasn't their daily norm, but they did it in the middle of the crush.
And that happened in many places across the country. So we dealt with staff
equipment and allocation, but we also dealt with staff expertise.
I would not have wanted to have been an intern that year.
All of a sudden, I'm overwhelmed. And yet, being an intern or resident during
(21:13):
those three critical years,
there must have been a great advance and maturity and sense of confidence and
competence to be able to do the right thing in a terribly overwhelming situation.
So people stepped up, as you know, and there were health care professionals who died.
(21:34):
We also had to contend with uncertainty, which is the daily fare of hematologists
going back to perifiability.
But prognostication across different diagnostic cohorts, vaccine efficacy and
uptake, or whatever you might think, and I'm not a politician,
about what transpired during those years.
(21:56):
The fact that this country could create a vaccine in one year was just phenomenal, historical.
And Operation Warp Speed, I can't think of a better name for it. It just was incredible.
But then you have vaccine efficacy and you have contention over whether or not
(22:18):
we should actually use it or people agreeing to take it.
And if you're like me, you've probably had a couple and a couple of boosters.
I'm over 65. I have other risk factors, so, yeah.
But I still see families whose children graduate from the ICU,
five, six months in the ICU.
They have BPD. They're on oxygen.
(22:41):
They won't get a flu vaccine. They won't get a COVID-19 vaccine.
And they won't get an RSV immunoglobulin or monoclonal.
So I don't know. oh, I can't figure out how people think.
Maybe you can and you have, and I'd be happy to learn from you.
(23:01):
But that was one of the problems that we had that raised ethical issues.
Multi-inflammatory syndrome in children, both short and long-term outcomes.
What do we know? When do we know it? What are the ramifications?
And then ramifications. What about lockdown?
Everybody not going to school for the better part of the year.
(23:23):
Are you ever going to capture that year again, that year that was lost?
Generally speaking, no. We have to make accommodations thereafter.
The other thing that I looked at in this particular instance was was recognizing
that there's a paradigm shift in ethics in times of pandemic or crisis.
(23:46):
And unfortunately, I experienced this in 1991. I was at the wrong place at the wrong time.
Namely, I had just finished my fellowship in 1990 and got to move to Killeen,
Texas. It's not too far from here.
Fort Hood. I went to medical school on an Army scholarship. So there I was at
(24:08):
Fort Hood in July of 1990.
And, you know, we operated a 12 or 15-bit level 2 plus short-term ventilation.
Everything else got sent to San Antonio, typically Brook Army.
But everything was peacetime, like in the top triangle.
The principal focus of ethical concern is between physicians and patients.
(24:32):
There's not a lot of interaction between physicians and society and patients
in any particular obligatory sense to abiding by anything other than common law.
And so the individual well-being was where ethics was centered.
And this is true in peacetime, like even now. But in war, and I was a medical
(24:54):
company commander in the Gulf War, I realized that if you use this today,
it's not going to be around tomorrow.
You had to practice conservation.
You had to have an eye towards frugal use of what's necessary and not be wasteful at all.
And when a unit a military unit
(25:16):
moves as we did not terribly infrequently
you have to pick up everything and go and so you have to make sure that you've
got enough you use it wisely because the supply chain to get more of it whatever
it is beans bullets medication fuel all of that stuff of what we call logistics,
(25:38):
the logistics train, would follow behind the killers, if you will.
It's a hard thing to think about, but I realized that that primary ethical concern
between the individual patient and the physician was eclipsed by greater concerns
that we had to the common good.
(26:01):
Military unit, and also society who had asked us to be there,
and the individual members of the the military that I was serving also had to
answer to a chain of command.
And so the primary focus of the individual broke down and you actually subjugate
(26:22):
your individual autonomy in the military to the greater good.
Well, it was that vision, that reality that helped me look at the pandemic in a very similar manner.
That concern for the public's well-being and arguably even the preservation
of the state eclipsed individual patient well-being.
(26:44):
So operant precepts of ethics were solidarity, conservation.
We had to learn to work together, live together, work and save for the future.
We've reverted now back to the top triangle,
but I think the lessons that we've learned from the bottom triangle should stick
(27:04):
with us because it revealed that we have a broken and public health system,
and we need to do better. Anybody know who this gentleman is?
It's a famous playwright, George Bernard Shaw.
This quote at the bottom of the slide is from him.
And I first found it on an email tagline of a friend in college,
(27:28):
Rene Voss at Johns Hopkins, another neonatologist and palliative care and ethics expert.
The single biggest problem in communication is the illusion that it has taken place.
Well, I told them. I don't know why they don't get it. I've seen them every
day and told them the same thing. I think they're just in denial.
(27:48):
Maybe that's our bias. Maybe we're not really listening.
Maybe there are cultural or linguistic, even racial, interference.
Maybe it's the way I frame things. I'm always talking about the negative.
It. Did you know your baby's so sick that they might die?
I don't want another doctor to come by and tell me how sick my baby is.
(28:09):
I want a doctor to come by and listen to me and let's just talk.
Or at this institution, this is what we do in this situation.
It's the default option. There's no discussion. This is just what we do.
So we frame things and we communicate through all of these different filters, if you will.
And then when we walk away, we might think that communication has actually taken
(28:32):
place, but indeed it has not. So thank you, George Bernard Shaw.
Communication has more than the singular information exchange to it.
Physicians are really good at informativeness, giving information,
almost to a fault, overload.
But if we've learned anything through the last few years, don't expect that
(28:57):
all facts will be heard and accepted as truths. truths.
In order for a fact to become a truth, I have to incorporate it into my sense of value.
Parents teach adolescents, right? The adolescent has to incorporate whatever
the parents are teaching into who they are and what they believe and now the
(29:18):
way they act. The same is true here.
There's a second part of communication called attunement. And I pay attention
when I'm speaking to, you know, are people paying attention?
Are they looking and listen, you do the same thing even one-on-one, right?
We have what's called mirror neurons in our prefrontal cortex.
(29:39):
They allow us to see and regard the human face.
And in the same time, without thinking about it, we mirror the facial expression.
I scratch my ear, you scratch your ear. I go like this, maybe you don't have
a beard to stroke, but you might put your hand up to your your face.
You lean in, I lean in. Go like that, I go like that. This is how we get along. Anybody have a dog?
(30:06):
What does a dog do when you're eating?
They want to eat what you're eating, right? It's part of the mammalian construct of the brain.
In higher order mammals, it's present and we pay attention to it.
And there are children that don't have that near capacity. capacity.
(30:27):
You know what we call those children?
Autistic. They're on the autism spectrum. And you know that because you interact
with them and they never look at you.
They regard things more than you do human face.
And if you attend to children, you can anticipate that even before they're two
or three years old. You can diagnose autism before two.
(30:50):
If in fact, all we do is attune and get involved in this interpersonal sensitivity.
Yeah, we're just being polite. So you have to do the first two together,
information exchange, attunement.
And then the third part, and this is our greatest challenge in communication,
(31:10):
is partnership building.
What is the end result of communication that we're striving for?
Building trust, and being able to make decisions together, shared decision making.
So communication needs these three steps or you may not accomplish the objective.
Don't get hung up on number one, especially young people, because you learn it from old people.
(31:37):
But we're really good at information. In fact, I told people,
you know, rounds can be just a day to dunk. don't.
Here's all the data. Do something with it. Well, that's not communication.
We need to focus on relationships. And if we do that, we're actually respecting
autonomy, the individual character of the people that we're speaking with.
(32:01):
So instead of just, here's the task, here's the objective, try to understand
the individual patient's lived experience, going back to the narrative again.
And this is how communication can be built in a manner that contributes to self-determination
and situational awareness.
I try to teach my medical students situational awareness.
(32:24):
When you walk in the room, it doesn't take 10 seconds to take it all in.
Patients here, bedpans there, respiratory treatment stand over here for the a COPD patient.
TV's on, cell phone's in hand. I have a few things to do before I can communicate effectively.
(32:47):
Turn that off, introduce yourself, on and on.
So situational awareness also attends to individual lived experience and recognize
in situational awareness that there's a power dynamic and we in our white coats,
if you wear them, I understand there's a picture taken today,
So a lot of you have your white coats. I never wear mine anymore.
(33:10):
But in our white coats, there's this esteem and power, especially if we're standing
at the bedside and a patient's lying in the bed.
Anybody been a patient in the hospital laying in the bed?
Yeah. What do you do? You look up. You're totally dependent. You're vulnerable.
(33:30):
You're not eye to eye. and so
this power imbalance can be viewed again
paying attention to the room or at least it
has to be realized before you start to speak with that parent realize that there's
a power imbalance and really we need to diminish that so that we can attend
(33:52):
to the common goal of the health and well-being of their child sit down maybe
even take your white coat off before you go see them.
That, you know, individual hospitals have rules about whether you do that or not.
I like this. I'm a visual learner, and I like this diagram that was published
in the Journal of Perinatology.
It had to do with prenatal diagnosis and communication, but strip that away
(34:16):
and look at the dynamic that's pictured here, and you'll have a lesson to take home.
Effective communication needs to be honest, timely, personal,
empathetic, detailed, and straightforward.
That means we don't beat around the bush, but we use compassionate terms.
We attend to people. We're timely. I don't find out what this MRI is today and
(34:42):
wait until next week to tell the parents.
In fact, today, they're on the portal, aren't they?
You have the portal, right? Parents can. So they will see the MRI report the next day.
And they're wondering why he hasn't called them and told them what it means.
Honest, hopefully, detailed. How detailed?
(35:04):
It depends. You have to ask. Are you a big picture person or you like all the
fine details and granularity? And then you respond accordingly.
So if you're doing things to make communication effective, what you're also
doing is increasing the confidence that the person you're speaking with has in the individual.
They will know that that you're doing these things. And they will think,
(35:27):
ah, she really respects me.
She's telling me the truth. She's telling me as soon as she knows.
She's given me plenty of detail.
And she's pretty straightforward. She's not beating around the bush, but she's not me.
And what happens then is the parent develops this relationship and connection
to the healthcare professional,
(35:48):
which ultimately leads to their improved coping, coping, how they're going to
contend with the situation.
You facilitated coping and sometimes the problems we have in ethics are about
people that don't have good coping skills and I don't get why they don't understand
or why they're falling apart and I'm trying my best.
(36:09):
This bond has not been created.
Effective communication can build that bond. So ethics, all about decision-making,
communication, feelings.
You and I think a lot, perhaps. Sometimes people think doctors are nerds. I am one.
I read a lot, and I talk about this kind of stuff.
(36:31):
But parents think also. They may think differently. In fact,
the two of you may be discordant in the manner in which you think.
Perhaps you're very analytical. Doctors are guilty of that.
Perhaps you're very ethical and have moral inclinations as you think.
Or maybe you're hypothetical.
What if? If remember those commercials that Hewlett Packard had years ago,
(36:53):
what if people didn't ask that question, we wouldn't have the wonderful things
that we have a lot. People were hypothetical.
They put forward ideas, but some people are afraid.
I think everything's out to get them scary thinking, or some people are just plain practical.
I'll do what makes sense. Don't give me all the fluff.
(37:16):
Some of us are reflective at the end of the day. we reflect on what transpired,
we accomplished, what we might do better tomorrow.
But not everybody's reflected.
And again, some sense judgmental thinking.
So these things encroach on our ability to communicate effectively and impact
(37:38):
ethical decision-making.
Framing effects and default options I've already talked about.
Shared decision-making.
Who practices shared shared decision-making. Every hand should go up.
We try. We try. We hope. We try. We ask the question, what is?
If we communicated and we listened and we incorporated parent values,
(38:03):
and those that know patients over a continuum have the great benefit of knowing what's important,
and can then make recommendations.
So I go see my internist for blood pressure. He says, okay, Brian,
you have blood pressure problems. Here's six medicines. Choose one.
Is that what you want? No.
(38:25):
He knows who I am, what's important. He says, you know, knowing you were taking
care of you for the last 10 years, I would recommend this one. Let's try this one. Why?
Because it has this side effect profile and it doesn't do that and it doesn't
interact with other medication you're taking. Oh, okay, thank you for all that consideration.
That's actually shared decision making, a recommendation, understanding means
(38:47):
to the person, and we mutually decide on what the best thing to do is.
First time it didn't work, right? I took a calcium channel blocker and it worked
for blood pressure, but I had ankle swelling.
And I went back to see him. I said, what's this up with my ankles this way?
He said, you know, 1% of people on calcium channel blockers will have ankle swelling.
(39:08):
I didn't know that. So I was in the lucky 1%, got rid of that.
I'm on an ACE inhibitor. Everything's fine, but 1% of people on ACE inhibitors have a dry cough.
Don't have that. I'm glad. So trial and error, making decisions together, that's our goal.
And we can do it in a personalized manner that empowers our parents and or individual patients.
(39:34):
Taking into consideration their varied preferences. Some people are,
you know, and really wanting to deliberate.
Other people are, can you just tell me what's right, doctor? You know me.
Anybody been asked this question?
How certain are you, doctor? This is a great paper I would recommend everybody to read.
(39:55):
It's one page front and back, so two pages.
Pediatric critical care medicine. These are two psychologists in Australia that
work in the ICU ICU to help patients and families and to help staff.
And they acknowledge the fact that when parents have a child admitted to the
(40:17):
ICU, they're afraid, reasonably so.
But physicians are afraid too. Would you consider that? Takes a little bit of
intellectual honesty here.
But sometimes we're We're afraid to answer parents' questions truthfully,
we're a little bit evasive, we're not real comfortable with uncertainty, so we deflect.
(40:41):
Well, we can do this and we'll see what happens next week.
So and so is coming on next week and she doesn't believe the same thing I do,
so you'll have to renegotiate with her.
This is the system we've built in ICU medicine all around the world.
I've been to Singapore and Malaysia and Colombia and Guatemala and Europe,
(41:03):
half a dozen countries in Europe and South Africa.
And this happens all around the world in ICU medicine.
That's a system problem that gets in the way of good communication. And prognostication?
Well, who's a good prognosticator in pediatrics?
(41:24):
Oncologists. Oncologists got smart years ago. They shared data.
They pooled research to develop the right protocols.
And they were then able to prognosticate
outcomes for children based on a diagnosis and a treatment plan.
The rest of us are late to the game. In neonatal medicine, it's only been the
(41:48):
last 10 or 20 years that we've attended to large population outcome on certain diagnoses.
Now there's a congenital diaphragmatic hernia outcomes group.
There's a hypoxic ischemic encephalopathy outcomes group.
There's a BPD study and outcomes group.
(42:08):
Cardiology, same way with different congenital heart disease.
But we've ignored prognostication and spent a lot of time on diagnostics and therapeutics.
So we've created this situation of poor capacity, capability,
or inclination to consider prognosis.
(42:29):
That's what parents are asking about. How certain are you, doc?
And then there's the fact that many doctors think, well, are you absolutely certain?
You have 100% confidence that this is going to happen. we're looking for scientific
certitude when we're dealing with a clinical practice that doesn't require absolutes.
(42:51):
So we have reticence again.
I have a family member who has myasthenia gravis and she's seronegative.
The antibodies that you check for that aren't in her bloodstream, him.
But her clinical presentation is absolutely weakness with repetitive movement,
(43:12):
name the extremity, going up and down stairs, combing hair, stirring in the kitchen.
But the neurologist said, I can't be absolutely certain that you have myasthenia gravis.
Well, turn to the literature, 20% or seronegative. It's a clinical diagnosis.
But that neurologist wants 100% servitude.
(43:35):
We shouldn't act that way because life isn't lived that way.
Parents really expect us to give them what we know based on our education and
experience and the experience of others, gleaning things from the evidence base
and the literature and convey that.
They don't expect They expect perfection, they expect your best effort,
(43:57):
your best clinical judgment.
So sometimes how certain are you is a question we can't understand because of
the constructs that we live in in critical care medicine.
Doesn't mean we can't overcome it, just means we need to attend to it.
What about technology? I already alluded to pulling another machine out of the closet.
(44:21):
Great article, excuse me, book from back in the 90s, Neil Postman,
who wrote in the 80s, Amusing Ourselves to Death. And it was all about television.
And then technocly, which is more towards computers and technology thereafter.
And this quote I excerpted from that book, I think is important.
Embedded in every tool, doesn't matter if it's a feeding tube or a ventilator or an ECMO unit.
(44:47):
And every tool is an ideologic bias, a predisposition to construct the world
as one thing rather than another.
The world is better with ECMO. I have ECMO, Ergo, I'm going to use it.
The world is better having this machine or this medication or this healthcare system. system.
(45:08):
We've put our trust in technology and systems.
And somebody asked if there's a technological imperative in healthcare,
what would your answer be? Yes.
Yeah. So we have it, there we go, we have to use it, right?
So how is that imperative meted out? This is the best article from a journal you've never read.
(45:30):
And it's entitled, Is There a Technological Imperative in Healthcare?
By Jorn Hoffman, who's a philosopher in Oslo.
The International Journal of Technology Assessment in Healthcare, 2002.
Examples of the imperative. Well, there's a possibility that it might work, so let's try it.
(45:52):
Well, we can't stop doing this. We've been trying for so long.
We can't stop now. We're committed.
Well, this is a pretty complex procedure. I learned how to do it,
so here I am, ready and able. Let's find a patient I can do it on.
There's quite a demand, especially from an informed public.
Dr. Google says, Edscape says, WebMD says.
(46:17):
So the informed patient or family is going to say, well, what about ECMO, doctor?
I read on Dr. Google that these patients with CDH benefit from ECMO.
And what do we have to do? Interpret.
That's that situation.
This is your child.
(46:38):
And we have to then acknowledge that there's a demand from the public to do
certain things, but there's an equal demand from those of us in practice.
My colleagues all think I should do this. I'm not certain, but I'm feeling the
pressure, peer pressure, and a demand that we should, in fact, do that.
So Hoffman goes on and on, and I certainly would recommend it.
(46:59):
I've recommended it for 20 years now.
And yet the realization is from Aaron Cobb, a philosopher at Auburn,
who himself is a parent of a now-past child with trisomy 18.
All technology limps. I thought, wow, that is a powerful statement.
(47:21):
All technology limps. It's imperfect. perfect.
Nobody's gotten off the face of the earth alive. We all are subject to our finitude, our own mortality.
So no one's found a permanent means to avoid injury or death.
Technology is great, but it's not the BDL.
Five minutes. Thank you. And the other fact here is technology is amoral, not immoral.
(47:46):
It's amoral. It has no moral sense. It's a machine.
So where Where does the morality or the good ethical use of technology come into play?
Who uses it? When and how and for how long? And that means you and I.
The ethics of the use of technology rests in us, not in the machine.
(48:12):
So we have to be careful. We need to know what patient, when,
how, and for how long, and by whom we would be able to measure benefit or harm.
Another term from psychologists that I think impacts our practice and perhaps
our abilities to make decisions with and for families is affective forecasting.
(48:35):
That means, oh, your child has this condition. We're treating this way.
That means six months, six years down the road, this is what's going to happen.
Anybody ever thought, oh, this child's condition, it tears up families,
chronic complex illness.
People get divorced. Families fall apart. people go bankrupt.
Well, some people do, but the majority do not.
(48:58):
In fact, even as tragic as it is, the loss of a child does not break more families
than would otherwise have been broken.
The same is true with the loss of a spouse in the adult world.
People in the hospice industry, if you will, have paid attention to that very fact.
No, it doesn't work that way. It's tragic when it happens, Yes,
(49:20):
but we're in a society where 50% marriages fall apart.
So it's our affective forecasting. That's just one example.
So the child's going home with a trach and a G2.
Your whole life is going to be disrupted. The child's development is going to
(49:40):
be X, Y, Z, what have you. And what happens?
Those of us that do NICU follow up, we see the child six months,
nine months later. it's a different child and it's a different parent.
People have grown together.
If we just focus on what's not right, we don't pay attention to all the things that are.
(50:01):
And we also have what's called immune neglect, and that is the ability for people
to rise to the occasion and buffer themselves from emotional suffering.
And then again, the fact that people adapt. So affective forecasting can get
in the way of good communication and shared decision-making.
I won't spend time on this slide which is about the palliative paternalism.
(50:26):
When there are maladaptive coping risks for any of these reasons,
it may be that counseling, even by the palliative care team,
moves from non-directional to a little bit more directional because the the need is there.
But this takes a lot of time and energy to sift through, and you have experts
(50:48):
here that can help you with that.
I'll close with this last couple of slides. Stephanie Kukora and Rene Boss put
together this wonderful paper.
And you don't have to be a neonatologist looking at this.
You can substitute any other condition that may have situational outcomes considered to be bad or good.
(51:08):
And the clinician may perceive that a high likelihood of non-survival paired
with a high chance of moderate to severe impairment is dismal.
And a very low chance of the desired outcome of intact survival.
So we tend to weight things down with all of these adverse considerations.
And with regard to statistical probabilities, we then communicate this to a family.
(51:35):
But how do families see it? A little bit differently. Parents might view these
outcomes differently if any survival is better than no survival at all.
And if having a surviving yet impaired child is considered the most undesirable
outcome, the fact is most of those children don't survive long and may not even
survive in the neonatal ICU or the pediatric ICU.
(51:58):
And then finally, if dying following intensive care is perceived as more favorable
than possibly missing an opportunity to have had an intact, don't like the word, intact survivor,
the risk of an unfavorable outcome falls to zero. In other words, please try.
Don't withhold this. At least try.
(52:21):
And then we can learn together and I can write my story and feel like I lived
up to my parental responsibilities.
And yes, I'll accept the passing of the child.
So this decision tree, I'll leave with you. We won't walk through it,
but it makes sense. Hello.
OK, there you go. and the slide set you'll have.
(52:44):
So we can look at a case, and we're running out of time, so I'll just leave this with you.
Here's a child that has complications leading to the need for therapeutic hypothermia,
has a flat EEG, fixed and dilated pupils.
Things don't look real good.
How do you make a decision? Anybody familiar with Johnson,
(53:06):
Siegler, and Winslade's four box, which is
here is very common they use clinical ethics
the journal excuse me the the book that this comes from now
in its ninth edition Al Johnson has
passed Mark Siegler's in his 80s in Chicago and William Winslade I think is
still in Galveston but these gentlemen put together this four box approach and
(53:29):
I'm in the process of working on modulating it to become relevant for children
but But medical indications,
parent or guardian preferences, quality of life, and contextual features.
These things help shape our career vision.
Alluded to the zone of parental discretion, and ultimately this mom asks for
(53:49):
an ethics consult because she doesn't want there to be a G-tube and take the
child home in such dire circumstances.
And that then leads us to how do we work through the case? So here's a 10-step method.
It's not terribly difficult.
Identify the ethical question. What is it we're trying to answer?
(54:10):
What facts do I need to gather and understand?
Are best interests clear? How would you balance burdens and benefits?
And that's a dialogue with family.
Who can inform us and who is the decision maker? Are there societal or ethical norms to appeal to?
Are there statements from the academy or other professional bodies that say
(54:32):
this is acceptable or this is recommended?
What strategy should we use going forward?
What issues need attention with the care team? So don't ignore the team. make a recommendation.
It's not make a decision for the clinician, make a recommendation so the clinician
benefits from this process.
And I always leave references, often academy statements, but not always.
(54:57):
And then determine if follow-up is necessary. Ethics consults aren't always
once done and over, especially in pediatrics. There may need to be a continuum.
I thank you for your time. I'm sorry we got rushed towards the end.
If any of you are interested in taking our bioethics certificate course,
which is pediatric bioethics, Glenn's taken it, and it's the only one in the world.
(55:22):
Kansas City, give me a shout out. Thank you.
Thanks so much for listening to that interesting talk.
Don't forget to click on the link in this podcast for ethics credit.
I'm Holly Wayman. Thank you so much for listening.
Our website is pediatricsnowpodcast.com.
(55:46):
I wanted to tell you about our new podcast we've created for your patients and
for the parents out there.
It's called Pediatrics Now for Parents, health news in small bites in about 10 minutes or less.
But we hope it's one less thing you have to cover in the exam room.
That's Pediatrics Now for Parents, anywhere where you get your podcasts.
(56:10):
The website is pediatricsnowforparents.com.
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