Yale Pediatric Ethics Program talk: Will the Dobbs Decision Inevitably Impact on Neonatal Care? with Alan R. Fleischman, MD

Transcript

• 00:10Well, good evening, and welcome,
• 00:13to the the good crowd
• 00:14we have in our room
• 00:15and to the many folks
• 00:15we have, on Zoom as
• 00:17well. It's a special night
• 00:19for the Yale pediatric ethics
• 00:21program.
• 00:22And,
• 00:23if you happen to stumble
• 00:24into this, meeting tonight, you
• 00:25stumbled into the right place.
• 00:27My name is Mark Merciero.
• 00:29I know most of you,
• 00:30I think.
• 00:30I'm the director of the
• 00:31Yale Pediatric Ethics Program. And
• 00:33sometimes you're at the same
• 00:34venue and you hear from
• 00:35the the, program for biomedical
• 00:37ethics, and,
• 00:39you'll notice that I wear
• 00:39a different I don't actually,
• 00:40it's probably the same tie
• 00:41I wear for both, so
• 00:42never mind that.
• 00:43But we, we share the
• 00:45same format, these two programs.
• 00:48And, we've some nights, we
• 00:50focus specifically on pediatric issues,
• 00:52and this is one of
• 00:52those nights.
• 00:55We have,
• 00:57over some time, heard from
• 00:58various people. And some
• 01:00people who've come and and
• 01:01spoken to us have been
• 01:02people who I have,
• 01:04been worked with worked with
• 01:05over the course of the
• 01:05years, and some people
• 01:07are, are thankful for mentorship.
• 01:09And that's all very nice,
• 01:10but it's it's my turn
• 01:11to turn that around,
• 01:12and introduce to you, my
• 01:14mentor,
• 01:15Alan Fleischman.
• 01:17Alan,
• 01:18I'll read a little bit.
• 01:19I've just there's too much
• 01:20to say about what he's
• 01:21accomplished in his career so
• 01:22far.
• 01:23But I,
• 01:25I will let you know
• 01:26that among his great accomplishments,
• 01:27he actually tricked me into
• 01:28becoming a bioethicist.
• 01:29So,
• 01:31it was I knew Alan
• 01:32through the world of neonatology.
• 01:33Alan was chief of neonatology
• 01:34for many years down at
• 01:35Einstein and Montefiore,
• 01:37and as well as a
• 01:38leader in in pediatric ethics.
• 01:40And I had,
• 01:42I had reached out to
• 01:43him earlier in my career,
• 01:44much earlier in my career
• 01:45and said, you know, I
• 01:45was interested in bioethics, and
• 01:47I went down to visit
• 01:48him. He was working at
• 01:48the New York Academy of
• 01:49Medicine time. He had a
• 01:50leader position there leadership position
• 01:52there. And I went on
• 01:53that. And, again, we had
• 01:54Orzo.
• 01:55I mean, it's for the
• 01:56for the details you remember
• 01:57because I never heard of
• 01:58Orzo until I that's what
• 01:59this is. Oh, it was
• 01:59good. He he had a
• 02:01beautiful dinner brought in, a
• 02:02lunch brought in rather. We
• 02:03sat in his office for
• 02:04must have been two hours
• 02:06and talked about various things
• 02:07and ways to approach a
• 02:08career in bioethics.
• 02:09He was a huge, influence
• 02:11on me and has been,
• 02:12throughout my career, has been
• 02:13a role model,
• 02:15someone who could, split their
• 02:16time between leadership in neonatology
• 02:18as well as in pediatric
• 02:19bioethics. So as you're about
• 02:20to hear, his accomplishments in
• 02:22both of these arenas are
• 02:23are really
• 02:24quite extraordinary. So I was
• 02:26delighted when Alan agreed to
• 02:28come this year and speak
• 02:29to us. Now I have
• 02:30to tell you that,
• 02:32I was just we were
• 02:33just talking about it. It
• 02:34was quite a while ago
• 02:35that I that I I
• 02:35make the schedule in the
• 02:36spring, and I said, well,
• 02:37I'd like you to come
• 02:38speak this year. And he
• 02:39had various titles that he'd
• 02:40offered me, and I chose
• 02:41this one. And we had
• 02:42various dates, and it worked
• 02:43out to this one. But
• 02:44this particular title on this
• 02:45particular date may seem somewhat,
• 02:47prescient. We'll see.
• 02:50But but it it should
• 02:51be a fascinating conversation. So
• 02:53let me just tell you
• 02:53a few things about my
• 02:54friend, Alan Fleischman. He's a
• 02:56professor of pediatrics and a
• 02:57professor of epidemiology and public
• 02:59health at the Albert Einstein,
• 03:02College of Medicine and the
• 03:03Children's Hospital
• 03:04at Montefiore.
• 03:05And he joined the faculty
• 03:06at Einstein,
• 03:07in nineteen seventy five, and
• 03:09he was, for a long
• 03:10time the chief of neonatology
• 03:12there
• 03:13as well as he is
• 03:14now a senior associate. He's,
• 03:15in the bioethics program, another
• 03:17bioethics center, and has long
• 03:19been involved with bioethics work
• 03:20there, but as well as
• 03:22nationally. In addition to his
• 03:23work there, he has had
• 03:24a leadership position at the
• 03:26March of Dimes Foundation.
• 03:27He's had a leadership position
• 03:28at the New York Academy
• 03:29of Medicine as, I think,
• 03:31the the chief medical officer,
• 03:33the medical lead there, at
• 03:35the at the March of
• 03:36Dimes. So many different things
• 03:37here. Alan was the ethics
• 03:39adviser to the child children's
• 03:41study at the NIH, something
• 03:42that the pediatricians in the
• 03:44room are likely familiar with.
• 03:46He's done so much work
• 03:47in terms of advising on
• 03:48the governmental level. He's been
• 03:50involved with the FDA. He's
• 03:51been involved with the NIH.
• 03:53He has been,
• 03:54the guru in pediatric bioethics
• 03:57for a very long time.
• 03:59And there are many people,
• 04:00you know, who
• 04:02edit textbooks in this or
• 04:04that, which Alan did earlier
• 04:05in his career. He edited
• 04:06a wonderful textbook in pediatric
• 04:08ethics. But then not too
• 04:09long ago, a few years
• 04:10back,
• 04:11he just wrote one. Didn't,
• 04:12like, you know, collect twenty
• 04:14chapters from twenty of his
• 04:15buddies. He actually wrote the
• 04:16whole book, and it's an
• 04:18excellent book. I recommend it
• 04:19highly, a book on pediatric
• 04:20ethics by doctor Alan Fleishman.
• 04:23There's so many more things
• 04:24I could say. I'm truly
• 04:25grateful, Alan, that you took
• 04:26the time to come with
• 04:26us tonight. Let me introduce
• 04:28to you, please, doctor Alan
• 04:29Fleishman.
• 04:37It's a pleasure to be
• 04:38here and,
• 04:41lovely introduction.
• 04:44My mother would have loved
• 04:45it, and my father would
• 04:46have believed it.
• 04:49But I really do appreciate,
• 04:51Mark, the work that you're
• 04:52still doing in pediatric bioethics,
• 04:55and his leadership nationally and
• 04:57internationally
• 04:58is,
• 04:59astounding.
• 05:01So I wanna talk about
• 05:02the Dobbs
• 05:03decision.
• 05:06I hope.
• 05:10So we're gonna move this
• 05:12this way? No?
• 05:14This way?
• 05:19Okay. Got it.
• 05:21Thank you.
• 05:25Will the Dobbs decision
• 05:27inevitably
• 05:29impact
• 05:30not on women's health,
• 05:33but on the health
• 05:35of neonates.
• 05:36We know it's already impacted
• 05:38on women's health.
• 05:40But what about neonates?
• 05:42How?
• 05:44Will it?
• 05:46And what ought the pediatricians
• 05:47and neonatologists
• 05:49do
• 05:50when legislators
• 05:52or commentators
• 05:55come to stop us?
• 06:00I think this is a
• 06:01very important issue.
• 06:03And as Mark said,
• 06:05I didn't know this was
• 06:07the day after election day
• 06:08when we
• 06:09discussed this six months ago.
• 06:12But it may be more
• 06:13important today,
• 06:16than any other day in
• 06:17the last six months.
• 06:20So I'm still not
• 06:22going anywhere here.
• 06:25Is it this?
• 06:28Uh-huh.
• 06:33You gotta plug me in.
• 06:38Okay. I have no disclosures
• 06:40of financial conflicts.
• 06:42I appreciate Mark's,
• 06:45advertising my book, but that's
• 06:49not gonna get me very
• 06:50much.
• 06:51I have two goals for
• 06:52tonight.
• 06:55My first goal is to
• 06:57explain why it is inevitable
• 06:59based on fifty years of
• 07:00neonatal history
• 07:03that I've lived,
• 07:05been a part of,
• 07:06and will tell you about.
• 07:11I will,
• 07:13I think, convince you that
• 07:14it will impact negatively on
• 07:16neonatal care
• 07:19and primarily
• 07:21on parental decision making.
• 07:25And I'd like to lay
• 07:26the framework
• 07:28for the response from neonatologists
• 07:30to justify
• 07:31our current approach,
• 07:34which we call shared decision
• 07:36making,
• 07:38and see if we can,
• 07:41convince you
• 07:42that we have a case
• 07:43to make
• 07:44for the babies and their
• 07:45families.
• 07:48Now the history of neonatal
• 07:49ethics all started at Yale.
• 07:52Mark knows that.
• 07:55Lots of the Yale
• 07:56faculty know that.
• 07:58Two
• 08:00magnificent
• 08:00attendings
• 08:02in the early seventies,
• 08:03Raymond Duff
• 08:05and AG Campbell
• 08:07wrote an article published in
• 08:09the New England Journal of
• 08:10Medicine.
• 08:11Important journal.
• 08:15Mhmm.
• 08:17It was in October of
• 08:19seventy three.
• 08:22Let me just ask a
• 08:23question so I can understand
• 08:25who's in the audience
• 08:27so I can figure out
• 08:28what jargon I should and
• 08:29shouldn't use.
• 08:31How many physicians are in
• 08:32the audience?
• 08:35Nurses or other health care
• 08:36professionals?
• 08:39How many real people?
• 08:42Okay. Here you go. Alright.
• 08:44Okay.
• 08:47So
• 08:52Duff and Campbell wrote about
• 08:54two hundred and ninety nine
• 08:56deaths
• 08:57in what was called the
• 08:58special care nursery.
• 09:00We didn't call it neonatal
• 09:01intensive care units.
• 09:02We call them special care
• 09:04units.
• 09:05And some of that language,
• 09:07I think, is lost and
• 09:09perhaps should come back.
• 09:11So sometimes we give very
• 09:12special care,
• 09:14and it's not very intensive
• 09:16treatment,
• 09:17but it's intensive caring
• 09:19in those special care units.
• 09:22Two nine two hundred ninety
• 09:23nine deaths, forty three were
• 09:25related to the withdrawal
• 09:27of treatment
• 09:28and allowing babies to die.
• 09:32Now writing about that today
• 09:33from Yale or anywhere else
• 09:35would not be very unusual.
• 09:38But in nineteen seventy three,
• 09:40it was the very first
• 09:41time
• 09:43that the public, through this
• 09:44published article,
• 09:46learned
• 09:47that doctors were actually allowing
• 09:49babies to die
• 09:51in neonatal units.
• 09:53It was brand new.
• 09:56And what Duff and Campbell
• 09:58said was,
• 10:00this is a group decision.
• 10:02It's not just the doctor's
• 10:04decision.
• 10:10And they said and I
• 10:11I do wanna quote because
• 10:12for any of you who
• 10:13are in the field of
• 10:14neonatal medicine,
• 10:15read this article again. If
• 10:17you haven't ever read it,
• 10:18read it for the first
• 10:18time.
• 10:19The language used
• 10:21is still
• 10:22current,
• 10:23accurate,
• 10:25and excellent.
• 10:27And it's amazing
• 10:29that so many years ago,
• 10:31these doctors were using language
• 10:33that I teach in my
• 10:35pediatric ethics course
• 10:37to show
• 10:38the physicians,
• 10:40nurses, and others
• 10:41who take that course
• 10:44that
• 10:45we're not really very new.
• 10:47We've had smart, thoughtful
• 10:50commentators
• 10:51for a very long time.
• 10:54They wrote, prognosis for a
• 10:56meaningful life,
• 10:59not quality of life, but
• 11:00meaningful life, pretty pretty close,
• 11:04was extremely poor or hopeless
• 11:07for those infants who were
• 11:09allowed to die.
• 11:11And he also wrote the
• 11:12awesome finality of these decisions
• 11:16made the choice agonizing.
• 11:20It's important for us in
• 11:21neonatology
• 11:22to remember
• 11:23that these choices
• 11:25are agonizing.
• 11:27They're not easy choices.
• 11:30Awesome finality of these decisions
• 11:33for families
• 11:35and for health professionals.
• 11:38Nevertheless, the issue
• 11:40has to be faced
• 11:41for not to decide
• 11:44is an arbitrary
• 11:45and potentially
• 11:47devastating decisions
• 11:49of default.
• 11:51So here they were
• 11:53telling the world.
• 11:56Now the neonatal
• 11:58group at that time
• 12:00and I gotta tell you,
• 12:01I'm old enough to have
• 12:02been there already
• 12:03in seventy three.
• 12:05But the neonatal group at
• 12:07that time were amazed
• 12:10that the New England Journal
• 12:11of Medicine had this article.
• 12:13We applauded it.
• 12:15Most of us were concerned
• 12:17that there was going to
• 12:18be negative impact, that people
• 12:20were gonna be upset that
• 12:21doctors are letting babies die.
• 12:23And in fact, Ray Duff
• 12:24took a lot of heat.
• 12:27He took criticism from doctors.
• 12:29He took criticisms from newspapers.
• 12:31He took criticisms for the
• 12:32rest of his career
• 12:34as he defended
• 12:36what his actions were.
• 12:39Now there was something else
• 12:40going on in nineteen seventy
• 12:42three.
• 12:44The Supreme Court
• 12:46was asked to look at
• 12:48a Texas law
• 12:50that prohibited
• 12:52abortion except to preserve the
• 12:53life of pregnant persons.
• 12:58The decision was called Roe
• 13:00versus Wade.
• 13:02And in that decision,
• 13:06basically,
• 13:07the court said no state
• 13:09shall make or enforce any
• 13:10law which shall abridge the
• 13:12privileges
• 13:13or immunities of citizens of
• 13:15the United States,
• 13:17nor shall any state deprive
• 13:19any person of life, liberty,
• 13:21or property without due process
• 13:22of law
• 13:24based on the fourteenth amendment
• 13:25of the US constitution.
• 13:28Therefore,
• 13:29the Texas law
• 13:30would be struck down.
• 13:34The court held
• 13:36that if a fetus was
• 13:38viable,
• 13:39and by viable, they meant
• 13:42there was a point when
• 13:43a fetus can
• 13:45survive outside the womb
• 13:49with medical support if needed,
• 13:53then
• 13:55the pregnant person could not
• 13:57decide
• 13:58to terminate that pregnancy.
• 14:00This was a compromised decision
• 14:03by the Supreme Court. This
• 14:04was a balancing
• 14:07of the privacy rights of
• 14:08the woman
• 14:10and the evolving moral status
• 14:14of the fetus.
• 14:16Is there a neonatal fellow
• 14:18here?
• 14:20No. That's okay. Alright.
• 14:22I I usually start with
• 14:24medical students, but I wanted
• 14:25to kick it up a
• 14:25few notches. So tell me.
• 14:27Wait. Should we set up
• 14:28up here? No. No. No.
• 14:29No. It's fine. Just one
• 14:30question.
• 14:31What's the mortality rate
• 14:34for a twenty eight week
• 14:35thousand gram, which is about,
• 14:37like, two pounds four ounces
• 14:38for those who don't talk
• 14:40grams? What's the mortality rate
• 14:41at Yale?
• 14:43Very
• 14:44low. I don't have a
• 14:45number. I'll just talk again.
• 14:46Who knows the number? Yeah.
• 14:49Okay. Well, in the Bronx
• 14:51Five to ten percent. Five
• 14:52to ten percent? Yeah. In
• 14:54the Bronx, the survival rate's
• 14:56ninety five percent.
• 14:58Thousand
• 14:59grams, twenty eight weeks.
• 15:02Thousand grams is two pounds,
• 15:04four ounces thereabouts.
• 15:07But
• 15:08twenty eight weeks in nineteen
• 15:10seventy three
• 15:12was the threshold of viability
• 15:14for the Supreme Court.
• 15:16The actual survival rate was
• 15:18less than ten percent
• 15:20in seventy three.
• 15:21Those of us who were
• 15:23kinda tracking that.
• 15:24And it was unusual
• 15:26that a premature baby would
• 15:28survive who was a thousand
• 15:29grams, but it might be
• 15:31one of those babies who
• 15:32hadn't grown that well and
• 15:33was a little more mature.
• 15:35We didn't have the sexy
• 15:37respirators.
• 15:38We didn't have the exciting
• 15:39commitment. We didn't have the
• 15:41drugs. We didn't have the
• 15:42commitment
• 15:43either.
• 15:45We didn't have the commitment
• 15:47either.
• 15:49I gotta tell you one
• 15:50story.
• 15:51I was a sub intern
• 15:53in nineteen sixty
• 15:56eight.
• 15:58A sub intern.
• 16:00That means that I was
• 16:01still a medical student,
• 16:03For medical students.
• 16:05Okay?
• 16:07And they sent me to
• 16:08the delivery room in the
• 16:09middle of the night because
• 16:10there was supposed to be
• 16:12a little preemie born.
• 16:14They sent me alone.
• 16:19I went.
• 16:21And out popped
• 16:22this little baby
• 16:25who ended up being about
• 16:26a thousand grams,
• 16:28nineteen sixty eight.
• 16:30And it kinda moved around
• 16:32a little.
• 16:34So I had been taught
• 16:36how to put a tube
• 16:37into that airway.
• 16:39So I did,
• 16:40and I took a little
• 16:41bag and gently ventilated that
• 16:43baby.
• 16:44Am I doing okay so
• 16:46far?
• 16:47Okay.
• 16:48And wow,
• 16:50she started moving around.
• 16:53She didn't breathe much, but
• 16:55she looked like a baby.
• 16:58So I called over to
• 16:59the nursery and I said,
• 17:00I'm bringing over a baby
• 17:01for admission.
• 17:03I rolled the baby over
• 17:04there in a nice little
• 17:06warmer isolate thing,
• 17:09incubator.
• 17:12And when I got there,
• 17:13the head nurse weighed the
• 17:14baby
• 17:15and said, oh, the baby's
• 17:16about two pounds.
• 17:20We don't
• 17:21put babies
• 17:23two pounds on respirators.
• 17:27So just take the tube
• 17:28out.
• 17:30I said, what?
• 17:32I mean, like, she'll die.
• 17:34They said, yes.
• 17:36But it's hurtful to prolong
• 17:38suffering
• 17:38if a baby is going
• 17:40to die anyway.
• 17:41And no baby at a
• 17:42thousand grams has ever survived
• 17:44here.
• 17:49I was just a medical
• 17:51student,
• 17:52but I wouldn't give up
• 17:53the bed.
• 17:55I didn't know what to
• 17:56do.
• 17:59So I kept ventilating that
• 18:00baby.
• 18:02Now
• 18:04do attending sleep in the
• 18:05hospital?
• 18:07Do fellows sleep in the
• 18:09hospital? No. They work. Right.
• 18:12There were no fellows, attendings.
• 18:15There might have been a
• 18:15senior resident somewhere
• 18:18on pediatrics probably, not in
• 18:20the nursery. You know, it
• 18:21was really
• 18:22I didn't know what to
• 18:23do.
• 18:24They called the attending, who
• 18:26happened to be the chief
• 18:27of service,
• 18:28and he said, I'll be
• 18:29in at seven.
• 18:30It was three in the
• 18:31morning.
• 18:33The nurses would not care
• 18:34for that baby,
• 18:36so I
• 18:37sat there
• 18:38and pumped that bag gently.
• 18:42At seven o'clock in the
• 18:43morning, the
• 18:45chief came
• 18:47in. He said, Alan, I
• 18:48wanna get you a cup
• 18:49of coffee.
• 18:51Come into my office. And
• 18:52he handed the bag to
• 18:53the nurse.
• 18:55And I went with him
• 18:56to his office, and he
• 18:57explained to me
• 18:58that you're only prolonging the
• 19:00dying process and it's not
• 19:01right. It's unethical.
• 19:07And I said, well,
• 19:09the kid really looks pretty
• 19:11good.
• 19:13And the baby died,
• 19:15and I decided I needed
• 19:16to study ethics.
• 19:19I decided
• 19:20that if that was unethical,
• 19:23then I was really
• 19:24concerned
• 19:26about
• 19:28how do we describe
• 19:30ethicality.
• 19:33So we had Roe versus
• 19:34Wade in seventy three,
• 19:36and let me just go
• 19:37on a moment to talk
• 19:39about the moral and legal
• 19:40status of fetuses
• 19:42So we get some
• 19:44things on the table.
• 19:47Some, very few people,
• 19:50feel
• 19:51a fetus has no moral
• 19:52status whatsoever.
• 19:55Most people
• 19:57feel a fetus has evolving
• 19:59moral status changing with gestational
• 20:01age,
• 20:03and some people and some
• 20:05religious
• 20:07believers
• 20:08feel a fetus has full
• 20:09moral status beginning at conception.
• 20:15So let's unpack that a
• 20:16little.
• 20:18A fetus
• 20:19who has no moral status
• 20:22would merely
• 20:26be physically indistinct
• 20:28from any other part of
• 20:29the pregnant person.
• 20:31And the pregnant person's autonomous
• 20:33decisions
• 20:34about
• 20:35parts of her body
• 20:37would, in fact, prevail,
• 20:40and would determine whether the
• 20:42pregnancy continues at any point
• 20:44if the fetus has no
• 20:46moral standing.
• 20:48But what if a fetus
• 20:49has evolving moral status, which
• 20:51changes with gestational age?
• 20:54That's what the Supreme Court
• 20:56had argued.
• 20:59The unique potentiality of a
• 21:01fetus
• 21:02because it is a unique
• 21:04genetically determined
• 21:05entity
• 21:07who has the potential
• 21:09to become a child.
• 21:12The unique potentiality,
• 21:15some would argue most,
• 21:17requires recognition of some level
• 21:19of moral obligation
• 21:20as this fetus develops,
• 21:23which would then argue it's
• 21:24increasingly difficult to justify termination
• 21:27or pregnancy as the moral
• 21:28status of the fetus increases.
• 21:33And termination
• 21:35might be justified before,
• 21:37but unlikely justified
• 21:40after viability.
• 21:42That was the whole Roe
• 21:44versus Wade Supreme Court argument.
• 21:46And then a few people,
• 21:48not a few, but some
• 21:50believe
• 21:51that the moral status of
• 21:52the fetus begins at conception
• 21:54when the egg and sperm
• 21:56come together.
• 21:58And that termination is never
• 21:59justified.
• 22:01Or in some people's beliefs,
• 22:02it might be justified
• 22:04to save the life of
• 22:06the pregnant person.
• 22:08So these three aspects of
• 22:10the potential for moral status
• 22:11of the fetus,
• 22:14is rather important
• 22:16because depending upon which of
• 22:18those you buy into or
• 22:20believe in would determine
• 22:23what you believe
• 22:24to be
• 22:25the right way to deal
• 22:27with pregnant person's decision making
• 22:29about termination.
• 22:31Now let's focus on the
• 22:33child for a moment
• 22:37because
• 22:38most fetuses will become a
• 22:40child at some point.
• 22:44Almost everyone believes that a
• 22:45child is independent moral status
• 22:47worthy of respect
• 22:49after it is
• 22:51born.
• 22:52Clinicians and parents have moral
• 22:54and legal obligations to protect
• 22:55the interests of children. In
• 22:57bioethics, we call that
• 22:59beneficence
• 22:59based obligations
• 23:02to maximize the interests
• 23:04of those that we care
• 23:06for or love.
• 23:08Parents are surrogate decision makers
• 23:10for their children.
• 23:12Surrogate decision makers. They make
• 23:14decisions
• 23:15for someone else.
• 23:17And the society our society
• 23:19gives great deference to parents
• 23:21as surrogate decision makers. We
• 23:23hold them responsible for not
• 23:25hurting
• 23:26their children,
• 23:28but they can go ahead
• 23:30and
• 23:32pray to any god they
• 23:33wish,
• 23:35teach
• 23:36the child about religion or
• 23:37not,
• 23:39but we don't let them
• 23:40murder their children.
• 23:42We don't let them kill
• 23:43their children.
• 23:45We're obligated to help them
• 23:46feed their children,
• 23:47but in fact, we allow
• 23:48them to feed their children
• 23:50in a whole bunch of
• 23:50different ways.
• 23:53We ask them to educate
• 23:54their children, and we obligate
• 23:56that they educate their children,
• 23:57but they have many choices
• 23:59including homeschooling.
• 24:01So parents have a great
• 24:03deference
• 24:04in our society.
• 24:06This deference is consistent
• 24:08with the concept in America
• 24:10of respect
• 24:12for family
• 24:13and family integrity
• 24:15and the desire to have
• 24:16a designated person with the
• 24:18authority to make such decisions.
• 24:20If you're a doctor, you
• 24:21gotta ask somebody permission.
• 24:24It would be good to
• 24:25know who that ought to
• 24:26be,
• 24:27or unless you arrogate to
• 24:29yourself all the decisions for
• 24:30those patients who come to
• 24:32you.
• 24:33But parents are not autonomous
• 24:35decision makers for their children.
• 24:40You are an autonomous decision
• 24:42maker for yourself.
• 24:44If you have capacity,
• 24:46you have the authority
• 24:48to refuse any treatment
• 24:51that is offered to you
• 24:52by any physician
• 24:54or mental health professional
• 24:56or physical therapist or nurse.
• 24:59And I would assume if
• 25:00you're here tonight,
• 25:02you probably have that autonomous
• 25:03choice.
• 25:06And in fact, as a
• 25:08physician, I'm obligated
• 25:10to think that when you
• 25:11walk into my office until
• 25:12you give me some reason
• 25:14not to.
• 25:20Parents are not autonomous decision
• 25:22makers.
• 25:23If a parent makes a
• 25:25child
• 25:26places a child at imminent
• 25:28risk for a serious and
• 25:29irreversible harm,
• 25:32then we as physicians and
• 25:34we as members of society
• 25:36need to reach out and
• 25:36protect that child
• 25:40and not allow them
• 25:42to be autonomous decision makers
• 25:44for that child.
• 25:46You
• 25:47can refuse
• 25:49a needed, efficacious,
• 25:51terrific treatment.
• 25:52You don't have to take
• 25:54antibiotics. You don't have to
• 25:55take blood. As an adult,
• 25:57you have the authority
• 25:59to refuse
• 26:00as long as you have
• 26:01the capacity.
• 26:05So nineteen eighty two, we're
• 26:07moving along in the history
• 26:08now a little bit.
• 26:12There's a little baby born
• 26:17in Bloomington, Indiana.
• 26:19Small town.
• 26:21Nineteen eighty two.
• 26:23It's April. Baby has Down
• 26:25syndrome.
• 26:27Well known genetic abnormality.
• 26:30Three chromosomes in the twenty
• 26:32one area,
• 26:34and has a blockage in
• 26:35the esophagus,
• 26:36esophageal atresia,
• 26:38and a fistula, a tube
• 26:40from the esophagus to the
• 26:42trachea.
• 26:44So that means anything you
• 26:45put in the esophagus could
• 26:46slip right into the lungs.
• 26:51This congenital abnormality blocks food
• 26:53from getting to the stomach
• 26:55and also
• 26:56makes the patient very susceptible
• 26:59to lung real serious problems.
• 27:03Even in nineteen eighty two,
• 27:04surgical correction of these abnormalities
• 27:06was routinely performed
• 27:08and generally successful.
• 27:12Doctors recommended not to perform
• 27:14the surgery and to allow
• 27:15the child to die
• 27:17because of the child's future
• 27:19of Down syndrome,
• 27:22mental retardation, cognitive impairment.
• 27:26There was no heart defect
• 27:27in this child, which is
• 27:28often the case with Down
• 27:29syndrome children,
• 27:31but there was this major
• 27:33chest problem.
• 27:35Parents agreed not to operate
• 27:37state stating it was not
• 27:38in the best interest of
• 27:39the child to survive,
• 27:42and a minimally acceptable quality
• 27:44of life was never present
• 27:46for a child suffering from
• 27:47such a condition,
• 27:49such as Down syndrome.
• 27:51Someone inside the hospital petitioned
• 27:53the court
• 27:54to intervene.
• 27:56The judge heard the case
• 27:58and confirmed the parents' right
• 27:59to refuse the surgery.
• 28:01Remember, the doctors had suggested
• 28:04no surgery,
• 28:05and they allowed the child
• 28:06to die.
• 28:07Child died in five or
• 28:08six days.
• 28:10It's wasn't a difficult death.
• 28:13Child didn't suffer,
• 28:15but it died.
• 28:16He died.
• 28:22There were two people who
• 28:23heard about
• 28:25this case.
• 28:27One was president
• 28:28Reagan.
• 28:31Ronald Reagan had become president
• 28:32in nineteen eighty. He had
• 28:34run
• 28:35on a right to life,
• 28:37I will overturn
• 28:38Roe v Wade platform.
• 28:44And he asked
• 28:46C. Everett Koop
• 28:48to become his surgeon general.
• 28:52You ever hear of c
• 28:53Everett Koop? Yeah. Nope?
• 28:56What did c Everett Koop
• 28:57do for a living?
• 28:59Pediatric surgeon. He was a
• 29:00pediatric surgeon at the Children's
• 29:02Hospital of Philadelphia.
• 29:04See, Everett Koop was a
• 29:05great pediatric surgeon.
• 29:07He created
• 29:09most of the procedures
• 29:10that pediatric surgeons then
• 29:13learned how to do.
• 29:14He was among
• 29:16about four
• 29:18men of that stature
• 29:19in the United States at
• 29:21that time. You were all
• 29:21men, I'm sorry to say,
• 29:23but they were.
• 29:25And
• 29:26Foucault
• 29:27was well known
• 29:29as a very religious man.
• 29:33In fact,
• 29:35any residents in the here?
• 29:38Resident pediatric residents? No? Okay.
• 29:41In fact, if you were
• 29:42a resident
• 29:43in surgery,
• 29:45you had to pray at
• 29:46six thirty in the morning
• 29:48with doctor Koop in the
• 29:50operating room,
• 29:52or you didn't get to
• 29:52operate.
• 29:55Oh, boy.
• 29:59But he was a great
• 30:00surgeon,
• 30:01and he taught well,
• 30:04and he believed in the
• 30:05right to life.
• 30:06He was opposed to abortion.
• 30:08And by the way, he
• 30:10had operated on a large
• 30:11number of Down syndrome children
• 30:13with congenital abnormalities.
• 30:15Now he would admit
• 30:17that
• 30:18he actually started
• 30:21with them
• 30:23before he
• 30:24would operate on so called
• 30:27normal children.
• 30:30But
• 30:31because he had done that
• 30:33and was successful,
• 30:35he felt
• 30:36that those children
• 30:37deserved his attention
• 30:39and got his attention.
• 30:43So they decided
• 30:45that they would be concerned
• 30:47about, in nineteen eighty three,
• 30:48what we called the fourth
• 30:50trimester.
• 30:53Now for the physicians, everybody
• 30:54knows there are three trimesters
• 30:55in pregnancy.
• 30:57The fourth trimester was neonatal
• 30:59care.
• 31:00And so they couldn't win
• 31:02the Roe v Wade problem
• 31:04because Congress would not
• 31:06pick that hot potato up
• 31:08for president Reagan.
• 31:10It was a very hot
• 31:11potato,
• 31:13and it remained a hot
• 31:14potato until twenty twenty two.
• 31:18So Congress never addressed it.
• 31:21So they were gonna address
• 31:22this problem.
• 31:24And what did they do?
• 31:27They put up this sign
• 31:31based on
• 31:33an executive order
• 31:34from the Department of Health
• 31:36and Human Services through the
• 31:37president.
• 31:39And this sign basically said
• 31:42that we've got a law.
• 31:44We've got a law,
• 31:46the section five zero four
• 31:48of the Rehabilitation
• 31:49Act of nineteen seventy three.
• 31:53And that law basically says
• 31:54you can't discriminate
• 31:56against those who are disabled.
• 32:00It was an important law
• 32:02in nineteen seventy three.
• 32:04So they said failure to
• 32:06feed or care for infants
• 32:07may also violate the criminal
• 32:09and civil laws of your
• 32:10state,
• 32:11but now we're telling you
• 32:13it's a federal offense.
• 32:16And they put up these
• 32:17signs in every delivery room
• 32:18and nursery in the United
• 32:20States
• 32:21with an eight hundred hotline
• 32:22number
• 32:26that you were supposed to
• 32:27call if you observed
• 32:29any child
• 32:32being permitted to die
• 32:34in a nursery
• 32:36or a delivery room.
• 32:37Now there were a couple
• 32:38thousand phone calls.
• 32:41Almost all of them were
• 32:42from residents and nurses in
• 32:43the middle of the night
• 32:44who were reading these signs
• 32:46and wanted to know if
• 32:47anybody was home at the
• 32:48eight hundred number.
• 32:50But forty seven of them
• 32:54got federal agents to come
• 32:55out.
• 32:57None of them were founded.
• 32:59None of them caused any
• 33:01trouble.
• 33:01One of them was in
• 33:03a middle of New York
• 33:04State,
• 33:05well known,
• 33:07neonatal unit
• 33:08in which there was a
• 33:10sign
• 33:11on the isolette on the
• 33:13incubator that said, do not
• 33:15feed.
• 33:19Alright. Yep. It was there.
• 33:21There are pictures of that
• 33:22sign.
• 33:24So when the FBI and
• 33:26the agents came,
• 33:28of course, they came at
• 33:29three in the morning.
• 33:31And do I have a
• 33:33nurse?
• 33:35Three in the morning
• 33:37into a neonatal intensive care
• 33:38unit.
• 33:39The FBI agents,
• 33:41the first thing they do
• 33:42is confiscate all the records.
• 33:46Oh my god.
• 33:48These aren't electronic records. We're
• 33:49talking about nineteen eighty three.
• 33:52Okay? This is paper.
• 33:54The nurses went crazy.
• 33:57Appropriately.
• 33:58They gotta take care of
• 33:59the babies.
• 34:01Okay. So they come in.
• 34:03They take the records.
• 34:05And, of course, they called
• 34:06everybody under the sun. And
• 34:07it took till about eight
• 34:08o'clock in the morning
• 34:10until the doctors, the lawyers,
• 34:12everybody got together.
• 34:14And this poor kid was
• 34:16about to go home, but
• 34:17he needed a hernia or
• 34:18fee,
• 34:19a little hernia repair before
• 34:21he got to get out
• 34:22of there.
• 34:23So they said don't feed
• 34:25him.
• 34:27They were putting in an
• 34:28intravenous
• 34:29so he gets some fluids,
• 34:33and that resolved that case.
• 34:34But there were forty seven
• 34:36of those kinds of cases
• 34:37that really came to no
• 34:41real concern.
• 34:43I happened to be on
• 34:44the bioethics committee of the
• 34:46American Academy of Pediatrics at
• 34:47that time.
• 34:48Maybe for my sins, but
• 34:50mostly it was for my
• 34:51having written about neonatal ethics.
• 34:53So that's what happens to
• 34:54you. You get on the
• 34:55committee, Mark, and then you
• 34:57become chair, Mark,
• 35:00and then you get off.
• 35:02Right. But it's a six
• 35:04year commitment.
• 35:05Anyway, I happened to be
• 35:06on that committee,
• 35:09and
• 35:11we were terribly upset about
• 35:13those signs.
• 35:14The The American Academy of
• 35:15Pediatrics now had a problem.
• 35:17The problem was
• 35:19that
• 35:20we supported disabled kids. We
• 35:22tried to help optimize them.
• 35:24We wanted to get as
• 35:26many resources
• 35:27for kids
• 35:29who had problems.
• 35:30And some of our preemies
• 35:31did and some of the
• 35:32kids with congenital abnormalities did,
• 35:34and we wanted
• 35:36the society and the government
• 35:38to help support all those
• 35:39kids.
• 35:41On the other hand,
• 35:42we also represented
• 35:44the families
• 35:46who were making hard decisions
• 35:47along with those neonatologists.
• 35:49So how do you go
• 35:50forward
• 35:51and support
• 35:53children with abnormalities,
• 35:55but at the same time
• 35:56understand that there are some
• 35:58children who are suffering,
• 36:00some children whose futures
• 36:01are really grim,
• 36:03and some families
• 36:05who would like us to
• 36:06withdraw treatment
• 36:07and focus on comfort.
• 36:11So we had to figure
• 36:13out
• 36:14how to negotiate all that,
• 36:17and we did.
• 36:18And we got the signs
• 36:19taken down,
• 36:21but we settled for the
• 36:22child abuse and treat treatment
• 36:24act amendments of nineteen eighty
• 36:25four.
• 36:27Now, what did they say?
• 36:29This was a new act.
• 36:31It defined
• 36:33medical neglect
• 36:35as not
• 36:36making decisions that were in
• 36:38the interest
• 36:39of children.
• 36:41Well,
• 36:42we can live with that.
• 36:43And it says that states
• 36:45had to add medical neglect
• 36:47to their child abuse
• 36:48program,
• 36:50which not every state had
• 36:51done.
• 36:52This was the way that
• 36:53you could override parental refusals
• 36:56if there was going to
• 36:57be imminent harm and danger
• 36:59to kids and doctors thought
• 37:01that there was an efficacious
• 37:02appropriate treatment.
• 37:06So we added medical neglect,
• 37:09and the rule specified three
• 37:11instances in which the withholding
• 37:12of medical treatment
• 37:14was justified
• 37:16to allow parents
• 37:18to decide
• 37:19if infants might die.
• 37:22One was the infant is
• 37:23chronically or irreversibly comatose.
• 37:26Two was the provision of
• 37:27such treatment would merely prolong
• 37:29dying, not be effective in
• 37:30ameliorating or correcting all the
• 37:32infant's life threatening conditions, or
• 37:34otherwise be futile
• 37:36in terms of survival of
• 37:37the infant.
• 37:39That's a long sentence.
• 37:41And the third one, which
• 37:42we slipped in, was the
• 37:44provision of such treatment would
• 37:45be virtually
• 37:46futile.
• 37:47Futile means it doesn't work.
• 37:49Virtually futile
• 37:53means it
• 37:54maybe it will work.
• 37:56Virtually futile.
• 37:58In terms of the survival
• 37:59of the infant and treatment
• 38:01itself under such circumstances
• 38:02would be inhumane.
• 38:04But the most important thing
• 38:06we've slipped in there
• 38:10was the act stated that
• 38:12determination of what counts as
• 38:13medically indicated
• 38:15or beneficial treatment
• 38:17would be left to the
• 38:18treating physician
• 38:19based on what was called
• 38:21reasonable
• 38:22medical
• 38:23judgment,
• 38:24which was a well known
• 38:24legal standard
• 38:27and was reasonable
• 38:29medical judgment.
• 38:31And we went around the
• 38:32country teaching that reasonable
• 38:34medical judgment
• 38:35meant
• 38:37you include parental decision making
• 38:39in reasonable
• 38:41medical judgment.
• 38:43And that actually worked.
• 38:45Although many neonatologists
• 38:47and many in house councils
• 38:49were still nervous
• 38:52about all of this in
• 38:53the nineteen eighties,
• 38:54but we'll get back to
• 38:55that.
• 38:57So there was another baby
• 38:59Doe,
• 39:00Jane Doe in Stony Brook,
• 39:02Long Island.
• 39:04And Jane was born with
• 39:07a a host of abnormalities,
• 39:09very small head,
• 39:11but with a lot of
• 39:12fluid, hydrocephaly,
• 39:14in the head that was
• 39:15very small,
• 39:17which meant
• 39:18that there wasn't very much
• 39:19brain and it was very
• 39:21dysmorphic. It was very abnormal.
• 39:24But she also had spina
• 39:26bifida, an abnormality of the
• 39:28lower spine, a myelomeningocele.
• 39:32The spinal column
• 39:34was really very abnormal.
• 39:37Surgical correction of these abnormalities
• 39:40could be done,
• 39:42would require
• 39:43a lot of surgery,
• 39:45multiple
• 39:46issues,
• 39:47and the doctors offered the
• 39:49family the option of comfort
• 39:50rather than surgical intervention.
• 39:54And the families agreed,
• 39:57thinking that Jane would only
• 39:58suffer and her future would
• 40:00be grim.
• 40:02But an attorney from Albany,
• 40:06well known for his
• 40:08advocating
• 40:08for right to life issues,
• 40:12sought court intervention
• 40:13to force surgical correction of
• 40:15the child's condition.
• 40:17The New York courts ruled
• 40:18that the child's parents, in
• 40:19consultation with their doctors, had
• 40:21the authority
• 40:22to determine the appropriate treatment
• 40:24plan.
• 40:27Well, that was fine until
• 40:29that same attorney
• 40:31asked the United States
• 40:32Supreme Court
• 40:34to opine.
• 40:37So they did. By eighty
• 40:39six,
• 40:40they passed Bowen v American
• 40:43Hospital Association.
• 40:46The decision
• 40:47reinforced the authority of parents
• 40:49in consultation
• 40:50with physicians
• 40:51using reasonable medical judgment on
• 40:54the part of the physicians
• 40:55to make health care decisions.
• 40:57The court decided that the
• 40:59Rehabilitation Act of seventy three,
• 41:01which had been the justification
• 41:03for those signs,
• 41:05didn't apply at all.
• 41:09The court noted that the
• 41:10state authorities had decided that
• 41:11there was no discrimination
• 41:14and that, therefore,
• 41:16doctors and parents
• 41:18ought to be permitted to
• 41:20make these judgments.
• 41:22Now I go through this
• 41:23history
• 41:24not only because I think
• 41:25it's extraordinarily important to the
• 41:27field of neonatology,
• 41:29but also to say
• 41:31that there are people
• 41:33who believe
• 41:35that no child
• 41:37should be permitted to die,
• 41:38even children
• 41:40who are suffering and children
• 41:42who have very grim prognoses.
• 41:45And there are people
• 41:47who
• 41:48don't trust doctors
• 41:51to help families
• 41:52and don't trust doctors
• 41:55that they have their beneficence
• 41:56based obligations to those patients
• 41:59and would not allow families
• 42:01to make judgments
• 42:03about stopping treatment
• 42:05that those doctors thought
• 42:07were not in the interest
• 42:09of those infants.
• 42:12So who should decide for
• 42:13a neonate?
• 42:15Well,
• 42:16we think it should be
• 42:17shared decisions between parents and
• 42:19doctors,
• 42:20with the nurses involved as
• 42:21well.
• 42:23Makes sense.
• 42:24If this evening,
• 42:25on your way home, you
• 42:27stop off at a place
• 42:28to get a little drink,
• 42:30Probably everybody in that
• 42:32tavern's gonna agree with that.
• 42:35They want doctors
• 42:37to give information, to make
• 42:39recommendations,
• 42:40and we want parents
• 42:42to be the decision makers.
• 42:44But what about ethics committees
• 42:47or hospital committees of some
• 42:49kind?
• 42:51Well, they can be available
• 42:52for consultation.
• 42:54They also can be available
• 42:55when parents
• 42:56and physicians disagree
• 42:58on the best interest standard.
• 43:01What about courts?
• 43:02Well, they will be available
• 43:04when there are irreconcilable
• 43:06differences
• 43:08or when
• 43:09doctors wish to override parental
• 43:11refusals,
• 43:12because we can't just
• 43:14go forward except in an
• 43:16extreme emergency
• 43:18without the authority
• 43:20of the state through the
• 43:21courts.
• 43:22What about government?
• 43:25Well,
• 43:26we argued with doctor Koop
• 43:28that if he was so
• 43:30zealous
• 43:30about helping kids
• 43:33who were disabled
• 43:34or going to have cognitive
• 43:36impairment,
• 43:37how about if the government
• 43:39actually funded programs for those
• 43:41kids?
• 43:42And he actually did it.
• 43:45I have to say, he
• 43:47really did in those years.
• 43:50So
• 43:51that's who.
• 43:54How? I've already told you
• 43:55that adults with capacity can
• 43:57refuse,
• 43:58but parents are surrogate decisions.
• 44:01They are assumed decision makers
• 44:03for their children, but they're
• 44:04not autonomous.
• 44:07So what are the standards
• 44:08for surrogate decision makers?
• 44:10If you're making a decision
• 44:11for your loved one,
• 44:13your parent,
• 44:15your spouse, your partner,
• 44:19The first thing we do
• 44:21is we call it call
• 44:22it a substituted judgment.
• 44:26That is to say, we
• 44:27wanna understand the patient's wishes.
• 44:29What would the patient have
• 44:31wanted
• 44:32if the patient could speak
• 44:34for herself or himself?
• 44:37My mother wanted everything done
• 44:40even though she was suffering
• 44:42severely,
• 44:43and I was her surrogate.
• 44:45And it hurt me a
• 44:46lot to let those doctors
• 44:50keep treating her,
• 44:52but that's what she wanted.
• 44:53And she really wanted that.
• 44:56And even when she couldn't
• 44:58decide for herself,
• 45:01we continued treatment.
• 45:03And she died.
• 45:05They were concerned about comfort.
• 45:08But I felt the obligation
• 45:11to do substituted judgment.
• 45:14But if I didn't know
• 45:15her wishes or couldn't know
• 45:17a child's wishes,
• 45:20we use the best interest
• 45:21standard. It's a subjective assessment.
• 45:24It's not an objective assessment.
• 45:26It places
• 45:29the child in the middle
• 45:31of what is an analysis,
• 45:35and it balances
• 45:37the possibility of prolonging life
• 45:40against alleviating suffering.
• 45:42That's what
• 45:43best interest is all about.
• 45:45It's patient focused.
• 45:47It considers the possibility of
• 45:49prolonging life, but it also
• 45:51considers
• 45:52the possibility of alleviating suffering.
• 45:57Now we do shared decision
• 45:58making.
• 46:03Alex Kahn,
• 46:05a pediatric
• 46:06ethicist
• 46:07intensivist,
• 46:09around twenty ten began to
• 46:11talk about this,
• 46:13argued it,
• 46:14said that
• 46:15physicians
• 46:16should never abdicate responsibility
• 46:18for decision making.
• 46:20We're not just waiters
• 46:21who
• 46:23tell you all the things
• 46:24on the menu.
• 46:25We also have responsibility
• 46:27for interacting
• 46:29with those who are decision
• 46:30makers.
• 46:32But we shouldn't be paternalistic.
• 46:35In pediatrics, we might say
• 46:36parentalistic or maternalistic,
• 46:38but we shouldn't be the
• 46:40ethics term is paternalistic.
• 46:42That is, arrogate to ourselves
• 46:44the decision without involving parents.
• 46:48And families' beliefs, values, and
• 46:49preferences
• 46:50should guide that decision making,
• 46:53but they're not autonomous decision
• 46:55makers.
• 46:57And he had this very
• 46:58nice graphic
• 46:59to help us with this
• 47:00shared decision making.
• 47:03But there are limits to
• 47:04parental discretion.
• 47:06And doctor Mercurio
• 47:08has talked a lot about
• 47:09ethically obligatory,
• 47:11ethically optional, and ethically inappropriate
• 47:16decisions
• 47:18or offered treatments.
• 47:19And I'm not gonna go
• 47:20through this whole rubric,
• 47:22but I will say
• 47:24that sometimes treatments are ethically
• 47:26obligatory,
• 47:27and we will not allow
• 47:28parents to refuse them.
• 47:31Those are things that are
• 47:32clearly beneficial with modest risk.
• 47:35We know they're efficacious,
• 47:37and parents, for some reason,
• 47:39it might be a religious
• 47:40belief, it might be a
• 47:41philosophical belief, it may just
• 47:43be
• 47:44they don't wish us to
• 47:45provide it,
• 47:47but we won't let them
• 47:48refuse. But we can't give
• 47:50the treatment unless it's urgent
• 47:52or emergent.
• 47:53We have to go through
• 47:54the state,
• 47:55the authorities,
• 47:56and the court.
• 47:58Most
• 47:59decisions are ethically optional,
• 48:02and some are ethically inappropriate.
• 48:04And they're ethically inappropriate for
• 48:06parents to demand them
• 48:08if they aren't beneficial,
• 48:10and they're ethically inappropriate for
• 48:12doctors to offer them.
• 48:16They're ethically inappropriate for doctors
• 48:18to offer them. And boy,
• 48:20do I have problems
• 48:21with some of my doctors
• 48:23when I tell them that.
• 48:26Just because it's in the
• 48:27toolbox,
• 48:29like a heart transplant
• 48:32or ECMO
• 48:33or dialysis,
• 48:36doesn't mean it gets offered
• 48:37to every patient.
• 48:39For some,
• 48:41it's ethically
• 48:42inappropriate.
• 48:45Okay. We got to Dobbs.
• 48:47Two twenty twenty two,
• 48:49we got to Dobbs.
• 48:52And justice Samuel Alito said
• 48:54we hold that Roe and
• 48:55Casey, that was a derivative
• 48:56of Dobbs, must be overruled.
• 48:59The constitution makes no reference
• 49:01to abortion.
• 49:02It's a hell of a
• 49:03lot the constitution doesn't make
• 49:04reference to, I gotta tell
• 49:05you.
• 49:07What it does make reference
• 49:09to, and please read it,
• 49:12is embarrassing to most Americans,
• 49:14some of those things,
• 49:16like the racism
• 49:17and the misogyny
• 49:19that's embedded
• 49:21in the constitution.
• 49:23But
• 49:24it certainly doesn't mention abortion.
• 49:26And no such right is
• 49:27implicitly protected by any constitutional
• 49:29provision,
• 49:31says our Supreme Court in
• 49:32twenty twenty two,
• 49:34including the one on which
• 49:35the defenders of Roe now
• 49:36chiefly rely the due process
• 49:38clause of the fourteenth amendment.
• 49:42So we have
• 49:44we have Dobbs,
• 49:46and Dobbs leaves to the
• 49:47states, as you well know,
• 49:49the decision
• 49:50about
• 49:52termination
• 49:52of pregnancy.
• 49:55And about one third
• 49:58of America's
• 50:00pregnant persons
• 50:02live in places
• 50:03where there are strong
• 50:06laws
• 50:07that preclude
• 50:09termination of pregnancy.
• 50:12Now that's bad enough in
• 50:13terms of
• 50:15the
• 50:16question
• 50:17of how we treat women,
• 50:20but it also is pretty
• 50:21bad
• 50:23because we're now seeing women
• 50:25who are dying,
• 50:26and it's not one, it's
• 50:28not two.
• 50:29It's a substantial number of
• 50:31women now increasing each and
• 50:33every week
• 50:34who are dying because
• 50:36doctors are not intervening
• 50:38because they fear that the
• 50:40law precludes them from intervening.
• 50:44Now I teach medical students.
• 50:46I teach residents. I teach
• 50:47fellows. I teach attendings.
• 50:49And I applaud people who
• 50:50do civil disobedience
• 50:52when something's ethically appropriate but
• 50:54illegal.
• 50:56But I tell them,
• 50:58and I'll I'll testify for
• 50:59you that it was ethically
• 51:01appropriate.
• 51:03But if you live in
• 51:04Texas, you're gonna go to
• 51:05jail,
• 51:07and you're gonna lose your
• 51:08license in a lot of
• 51:09other states as well.
• 51:11And that's pretty
• 51:13hard to ask doctors and
• 51:15nurses
• 51:16to risk
• 51:18when they think they're doing
• 51:19something that is illegal but
• 51:21correct,
• 51:22ethical.
• 51:25But
• 51:28that argues that the fetus
• 51:30has full moral status beginning
• 51:32at conception,
• 51:33and that fetuses
• 51:35are intrauterine
• 51:36children.
• 51:38That is to say with
• 51:38the same rights and obligations
• 51:41of a child,
• 51:43but yet it's unborn.
• 51:47And just for the fun
• 51:48of it, I threw in
• 51:49this quote from the Alabama
• 51:50Supreme Court
• 51:52from the chief justice Tom
• 51:53Parker.
• 51:54When Alabama
• 51:56stopped in vitro fertilization,
• 51:58because in vitro fertilization, sometimes
• 52:01there are embryos
• 52:02that need to be discarded,
• 52:05not because we don't like
• 52:07them,
• 52:07but because they either are,
• 52:10abnormal,
• 52:11they can't be implanted,
• 52:14the families no longer wish
• 52:16to freeze them.
• 52:19And he said human life
• 52:21cannot be wrongfully destroyed without
• 52:22incurring the wrath of a
• 52:24holy god who views the
• 52:25destruction of his image as
• 52:27an affront to himself.
• 52:29Now this is a
• 52:31chief justice
• 52:33talking
• 52:35religious language,
• 52:37God language.
• 52:39Interesting.
• 52:41The legislature has the duty
• 52:42to provide legal protection to
• 52:44unborn life without exception,
• 52:47fetuses are intrauterine children, and
• 52:50embryos
• 52:51are extrauterine children.
• 52:55Well,
• 52:56the reason I bring this
• 52:58out is because
• 53:00newborns
• 53:02are extrauterine
• 53:03children.
• 53:06We happen to think they
• 53:07have some legal and moral
• 53:08status,
• 53:10but this kind of language
• 53:13is going to be
• 53:14present
• 53:16in a lot of thinking,
• 53:18in a lot of states.
• 53:19And maybe,
• 53:21I didn't know on the
• 53:22way here whether
• 53:24the house is gonna be
• 53:25Republican, but we know the
• 53:27Senate is gonna be Republican,
• 53:29and we know
• 53:30the executive
• 53:31is going to be president
• 53:33Trump.
• 53:35I'm not sure what he
• 53:35is, but,
• 53:38alright.
• 53:39I'll I'll stop. I won't
• 53:41go there. Alright.
• 53:43Now the American Academy of
• 53:45Pediatrics,
• 53:46the pediatric
• 53:48physicians organization,
• 53:50basically argues
• 53:53and in two thousand and
• 53:54seven,
• 53:55for the first time
• 53:57we involved with this one?
• 53:59Two thousand seven? No. Okay.
• 54:01It is I like it.
• 54:02I don't like it. You
• 54:03know? It is inappropriate for
• 54:04life prolonging treatment to be
• 54:06continued when the condition is
• 54:07incompatible with life or when
• 54:09the treatment is judged to
• 54:10be harmful or of no
• 54:11benefit.
• 54:12So the academy for the
• 54:13first time was getting into
• 54:15this game, saying to pediatricians,
• 54:17hey.
• 54:18Sometimes we have to
• 54:20withdraw
• 54:21life sustaining treatment.
• 54:23But in twenty seventeen, they
• 54:24went one step further.
• 54:27In fact, they said it
• 54:28may be ethically supportable to
• 54:29forego life sustaining medical treatment
• 54:31without family agreement
• 54:34in rare circumstances
• 54:36of extreme burden of treatment
• 54:38with no benefit to the
• 54:40patient beyond postponement of death.
• 54:45Ethically
• 54:46inappropriate
• 54:47treatment
• 54:49if the child's going to
• 54:51merely
• 54:52be prolonging dying.
• 54:55And it is ethically supportable
• 54:56for decisions about foregoing life
• 54:58sustaining medical treatment be determined
• 55:00by parental preferences.
• 55:02It's very hard for doctors
• 55:05to have two same medical
• 55:06conditions,
• 55:08two different families,
• 55:10one who asks us to
• 55:11continue treatment and one who
• 55:13asks us to forego treatment.
• 55:16It's very hard for doctors.
• 55:18It's very hard for nurses.
• 55:21I think it's less hard
• 55:22for nurses.
• 55:24Although my nurses
• 55:26will often tell me,
• 55:28that the family hasn't yet
• 55:30come to
• 55:31understanding
• 55:33that their baby is dying
• 55:35or has a very grim
• 55:37future.
• 55:38And we need to give
• 55:38them a little more time,
• 55:40but they'll get there.
• 55:45All states have surrogate decision
• 55:46many, not almost all, almost
• 55:48all, not every state, have
• 55:49surrogate decision making laws.
• 55:52And I looked up Connecticut
• 55:53and I
• 55:55figured out you got one.
• 55:57There's a code.
• 55:58And there's a code in
• 55:59Alabama
• 56:01where that
• 56:02Supreme Court justice
• 56:04lives.
• 56:05I know the one in
• 56:06New York pretty well because
• 56:07I helped to write it.
• 56:08And
• 56:11in New York,
• 56:12we say there are medical
• 56:14predicates
• 56:16needed
• 56:17before
• 56:18physicians may withdraw
• 56:20treatment
• 56:21or write a do not
• 56:23attempt resuscitation
• 56:24order.
• 56:26We have to have certain
• 56:28standards. We have to draw
• 56:30certain lines,
• 56:34And that's true in almost
• 56:35all surrogate decision making
• 56:37laws.
• 56:40So will Dobbs' decision inevitably
• 56:43impact on neonatal care?
• 56:46My answer is yes.
• 56:49Even though we live in
• 56:49a pluralistic society, not a
• 56:51theocracy,
• 56:53and we have a constitutional
• 56:54right to expect that, and
• 56:56this is from the constitution,
• 56:58Congress shall make no law
• 56:59respecting
• 57:00an establishment of religion or
• 57:02prohibiting
• 57:03the free exercise thereof.
• 57:07The current Supreme Court reversed
• 57:09Roe v Wade, which will
• 57:10permit states to impose a
• 57:12theocratic belief that personhood begins
• 57:14at conception,
• 57:16and some states have.
• 57:19Embryos are considered to be
• 57:21extrauterine children.
• 57:23That may not be destroyed,
• 57:24and fetuses are morally and
• 57:25legally equivalent to children.
• 57:27So even if a fetus
• 57:28has an abnormality that will
• 57:30result in its death
• 57:32shortly after birth, the pregnancy
• 57:34may not be terminated
• 57:36in many of those states.
• 57:40So some people will argue
• 57:42that parents may not be
• 57:43permitted
• 57:44to agree to comfort care
• 57:46rather than resuscitation
• 57:47for fetuses
• 57:49at the threshold of viability.
• 57:51Twenty two, twenty three weeks.
• 57:53When neonatologists
• 57:55are now offering parents choices
• 57:58about should we
• 58:00attempt resuscitation,
• 58:02or should we
• 58:05give comfort care?
• 58:07And, also, for neonates,
• 58:11parents will not be offered
• 58:12the potential of withholding or
• 58:14withdrawing of treatment
• 58:15when benefits of further treatment
• 58:17do not outweigh the burdens
• 58:19and the future quality of
• 58:20life is likely very grim.
• 58:26So what's the framework
• 58:28that those neonatologists
• 58:30ought to be ready
• 58:32to tell people?
• 58:35Well, I hope I've laid
• 58:37it out for you.
• 58:38Parents are the appropriate legal
• 58:40surrogates for their children.
• 58:42Our society believes that,
• 58:44gives them great deference.
• 58:46But surrogates should be able
• 58:48to make health care decisions
• 58:49to their loved ones
• 58:51based on
• 58:52a best interest standard
• 58:54when prior wishes are unknown.
• 58:57And although I talk to
• 58:58neonates all the time,
• 59:01I
• 59:02don't think they can tell
• 59:04me their values and their
• 59:05wishes, except sometimes they pull
• 59:07out a tube. You know?
• 59:11Anyway,
• 59:12without kidding about it,
• 59:14just because children cannot give
• 59:16us their values and wishes
• 59:18doesn't mean we shouldn't be
• 59:20allowed to make decisions for
• 59:21them. We can make decisions
• 59:23for the elderly
• 59:24and for our spouses
• 59:27if they're suffering
• 59:29and we don't know their
• 59:30wishes.
• 59:31We make a best interest
• 59:33assessment.
• 59:34And pediatricians
• 59:35practice shared decision making.
• 59:38It's not just whatever the
• 59:40parents says.
• 59:43Physicians are gatekeepers,
• 59:45ethically obligated to advocate for
• 59:47the interests of their patients
• 59:48and offer non resuscitation and
• 59:50withdrawal of treatment only for
• 59:52patients
• 59:53who meet the generally agreed
• 59:55upon criteria
• 59:56that the child is suffering
• 59:59or comatose
• 01:00:00or the burdens of continued
• 01:00:02treatment do not outweigh the
• 01:00:03benefits and the future quality
• 01:00:05of the child's life
• 01:00:06appears grim.
• 01:00:08That's what
• 01:00:10the fellows in neonatology
• 01:00:11and the residents in pediatrics
• 01:00:13are learning from the pediatric
• 01:00:15ethics people
• 01:00:17about
• 01:00:18when
• 01:00:19do we permit patients'
• 01:00:21families
• 01:00:22to make these choices.
• 01:00:24So I wanna thank you
• 01:00:26for allowing me to
• 01:00:28tell you this story.
• 01:00:30It's something that I think
• 01:00:32needs
• 01:00:33telling for the neonatal and
• 01:00:35infant world.
• 01:00:36I think it's a future
• 01:00:37we're going to face based
• 01:00:38on a history
• 01:00:40that we've already faced
• 01:00:43and the current status
• 01:00:45of what's going on both
• 01:00:47in nurseries
• 01:00:48and in many of the
• 01:00:49states
• 01:00:50outside the northeast.
• 01:00:52Thank you.
• 01:01:00Thank you, Al. Thank you
• 01:01:02so much. That was excellent.
• 01:01:03Now what we're gonna do
• 01:01:04for the next little while
• 01:01:06until six thirty, unless we
• 01:01:08have, we have plenty of
• 01:01:09time for questions or comments.
• 01:01:11Alan, what I'm gonna do
• 01:01:12is I'm gonna give one
• 01:01:13of these to you. Okay?
• 01:01:14So you've got
• 01:01:16there we go.
• 01:01:17And and
• 01:01:19I will, happily but do
• 01:01:20me if you happily take
• 01:01:21questions or comments,
• 01:01:23for the next little while.
• 01:01:24What I will yeah. Let's
• 01:01:25just expand it over so
• 01:01:26the folks on Zoom can
• 01:01:27see Alan.
• 01:01:29They didn't pay all this
• 01:01:30money to look at me.
• 01:01:31There we go. He's he's
• 01:01:32moving around. He's moving targets.
• 01:01:34I'm not There you go.
• 01:01:35Over here. It's all good.
• 01:01:38Can we turn off the
• 01:01:39screen behind us? I think
• 01:01:40that'll help this as well
• 01:01:41because this all turned dark.
• 01:01:43So,
• 01:01:44questions or comments? Alan, I
• 01:01:46I would I'll I'll take
• 01:01:47the first, question comment. Just
• 01:01:49the the easy one, which
• 01:01:50is to to echo an
• 01:01:51important point you made and
• 01:01:53to and to amplify a
• 01:01:54little bit, which is that
• 01:01:55so what there was an
• 01:01:56executive order, which I'm sure
• 01:01:57you're familiar with, which came
• 01:01:58out long not long ago.
• 01:01:59And there was,
• 01:02:02this was actually during the
• 01:02:03previous Trump administration, but the
• 01:02:04Biden administration chose not to
• 01:02:06reverse it. And it, again,
• 01:02:07had to do with decision
• 01:02:08making of parental discretion
• 01:02:10at borderline viability.
• 01:02:12And and a few of
• 01:02:13us wrote, an editorial about
• 01:02:15this,
• 01:02:17and, specifically, it it we
• 01:02:18thought that it represented injustice.
• 01:02:20We made that argument because
• 01:02:21the the the rationale for
• 01:02:22the executive order, it started
• 01:02:23out with talking about how
• 01:02:24we think that premature babies
• 01:02:26should have the same rights
• 01:02:27as everybody else.
• 01:02:28And so
• 01:02:30the way we wrote the
• 01:02:31response was absolutely right. And
• 01:02:33therefore, since everybody else gets
• 01:02:34a surrogate decision maker who
• 01:02:36can decide
• 01:02:37based on
• 01:02:38substitute judgment or in the
• 01:02:40absence of that patient's best
• 01:02:41interest, babies deserve the same
• 01:02:42thing. They deserve a surrogate
• 01:02:43decision maker who can speak
• 01:02:45to their best interest.
• 01:02:48You know, and like most
• 01:02:49things that that one publishes
• 01:02:50in pediatrics or journal pediatrics,
• 01:02:52the world doesn't necessarily jump
• 01:02:53up and take notice right
• 01:02:55away. But but it it's
• 01:02:56an important point, and I
• 01:02:57appreciate you making it. That
• 01:02:59it seems a fundamental unfairness
• 01:03:00to these babies to say
• 01:03:01that, no. There can be
• 01:03:02no discretion
• 01:03:03with regard to their care,
• 01:03:04whereas there can for all
• 01:03:05the rest of us.
• 01:03:07So I appreciate you making
• 01:03:08that point. And, of course,
• 01:03:09the history and, of course,
• 01:03:10your part in so much
• 01:03:11of it was so important.
• 01:03:14So this is real. So
• 01:03:15I'm I'm glad you guys
• 01:03:16had a chance to actually
• 01:03:17hear Alan walk through this,
• 01:03:19because
• 01:03:20this is kind of coming.
• 01:03:21I won't say a crescendo
• 01:03:22because this is gonna come
• 01:03:23in waves, the things we're
• 01:03:24gonna have to deal with
• 01:03:25for forever.
• 01:03:26But I've already heard from
• 01:03:28colleagues in other states. And
• 01:03:29one reason why we wrote
• 01:03:30that,
• 01:03:31that editorial,
• 01:03:33was because people were feeling
• 01:03:34pressured to do things they
• 01:03:35didn't think were right. Feeling
• 01:03:36pressured, basically, to deny parents
• 01:03:38any discretion where most neonatologists
• 01:03:40think they deserve some.
• 01:03:43So it's it's real. It's
• 01:03:44now, and it is likely
• 01:03:45not gonna get better anytime
• 01:03:47soon. It was real in
• 01:03:48the nineteen eighties also.
• 01:03:51And one of the things
• 01:03:52that,
• 01:03:55as one looks at those
• 01:03:56bioethics
• 01:03:57consults that folks like Martin,
• 01:04:01I do.
• 01:04:03In the beginning,
• 01:04:05in the 1980s,
• 01:04:08we were concerned
• 01:04:10about
• 01:04:11parents not wishing us to
• 01:04:14treat babies
• 01:04:16who had very good prognosis
• 01:04:19but had some problems
• 01:04:21that the families weren't ready
• 01:04:24to address.
• 01:04:26Now, we were sympathetic to
• 01:04:27that. We wanted resources to
• 01:04:29help them,
• 01:04:31but we weren't sympathetic
• 01:04:33to allowing those babies
• 01:04:35to have their treatments withdrawn.
• 01:04:37That was a lot of
• 01:04:38what we talked about in
• 01:04:39the eighties.
• 01:04:41Well, what we're talking about
• 01:04:42in the twenty twenties
• 01:04:45is families who want everything
• 01:04:47done
• 01:04:48and doctors
• 01:04:50who are fairly clear
• 01:04:52that
• 01:04:53they're not going to be
• 01:04:54able to turn around
• 01:04:56those infants.
• 01:04:57We may be able to
• 01:04:58save their lives
• 01:04:59and they're going
• 01:05:01to
• 01:05:02be comatose or on respirators
• 01:05:04forever,
• 01:05:06feeding with a feeding tube,
• 01:05:08not interacting in their families.
• 01:05:10Now, if families wish us
• 01:05:11to do that, we will
• 01:05:13do it
• 01:05:14because we respect
• 01:05:16the family's authority,
• 01:05:18but the clinicians
• 01:05:19suffer a great deal.
• 01:05:21And my nurses tell me
• 01:05:22all the time
• 01:05:23that it must be the
• 01:05:25doctors who can't convince those
• 01:05:27parents.
• 01:05:27And, of course, it's not.
• 01:05:29It's the families who have
• 01:05:30not yet
• 01:05:32come
• 01:05:33to acceptance
• 01:05:34or they have a very
• 01:05:36strong belief
• 01:05:37in either God
• 01:05:39or other,
• 01:05:41philosophical beliefs
• 01:05:43about it's not their
• 01:05:45decision.
• 01:05:46And some families,
• 01:05:48and Khan talks about this,
• 01:05:50can't face it.
• 01:05:52They just won't make those
• 01:05:54decisions.
• 01:05:55And those decisions,
• 01:05:58are sometimes the hardest
• 01:06:01to help the families with
• 01:06:03because they're incapable of making
• 01:06:04them.
• 01:06:05But from this perspective, from
• 01:06:07the Dobbs' perspective,
• 01:06:08we're going to see legislators,
• 01:06:10we're going to see
• 01:06:12strong
• 01:06:13theocratic thinking
• 01:06:15about
• 01:06:16the right to life.
• 01:06:19And we've talked a lot
• 01:06:22with people who are true
• 01:06:24right to life
• 01:06:25believers.
• 01:06:26And I respect those people.
• 01:06:29I I do.
• 01:06:30And as Joe Biden says
• 01:06:31in his family,
• 01:06:33abortion is not consideration.
• 01:06:36I have great respect for
• 01:06:38that.
• 01:06:39Just don't make it in
• 01:06:40my family,
• 01:06:43because we do have a
• 01:06:44pluralistic society,
• 01:06:46not a theocratic one. So
• 01:06:47I think in this theocratic
• 01:06:49story
• 01:06:49that we're seeing now
• 01:06:52and there are a lot
• 01:06:53of our
• 01:06:54legislators
• 01:06:56who are actually talking theocratic
• 01:06:57language,
• 01:06:59which is very troubling,
• 01:07:02I think.
• 01:07:03But to stay away from
• 01:07:04that because I'm not sure
• 01:07:06we're gonna win
• 01:07:07by making that argument,
• 01:07:10I think Mark's argument is
• 01:07:11the right one.
• 01:07:13Let's not discriminate against babies
• 01:07:15Sure. Because they can't speak
• 01:07:16for themselves.
• 01:07:18And the doctors and the
• 01:07:19parents
• 01:07:20are going to have to
• 01:07:21do that shared decision making,
• 01:07:23and we've gotta protect
• 01:07:25those babies
• 01:07:27from Just for my overtreatment.
• 01:07:30Go ahead. Very dark. So
• 01:07:31let's take a few minutes,
• 01:07:32but I will answer a
• 01:07:33question. Please to wait for
• 01:07:34the microphone so that the
• 01:07:36folks on Zoom get a
• 01:07:36chance to hear. You know,
• 01:07:37you can relax now. Look.
• 01:07:38I we got other guys.
• 01:07:39We'll do the work here.
• 01:07:42Thanks very much. Go ahead,
• 01:07:43please. Thank you. So I'm
• 01:07:45one of those parents who
• 01:07:46had a difficult choice in
• 01:07:48nineteen seventy six
• 01:07:49whether to
• 01:07:52kill my son or, you
• 01:07:54know, get an operation. When
• 01:07:56he was born, we noticed
• 01:07:58that his eyes were not
• 01:07:59focusing,
• 01:08:00took him back to the
• 01:08:00pediatrician,
• 01:08:02and she said I'll give
• 01:08:03him some testing. And when
• 01:08:04she did, she found out
• 01:08:05that he had no brain
• 01:08:07tissue. He was gonna be
• 01:08:08hydrocephalic,
• 01:08:10and whatnot.
• 01:08:11And just as a sidebar,
• 01:08:14the cure for that was
• 01:08:16invented or created by a
• 01:08:18plumber because in the fifties,
• 01:08:20his daughter had the same
• 01:08:22illness. And the plumber said
• 01:08:23to the doctor, well, put
• 01:08:24a valve in her head.
• 01:08:25I deal with this every
• 01:08:26day. And, you know, when
• 01:08:27hot water heaters, they get
• 01:08:28over and
• 01:08:30water is released.
• 01:08:31And so, the shout out
• 01:08:33is this. We did that,
• 01:08:35and we came to Yale.
• 01:08:36Yale,
• 01:08:37put the valve in my
• 01:08:39son's head. Doctor Snow was
• 01:08:41there and that was her
• 01:08:42last surgery that she did
• 01:08:44and moved down to Texas.
• 01:08:46Ironically,
• 01:08:46when you know, to see
• 01:08:48where they're not where they're
• 01:08:49banning all that stuff. But,
• 01:08:51I asked her,
• 01:08:53so what's his life expectancy?
• 01:08:55How long? We know he's
• 01:08:56not going to be, you
• 01:08:57know, riding bicycles and what
• 01:08:59not. But she said he
• 01:09:00might live two weeks, two
• 01:09:02months, two years, we don't
• 01:09:03know.
• 01:09:04And,
• 01:09:05God bless him, he lived
• 01:09:06for forty four years and,
• 01:09:08he he taught me a
• 01:09:09lot. So that phrase, a
• 01:09:11meaningful life, he taught me
• 01:09:13a lot in what's really
• 01:09:15important in life. So we
• 01:09:16were one of those parents
• 01:09:17that you speak about. Right.
• 01:09:18Well, thank you for sharing
• 01:09:19that because that's really helpful.
• 01:09:22I think, to this audience
• 01:09:23who may not have had
• 01:09:24such a meaningful experience.
• 01:09:28And
• 01:09:29I greatly respect what you
• 01:09:31did for that
• 01:09:32child.
• 01:09:34And I would argue had
• 01:09:35you
• 01:09:37decided not to seek out
• 01:09:38doctor Snow's help,
• 01:09:40that I would greatly respect
• 01:09:41your having done that as
• 01:09:43well.
• 01:09:44And I would have counseled
• 01:09:45you that you wouldn't be
• 01:09:47killing
• 01:09:48your child.
• 01:09:49You'd be allowing
• 01:09:51nature to take its course.
• 01:09:53And you had, in my
• 01:09:55opinion,
• 01:09:56the authority to do that.
• 01:09:58And I try to help
• 01:09:59you in understanding, and I
• 01:10:01say this to many parents.
• 01:10:03Many loving parents
• 01:10:05would ask us to intervene.
• 01:10:08And I respect those loving
• 01:10:09parents.
• 01:10:10And many other loving parents
• 01:10:13would ask us not to
• 01:10:14intervene.
• 01:10:15And I respect those parents
• 01:10:16too. And I use the
• 01:10:18word loving
• 01:10:20because
• 01:10:20I think parents need permission
• 01:10:23to do a or b.
• 01:10:26And remember,
• 01:10:27for those who do this
• 01:10:28work,
• 01:10:30that
• 01:10:31their parents
• 01:10:32and I'm not going to
• 01:10:33probe you on this. But
• 01:10:35parents are part of families,
• 01:10:37and there's always somebody
• 01:10:39who's not in the room
• 01:10:41when you're talking to the
• 01:10:42parents
• 01:10:44who's gonna criticize
• 01:10:46or comment
• 01:10:48or think they have a
• 01:10:49better idea of what the
• 01:10:50right decision is. And I
• 01:10:51always tell
• 01:10:53the fellows,
• 01:10:54ask the families who's not
• 01:10:57at this family meeting
• 01:10:59who we can talk with
• 01:11:00with your permission
• 01:11:02because we know that you
• 01:11:04may take some heat
• 01:11:06when
• 01:11:07you go home and try
• 01:11:08to explain
• 01:11:09what the doctors told you.
• 01:11:11And they say, oh, they
• 01:11:12couldn't have said that. No.
• 01:11:13No. No. No. No. No.
• 01:11:14Whatever.
• 01:11:15Sometimes it's a doctor. Sometimes
• 01:11:16it's a nurse. Sometimes it's
• 01:11:18just an aunt,
• 01:11:20or a grandma.
• 01:11:21But it's important to realize
• 01:11:23that these are really hard
• 01:11:24decisions. And that's what Duffin
• 01:11:26Campbell said in that article
• 01:11:29in nineteen seventy three.
• 01:11:31Thank you very much. I
• 01:11:32really appreciate that. Thank you.
• 01:11:33Other questions. Yes, please. Carmen.
• 01:11:35Yes.
• 01:11:36Thank you for your talk.
• 01:11:38I am not a clinician,
• 01:11:39and the history of this
• 01:11:40is very exciting. Me a
• 01:11:41favor. Hold that a little
• 01:11:42bit closer. Thanks.
• 01:11:44Here. Better.
• 01:11:45Okay.
• 01:11:47Not a clinician. So this
• 01:11:48was very
• 01:11:49insightful
• 01:11:50kind of putting it into
• 01:11:51the historical context.
• 01:11:53I'm curious
• 01:11:54in your experience,
• 01:11:56how
• 01:11:58common or not is it
• 01:11:59that the shared decision making
• 01:12:02is in disagreement
• 01:12:04between the parents and the
• 01:12:05doctors and
• 01:12:07to the degree that it's
• 01:12:08an ethical problem for the
• 01:12:09well-being of the child?
• 01:12:12How do you mediate that?
• 01:12:14Well, that's, you know, that's
• 01:12:15why they pay Mercurio the
• 01:12:16big bucks as a bioethics
• 01:12:18guy consultant.
• 01:12:19They don't pay me much
• 01:12:20anymore.
• 01:12:21But, no, without kidding,
• 01:12:24it does happen.
• 01:12:25And I have to say
• 01:12:26that I make rounds in
• 01:12:28the neonatal unit with the
• 01:12:29neonatologist,
• 01:12:30and I make rounds in
• 01:12:31the pediatric ICU with the
• 01:12:33critical care docs, which aborts
• 01:12:35lots of those consults.
• 01:12:37Because before
• 01:12:38those issues become adversarial,
• 01:12:41we're often
• 01:12:43comfortably sitting down with families,
• 01:12:46admiring
• 01:12:47their views and values, and
• 01:12:48keeping the docs from becoming
• 01:12:50adversarial.
• 01:12:52So
• 01:12:53but it's not unusual.
• 01:12:55I mean, it's at least
• 01:12:56once a month in a
• 01:12:57fairly large academic medical center
• 01:13:00with lots of, you know,
• 01:13:01sick kids.
• 01:13:04Conflict occurs,
• 01:13:06but as I was saying,
• 01:13:07it's more common now that
• 01:13:09it's because the families have
• 01:13:11inappropriate I don't wanna say
• 01:13:12inappropriate. They have very high
• 01:13:13expectations
• 01:13:16for what doctors
• 01:13:17can do.
• 01:13:19And the doctors have perhaps
• 01:13:21more realistic
• 01:13:22expectations for what they can
• 01:13:24do.
• 01:13:25And part of that has
• 01:13:26to do with television, and
• 01:13:28part of it has to
• 01:13:28do with articles,
• 01:13:30which, you know, say we
• 01:13:31do miracles.
• 01:13:32Well, yeah, there's a lot
• 01:13:33of miracles, but there's also
• 01:13:35a lot of
• 01:13:36we can't.
• 01:13:37So it's not uncommon. It's
• 01:13:39not uncommon.
• 01:13:41And, unfortunately,
• 01:13:43sometimes the bioethicist get called
• 01:13:45a little late,
• 01:13:47when it's already adversarial.
• 01:13:51Thank you.
• 01:13:52Ben.
• 01:13:53So so relating to these
• 01:13:55cases where,
• 01:13:56there there's
• 01:13:57irreconcilable
• 01:13:58disagreement,
• 01:14:00often where their requests for
• 01:14:03interventions that are assessed by
• 01:14:05the medical team to to
• 01:14:07be more harmful than beneficial
• 01:14:09on the adult side. So
• 01:14:10I'm a adult ethicist and
• 01:14:12clinician.
• 01:14:13On the adult side, in,
• 01:14:15twenty fifteen, the American Thoracic
• 01:14:16Society and the Society for
• 01:14:17Critical Care Medicine, about this
• 01:14:18position statement and sort of
• 01:14:20laid out a framework. He
• 01:14:21was there too. You know?
• 01:14:22The pediatricians were at that
• 01:14:23meeting. You were he agreed
• 01:14:25to that statement. I see.
• 01:14:26You you weren't one of
• 01:14:27the signers. No. But there
• 01:14:29were there are bunch of
• 01:14:30pediatricians who actually signed on
• 01:14:31it. Onto that. Okay. Just
• 01:14:33so you know. So so
• 01:14:34so I guess that's sort
• 01:14:35of my question. You so
• 01:14:36so on the pediatric side,
• 01:14:38you you would also favor
• 01:14:39sort of use of
• 01:14:41a written
• 01:14:44policy
• 01:14:45to to
• 01:14:46to sort of to guide
• 01:14:48the,
• 01:14:50deliberation around those situations? I'm
• 01:14:53I'm curious. Like
• 01:14:55yes.
• 01:14:57The short answer is yes.
• 01:14:58I think it's a really
• 01:14:59good idea.
• 01:15:01But these policies are really
• 01:15:05up to the people who
• 01:15:06are are using them.
• 01:15:08If they're not law,
• 01:15:10they're guidance.
• 01:15:12They give you some standing
• 01:15:13as an authority, as a
• 01:15:15critical care doc, as a
• 01:15:16a surgeon, whatever it is
• 01:15:18that, you know, your your
• 01:15:19particular
• 01:15:20interest is.
• 01:15:22But it really is a
• 01:15:23process,
• 01:15:25and it's only a process.
• 01:15:27And sometimes, push comes to
• 01:15:28shove. And unless you have
• 01:15:30a law in your state,
• 01:15:32as they do in Texas
• 01:15:34and in California,
• 01:15:36there are futility laws.
• 01:15:38There's none in Connecticut that
• 01:15:39I know of. It's certainly
• 01:15:41not in New York. In
• 01:15:42Massachusetts,
• 01:15:43there's a lot of futility
• 01:15:44language in the case law.
• 01:15:48You can go through those
• 01:15:49processes,
• 01:15:50But when push comes to
• 01:15:51shove, if you're still in
• 01:15:52conflict at the end,
• 01:15:56you're gonna probably need your
• 01:15:58hospital lawyers
• 01:15:59and your medical director
• 01:16:01to be sure that you're,
• 01:16:04able to call out futility.
• 01:16:07Because these are all futility
• 01:16:08standards, really.
• 01:16:10So,
• 01:16:11I don't I I say
• 01:16:12to you, I think it's
• 01:16:13really good
• 01:16:14for for units
• 01:16:17to think through the process,
• 01:16:19commit to the process, teach
• 01:16:20the process, and implement the
• 01:16:22process.
• 01:16:23But when you at the
• 01:16:24end of the process, if
• 01:16:25you're still in conflict,
• 01:16:28it's not so easy to
• 01:16:30hack.
• 01:16:31Yeah. So so we we
• 01:16:32have a system wide policy,
• 01:16:34and and it it
• 01:16:36includes
• 01:16:37as sort of the final
• 01:16:38step consultation with our legal
• 01:16:40team and our and our
• 01:16:42chief medical officer and Right.
• 01:16:43Right.
• 01:16:45And, you know, and they
• 01:16:45can be very helpful. And
• 01:16:47sometimes,
• 01:16:48they'll let you go ahead
• 01:16:50and do what you think
• 01:16:51is in the best interest
• 01:16:52of that patient,
• 01:16:54overriding
• 01:16:55surrogate decision making. But, you
• 01:16:57know, in in my experience,
• 01:16:58that's a very learned
• 01:17:01legal counsel.
• 01:17:05So what was the name
• 01:17:06of the Yale
• 01:17:07legal counsel, the woman who
• 01:17:08wrote about Angela Holder. Angela
• 01:17:10Holder. One of the great,
• 01:17:12great
• 01:17:13attorney ethicists
• 01:17:15in the history of the
• 01:17:16twentieth century,
• 01:17:19who was both the lawyer
• 01:17:20for Yale University
• 01:17:22and for the medical system.
• 01:17:25And she
• 01:17:27would support those doctors,
• 01:17:29and be helpful to them
• 01:17:31in a very sensitive and
• 01:17:32caring way. Yeah. And I
• 01:17:34think there are people here
• 01:17:35now in leadership who are
• 01:17:35supportive of these things sometimes
• 01:17:37as well. And, Ben, you
• 01:17:37would know this better than
• 01:17:38I at this point. Ben
• 01:17:39shares the the adult, ethics
• 01:17:41program for the whole health
• 01:17:42system.
• 01:17:43But I I think that
• 01:17:44it's important to point out
• 01:17:45that even if the chief
• 01:17:46medical officer,
• 01:17:47and the, hospital attorney agree
• 01:17:49with you that you shouldn't
• 01:17:50this need to go forward,
• 01:17:51that's still not legal protection.
• 01:17:53That's that's support, but that
• 01:17:55doesn't that doesn't in the
• 01:17:56way that, for example, the
• 01:17:57Texas law actually provides protection,
• 01:17:59that's not really that's a
• 01:18:00little bit of cover, but
• 01:18:01it's not perfect legal protection.
• 01:18:03Yeah. So so in Connecticut,
• 01:18:04there is a withdrawal of
• 01:18:06life sustaining treatment
• 01:18:12law. So so if if
• 01:18:13you
• 01:18:14assess that the patient's in
• 01:18:15a terminal condition
• 01:18:17and,
• 01:18:19in the best judgment of
• 01:18:20the clinical team, the intervention
• 01:18:22in question is not
• 01:18:24beneficial. It's more harmful than
• 01:18:25beneficial.
• 01:18:26And if you have considered,
• 01:18:28but not necessarily
• 01:18:30follow
• 01:18:31the patient's wishes,
• 01:18:33that then
• 01:18:34you're
• 01:18:36actually protected
• 01:18:37from,
• 01:18:42litigation.
• 01:18:43Litigation. Yeah. And and and
• 01:18:46we rely on that statute
• 01:18:49whenever we use this model.
• 01:18:50Statute is specific to terminal
• 01:18:51illness. Yeah? Yeah. Yeah. So
• 01:18:52you have to make an
• 01:18:53assessment of the patient's in
• 01:18:54a terminal condition. There's a
• 01:18:55there's a technical meaning of
• 01:18:56terminal condition. Basically, you're you're
• 01:18:57I'm sure your risk manager
• 01:18:59has taught you to make
• 01:19:00that chart
• 01:19:02reflect
• 01:19:03the language of that law.
• 01:19:04Exactly.
• 01:19:05Yeah. Okay. Thank you. Thank
• 01:19:07you. So there's a gentleman,
• 01:19:08close behind you, Ben. He's
• 01:19:09got Michael. Alright? Just as
• 01:19:10another comment, I read that
• 01:19:12law in preparation for this.
• 01:19:14And I I think it's
• 01:19:15helpful. I really do.
• 01:19:18But I I think
• 01:19:20you can still get sued,
• 01:19:22and your lawyers will be
• 01:19:24right there with you. Making
• 01:19:25the argument. Yeah. Making the
• 01:19:26argument.
• 01:19:27Hey. So thank you so
• 01:19:29much for your,
• 01:19:30talk and also your story
• 01:19:32about what kind of the
• 01:19:33situation of the nineteen
• 01:19:35sixties with the plaques and
• 01:19:36how you managed to spin
• 01:19:37that into actually more funding
• 01:19:39for disabled
• 01:19:41infants with those conditions. And,
• 01:19:42honestly, I was kind of
• 01:19:43inspired by that. So I
• 01:19:44was wondering, obviously,
• 01:19:47legal the legal, like, laws
• 01:19:49are under no obligation to
• 01:19:50be consistent.
• 01:19:51So defining a fetal person
• 01:19:54as a person in terms
• 01:19:55of our medical care doesn't
• 01:19:56automatically mean that any other
• 01:19:58part of the law has
• 01:19:59to consider them a fetus
• 01:20:00a fetus, an actual person.
• 01:20:02But do you think that
• 01:20:03there's any way that we
• 01:20:04could almost replicate your success
• 01:20:06with those signage cards in
• 01:20:08the ORs and maybe be
• 01:20:10able to spin or convince
• 01:20:11people in the up this
• 01:20:12in the upcoming administration
• 01:20:14that if they're going to
• 01:20:15define fetuses as people, they
• 01:20:16should increase funding
• 01:20:19for fetal illnesses or maternal
• 01:20:20care? Or how might we
• 01:20:21kind of replicate your success
• 01:20:23with doing this before?
• 01:20:24The American College of Obstetricians
• 01:20:26and Gynecologists and the American
• 01:20:27Academy of Pediatrics
• 01:20:29have been talking about this.
• 01:20:33And by all means,
• 01:20:34they're prepared to,
• 01:20:37confront
• 01:20:38any
• 01:20:39bills that are raised in
• 01:20:41Congress
• 01:20:42and add to them as
• 01:20:44best we can in our,
• 01:20:45you know, in our lobbying
• 01:20:47or educating.
• 01:20:49And I think that's possible.
• 01:20:51It really is. Also, you
• 01:20:53know, in this country,
• 01:20:55adoption
• 01:20:56is not
• 01:20:57a very,
• 01:21:01positive
• 01:21:02attribute.
• 01:21:04We're not helping people with
• 01:21:06adoptions.
• 01:21:07We're not suggesting
• 01:21:09to people that there is
• 01:21:11a good that comes from
• 01:21:13loving couples adopting children.
• 01:21:16And that too ought to
• 01:21:17be part
• 01:21:19of our, you know,
• 01:21:21talking
• 01:21:22about these issues.
• 01:21:24We leave to those families
• 01:21:25who are forced not to
• 01:21:26have abortions
• 01:21:28to consider adoption.
• 01:21:31But it it,
• 01:21:33I I think you're right.
• 01:21:34The reason I went through
• 01:21:35the whole thing with Coop
• 01:21:36and Reagan is because we
• 01:21:38were successful.
• 01:21:39And I think we can
• 01:21:40be successful
• 01:21:42if
• 01:21:44the Congress
• 01:21:45tries to make a national
• 01:21:48standard.
• 01:21:49Each state is going to
• 01:21:51have to deal with it
• 01:21:51if it's not Congress, and
• 01:21:53I think they're gonna each
• 01:21:54have to
• 01:21:56play that through.
• 01:21:58And in some of these
• 01:21:58states, it's gonna
• 01:22:00be very long.
• 01:22:02Thank you. Yes, please.
• 01:22:05Hi.
• 01:22:06So I'm wondering if you
• 01:22:07can speak a little bit
• 01:22:08towards,
• 01:22:10how you handle, like, the
• 01:22:12moral
• 01:22:13distress that occurs in clinicians,
• 01:22:17when you're in this deadlock
• 01:22:19situation
• 01:22:20and you feel like you're
• 01:22:21you know,
• 01:22:23the the nursing team is
• 01:22:24the one that's at the
• 01:22:25bedside
• 01:22:27providing the care that you
• 01:22:28might feel like is just
• 01:22:30contributing to suffering.
• 01:22:32And the physician, of course,
• 01:22:34is is present, but not
• 01:22:36the one actually providing the
• 01:22:37care, and you feel like
• 01:22:39the the care is really
• 01:22:41towards the parents' wishes rather
• 01:22:44than
• 01:22:45the best interest of the
• 01:22:46child.
• 01:22:48Well, the concept of moral
• 01:22:49distress,
• 01:22:50which is incredibly important concept
• 01:22:53that you raise,
• 01:22:54is basically
• 01:22:56what clinicians
• 01:22:57and others who are caring
• 01:22:59for patients
• 01:23:00feel when they're being asked
• 01:23:02to do something
• 01:23:03they feel is ethically inappropriate,
• 01:23:05whether it's continuing treatment or
• 01:23:07stopping treatment
• 01:23:09or changing treatment or not
• 01:23:10escalating treatment.
• 01:23:13And in the last decade,
• 01:23:15maybe it's a little longer
• 01:23:16than that, we've really taken
• 01:23:18that very seriously.
• 01:23:20We're concerned that nurses and
• 01:23:22doctors who work in these
• 01:23:23situations
• 01:23:24burn out.
• 01:23:25They take that home.
• 01:23:28They, you know, kick the
• 01:23:30cat.
• 01:23:32And
• 01:23:34what we do
• 01:23:36is we make that a
• 01:23:37very
• 01:23:38real
• 01:23:39part
• 01:23:40of our interactions within our
• 01:23:41units.
• 01:23:43So the nurses,
• 01:23:45the therapy respiratory therapist, or
• 01:23:47there's a physical therapist involved,
• 01:23:49certainly the social workers,
• 01:23:51the child life workers,
• 01:23:54all interact
• 01:23:55around interdisciplinary
• 01:23:57rounds
• 01:23:59in which we talk about
• 01:24:00how people are feeling.
• 01:24:03We also whenever
• 01:24:05the clinicians
• 01:24:07see a nursing professional
• 01:24:10who's upset about the decisions,
• 01:24:12we usually hear about it,
• 01:24:14and we then intervene to
• 01:24:16talk about what's happening. And
• 01:24:17can we sit down and
• 01:24:18talk about it together?
• 01:24:21And then one of the
• 01:24:22things that
• 01:24:24I began in nineteen seventy
• 01:24:25five
• 01:24:26in our neonatal program
• 01:24:29was that the day after
• 01:24:31any death,
• 01:24:33we convene to talk about
• 01:24:34that death.
• 01:24:38Now, it may have been
• 01:24:40a very comfortable death. It
• 01:24:41may have been a totally
• 01:24:43appropriate death. It may have
• 01:24:44been a death that could
• 01:24:45have been prevented.
• 01:24:47But we sit and talk
• 01:24:48about that, not for a
• 01:24:50long time if it's not
• 01:24:52controversial,
• 01:24:53but for a little time
• 01:24:54so that people can understand
• 01:24:56that we all care
• 01:24:58about how they're feeling.
• 01:25:00And that's where the moral
• 01:25:01distress
• 01:25:02level comes down, I think.
• 01:25:06And our nursing leadership
• 01:25:08are really good
• 01:25:10at figuring out,
• 01:25:12taking the temperature,
• 01:25:15of the unit.
• 01:25:17And I think that's very
• 01:25:18important. And I'm sure you
• 01:25:19do things like that.
• 01:25:21Well, yes. And and I
• 01:25:22I would echo a conversation
• 01:25:23that you and I had
• 01:25:24just before this, which is,
• 01:25:26a shout out to my
• 01:25:27friend, Anna, and others,
• 01:25:29that that chaplains can often
• 01:25:30be very helpful in this
• 01:25:31regard as well. The chaplains
• 01:25:33and social workers who are
• 01:25:35members of the team but
• 01:25:35not clinicians on the team.
• 01:25:36There she is. That that's
• 01:25:37way to go, Anna. So
• 01:25:39we're we're blessed to have
• 01:25:40a a a very strong,
• 01:25:42a very good, chaplain for
• 01:25:43our unit. But but I
• 01:25:44I think I've seen over
• 01:25:45the years chaplains and social
• 01:25:47workers in particular can be
• 01:25:48helpful in helping all of
• 01:25:49us deal with some of
• 01:25:50that stuff.
• 01:25:53I think that the the
• 01:25:54hour is upon us. Yeah.
• 01:25:56I thank you so much,
• 01:25:57doctor Fleischman. My pleasure. And,
• 01:25:59please join me in thanking
• 01:26:00Alan Fleischman.
• 01:26:06Thank you, my friend. That
• 01:26:07was great. We'll be back
• 01:26:08in two weeks, with doctor
• 01:26:10Far Curlin from Duke to
• 01:26:12talk about,
• 01:26:13religion and the practice of
• 01:26:15medicine.
• 01:26:16Mhmm. Woah. There we go.
• 01:26:18Come back for that one,
• 01:26:19Alan.
• 01:26:22Thank you. I'm here.
• 01:26:26Thank you.