Parental Refusal of Screening Tests and Preventative Treatments : the search for a fair and coherent approach

September 24, 2021

Information

September 22, 2021

Mark R. Mercurio, MD, MA

Chief, Division of Neonatal-Perinatal Medicine

Director, Program for Biomedical Ethics

Professor of Pediatrics, Yale University School of Medicine

ID6928

To CiteDCA Citation Guide

00:00Good evening friends.
00:01This is a this is the kickoff evening
00:04ethics seminar for the program for
00:06Biomedical Ethics and the Yale Pediatric
00:08Ethics program for this academic year.
00:11Hung those of you who have looked
00:13at the schedule online know that
00:14this was not the talk that was
00:16scheduled as of a few weeks ago.
00:18We've had a couple of
00:20cancellations in in September,
00:22some COVID related,
00:23and we're doing the best we
00:24can to respond to this.
00:26What we decided to do tonight was to
00:27address a very specific problem that's come
00:29up in the newborn intensive care unit.
00:31Here at Yale, and I think other
00:33places all over the country.
00:35And and and then we were able
00:38to assemble a wonderful panel.
00:40Dr Zespri loyal doctor Naomi
00:42Laventhol and attorney Jay Sicklick.
00:44And you'll hear briefly from each of them
00:46before we open this up for conversation.
00:48So I just want to let you know
00:50that our evening ethics seminars
00:52happen about twice a month.
00:54And this the schedule can be found
00:57at biomedical ethics at yale.edu.
00:59On our website,
01:00you can always reach out to me or
01:02to Karen Kolb, our program manager,
01:04with any questions.
01:05About these things,
01:06I'm delighted you're here with us tonight,
01:07and I think it's time for me to get started.
01:10So if I can share the screen,
01:12I'll begin the presentation.
01:13I'm going to talk for about 1/2
01:15hour or so and then we're going to
01:17hear for a few minutes from each
01:19of our esteemed panelists before
01:20we open it up for conversation.
01:22We will have a hard stop at 6:30.
01:25So, as always,
01:26I apologize to whoever was had a
01:28really good thing to say or question
01:30at 6:29 'cause we may not get to.
01:32Everybody will see how the conversation goes,
01:34but I know that the.
01:35Your time is valuable,
01:36and we're not going to keep you
01:39any later than 6:30. Alright.
01:40With that in mind,
01:41let's see if I can get this going.
01:45All right, are we looking at my slides here,
01:46uh? Sam, that's good, looks great.
01:52Here we go I already I'm a.
01:55There we go, getting calls from the ICU.
01:57OK, so tonight's presentation is
01:58on parental refusal of screening
02:00tests and preventative treatments.
02:02The search for a fair and coherent
02:05approach and where this comes from
02:08is we faced problems like this for
02:10many years in the world of Pediatrics
02:13in the world of neonatology.
02:15But recently we had a child who
02:17was expected to be born overnight,
02:19and it was anticipated for reasons
02:21I don't need to get into,
02:22that the child's mother was going to
02:25decline some treatments that we felt
02:27were indicated based on our protocols
02:30for prevention of early onset sepsis,
02:34and I'll get into that a
02:35little bit more detail.
02:35So the question was, well,
02:36what do we do if she refuses?
02:38Now we've had we've dealt with
02:40parent refusal and parenting
02:42assistance for many years,
02:43and I want to talk about an overall approach.
02:45To that and then suddenly apply
02:47that approach to this specific
02:48question about the screening tests.
02:54That's interesting,
02:54let's see how we can do here.
02:59There we go. OK, nothing to disclose,
03:01except that I steal pictures from Google.
03:04So let me begin with the story of Mr.
03:05Smith. Mrs.
03:06Smith teaches at the local middle school.
03:09Everybody knows Mr.
03:10Smith, she's a smart woman.
03:11She's a nice woman and she's 28 years old,
03:14middle school teacher and one day she
03:16gets uh, brought into the emergency
03:18department by ambulance because
03:19she was in an automobile accident.
03:22And the physicians in the ambulance say,
03:26should be the physicians in the
03:27emergency department. Say. Mr.
03:28Smith, you know you're in a car accident,
03:30she said, yes, I know,
03:30and they say we have to take it
03:32to the operating room right away
03:33to take care of your injuries.
03:35She says, OK, let's go, and they say,
03:37well, also, we have to transfuse you.
03:39We have to give you some blood.
03:41And she says, absolutely not,
03:43and they say, but Mr.
03:43Smith, if we don't give you the blood,
03:45you could die.
03:45In fact, we think you probably will
03:47die if you don't get the blood.
03:48And she says, I understand that,
03:50but I would rather die than get the blood,
03:51because I think it's.
03:52Offensive to God.
03:53It's against my religion.
03:54I don't want the blood.
03:56Now, assuming for the sake
03:57of this discussion that Mrs.
03:59Smith is felt to be of sound mind.
04:02That that Mrs.
04:04Smith's refusal as I think pretty
04:06much every American physician
04:08knows Mrs Smith's refusal stands.
04:10She has a right to refuse treatment,
04:12even lifesaving treatment.
04:15And you know the old story was that
04:17if Jehovah's Witnesses didn't exist,
04:20then by witnesses probably would
04:22have invented them for the purpose
04:24of their lectures.
04:25So that may well be the point being,
04:28it's an exercise in recognizing that
04:30patient autonomy of patients right
04:32to bodily integrity is such that the
04:35patient can refuse even lifesaving treatment,
04:37and this, by the way,
04:39is why pediatric ethics is harder
04:41than adult ethics, because of course,
04:43just a few minutes later,
04:45another ambulance pulled up
04:46and the stretcher comes out.
04:48And who's on the ambulance?
04:4902 year old Boy, it's Jr.
04:50Smith and they say to Mrs.
04:52Smith look. It's Jr. Smith, your son.
04:54She says, I know he was in the car.
04:55With me and they said well, Mr.
04:57Smith. He's had internal injuries.
04:58He needs to go to the operating room
05:00right away and she says OK, go miss and Mrs.
05:03Smith.
05:03We have to transfuse him were
05:05afraid if we don't transfuse him,
05:06he's going to die.
05:07And she says absolutely not no transfusion.
05:10Now I think every pediatrician on the call,
05:13and I suspect a lot of other
05:14people on the call,
05:15also recognize that this
05:17is somehow different.
05:18Mrs.
05:18Smith could refuse her own transfusion,
05:20even if it's lifesaving,
05:22but she couldn't necessarily
05:23refuse the transfusion for her son.
05:25And it's a fascinating question
05:27as to why that should be.
05:28So we say that she can refuse
05:30based on our
05:31obligation to respect her autonomy.
05:33The patient autonomy,
05:34which literally means self rule.
05:37Now some folks refer to parental autonomy,
05:39but I would suggest it's parental
05:41autonomy is a nonsense term.
05:43Autonomy means self rule.
05:44You can't really have self
05:46rule over someone else.
05:48I don't think there's such a thing as
05:50parental autonomy so much as parental
05:52authority and the parental authority,
05:54of course, is very strong.
05:55But perhaps not as strong.
05:57Definitely not as strong as patient autonomy,
06:00as illustrated by the
06:01very extreme case of Mrs.
06:02Smith and Jr. Smith.
06:04She has a right to refuse for herself,
06:06but we would say that she doesn't
06:08have a right to refuse for her son.
06:11She is, of course,
06:12the surrogate decision maker
06:13in this situation,
06:15and whenever someone is not capable
06:16of deciding for themselves,
06:18we seek a surrogate decision
06:19maker who decides for them.
06:21This is commonly a member of the family,
06:23a spouse and adult son or daughter.
06:26In the case of adults,
06:27and in the case of children,
06:28it's usually the parents or one
06:30of the parents are both parents.
06:33And of course with all small children
06:35like Jr Smith and all the newborns
06:37that we're here to talk about tonight.
06:39These people these kids can't
06:41speak for themselves.
06:42So in medical ethics,
06:44when a surrogate decision
06:45maker has to decide,
06:47we suggest that the surrogate decision maker
06:49I brought you a little bit of New Haven
06:51music here just to add to the flair of it,
06:54we suggest that.
06:56The surge,
06:57its surrogate decision maker should decide,
06:59not because what they think is best,
07:00what they want for themselves,
07:02but by substituted judgment,
07:04which is,
07:05if I'm deciding for my father,
07:07what would dad have wanted to do in this
07:09situation based on my best understanding.
07:11Maybe even left me written instructions,
07:13but based on my best understanding,
07:14what would dad want me to do here now in the
07:17case of little kids in the case of babies,
07:19we can't use substituted judgment.
07:20They've never formed
07:21opinions on these matters.
07:23Consequently,
07:23we fall to a different standard,
07:26which is the patients.
07:27Best interest standard,
07:28which is what is commonly
07:29invoked in Pediatrics,
07:30and this specifically refers
07:32to our obligation to choose
07:33or the surrogates obligation.
07:35I should say to choose based on the
07:38patient's best interest simply to
07:40weigh the benefits of the proposed
07:42treatment against the burdens or
07:44risk of the proposed treatment,
07:46and then choose based on that whether
07:47or not it's in the patient's best
07:49interest to get the proposed treatment.
07:51And that's how we like the
07:53surrogate decision maker to decide.
07:55But in truth,
07:56that's not exactly how it works.
07:57In Pediatrics and it was now almost two
08:00decades ago that my friend Doug Diekema,
08:02well known voice in pediatric ethics,
08:05articulated something he
08:06called the harm principle,
08:07and for those of you who studied philosophy,
08:09this is something a little
08:10bit different than the harm
08:11principle in philosophy.
08:12But what what he said was
08:14that actually we don't
08:15require parents to choose what's in a
08:18child's best interest, as long as they
08:20stay above some threshold of harm.
08:23So, for example, let's say that a family
08:25lives in a town that has a really bad.
08:28Public school and a really
08:29good private school.
08:30Bye everybody's measure.
08:31The public school is bad enough for
08:32all the reasons you can decide.
08:33And the private school is really
08:35good and no one would argue that
08:37it that everyone would agree.
08:39It's in the child's best interest to
08:40go to that private school, for example.
08:42But and the parents have the money for it.
08:45Nevertheless,
08:45we don't require the parents to send
08:47their child to that private school,
08:49even if by their lights and by our lights.
08:51That's what's in the child's best interest.
08:53We say, no, you can.
08:54You can send the child to the public school.
08:56You can send the channel to another school.
08:58You could even homeschool this child.
09:00And then if the parents say,
09:01well, we're going to do is just
09:02not schooling at all.
09:03We're gonna let him watch television,
09:04and then we'd say, well, hang on now,
09:06you've fallen below some threshold to farm.
09:09So now indeed,
09:09if this child is getting no education now,
09:12the state will step in.
09:13So it's not exactly about the
09:15patients best interest, really,
09:16but it's about staying above
09:18that threshold of harm.
09:20As long as the service decide above
09:22the threshold, the farm, and of course,
09:23that's a very subjective judgment,
09:25right?
09:25But if it's a little bit like this,
09:27and the parents choose something that's
09:29not quite what's best in general.
09:30We tend to respect that.
09:32Until we get to that threshold of harm.
09:35So what's our role in all this as clinicians?
09:37Well,
09:37the first thing I would suggest
09:39is that we're moral agents was
09:40just to say that we should be able
09:42to discern right from wrong,
09:43and that's not so easy.
09:45But that's part of our job,
09:46and we're responsible for our actions.
09:49So what happens in that hospital?
09:51What happens in that nursery?
09:52What happens in that newborn
09:54ICU under our direction?
09:56And we're responsible for that.
09:58And if we say that parental authority
10:00is not quite as strong as patient.
10:03Autonomy that it does have limits.
10:06Then the rule of the clinician
10:07to a great extent is to find the
10:10limit of parental authority.
10:11Where exactly does it?
10:13Does the parents reach that
10:15threshold of harm?
10:17Where we say no,
10:17we're not just going to do what you
10:19want us to do in this situation.
10:20There's a couple of nice
10:23important landmarks on this.
10:24There was a Supreme Court
10:26case in 1947 or 1948.
10:27It wasn't actually about health care,
10:29but that comments from it and Prince V.
10:31Commonwealth of Massachusetts.
10:32Related to the fact that parents
10:34have a right to make martyrs,
10:35martyrs of themselves,
10:36but that doesn't mean they have
10:37a right to make martyrs of their
10:40children in similar circumstances
10:41until such time as a child reaches an age
10:43where he or she can decide for themselves.
10:46And that's of course related to the Jr.
10:48Smith case. If you'd like the American
10:50Academy of Pediatrics Committee on
10:52Bioethics now more than 20 years ago,
10:55had a lovely policy which has
10:56since been updated in the wording,
10:57got lost, but the AP policy stated
11:00that we believe all children.
11:03Are entitled to treatment likely
11:05to prevent significant harm,
11:07suffering or death,
11:08and I think every word in that in
11:11that in that phrase is important,
11:13likely to prevent significant harm,
11:15suffering, or death.
11:16These may be ways that particular
11:18term from the AP, especially,
11:20may be a way for us to help get
11:22a handle on what the limits of
11:24parental authority should be.
11:25Now we believe,
11:26as pediatricians and shared decision making.
11:28This is how we like to do it.
11:29We like to work with the parents
11:31and reach a decision together.
11:33That's our approach.
11:33I wanna make that clear from the outset,
11:36but there are some things that
11:37we're going to feel we have to do.
11:39Even if the parents don't want
11:41to or we shouldn't do,
11:42we will not do even if the
11:44parents will want us to do it.
11:46So we have to decide when that is.
11:47How do we decide that?
11:49And often how we decide anything
11:51in medicine is the standard of
11:53care and the standard of care can
11:54be defined a few different ways.
11:56It can just be with most reasonable
11:57physicians would do in this circumstance.
11:59With professional organizations,
12:01recommend what's commonly done
12:02in your community.
12:04There are different standards.
12:05Of care but and I don't want to get into
12:07the legal aspect of standard of care.
12:08All except to say this that with
12:12regard to standard of care.
12:14I think that our obligation to adhere
12:17to a standard of care on a scientific
12:19question and this analogy is not perfect,
12:22but I think it's helpful on a
12:24scientific question which antibiotic
12:25is should be used for which infection.
12:28I think if there's a standard of
12:30care based on large randomized
12:32trials and years of experience,
12:34that in fact our obligation to adhere to
12:37that standard of care is pretty strong.
12:39If in fact it stands on something less
12:41if it stands on maybe smaller trials,
12:43just one or two smaller trials,
12:44then our obligation maybe a bit less.
12:46If there is no actual evidence
12:48that this is best,
12:49but it makes sense physiologically,
12:51our obligations would hear
12:52that standard is less,
12:53and if it's based on what's often based
12:55on just this is kind of what we all do.
12:57This is, you know how I was taught.
12:59This is what we all do.
13:00I think our obligations would here to
13:02a standard that's just standing on
13:04that is less similarly with an ethics
13:06question with an ethical question,
13:08for example,
13:08when to overrule the parents.
13:10Refusal.
13:12I think that if our standard of care that we
13:14come about comes from a careful
13:16consideration of the data,
13:18a careful consideration of all the
13:20rights and obligations at play,
13:22and then an exchange of ideas and then
13:24a consensus among professional leaders,
13:26then I think our obligation to adhere
13:28to that standard may be significant.
13:30It's certainly higher than if it
13:31would just be all just kind of took
13:33a vote and decided this is what we're
13:35going to do without any consideration
13:36of all the different aspects,
13:38including the ethical arguments.
13:40And so I put the Yale seal up there.
13:42Looks at Vera tos.
13:42Right, which the Latin scholars know
13:45means it means because we say so.
13:47That's not actually what it means,
13:49but sometimes that's what the
13:50standard care comes down to.
13:52Why is that? The standard of care?
13:53Well, we all got in the room,
13:54and we decided this is what
13:55we're going to do.
13:56So that's the standard of care.
13:58I don't think really,
13:59that's the best way for us to
14:02answer an ethical question.
14:03So how should we answer it?
14:04This is my suggestion.
14:06This is something called the IPO scale,
14:08and for any treatment or or test or
14:11screening tests we want to determine
14:14if it is ethically impermissible,
14:16permissible or obligatory.
14:18Any treatment can be defined,
14:20described as one of those three things,
14:23and within permissible.
14:24There are some things that are inadvisable.
14:26We don't really recommend it,
14:28but it's not to the point where it's
14:30actually ethically impermissible to do it.
14:31There are some things that
14:33are ethically advisable.
14:34Well,
14:34we think this is really what you should do,
14:36but it hasn't really reached the threshold.
14:37Those red vertical lines hasn't
14:39really reached the threshold where
14:41we think is ethically obligatory.
14:43I mean a classic example of his visible
14:45right now is childhood vaccinations,
14:47right we?
14:48I think any pediatrician worth
14:50his or her salt strongly advises
14:52recommends those vaccinations,
14:54but we don't take away custody
14:57and forced vaccinations.
14:59If the parents refused,
15:00there's issues later on with school etc.
15:02But this is something we
15:04feel as strongly advisable.
15:05But not necessarily obligatory.
15:07And like fashion, there are some things
15:09that we think it's not really advisable,
15:10but if the parents really want to do it,
15:12OK, you know we.
15:13We can do that.
15:15So how do we do this?
15:17Well,
15:17if it's ethically impermissible,
15:18we shouldn't do it and we shouldn't offer
15:20to do it if it's ethically permissible.
15:22We should offer,
15:23even if the parents aren't
15:24smart enough to ask,
15:25or savvy enough is a better
15:27word savvy enough to ask.
15:28And if it's ethically obligatory,
15:30we the clinicians should do it
15:31now we should insist if necessary,
15:33and rarely it comes to this,
15:35but we may get legal help,
15:37and we may even have to go to court
15:38in the rarest of circumstances when I
15:39think of the times I've done this as
15:41maybe two or three times in my career.
15:43It in fact was about transfusion.
15:46So that remains an option,
15:48but this is basically, uh,
15:50this is what we do, so we could stop now.
15:52But we have some more time.
15:54So the real question,
15:55the real ethical work here is how do we
15:57locate a given treatment on that line?
15:59If there's a treatment in question,
16:02how do we decide if it's
16:03ethically impermissible?
16:04We're not doing it.
16:05If it's ethically permissible,
16:07we're willing to do it,
16:08or if it's ethically obligatory,
16:09we insist ethically that whole range of
16:12ethical permissible is something that's
16:13also been referred to as the zone.
16:16Of parental discretion.
16:16That's where we give parents a lot
16:19of latitude in terms of what's done.
16:21I think we located on the line
16:22based on the prognosis with and
16:24without the proposed treatment.
16:25We weigh the benefits and burdens
16:26of the treatment in question or
16:28the screening testing question,
16:29and we consider the likelihood
16:31of those possible outcomes.
16:32So examples might be antibiotics
16:34in a ventilator for a full term
16:36baby with bacterial pneumonia.
16:38I think mostly on it.
16:39Ologists, myself included,
16:41would say that this is obligatory.
16:43This is ethically obligatory,
16:45because frankly this there's a.
16:46There's a significant chance this channel
16:48could die without those antibiotics,
16:50and there's a.
16:51Tremendous chance the child going to
16:52survive and do fine with those antibiotics,
16:54and so those differences in prognosis.
16:56How about Jenna Meissen as
16:59treatment for cytomegalovirus?
17:00Now for those in the room
17:02who aren't clinical US,
17:03gentamicin doesn't work
17:05against cytomegalovirus.
17:06It will not help,
17:07and in fact it carries some toxicity,
17:10in which case I would say that
17:11gentamicin is treatment for settle.
17:12Megalo virus is ethically impermissible.
17:15There's clear risks and burdens to the child,
17:17and there's no perceived benefits
17:18of some parents that I read
17:20an article about gentamicin.
17:21I want you to give it to my child.
17:22With CMV I think mostly only
17:24challenges would see that as ethically
17:26impermissible even if they didn't
17:27use that language and say no.
17:29Well,
17:29one thing to remember about this line
17:31to recognize is that location on the
17:34line for any therapy is not static.
17:36It moves based on changing the prognosis.
17:38So think about a few examples for
17:40transposition of the great vessels for
17:42transposition of the great arteries.
17:43There is a surgical procedure
17:45called arterial switch.
17:46Very high effectiveness,
17:47very effective,
17:48and at this point the outcomes mean
17:50more than 90% of those kids are going
17:51to survive and do well and without it.
17:53These kids could could die.
17:55Consequently,
17:55we would consider that ethically obligatory,
17:58but I remember a time when that procedure.
18:00Brand new and when it first came out,
18:03if you will.
18:04It wasn't immediately considered
18:05ethically obligatory as we
18:06gathered more data and saw with
18:08how good the outcomes were.
18:09Eventually it replaced the previous
18:11procedure that was more commonly used,
18:14so it moved from left to right
18:16from permissible to obligatory
18:18as more data became available.
18:21Right now for hypoplastic left
18:23Heart syndrome,
18:23there's a stage surgical repair done,
18:26and this is a disease where the child will
18:28die without this stage surgical repair,
18:30unless there's a rare transplant done.
18:33Come and so some folks say that
18:35the outcome is is poor enough still
18:37that the parents should have the
18:39option of comfort measures only.
18:41We don't have to do the surgery.
18:43It's the stage sorted.
18:44It's a long, difficult treatment
18:45and many children don't survive it.
18:48Others would say that the outcomes
18:49have gotten better and better,
18:51so it's crossed that line like
18:52the arterial switch procedure.
18:54It's crossed that red line between
18:56permissible and obligatory.
18:57It's gone from advisable to obligatory.
19:00And therein lies a significant dispute.
19:03Right now,
19:03and the only tells you and you'll
19:04hear different things from
19:06different cardiologists,
19:06neonatologists and CT surgeons,
19:08whether parents should still have the
19:10option of comfort measures only if we
19:12think that surgical repair is obligatory.
19:14We would then not offer
19:16them comfort measures only.
19:17Apnea prematurity is another interesting
19:19example where years ago it was treated
19:21with supplemental oxygen and it worked there.
19:23Apnea of prematurity where
19:25they stopped breathing,
19:26actually decreases.
19:26If you could put him in 100% oxygen so that
19:29was an ethically permissible treatment.
19:31Eventually more data became
19:33available and it became through
19:34that this run the risk of causing
19:36blindness in premature babies.
19:38Consequently,
19:38this moved from permissible to
19:40impermissible as the burdens and
19:42risks of the child increased,
19:44or I should say,
19:45our awareness of them increased.
19:47And of course,
19:48with regard to extreme prematurity.
19:50Here again,
19:50we've got a we have a case where,
19:52at what gestational age at what
19:54prognosis do we resuscitate and
19:56we've all seen that move those of
19:57us who've been at this for a while,
19:59that as the outcomes get better and
20:01better for a given gestational age.
20:04Resuscitation at that just inhalation
20:06gestational age moves left to right
20:09on this scale, and for example,
20:11when I was training,
20:12I think most people would say that a
20:14child born at 25 weeks or many would,
20:16that that's something that we want to do.
20:17But if the parents say absolutely not.
20:18He won't do it.
20:19I think a lot on the Internet.
20:20Ologist would said no.
20:22At this point on the outcomes are so
20:24good that I think that, for example,
20:26the AAP says and the and the.
20:29And and the British organization says
20:31in the Canadian Associ Academy of
20:33Pediatrics and others have said no.
20:35At that point, it's obligatory now,
20:37because the prognosis has moved with time.
20:40So one important aspect of this is we
20:42can't make a decision about any treatment.
20:43And then five years from now and say,
20:44well, we already talked about that.
20:46We decided it may have moved on the line.
20:48We have to take another look,
20:49see what other data have become apparent.
20:52Now,
20:52it's not just prognosis that's
20:54going to determine that.
20:55It's also feasibility, right?
20:56Medical and economic.
20:58Interestingly enough,
20:59if something can't be done that it can't
21:01become ethically obligatory,
21:03there's an adage ought implies can,
21:05which applies.
21:06We can't say you're obligated to do
21:08something if you absolutely can't do it,
21:09either because you don't have the medical
21:11resources or the economic resources.
21:13So what's ethically obligatory in
21:15some countries may be considered
21:17a not ethically obligatory,
21:19and others depending on the availability
21:21of resources, including personnel and.
21:23Facilities etc.
21:24Prognosis and feasibility.
21:26And the third thing that locates things
21:29on that line of the relevant rights.
21:31So let's think about this.
21:32The parents have a right to decide.
21:35We recognize that I think
21:36we should recognize that.
21:37Hence our goal of shared decision
21:39making our acknowledgment of parental
21:41authority needs to be very respectful.
21:44Parents have a right to decide almost
21:46always what should happen to their child.
21:48Our role as clinicians is to find
21:50that threshold where we should
21:52seek to overrule their decision.
21:54So what right may Trump the
21:56parents right to decide?
21:57I think two come to mind for me and there
21:59may be others that you would consider.
22:00One is the child's right to treatment if
22:02the parents are refusing a treatment that
22:04is likely to prevent significant harm,
22:06suffering or death that I think that in
22:08fact as a clinician I would seek to overrule.
22:10In that case our rights based
22:12analysis tells me this is something
22:14that should be ethically obligatory.
22:15The other thing is something
22:16called the child's right to mercy.
22:18Which you know we wrote about from here,
22:20but in fact this is not a new concept,
22:21just new wording for it.
22:22Perhaps in the idea that the child
22:24should not be made to undergo
22:26treatment that is painful or
22:28difficult or invasive that offers
22:29no chance of benefit to that child.
22:32No significant benefit.
22:33So sometimes,
22:34as we've seen in the world
22:36of newborn intensive care,
22:37parents ask us to do things that we
22:39think are just going to hurt the child
22:41and offer no chance to help the child.
22:43I would say in that setting some
22:45things become ethically obligatory
22:47based upon the child.
22:48Right to mercy,
22:49and sometimes clinicians should say no.
22:53And there may be other rights
22:55involved here too, right?
22:55The families best interest and
22:57the other members of the family
22:58are affected by decisions we make
23:00other members of society society
23:01as a whole because of how we
23:03distribute our limited resources,
23:05distributive justice,
23:05of course,
23:06refers to a fair allocation of limited
23:08resources and the healthcare dollar is
23:10a limited resource that we don't really
23:12live that way often in this country,
23:14but more and more we're going to need to.
23:17Other rights may come into play as well.
23:18I'm not sure for this discussion
23:20about parents refusing a screening
23:22test that it's necessarily.
23:24On relevant to the discussion,
23:25but something to be thought of.
23:26This is all part of a rights
23:29based analysis which is going
23:31to help locate any treatment or
23:34screening test on that IPO scale.
23:36Prognosis, feasibility and relevant rights.
23:41And something else,
23:42and so get to something else.
23:44I want to tell you a brief story.
23:46If I could please some years back when
23:50extra corporeal membrane oxygenation
23:52essentially heart lung bypass,
23:55became a treatment more often used
23:57in newborns who had a problem
23:59called pulmonary hypertension.
24:01Basically we could not get
24:02enough auction their blood,
24:03even if you used a ventilator
24:05at 100% auction,
24:06we still were not getting enough
24:08oxygen in their blood and constantly
24:09they risk death or brain damage
24:10or other end organ damage.
24:12If they survive and so these kids would
24:15be put on bypass if you will on ECMO.
24:18One thing I recall for when ECMO
24:21first became available for newborns
24:22it was more and more commonly used
24:24is that it was considered that we
24:26wouldn't do it in cases of trisomy 21,
24:29also known as Down syndrome.
24:31They weren't considered candidates,
24:32and you'll hear that phrase
24:34a lot in medicine,
24:35and we have to be careful about the
24:37circular arguments are not candidates
24:38'cause it's not indicated it's not
24:40indicated because they're not candidates,
24:41and the candidates 'cause
24:42it's not the standard of care,
24:44and it's not the standard of care
24:45because they're not candidates
24:46in and around and around it goes.
24:48The fact of the matter is in the.
24:49Early days of ECMO kids with trisomy 21.
24:52It was I saw were were rarely put on ECMO,
24:55even if they otherwise met.
24:56The indications in the early
24:58part of the 21st century.
25:00In the first years it became,
25:02I thought I noticed and I spoke to my
25:05colleagues here on the ECMO team that
25:07there was more and more willingness
25:08to now put these kids on ECMO.
25:10So we did a survey of ECMO centers
25:12all over the country and overseas.
25:15Rachel Chapman, you see,
25:15is the first author of our service.
25:17She was the head of our ecmel
25:19program here then.
25:20And we asked,
25:21assuming the patient meets the
25:23respiratory criteria and there
25:24are no other contraindications.
25:26Would you offer ECMO in the presence of
25:29trisomy 21 and the choices were never?
25:32Rarely, sometimes, usually or always.
25:34And to say we would offer it as
25:36opposed to insist or refuse,
25:37suggests that we see it as
25:40ethically permissible.
25:41Now again,
25:41I think if we've done this much earlier,
25:44we would have seen that that
25:45relatively few centers do this.
25:47That was my experience,
25:48but when we did this in 2008 and 2009,
25:51we saw that most.
25:53At most centers usually are always.
25:56Offer FMO in children with trisomy 21.
26:00And that fascinated me.
26:01Why did that change?
26:02Why did it seem to move on that line?
26:04And no one spoke in terms of
26:05that scale in those days?
26:06But why did our approach to that
26:08change to the prognosis change?
26:10Now?
26:11It really didn't.
26:12That were the things about trisomy
26:1421 that changed.
26:15Not really,
26:15so we have to ask ourselves what
26:17changed and if it wasn't the prognosis.
26:20Maybe it had to do with
26:21our attitudes or values
26:22about the procedure,
26:23perhaps was it seen as something
26:26that was really experimental or
26:28extremely novel or extraordinary care?
26:30A term that many ethicists,
26:32myself included, try very hard to avoid,
26:35but that our attitude about ECMO
26:37changed as I become more commonly used.
26:39Or wasn't our attitudes about the patients?
26:41Do we see newborns as perhaps having
26:43fewer rights or lesser rights than
26:46older children or adults or newborns?
26:48Specifically with trisomy 21?
26:49Was it our attitudes or values
26:52about people with disabilities?
26:54We all know that all children with trisomy 21
26:56are going to have some cognitive disability.
26:58Is that why it was felt they shouldn't
27:01be candidates in the early days of ECMO,
27:03there was no evidence to show that
27:04they were less likely to survive ECMO.
27:06All the information we had was just
27:08as likely to help them as a child
27:11who was otherwise normal.
27:12Our attitudes about disability
27:14was our attitude,
27:15perhaps about the parental
27:16rights at his side.
27:18I don't know,
27:19but I think our attitudes
27:20and values influence where we
27:22locate things on that line,
27:24and that should come with a caution.
27:26And it should come with a caution because
27:28sometimes our attitudes and values are
27:30also really our biases or prejudices,
27:32and some of them are enlightened
27:34and some of them are not.
27:35So we have to be.
27:36We have to really stop and ask
27:38ourselves if I don't consider this
27:40person a candidate for this treatment,
27:42but.
27:42This other person is what's the
27:44difference and is it a morally relevant
27:46difference between these two people?
27:48And I think in general,
27:48if we're trying to find the
27:51difference largely it should
27:52be a difference in prognosis.
27:55OK, prognosis,
27:56feasibility,
27:56relevant rights and also with a caution.
27:59Our attitudes and values will locate
28:01where a proposed treatment or
28:04screening test falls on that scale.
28:06How might we get it wrong?
28:07We might get it wrong when we're
28:09not honest with ourselves.
28:10This is, of course, William Shakespeare,
28:12who in one of his plays when the old
28:14man sends his son out into the world.
28:15He says this above all else
28:17to thine own self be true.
28:18The one Shakespeare play or read in
28:20high school to the known self be true.
28:22Then it must follow as the night.
28:24Today though cannot be false
28:25to any other man.
28:26So we've got to be honest about
28:28what the data show and what
28:29the limits of the data are.
28:31First, we're honest with ourselves.
28:32Do we really know what would
28:34happen if we gave this treatment
28:35if we didn't give this treatment,
28:37do we really know the likelihood
28:39of catastrophe?
28:39If we don't do this,
28:41we gotta be honest with ourselves about this.
28:43We also have to think about a
28:45risk for injustice that could come
28:47from the savviness requirement and
28:48by the sadness requirement.
28:50What I mean is that if we say well,
28:52I'm willing to offer something
28:53to someone if they ask for it,
28:55but I would never offered to
28:57them if they don't ask for it.
28:59That means that the people who are
29:01savvy enough to know as an option,
29:02perhaps they have a relative
29:04in the health care business.
29:05Perhaps they're very skilled
29:07with the Internet.
29:08They're given more options than people
29:09who don't have friends or family in
29:11healthcare and aren't good with the Internet,
29:13and that seems an injustice to me.
29:15To treat these people differently,
29:16to give them different options
29:17based on their degree of savviness.
29:20This is a couple of ways we could
29:22get this ethical reasoning wrong.
29:24But how we do this and how we
29:26create these sorts of things is
29:27that we need to function as a
29:29team and think ahead when we're
29:30deciding about a specific treatment,
29:31and so I would say we need
29:33to understand the data,
29:35including all the failures of the data,
29:37and we've done this in our division
29:38on a couple different issues and it
29:40takes a long time and it's hard work.
29:41We need to get together and
29:42we don't just say OK.
29:43So what do we want to do
29:45about children at 22 weeks?
29:46What do we want to do about trisomy 13?
29:47Let me see you show a hands.
29:49OK, this is what we're going to do now.
29:51I don't think that's adequate.
29:52I think we need to really
29:53work through the data.
29:54Strengths and weaknesses we need to
29:56consider the relevant rights and
29:58obligations and the relevant laws
30:00we need to make a fair and feasible
30:02plan prior to the crisis or conflict.
30:04We don't know.
30:04Wait till it's midnight and a
30:06mother is refusing something.
30:07We need to make a plan ahead of time.
30:09And we need to recognize the need
30:12for consensus, which is to say,
30:14we can't say that.
30:15Well, you know on Tuesday night,
30:17Steve would say he has to get it.
30:19But on Wednesday night,
30:20Mark would say the kid doesn't
30:21have to get it.
30:22And then on Thursday morning,
30:23uh,
30:23now Naomi comes in and she says
30:25now the kid should get it.
30:27Should we can't function like that as a
30:29team if we're all sharing the same patients?
30:31We've got to get ourselves on the
30:33same page and we've got to agree
30:34that we're going to work together
30:35to come to some consensus about
30:36what our approach is going to be,
30:38whether it's vitamin K administration.
30:40Or resuscitation at 22 weeks
30:42or whatever the question is.
30:45We also have to see that there's
30:46occasionally a need to deviate
30:47from the plan once we make a plan.
30:49Sometimes we may want to deviate from it,
30:51but again, there's a risk for injustice.
30:54Here's what we're going to do,
30:55but you know what?
30:56In this case,
30:56I'm going to give these parents
30:58more latitude. Well, why is that?
30:59Is it because they look more like
31:01my family than someone else is?
31:02Family?
31:03Is it because these parents seem
31:04to me to be very kind,
31:05whereas other parents were rude?
31:07So that doesn't mean that the parents who I
31:09perceive as rude should have fewer options
31:11so we can call an audible if you will.
31:13But we have to be careful.
31:15Because there's a real
31:16risk for injustice there.
31:18Well, this is the fundamental
31:19question I want to talk about today.
31:21This is where this is where we're going.
31:23What about newborn screening?
31:24We screen these children for
31:26rare but potentially serious
31:29potentially lethal disorders.
31:30What about vitamin K administration?
31:32We give vitamin K to every baby to prevent
31:35hemorrhagic disease of the newborn.
31:37Sometimes parents refuse it.
31:39Jasprit may comment on that.
31:41Others may comment on it.
31:43What about a sepsis evaluation
31:44for risk factors?
31:45This is really interesting because.
31:48This is what provoked this
31:49conversation to begin with,
31:50where we have a child who,
31:52by our calculations,
31:53the risk of early onset sepsis is high
31:56enough that we want to draw blood culture.
31:58Well,
31:58what does it have to be?
31:59It has to be better by our protocol and
32:01commonly accepted protocols in the country.
32:04If the chance of sepsis is greater than 1000,
32:06we're going to draw blood culture.
32:08If it's greater than three and
32:091000 and someone correct me if
32:11I've got these numbers wrong,
32:12we're going to give antibiotics.
32:13We get the blood culture and
32:14give antibiotics for a couple
32:16days and watch this kid closely.
32:17Now it's an interesting question.
32:18If there's a three and 1000 chance,
32:20what if the parents say no?
32:21I don't want those antibiotics for my child,
32:23and we say, well,
32:25this is serious business right there as
32:27early onset sepsis can kill a child.
32:28We've seen it.
32:30We know this.
32:31This is a very high degree
32:32of harm if it occurs,
32:34but there's a low risk of the adverse event,
32:37and that's what makes it tricky.
32:38When we were questioning people about the
32:41antibiotics, I mean the thing we got.
32:42Well,
32:43you're trying to prevent a very serious,
32:44potentially fatal illness.
32:45Yeah,
32:46but at some point at some point does
32:48the low risk of that adverse event
32:50way into our decision about whether
32:53it should be advisable or obligatory.
32:55We're trying to find that
32:56now highlighted in yellow,
32:57that threshold between advisable
32:59and obligatory.
33:00Certainly we all advise vitamin K.
33:02Prophylaxis for hemorrhagic
33:03disease of the newborn.
33:04I mean,
33:05fewer than 1% of those kids are
33:07going to get hemorrhagic disease of
33:08the newborn if they don't get it,
33:10but we feel that that risk,
33:11you know, should we.
33:13Should it be obligatory,
33:14we've got to try and define what that
33:17threshold should be for these things
33:19and for any other tests we want to do.
33:21So that's the simple man.
33:24A simple question,
33:24and here's what I think I think,
33:26as we as we move across that line
33:28from advisable to obligatory,
33:30that's going to be determined by the risk
33:32or burden of the screen or treatment.
33:35OK,
33:35if it's a newborn screen or a sepsis screen,
33:38or giving vitamin K.
33:39If there's a risk or burden to the treatment,
33:42the more the risk gets, the less likely
33:44it is that it's going to be obligatory.
33:46The severity of harm if we
33:48don't do it as that goes up,
33:50that's going to move things to the right.
33:52OK, and of course,
33:53as the severity of harm gets work,
33:54it goes to the right and X&Y.
33:56I mean, you could just say
33:58if we looked at this simply,
34:00we'd say well, how obligatory is it?
34:02Well, that comes with an answer of y -- X.
34:05If this is really bad harm that could come,
34:07then it becomes more obligatory if
34:10the risk or burden of the screen
34:12or treatment is really high.
34:13It becomes less obligatory,
34:14but importantly in the thing that
34:17gets lost in these conversations.
34:19Is there something else,
34:20and that's the likelihood of
34:22harm if we don't do it?
34:23Consider if I have a screening test for a
34:26disorder and if I find it I can prevent it,
34:29and if I told you that if I
34:30could prevent it if I find it.
34:32If I do the screen test one out of 10 kids,
34:34I'm going to find a fatal problem and
34:36I'm going to be able to prevent it.
34:37I think you would say to me,
34:39wow, you should have to do.
34:40Even if parents refuse it.
34:41One of the ten chance you could
34:43save this kid's life by doing this
34:45screen you should do it one at a 10.
34:47OK,
34:47so now if I say as a one out of
34:4910 million chance that I could
34:50save this child by doing this now,
34:52does that affect?
34:53I think that affects where we
34:55locate this on the line.
34:57We're going to try and find some kind
34:59of a threshold now as a case in point,
35:01we went through this analysis here.
35:03A few of us here not long ago and we
35:05published it just earlier this year.
35:07The Journal of Pediatrics.
35:08Babies who are at risk for hypoglycemia,
35:12low blood sugar,
35:12and they can be at risk because the
35:14mother had gestational diabetes or
35:16because the kids are very small or
35:18very large, or some other things.
35:19Kids who are at risk but are asymptomatic,
35:22they look beautiful,
35:22but we know they're at higher
35:24risk for hypoglycemia.
35:25We advise we advise a specific screening.
35:28We check their blood sugar hourly
35:30or periodically as we go along
35:31we monitor their blood sugar.
35:33We poke their heal a little bit,
35:34we sample some blood and we
35:36check their blood sugar.
35:37The question was raised now last year.
35:39Well,
35:40what happens when parents refuse
35:42that screen and so we did?
35:43An analysis.
35:44Let's really take a look at the data.
35:45How likely is it that we're going
35:47to prevent harm?
35:48We all know that severe hypoglycemia
35:50can lead to brain damage,
35:52seizures, and brain damage.
35:53That's serious business.
35:54Well,
35:54how likely is it going to be if we
35:56have an asymptomatic newborn that
35:57we're going to prevent that you know?
35:59How good is our screen?
36:01How good is our treatment?
36:02We went through all these data and
36:04essentially what we determined in the
36:06analysis and it's published in JPS.
36:07If you'd like to read it was you know what?
36:10Then the screening for hypoglycemia.
36:12This reaches what we
36:14consider to be advisable.
36:15Yeah, we think it's a good idea.
36:17We recommend it.
36:17This is our standard care in our unit,
36:20and I think pretty much throughout the
36:21country for kids at risk for hypoglycemia.
36:23But in fact,
36:24if you really look at the data
36:26and consider the relevant rights,
36:27which is to say at some point the
36:29parents have a right to control
36:30what happens to their child.
36:31In fact,
36:32there's not enough data to say that
36:34this should be able to get or so
36:36in the case of neonatal screening
36:37for neonatal hypoglycemia in an
36:39asymptomatic baby, I want to emphasize.
36:41This isn't a child who's jittery or or
36:43is having seizures or something like that.
36:45This account is perfectly looks,
36:47looks perfect.
36:47We would say that yes, it's advisable,
36:50but not obligatory.
36:52That's one case in point.
36:53Now you could look at the same data
36:54and come to a different conclusion.
36:56Of course,
36:56it's invariably has to be subjective
36:58'cause we have to figure out what
37:01that threshold is going to be or
37:03advisable and obligatory cross.
37:04And I think that should be
37:06determined by the risk or burden
37:08of the Screener treatment X.
37:09The severity of harm if not done, why?
37:12And the likelihood of harm if not done so.
37:16It's not just how bad is
37:17hemorrhagic disease of the newborn,
37:19but how likely is it if we don't
37:21give vitamin K are or how not just a
37:23question of how bad is early onset sepsis?
37:25But how likely is it if we
37:26don't give the blood culture?
37:27If we don't do the blood culture and
37:29give the antibiotics and a final point
37:31about this is the importance of coherence.
37:35And as we think about this,
37:36rather than think about each
37:38specific screen independently,
37:40I think we should start by having
37:41a more global conversation.
37:43And and what I mean by coherence is if
37:45we say if we have one thing that's got
37:48a 100 chance of preventing disaster and
37:50we and we allow the parents to opt out.
37:53But we have something else
37:55that's got a one in 1000%,
37:56one in a thousand chance
37:58of preventing disaster.
37:59And we don't allow parents
38:01to opt out of that.
38:02That does not seem coherent.
38:04I think we've got to kind of
38:05get a handle roughly on where
38:07that threshold should be,
38:08and then apply that thinking
38:10to each screen in turn.
38:12Because it seems unfair to
38:14say to one parent listen,
38:15we have to do this because there's
38:17a one in 1000 chance it's going to
38:18help your kid and to say to the
38:20parent in the next room while we
38:21recommend we do this 'cause there's
38:23a 100% chance it could save your kid,
38:25but we're not going to do it if you insist,
38:26if you refuse, will respect that refusal.
38:29We need coherence in our approach.
38:32So what do you think?
38:33What other factors have I not considered?
38:36Who should participate in the
38:37discussion in the decision tonight?
38:39I want all of you to participate in
38:41the discussion because this is a real
38:42problem that we're trying to sort
38:43through the the clinical leadership of
38:45our NICU here at Yale and Casey guys
38:47on Steve Peterich are the ones who are
38:49who have instigated this conversation
38:51largely and and we want to be able
38:52to at some point give some guidance
38:55to the whole neonatology division.
38:57And what else?
38:58What else should go into this?
39:00UM, who should be making this decision,
39:02and what else should we be thinking about?
39:05Aside from just thinking that we
39:07all wish we were on Block Island,
39:09I guess that a final point I would
39:12make is that we are moral agents.
39:16We are responsible for what happens
39:19in our hospital.
39:20And sometimes we have to insist.
39:23And sometimes we have to refuse,
39:25which is to say,
39:26sometimes we have to seek to
39:27overrule what the parents want.
39:29And I think that sometimes
39:30that's appropriate.
39:31But it needs to be based on something
39:33more than because we say so.
39:35We need to do better than that.
39:37So with that I want to introduce
39:40this wonderful panel.
39:40We've managed to assemble here,
39:43so I'm going to stop sharing this.
39:46And introduce you to my friend
39:48and colleague Dr Jaspreet loyal a
39:51jaspreet is a pediatric hospital is an
39:53associate professor in the Department
39:55of Pediatrics at Yale School of Medicine.
39:57She has served in the past as medical
39:59director for our well newborn unit
40:00here at the L Children's Hospital and
40:02for the past four years she's been the
40:04medical director of the inpatient unit.
40:07She's currently the chief of
40:09our Hospital Medicine division.
40:10She's a graduate of Saint
40:13Catherine University in Minnesota.
40:14Received a degree in epidemiology
40:16at Stanford.
40:17She graduated the Medical College of
40:19Wisconsin and did her residency at
40:21Weill Cornell, New York Presbyterian.
40:23Jasprit knows a thing or two about
40:26many things to do with babies,
40:28and so I really appreciate her
40:29thoughts on what I just said
40:31and on the problem at hand.
40:32So with that jaspreet, I turn it over to you.
40:38Thanks, Mark, thank you so much
40:40for the invitation and it's very
40:43difficult to follow you and I.
40:46I really appreciate you setting up
40:48the framework I I think what I have to
40:51offer here is a different perspective.
40:53As someone who's not an expert in bioethics,
40:57nor is a neonatologist my I've been.
41:00I've been at Yale for 10 years,
41:02and my first five years I was
41:06the medical director of the.
41:07Newborn nursery and which is now
41:10in the very capable hands of my.
41:12My UM. Colleague Dr Arizona.
41:17And what I wanted to share with you was
41:20my my personal journey through dealing
41:23with some of these refusal issues
41:26that in part began with my role here
41:29as the the nursery Medical director.
41:33So as Mark said,
41:35I did my training.
41:37In Pediatrics in New York,
41:39and that will become relevant momentarily,
41:42and I first encountered vitamin K
41:45refusal in the newborn nursery at Yale.
41:48And I had many mentors in the
41:52section of general Pediatrics.
41:55A couple of them were sort of instrumental
41:59in pushing me to investigate this.
42:02Observation one was Brian Forsythe,
42:05who told me to be curious and investigate
42:09what bothered me and eat Colson who
42:13told me that the nursery is my lab.
42:16So that's where I started and you know,
42:19I know that there's there's a number of
42:21folks in the audience who are neonatologists,
42:24but the bulk of newborns are in the well,
42:26newborn nursery and across our health system.
42:31In four of our main sites.
42:33In a year, there's approximately
42:3610,000 newborns that are delivered.
42:39So when I started it at in my role at Yale,
42:42I saw Vitamin K refusal here and there
42:44and it was extremely stressful for
42:47me as well as the nurses and took a
42:50lot of time sometimes over an hour
42:52and I felt inadequately prepared.
42:55Part of this,
42:56and I'm hoping that we'll talk
42:57about this with the panelists,
42:59is that in the state of New York,
43:01there is a state mandate that
43:03you cannot refuse vitamin K,
43:05and that is not the case in Connecticut.
43:07And maybe that's why I saw more of it here.
43:10So my first call of action was to
43:13determine how big of a problem is this
43:16and so just like any other researcher.
43:19Did a chart review of our newborns
43:21to determine the extent of refusals,
43:23because everyone felt like a lot.
43:26But when you actually looked at the
43:28data at Yale of all of our deliveries
43:32about point path .5% of parents
43:36refused intramuscular vitamin K.
43:39So I thought this is a problem just
43:41at Yale or it's just more pervasive.
43:43And again,
43:44with the tremendous mentor ship
43:46in the Department of Gen.
43:47Peeves and some nudging from my
43:49friend out of Fenwick by out did the
43:51same study in a network of newborn
43:53nurseries through the Academic
43:56Pediatric Association and found
43:58that their refusal rate was not that
44:00different than what I found at Yale.
44:02It was around
44:04.6%, but in some places as high as 2%.
44:08So. Again, going back to Ventureship,
44:11which is so critical in in everything
44:14that we do, EVE suggested that
44:17I do some qualitative research,
44:19so one of my first one of my first studies.
44:23In qualitative research,
44:24was in the newborn nursery where I
44:27interviewed mothers of infants who did
44:30not get vitamin K and to ask them why.
44:32And I partnered with a colleague at UC
44:35Davis who did the same in California.
44:37Together we found four main themes when
44:39speaking with these families first.
44:43The this idea of the risk benefit ratio,
44:46where the perceived risk to their
44:48newborn in many cases was greater
44:51than the benefit and the risk from
44:53preservatives from the dose being
44:55high to some parents thinking that
44:58pain from the injection would cause
45:00their child to develop depression
45:02or anxiety as young adults.
45:04The second was this idea of having a
45:08naturalistic approach and if the mother
45:10has eight more alfalfa then the baby
45:13would get vitamin K through the breast milk.
45:17Uhm, or taking oral vitamin K,
45:20which is something that's
45:21done in Europe all the time.
45:23So what was what made the standard of
45:25care different in the United States?
45:27Where in Europe oral Vitamin K was
45:30was part of the standard of care,
45:32and babies did fine.
45:35The third was this idea of placement
45:37of trust and mistrust,
45:39where there was mistrust of
45:41medical establishments.
45:42Pharmaceutical companies,
45:43trust of self and like minded
45:46people and the complexity here.
45:49Sometimes those like minded
45:51people were pediatricians who also
45:54felt that the parents autonomy,
45:56in this case should be respected.
45:58And then the last one was
46:01being informed by experiences.
46:02So are our process here.
46:05Yeah,
46:05when I when intramuscular vitamin
46:07K is is administered,
46:09is no one really asks the parent,
46:11it's more of an opt out if you if you
46:13come in with a birth plan and you know
46:15that you don't want it for your child,
46:17you'll tell somebody.
46:18But otherwise the baby is born and
46:20they get their eyes and thighs,
46:22which is the.
46:24Iris Formation ointment in
46:25the eye and the injection.
46:27Hepatitis B is a different conversation
46:30where verbal consent is obtained and is
46:33a little bit more of more of a process.
46:36The next thing I did was ask clinicians,
46:37so would you give oral vitamin K knowing
46:41that intramuscular is work better
46:44and so we surveyed our own hospital
46:46is here and and neonatologist as well
46:49as at a couple of other institutions.
46:51And we found that over 50% felt
46:55comfortable prescribing oral vitamin K.
46:58The pediatric community is divided.
47:01Some folks feel that intramuscular
47:03vitamin K or nothing and others feel
47:06that something is better than nothing.
47:09And across all this is maintaining the
47:13therapeutic relationship with the family.
47:15I was also interested in so I'm
47:17meeting families for the first
47:18time as a pediatric hospitalist,
47:20but who gets who meets with
47:22them way before I
47:23do the obstetrician, gynecologist,
47:25midwives, and so there is an association
47:29between going to a midwife and
47:32increased refusal rates of standard
47:35of common newborn interventions.
47:37So my colleagues in Iowa and Michigan,
47:41and I interviewed midwives in
47:43our States and ask them what he?
47:45What do you think? How do you?
47:47How do you handle parents
47:49who don't want to come?
47:51Do the routine standard of care and so
47:54it was really interesting and what we
47:56found and this is sitting in the with
47:59the Journal of Maternal Child Health.
48:01For six months we'll see what happens,
48:03but they, the midwives,
48:04told us that for them supporting
48:07parent decision making authority was.
48:10Prime.
48:12They felt that their low intervention
48:14philosophy attracted certain parents,
48:16so it wasn't that the midwives
48:18were promoting non adherence.
48:19They were attracting parents
48:21who wanted to do less.
48:23Another important theme was was
48:25lack of positive relationships
48:26between midwives and pediatricians,
48:28where the midwives felt that
48:30pediatricians were all or nothing.
48:31If you don't want to vaccinate your child,
48:33don't come to us.
48:34We're not going to meet you
48:36in that that halfway point.
48:38And then to Mark's point,
48:40refusals don't stop at vitamin
48:42K1 of auto repair. My sin does.
48:43Does it make it less problematic that
48:46that that is refused for most of us?
48:50I don't.
48:50I don't die on that sword because
48:52most moms are screened for gonorrhea,
48:55not all.
48:56And that's really important to be
48:58mindful of as gonorrhea rates are
49:01increasing and moms are screened are
49:04based on risk behavior in some instances.
49:08Hepatitis B vaccine is interesting,
49:10and my approach with trainees is there
49:12are three buckets of approach to this.
49:14One that the family doesn't know
49:17what hepatitis B vaccine is,
49:19and it's an opportunity for
49:20us to counsel them to their.
49:22They want the hepatitis B vaccine.
49:25They just don't want it in the
49:27newborn nursery and they want it
49:29at their pediatricians office.
49:30Some folks in my group feels
49:32strongly one way or the other,
49:34but that's one that I don't
49:35feel as strongly about the third
49:37and more problematic.
49:38Bucket is I don't want hepatitis B vaccine.
49:40I don't want any vaccine and I
49:43have a pediatrician that aligns
49:44with me and that's harder.
49:46In addition to hypoglycemia
49:48refusal that Mark mentioned there's
49:50others that are more problematic,
49:52so critical congenital
49:53heart screening refusal,
49:55so this is a pre and post ductal
49:57pulse ox pulse oximeter that
49:59we place that's noninvasive,
50:01a little sticker on the baby's hand and foot,
50:03and parents will refuse that
50:06transcutaneous bilirubin measurements.
50:08Hearing screams,
50:10I have a colleague at Dartmouth
50:12who tells me that parents refused
50:14the hearing test because they feel
50:16that the government is putting
50:18things in the baby's brain.
50:20The one particularly challenging one
50:22that my colleague Electrosurgery Kez,
50:25has to deal with when she was the
50:26medical director at Saint Rayfield,
50:27was refusal of the birth certificate.
50:30In that scenario,
50:32we involved our social worker DCF team.
50:35And. We let the family go home,
50:38but it was a very very challenging
50:40situation that I don't.
50:41I still don't feel very
50:43great about what happened.
50:46And then finally,
50:47my colleague at UCSD Michelle lesson.
50:50I just published her a review
50:53on refusals in the clinics with
50:55parents perinatology and talk
50:57about therapeutic hesitancy and
50:59what we proposed is there is a
51:02spectrum of hesitancy and refusal,
51:03and it takes a skill set on this.
51:05Decide on the side of the provider that
51:08includes high emotional intelligence,
51:10listening and a lot of patients.
51:14So a couple of strategies that we.
51:17We propose one is MRQ alluded to.
51:21This was the the the critical piece
51:23of building alliance and how do you
51:25do this as a hospitalist when you're
51:26meeting a family for the first time?
51:29Thinking about standard scripting and.
51:32There's a lot of evidence
51:34in the vaccine literature.
51:35Hesitancy literature around
51:36higher success with opt in,
51:38which is what we do with vitamin K.
51:40It's time for your child's vitamin
51:43K injection versus do you want it?
51:45Also important is displaying curiosity.
51:48Tell me why?
51:51And determining who is the decision maker?
51:54Sometimes it's some other,
51:55and sometimes there are other people,
51:56so you have to determine.
52:00Who's going to make that decision?
52:03Make the recommendation.
52:05Meet the family where they are,
52:07but the other important thing is
52:10persistence and the value of the nudge.
52:12I felt like at the beginning,
52:15almost distraught and defeated when
52:17a family refused Vitamin K and I I
52:20felt like I failed the the child.
52:23But what I felt what I know now
52:25after years is by planting that seed.
52:28And going in the next day,
52:29I may have opened the door a little
52:31bit for the next person that
52:33comes in to talk to the family.
52:35When does refusal cause harm?
52:38And parents have the right to
52:40decline many medical interventions
52:42and and we love them.
52:43The challenge and the challenge around
52:46laws and and that and mandates in states
52:50is tricky because as I said in New York.
52:54Vitamin K is mandated,
52:55but I have colleagues there who deal
52:58with this problem still because.
53:00Do you report to DCF and is DCF going
53:02to remove the child just because the
53:04family didn't get the vitamin K injection?
53:07And then the last point,
53:08I'll say two quick points why we
53:10did develop a refusal form at Yale.
53:13Does that actually change parents mind?
53:15In my opinion,
53:16no.
53:16I think we do it more to document that we've
53:20done the education and there's value in that.
53:22But the other important piece is that
53:24we're training the next generation.
53:26So thinking about how we handle
53:28refusals and how we teach,
53:30how we teach our trainees to
53:32talk to families, develop trust.
53:34This is key,
53:36so I'll stop there and and
53:38just one last point again,
53:40my my colleagues.
53:40Like I mentioned,
53:41Elena Eragon and Alexis Rodriguez
53:44developed a really nice tool kit
53:47that they disseminated at a workshop
53:50this year and that is available which
53:53mark we will share with you. Thank you.
53:59Thank you so much,
54:00jaspreet, that was great.
54:02I want to introduce now.
54:03Please doctor Naomi Laventhol
54:05from the University of Michigan.
54:07She's a clinical associate professor
54:09in the Department of Pediatrics
54:11and Communicable diseases,
54:12and she's a member of the Division
54:14of Neonatal Perinatal Medicine.
54:15They only is an accomplished
54:18neonatologist a product of the
54:20University of Chicago system,
54:21who was an important figure
54:23in the world of neonatology,
54:24but also in the world of pediatric
54:27ethics on their helmets.
54:28Got research interests in neonatal bioethics.
54:30She's one of the leaders nationally.
54:32In fact,
54:32she's currently the chair of the
54:34American Academy of Pediatrics
54:36Committee on Bioethics,
54:37which is the policy writing arm of
54:41the bioethics efforts at the AP.
54:44And so I reached out to Naomi to think,
54:46what can we do about this,
54:47and what can we sort out,
54:49and I'm very interested in
54:50Naomi's thoughts on this,
54:51as both an accomplished neonatologist and
54:53a leader of the world of neonatal ethics.
54:56So,
54:56with that,
54:57Naomi take it away.
54:59Well, Mark, that was a really generous.
55:01Introduction thank you and
55:03thank you for having me here.
55:04It's really. It's really a pleasure
55:06to get to do this and this.
55:08I think for a neonatologist it's for someone
55:11whose primary job really is in the nick.
55:13You taking care of babies.
55:14This is so close.
55:16This is so kind of personal for us and
55:19and that distress that Zespri describes.
55:21I think we've all felt that of sort
55:23of what are my obligations to this
55:25child in the face of this refusal,
55:27and this takes a lot of time.
55:28It takes a lot of sweat,
55:29equity and so so this is,
55:31I think this is personal for.
55:32For for people who care for these infants,
55:35I'm I'm going to confess upfront
55:36that my remarks, I think,
55:38are going to be less beautifully
55:40structured and follow less of
55:41a really admirably productive
55:43research arc compared to jaspreet.
55:45And one thing for those
55:46who don't realize this,
55:47having dabbled in research in this
55:49area is what a leader does pre Disney
55:52in this and how few people are really
55:54getting into the evidence about this.
55:56There's not a lot written about
55:58refusal of these newborn interventions,
56:00and I think that in and of itself.
56:02Is really telling and I'm really
56:04grateful that she's built this
56:05community of folks who are committed
56:07to advancing our knowledge about that.
56:09'cause 'cause you know in the later in the,
56:11UM,
56:11as my my late mentor Bill Meadow would say,
56:14good ethics start with good facts
56:16and so I think that information to
56:18inform this is is so important.
56:20So thank you for that work.
56:22My remarks are going to be,
56:24I think a bit more structured around
56:25responding to some of the things
56:27that marks that and a little bit
56:28around some of the things that
56:30Jaspreet said and I've sort of
56:31frantically taking notes to try to.
56:32Put some structure to this,
56:34but the first thing I want to set
56:36up is that I do think there are
56:38dramatic differences in the way
56:40this plays out for a baby who's
56:42sort of been sort of like reached
56:44the clutches of a neonatologist as
56:47opposed to a child is being cared
56:49for in the normal newborn nursery.
56:51And there's some really
56:52philosophical differences,
56:53I think that come into play and
56:55some of that has to do with,
56:57I think a appropriate response to
57:00the resurgence and interest and.
57:03A naturalistic and holistic birth
57:04experience and when you think about
57:06infants in a normal newborn nursery,
57:08your infants were born at home with midwives.
57:10Is the assumption that most babies,
57:12when they're born,
57:13are healthy and you know millennia
57:15of humanity.
57:16Support the fact that most babies
57:17are healthy when they're born.
57:19And so I think that that sort
57:21of setting of really emphasizing
57:23the maternal infant dyad and,
57:25you know, I realized,
57:26that's actually kinda dated
57:27way to talk about this.
57:28You know,
57:28we talk about pregnant people now,
57:30not pregnant woman in the
57:31world that has changed.
57:31When you think about this family
57:33structure and the sanctity of this
57:36family structure that the contemporary
57:38hospital normal newborn nursery has where
57:40we kind of prioritize non intervention
57:42and prioritize non separation.
57:44The minute if babies sort of in the
57:47ICU we've upended that whole thing
57:49and suddenly this strong strong.
57:52Emphasis on this very kind of holistic
57:54and family unit centered care goes
57:56away and the baby's condition.
57:58There's some reason that the
57:59baby is in the NICU, right?
58:00So in my world,
58:02most babies aren't healthy
58:03because healthy babies are in my.
58:06And so I think that
58:07appreciating that difference,
58:09and that that that that jarring mindset
58:12that that puts families through even
58:15if the baby is not fully admitted,
58:18but someone called the neonatologist
58:19to come and see the baby.
58:20Suddenly,
58:21we've challenged this idea that this baby
58:23is healthy and I think that that's a
58:26whole new stressor and pressure on families,
58:28particularly families who seek to avoid
58:30a lot of intervention around birth.
58:32And suddenly,
58:33you know,
58:33it's beyond just the birth plan.
58:35And sort of being,
58:36you know asked what do you want?
58:37And giving an answer,
58:38but there's I think,
58:39and among a lot of families a lot
58:41more apprehension about you're
58:42already trying to take away from
58:43me what I wanted for my person.
58:45And so I think that that
58:47contrast is really important.
58:48The other thing I want to contrast is
58:51interventions that we the preventative
58:53or screening interventions that
58:55uniformly offered to everyone
58:57versus risk based strategies,
58:59because I think there are some differences,
59:01they're not entirely different,
59:02but if you think about vitamin
59:05K for everyone uh,
59:06erythromycin eye ointment for everyone,
59:08as opposed to a risk based this
59:10baby had this well appearing.
59:12Baby has identified risk factors for
59:15sepsis and I think there's a sort
59:17of important symbolic act when you
59:19move out of universal recommendations
59:22versus personalized recommendations,
59:23and that might not be rational,
59:25but I think that it's there.
59:27And so by the time we're being
59:29asked to consider early onset sepsis
59:32evaluation for well appearing baby,
59:34I think to many of us that feels
59:36different than the refusal of vitamin
59:37K that we recommend to every infant
59:39who I want to say walks through the door.
59:41But that analogy is called fun.
59:43So I think that that that contrast
59:46is really important to the way
59:48different groups think about this
59:49and has contributed to the difficulty
59:51in finding a coherent and uniform
59:54strategy in that the philosophy
59:55of care for infants.
59:57So different when you think about
59:58them in the in the normal newborn
60:00nursery versus the Nikki.
01:00:02There are a few other things
01:00:03that I really want to highlight.
01:00:05One is, I think, to be really clear.
01:00:07One of the things that I work on a lot
01:00:08when I teach ethics is to be really
01:00:10clear about what we're talking about,
01:00:11and I think in this situation a lot
01:00:13of the time we're talking about
01:00:15the bundle of preferences that has
01:00:18become kind of an architect and the
01:00:20non interventional list family,
01:00:22particularly around birth,
01:00:23and we think of when I think about this,
01:00:26as in unitologist,
01:00:28and this reveals my own bias.
01:00:30But these are people who don't want.
01:00:33Any of what I'm selling, right?
01:00:34I have a bundle of stuff and and
01:00:36regardless of what their plans were,
01:00:38they didn't involve me and it didn't
01:00:40involve my artificial chemical
01:00:42plastic wrapped stuff.
01:00:43My disposable diapers,
01:00:44my bottles with rubber ******* like
01:00:46none of that is what they wanted.
01:00:48And I think that that group has dominated.
01:00:52I think our modern discussion about
01:00:54this and our anguish about this has
01:00:56been what my colleague tree begins order.
01:00:58Who writes really eloquently about
01:01:00this in the lay press talks at
01:01:02the cult of the natural?
01:01:04Right, but not every parent who refuses.
01:01:08One or more of these interventions
01:01:10is is of that philosophy,
01:01:13and sometimes parents say, listen,
01:01:15I'll take anything you recommend
01:01:17if it makes sense to me,
01:01:18but a one in a thousand chance
01:01:21of substance just like that.
01:01:22You know, you know,
01:01:23for me,
01:01:24the example of that would be the
01:01:26mark talked about savviness,
01:01:27but the student physician who says
01:01:29everything I've ever learned says
01:01:31that exposure to broader spectrum
01:01:33antibiotics is bad for microbiome,
01:01:34and this risk seems very low,
01:01:36and I'll accept rational recommendations.
01:01:38But I don't think this one is rational,
01:01:41and so I think being really precise
01:01:43in what we talk about and not UN
01:01:46inappropriately reducing this
01:01:48to a sort of war with the with
01:01:52the naturalist family is really
01:01:55important so that our our.
01:01:57R.
01:01:58Rubric that we develop policies and
01:02:00guidelines and I agree with Mark,
01:02:02I think at least within institutions,
01:02:04we need to be specific.
01:02:05But what that is isn't a sort of war with
01:02:08a type and that we're really staying in,
01:02:10like what is reasonable that for
01:02:12parents while we're on on marks.
01:02:14Beautiful spectrum of impermissible,
01:02:17permissible and obligatory.
01:02:19Does this fit that should be about
01:02:21what's right for the baby and not
01:02:23what we feel about a group of parents
01:02:26who parent in a particular way that
01:02:28has become kind of an archetype.
01:02:31There's a few more things I want to mention.
01:02:33If Mark will indulge me and one he
01:02:36alluded to and Jaspreet alluded to,
01:02:38but I really like to call this out by name,
01:02:40because this is such a source of
01:02:41misconception and a lot of the
01:02:43work that I do,
01:02:43particularly with house officers,
01:02:45and that has to do with who owns
01:02:48the outcome of refusal.
01:02:50And Mark talked really nicely
01:02:52about us being moral agents,
01:02:53and I think one of the distinct
01:02:55features of Pediatrics.
01:02:56If you think about marks,
01:02:57example of the woman who is anemic.
01:03:01After a car accident and would make
01:03:03an informed choice to risk death as
01:03:06opposed to getting a transfusion,
01:03:07we have both legal and I think moral
01:03:10mechanisms by which we don't have
01:03:12moral culpability in her death.
01:03:14Now, that doesn't mean we don't feel it,
01:03:16and that we don't feel bad about it,
01:03:17but we're well set up to
01:03:21make competent adults.
01:03:22Morally responsible for the
01:03:24outcomes of their choices,
01:03:25and that is not a luxury in Pediatrics that's
01:03:28not in doubt that we have in Pediatrics,
01:03:30particularly for infants.
01:03:31And so if if I abide apparent not refusing
01:03:36any form of vitamin K for an infant,
01:03:39and that baby has hemorrhagic
01:03:41disease of the newborn,
01:03:42I'm neither morally nor legally
01:03:44absolved by the fact that they
01:03:46were willing to own that choice.
01:03:48The parent might say,
01:03:49I'm really knowing that choice,
01:03:50but that's not.
01:03:51That's not OK.
01:03:53Relevant mechanism for us and the way
01:03:55I boil this down to trainees all the
01:03:57time is AMA or against medical advice.
01:03:59There's no AMA for kits and a mechanism
01:04:02of absolving ourselves of that
01:04:04culpability by virtue of sort of thing.
01:04:07I am willing to take on the risks
01:04:08of this that's not available to us,
01:04:10and I'm I'm alarmed at how
01:04:13many people are fuzzy on that.
01:04:16And I think that really does come to
01:04:18play with some of what the mechanisms
01:04:20that would jaspreet talked about
01:04:21with the sort of refusal forms.
01:04:23And stuff.
01:04:24I.
01:04:25My interpretation of things like
01:04:27these informed refusal forms is what
01:04:29those are our choice architecture.
01:04:31Those are nudges.
01:04:32Those are to sort of use anything we
01:04:35have to get what people to make the
01:04:37decisions that we think are good,
01:04:39but those are not releases of either moral,
01:04:41moral or legal culpability,
01:04:42and they won't protect you.
01:04:44And I don't want to get in trouble
01:04:45'cause we have a lawyer following me
01:04:46so I won't speak more about the law,
01:04:48but I just want to be really clear
01:04:50about what those refusal forms
01:04:51should mean symbolically, does.
01:04:53Uhm,
01:04:54two other comments and I think
01:04:57I'll probably stop after that.
01:05:00Had to do with the scope of parental
01:05:04authority and also fairness.
01:05:06So one thing that Mark mentioned that
01:05:08I've always found really interesting
01:05:10is this idea that people should have
01:05:13equal or fair access to bad decisions.
01:05:16And that's a hard that for me.
01:05:18That's kind of an interesting contradiction,
01:05:20but it does come up in terms
01:05:21of that savviness requirement.
01:05:23And when we think historically about,
01:05:24for example,
01:05:25who has refused vaccination?
01:05:27Uhm,
01:05:28so this idea that if we're going to
01:05:30allow a certain kind of savvy user
01:05:33to demand something or that demand
01:05:35something that we don't recommend or refuse,
01:05:38something that we do recommend
01:05:40that we maybe then should make
01:05:42those same bad choices available
01:05:43to people who don't
01:05:45have the savviness to ask for it.
01:05:46There's a purity of that argument that
01:05:48I can't that I can't deny. It's there.
01:05:50And and you know, this comes up.
01:05:52For example, in our world about offering
01:05:54comfort care at 24 weeks of gestation.
01:05:57Where at my institution the well
01:05:59counseled family that has repeatedly
01:06:01incoherently said that understanding the
01:06:04outcome statistics as we provided them,
01:06:07they would like to pursue comfort care
01:06:08for the 24 week baby in some situations
01:06:10will have a heavy heart about that,
01:06:12but will allow it.
01:06:13And then that begs the question,
01:06:15if I'll allow it in one family.
01:06:16Join my obligated to offer it to every.
01:06:20And so I think that this idea of
01:06:22equal access to inferior medical
01:06:25choices is compelling and important.
01:06:28Important,
01:06:28but to me also deeply troubling.
01:06:30And the flip side of that is
01:06:32when we think again,
01:06:33for examples of examples like
01:06:35vaccine refusal and not just the
01:06:38savviness requirement but the.
01:06:40The privilege to be able to refuse
01:06:43some of these interventions and the
01:06:45relative safety of refusing those
01:06:48interventions for well resourced families.
01:06:51If you have access to a pediatrician
01:06:53who answers your calls 24 hours
01:06:54a day and a vehicle,
01:06:56and the ability to park and the ability
01:06:57to have child care to bring your child,
01:06:59and you can respond to illness differently,
01:07:01and so as refusal of these interventions
01:07:04sort of disseminates and becomes more
01:07:06broad in a society where people with
01:07:09really little advantage and few resources.
01:07:11I think the potential for the
01:07:13consequences of that, UM,
01:07:15are different,
01:07:15and I just think that's something
01:07:17really important.
01:07:18Think about you know what will be
01:07:20the consequences on the children of
01:07:22the most disadvantaged families as as
01:07:24refusing these things becomes more popular.
01:07:29Briefly, and you could,
01:07:31we could fill hours on this.
01:07:33Mark and I have talked offline about.
01:07:36Whether and how this is different for
01:07:39infants compared to older children,
01:07:41and whether that's right or wrong,
01:07:43and I think he and I both Lynn on the on.
01:07:45The decision that it's probably not right,
01:07:47but I think it's there.
01:07:48And when you know if you
01:07:50think about it visually,
01:07:51the marks visual is so helpful of of what
01:07:55falls in the spectrum of permissible,
01:07:58I think implicitly,
01:07:59as a society that range is wider
01:08:03for for a parental infant dyad,
01:08:05for newborns, and it is.
01:08:07For older children,
01:08:08and I think that we afford.
01:08:11It's a extended parental authority
01:08:13or extended parental rights
01:08:14in the newborn period that we
01:08:16wouldn't afford to older children,
01:08:18and I think that's been shown in
01:08:19a lot of really elegant studies.
01:08:20I think Andy Johnny is the hero of
01:08:23that of talking about about how
01:08:25somehow or another we don't afford.
01:08:29Infants the same moral status
01:08:31as we do. Older children,
01:08:33and I think that that implicitly has a
01:08:35lot to do with why we have historically
01:08:38allowed people to refuse fund.
01:08:39Some of these things when in a comparable
01:08:42situation an older child we might not,
01:08:44and I think this this now in a sort
01:08:47of cultural way, has a lot to do
01:08:49with this right to have a birth.
01:08:50How you want it.
01:08:51And this the birth that a family
01:08:53and visions for themselves and
01:08:55their infant takes some moral
01:08:57priority over the absolute medical
01:08:59best interest of that nature.
01:09:00And I think that contradiction
01:09:02is really hard, for,
01:09:03for for obstetricians,
01:09:04infinite ologist and family,
01:09:06family medicine,
01:09:07docs and and normal newborn attendings
01:09:09is this idea that somehow or
01:09:12another that parental authority the
01:09:14purview of that parental authority?
01:09:16Contracts as that child nears the
01:09:18door and then gets discharged.
01:09:20But in the newborn period we
01:09:23somehow haven't quite granted
01:09:24personhood to that info.
01:09:26Uhm,
01:09:27the final thing I want to say gets
01:09:29just gets back to a little bit of
01:09:31what I was talking about with this,
01:09:33the culpability issue.
01:09:34And who owns the outcome?
01:09:35Because this is another thing I
01:09:37think where people get derailed
01:09:38sometimes and it's important not to.
01:09:40Whoever his feet were going to
01:09:42hold to the fire for the burden of
01:09:44refusing one of these interventions,
01:09:46whether it's the clinician,
01:09:48whether it's the parent that culpability
01:09:50doesn't hinge on the outcome.
01:09:52So what and what I mean by that
01:09:54is that I sometimes get question,
01:09:55you know,
01:09:56if a parent refuses an MMR vaccine
01:09:59and the child gets the measles.
01:10:02Or is that parents somehow more
01:10:04culpable than when they they
01:10:06refused the memory and the child
01:10:08didn't get the results and the
01:10:09the the thing that the refuser or
01:10:12the abider of the Refuser owns
01:10:14is the decision not to do it,
01:10:15not the outcome?
01:10:17And so I I think that we should be
01:10:20careful about getting into the logic
01:10:22or we say that whether or not you
01:10:24have moral or legal culpability for
01:10:26a bad outcome doesn't depend on on
01:10:28whether how it comes to fruition.
01:10:31So the. This sort of.
01:10:34The moral wrong innocence is not doing
01:10:37what's best interest in the baby,
01:10:39not whether or not the one in
01:10:401000 steps section happens.
01:10:41I don't.
01:10:42I don't know that I've explained
01:10:42that as well as I wanted to,
01:10:43but I think that people get
01:10:45derailed with that a little bit.
01:10:46So I just I just wanted to make that point.
01:10:50I think that's about what I have
01:10:51to say and I'm really curious to
01:10:53to hear our third panelist and and
01:10:55what this audience has to say.
01:10:58Thank you so much, Naomi.
01:11:00I now want to return to Jay Sicklick.
01:11:03Attorney cyclic began as a staff attorney
01:11:05in the Center for children's Advocacy and
01:11:08founded the first collaborative medical legal
01:11:11partnership in the country back in 2000.
01:11:13Uhm, and prior to that he was on the faculty
01:11:15at University of Connecticut School of Law.
01:11:17He served as a senior staff attorney
01:11:19at the Legal Aid Society in the Bronx.
01:11:21He's currently an adjunct professor of
01:11:24law at the University of Connecticut.
01:11:26He's a clinical instructor in the
01:11:28Department of Pediatrics at the University
01:11:29of Connecticut School of Medicine.
01:11:31Mr. Cyclic is a graduate of Colgate
01:11:33University in Boston College Law School.
01:11:36He's the author of several publications,
01:11:38and he's spoken at numerous conferences
01:11:41on hospital, hospital related issues,
01:11:44legal health related topics,
01:11:46and so he's a wonderful person to come
01:11:50and speak to us about this question.
01:11:52So Jay, I want to thank you so much
01:11:53for doing this with us and I'll
01:11:55turn it over to you.
01:11:58Thanks Mark, I appreciate it and it's it's
01:12:01hard to back clean up in this line up.
01:12:04There are some impressive heaters before me.
01:12:07I hope I'm not like the Yankees and
01:12:09perpetually strike out every game at the
01:12:11number 4 slot, but we'll do our best.
01:12:14I'm going to be brief,
01:12:15I promise 'cause I know there are probably
01:12:17a lot of questions and a lot of thoughtful
01:12:20folks who have opinions on the clinical side.
01:12:23I'm going to be really brief
01:12:26about the legal perspective here.
01:12:28One of my favorite quotes in the
01:12:29law not being novel about this,
01:12:31but most folks probably have heard it
01:12:33is from Oliver Wendell Holmes, right,
01:12:35life of the law has not been logic.
01:12:39It has been experience, right?
01:12:40The life of the law has not been logic.
01:12:42It has been experience.
01:12:44Blog doesn't use logic as a
01:12:48fundamental paradigm like the wonderful
01:12:51paradigm you set up,
01:12:52mark and the different issues that your
01:12:55colleagues here have talked about.
01:12:57That is why mandates exist.
01:12:59But they exist from a
01:13:00legislative perspective.
01:13:01If you break this down
01:13:03into kind of three pockets,
01:13:06there are legislative mandates.
01:13:07What are the consequences of not following
01:13:11those mandates that require certain
01:13:13type of testing or care and treatment?
01:13:16We don't have a lot of those in Connecticut.
01:13:18There aren't a lot nationwide,
01:13:20I think that you know doctor loyal talked
01:13:23about the vitamin K requirement in New York,
01:13:27but she also implied what
01:13:28are the consequences?
01:13:29Of not adhering to that mandate,
01:13:32the second category is has the refusal to
01:13:36a pink care reached a level of neglect,
01:13:40specifically medical neglect?
01:13:41What does that mean though?
01:13:44Does it mean there's going to
01:13:46be some further consequences,
01:13:47or does it mean that there's just
01:13:49an issue of medical neglect and
01:13:51we're going to let it live there
01:13:53without any further action?
01:13:55In #3,
01:13:55there's the idea.
01:13:57Have you crossed the threshold
01:13:59into what constitutes?
01:14:00Obligatory care as Mark talked about
01:14:02talked about that the consequences
01:14:04of failure to treat could result
01:14:06in some catastrophic event,
01:14:08and he crossed over into what I think
01:14:11we would call the idea that there is
01:14:13a requirement of state intervention
01:14:15into this particular issue or into
01:14:18the greater issue or the larger issue
01:14:20of should we be requiring mandates
01:14:22for these types of screenings or
01:14:24these types of blood tests,
01:14:26or these types of treatments,
01:14:28and that is the ultimate question here,
01:14:29right?
01:14:30What is the ultimate end game in
01:14:32terms of the law and how does that
01:14:35work from a practical point of view?
01:14:38In terms of what constitutes the legal
01:14:40right of a parent to make decisions,
01:14:43the last always extraordinarily
01:14:45on the backs of the parent.
01:14:48The presumption is that parents
01:14:50get to make health care decisions
01:14:52for their children.
01:14:53It is rooted in the 14th amendment,
01:14:55is rooted in the due process clause.
01:14:58If the parents overstep their bounds,
01:15:00like in that famous Prince case,
01:15:02which ironically is Mark brought
01:15:04up involved the Jehovah's Witnesses
01:15:06family who? Or attempting to require
01:15:09their child to sell religious literature
01:15:11in violation of Massachusetts.
01:15:13Log this back in the mid 40s,
01:15:15the Supreme Court waited and said no,
01:15:17the parents can't require their child to
01:15:19violate child labor laws under the auspices
01:15:22of the First Amendment right of religion.
01:15:25Even the auspices of the parents
01:15:27right to care for their children
01:15:30under the 14th amendment.
01:15:31But we have made these decisions along
01:15:34the way under this notion of parents.
01:15:37Patri I that the law does get to intervene.
01:15:40The state gets to intervene.
01:15:42The state entity gets to
01:15:43intervene if that line is crossed,
01:15:45and that's what I think we're
01:15:47talking about here.
01:15:48We've made mandates for vaccines,
01:15:50but the penalty is that your child
01:15:52can't go to school or can't go to camp,
01:15:54or can't go to preschool,
01:15:56but we haven't taken away the parents
01:15:59right to refuse that vaccination.
01:16:01To the extent that it requires
01:16:03state intervention in terms of
01:16:05removing a child and requiring.
01:16:08That vaccine we look at it along
01:16:09the lines of the threshold that
01:16:11Mark talked about before.
01:16:13If withholding care is in fact
01:16:15going to create some catastrophic
01:16:17event if it is lifesaving care,
01:16:20which is necessary,
01:16:21then the state has the right to intervene
01:16:23and we're all familiar with the Cassandra
01:16:25C case that occurred about 5-6 years ago,
01:16:28which resulted in state intervention and
01:16:31forced medical treatment for a teenager.
01:16:33So we know there is a line
01:16:36that needs to be crossed,
01:16:37but the law.
01:16:38As I said,
01:16:38does not work with the same precision
01:16:41and this is one of these paradigms
01:16:43that would allow us to say,
01:16:45well,
01:16:45we're going to make a line in the
01:16:48sand rule that will in fact require
01:16:50state intervention at a certain point,
01:16:53which would then take those rights
01:16:56away from the parent as a as important
01:16:58as they may be to allow refusal of
01:17:01treatment or denial of particular care.
01:17:04But there is a line.
01:17:06It is a moving line.
01:17:07It's not a static.
01:17:08Long as technology improves
01:17:10and that's the decision,
01:17:11I think that has to be brought to
01:17:14bear on the folks who make the laws
01:17:16in each jurisdiction to determine.
01:17:18Has this line reached the point
01:17:21where state intervention probably
01:17:23should be necessary and required?
01:17:25If that line has been met,
01:17:27I'm going to stop there because
01:17:28I know we're up against it.
01:17:30Mark and I'm going to,
01:17:31you know,
01:17:32keep the lines open for questions on this.
01:17:34I could probably talk for a lot longer,
01:17:36but I do want to give folks in the audience.
01:17:38And your colleagues at a chance to.
01:17:40If further the discussion along the
01:17:42the premise that you that you provided
01:17:45thank you. Thank you so much Jake.
01:17:47Now just very quickly 'cause we have a few
01:17:50minutes left for a for a few questions.
01:17:51I want to introduce Sarah Hall who is
01:17:53the associate director of the Program for
01:17:56Biomedical Ethics here to School of Medicine.
01:17:58Given that some of the questions may be to
01:17:59me and the well known fact that I can't
01:18:01actually walk and chew gum at the same time,
01:18:03I will not be moderating this discussion.
01:18:05But Doctor Hall will Sarah.
01:18:07I thank you so much for this.
01:18:08And I turn it over to you.
01:18:10Thank you so much, Mark and thank
01:18:12you to all of our panelists for
01:18:14this really fascinating discussion.
01:18:16And it is true. And, you know,
01:18:18I can say this as as an adult
01:18:21cardiologist that that that as
01:18:23as ethically fraught as a lot of
01:18:25adult medicine can be, pediatric
01:18:27medicine has so many more wrinkles,
01:18:29and these are some really tough decisions.
01:18:32So without further ado,
01:18:34since we don't have a ton of time,
01:18:36let me just start out question
01:18:38one. In addition to the role of prognosis.
01:18:41Feasibility and rights.
01:18:42Does the caregiving burden on
01:18:44the child's family or parents
01:18:45affect the analysis at all?
01:18:47This was this question was asked
01:18:48during marks portion of the talk
01:18:51or is this something that gets
01:18:53factored into the question of
01:18:54feasibility and again that was a lot
01:18:56so I'm just going to repeat that in
01:18:57addition to the role of prognosis,
01:18:59feasibility and rights,
01:19:01does the caregiving burden on
01:19:03the child's family or parents
01:19:04affect the analysis at all or
01:19:06is that just something that is
01:19:08factored into the feasibility?
01:19:09So I would say I think it's a great question.
01:19:12And I would say remember I talked
01:19:13about relevant rights and the other
01:19:15rights that they possibly consider
01:19:16would be the families rights.
01:19:17So this is where I would consider it.
01:19:19So at some point should the burden to the
01:19:22family be considered in this equation
01:19:24and and and the short simple answer is
01:19:26that this is supposed to be about the
01:19:28benefits and burdens to the child in reality.
01:19:31At some level we do allow some consideration,
01:19:33I mean different different ethicists.
01:19:34Don't different level that at some point
01:19:36the parents burden should be considered,
01:19:38but for the things we're
01:19:40talking about and this,
01:19:41this gets in a different direction about.
01:19:43For example, care of children
01:19:45who have significant disability,
01:19:47but for this when it comes to these
01:19:50screening procedures that we wish to do that,
01:19:52the burden to the family is
01:19:55actually negligible.
01:19:56There may be some burden of the child,
01:19:57for example,
01:19:58exposure to the antibiotics or
01:19:59the pain of the needle,
01:20:01but the burdens others for this
01:20:02question is went out there.
01:20:04But for other questions we face.
01:20:05Yeah, that's a fair point.
01:20:06And that's something that has to
01:20:07be considered.
01:20:09Mark can I take a slightly opposing view,
01:20:13please? So I think I I can't argue
01:20:16with the fact that it is considered,
01:20:19and when parents are taking on,
01:20:21I'd say sort of permissible but not
01:20:25obligatory intervention decisions.
01:20:26How this will affect their lives,
01:20:28their jobs, their home life,
01:20:29the health and well being
01:20:30of their other children.
01:20:31I think parents think about all of that,
01:20:33and that's what good parents do.
01:20:35However, remember that that our
01:20:37framework of ethics that we
01:20:39practice in is that above all else,
01:20:42we don't use people as a means to enact and.
01:20:44That we should be at the end of the day,
01:20:49really thinking about what's right
01:20:51for that child and not whether
01:20:52what's right for that child is
01:20:54convenient for other people and one,
01:20:56and I understand I'm saying convenient
01:20:58to be a little provocative,
01:21:00but I think again,
01:21:01going back to that personhood thing,
01:21:03I think we're more willing to talk
01:21:05about caregiver burden Fernand fence.
01:21:07Then we are for an older child,
01:21:09and I think this idea that that that
01:21:11that child the infants still somehow
01:21:13morally are viewed more as an appendage then?
01:21:16As a free standing.
01:21:17Individual human with sort of
01:21:19ethical standing and the right not
01:21:21to be used as a means to an end.
01:21:24You and I are on the same page on that
01:21:25they only accepted very well is that
01:21:27I think it comes down to moral status
01:21:28and moral standing that we afford.
01:21:30We accord a lower moral status to newborns
01:21:32at some in our minds that older children,
01:21:34and so I don't see that as a morally
01:21:37relevant difference that kids two days
01:21:39old versus two years old or 12 years old.
01:21:41So I'm with you.
01:21:42I think those things get considered,
01:21:44but ultimately it has to be
01:21:46what's best for the child.
01:21:47Yes, please.
01:21:48Sarah, I'm sorry,
01:21:50don't be sorry that was excellent.
01:21:52Is the factual basis for
01:21:54parents refusal ever relevant?
01:21:56If the refusal is based on a
01:21:58demonstrably false belief such
01:21:59as the vaccine autism link
01:22:01that's been debunked, perhaps,
01:22:02does that alter its moral standing
01:22:04or our obligations
01:22:06to respect it?
01:22:13Anyone wanna take that?
01:22:14You want me to take it?
01:22:16I think it's a great question.
01:22:19Go ahead Jeffrey.
01:22:20Well I I think it's it's very
01:22:23difficult because we can't force the
01:22:24vaccine on them, even if they're
01:22:27if their beliefs are are wrong.
01:22:29So what we attempt to correct those
01:22:33beliefs, guide them and nudge.
01:22:37But it's it's a great question. Yeah,
01:22:41I I was doing please I I
01:22:42would say that for me it is.
01:22:43It would be based on the
01:22:45things these refusals,
01:22:46whether or not something is
01:22:48obligatory versus advisable.
01:22:49For me it's got to do with the prognosis
01:22:51with and without the treatment and the
01:22:54consideration of relevant rights etc.
01:22:55So that's what you're determined,
01:22:57not what the parents are.
01:22:58Reasoning is if this.
01:22:59If the data suggests that this is
01:23:01going to do enough to prevent the harm
01:23:02that it's that we are justified and
01:23:05overriding the parents decision whether
01:23:06that decision was based on religious.
01:23:08Police philosophical beliefs of
01:23:09false understanding of the science.
01:23:11In any case,
01:23:12if I think if the data suggests
01:23:14that the benefits outweigh the risks
01:23:16for the child to such a significant
01:23:18extent that we would do it regardless
01:23:20of the source of the parents,
01:23:21I think regards to the source of the
01:23:23parents opinion or judgment on it.
01:23:26And connect it if you don't mind me jumping
01:23:28in for one second mark, I would leave.
01:23:30I would say that the you know parents,
01:23:34incorrect assumptions or their factual
01:23:37miss apprehension of the of the data
01:23:39would be directly relevant to whether
01:23:42or not a judge might intervene and say,
01:23:45you know the facts of this case
01:23:46are based on the evidence,
01:23:48not what your perceptions are not,
01:23:50whether you believe you have moral
01:23:51standing which can be considered.
01:23:53If there's some kind of religious objection,
01:23:55but not for the.
01:23:56Idea that there is imminent harm to a
01:23:59child and there has to be intervention
01:24:01in order to invoke immediate care,
01:24:04so that may have some more kind of looser.
01:24:10Interpretation in terms of moral relevance,
01:24:12but in terms of legal relevance,
01:24:14it would be it wouldn't be considered
01:24:16as in as nearly as important,
01:24:18for example,
01:24:19as the evidence and the factual data
01:24:21that supports the decision to intervene
01:24:23or to make a declaration of neglect that
01:24:26would then require state intervention.
01:24:31Well, and the converse is just if
01:24:33reasonable people can really disagree.
01:24:35We probably shouldn't do
01:24:36it as obligatory, right?
01:24:38If there are strong,
01:24:39well founded, rational reasons,
01:24:41why an informed parent would
01:24:43not want that intervention,
01:24:45it's a weaker case for saying
01:24:47they shouldn't have a choice.
01:24:49That's actually
01:24:50a great segue into
01:24:51the next question. If we if you don't
01:24:53mind if I squeak it in an which is,
01:24:57how do we reconcile the
01:25:00treatments and interventions
01:25:00to a mother and
01:25:01labor may violate her
01:25:02autonomy and in fact be subject
01:25:04to practice patterns which vary
01:25:05widely across obstetricians.
01:25:07A single obstetrician can always say
01:25:09that he or she thinks the caesarean
01:25:10is in the baby's best interest,
01:25:12but nine other obstetricians may disagree.
01:25:14In addition, much of what we have
01:25:16introduced, his interventions
01:25:17in labor units over the decades
01:25:18has not improved neonatal outcomes.
01:25:20So perhaps we have lost parental trust.
01:25:27Uhm? Well, I I think given the time
01:25:30that that I would just point out that
01:25:32what's done during pregnancy is very,
01:25:34very different than what's
01:25:36done after the child is born.
01:25:37From an ethical point of view,
01:25:39which is to say that that when that baby is
01:25:41born and they only look at this as well.
01:25:42But now we have a separate human
01:25:44being who I believe has rights
01:25:46as a human being separate,
01:25:48and that we can do things to this human
01:25:50being to this child without having to
01:25:52violate the bodily integrity of anybody else.
01:25:54But we may have to.
01:25:55We may have to go against some
01:25:57parents opinion but during pregnancy.
01:25:59I don't think I may have.
01:25:59I I didn't know if I caught the
01:26:02whole question but but during
01:26:03pregnancy obstetricians,
01:26:04I believe,
01:26:05and I think most bioethicists
01:26:07and most obstetricians.
01:26:08Now we believe that options are not in
01:26:10a position to do anything to a pregnant
01:26:13woman of soundmine that she doesn't want.
01:26:15So she has a right to refuse
01:26:17anything and everything even even
01:26:19if there is something that even
01:26:21if the fetus is at risk of death,
01:26:23that I think if if someone thinks
01:26:25that C-section needs to be done
01:26:26to save a baby's life,
01:26:27to save a fetus's life.
01:26:29Future baby's life and the mother says no,
01:26:31the C-section shouldn't happen that her
01:26:34right to bodily integrity ultimately Trump's.
01:26:36That wasn't always that way and
01:26:38obstetrics in United States,
01:26:39but certainly in in the last
01:26:41couple of decades.
01:26:42I think we see more and more that that.
01:26:43That holds sway and I
01:26:45think appropriately so so.
01:26:46The obstetricians aren't in a
01:26:48position to say something so
01:26:49obligatory to a pregnant woman.
01:26:51In my opinion.
01:26:54I think if I if I may,
01:26:55one piece of Jessica brings up in
01:26:57that question is is around trust,
01:26:59which I do think is is a theme and at
01:27:01least my experience is a lot of these
01:27:04refusals are based on his perception
01:27:07or an experience that caused a family
01:27:10to not trust the medical community.
01:27:19Well, perhaps. Sarah is editor,
01:27:22we are. We at the hour we
01:27:24are at the hour.
01:27:25We do have some more questions
01:27:26but we I know we have a hard rule
01:27:28of a of a hard stop at 6:30.
01:27:31So I wanted to give you a chance to
01:27:32provide a few concluding remarks.
01:27:36Thank you so much,
01:27:37Doctor Hall and thank you all for coming,
01:27:39especially to our panelists.
01:27:41A doctor, loyal Doctor,
01:27:42Leventhal, and attorney cyclic
01:27:43and all of you who came up.
01:27:46You can find that we're doing this
01:27:47twice a month in the evening.
01:27:48We have some some seminars that I
01:27:50hope are interest to you biomedical
01:27:52ethics at yale.edu and if you reach
01:27:54out to us through there will get you
01:27:56on the mailing list so that you'll
01:27:58get notified of each of these things.
01:28:00Many people than Medical Center are.
01:28:02I also saw the names of some
01:28:03of the folks here.
01:28:04Some pediatricians I've known over the years.
01:28:06You are absolutely gold standard.
01:28:08The kind of people that I would
01:28:09go to with these questions.
01:28:11So if you have advice on this,
01:28:12if you have thoughts on this,
01:28:13you didn't get to bring here.
01:28:15My I can be reached and I'd be
01:28:17interested in your opinion.
01:28:18I'm at
01:28:21mark.mercurio@yale.edu and you can
01:28:22find me also through that website,
01:28:25so I'm this is a real issue we're facing
01:28:27and I'm happy to have anybody's opinion,
01:28:30particularly pediatricians that I
01:28:31have known and respected for so long
01:28:33who were kind enough to come tonight.
01:28:34Sarah, thank you so much for doing this.
01:28:36And come with that, I will say goodnight.
01:28:38Thank you all.
01:28:40Thank you everyone.