Ultra-Long Pediatric Hospitalizations: The Ethics of Living in the Hospital

Transcript

• 00:00Got, another fourteen days before
• 00:02you hit the deadline, to
• 00:04get your name in, and
• 00:04we'll see,
• 00:06we'll see how many candidates
• 00:07we get for enrollment. But
• 00:08it's, it's very exciting. Something
• 00:10new this year for the
• 00:10medical students who want to
• 00:12actually have a concentration in
• 00:13bioethics
• 00:14as part of their, and
• 00:15it can show up on
• 00:16your CV when you're done
• 00:17too.
• 00:19Tonight,
• 00:20tonight's session, it says program
• 00:21for biomedical ethics, but tonight's
• 00:23is actually,
• 00:25sponsored by the Yale pediatric
• 00:26ethics Program. And it doesn't
• 00:28much matter to you. It's
• 00:28the same thing. Twice a
• 00:29month, we meet here. Most
• 00:30of you know it. Some
• 00:31of you don't. We meet
• 00:32here twice a month.
• 00:35And if you're not on
• 00:36our mailing list, please just
• 00:37send me a note,
• 00:39to mark dot mercurio at
• 00:40yale dot e d u
• 00:41or karen dot kolb at
• 00:43yale dot e d u,
• 00:44and we'll make sure you
• 00:45run the mailing list so
• 00:46you're always aware of these
• 00:46things. Or you can just
• 00:47Google biomedical ethics at Yale,
• 00:49and you'll find our site,
• 00:50and you'll see all the
• 00:51programs
• 00:52that are coming up.
• 00:54The way this works, before
• 00:55I introduce, doctor Laventhall, our
• 00:56speaker tonight, most of you
• 00:58know, but just to remind
• 00:59you well, is that doctor
• 01:00Laventhall will speak for about
• 01:02forty five minutes, give or
• 01:03take a little bit,
• 01:05and then, I'll moderate a
• 01:06q and a session. You
• 01:07guys are encouraged to ask
• 01:09as many questions as you
• 01:10want. We'll have a conversation.
• 01:13Please wait. When if you
• 01:14have a question, raise your
• 01:15hand, and one of us
• 01:16will bring a microphone to
• 01:17you. And wait until you
• 01:18have the microphone in hand
• 01:19to ask your question because
• 01:20we have a lot of
• 01:21folks on Zoom tonight as
• 01:22well. We want them to
• 01:23be able to hear your
• 01:23question and everybody else in
• 01:24the room, and I stand
• 01:26here as the weak link
• 01:27in the chain of hearing,
• 01:28so that's fine. So if
• 01:29I can't hear you, there
• 01:30is someone else who can't
• 01:31hear you as well. So,
• 01:32please wait till you get
• 01:33the microphone to ask your
• 01:34question,
• 01:36and we'll go for as
• 01:37long as everybody's interested up
• 01:39to a hard stop
• 01:40at six thirty. And so
• 01:42I apologize in advance if
• 01:43you had something you really
• 01:44wanted to ask because at
• 01:45six twenty eight or so,
• 01:47I will, I will shut
• 01:48it down and, invite you
• 01:50to come back in two
• 01:51more weeks for our next
• 01:52seminar. But tonight, we have
• 01:54an old friend of mine
• 01:55who is Naomi Laventhal.
• 01:57Naomi's
• 01:59educational pedigree takes us from,
• 02:02Indiana University
• 02:03to LSU
• 02:05to University of Chicago. At
• 02:06University of Chicago, I think
• 02:08you have a master's degree
• 02:10in is it public, public
• 02:11affairs?
• 02:13Public policy. Public policy, a
• 02:14master's degree in public policy
• 02:15as well as having done
• 02:16their the, ethics fellowship there
• 02:18at the McLean Center, which,
• 02:20many of you are familiar
• 02:21with. And if you're not,
• 02:22this is one of the
• 02:23one of the preeminent, bioethics
• 02:25centers in the country, there
• 02:26at the University of Chicago.
• 02:28From there, doctor Laventhall went
• 02:30to the University of Michigan
• 02:31where she has risen through
• 02:32the ranks both in the
• 02:33world of bioethics and in
• 02:34the world of neonatology.
• 02:36She's an attending neonatologist
• 02:38and and now is in
• 02:39fact the division chief, in
• 02:41neonatology
• 02:41at Ann Arbor.
• 02:43No small thing.
• 02:44In addition, she is a
• 02:45national leader in the field
• 02:47of bioethics.
• 02:48She does ethics consultations in
• 02:50adult and pediatric cases at
• 02:51Ann Arbor. But,
• 02:53again, many of you know,
• 02:54and and if you don't
• 02:55know, the American Academy of
• 02:57Pediatrics has a, a a
• 02:59body called the Committee on
• 03:00Bioethics
• 03:01that basically is the policy
• 03:02making
• 03:03group at the AAP.
• 03:05And this group writes guidelines
• 03:07and policies to the difficult
• 03:08ethics questions that people who
• 03:10practice pediatrics
• 03:12face.
• 03:13And Naomi is the chair
• 03:14of that group, which is
• 03:15based out of Illinois, but
• 03:16it's a national really an
• 03:17international group. So she is
• 03:19one of a handful of,
• 03:20true leaders in pediatric bioethics
• 03:22in the country. And I
• 03:23was delighted when she agreed
• 03:24to come here,
• 03:26and talk to us for
• 03:27a little bit about these
• 03:28ultra long hospitalizations,
• 03:30and I'll let her explain
• 03:32what that is to those
• 03:33of you who don't know.
• 03:34Many of you are very
• 03:35familiar with this already, but
• 03:36some of you is no
• 03:37doubt or not.
• 03:38So please join me in
• 03:39welcoming doctor Naomi Leventhal.
• 03:47Well, hi. It's really good
• 03:48to be here. This is,
• 03:49I think, the third time
• 03:50that we've tried to have
• 03:51me come here in person,
• 03:52and we finally succeeded. So
• 03:54I'm really excited about that.
• 03:56And one thing I'll say
• 03:57is I've been interested in
• 03:58this topic for a long
• 03:59time, but it's the first
• 04:00time I've been the, like,
• 04:02the the anchor speaker in
• 04:03a talk, and this is
• 04:04a brand new talk. So
• 04:05I'm trying to make sure
• 04:05that we end on time
• 04:07and have lots of time
• 04:08for questions, but bear with
• 04:09me.
• 04:10If I if I don't
• 04:10get the timing quite how
• 04:11I want it. Mark's going
• 04:12to keep me on the
• 04:14straight and narrow.
• 04:16So I don't have any
• 04:17conflicts of interest. One thing,
• 04:18you know, we're supposed to
• 04:18talk about whether I'm going
• 04:20to, you know, talk about
• 04:20off label therapies. And I'm
• 04:22not going to do that
• 04:22on purpose. But when you're
• 04:24talking about a patient who's
• 04:25been in the hospital for
• 04:26four hundred days, who's a
• 04:28child, there's no way that
• 04:29hasn't happened. So if it
• 04:30comes up along the way,
• 04:31I didn't I didn't mean
• 04:32to talk about that, but
• 04:33I might.
• 04:35And this is there are
• 04:36points of this talk. It's
• 04:37an ethics talk. You have
• 04:38to be intentionally provocative. And
• 04:40I'm going to do that.
• 04:41And if I haven't, like,
• 04:42punched you in the amygdala
• 04:43at some point, I didn't
• 04:45do my job.
• 04:46And the other thing, we
• 04:47get accused of this a
• 04:48lot, but our slides are,
• 04:49like, aggressively Maison Blue branded.
• 04:51And people sort of, like,
• 04:52complain about this sometimes and
• 04:54not sorry.
• 04:56And
• 04:57now what I really wanna
• 04:58do is, say some really
• 05:00nice things about Mark Mercurio,
• 05:02who,
• 05:03I first met at a
• 05:04conference in my first year
• 05:05out of fellowship where I
• 05:06was alone and I didn't
• 05:07know anyone. And a mutual
• 05:08friend of ours, like, dispatched
• 05:10him to come be nice
• 05:11to me at that meeting,
• 05:12and that he did. And
• 05:13it was really, like, an
• 05:14important thing for me. And
• 05:16he's been nice to me
• 05:17ever since that day. And
• 05:18he's offered me a lot
• 05:19of really sage counsel over
• 05:20the years and and camaraderie
• 05:22in neonatology and bioethics and
• 05:25sort of advocated for me
• 05:26to have some of the
• 05:26opportunities that he talked about.
• 05:28So that's really important to
• 05:29me.
• 05:30And the reason I have
• 05:31a picture of pina colada
• 05:32in this on this slide
• 05:33is I don't even remember
• 05:34what the thing was, but
• 05:35we had some disagreement about
• 05:37something during the pandemic that
• 05:39ended in I will buy
• 05:40you a pina colada. And
• 05:42the
• 05:43the
• 05:44the pandemic raged on, and
• 05:45it took us several years
• 05:46to finally have that. But
• 05:47we finally did in Southern
• 05:49California, and he got to
• 05:50meet my husband and my
• 05:50kids. And so it's it's
• 05:52this, like, in my mind
• 05:53now, it's Mark and Pina
• 05:54Coladas.
• 05:57All right. So I'm going
• 05:58to tell you about a
• 05:58case. And I've made this
• 05:59case a little bit vague
• 06:00on purpose because you can't
• 06:01really make these cases up
• 06:02to the same degree. So
• 06:03it's a real case that
• 06:04I've anonymized
• 06:05a bit.
• 06:06But so this was a
• 06:07term baby who had a
• 06:08skeletal dysplasia and never had
• 06:10a definitive diagnosis. This was
• 06:12before the whole genome was
• 06:13available in an epic
• 06:16order set near you.
• 06:18Admitted to the NICU for
• 06:20six months.
• 06:21And that's the beginning of
• 06:22the story.
• 06:23So
• 06:24after the baby had been
• 06:25in the NICU for six
• 06:26months, left our unit and
• 06:28went to different units, we'll
• 06:29do this differently,
• 06:30but went to our home
• 06:31ventilator unit in theory to
• 06:34get ready to go home.
• 06:36And at that point, the
• 06:37baby had multiple comorbidities,
• 06:40had pulmonary hypotension, had bronchomalacia,
• 06:42had a tracheostomy,
• 06:44had a surgical feeding tube.
• 06:45And after about a week
• 06:46there, had a code, and
• 06:48I'm using the term code
• 06:49code kind of loosely because
• 06:50for this baby over different
• 06:51times that meant different things.
• 06:52But some kind of bad
• 06:53cardiorespiratory
• 06:54event happened and the baby
• 06:55went to the PICU, the
• 06:56pediatric ICU.
• 06:58And this sort of cycle
• 07:00of
• 07:01to the PICU,
• 07:02back to the vent unit,
• 07:03to the PICU, back to
• 07:04the vent unit, always with
• 07:06codes,
• 07:07went on for three years
• 07:09before this baby ultimately left
• 07:11the hospital with like many,
• 07:12many code events at some
• 07:13point was in the PICU
• 07:14for fourteen months. This is
• 07:16an epically long hospitalization.
• 07:20At discharge, this baby had
• 07:21a tracheostomy, a ventilator,
• 07:23central venous catheter for reasons
• 07:25that even like when I
• 07:26looked at it, I couldn't
• 07:26quite figure out what that
• 07:27was for, a surgical feeding
• 07:29tube and twenty ish prescriptions.
• 07:33And after about a week
• 07:34at home, this child comes
• 07:35back in through the ER
• 07:36with respiratory distress,
• 07:38goes to the PICU after
• 07:39three days in the vent
• 07:40unit,
• 07:42after a sort of code
• 07:43on the floor in septic
• 07:44shock and died of multisystem
• 07:45organ failure after a compassionate
• 07:47transition to comfort care. And
• 07:49this is all within two
• 07:50weeks of having gone home
• 07:51from this three year hospitalization.
• 07:54So
• 07:55was this inevitable? Was this
• 07:57terrible luck? Was this a
• 07:59waste? Was this worth it?
• 08:00It's hard to know.
• 08:03Here's another one.
• 08:05It's a twenty five week
• 08:06baby who comes to my
• 08:07unit, which is level four
• 08:09NICU from a level three
• 08:10NICU at too much of
• 08:12a age for an airway
• 08:13evaluation. And if you're a
• 08:14neonatologist, that can mean almost
• 08:16anything.
• 08:18The NICU stay with us
• 08:19is characterized by multiple really
• 08:21complex medical problems, sort of
• 08:23more than billed at the
• 08:24time of original transfer.
• 08:26Intractable psychosocial challenges that make
• 08:28coherent long term planning really
• 08:30hard.
• 08:32Transferred out of our NICU
• 08:33to that same home ventilator
• 08:34unit just after the first
• 08:36birthday, and we had a
• 08:37big party at the first
• 08:38birthday.
• 08:39Has a feeding tube, not
• 08:40really on full feedings yet.
• 08:42Lots of meds, lots of
• 08:43consults, lots of services.
• 08:46The all the medical problems
• 08:48get better over months, but
• 08:49these psychosocial pair barriers to
• 08:52discharge remain kind of insurmountable.
• 08:55And this child goes home
• 08:57to the family after the
• 08:58second birthday party,
• 09:00decannulated
• 09:01on a nasal cannula,
• 09:03on less stuff, but, you
• 09:04know, still ten prescriptions with
• 09:05lots of discharge appointments.
• 09:08Comes back in about a
• 09:08week, but a short stay
• 09:10and goes back home and
• 09:10this child is still
• 09:13home. Over this case, by
• 09:14this time, I was sort
• 09:15of paying more attention to
• 09:16cases like this. There's collective
• 09:18hand wringing about absolutely everything,
• 09:21for months.
• 09:22There's ethics consults. There's we
• 09:24have a health care equity
• 09:25consult service. People call them.
• 09:27There's hospital business meetings. We
• 09:28now have a kind of
• 09:29hospital C suite type committee
• 09:31that just looks at our
• 09:32super long hospitalizations.
• 09:34There's moral distress rounds of
• 09:35various kinds.
• 09:39But there's also joy
• 09:40in this child's home with
• 09:41the family decannulated.
• 09:44So is this outcome good
• 09:45or bad? And what I
• 09:47would say is yes. Right?
• 09:48I mean, there there this
• 09:49is
• 09:50I don't know how to
• 09:51answer this in any other
• 09:52way.
• 09:53So I'm gonna step back
• 09:54aerially and think a little
• 09:55bit about, if you're a
• 09:56pediatrician, the kind of origin
• 09:58story you have with patients
• 09:59like this.
• 10:01If you've trained as a
• 10:02pediatric resident, you probably remember
• 10:05some story kind of like
• 10:06this. And maybe it wasn't
• 10:07three years, but, you know,
• 10:08I, stayed last night with
• 10:10a friend of mine from
• 10:11pediatric residency.
• 10:12And, you know, we graduated
• 10:13from residency twenty one years
• 10:15ago. And when I told
• 10:16her the topic, she told
• 10:17me the name of the
• 10:18patient that this invoked for
• 10:20her.
• 10:22And one of my really
• 10:24formative experiences was at the
• 10:25building that's pictured here. So
• 10:26I trained on the south
• 10:27side of Chicago, and this
• 10:29beautiful building was part of
• 10:30the Columbia exhibition at the
• 10:32turn of the century, the
• 10:33turn of the nineteenth to
• 10:34twentieth or twentieth to twenty
• 10:35first century, I guess,
• 10:36and had been a home
• 10:37for children with rheumatic fever
• 10:39that then got converted to
• 10:41a medical home for kids
• 10:42with chronic disease. But we
• 10:43would go there as residents
• 10:44and stay with kids who
• 10:45were there sometimes for months
• 10:47waiting for placement in some
• 10:48better long term facility. So
• 10:50these are patients that we
• 10:51knew as pediatric residencies, like
• 10:53really long term patients.
• 10:55And as a neonatologist and
• 10:56Doctor. Mercurio said, I'm a
• 10:57student now too. I spent
• 10:58a lot of time thinking
• 10:59about patients who are in
• 11:00the hospital for a long
• 11:02time.
• 11:02Part of this is in
• 11:03the NICU, if you're born
• 11:04at twenty two weeks, you're
• 11:05in the hospital for a
• 11:06long time just because you
• 11:07have to be.
• 11:08But also we are always
• 11:10full. And if you're an
• 11:11administrator in a children's hospital,
• 11:12you're always full and that's
• 11:14always a crisis.
• 11:16As a clinical ethics consultant,
• 11:18we now have frequent flyers.
• 11:21These are patients that we
• 11:22I get the page and
• 11:23I'm like, wait. I know
• 11:23this story. I've heard this
• 11:24before. We've already consulted on
• 11:26this patient. And, you know,
• 11:27the NICU for some people
• 11:28is the newborn ICU, but
• 11:29there's the other NICU, right,
• 11:30the neuro ICU. We also
• 11:32have long stay adult patients
• 11:33that we get consulted on
• 11:34over and over because they're
• 11:35in the hospital forever.
• 11:38And we're starting to think
• 11:39about this as a research
• 11:40lab.
• 11:41And so we've been talking
• 11:43about this in various forms.
• 11:44We all have our own
• 11:45take on it, but my
• 11:47collaborators, Beanie Meadow, who's a
• 11:48neonatologist with me, and Erica
• 11:49Andres, who's a PICU doc,
• 11:51and I have, like, worked
• 11:52on this and come up
• 11:54with our own kind of
• 11:55intentionally kind of neatly, neatly,
• 11:57neatly titles. And when we
• 11:58first started talking about this,
• 11:59I said, I don't care
• 12:00what we talk about, but
• 12:01the title is going to
• 12:01be, You Don't Have to
• 12:02Go Home, But You Can't
• 12:03Stay Here, because that is
• 12:04my dream to have a
• 12:04talk that's called this.
• 12:06And if you're going to
• 12:07go present a weird idea
• 12:08at a meeting and see
• 12:09how it is going to
• 12:10go, you do that at
• 12:11the American Society for Bioethics
• 12:12and Humanities.
• 12:14And that's where we started
• 12:15talking about this. But we're
• 12:17still at our phases of
• 12:18trying to take this from
• 12:19normative ethics work to empirical
• 12:21work and kind of gearing
• 12:22up to start studying this
• 12:23in a more like counting
• 12:24stuff
• 12:25kind of way. So here's
• 12:27what we're going to
• 12:28do. I'm going to try
• 12:29to impart the idea that
• 12:30these patients aren't all the
• 12:31same, and that there are
• 12:32different forces that lead to
• 12:34these patients being in the
• 12:35hospital for as long as
• 12:36they are.
• 12:38That there's more than one
• 12:39moral dimension to this. And
• 12:40there's a lot of different
• 12:41ethical things we have to
• 12:42think about.
• 12:44And I'm just trying to
• 12:45end with, you know, what
• 12:46should we be thinking about?
• 12:47What should we be studying?
• 12:48And then what? What do
• 12:49we do about patients like
• 12:50this?
• 12:52One thing that makes this
• 12:54really hard, I'm gonna talk
• 12:54in a minute about this
• 12:56population called the chronically critically
• 12:57ill. Chronic critical illness is
• 12:59not my idea. I didn't
• 13:00invent it and I wanna
• 13:01be clear that that's an
• 13:02area that's a focus of
• 13:03a lot of research.
• 13:05The area of super long
• 13:07hospitalization
• 13:08is infuriatingly
• 13:09not. And part of the
• 13:11reason I say that is
• 13:12when you try to figure
• 13:12out what defines a long
• 13:14hospitalization, you get like, more
• 13:16than twelve days,
• 13:18Right? And that doesn't have
• 13:19anything to do with what
• 13:20I'm trying to describe. And
• 13:21in this paper that I'll
• 13:22come back to the end
• 13:23that defines like a research
• 13:25agenda for kids with chronic
• 13:26critical illness.
• 13:27Nobody's really, really talking about
• 13:29like more than three months.
• 13:31And that's one study that
• 13:32talks about more than three
• 13:33months even.
• 13:35But this is a population
• 13:36that's been vexing people forever.
• 13:38You know, since the eighties,
• 13:39people have been thinking about
• 13:41what happens to these patients
• 13:42that stay in the hospital
• 13:43longer than we wanted.
• 13:45And for at least a
• 13:46decade, people have been starting
• 13:48to notice that these patients
• 13:50take up a lot of
• 13:51the bed
• 13:52bandwidth, if you can think
• 13:53about it that way. It's
• 13:54sort of they're taking up
• 13:55proportionally
• 13:56more and more of the
• 13:57bed days, which is how
• 13:59you think about how much
• 14:00of the pie something a
• 14:02hospital patient takes up.
• 14:05People are also starting to
• 14:06think about how this impacts
• 14:08different populations differently.
• 14:10So in a Canadian study
• 14:11of this, they looked at
• 14:12how many kids like this
• 14:12actually went home to their
• 14:14own families.
• 14:15And patients who were just
• 14:17separated from their families were
• 14:18more likely to be Aboriginal
• 14:19than other kids in the
• 14:20study.
• 14:22And their, you know, early
• 14:23days looked at, wow, these
• 14:25are a really small number
• 14:26of patients, but they take
• 14:27up a lot of our
• 14:27bed days and even more
• 14:28of our ventilator days.
• 14:30And this isn't just a
• 14:32child problem in the UK.
• 14:33This is a really interesting
• 14:34study out of the National
• 14:35Health Service
• 14:36that they were doing a
• 14:38look at could we reduce
• 14:39overall, like, median length of
• 14:41stay across our whole population
• 14:43of inpatients to free up
• 14:44beds? And they identified this
• 14:46tiny, tiny fraction of patients
• 14:47who were in the hospital
• 14:48more than a hundred days
• 14:50and
• 14:51discovered that if you took
• 14:52those out, you didn't move
• 14:54the median length of stay
• 14:55for the National Health Service
• 14:57at all.
• 14:58And the the idea here
• 14:59is if we're trying to
• 15:02lower length of stay, like
• 15:03free up beds, we could
• 15:04free up a lot of
• 15:05beds and targeting median length
• 15:07of stay isn't gonna do
• 15:08that in the same way
• 15:09that just looking at these
• 15:10patients specifically well.
• 15:14So chronic critical illness is
• 15:16a very specific thing. It's
• 15:17this figure is not to
• 15:18scale and it's also not
• 15:19my figure.
• 15:21But it's it's a subset
• 15:23of kids with special health
• 15:24care needs who are in
• 15:25a subset of set set
• 15:26of kids with medical complexity.
• 15:28And the gist of this
• 15:30is that these kids have,
• 15:33complex diseases, technology dependence, and
• 15:36they interact with the health
• 15:37care system in a completely
• 15:39different way a lot.
• 15:42So
• 15:43what are the practical dimensions
• 15:45of this?
• 15:47Sometimes it's that the body
• 15:48is imperfect. And these are
• 15:50patients who legitimately can't be
• 15:52cared for except in an
• 15:53acute care hospital, usually an
• 15:55ICU.
• 15:56But they seem to be
• 15:56able to do that indefinitely.
• 15:58So this is not patients
• 16:00who take a long time
• 16:01dying. That is a very
• 16:02different population of patients and
• 16:03that's not who I'm talking
• 16:04about. This isn't the futility
• 16:06dwindles.
• 16:07This is patients who they're
• 16:09they live like this.
• 16:12Sometimes it's that the system
• 16:13fails. So these are people
• 16:14who could, in theory, go
• 16:15home, but there's some sort
• 16:17of barrier to safe discharge.
• 16:18And, like, safe we'll get
• 16:20to this, but, like, safe
• 16:20can mean any number of
• 16:21things. But there's some obstacle
• 16:23to a theoretically achievable discharge.
• 16:27And sometimes consensus is elusive.
• 16:29There's something that might get
• 16:30this child home,
• 16:32but
• 16:33something like the parents don't
• 16:34want that thing.
• 16:36These are sort of paradigm.
• 16:37This is really oversimplified. But
• 16:39and, like, a lot of
• 16:41times, it's kind of a
• 16:42mishmash of these things, which
• 16:44makes it even harder because
• 16:45just untangling what is the
• 16:47barrier to discharge is really
• 16:48hard. Alright. Mark, I warned
• 16:50you about this, but so
• 16:51physical physical barriers. Right? So
• 16:53here's here's doctor Mercurio again.
• 16:55Right? And I think that
• 16:56everyone would agree that if
• 16:57you can see that That's
• 16:58my high school graduation. This
• 16:59is his high school graduation
• 17:01photo.
• 17:03And he also reminded me
• 17:04that this is before he'd
• 17:05had the,
• 17:07the
• 17:08burden of being the division
• 17:09director, like, voiced it upon
• 17:10him for a decade. But,
• 17:12I think everyone would argue
• 17:13that he has a neck.
• 17:15Right? And you can see
• 17:16his neck.
• 17:17Where's this kid's neck? Right
• 17:19now, this is a random
• 17:20healthy baby. There's nothing wrong
• 17:21with this kid. This kid
• 17:22doesn't need a tracheostomy.
• 17:24But the point is sometimes
• 17:25there are things like the
• 17:26baby needs a trach, but
• 17:27there's some geographic,
• 17:29geographic, like, medical, physical, like,
• 17:31thing. You can't do the
• 17:33trach for some reason. Probably
• 17:34not just that they like,
• 17:35babies can have trachs, but
• 17:36but for you you just
• 17:38can't do it.
• 17:40Sometimes there are real logistic
• 17:42barriers. So I live in,
• 17:44Michigan, so we have two
• 17:45peninsulas. Right? And, like, Yooper
• 17:46is the upper peninsula, UP.
• 17:49So you can use my
• 17:51so
• 17:52we're here. Here's Ann Arbor.
• 17:53Right? And here's like the
• 17:54way upper peninsula. That's like
• 17:56a ten to twelve hour
• 17:57drive when it's not snowing.
• 18:00And so or you, you
• 18:01know, you can drive to
• 18:03you can drive to Marquette.
• 18:04You can fly to Marquette,
• 18:05which is here, and you
• 18:05still have a six hour
• 18:06drive.
• 18:08Getting a child, you know,
• 18:10to Houghton
• 18:11with a tracheostomy and getting
• 18:13home nursing and, like, where's
• 18:14their closest hospital that can
• 18:15actually help them? I mean,
• 18:17these this is almost impossible.
• 18:19It can be done, but
• 18:20but real geographic, like, barriers
• 18:23to discharge. Or,
• 18:25so this is a picture
• 18:27of a trailer park, and
• 18:28I intentionally picked a picture
• 18:29of, like, a nice trailer
• 18:30park. Right? But, like, outfitting
• 18:32a trailer that someone doesn't
• 18:34own for what they need
• 18:35to safely have a home
• 18:36ventilator,
• 18:37that's there are huge barriers
• 18:40to doing that.
• 18:42And sometimes there are real
• 18:43barriers to consensus.
• 18:46Sometimes just what is the
• 18:48appropriate disposition? When is it
• 18:49the right time to go
• 18:50home? Where is the best
• 18:51place to go? It was
• 18:52really hard. So I don't
• 18:53know anything about this this
• 18:55baby.
• 18:56But if you look at
• 18:57this baby, there's a village
• 18:59around her taking care of
• 19:00her. And there's a lot
• 19:01of stuff and there's a
• 19:02lot of hands.
• 19:03And if you think about
• 19:04what this takes and this
• 19:05kid was kind of like
• 19:06thriving. Right? Like, you can
• 19:07imagine why a person would
• 19:08say, like, I don't know
• 19:09that I can replicate that
• 19:10at home. And I don't
• 19:11know that I want to
• 19:11try.
• 19:12This was an interesting story
• 19:14that we pulled out because
• 19:15this was, you know, twenty
• 19:15twenty four and, like, an
• 19:17NPR story
• 19:18about an eighteen year old
• 19:19who was stuck in the
• 19:20hospital for many, many months.
• 19:22And the issue was that
• 19:23the hospital wanted to send
• 19:24her to a facility. And
• 19:25the closest one was many
• 19:27hours from where her family
• 19:28lived,
• 19:29hours from her school, hours
• 19:31from her life. And she
• 19:32said, I don't want to
• 19:33be six hours from where
• 19:34my family is. I want
• 19:35and if that means I
• 19:36gotta stay in the hospital,
• 19:37you got to keep me
• 19:38here. And there was a
• 19:38lawsuit about this.
• 19:41Sometimes there are real disagreements
• 19:42about the goals of care
• 19:43too. We were talking about
• 19:43this over lunch a little
• 19:44bit that like,
• 19:46the you know, to say
• 19:47that, like, they just don't
• 19:48want the tracheostomy, there are
• 19:49really, like, good rational reasons
• 19:50to be really worried about
• 19:52getting a tracheostomy. Right? Like,
• 19:53the in home mortality from
• 19:55kids who go home with
• 19:56a tracheostomy is is high.
• 19:58And it's not always because
• 19:59of the thing that made
• 20:00the child need the tracheostomy.
• 20:02If you look at reasons
• 20:03patient with tracheostomies die, things
• 20:06like trachea accidents
• 20:07are one of the biggest
• 20:08reasons that that happens. So
• 20:10it's not entirely irrational
• 20:11to say, I don't want
• 20:12it. I wanna stay here
• 20:13until we don't need it
• 20:14anymore.
• 20:15Alright. So there are moral
• 20:16dimensions too, though. Right? Resources.
• 20:19How much is the discharge
• 20:20worth? Is it worth three
• 20:22years in the hospital?
• 20:24Does every patient have a
• 20:25same claim on that bed?
• 20:27So would this be a
• 20:27relevant question if we had
• 20:29infinite ICU beds? If
• 20:31that PICU could just grow
• 20:32indefinitely, would this be a
• 20:33discussion?
• 20:36And is hospital bioethics really
• 20:38the right arena, right? Is
• 20:39this a public health question?
• 20:40Is this about society and
• 20:41how we think about disability
• 20:43and how we think about
• 20:44the
• 20:46the value
• 20:47that we're gonna place on
• 20:48kids like this and what
• 20:49we're gonna invest in taking
• 20:50care of kids like this
• 20:51in the community? Or is
• 20:52it about something else? You
• 20:53know, Mark was saying, I
• 20:54got my, like, public policy
• 20:55degree and my ethics fellowship
• 20:56and then my NICU fellowship
• 20:58at the same time, so
• 20:58maybe it's about something else
• 20:59and just y'all can tell
• 21:00me what that is.
• 21:02But maybe it's about the
• 21:03same stuff it always is.
• 21:04Maybe it's about parental authority
• 21:06and best interest. Maybe it's
• 21:07about weighing benefit and harm.
• 21:09Maybe it's about prognostic prognostic
• 21:11uncertainty, and maybe it's about
• 21:12reasonable people disagreeing. This is
• 21:13what it always is in
• 21:15pediatric ethics.
• 21:17So when you think about
• 21:18these resource questions, though, so
• 21:21this is where we got
• 21:22to like, you don't have
• 21:22to go home, but you
• 21:23can't stay here and you
• 21:24do you, but you can't
• 21:24have my hospital bed. Right?
• 21:26That's one of the potential
• 21:27ways you can think about
• 21:28this. And this is entirely
• 21:30about pie and who gets
• 21:31to eat it.
• 21:32Right? And long hospital stays
• 21:35take up a lot of
• 21:36pie, whether that pie is
• 21:37beds or hospital dollars, health
• 21:39care dollars.
• 21:41So we can think about
• 21:42these kids like they don't
• 21:43really need an acute care
• 21:45hospital. And so can these
• 21:46patients lay claim on acute
• 21:48care,
• 21:49beds? And what I would
• 21:49ask is relative to what,
• 21:51though,
• 21:52is that relative to going
• 21:53somewhere else? Is that relative
• 21:55to dying instead?
• 21:57And I would challenge that
• 21:58we don't have any framework
• 22:00to rationally have that conversation,
• 22:02you know, other than like
• 22:03in something like in the,
• 22:05you know, public health crisis.
• 22:06We know a little bit
• 22:06about those now. We don't
• 22:08have any framework for that.
• 22:09And kind of the same
• 22:10thing about money. Right? Is
• 22:11there
• 22:13is a does a hospitalization
• 22:15just become at some point
• 22:16in an absolute way too
• 22:18expensive?
• 22:19Right? And I would again
• 22:20say relative to what? And
• 22:22what's the framework that we
• 22:23have to talk about that?
• 22:28The right arena question is
• 22:29I think also really interesting.
• 22:31I had to show you
• 22:31at least one paper I'd
• 22:32written myself.
• 22:33And so one of the
• 22:34things we talked about a
• 22:35lot during the pandemic was
• 22:36about bedside rationing. And I
• 22:38get a lot of ethics
• 22:39consults
• 22:40about
• 22:40isn't this patient eating too
• 22:42much pie? To which my
• 22:43answer is always that's not
• 22:45what a health care ethics
• 22:46consultation is. Right? We don't
• 22:47ration at the bedside for
• 22:49the simple person that you
• 22:50taking care of your for
• 22:51the simple reason that you
• 22:52taking care of your patient
• 22:54can't do the big picture
• 22:55at the same time that
• 22:56you do the small picture.
• 22:58And but there is a
• 23:00bigger picture and someone has
• 23:02to look at it.
• 23:03And when you look at
• 23:04the literature about children with
• 23:06medical complexity and the chronically
• 23:08critically ill, They're mostly about
• 23:10health systems and the way
• 23:11we take these care of
• 23:12these pictures, these babies in
• 23:14the big picture, not about
• 23:15how we do that as
• 23:16individuals.
• 23:17And I think one sign
• 23:19that we have a real
• 23:20systems problem is that when
• 23:21you look at programs that
• 23:22are out there at children's
• 23:23hospitals that are built to
• 23:24support families
• 23:26who have children like this,
• 23:27and programs actually whose primary
• 23:29goal is often to keep
• 23:30these kids out of the
• 23:31hospital, which they do fairly
• 23:32successfully,
• 23:33they're almost always philanthropically funded,
• 23:35which which means no one
• 23:36else is paying for them.
• 23:37Right? And that it you
• 23:38have to go to donors
• 23:39to invest in keeping these
• 23:41kids out of hospitals, which
• 23:42gives you a sense of
• 23:43what our societal priorities are.
• 23:47And then there's the stuff
• 23:48that I told you it's
• 23:49always about. Right? Who determines
• 23:51when someone is ready to
• 23:52go home? That's in some
• 23:53sense a parental authority question
• 23:55is what people want relevant
• 23:57here? Is a parent's preference
• 23:58relevant?
• 24:00Who decides where a child
• 24:01is better off? And how
• 24:03do you weigh things like
• 24:04the risk of nosocomial infection
• 24:06versus the risk of a
• 24:07trach accident in a home?
• 24:08That's kind of an oranges
• 24:09and apples thing.
• 24:11How sure do we need
• 24:12to be that that child
• 24:13will eventually go home?
• 24:15And what if parents don't
• 24:16agree with our certainty about
• 24:18that? What if they say,
• 24:18well, look, maybe it's a
• 24:19really low chance, but I'm
• 24:20gonna take it?
• 24:22And are some of these
• 24:23impasses
• 24:24just inevitable?
• 24:25Is there a utilitarian
• 24:27final arbiter in that impasse
• 24:28who just gets to decide
• 24:29you don't get to stay
• 24:30here for three years?
• 24:33So I just went through
• 24:34this whole host of things
• 24:35that I think that this
• 24:36is potentially about.
• 24:38Right? There are a lot
• 24:39of different
• 24:41different things. And the point
• 24:42of this is, I hope
• 24:43you're already convinced of this,
• 24:44but that, like, there's a
• 24:46lot of ethics in these
• 24:48hospitalizations.
• 24:49But there's one thing that
• 24:50I think none of this
• 24:51has talked about.
• 24:53And I think that that's
• 24:54that we also have this
• 24:56collective,
• 24:57tacitly, but firmly held belief
• 24:58that a good life is
• 24:59lived at home
• 25:00and that there's a moral
• 25:01imperative to get kids out
• 25:03of the hospital as a
• 25:04distinct existential good.
• 25:06And that's why I've shown
• 25:07you this picture that I
• 25:07stole from some children's hospital
• 25:09website of this, like, very
• 25:10harmonious, appealing looking picture of
• 25:12a mother taking care of
• 25:13her child with a tracheostomy
• 25:15and what is clearly a
• 25:16home. Right? That this is
• 25:17what people are supposed to
• 25:18want and that it's achievable.
• 25:22So what's inherently bad about
• 25:24living in the hospital?
• 25:25So relative to what? Again,
• 25:27what's the comparison here?
• 25:29Bad versus living at home,
• 25:31bad versus dying in the
• 25:32hospital. What's the comparison?
• 25:34And what if living at
• 25:35the hospital is better than
• 25:37living at home for some
• 25:38people?
• 25:39And who decides
• 25:40if dying is the least
• 25:42worst outcome among the things
• 25:44that are available to you?
• 25:45And is that dying in
• 25:46the hospital? Is that going
• 25:47home with hospice?
• 25:49I think that when we
• 25:51complain about these long hospitalizations
• 25:53without really getting into this
• 25:54we're ignoring how complicated this
• 25:56problem is.
• 25:58So when we think about
• 25:59what might be inherently bad
• 26:00or good about living in
• 26:01the hospital, there's a lot
• 26:02of different stakeholders here. I
• 26:03heard recently that stakeholders like
• 26:05a bad word that I'm
• 26:06not supposed to use, but
• 26:06I don't know what the
• 26:07alternative is.
• 26:09So for the patient, for
• 26:10the family, for the hospital,
• 26:11for the unit,
• 26:12for the healthcare professionals, I
• 26:14think some of these hospitalizations
• 26:15do take a specific toll
• 26:17on individual
• 26:19providers, particularly first line healthcare
• 26:21providers, like bedside providers, like
• 26:23nurses and RTs.
• 26:25So what's the bad stuff
• 26:27about living in the hospital?
• 26:28I mean, this has actually
• 26:28been studied a little. People
• 26:29have gone and really interviewed
• 26:30people on, like, what's bad
• 26:31about living in the hospital?
• 26:33But you get exposed to
• 26:35unequivocally
• 26:36bad things like multi resistant,
• 26:38multi drug resistant organisms.
• 26:40In preparing for this, I
• 26:41read that, you know, medical
• 26:43error, there's like a dose
• 26:44response relationship. The longer you're
• 26:46in the hospital, the more
• 26:47errors you're going to get
• 26:48exposed to just by virtue
• 26:49of being there.
• 26:50There's noise. You get like,
• 26:52like ICU hysteria, right? You're
• 26:54not exposed to normal light
• 26:55cycling.
• 26:57You don't get a normal
• 26:59childhood emotional experience. You don't
• 27:02get normal development. You can
• 27:03regress. You don't get to
• 27:04move around. You're sort of
• 27:05not free in the way
• 27:06that kids are supposed to
• 27:07be free. You don't interact
• 27:09with your peers. You don't
• 27:10get too attached to your
• 27:11family in the same way.
• 27:14And there are ways that
• 27:15I'll talk about in a
• 27:16minute that the care model,
• 27:17if you live in the
• 27:18ICU, is really probably not
• 27:20the care model that you
• 27:22need.
• 27:24On the other hand, you're
• 27:26safe. Right? You have a
• 27:27huge pool of care providers
• 27:28that take care of you.
• 27:30Potentially, there's all this stuff
• 27:31that's easier for you to
• 27:32get there than it is
• 27:33for you to get when
• 27:34you live at the far
• 27:35reaches of the Upper Peninsula,
• 27:36for example. But even in
• 27:38a big city, if your
• 27:38parents don't have a car,
• 27:41You know, OT, PT, speech,
• 27:43all of these things are
• 27:44there for you.
• 27:46You have access to all
• 27:47your specialists that can come
• 27:48when you need them. You
• 27:48can get all your labs.
• 27:49You can get all your
• 27:50tests. I would argue
• 27:51that there are some good
• 27:53things for you about living
• 27:54in the hospital.
• 27:56So what about for parents,
• 27:57right? I think there are
• 27:58some really bad things for
• 27:59parents about having their kid
• 28:00live in the hospital. They're
• 28:02separated. People are really starting
• 28:03to get things like the
• 28:05indirect cost of having a
• 28:07hospitalized child, both in terms
• 28:08of things like that the
• 28:09insurance doesn't cover, but also
• 28:11things like parking, right, or
• 28:13like eating at the expensive
• 28:14cafeteria.
• 28:16What it does to your
• 28:17other kids, the stressors on
• 28:18you,
• 28:19the last, the loss of
• 28:21a normal kind of natural
• 28:22parenting experience, the fishbowl effect,
• 28:25people are looking at you
• 28:27all the time. And you
• 28:28kind of can't talk about
• 28:29this without talking about this
• 28:30really
• 28:31poignant essay that my friend
• 28:33and colleague Annie Jeanvier wrote.
• 28:34She's a neonatal ethicist who
• 28:35had a twenty five weeker.
• 28:37And she talks about this
• 28:38pressure she felt to go
• 28:40visit on days that she
• 28:41didn't want to go because
• 28:42she felt like she had
• 28:43to go show that she
• 28:44was a good parent.
• 28:47But
• 28:48we see hospitalization for some
• 28:50of our families be their
• 28:51route to housing security and
• 28:53food
• 28:54and help and respite care
• 28:56and community. You know, we
• 28:57see people who find
• 28:58lifelong friends who understand their
• 29:00challenges living at the Ronald
• 29:02McDonald House. Right? It's not
• 29:03all bad.
• 29:06And when they go home,
• 29:08the supports that are supposed
• 29:09to be there aren't there.
• 29:10Right? And there are studies
• 29:11that show that all these
• 29:12people from your church and
• 29:13your community that say they're
• 29:14gonna be with you, all
• 29:15of that's gone in a
• 29:16year. And the home nursing
• 29:17you were supposed to get
• 29:18doesn't come. So you go
• 29:19home and you're alone.
• 29:22Now for the hospital, there's
• 29:23lots of downsides to this,
• 29:24right? We're full all the
• 29:25time.
• 29:26There's a resource strain. And
• 29:27I have a friend who
• 29:28talks about this in terms
• 29:29of time, money and feelings.
• 29:31Right? And you put a
• 29:32lot into these patients. There's
• 29:34this tacit triage that you're
• 29:35doing all the time because
• 29:36you have the chronic patient
• 29:37and you get paired with,
• 29:38like you're the nurse, you
• 29:39get paired with the sickest
• 29:40patient in the ICU, and
• 29:42you're constantly trying to decide
• 29:43where you put your energy
• 29:44and that burns you out
• 29:45and burned out nurses leave
• 29:47the profession.
• 29:49Right?
• 29:50And it's a care model
• 29:51mismatch. This is not what
• 29:53acute care children's hospitals are
• 29:54built to do.
• 29:57You kind of have to
• 29:58really hunt for good sides
• 30:00of this for the hospital,
• 30:01right? Maybe there's some joy,
• 30:02maybe there's some emotional reward.
• 30:05These hospitalizations are generally kind
• 30:06of money losers. But some
• 30:08of these patients in the
• 30:08long run, they have lots
• 30:09of surgeries, surgeries make money,
• 30:11to save lives. They're scandalous
• 30:12sometimes and like sometimes it's
• 30:14good, right? I don't want
• 30:14to blow it off.
• 30:15All right. So there's a
• 30:17population of children who live
• 30:19in the hospital competing for
• 30:20acute care beds and attention
• 30:21with no good alternatives. I
• 30:23think everybody
• 30:24sold on that. But so
• 30:25now what?
• 30:27So what are the long
• 30:28term fixes? Right? So there's
• 30:30the really distant
• 30:32Mount Everest kind of hard
• 30:33stuff,
• 30:34which is getting the resources
• 30:36that these children need to
• 30:37put them in a better
• 30:38environment for them.
• 30:41So like long term extended
• 30:43care, like adults have something
• 30:44called an LTAC, like a
• 30:45long term acute care center.
• 30:47Like, we don't really have
• 30:48those for kids in most
• 30:49states.
• 30:50Respite care, like, in the
• 30:51UK, at least, I think
• 30:53there used to be, like,
• 30:54if you took care of
• 30:55a child like this at
• 30:56home, you could take them
• 30:56somewhere to take get a
• 30:58break
• 30:59from doing this.
• 31:00And, you know, a lot
• 31:01of the chronic critical illness
• 31:03literature talks about better complex
• 31:05primary care and medical home
• 31:06models so that the world
• 31:07is better for kids like
• 31:09this.
• 31:11So if you think about
• 31:12case one, though, right, that
• 31:13that first case that I
• 31:14told you about about the
• 31:15child who just like codes
• 31:16all the time.
• 31:18So here's the model I
• 31:19showed you. Right? And I
• 31:20think, though, there's a subset
• 31:22of this chronic critical illness
• 31:23with people who really are,
• 31:25like, constantly unstable.
• 31:28And there's a set of
• 31:28patients who really do live
• 31:30in this liminal space where
• 31:31they're too sick or unstable
• 31:33to go home, but they're
• 31:34not dying.
• 31:35They're too chronic for an
• 31:36acute care hospital. And this
• 31:38is where we've talked in
• 31:38our group about this need
• 31:39for, like, the baby LTCH
• 31:40that nobody really has,
• 31:43that can take care of
• 31:44a child like this in
• 31:45an appropriate setting,
• 31:46with better mechanisms to support
• 31:48continuity, and I'll talk more
• 31:49about that in a minute,
• 31:50that aren't in competition for
• 31:51acute care beds. And I
• 31:53put an asterisk
• 31:54beside this because kids like
• 31:55this truthfully do tend to
• 31:58toggle back and forth between
• 31:59institutions. It's not really true
• 32:01that they just stay there.
• 32:02But I think there,
• 32:04you could build a place
• 32:06for like someone like the
• 32:07patient, the patient in case
• 32:09one.
• 32:10And maybe sometimes we really
• 32:12do kick the can down
• 32:13the road and just fail
• 32:14to put together a coherent
• 32:15long term plan. We don't
• 32:15do that on purpose. This
• 32:17is not a bad intentions
• 32:18thing. Usually in ethics, I
• 32:19mean, like intentions are good.
• 32:21But it's just the wrong
• 32:23care model.
• 32:24And so Erica, one of
• 32:26my partners in this, Erica
• 32:27Andrus, talks about there's more
• 32:28than one kind of continuity
• 32:30problem that we have.
• 32:32It's informational continuity. How do
• 32:34we hand off relationship
• 32:37information?
• 32:38Shift to shift, week to
• 32:39week, month to month. How
• 32:40do we get that information
• 32:42into the right brains in
• 32:43the right way?
• 32:44How do we hand off
• 32:45plans, that management continuity? How
• 32:47do we agree on how
• 32:48we're going to take care
• 32:48of this patient?
• 32:50Relational continuity. How do you
• 32:51give these patients that sort
• 32:52of long term
• 32:54care relationship that they need?
• 32:55And this figure, I don't
• 32:56expect you to read it
• 32:57all, but this this is
• 32:58a really complicated patient to
• 33:00take care of in a
• 33:01setting where, like, most ICUs,
• 33:03the attending changes every week.
• 33:05And for the record, like
• 33:05as the division director, I
• 33:06don't think that we should
• 33:07be on service for a
• 33:08month, but,
• 33:09but it doesn't really work.
• 33:12And I do think that
• 33:13there are some shorter term
• 33:14fixes or we could at
• 33:16least
• 33:16try. And, and I do
• 33:18think this is a little
• 33:19bit still the case of
• 33:21the nothing we've tried isn't
• 33:22working and we're spending a
• 33:23lot of time admiring this
• 33:25problem.
• 33:27These are not low hanging
• 33:28fruit though. This this is
• 33:30still
• 33:31hard, gnarly stuff to get
• 33:32at. But thinking about
• 33:35what is the way you
• 33:36get a complex care coordination?
• 33:38How do we communicate about
• 33:39these patients?
• 33:40I don't even think we're
• 33:41just talking about implicit bias
• 33:42here. I think there's explicit
• 33:43bias here. I mean, I
• 33:44think there's biases we know
• 33:45we have in the way
• 33:46we take care of these
• 33:46patients.
• 33:47And decision support is a
• 33:49thing that we know a
• 33:50lot about abstractly that we
• 33:51have not brought very effectively
• 33:53into actual hospitals to do
• 33:56it. And people are starting
• 33:57to write about this, both
• 33:58in the adult world and
• 33:59in the pediatric world, about
• 34:01how do you do better
• 34:02when these kids come into
• 34:03the hospital and provide the
• 34:05kind of interventions that they
• 34:06need.
• 34:09We could think about being
• 34:11more consistent
• 34:12in the way that we
• 34:13apply care for these patients,
• 34:15both to reduce that maddening
• 34:16odyssey of nobody agrees on
• 34:18whether or not we should
• 34:18do the trach. We talked
• 34:19about this at lunch, too.
• 34:21And potentially to make that
• 34:23hospitalization more efficient and potentially
• 34:25shorter. Right? So I just
• 34:26picked here, I tried to
• 34:27say, does anyone know when
• 34:28you should do a tracheostomy
• 34:30for a premature baby with
• 34:32bronchopulmonary dysplasia? And the answer
• 34:34is no. Right?
• 34:36People have attempted to kind
• 34:38of get at this in
• 34:40other
• 34:41similarly
• 34:42messy spaces.
• 34:44So this is the multi
• 34:45organization statement that looked at
• 34:47how you resolve kind of
• 34:48intractable disputes about,
• 34:52potentially non beneficial treatment, right,
• 34:53which is not these patients.
• 34:54But the idea is
• 34:56even the stickiest
• 34:57problems
• 34:58do lend themselves to
• 35:01guidelines.
• 35:02Right? And we could probably
• 35:03do better to do that.
• 35:07Where I'm less sure that
• 35:08we're at all ready to
• 35:10go
• 35:11is like,
• 35:12could we at the front
• 35:13end say no?
• 35:14Right?
• 35:15This is a sort of
• 35:16tweaked version of that that
• 35:18figure I showed you earlier
• 35:19about, like, who eats the
• 35:19pie?
• 35:22Other than in a true
• 35:23public health crisis, and we
• 35:24know we've just had one,
• 35:25we got we did do
• 35:26this,
• 35:28to say, like, you deserve
• 35:29the bad and you don't.
• 35:32I don't think we're ready
• 35:34to do that for this
• 35:34population when we haven't showed
• 35:36that we're ready to do
• 35:36that for any other population,
• 35:40when we don't have anywhere
• 35:41else for this patient to
• 35:42go. So what we'd really
• 35:43be saying is
• 35:45our algorithm predicts that you're
• 35:46still gonna be here in
• 35:47two years, so you don't
• 35:48get to live. And I
• 35:50don't think that that that's
• 35:51where we are.
• 35:53And similarly,
• 35:56I don't think that we
• 35:56have the collective will to
• 35:58cut people off from their
• 35:59health care in a coherent,
• 36:00transparent, and systematically applied way,
• 36:02which isn't to say that
• 36:03I don't think people die
• 36:05because the health care system
• 36:06won't pay for them. I
• 36:06think that happens all the
• 36:07time, but not in the
• 36:08light of day.
• 36:10And, again, I don't
• 36:12think in the US, we
• 36:13are ready to say this
• 36:15hospitalization. You have spent as
• 36:16much as we're gonna spend
• 36:17on this hospitalization.
• 36:18You have to leave even
• 36:19if there's nowhere for you
• 36:20to go. Now, other health
• 36:22systems in other countries
• 36:23do this kind of, but
• 36:25we haven't done that coherently
• 36:27openly in this country.
• 36:31And society really does fail.
• 36:32Some patients who could be
• 36:33home or housed if the
• 36:35resources were there. And that
• 36:36was my second case. Like,
• 36:36this is a patient who,
• 36:38like, if medical foster care
• 36:40was an actual
• 36:41thing, that patient could have
• 36:42gone home.
• 36:44But at least in my
• 36:45state,
• 36:46it's a it's a medical
• 36:47foster care is an idea.
• 36:49And what medical foster care
• 36:51actually becomes is
• 36:53we call that patient's mom
• 36:55a bad mom for not
• 36:56being able to mobilize the
• 36:58no resources that she has
• 36:59to take care of her
• 37:00child, and we call CPS
• 37:01and forcibly remove that child.
• 37:02And that is not medical
• 37:03foster care. That is something
• 37:04else entirely.
• 37:06And we don't have some
• 37:07states have great medical long
• 37:08term facilities,
• 37:10for kids like this. My
• 37:11state doesn't. Right? And so
• 37:14this is we're not gonna
• 37:15solve this at the hospital
• 37:16level. This is a policy
• 37:17level problem. And, again, this
• 37:18is Mount Everest.
• 37:20But
• 37:22but we're failing to to
• 37:24to come up with an
• 37:25alternative to the three hundred
• 37:26day hospitalization for some of
• 37:27these kids.
• 37:30So now what?
• 37:31So I told you about
• 37:32this paper,
• 37:33which was this, this, these
• 37:34are kind of a Renee
• 37:35Boss and Miriam Shapiro are
• 37:36really kind of leading the
• 37:37efforts to define this. But
• 37:39they're looking at this from
• 37:39a population level of who
• 37:41are children with chronic critical
• 37:43illness and how do we
• 37:44decide,
• 37:45define
• 37:46a research
• 37:47agenda for those kids.
• 37:49So if you're interested in
• 37:50this, I mean, they they
• 37:51they're they've written a road
• 37:52map for, like, what to
• 37:53study.
• 37:54There's nothing wrong with this.
• 37:56But I also think we
• 37:57need to do this. I
• 37:58think that we need to
• 37:59look at this
• 38:01from a defining these hospitalizations
• 38:03in a more coherent way
• 38:04to study these as hospitalizations.
• 38:07So get past you were
• 38:08in the PICU for fourteen
• 38:10days
• 38:11and really think about this
• 38:12as to
• 38:14are we measuring these hospitalizations
• 38:16in days, weeks, months, years?
• 38:19Can we wrap our heads
• 38:20around who these patients are?
• 38:22What are the outcomes that
• 38:24we're interested in? And what
• 38:25does that mean?
• 38:27And I think that, you
• 38:28know, I was mentored by
• 38:29Bill Meadow,
• 38:30who's
• 38:31kind of revolutionary insight at
• 38:33the time was
• 38:34when you don't know what
• 38:36to do about an ethically
• 38:37vexing problem, you start by
• 38:39counting stuff. And we haven't
• 38:40even really started to count
• 38:42this yet. And I think
• 38:43we really need to.
• 38:45So I'm gonna
• 38:47summarize.
• 38:48I think, am I where
• 38:48you wanted me to be?
• 38:49I think I am.
• 38:51So a small but important
• 38:53population of medically complex children
• 38:55lives in acute care hospitals
• 38:56in the US and around
• 38:57the world in a system
• 38:58that fails them and everybody
• 39:00else. It's not just hurting
• 39:01them.
• 39:03There's a care model and
• 39:04resource mismatch.
• 39:06There's no available and appropriate
• 39:08resource allocation framework that's gonna
• 39:10triage us out of this.
• 39:14And there's this unrealistic
• 39:15monolithic expectation that going home
• 39:18is everybody's North Star.
• 39:20And to bring this back
• 39:21to ethics, that's a parental
• 39:22authority problem. That's a best
• 39:24interest problem. We don't know
• 39:25how to try to force
• 39:26everybody to want the same,
• 39:28how not to force everybody
• 39:29to want the same thing.
• 39:31There's limited resources
• 39:33and will for things that
• 39:35could help address challenges in
• 39:36the short term. And those
• 39:37aren't fast, easy, or cheap,
• 39:39but there's even less for
• 39:40the long term. And I've
• 39:40said it now, I think
• 39:41the third time, that's Mount
• 39:42Everest.
• 39:44So that's what I'm gonna
• 39:45say about that. That's the
• 39:46living roof of my children's
• 39:47hospital, which I think is
• 39:47pretty cool.
• 39:49I wanna acknowledge Erica and
• 39:50Beanie who have been my,
• 39:51like, thought
• 39:52kind of,
• 39:53partners in crime in this.
• 39:54That's my email address if
• 39:55you're interested in this and
• 39:56wanna get in on it.
• 39:58And I'm gonna stop there.
• 39:59And hopefully, you're gonna ask
• 40:00me hard questions that I
• 40:01can't answer because then I've
• 40:02done it right.
• 40:09Yeah. I'm gonna I'm gonna
• 40:10sit and take the second
• 40:11bottle of water. Yeah. Well,
• 40:12if you could sit, I'm
• 40:13gonna give you one of
• 40:13these to take a minute.
• 40:14Okay.
• 40:15There you go.
• 40:17There you go.
• 40:19Alright. Well, that was pretty
• 40:21depressing.
• 40:23But that's alright because, I
• 40:25mean,
• 40:26those who work in the
• 40:27field are not shocked or
• 40:28depressed,
• 40:29by this because,
• 40:31we're well aware of it.
• 40:32This is a this is
• 40:33for those of you who
• 40:33don't know, for the students
• 40:35here, this is not,
• 40:37this is a problem here
• 40:39as well.
• 40:42I I guess that I'll
• 40:43take the first question while
• 40:44you guys think of your
• 40:45questions.
• 40:46One of the things that
• 40:47occurs to me
• 40:49is that and and when
• 40:50you mentioned Bill Meadow, I
• 40:51I was reminded of a
• 40:52paper that Bill wrote years
• 40:53ago, which you may come
• 40:55to mind for you as
• 40:55well. You might have been
• 40:56involved in. In fact, it
• 40:57was a study done at
• 40:58University of Chicago years ago.
• 41:00When we talk about these
• 41:01kids, we could also
• 41:03and you alluded this early
• 41:04in the talk,
• 41:05categorize them broadly. Right? And
• 41:07say, these are the kids
• 41:08who we think this kid's
• 41:09never gonna get out of
• 41:10here alive. And these are
• 41:11the kids who we think,
• 41:12you know what? If we
• 41:12really work at this for
• 41:13a long, long time, this
• 41:15kid's relatively stable. We just
• 41:16gotta eventually find a way
• 41:17to get this kid someplace
• 41:18where he can be on
• 41:19the ventilator, you know, and
• 41:20get the kind of care
• 41:21he needs.
• 41:23One of the things that
• 41:24Bill showed years ago was
• 41:25we're really bad at figuring
• 41:26out who those kids are
• 41:27who are not gonna get
• 41:28out of here alive, at
• 41:29least in neonatology.
• 41:31But it's a separate thing,
• 41:33I guess, what what I'm
• 41:34thinking, that the staff becomes
• 41:36very distressed
• 41:38by kids who were in
• 41:39the in the in the
• 41:40ICU for a very long
• 41:41period of time when people
• 41:42think that this is never
• 41:43gonna have a happy ending.
• 41:44Now you're you made the
• 41:45point with your examples that
• 41:47sometimes there is a happy
• 41:48ending.
• 41:49Is there a way when
• 41:50we think about this to
• 41:51try and divide these up
• 41:53into two different groups in
• 41:54our mind, or is that
• 41:55gonna just make things worse?
• 41:58Well,
• 41:59is this I don't know.
• 42:04Tap it. It might be
• 42:05on.
• 42:07Nope.
• 42:08Am I on? There you
• 42:09go. Okay. It's on.
• 42:12Sort of.
• 42:13I'm not in this. I'm
• 42:15not thinking about patients
• 42:17who have a condition where
• 42:19from the get go, we're
• 42:20saying,
• 42:21this is likely
• 42:22not a condition that you
• 42:24survive. I think that's a
• 42:25sort of different entity.
• 42:27These are kids that you
• 42:29really thought you were gonna
• 42:30get home.
• 42:32Right? And I, and I
• 42:32think that the idea is
• 42:34it's gonna be long and
• 42:35it's gonna be hard,
• 42:37but everyone has sort of
• 42:39assumed
• 42:40that there is some way
• 42:41that this gets better and
• 42:42you go home.
• 42:44Now,
• 42:45like my first case, you'd
• 42:46think like how many codes
• 42:47is this gonna take for
• 42:48us to adjust that
• 42:50that assumption? But the idea
• 42:51is this is somehow with
• 42:52time reversible.
• 42:55Right? And so this is
• 42:56one of the things about
• 42:57kids with trachs, right, is
• 42:58that a lot of them
• 42:58decalate. A lot of them
• 42:59don't need these ventilators forever.
• 43:01So I think that you
• 43:03so so I guess to
• 43:04try to answer your question,
• 43:05I think you have to
• 43:05start as what's the primary
• 43:07condition, and is there something
• 43:08here that gets better
• 43:10if you can write out
• 43:11the initial hard part?
• 43:13So maybe that's what it
• 43:13is. The defining thing is,
• 43:15is there some aspect of
• 43:16this that gets better with
• 43:17time?
• 43:19Yes, please. Wait. Give us
• 43:21one second till,
• 43:22we get the microphone to
• 43:23you.
• 43:28That was, that was really
• 43:29wonderful. You have my mind
• 43:30spinning, though, and my head's
• 43:31spinning, and I think that
• 43:33was your your aim. I'm
• 43:35Larry Vitilano,
• 43:36a long, long time,
• 43:38pediatric psychologist here. And,
• 43:41my question is, on the
• 43:42other side, thinking about what
• 43:44parents really want for their
• 43:45kids,
• 43:46for a second. And and
• 43:48if, you know, I always
• 43:49assume that in their own
• 43:50ways, they want what's best
• 43:52for their kids. We may
• 43:53not agree with it, but
• 43:54it's it's what they
• 43:56want. And can do you
• 43:57do is it useful to
• 43:58think about can we give
• 44:00parents more options,
• 44:03for them to choose on
• 44:04choose from a home or
• 44:06institutional,
• 44:08you know, I don't know,
• 44:09some kind of live in
• 44:10paraprofessionals.
• 44:12You know, I know that
• 44:14a lot of cultures do
• 44:14that. They they they train
• 44:16someone who then lives with
• 44:17them.
• 44:19What's your thoughts about
• 44:21giving parents more options, or
• 44:22should we just stay with
• 44:24what's the medically soundest
• 44:27option in our majority opinion?
• 44:30Well, so I think that
• 44:31that is there's there's a
• 44:32lot in that question.
• 44:35The least satisfying part is
• 44:37you'd like to give parents
• 44:38all the options that you
• 44:39have. And I think you
• 44:40have a moral obligation to
• 44:41do that. I think the
• 44:42reality is depending on where
• 44:44you live,
• 44:45sometimes you really don't have
• 44:47that many.
• 44:48Right? And so things like
• 44:49medical foster care, which is
• 44:51this sort of theoretical unicorn
• 44:53that doesn't really exist,
• 44:56where I think
• 44:58I am gonna get to
• 45:00use an extra slide. We
• 45:01had this big debate about
• 45:01whether I get to use
• 45:02an extra slide. Alright. It's
• 45:04really exciting.
• 45:06Because I wanted to talk
• 45:07about this a little bit.
• 45:08I think that
• 45:10what is,
• 45:15this one. What is really
• 45:16hard
• 45:17is that
• 45:19when you think about options,
• 45:21is this gets really gray
• 45:23really fast in these kinds
• 45:24of situations when you're trying
• 45:25to engage parents
• 45:27because our whole concept
• 45:29of what it means to
• 45:30be ready for discharge and
• 45:31what a safe discharge
• 45:33means
• 45:34is really a square peg
• 45:36in a round hole thing.
• 45:36And that it's not built
• 45:38around this kind of kid.
• 45:40And when you're thinking about
• 45:41how parents are going to
• 45:42weigh
• 45:44different options,
• 45:45they're not comparing opposite oranges,
• 45:47right? They're really different kinds
• 45:48of outcomes.
• 45:49And so
• 45:52it takes a really advanced
• 45:53kind of communication
• 45:54skill set and a lot
• 45:55of time and a lot
• 45:56of encounters. And that's, that's
• 45:58why I talked about decision
• 45:59support a little bit. I
• 46:01think walking parents through that
• 46:02is is hard because nothing
• 46:04that we have in the
• 46:06hospital, none of our tools
• 46:07are built for these kinds
• 46:09of decisions. And also this
• 46:11idea of, like, are you
• 46:12going to achieve the ideal
• 46:13discharge? You talk about the
• 46:14paraprofessional
• 46:15thing.
• 46:17A lot of times, a
• 46:18lot, in the times that
• 46:19I've seen some of these
• 46:20discharge,
• 46:21we do move the goalposts
• 46:23over time based on sort
• 46:24of what's seeming achievable. So,
• 46:26like, I'll give you an
• 46:27example of that. In our
• 46:28HomeVent program, we say you
• 46:29have to have two trained
• 46:31providers.
• 46:32Someone has to like, providers
• 46:33meaning parents, you know, who
• 46:35are or parent equivalents who
• 46:36are one of them has
• 46:38to be trained up on
• 46:40eight million things that they
• 46:41have to be able to
• 46:42do and demonstrate
• 46:44competence in doing. And one
• 46:45of them has to be
• 46:46home with that child
• 46:47twenty four hours a day
• 46:49to provide that, like, awake
• 46:52to tend to the digging
• 46:53and the bells and the
• 46:54things and the emergencies with
• 46:55the thing.
• 46:56And then maybe they can
• 46:58get home nursing and maybe
• 46:59they can't.
• 47:00Right? And
• 47:02sometimes you really don't have
• 47:03that second person.
• 47:06And at some point, sometimes
• 47:07we say,
• 47:08we're going to let you
• 47:09do this without the second
• 47:11person.
• 47:12And it's not our favorite
• 47:13option and it's not the
• 47:14best option, but
• 47:16it's the option.
• 47:18And if the alternative, like
• 47:19in my state is you
• 47:20give up custody of this
• 47:22child
• 47:22because you're never leaving,
• 47:24maybe that's a good enough
• 47:25option. And I think that
• 47:26a lot of these discharge
• 47:27do become about
• 47:29building consensus with parents about
• 47:32safe enough
• 47:33in an imperfect world.
• 47:36But one of the things
• 47:36that's really hard is when,
• 47:38especially when we start getting
• 47:39really creative and engaging parents
• 47:40with like
• 47:42really out of the box
• 47:42ways, finding like resources in
• 47:44their communities and things is
• 47:45that there there are data
• 47:48that those resources go away
• 47:50and that these safety nets
• 47:52that people build, the novelty
• 47:53of this wears off and
• 47:55people leave.
• 47:57But
• 47:59how you get people we're
• 48:01doing some empirical research at
• 48:02our place on how parents
• 48:03get engaged in tracheostomy decision
• 48:05making and who they talk
• 48:07to and where they go
• 48:07for information
• 48:09and how you get people
• 48:10to
• 48:11really engage with this question
• 48:13of, am I ready to
• 48:13have an ICU in my
• 48:14house?
• 48:16And if I'm not,
• 48:17what's the alternative? So in
• 48:19my experience,
• 48:20when people say no to
• 48:21tracheostomy,
• 48:23they're not saying,
• 48:25if what this takes is
• 48:26a tracheostomy and then ICU
• 48:28in my house,
• 48:29I'd rather consider hospice and
• 48:30comfort care. What they're saying
• 48:32is we will stay here
• 48:33until we don't need one.
• 48:35What? Until we don't need
• 48:36one.
• 48:37And we talked about this
• 48:38at lunch. Sometimes they successfully
• 48:39stay until they don't need
• 48:40one.
• 48:41Sometimes they stay until they're
• 48:42like, alright. I guess we're
• 48:43not ever gonna not need
• 48:44one, and they got one.
• 48:46Sometimes something catastrophic happens.
• 48:48But usually, the alternative they're
• 48:50weighing
• 48:51is not different goals of
• 48:53care. It's a workaround to
• 48:55the thing that they don't
• 48:56want, can't fathom, can't achieve.
• 48:58I don't know if that
• 48:59kinda got it here.
• 49:03But to a point that
• 49:04you made,
• 49:05here, take that with you,
• 49:06To a point that you
• 49:07made before, Naomi, which is
• 49:09maybe we can reject the
• 49:10premise. And this is something
• 49:11that you touched on, which
• 49:12that does
• 49:14going home
• 49:15I mean, should that be
• 49:16the North Star? Would we
• 49:18take an awful lot of
• 49:19pressure
• 49:19off an awful lot of
• 49:21people if
• 49:23we didn't say what we're
• 49:23gonna try and do is
• 49:24get this to the point
• 49:25where you can take this
• 49:25child home. You know what?
• 49:27Your life is could be
• 49:28better, and, in fact, the
• 49:29kid's life could be better
• 49:30if we found some place
• 49:31within a thirty minute drive
• 49:32of your house,
• 49:34where they could take care
• 49:34of this. And you could
• 49:35still be very much involved
• 49:36in the child's life. And,
• 49:38I mean, here, I mean,
• 49:39some folks in the room
• 49:40still might remember our pediatric
• 49:42respiratory care unit.
• 49:44And, I mean, I mean,
• 49:45I'll be blunt, which was
• 49:47for, you know, for some
• 49:48cases like this, it wasn't
• 49:49designed for exactly like this,
• 49:51but I I never heard
• 49:52an argument for closing it
• 49:53down except that, you know,
• 49:55it costs money.
• 49:58That, obviously, it would cost
• 49:59money to have these facilities
• 50:01and and
• 50:02in terms of generating RVUs,
• 50:04etcetera, this would be a
• 50:05big question. But but but
• 50:06what about that? You you
• 50:07you question that premise yourself
• 50:08that maybe we shouldn't be
• 50:10aiming to get these kids
• 50:11home, but someplace else parents
• 50:12who don't want I mean,
• 50:13I think to say
• 50:14to take a parent who
• 50:15doesn't wanna turn their living
• 50:17room into an ICU
• 50:18but wants their kid to
• 50:20live
• 50:21as being fundamentally irrational, I
• 50:23don't think that's that irrational.
• 50:24Like, I think that makes
• 50:25a lot of sense. You
• 50:26know?
• 50:28Please.
• 50:29Sure. Thank you so much,
• 50:31for coming. It's really a
• 50:32thought provoking talk, and
• 50:35it made me think of,
• 50:38Emily Oster, who's an economist
• 50:40out of Brown who writes
• 50:41about parenting issues.
• 50:43And she often says there's
• 50:45no secret option c, meaning
• 50:47we ought to dispense with
• 50:48the magical thinking
• 50:50and the wishing away of
• 50:51certain problems and sometimes come
• 50:53to a place of acceptance
• 50:55depending on our role in
• 50:56a given system about
• 50:58what the limitations are. And
• 51:00you reference, like, some of
• 51:01these are hospital level solutions.
• 51:02Some of these are systems
• 51:03level solutions. Some of these
• 51:05are Mount Everest y things
• 51:06where we'd have to move
• 51:07heaven and earth to get
• 51:08to them.
• 51:09I'm in my first year
• 51:11of medical school.
• 51:12So I'm thinking about the
• 51:14long training road ahead, and
• 51:16I'm wondering what you think
• 51:18are
• 51:19practical
• 51:20skills
• 51:21that medical students,
• 51:23residents, fellows, even attendings. What
• 51:26have you seen people equip
• 51:27themselves with
• 51:29that lets them
• 51:31come to a place of
• 51:32acceptance without having to solve
• 51:33those systems level problems.
• 51:36And
• 51:37we'll never avoid moral distress,
• 51:39but navigate it in a
• 51:41healthy way while caring for
• 51:43these patients.
• 51:45Well, I'll give you one
• 51:46that doesn't apply to all
• 51:47of those situations,
• 51:49but does work for me
• 51:51a lot of the time
• 51:53that comes around
• 51:55letting people want things that
• 51:56I wouldn't pick.
• 51:58Right. And mine is it's
• 51:59truly a mantra and it's,
• 52:00I wish they didn't want
• 52:01this, but they do. And
• 52:02I say those words in
• 52:03my head, I wish they
• 52:04didn't want this, but they
• 52:05do as opposed to what's
• 52:07wrong with you, that you
• 52:08want this. Right. And letting
• 52:10people want something and value
• 52:12something
• 52:13that isn't necessarily what you
• 52:15would pick.
• 52:16Right?
• 52:17And that to me, to
• 52:18me, it has all been
• 52:19about trying to at least
• 52:21come out of a place
• 52:22of judgment
• 52:23and try not to view
• 52:24people as particularly as being
• 52:26defective for wanting their kid
• 52:27to live. Right as a,
• 52:29as a general idea.
• 52:32And not to confuse hope
• 52:34and denial,
• 52:35right? So when people say,
• 52:37I know you're telling me
• 52:38that this is really long
• 52:39shot and I believe that
• 52:40my child is going to
• 52:41be the zero point one
• 52:41percent,
• 52:43They're not making an actuarial
• 52:45determination that they think that
• 52:46their child is gonna be
• 52:47a point one percent. Right?
• 52:48That's not the activity that
• 52:49they're engaging in. And so
• 52:51trying to talk them out
• 52:52of that by making an
• 52:53actuarial argument isn't going to
• 52:56work.
• 52:56Right? And so I think
• 52:58that
• 53:01don't put it that way.
• 53:02If that you know, if
• 53:04it's not gonna happen,
• 53:05just say it's not gonna
• 53:07happen and don't hinge it
• 53:08on, like, this. But I
• 53:09have to be absolutely truth
• 53:11and tell them that, like,
• 53:11I guess it's theoretically a
• 53:13tiny bit possible and, like,
• 53:14offer that as an anchor.
• 53:15Right? So
• 53:16so one is let people
• 53:18pick things that you wouldn't
• 53:19pick. Another is don't offer
• 53:20people choices that aren't things
• 53:22that
• 53:23they, that you're going to
• 53:24let them pick. Right? So
• 53:25if it's not a choice,
• 53:26don't put it on the
• 53:27menu and then say you
• 53:27were wrong for picking the
• 53:28thing that I didn't want
• 53:29you pick.
• 53:32How not to, as a
• 53:33first year
• 53:34student, be totally depressed by
• 53:36this. You know, Mark started
• 53:37with like this depressing. Right?
• 53:39Is a lot harder, right?
• 53:40And how not to feel
• 53:41totally daunted by this is
• 53:43a lot harder. And, you
• 53:44know, we talked earlier this
• 53:45morning about just the challenges
• 53:47of like, how do you
• 53:48build
• 53:49a working functional system to
• 53:51improve continuity over the six
• 53:54months of a hospitalization.
• 53:55Even that's really hard.
• 53:57And that my last sort
• 53:59of mantra there is like
• 54:00if you read the book,
• 54:02the power of habit is
• 54:03small wins, right? Just you
• 54:05don't have to fix it
• 54:06all. Like, take a tiny
• 54:08thing and fix a tiny
• 54:10thing is is the way
• 54:11that I have
• 54:13lived with how imperfect that
• 54:14it is.
• 54:16Yeah. Well, here we got
• 54:17a gentleman here and then
• 54:18a gentleman back there.
• 54:19Hi.
• 54:20Thank you so much for,
• 54:22this talk. It's a lot
• 54:23to think about.
• 54:25I wanted to touch on
• 54:26the question that's on the
• 54:27slide.
• 54:28When is good enough good
• 54:29enough?
• 54:30And we talked a lot
• 54:31during this talk about how
• 54:33the healthcare system is really
• 54:34strained.
• 54:35There's often a backlog of
• 54:37a lot of patients.
• 54:38And I was curious if
• 54:39those pressures
• 54:40of, like, the high, like,
• 54:43load on these hospital systems
• 54:45ever changes the threshold of
• 54:46good enough for patients.
• 54:48And,
• 54:49additionally, whether, like, the implied
• 54:52odds
• 54:53of, like, a patient's family
• 54:54being able to take care
• 54:55of them outside of the
• 54:56hospital ever changes,
• 54:58what we define as good
• 55:00enough, whether it does and
• 55:01whether it should.
• 55:04That's a really good question.
• 55:05And in some ways, there
• 55:06are some sort of simple
• 55:07answers,
• 55:09that I really learned during
• 55:11the pandemic, actually. So one
• 55:12of the things that happened,
• 55:13like, if you're a bioethicist
• 55:14during the pandemic, you're like,
• 55:15this is it. This is
• 55:16what we trained for.
• 55:18And
• 55:19one of the things that
• 55:20I learned that I invoke
• 55:21all the time is if
• 55:22you're going to ration something,
• 55:25you do it with rules
• 55:26in the light of day.
• 55:28You don't do it in
• 55:29darkness. You don't make it
• 55:31up on the fly.
• 55:32You
• 55:33you convene a room. You're
• 55:34explicit that that's what you're
• 55:36doing and you write it
• 55:37down and you vet it
• 55:38and vet it and vet
• 55:39it and you show it
• 55:40to people that you know
• 55:41are going to hate it
• 55:42and pick it apart and
• 55:43you make sure you've done
• 55:44it fairly. So if you're
• 55:45going to do something like,
• 55:46say,
• 55:48it's RSV season and the
• 55:49hospital is more full than
• 55:50usual, so we're going to
• 55:51move the goalpost about when
• 55:52we do this or what
• 55:53the discharge criteria are.
• 55:55I mean, I think it's
• 55:56extremely
• 55:57hard to, to execute something
• 55:59like that, but you're really
• 56:01explicit about what you're doing
• 56:03and you make the trade
• 56:04offs really clear.
• 56:08I think this,
• 56:09you know, things come up
• 56:10like this with like
• 56:12early discharge around newborn care,
• 56:13right? Where you have some
• 56:14parents who really want to
• 56:15go home, like the, like
• 56:16the UK model where you
• 56:17go home after six hours,
• 56:18right? And generally we think
• 56:19of like going home with
• 56:20a newborn in less than
• 56:22twenty four hours as being
• 56:23like,
• 56:24like potentially risky, right? Sometimes
• 56:26the way you do this
• 56:27is you build creative workarounds.
• 56:28Like the way we're doing
• 56:29this at our hospital is
• 56:30we're
• 56:31we're sending,
• 56:32midwives to the homes. Right?
• 56:33So sometimes the way you
• 56:35do the good enough is
• 56:36that you think more creatively
• 56:37about what the patches are.
• 56:39Right? And you don't just
• 56:40say, well, this sucks, but
• 56:41I guess it's all we
• 56:41can do. You think really
• 56:43creatively about
• 56:45the and. Right? Like, it's
• 56:46not a but, it's an
• 56:47and. Like, well, we're gonna
• 56:49change the standard
• 56:50and we're gonna
• 56:52mitigate our discomfort with the
• 56:54potential downsides of that by
• 56:56adding these other things.
• 56:59It's when what we learned
• 57:00during the pandemic is that
• 57:01when we didn't
• 57:02think hard enough and we
• 57:04weren't careful enough and we
• 57:05didn't show it to enough
• 57:07people, we made terrible mistakes.
• 57:12The other thing that's sad
• 57:13is that kids often pay
• 57:15the price for this because
• 57:16we're all they're almost always
• 57:17an afterthought. Right? Like, the
• 57:18outer space for kids is
• 57:20almost always less of a
• 57:21perceived crisis than like outer
• 57:22space for adults.
• 57:25But
• 57:27it's really dicey to say,
• 57:31well, we're full. So like,
• 57:33you know, yesterday, you you
• 57:35needed two providers, but today
• 57:36it's that, you know, like,
• 57:37you start doing that case
• 57:39by case and somebody gets
• 57:40hurt.
• 57:43So my question is around,
• 57:47my question is around what
• 57:49is meaningful function
• 57:51that makes sort of, like,
• 57:53return to home, like,
• 57:56a a moral good in
• 57:57a sense. Meaningful function?
• 57:59Like, meaningful function.
• 58:01So,
• 58:02like, I think a lot
• 58:03of the reasons why we
• 58:04consider, like, going home and
• 58:06we assume that going home
• 58:07is a good idea is
• 58:08also because of the potential
• 58:09activities and development that the
• 58:11child can engage in,
• 58:13at home as opposed to
• 58:14in the hospital. And you've
• 58:16kind of, like,
• 58:17pushed against some of these.
• 58:19But I I'm wondering if
• 58:20there's any thought around, like,
• 58:22are there, like, requirements
• 58:25of certain children that make
• 58:26it such that the function
• 58:28that they
• 58:30will regain or are likely
• 58:31to regain in the short
• 58:32term is, like,
• 58:33not enough for them to
• 58:35actually benefit
• 58:36from going home.
• 58:38I am gonna push back
• 58:39against what you're saying. I
• 58:40think that there is a
• 58:42sense that
• 58:44there's existential good in being
• 58:45at home
• 58:47beyond some of those,
• 58:49you get to roll around
• 58:49on the floor with your
• 58:50your siblings and your dog
• 58:52kind of things. I mean,
• 58:53we have people who ask
• 58:54to take the bodies of
• 58:56their children who have died
• 58:57home.
• 58:58Right? And we we have
• 58:59people, you know, people who
• 59:01go home, you know, ambulance
• 59:03home on CPAP so that
• 59:04their children can die at
• 59:05home. I think for some
• 59:07families, this
• 59:08truly kind of spiritual existential,
• 59:11you belong at home with
• 59:12us thing has nothing to
• 59:14do with function at all.
• 59:15And we sell that when
• 59:17it's convenient. Right? When we
• 59:18want our bed back, we
• 59:20push hard on this, don't
• 59:21you want your child at
• 59:22home with you? And some
• 59:23people really do. I mean,
• 59:25so it is the North
• 59:26Star for some people that
• 59:27has nothing to do with
• 59:30tangible things they're gonna get
• 59:31out of being at home.
• 59:32It's that
• 59:33our family is together at
• 59:35home.
• 59:36And even if it's just
• 59:37that they smile when we
• 59:38come into the room or
• 59:39I smile when I see
• 59:41them in the room that
• 59:41they belong,
• 59:44that has nothing to do
• 59:45with the function they're going
• 59:47to achieve.
• 59:50The bigger question of
• 59:52so one way people have
• 59:53talked about this is relational
• 59:54potential, right? Just thinking in
• 59:55the longer term about
• 59:58about how much does a
• 59:58society invest in someone who
• 59:59is technology dependent
• 01:00:00has to do with their
• 01:00:02different kinds of potential. That's
• 01:00:04a very different conversation than
• 01:00:05what I've talked about. That's
• 01:00:06a who's worth it question.
• 01:00:08That is not really what
• 01:00:10I talked about
• 01:00:11here, which
• 01:00:14I'd say in general in
• 01:00:15pediatric ethics, we've mostly moved
• 01:00:17away from, right? Like this
• 01:00:18idea that like we get
• 01:00:19to decide
• 01:00:20whose
• 01:00:22quality of life is worth
• 01:00:23it. I think our bracket
• 01:00:25around that is really suffering.
• 01:00:26Right? If we you have
• 01:00:28suffering that I can't relieve,
• 01:00:31I don't prolong that suffering.
• 01:00:32But beyond that,
• 01:00:34I think
• 01:00:35if your parents
• 01:00:37see that you
• 01:00:39you live a life that
• 01:00:40they see you benefiting from
• 01:00:42having,
• 01:00:42we we don't push back
• 01:00:44against that.
• 01:00:50Here, please.
• 01:00:58Hi. Thank you. I'm curious,
• 01:01:00like, how much of this
• 01:01:01problem, if any of this
• 01:01:02problem, you think could be
• 01:01:03addressed by simply increasing the
• 01:01:05number of NICU beds? And
• 01:01:06you talked about, like, the
• 01:01:07baby,
• 01:01:09baby LTAC, so it was.
• 01:01:10Like, how how like, what
• 01:01:11sort of additional ethical challenges
• 01:01:13that that might, address?
• 01:01:15Well, so we don't have
• 01:01:16enough beds, full stop. Right?
• 01:01:17And it's not just the
• 01:01:18right beds. It's the right
• 01:01:19beds in the right places,
• 01:01:21the right
• 01:01:22providers in the right places.
• 01:01:26The baby LTAC thing is
• 01:01:27is there there's two questions.
• 01:01:28There's capacity overall. There's there's
• 01:01:31these could we ever have
• 01:01:32a baby LTAC? Who would
• 01:01:33be the
• 01:01:34care providers in those places?
• 01:01:35Like, we are looking, for
• 01:01:37example, at my place. We
• 01:01:38just acquired another NICU. And
• 01:01:39we are looking
• 01:01:42at if you are not
• 01:01:43ready for a trach, you
• 01:01:44can go to this other
• 01:01:45NICU and you can be
• 01:01:46there for months on CPAP,
• 01:01:48sort of like trying to
• 01:01:49get off this.
• 01:01:50But it's the reason that
• 01:01:51I talked about my research
• 01:01:52agenda for this. I don't
• 01:01:53think we have any real
• 01:01:54sense of what the scope
• 01:01:55of this is because we're
• 01:01:57still defining ultra long stay
• 01:01:58as twelve days.
• 01:02:01I think we need to
• 01:02:02know that.
• 01:02:06Do you think it'd be
• 01:02:07premature? Sorry. Just tell you
• 01:02:08to make any of these
• 01:02:09big changes before you got
• 01:02:10that sort of data.
• 01:02:14Could you repeat the question
• 01:02:15then? Yeah. So the question
• 01:02:15is whether it would be
• 01:02:16premature to make those sort
• 01:02:17of big changes. If I've
• 01:02:18learned anything in my budding
• 01:02:19career as like a suit,
• 01:02:20it's that you can't make
• 01:02:21a big change without making
• 01:02:23a numbers case for it.
• 01:02:24So and it's not a
• 01:02:25good idea. Right? Because if
• 01:02:26you do that once, right,
• 01:02:27if you get people to
• 01:02:28invent invest in a big
• 01:02:30idea once and you were
• 01:02:31wrong, they never listen to
• 01:02:32you again. So I wouldn't
• 01:02:34advocate for that.
• 01:02:37Thank you so much.
• 01:02:39I'm Sylvia. I am a
• 01:02:41a pediatric,
• 01:02:42social worker here at the
• 01:02:43hospital, and I work with,
• 01:02:45transplant recipients and transplant candidates.
• 01:02:47So while we're waiting for
• 01:02:48the transplant,
• 01:02:50we do have long hospitalizations.
• 01:02:52And I have found that
• 01:02:53for the moral distress
• 01:02:55part, like, actually having, like,
• 01:02:56debriefings and talking to one
• 01:02:58another, hey. This is really
• 01:02:59challenging to see the the
• 01:03:00child with this long hospitalization
• 01:03:01has been very helpful.
• 01:03:03And in Connecticut, we do
• 01:03:04have medically complex foster homes,
• 01:03:07but I've seen children be
• 01:03:09completely heartbroken
• 01:03:10when we advocate for a
• 01:03:12safe placement because it's psychosocially
• 01:03:14unfit, and all that child
• 01:03:16wants to do is to
• 01:03:18go home with with their
• 01:03:19parent,
• 01:03:20regardless of the ramifications.
• 01:03:23So one of the saddest
• 01:03:24cases I had, he had
• 01:03:25a really short life expectancy.
• 01:03:27And,
• 01:03:28part of all my advocacy
• 01:03:29efforts towards the end was
• 01:03:31trying to break down the
• 01:03:33barriers
• 01:03:34put in place by our
• 01:03:35department of children and families,
• 01:03:36your CPS.
• 01:03:38So this is extremely emotionally
• 01:03:39challenging. And I feel like
• 01:03:41my patient
• 01:03:42is the pediatric patient and
• 01:03:44also the families, but also
• 01:03:46the staff. And it's been
• 01:03:47really hard, to to provide
• 01:03:49support with the staff.
• 01:03:50Yeah. There's a lot in
• 01:03:51that comment that's important.
• 01:03:54I mean, one is just
• 01:03:55any version of calling people
• 01:03:57bad parents for
• 01:03:59not I mean,
• 01:04:00doing that with healthy children
• 01:04:02when parents don't have what
• 01:04:03they need is sort of
• 01:04:04bad enough. But when what
• 01:04:05they need is heroic, I
• 01:04:06think is sort of even
• 01:04:07worse.
• 01:04:09And yeah, kids want to
• 01:04:10be with their parents even
• 01:04:11when their lives with their
• 01:04:12parents are pretty bad. And
• 01:04:13even when their parents are
• 01:04:15potentially not good people, kids
• 01:04:16want to be with their
• 01:04:17parents. Right?
• 01:04:18The issue of staff, I
• 01:04:19mean, there's been some work,
• 01:04:20like, in NICUs, for example,
• 01:04:21about embedded psychologists in NICUs
• 01:04:24to support, not like like
• 01:04:25for parents, but also for
• 01:04:27staff. Right? I mean, the
• 01:04:28the toll these kinds of
• 01:04:30cases take on people, you
• 01:04:31know, like in our NICU,
• 01:04:32I imagine the NICU here
• 01:04:33is the same, nurses take
• 01:04:34on this, like, primary role.
• 01:04:35Right? And they and
• 01:04:37one, I mean, the potential
• 01:04:38for, like,
• 01:04:40really problematic boundary violations. Right?
• 01:04:43But also just, like,
• 01:04:44they when these patients die,
• 01:04:46they experience profound loss. When
• 01:04:48these patients get discharged, they
• 01:04:49have, like, problems with separation.
• 01:04:51I mean, I think that
• 01:04:53we didn't build acute care
• 01:04:54hospitals for what these kinds
• 01:04:56of relationships were gonna do
• 01:04:58to our staff either. And
• 01:04:59they are leaving the profession.
• 01:05:01They also make more mistakes.
• 01:05:02They do there's a thing
• 01:05:03called, like, values and position.
• 01:05:04We talked about this. Right?
• 01:05:05Like, you lose the ability
• 01:05:06to to participate in perspective
• 01:05:08taking. Like, what happens to
• 01:05:10you if you don't
• 01:05:12have this kind of thing
• 01:05:13tended to over months and
• 01:05:15years is is like we
• 01:05:16know it's really bad.
• 01:05:18I just probably have to
• 01:05:19hear it. But they don't
• 01:05:20they don't get to see
• 01:05:21the long term outcome that
• 01:05:22I do. I'm inpatient and
• 01:05:24outpatient.
• 01:05:24Mhmm. So so I think
• 01:05:26that's important. We should
• 01:05:28I think it would be
• 01:05:28curative to have the inpatient
• 01:05:30staff that only sees the
• 01:05:31acute part. Like, in my
• 01:05:33role as a transplant social
• 01:05:34worker, I get to serve
• 01:05:36inpatient and outpatient. And these
• 01:05:37nurses are just seeing the,
• 01:05:39like,
• 01:05:40the most brutal time without
• 01:05:41seeing the awesome quality of
• 01:05:43life that comes after. And
• 01:05:44I've been trying to shed
• 01:05:45light on that, but I
• 01:05:46think that that should be
• 01:05:47in embedded. It shouldn't be
• 01:05:49something that is spontaneously offered.
• 01:05:51Oh, when they come back
• 01:05:52for their outpatient appointment, I'll
• 01:05:53make sure that they come
• 01:05:54visit you at the unit.
• 01:05:55Yeah. I think that that
• 01:05:56kind of closure that's something
• 01:05:57we see with residents too.
• 01:05:58And it actually becomes a
• 01:05:59big problem with residents because
• 01:06:01the kids with chronic critical
• 01:06:03illness that they see are
• 01:06:04the ones who get admitted
• 01:06:05every month. Right? And they
• 01:06:06don't see the ones who
• 01:06:06are home.
• 01:06:07Right? And I had this
• 01:06:08happen to me actually. I
• 01:06:09was in attending when this
• 01:06:10happened where it's,
• 01:06:12a patient that I was
• 01:06:13seeing was telling me about
• 01:06:13her another child
• 01:06:15that had Down syndrome. And
• 01:06:16I said, oh, like, you
• 01:06:17know, where does he get
• 01:06:18his specialty care? And she
• 01:06:18said, what specialty care? He
• 01:06:19doesn't need any. Right? And
• 01:06:21we don't see that child,
• 01:06:22right? We don't and our
• 01:06:23residents have this all the
• 01:06:25time where their experience of
• 01:06:26like, for me, extreme prematurity,
• 01:06:28prematurity
• 01:06:29is the frequent flyers to
• 01:06:30the ER, not the ones
• 01:06:31who go home and stay
• 01:06:32there. Right? And so I
• 01:06:33do think that ability to,
• 01:06:35to achieve that, to recognize
• 01:06:36that life over the lifespan
• 01:06:38builds empathy, if nothing else.
• 01:06:41I kind of just sort
• 01:06:42of a pragmatic question.
• 01:06:44And those families that are
• 01:06:45sort of decisionally rigid and
• 01:06:47maybe you're
• 01:06:48choosing the thing you're not
• 01:06:49wanting them to choose.
• 01:06:51I'm thinking about the repeated
• 01:06:53code type patient. How do
• 01:06:55you build a constructive relationship
• 01:06:57with that family? I I
• 01:06:58would imagine they if they're
• 01:06:59seeing you for the sixth
• 01:07:00time,
• 01:07:01they're not going to engage
• 01:07:03with you. And I know
• 01:07:04there's certainly something to be
• 01:07:05said for rapport building, but
• 01:07:07I just know that through
• 01:07:08some of my work with
• 01:07:09tracheostomy, and I'm kind of
• 01:07:11the face of that discussion
• 01:07:12month over month with some
• 01:07:13of these families.
• 01:07:15Some of that that's been
• 01:07:16a I've built great relationships
• 01:07:18that I've continued even beyond
• 01:07:19discharge, and sometimes I feel
• 01:07:21like
• 01:07:22the family can become avoidant
• 01:07:23of the hospital, and I'm
• 01:07:24building
• 01:07:26an interaction that is distancing
• 01:07:27that parent from their child,
• 01:07:29which I hate. And I
• 01:07:30was just wondering what your
• 01:07:31perspective is on kind of
• 01:07:33a how can we build
• 01:07:34something constructive
• 01:07:35and be and hold their
• 01:07:36hand longitudinally rather than drive
• 01:07:38them away?
• 01:07:40I think there's a lot
• 01:07:41there's a lot there, and
• 01:07:42and it you're one, one,
• 01:07:43I mean, you accept that
• 01:07:44you're not gonna win them
• 01:07:44all. But but I think
• 01:07:46some of that is building
• 01:07:47in other sorts of supports
• 01:07:49for parents. So they have
• 01:07:50other outlets of it. Like,
• 01:07:52they feel heard
• 01:07:54in other settings. Some of
• 01:07:55it is anticipatory guidance. We're
• 01:07:57gonna talk about this and
• 01:07:58we're gonna keep talking about
• 01:08:00this.
• 01:08:00And sort of setting up
• 01:08:02early so that you're having
• 01:08:03that conversation before the sign
• 01:08:04goes up on the wall
• 01:08:05that says I don't wanna
• 01:08:06hear anything negative. Right? Because
• 01:08:08you've heard that by the
• 01:08:09time the sign goes up,
• 01:08:10it's it's gone. And and
• 01:08:12that experience of the parents
• 01:08:13never come, and as soon
• 01:08:14as they come, you're like,
• 01:08:15good. You're here. I can
• 01:08:16tell you how bad it
• 01:08:16is. And then they don't
• 01:08:17come back. And then and
• 01:08:19you
• 01:08:20that's the QI. Like, you've
• 01:08:21built the system designed to
• 01:08:22get exactly the result that
• 01:08:23it gets. Right? When people
• 01:08:25come and all you do
• 01:08:26is bludgeon them with the
• 01:08:28truth.
• 01:08:29And for me, that, yeah,
• 01:08:30I heard you the first
• 01:08:31twenty times, you told me
• 01:08:32how bad this is.
• 01:08:34I think
• 01:08:36setting expectations early for what
• 01:08:39these goals of care conversations
• 01:08:40are gonna be like, that
• 01:08:42we are gonna talk about
• 01:08:43this at regular intervals.
• 01:08:46But I also think a
• 01:08:47lot of us in ways
• 01:08:48that we don't realize are
• 01:08:49kind of like
• 01:08:51punitive about some of the
• 01:08:52way we talk about this
• 01:08:53in ways that we don't
• 01:08:54even realize. So like one
• 01:08:55of the things that I
• 01:08:55sometimes hear is,
• 01:08:57you know, when I have
• 01:08:58a parent who's chosen something
• 01:08:59that they don't, that people
• 01:09:00didn't want them to choose,
• 01:09:01right? It's like, I want
• 01:09:02them to go up to
• 01:09:03the pick you and see
• 01:09:04what this is gonna look
• 01:09:05like when when he's six.
• 01:09:07And part of me is
• 01:09:08like, think about
• 01:09:10that six year old's parent
• 01:09:11and the
• 01:09:13you just made a cautionary
• 01:09:14tale out of someone else's
• 01:09:15kid. Right? And imagine if
• 01:09:17that was your kid. And
• 01:09:18and so the lack of
• 01:09:19empathy for the whole situation
• 01:09:20there, like to punish you
• 01:09:21for wanting something I don't
• 01:09:22want you to want, I'm
• 01:09:23gonna go,
• 01:09:24like, like,
• 01:09:25waterboard you with with with
• 01:09:27something bad.
• 01:09:29But,
• 01:09:32I think
• 01:09:35setting up the expectation,
• 01:09:38not
• 01:09:40making people, like, sort of
• 01:09:41saying, like, you're wrong for
• 01:09:42being hopeful.
• 01:09:45But,
• 01:09:46like, there's another piece of
• 01:09:47this that I I do
• 01:09:48think is actually helpful that,
• 01:09:49like, flitted
• 01:09:50past me. But
• 01:09:54I I think there's something
• 01:09:55about the way we engage
• 01:09:57with it that isn't just
• 01:09:58like you're wrong, wrong, you're
• 01:09:59wrong. Like one of my
• 01:10:00one of my colleagues used
• 01:10:01to say something like, if
• 01:10:02you wanna be hopeful, I'll
• 01:10:03be hopeful with you. And
• 01:10:05we still have to talk
• 01:10:06about what this is going
• 01:10:07to look like if it
• 01:10:08doesn't go the way both
• 01:10:09of us hoped it would
• 01:10:10go. Right? And sort of
• 01:10:12building this alliance around, like,
• 01:10:13I will share the wanting
• 01:10:15this to go well, and
• 01:10:16also help you prepare for
• 01:10:18what if it doesn't.
• 01:10:19Instead of this, like, you
• 01:10:21know it's gonna be really
• 01:10:22bad. Right? And the other
• 01:10:22thing is the best way
• 01:10:23to lose someone is by
• 01:10:25telling them about only the
• 01:10:26bad parts and having it
• 01:10:27go better than expected. Right?
• 01:10:29Like
• 01:10:30like, you lose someone forever
• 01:10:32when you only prepare them
• 01:10:34for a terrible outcome and
• 01:10:35it goes really well. And
• 01:10:35they're like, why would I
• 01:10:36trust you? You rooted against
• 01:10:37my kid. Why would I
• 01:10:39trust you?
• 01:10:41So but you're gonna lose
• 01:10:42some people some of the
• 01:10:43time. Right? And the Internet's
• 01:10:44gonna tell them how terrible
• 01:10:45you are and how terrible
• 01:10:46all of us are, and
• 01:10:47you're gonna lose some people
• 01:10:48some of the time. And
• 01:10:49you give yourself some grace
• 01:10:50when that happens.
• 01:10:56Anyone else? Is there anybody
• 01:10:58that you'd like to share?
• 01:10:59Online or Say again? Is
• 01:11:00there anyone on Zoom?
• 01:11:01Do we have I mean,
• 01:11:02you wanna check, see if
• 01:11:03there's a question on Zoom?
• 01:11:07What is where it means
• 01:11:08to be You know, it
• 01:11:09was it was you know,
• 01:11:10you made a a point,
• 01:11:12Naomi, that I thought was
• 01:11:13really,
• 01:11:14important. And there's a couple
• 01:11:15points when you talked about,
• 01:11:17you know, when this is
• 01:11:18what kids want, sometime is
• 01:11:20is is sometimes it's not
• 01:11:22just about trying to figure
• 01:11:23out what kids want. You
• 01:11:24know, I I tell a
• 01:11:25story about when one of
• 01:11:26my kids wanted something,
• 01:11:28and I said, well, I
• 01:11:29can't do that because I
• 01:11:30have to justify it to
• 01:11:31the boss.
• 01:11:32She's like a twelve year
• 01:11:33old girl and wants her
• 01:11:33to do something I thought
• 01:11:34was dangerous. And then she
• 01:11:35said, well, who's the boss?
• 01:11:36And I said, well, the
• 01:11:37boss is twenty five year
• 01:11:39old you. And when she
• 01:11:40gets here, I have to
• 01:11:41explain. So, I mean, it
• 01:11:42gets to a question of
• 01:11:43will people will these kids
• 01:11:46I mean, I I think
• 01:11:47that it's not so much
• 01:11:48about making
• 01:11:49a a a child happy
• 01:11:51as as it is. It's
• 01:11:53certainly, that's important or even
• 01:11:54the parents happy, but I
• 01:11:55sometimes think the person I
• 01:11:57work for most
• 01:11:58is this kid at twenty
• 01:11:59five. Will this kid at
• 01:12:00twenty five look back and
• 01:12:01say, thank you. You did
• 01:12:02the right thing for me,
• 01:12:03or you really did the
• 01:12:04wrong thing for me. That
• 01:12:05may be everything from placing
• 01:12:06the child with the the
• 01:12:08the biological parents to, doing
• 01:12:10a tracheostomy or whatever is
• 01:12:12to try and imagine what
• 01:12:13this looks like from the
• 01:12:14child's point of view,
• 01:12:16looking back
• 01:12:17as an adult. That's a
• 01:12:18very hard thing to do
• 01:12:19with newborns.
• 01:12:20The older the kid gets,
• 01:12:21it gets a little bit
• 01:12:22easier. But to try and
• 01:12:23have that perspective because in
• 01:12:25the moment, some so much
• 01:12:26of it seems so cruel.
• 01:12:29Well and I don't know
• 01:12:30about you, but the longer
• 01:12:31I do this, the less
• 01:12:32confident I feel on my
• 01:12:33crystal ball.
• 01:12:34You know, and and and
• 01:12:35the less sure I am
• 01:12:36that I can predict the
• 01:12:37future. And and somebody asked
• 01:12:39about this, you know, but
• 01:12:39patients that I didn't think
• 01:12:40were gonna live, live.
• 01:12:42And patients that I thought
• 01:12:43were gonna need a Drake
• 01:12:44don't or, you know, patients
• 01:12:45I thought were gonna do
• 01:12:46pretty well, do way worse
• 01:12:46than I expected.
• 01:12:48And so
• 01:12:49how on earth do you
• 01:12:50know how to answer to
• 01:12:51that future twenty five year
• 01:12:53old? Some sometimes you do.
• 01:12:54I would say that sometimes
• 01:12:56you do because some things
• 01:12:57are are are clearly not
• 01:12:58good for the child. So
• 01:12:59for example, the child who
• 01:13:00wants very much to be
• 01:13:01placed with a parent who
• 01:13:02clearly
• 01:13:03is, an an important and
• 01:13:05significant danger to that child.
• 01:13:07So clearly, I think you
• 01:13:08can bet that that child
• 01:13:09as an adult may look
• 01:13:10back and say, I'm glad
• 01:13:11I was taken out of
• 01:13:12that unsafe setting. But your
• 01:13:14point is well taken that
• 01:13:15that that often, you know,
• 01:13:17often we can't we can't
• 01:13:18know and we can't predict
• 01:13:19that stuff. You're absolutely right
• 01:13:21about that. And and so,
• 01:13:23you know, we're left grappling
• 01:13:24with this stuff and trying
• 01:13:25to make small changes and
• 01:13:26working with these things.
• 01:13:29Other thoughts?
• 01:13:32Yes, please.
• 01:13:34Wait for the mic.
• 01:13:39Well, thank you for for
• 01:13:41the thought.
• 01:13:43Well, my name is Francisco.
• 01:13:45I am from Colombia. I
• 01:13:47am during this month as
• 01:13:50international med student,
• 01:13:52and I want to share
• 01:13:53an experience that we have
• 01:13:55in our country.
• 01:13:57It's called,
• 01:13:59hospitalization. Maybe you have any
• 01:14:01strategy
• 01:14:02similar to it,
• 01:14:04and I want to know,
• 01:14:06what's your opinion about it
• 01:14:07because, well,
• 01:14:09a step behind,
• 01:14:12the full discharge of the
• 01:14:15of the hospital of on
• 01:14:16our patients in the area,
• 01:14:18on pediatrics area.
• 01:14:21We
• 01:14:23recently
• 01:14:23used it
• 01:14:25on that patients
• 01:14:26that only need oxygen or
• 01:14:29antibiotics.
• 01:14:31And, well, that things,
• 01:14:34limit
• 01:14:35the the
• 01:14:36the usefulness
• 01:14:38of,
• 01:14:40of the admission of that
• 01:14:41patients on
• 01:14:43on our,
• 01:14:45hospitalization
• 01:14:46floor.
• 01:14:47So the question that we
• 01:14:49use is,
• 01:14:51when is the the time
• 01:14:52that our patients
• 01:14:54can go to home and
• 01:14:56staying on a constant follow-up,
• 01:14:59consults?
• 01:15:01And, well,
• 01:15:02do you have an strategy
• 01:15:05similar to it, or do
• 01:15:07you use
• 01:15:08that,
• 01:15:09home hospitalization as an strategy,
• 01:15:13behind the full discharge
• 01:15:15or, like, medium point?
• 01:15:19So if I understand this
• 01:15:20correctly, you're talking about situations
• 01:15:21where you go home with
• 01:15:22a fair amount of in
• 01:15:23home supports?
• 01:15:24Yeah. Yeah. So I guess
• 01:15:26we I think different different
• 01:15:27institutions use that more or
• 01:15:29less. I mean, like in
• 01:15:30our adult hospital, we have
• 01:15:31something we call hospital at
• 01:15:32home. You know, we're really
• 01:15:33I mean, I think this
• 01:15:34is a fairly intensive amount
• 01:15:35of of services that we're
• 01:15:37providing in the home. Mhmm.
• 01:15:39You know, we, for example,
• 01:15:40like my one of my
• 01:15:40examples, I mean, we send
• 01:15:41kids home on oxygen all
• 01:15:42the time. We are very
• 01:15:44aggressively sending kids home with
• 01:15:46NG tubes.
• 01:15:48And I think this again,
• 01:15:49starts to get into at
• 01:15:50least with kids, interesting things
• 01:15:51about parental
• 01:15:53preferences.
• 01:15:53Okay. Right? Because we do
• 01:15:55still offer some choices about
• 01:15:57this and, you know, sort
• 01:15:58of.
• 01:16:00And what I've done is,
• 01:16:01you know, parents who say,
• 01:16:02I would never want to
• 01:16:03take my baby home with
• 01:16:04an NG tube. After a
• 01:16:06couple of weeks, they're like,
• 01:16:07can we talk about that
• 01:16:07program again? Because I've had
• 01:16:09enough of this.
• 01:16:10A good friend of mine
• 01:16:11who's a neonatologist,
• 01:16:12who studies chronic lung disease
• 01:16:14Yeah. Did a study with
• 01:16:15parents looking at sort of
• 01:16:17how much would it be
• 01:16:19worth to you? Like, how
• 01:16:20how much longer would you
• 01:16:21be willing to stay in
• 01:16:22the hospital to not go
• 01:16:23home on oxygen?
• 01:16:25And sort of had them,
• 01:16:26like, use, like, a physical
• 01:16:28scale to kind of, like,
• 01:16:28pull, like, how many more
• 01:16:29days you know, if you
• 01:16:30could go home two more
• 01:16:32days or two more weeks.
• 01:16:33So, like, what is it
• 01:16:33worth to you to stay
• 01:16:34in the hospital to get
• 01:16:35off oxygen? And then she
• 01:16:36actually talked to parents who'd
• 01:16:38gone home on oxygen or
• 01:16:39not,
• 01:16:40and said,
• 01:16:42you know,
• 01:16:43kind of like if you
• 01:16:44had to do it again.
• 01:16:45No parent of a baby
• 01:16:46who went home on oxygen
• 01:16:48said, I shoulda
• 01:16:49stayed and come off oxygen.
• 01:16:51But a lot of parents
• 01:16:52who who stayed said, I
• 01:16:53shoulda just gone home on
• 01:16:54the oxygen. Right? So not
• 01:16:55that value of being home
• 01:16:56thing. People start to go
• 01:16:57a little nuts in the
• 01:16:58NICU. Right? Like, they really
• 01:16:59wanna get out. Yeah. Some
• 01:17:01people think you shouldn't have
• 01:17:02a choice about that. Some
• 01:17:03people say, like, this isn't
• 01:17:04like, I'm sorry if you
• 01:17:04don't like it, you meet
• 01:17:05eligibility criteria. You're going home
• 01:17:07with oxygen. Right? Different programs
• 01:17:09build those things differently.
• 01:17:12I think it also like
• 01:17:14depends on do you have
• 01:17:15the resources to consistently put
• 01:17:17those resources in the home
• 01:17:19that you need?
• 01:17:22I think that telehealth for
• 01:17:23us changed this a lot.
• 01:17:25Like our HomeNG program works
• 01:17:27because
• 01:17:29almost all the visits are
• 01:17:30video visits.
• 01:17:32And our HomeNG program offers
• 01:17:35a little more
• 01:17:36than if you just go
• 01:17:37home and follow-up with your
• 01:17:38pediatrician.
• 01:17:39Okay. So like you go
• 01:17:40home with HomeNG, you get
• 01:17:42a speech pathologist, a dietitian,
• 01:17:43and a feeding psychologist. Right?
• 01:17:45You get this whole bundle,
• 01:17:46and we make it really
• 01:17:47attractive
• 01:17:48to go home with all
• 01:17:49these things, like,
• 01:17:51look over here, look over
• 01:17:51here, look over all these
• 01:17:52things.
• 01:17:54But some people say, like,
• 01:17:55I don't want stuff on
• 01:17:57my kid's face. I don't
• 01:17:58want people to see it.
• 01:17:59I don't want people to
• 01:18:00see my child as someone
• 01:18:01who has all these things.
• 01:18:03And I think the really
• 01:18:04compelling question in a country
• 01:18:05like the U. S, which
• 01:18:06is very much about what
• 01:18:08do I want, is how
• 01:18:09much do we care about
• 01:18:10what people want
• 01:18:12versus our public health need
• 01:18:14to open up that bed.
• 01:18:17And right now this is
• 01:18:18done hospital by it's not
• 01:18:20even done state by state.
• 01:18:21It's done hospital by hospital.
• 01:18:23And there are people who
• 01:18:24think it's hideously unsafe to
• 01:18:25send anyone home with an
• 01:18:26NGT.
• 01:18:27Right? And so,
• 01:18:29we don't have a strong
• 01:18:31collective identity about how we
• 01:18:33think that should be done.
• 01:18:34Okay. Well, thank you.
• 01:18:36Let me,
• 01:18:37close-up Yeah. Doctor Leventhal with
• 01:18:39a comment.
• 01:18:41Thank you for this wonderful
• 01:18:42discussion. I'm a pediatrician at
• 01:18:43the hospital for special care
• 01:18:45in Connecticut.
• 01:18:46About ten percent of the
• 01:18:47beds are for children. This
• 01:18:49is the only place in
• 01:18:50Connecticut that will accept transfers
• 01:18:52from Yale's unit or from
• 01:18:53the PICU.
• 01:18:55And children you were talking
• 01:18:56about, yes,
• 01:18:58you hit on the issues
• 01:18:59we face every day. So
• 01:19:00a a note of thanks
• 01:19:01and endorsement. I will take
• 01:19:03that. Along those lines, please
• 01:19:04join me in thanking.
• 01:19:13That's right. A little something
• 01:19:14for your wardrobe. This is
• 01:19:15the best More blue for
• 01:19:18your wardrobe.
• 01:19:19Now you're talking.
• 01:19:20Oh, yeah, baby. Thank you.
• 01:19:22Honest. Thank you so much.
• 01:19:24This was more. Thank you
• 01:19:25all for Appreciate your buzz.
• 01:19:26To reach we have a
• 01:19:27job to lecture.