[QUIET MUSIC] I got a consult in the
neonatal intensive care unit on a baby who had
been there for almost a year in a kind of common
story with multiple problems. And this doctor
looked at me and said, “We don’t think the
parents understand how serious things are.” And I said, “OK. Well,
how serious are they?” And he was like, “Well, Evie's
got all these problems.” And I was like, “So what
do you think might happen?” And like, honestly, this baby
might not ever make it home. And I say, “So you think
the baby's going to die.” And he right away was like,
“No, that’s not what I said.” And I’m not trying to be
funny, but I was like, “Do you think the baby’s going
to live here for the next 20 years?” He was taken
aback and, well, “I guess if you say
it that way then, yeah, we’re
worried about that.” I said, “Do you think
that maybe the reason the family is confused
about how serious it is, is that you can’t even say it.” We’re in that awkward place
where he may get better. He had some big fevers today,
so it’s a little hard for me to imagine. At some point, what I
suspect will happen is he’ll kind of start giving
up the fight a little bit. And then we might see his
heart rate starts slowing. And that’s when, for me,
that I would say maybe he has only minutes to hours. I think the process can
be incredibly scary. Can be very chaotic. I think when you’re fearless
about this thing, that is dying, people cling to
you, and you're a source of calmness and strength. [CAR ALARM BEEPS] So how you been doing? I’m doing OK. You’re doing OK? Yes. She’s smiling? Yes, all the time. Oh, good. She’s sleeping a lot. [EXHALES] A lot. Excessive sleeping. She’ll sleep. And then she’ll
wake up at 3:00 in the morning, like making
noise and pulling my hair and all of that. And then she’ll go
to sleep, and she’ll sleep the entire day." [BABY FUSSES] Oh, I know.
It’s my cold hands. Just watching her a
little bit breathe, like, she breathes real,
real, real — Light.
Like, light. Mm-hmm. But that’s her norm? Yeah, that’s normal for her. Even though this pattern
of breathing is her norm, it’s a little concerning,
but it’s keeping her going. It just makes it hard to —
kind of like, how long can you go like this? Right. It’s not a normal pattern in
the way that she’s breathing. And so, you know, I think
we gotta kind of make a plan. I think if we don’t
intervene — she’s calm, she’s comfortable,
she’s still giving you smiles but just for
a short period of time. And I think that
will continue. But my guess is she may only
have days or weeks to live. And I think that’s a real
possibility unless something turns around. She doesn’t show signs to
me of a cold or a virus. A lot of times — [SNIFFLING] It’s hard. You’re good. And I’m guessing you kin of
were feeling something, like you’re worried. (WHISPERING) Oh, she’s
got a little smile. I’m sorry. It’s OK. It’s a lot. Here you go. You’re a good mom. Thank you. I’m sorry that I had to
come out and [INAUDIBLE]. I prayed really hard
that she would come home, so I’m really grateful for
the time more than anything. [SNIFFLES] She’s a strong baby. No question. You’re a strong mom. [QUIET MUSIC] Everybody kind of says
that losing a child is the worst thing
that could happen. Palliative care perspective
often is finding good choices when everything seems bad. And if I start with the
ability to find good choices when I’m dealing with children
dying, which most people say is the worst bad that could
be, and I can find good, then we all can find good. I have a patient at
home in hospice care who appears to
be nearing dying. And the mom really doesn’t
want him to die at home, so I’m trying to
explore other options to see if we have any space. A lot of what I do
with these patients — and I’m trying to — I tell them, I’m trying
to de-medicalize death. I’m trying to humanize it. And I think most people
would want — they don’t want a medical death. They want a human death. I hear a lot, like, things like the
family’s not ready or the doctors will
kind of be like, well, we’re not consulting you
because they’re not ready. And I think that this is
almost always an error. I always feel like if we
wait until a family has very clearly become
ready to talk to me, that we’ve woefully
failed this family. Do you have a name? Are you not worried?
- Yes. You do have a name?
Do you want to share it? Or you’re not — Um, Giovanni. Giovanni?
Yes. Oh, I’m an Italian.
I like it. [CHUCKLES] So if Giovanni is
born alive, they will call the
pediatricians in just to kind of be available
cause we don’t always know exactly what’s
going to happen. OK. Given all the
things you’ve been told about the baby,
what are the things you’re most worried about? That, um, I don’t know,
I just — I’m really kind
of neutral to it. I’m just trying not to
feel it because it’s still, every day, he’s still moving. And I go to
the appointments, and he’s still having natural
heartbeats and everything. So ... So trying to kind of
not get too attached. Right. And I think you’re already
trying to protect yourself. You don’t want
to fall in love. Yes. And the more you fall in
love, the more it’ll hurt. I think we take it
a little different. We’re not going to force you,
but we also kind of see it like, the more you fall in
love, that means the more his life had meaning. And he had an impact. And so we’re also here — so gosh, if he
gets home, we’ll be all about getting you
pictures and cuddles and everything that we can. OK. And as a team,
we’re not really afraid of these things. Does that make some sense? It does. It’s so rare
that I see doctors able to describe the positive
as to why we might want to talk about this and why we
think planned dying is good. I do think that deep
down for many doctors, they are thinking about, like,
the quality of death, and they’re worried
that this child might die in a scary,
unpredictable way and with families not
being prepared emotionally, psychologically, spiritually. And they want to get
people into that place, but they’re not
explaining to them that that’s like — now what
we’re starting to think of is we want to plan
a better death. And we’ve seen the bad
deaths, and we want to give you a good death. Yeah. Are you doing OK? It’s been hard. Yep. I know that they took him
off the heart transplant list, but I didn’t know, like, if you
felt like at any point you wanted to sit
down and meet or talk about what the next steps
are, because there’s like the day to day, and
then there’s the big plan. Yeah. I would like to know
but right now — Focusing on getting him
a little better from this. Well, I hope he can
continue to wake up. I totally agree with what
the doctors recommended. He will wake up. And he will get better. That’s right. I’m a terrible... I’ve seen patients
slowly dying for months on a ventilator,
half a year on a ventilator. The most frustrating
thing, I think, is when we’re putting
in a breathing tube and we are not going to be
able to take the breathing tube out. They’re always — they’re not
going to live without it. But with the tube
in place, they are stable for a
period of time. With the tube in place,
we can breathe for them on the ventilator, and
we can tweak things, and we can adjust things, but
we can’t get the tube out. And they’re still
going to die. I think if you were to
poll most physicians, they would tell you
they would not want to be kept alive on machines. They would not want
extraordinary measures to be taken. They don’t have
that knowledge, when you’re trying
explain this to families. They don’t understand
really what they’re going to be doing,
what they’re taking on. If you have just
a lung problem, you just need a lung doctor. But if you have a
lung problem that’s affecting your kidneys,
and your kidneys are now affecting your heart, and
your heart is affecting this, and then you have
these doctors — that’s when you start
having some challenges. So who’s looking
at everything? And I look at all
these doctors. They’re all trying
so diligently. And then me, sometimes
I kind of come in and the overall picture is
things are getting harder. And they have a
problem often that is — the big, causative
problem is unfixable. And so we’re just trying
to fix all the symptoms, but if you can’t fix that big
problem, it’s going to come. I started out with one
doctor, and I think he left. So after that, I’ve had four
or five different doctors that I’ve seen. I mean, I know that
I have a sick baby, but they — it’s
just so impersonal because the questions
that they ask, and it’s just so
quick, fast, and they have so many other
patients to see. Morning, how are you?
Good, how are you? I’m good. How’s it going today? It’s going OK. [BEEPING] How’s the baby moving? He’s moving good. Cramping? No cramps. Contractions?
Yes, a lot. A lot? Yeah. Well, it’s pretty often. OK.
But it’s not painful. Yeah, and not consistent? So you know that’s normal. You’ve had babies before. So contractions here and
there are perfectly fine. Any leakage of fluid,
like your water broke? No. Bleeding from the vagina? No. Perfect. So we’re at 38 weeks
and four days now. I talked to Dr. Patwardan
just yesterday, the high-risk doctor. So she recommended an
induction around 39 weeks. So that’s Sunday. Correct.
OK. Yeah. And we also are not
going to do a C-section for any reason, correct? Correct. All right. Perfect. So the only thing,
unfortunately, Ms. Carter, is I am not on call
at all next week. I do work in a group of five
other physicians though. I think you’ve met
some of them, no? Yes, I’ve met them all. You’ve met them all,
right, through it all. Let’s listen to the baby. [GURGLING] [HEARTBEAT] He sounds perfect. [QUIET MUSIC] We have to kind
of be aware when people are making
decisions based on their own
self-protective — like I don’t want to feel guilty
that I didn’t do enough. Well, now I’m
treating your guilt, not what’s right for the baby. Or maybe the doctor
says, well, I don’t want to fight with his family. I don’t want to get sued. But now you’re treating
yourself and not the baby. So we have to bring it back. So what’s right for the baby? We have to — and get in the muck. Is this the right
thing for this person at this time in this family? That’s really hard work. It is. Research is showing
that earlier involvement of palliative care can have
dramatic impact on lots of different health
outcome measures. It was already mentioned,
the article in JAMA — the care was cheaper
over the course of life. And we don’t like to
necessarily say that, but they had less ER stays,
less hospitalizations and overall less
medical utilization. The quality of life
scores were also measured, and we anticipated
they would be better. So pain scores,
adjustment scores, depressions scores not
only of the patients, but their families. And they followed up
with bereavement scores of families. And the families after death,
they also were doing better. The very unexpected
outcome was the patients lived up to three
months longer on average. So we actually
improved survival. Living lives longer,
better and cheaper sounds awfully good, but
it acknowledges that we are going to die at the end. [QUIET MUSIC] I think it’s profoundly sad. The idea of dying,
of not being a part of this world
anymore, is profoundly sad. But it’s such a reality. I don’t know if it’s good, I don’t know if it’s healthy
to teach each other, to teach our children, to not
talk about something just because it’s sad. I got some yummy tortellini. We have tortellini soup. I was about to
say something. OK.
What? Then I totally forgot. It happens, man. It’s called getting old. Our family’s like a pattern
because Dad and Zaira don’t like olives, and
me and Mom like olives. That is like a pattern. I don’t think that’s
really a pattern. We’re just on the olive
team, and you guys are on the no-olive team. Mm-hmm. You’re the only one
on the mushroom team. I’m the only one on
the mushroom team. [LAUGHS] You know, I think I
mix my professional life and my personal life a lot. And it’s clear I have a
focus on death and dying. And I think it’s incredibly
important for my children to learn about grief. I look for opportunities
where my children might practice little losses. OK, tell me about Nibbles. He was a great
animal to have. Was he our bunny? Yeah. Do you miss him? Yes. Doing the funerals
for the pets, or if a toy is lost or broken,
really taking a moment of, how does this feel? And certain things
can’t be replaced. I’m open with them if
I’ve had a bad day. My kids know that
I’ve had patients die. I don’t think that they’re
overwhelmed by it. You help children ... You help children
because they’re sick. OK? You ... You help children
to keep them safe. Mm-hmm. You got him? Mm. [SIGHS] Welcome home. [CHUCKLING] Let me see him. Check him out in
these big clothes. I know. Everything’s so big on him. [LAUGHS] He’s a
little, little guy. He has a little clubfoot. This little cutie. [LAUGHS] All these doctors
would come in, like the heart doctor. They
were doing echos and doing all these different tests. And everybody wanted
to do their own thing. Dr. Tremonti, she
was kind of like, they can fix all these things,
but he just won’t make it. We’re kind of having some
time with him, but not a lot. So the only thing I can
do is just love on him until that time comes. As a doctor who specializes
in death and dying, I get asked often, how
would you want to die? If I’m really
magical about it, I would say that
I want to live till I’m 100 with
everybody I love healthy. And then I’d like to
magically turn into a baby and die in my mom’s arms.
Because I think there’s not a place in the
world of more peace and unconditional love. [QUIET MUSIC] [BABY FUSSING] I think that we should all
explore a little bit more this death and dying thing. I think that this
is very isolating for people, and people are
uncomfortable around it, but if the solution is that we
just avoid it more and more, then one day, each one of
us will be in the situation and nobody will
be there for us. [QUIET MUSIC] [APPLAUSE] [INAUDIBLE] I’m going to ask
y’all to stand, come up here. And if this little dude,
Giovanni, was only placed on earth just to get us
here in this room for just a moment of love,
this is why we here. We celebrate him tonight. [QUIET MUSIC]
