0:00:00.840,0:00:05.456
I want to introduce you to some[br]very wise kids that I've known,

0:00:05.480,0:00:07.920
but first I want[br]to introduce you to a camel.

0:00:08.720,0:00:12.976
This is Cassie, a therapy camel[br]visiting one of our young patients

0:00:13.000,0:00:14.200
in her room,

0:00:14.920,0:00:16.280
which is pretty magical.

0:00:17.880,0:00:22.560
A friend of mine raises camels[br]at his ranch in the Santa Cruz Mountains.

0:00:23.040,0:00:24.696
He has about eight of them,

0:00:24.720,0:00:26.416
and he started 30 years ago

0:00:26.440,0:00:28.560
because he thought[br]horses were too mundane.

0:00:29.400,0:00:32.776
John is an out-of-the-box thinker,

0:00:32.800,0:00:35.616
which explains why the two of us[br]have been such good friends

0:00:35.640,0:00:36.840
all of our lives.

0:00:38.200,0:00:43.336
Over the years, I've convinced him[br]to shuttle those sweet furry beasts

0:00:43.360,0:00:46.320
up to hang out with our sick kids[br]from time to time.

0:00:47.440,0:00:49.856
Talking to John, I was surprised to learn

0:00:49.880,0:00:55.080
that camels have an average[br]life expectancy of 40 to 50 years.

0:00:55.600,0:00:59.096
The life expectancy of many[br]of the children with whom I work

0:00:59.120,0:01:00.440
is less than a year.

0:01:01.520,0:01:04.575
This is a picture[br]of the George Mark Children's House,

0:01:04.599,0:01:08.096
the first pediatric[br]palliative respite care center

0:01:08.120,0:01:10.376
to open in the United States.

0:01:10.400,0:01:13.376
I founded it in 2004,

0:01:13.400,0:01:16.336
after years of working as a psychologist

0:01:16.360,0:01:19.056
on pediatric intensive care units,

0:01:19.080,0:01:24.096
frustrated with the undignified deaths[br]that so many children experienced

0:01:24.120,0:01:26.040
and their families had to endure.

0:01:26.960,0:01:31.136
As I sat with families whose children[br]were at the end of their lives,

0:01:31.160,0:01:34.816
I was acutely aware of our surroundings.

0:01:34.840,0:01:38.856
While the elevated train[br]rumbled overhead on its track,

0:01:38.880,0:01:43.640
quite literally the room reverberated[br]with each passing train car.

0:01:44.480,0:01:47.856
The lights on the ward[br]were fluorescent and too bright.

0:01:47.880,0:01:51.096
Monitors beeped, as did the elevator,

0:01:51.120,0:01:53.120
noisily announcing its arrival.

0:01:53.880,0:01:55.856
These families were experiencing

0:01:55.880,0:01:59.496
some of the most excruciating[br]moments of their lives,

0:01:59.520,0:02:03.096
and I so wanted them[br]to have a more peaceful place

0:02:03.120,0:02:06.680
in which to say a last goodbye[br]to their young daughters and sons.

0:02:07.480,0:02:09.120
Surely, I thought,

0:02:09.960,0:02:13.576
there must be a better spot[br]than a hospital intensive care unit

0:02:13.600,0:02:15.800
for children at the end of their lives.

0:02:16.720,0:02:18.320
Our children's house

0:02:19.520,0:02:21.520
is calm and nurturing.

0:02:22.040,0:02:24.656
It's a place where families[br]can stay together

0:02:24.680,0:02:27.256
to enjoy quality time with their children,

0:02:27.280,0:02:30.016
many of whom are there for respite stays,

0:02:30.040,0:02:33.576
some with repeated visits[br]over a span of many years.

0:02:33.600,0:02:36.160
We call those kids our frequent flyers.

0:02:38.360,0:02:41.776
Rather than the bright,[br]noisy quarters of the hospital,

0:02:41.800,0:02:44.616
their rooms are calm and comfortable,

0:02:44.640,0:02:47.896
with actual living spaces[br]for the families,

0:02:47.920,0:02:49.696
a sanctuary of gardens

0:02:49.720,0:02:52.216
and a wonderful outdoor playground

0:02:52.240,0:02:55.760
with special structures[br]for children with physical limitations.

0:02:57.040,0:02:59.376
This sweet baby Lars

0:02:59.400,0:03:03.360
came to us directly[br]from a hospital intensive care unit.

0:03:04.440,0:03:07.576
Imagine hearing the heartbreaking news

0:03:07.600,0:03:09.760
that none of us would ever want to hear.

0:03:10.360,0:03:14.096
His parents had been told[br]that Lars had a brain anomaly

0:03:14.120,0:03:16.936
that would keep him from ever swallowing,

0:03:16.960,0:03:18.856
walking, talking

0:03:18.880,0:03:20.560
or developing mentally.

0:03:21.480,0:03:24.456
Recognizing what little chance[br]he had for survival,

0:03:24.480,0:03:27.536
his parents chose[br]to focus on the quality of time

0:03:27.560,0:03:29.040
that they could spend together.

0:03:29.600,0:03:32.176
They moved into[br]one of our family apartments

0:03:32.200,0:03:34.616
and treasured each day that they had,

0:03:34.640,0:03:36.120
which were far too few.

0:03:37.000,0:03:39.856
Lars's life was brief, to be sure,

0:03:39.880,0:03:41.496
mere weeks,

0:03:41.520,0:03:44.056
but it was calm and comfortable.

0:03:44.080,0:03:46.280
He went on hikes with his parents.

0:03:46.920,0:03:49.896
The time that he spent in the pool[br]with our aquatic therapist

0:03:49.920,0:03:52.096
lessened the seizures he was experiencing

0:03:52.120,0:03:53.800
and helped him to sleep at night.

0:03:54.320,0:03:56.376
His family had a peaceful place

0:03:56.400,0:03:58.776
in which to both celebrate his life

0:03:58.800,0:04:00.240
and mourn his death.

0:04:01.040,0:04:04.256
It has been five years[br]since Lars was with us,

0:04:04.280,0:04:06.176
and in that time,

0:04:06.200,0:04:08.536
his family has welcomed

0:04:08.560,0:04:10.720
a daughter and another son.

0:04:11.280,0:04:14.216
They are such a powerful testament

0:04:14.240,0:04:18.399
to the positive outcome that specialized[br]children's hospice care can create.

0:04:19.640,0:04:22.296
Their baby's physical discomfort[br]was well managed,

0:04:22.320,0:04:27.080
giving all of them the gift of time[br]to be together in a beautiful place.

0:04:28.280,0:04:30.296
I'm going to talk to you now

0:04:30.320,0:04:31.536
about the elephant

0:04:31.560,0:04:33.320
rather than the camel in the room.

0:04:35.440,0:04:38.576
Very few people want to talk about death,

0:04:38.600,0:04:42.120
and even fewer about children's death.

0:04:45.680,0:04:47.240
Loss of a child,

0:04:48.080,0:04:50.656
especially for those of us[br]who have our own children,

0:04:50.680,0:04:51.880
is frightening,

0:04:52.800,0:04:54.000
more than frightening,

0:04:54.840,0:04:56.040
paralyzing,

0:04:56.920,0:04:58.120
debilitating,

0:04:58.920,0:05:00.120
impossible.

0:05:01.320,0:05:03.576
But what I've learned is this:

0:05:03.600,0:05:05.616
children don't stop dying

0:05:05.640,0:05:07.616
just because we the adults

0:05:07.640,0:05:10.320
can't comprehend[br]the injustice of losing them.

0:05:11.000,0:05:12.280
And what's more,

0:05:13.520,0:05:15.296
if we can be brave enough

0:05:15.320,0:05:17.176
to face the possibility of death,

0:05:17.200,0:05:19.120
even among the most innocent,

0:05:20.120,0:05:22.800
we gain an unparalleled kind of wisdom.

0:05:24.240,0:05:25.840
Take Crystal, for example.

0:05:27.560,0:05:29.936
She was one of the first children[br]to come for care

0:05:29.960,0:05:31.360
after we opened our doors.

0:05:32.280,0:05:33.936
She was nine when she arrived,

0:05:33.960,0:05:38.296
and her neurologist expected[br]that she might live another two weeks.

0:05:38.320,0:05:40.816
She had an inoperable brain tumor,

0:05:40.840,0:05:43.576
and her decline had really accelerated

0:05:43.600,0:05:45.520
in the week before she came to us.

0:05:46.240,0:05:48.216
After settling into her room,

0:05:48.240,0:05:51.976
dressed entirely in pink and lavender,

0:05:52.000,0:05:56.096
surrounded by the Hello Kitty[br]accessories that she loved,

0:05:56.120,0:05:58.856
she spent the next several days

0:05:58.880,0:06:01.440
winning over the hearts[br]of every staff member.

0:06:02.760,0:06:05.936
Bit by bit, her condition stabilized,

0:06:05.960,0:06:08.376
and then to our astonishment,

0:06:08.400,0:06:10.040
she actually improved.

0:06:11.160,0:06:12.816
There were a variety of factors

0:06:12.840,0:06:16.416
that contributed to Crystal's improvement

0:06:16.440,0:06:20.000
which we later came to call[br]the "George Mark bump,"

0:06:21.120,0:06:23.976
a lovely, not uncommon phenomenon

0:06:24.000,0:06:26.896
where children outlive[br]the prognoses of their illnesses

0:06:26.920,0:06:28.600
if they're outside of the hospital.

0:06:30.280,0:06:33.720
The calmer atmosphere of her surroundings,

0:06:34.520,0:06:39.336
tasty meals that were fixed[br]often to accommodate her requests,

0:06:39.360,0:06:41.040
the resident pets,

0:06:41.640,0:06:45.880
the therapy dog and rabbit[br]spent lots of cozy time with Crystal.

0:06:47.160,0:06:50.096
After she had been with us[br]for about a week,

0:06:50.120,0:06:52.016
she called her grandmother,

0:06:52.040,0:06:53.456
and she said,

0:06:53.480,0:06:57.096
"Gee, I'm staying in a great big house,

0:06:57.120,0:06:59.360
and there's room for you to come, too.

0:07:00.080,0:07:01.736
And guess what?

0:07:01.760,0:07:03.776
You don't have to bring any quarters

0:07:03.800,0:07:06.056
because the washer and dryer are free."

0:07:06.080,0:07:08.256
(Laughter)

0:07:08.280,0:07:11.136
Crystal's grandmother[br]soon arrived from out of town,

0:07:11.160,0:07:15.696
and they spent the remaining[br]four months of Crystal's life

0:07:15.720,0:07:18.176
enjoying very special days together.

0:07:18.200,0:07:22.176
Some days were special because Crystal[br]was outside in her wheelchair

0:07:22.200,0:07:23.480
sitting by the fountain.

0:07:24.040,0:07:28.416
For a little girl who had spent most[br]of the year earlier in a hospital bed,

0:07:28.440,0:07:31.376
being outside counting hummingbirds

0:07:31.400,0:07:33.736
made for an amazing time with her grandma,

0:07:33.760,0:07:34.960
and lots of laughter.

0:07:35.640,0:07:38.176
Other days were special[br]because of the activities

0:07:38.200,0:07:41.040
that our child life specialist[br]created for her.

0:07:41.840,0:07:46.016
Crystal strung beads and made jewelry[br]for everybody in the house.

0:07:46.040,0:07:49.200
She painted a pumpkin[br]to help decorate for Halloween.

0:07:50.360,0:07:54.696
She spent many excited days[br]planning her tenth birthday,

0:07:54.720,0:07:57.440
which of course none of us[br]thought she would ever see.

0:07:59.000,0:08:02.136
All of us wore pink boas for the occasion,

0:08:02.160,0:08:04.696
and Crystal, as you can see,

0:08:04.720,0:08:05.936
queen for a day,

0:08:05.960,0:08:07.480
wore a sparkly tiara.

0:08:08.640,0:08:10.376
One hot morning, I arrived at work

0:08:10.400,0:08:15.896
and Crystal and her partner[br]in crime, Charlie, greeted me.

0:08:15.920,0:08:19.056
With some help, they had set up[br]a lemonade and cookie stand

0:08:19.080,0:08:20.400
outside the front door,

0:08:21.000,0:08:23.240
a very strategic location.

0:08:25.320,0:08:28.696
I asked Crystal the price[br]of the cookie that I had selected,

0:08:28.720,0:08:31.256
and she said, "Three dollars."

0:08:31.280,0:08:35.135
(Laughter)

0:08:35.159,0:08:38.256
I said that seemed a bit high[br]for one cookie.

0:08:38.280,0:08:40.015
(Laughter)

0:08:40.039,0:08:41.240
It was small.

0:08:43.320,0:08:46.016
"I know," she acknowledged with a grin,

0:08:46.040,0:08:47.440
"but I'm worth it."

0:08:49.000,0:08:50.896
And therein lie the words of wisdom

0:08:50.920,0:08:55.400
of a young girl whose brief life[br]forever impacted mine.

0:08:56.800,0:08:58.240
Crystal was worth it,

0:08:59.080,0:09:04.376
and shouldn't every child whose life[br]is shortened by a horrific illness

0:09:04.400,0:09:05.600
be worth it?

0:09:06.040,0:09:08.256
Together, all of us today

0:09:08.280,0:09:11.536
can offer that same specialized care[br]that Crystal received

0:09:11.560,0:09:17.216
by recognizing that children's[br]respite and hospice care

0:09:17.240,0:09:21.600
is a critical component missing[br]from our healthcare landscape.

0:09:23.555,0:09:24.936
It's also interesting to note

0:09:24.960,0:09:26.776
that we are able to provide this care

0:09:26.800,0:09:30.480
at about one third of the cost[br]of a hospital intensive care unit,

0:09:31.320,0:09:34.160
and our families don't see a bill.

0:09:34.880,0:09:37.656
We are ever grateful to the supporters

0:09:37.680,0:09:40.120
who believe in this important work[br]that we're doing.

0:09:42.000,0:09:45.456
The truth is that my colleagues and I

0:09:45.480,0:09:49.056
and the parents and other family members

0:09:49.080,0:09:52.056
who get to experience this special wisdom

0:09:52.080,0:09:53.840
are in a unique position.

0:09:54.880,0:10:00.096
There are only two freestanding[br]pediatric hospices in the United States,

0:10:00.120,0:10:02.816
although I'm happy to report[br]that based on our model,

0:10:02.840,0:10:06.896
there are 18 others[br]under various stages of development.

0:10:06.920,0:10:10.080
(Applause)

0:10:11.440,0:10:16.456
Still, most of the children[br]who die in the United States every year

0:10:16.480,0:10:18.496
die in hospital rooms,

0:10:18.520,0:10:20.936
surrounded by beeping machines

0:10:20.960,0:10:23.056
and anxious, exhausted adults

0:10:23.080,0:10:25.056
who have no other option

0:10:25.080,0:10:28.896
but to say goodbye[br]under those harsh, institutional lights

0:10:28.920,0:10:30.960
and among virtual strangers.

0:10:31.800,0:10:33.936
For comparison's sake,

0:10:33.960,0:10:35.296
the United Kingdom,

0:10:35.320,0:10:39.456
which is a country with about one fifth[br]the population of the United States,

0:10:39.480,0:10:43.096
and about half the size[br]of the state of California,

0:10:43.120,0:10:47.520
has 54 hospice and respite centers.

0:10:49.840,0:10:51.696
Why is that?

0:10:51.720,0:10:56.496
I've asked myself that question[br]obviously many times.

0:10:56.520,0:11:02.016
My best guess is that Americans,[br]with our positive can-do attitude

0:11:02.040,0:11:06.616
hold the expectation[br]that our medical care system will fix it,

0:11:06.640,0:11:11.120
even though it may be a childhood illness[br]for which there is no cure.

0:11:11.760,0:11:15.856
We go to extraordinary measures[br]to keep children alive

0:11:15.880,0:11:19.256
when in fact the greatest kindness[br]that we might give them

0:11:19.280,0:11:22.016
would be a peaceful, pain-free

0:11:22.040,0:11:23.240
end of life.

0:11:24.400,0:11:27.216
The transition from cure to care

0:11:27.240,0:11:30.456
remains a challenging one[br]for many hospital physicians

0:11:30.480,0:11:33.976
whose training has really been[br]about saving lives,

0:11:34.000,0:11:37.600
not about gently guiding the patient[br]to the end of life.

0:11:38.640,0:11:42.176
The dad of a sweet baby[br]for whom we cared at the end of her life

0:11:42.200,0:11:44.736
certainly captured this dichotomy

0:11:44.760,0:11:46.336
when he reflected

0:11:46.360,0:11:50.336
that there are a lot of people[br]to help you bring an infant into the world

0:11:50.360,0:11:53.760
but very few to help you usher a baby out.

0:11:55.120,0:11:58.200
So what is the magic ingredient[br]at George Mark?

0:11:59.160,0:12:03.256
The complex medical diagnoses[br]that bring our young patients to us

0:12:03.280,0:12:06.256
mean that their lives[br]have often been restricted,

0:12:06.280,0:12:09.016
some to a hospital bed[br]for long periods of time,

0:12:09.040,0:12:10.896
others to wheelchairs,

0:12:10.920,0:12:16.160
still others to intensive courses[br]of chemotherapy or rehab.

0:12:17.120,0:12:20.816
We make a practice[br]of ignoring those limitations.

0:12:20.840,0:12:23.056
Our default answer is "yes"

0:12:23.080,0:12:25.840
and our default question is, "Why not?"

0:12:26.480,0:12:28.296
That's why we took a young boy

0:12:28.320,0:12:31.296
who wasn't going to live[br]for another baseball season

0:12:31.320,0:12:33.880
to Game 5 of the World Series.

0:12:34.760,0:12:38.176
That's why we have a talent show[br]put on by the staff and kids

0:12:38.200,0:12:39.816
for family and friends.

0:12:39.840,0:12:44.896
Who wouldn't be enchanted by a young boy[br]playing a piano piece with his feet,

0:12:44.920,0:12:46.440
because his arms are atrophied?

0:12:47.800,0:12:50.040
That's why we have a prom every year.

0:12:51.800,0:12:53.200
It's pretty magical.

0:12:53.800,0:12:55.656
We started the prom

0:12:55.680,0:12:57.296
after hearing a dad lament

0:12:57.320,0:13:01.800
that he would never pin[br]a boutonniere on his son's tuxedo lapel.

0:13:03.480,0:13:05.616
The weeks before the dance,

0:13:05.640,0:13:06.896
the house is in a flurry,

0:13:06.920,0:13:09.696
and I don't know who's more excited,[br]the staff or the kids.

0:13:09.720,0:13:10.856
(Laughter)

0:13:10.880,0:13:12.496
The night of the event

0:13:12.520,0:13:16.976
involves rides in vintage cars,

0:13:17.000,0:13:18.976
a walk on a red carpet

0:13:19.000,0:13:21.496
into the great room,

0:13:21.520,0:13:23.320
a terrific DJ

0:13:24.160,0:13:25.936
and a photographer at the ready

0:13:25.960,0:13:28.496
to capture pictures of these attendees

0:13:28.520,0:13:29.880
and their families.

0:13:30.640,0:13:32.936
At the end of the evening this year,

0:13:32.960,0:13:36.640
one of our young,[br]delightful teenaged girls,

0:13:37.680,0:13:40.000
Caitlin, said to her mom,

0:13:41.640,0:13:44.456
"That was the best night[br]of my whole life."

0:13:44.480,0:13:46.856
And that's just the point,

0:13:46.880,0:13:50.616
to capture the best days and nights,

0:13:50.640,0:13:52.720
to abolish limitations,

0:13:53.520,0:13:55.656
to have your default answer be "yes"

0:13:55.680,0:13:58.720
and your default question be, "Why not?"

0:13:59.800,0:14:02.296
Ultimately life is too short,

0:14:02.320,0:14:05.776
whether we live[br]to be 85 years or just eight.

0:14:05.800,0:14:07.056
Trust me.

0:14:07.080,0:14:08.920
Better yet, trust Sam.

0:14:10.760,0:14:14.856
It's not by pretending[br]that death doesn't exist

0:14:14.880,0:14:16.696
that we keep the people,

0:14:16.720,0:14:19.136
especially the little people that we love,

0:14:19.160,0:14:20.360
safe.

0:14:21.080,0:14:22.616
In the end,

0:14:22.640,0:14:25.856
we can't control how long any of us lives.

0:14:25.880,0:14:27.616
What we can control

0:14:27.640,0:14:30.256
is how we spend our days,

0:14:30.280,0:14:32.000
the spaces we create,

0:14:33.120,0:14:36.360
the meaning and joy that we make.

0:14:36.920,0:14:39.936
We cannot change the outcome,

0:14:39.960,0:14:41.880
but we can change the journey.

0:14:43.680,0:14:45.120
Isn't it time

0:14:47.000,0:14:49.256
to recognize that children deserve

0:14:49.280,0:14:53.656
nothing less than our[br]most uncompromising bravery

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and our wildest imagination.

0:14:57.040,0:14:58.256
Thank you.

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(Applause)