0:00:00.660,0:00:05.520
I want to introduce you to some[br]very wise kids that I've known,

0:00:05.520,0:00:09.002
but first I want[br]to introduce you to a camel.

0:00:09.002,0:00:11.666
This is Kazi, a therapy camel[br]visiting one of our young patients

0:00:11.666,0:00:14.604
in her room,

0:00:14.604,0:00:17.034
which is pretty magical.

0:00:17.034,0:00:19.440
A friend of mine

0:00:19.440,0:00:22.999
raises camels at his ranch[br]in the Santa Cruz Mountains.

0:00:22.999,0:00:24.983
He has about eight of them,

0:00:24.983,0:00:27.763
and he started 30 years ago[br]because he thought horses

0:00:27.763,0:00:29.564
were too mundane.

0:00:29.564,0:00:32.361
John is an out-of-the-box thinker,

0:00:32.361,0:00:36.000
which explains why the two of us[br]have been such good friends

0:00:36.000,0:00:38.151
all of our lives.

0:00:38.151,0:00:43.491
Over the years, I've convinced him[br]to shuttle those sweet furry beasts

0:00:43.491,0:00:47.101
up to hang out with our sick kids[br]from time to time.

0:00:47.101,0:00:49.950
Talking to John, I was surprised to learn

0:00:49.950,0:00:55.868
that camels have an average[br]life expectancy of 40 to 50 years.

0:00:55.868,0:00:59.363
The life expectancy of many[br]of the children with whom I work

0:00:59.363,0:01:01.911
is less than a year.

0:01:01.911,0:01:04.931
This is a picture of[br]the George Mark Children's House,

0:01:04.931,0:01:08.308
the first pediatric palliative[br]respite care center

0:01:08.308,0:01:10.669
to open in the United States.

0:01:10.669,0:01:13.567
I founded it in 2004,

0:01:13.567,0:01:16.359
after years of working as a psychologist

0:01:16.359,0:01:19.204
on pediatric intensive care units,

0:01:19.204,0:01:24.253
frustrated with the undignified deaths[br]that so many children experienced

0:01:24.253,0:01:27.220
and their families had to endure.

0:01:27.220,0:01:31.029
As I sat with families whose children[br]were at the end of their lives,

0:01:31.029,0:01:35.044
I was acutely aware of our surroundings.

0:01:35.044,0:01:38.851
While the elevated train[br]rumbled overhead on its track,

0:01:38.851,0:01:44.412
quite literally the room reverberated[br]with each passing train car.

0:01:44.412,0:01:48.148
The lights on the ward[br]were fluorescent and too bright.

0:01:48.148,0:01:51.151
Monitors beeped, as did the elevator,

0:01:51.151,0:01:53.976
noisily announcing its arrival.

0:01:53.976,0:01:57.892
These families were experiencing[br]some of the most excruciating

0:01:57.892,0:01:59.517
moments of their lives,

0:01:59.517,0:02:03.297
and I so wanted them to have[br]a more peaceful place

0:02:03.297,0:02:07.853
in which to say a last goodbye[br]to their young daughters and sons.

0:02:07.853,0:02:09.711
Surely, I thought,

0:02:09.711,0:02:13.894
there must be a better spot[br]than a hospital intensive care unit

0:02:13.894,0:02:16.965
for children at the end of their lives.

0:02:16.965,0:02:22.367
Our children's house[br]is calm and nurturing.

0:02:22.367,0:02:24.982
It's a place where families[br]can stay together

0:02:24.982,0:02:27.554
to enjoy quality time with their children,

0:02:27.554,0:02:30.083
many of whom are there for respite stays,

0:02:30.083,0:02:33.918
some with repeated visits[br]over a span of many years.

0:02:33.918,0:02:37.831
We call those kids our frequent fliers.

0:02:37.831,0:02:41.878
Rather than the bright,[br]noisy quarters of the hospital,

0:02:41.878,0:02:44.987
their rooms are calm and comfortable,

0:02:44.987,0:02:48.239
with actual living spaces[br]for the families,

0:02:48.239,0:02:50.020
a sanctuary of gardens,

0:02:50.020,0:02:51.937
and a wonderful outdoor playground

0:02:51.937,0:02:57.114
with special structures for children[br]with physical limitations.

0:02:57.114,0:02:59.487
This sweet baby Lars

0:02:59.487,0:03:03.952
came to us directly from[br]hospital intensive care unit.

0:03:03.952,0:03:07.845
Imagine hearing the heartbreaking news

0:03:07.845,0:03:10.645
that none of us would ever want to hear.

0:03:10.645,0:03:14.173
His parents had been told that Lars[br]had a brain anomaly

0:03:14.173,0:03:17.243
that would keep him from ever swallowing,

0:03:17.243,0:03:19.052
walking, talking,

0:03:19.052,0:03:21.768
or developing mentally.

0:03:21.768,0:03:24.778
Recognizing what little chance[br]he had for survival,

0:03:24.778,0:03:27.449
his parents chose to focus[br]on the quality of time

0:03:27.449,0:03:29.797
that they could spend together.

0:03:29.797,0:03:32.436
They moved into[br]one of our family apartments

0:03:32.436,0:03:34.995
and treasured each day that they had,

0:03:34.995,0:03:37.203
which were far too few.

0:03:37.203,0:03:40.158
Lars's life was brief, to be sure,

0:03:40.158,0:03:41.739
mere weeks,

0:03:41.739,0:03:44.276
but it was calm and comfortable.

0:03:44.276,0:03:46.692
He went on hikes with his parents.

0:03:46.692,0:03:50.045
The time that he spent in the pool[br]with our aquatic therapist

0:03:50.045,0:03:52.649
lessened the seizures he was experiencing

0:03:52.649,0:03:54.642
and helped him to sleep at night.

0:03:54.642,0:03:56.607
His family had a peaceful place

0:03:56.607,0:03:59.020
in which to both celebrate his life

0:03:59.020,0:04:01.292
and mourn his death.

0:04:01.292,0:04:04.580
It has been five years[br]since Lars was with us,

0:04:04.580,0:04:06.050
and in that time,

0:04:06.050,0:04:08.165
his family has welcomed

0:04:08.165,0:04:11.413
a daughter and another son.

0:04:11.413,0:04:14.003
They are such a powerful testament

0:04:14.003,0:04:19.290
to the positive outcome that specialized[br]children's hospice care can create.

0:04:19.290,0:04:23.603
Their baby's physical discomfort[br]was well-managed, giving all of them

0:04:23.603,0:04:28.594
the gift of time to be together[br]in a beautiful place.

0:04:28.594,0:04:30.582
I'm going to talk to you now

0:04:30.582,0:04:31.985
about the elephant

0:04:31.985,0:04:34.452
rather than the camel in the room.

0:04:34.452,0:04:38.593
Very few people want to talk about death,

0:04:38.593,0:04:41.850
and even fewer about children's death.

0:04:45.927,0:04:48.207
Loss of a child,

0:04:48.207,0:04:50.921
especially for those of us[br]who have our own children,

0:04:50.921,0:04:52.492
is frightening,

0:04:52.492,0:04:54.905
more than frightening,

0:04:54.905,0:04:56.817
paralyzing,

0:04:56.817,0:04:59.015
debilitating,

0:04:59.015,0:05:01.322
impossible.

0:05:01.322,0:05:03.820
But what I've learned is this:

0:05:03.820,0:05:06.002
children don't stop dying

0:05:06.002,0:05:08.014
just because we the adults

0:05:08.014,0:05:11.270
can't comprehend the Injustice[br]of losing them.

0:05:11.270,0:05:13.307
And what's more,

0:05:13.307,0:05:15.559
if we can be brave enough

0:05:15.559,0:05:17.496
to face the possibility of death,

0:05:17.496,0:05:19.661
even among the most innocent,

0:05:19.661,0:05:23.810
we gain an unparalleled kind of wisdom.

0:05:23.810,0:05:27.204
Take Crystal, for example.

0:05:27.204,0:05:29.797
She was one of the first children[br]to come for care

0:05:29.797,0:05:32.159
after we opened our doors.

0:05:32.159,0:05:34.448
She was nine when she arrived,

0:05:34.448,0:05:38.621
and her neurologist expected[br]that she might live another two weeks.

0:05:38.621,0:05:41.162
She had an inoperable brain tumor,

0:05:41.162,0:05:43.868
and her decline had really accelerated

0:05:43.868,0:05:46.490
in the week before she came to us.

0:05:46.490,0:05:48.556
After settling into her room,

0:05:48.556,0:05:52.097
dressed entirely in pink and lavender,

0:05:52.097,0:05:56.422
surrounded by the Hello Kitty[br]accessories that she loved,

0:05:56.422,0:05:58.934
she spent the next several days

0:05:58.934,0:06:02.363
winning over the hearts[br]of every staff member.

0:06:02.363,0:06:06.257
Bit by bit, her condition stabilized,

0:06:06.257,0:06:08.070
and then to our astonishment,

0:06:08.070,0:06:11.249
she actually improved.

0:06:11.249,0:06:13.999
There were a variety of factors[br]that contributed

0:06:13.999,0:06:18.514
to Crystal's improvement[br]which we later came to call

0:06:18.514,0:06:21.399
the George Mark bump,

0:06:21.399,0:06:24.417
a lovely,. not uncommon phenomenon

0:06:24.417,0:06:26.202
where children outlive the prognoses

0:06:26.202,0:06:29.606
of their illnesses if they're[br]outside of the hospital.

0:06:29.606,0:06:34.409
The calmer atmosphere of her surroundings,

0:06:34.409,0:06:39.626
tasty meals that were fixed[br]often to accommodate her requests,

0:06:39.626,0:06:41.962
the resident pets.

0:06:41.962,0:06:47.421
The therapy dog and rabbit[br]spent lots of cozy time with Crystal.

0:06:47.421,0:06:50.426
After she had been with us[br]for about a week,

0:06:50.426,0:06:52.147
she called her grandmother,

0:06:52.147,0:06:54.331
and she said,

0:06:54.331,0:06:57.439
"Gee, I'm staying in a great big house,

0:06:57.439,0:06:59.740
and there's room for you to come too.

0:06:59.740,0:07:02.067
And guess what?

0:07:02.067,0:07:04.004
You don't have to bring any quarters

0:07:04.004,0:07:06.547
because the washer and dryer are free."

0:07:06.547,0:07:08.568
(Laughter)

0:07:08.568,0:07:11.569
Crystal's grandmother soon arrived[br]from out of town,

0:07:11.569,0:07:14.134
and they spent the remaining four months

0:07:14.134,0:07:18.515
of Crystal's live enjoying[br]very special days together.

0:07:18.515,0:07:22.412
Some days were special because Crystal[br]was outside in her wheelchair

0:07:22.412,0:07:24.298
sitting by the fountain.

0:07:24.298,0:07:27.672
For a little girl who had spent[br]most of the year earlier

0:07:27.672,0:07:29.772
in a hospital bed, being outside

0:07:29.772,0:07:31.369
counting hummingbirds

0:07:31.369,0:07:34.044
made for an amazing time with her grandma,

0:07:34.044,0:07:35.765
and lots of laughter.

0:07:35.765,0:07:38.165
Other days were special because[br]of the activities

0:07:38.165,0:07:41.671
that our child life specialist[br]created for her.

0:07:41.671,0:07:44.198
Crystal strung beads and made jewelry

0:07:44.198,0:07:46.428
for everybody in the house.

0:07:46.428,0:07:49.973
She painted a pumpkin to help[br]decorate for Halloween.

0:07:49.973,0:07:55.070
She spent many excited days[br]planning her tenth birthday,

0:07:55.070,0:07:58.811
which of course none of us[br]thought she would ever see.

0:07:58.811,0:08:02.220
All of us wore pink boas for the occasion,

0:08:02.220,0:08:05.026
and Crystal, as you can see,

0:08:05.026,0:08:06.271
queen for a day,

0:08:06.271,0:08:08.877
wore a sparkly tiara.

0:08:08.877,0:08:10.696
One hot morning, I arrived at work

0:08:10.696,0:08:15.916
and Crystal and her partner[br]in crime Charlie greeted me.

0:08:15.916,0:08:19.306
With some help, they had set up[br]a lemonade and cookie stand

0:08:19.306,0:08:20.984
outside the front door,

0:08:20.984,0:08:24.174
a very strategic location.

0:08:24.174,0:08:29.039
I asked Crystal the price[br]of the cookie that I had selected,

0:08:29.039,0:08:31.615
and she said, "Three dollars."

0:08:31.615,0:08:35.150
(Laughter)

0:08:35.150,0:08:38.271
I said that seemed a bit high[br]for one cookie.

0:08:38.271,0:08:40.098
(Laughter)

0:08:40.098,0:08:41.499
It was small.

0:08:41.499,0:08:46.014
"I know," she acknowledged with a grin,

0:08:46.014,0:08:49.281
"but I'm worth it."

0:08:49.281,0:08:53.761
And therein lie the words of wisdom[br]of a young girl whose brief life

0:08:53.761,0:08:57.022
forever impacted mine.

0:08:57.022,0:08:59.415
Crystal was worth it,

0:08:59.415,0:09:04.493
and shouldn't every child whose life[br]is shortened by a horrific illness

0:09:04.493,0:09:06.348
be worth it?

0:09:06.348,0:09:08.275
Together, all of us today

0:09:08.275,0:09:10.607
can offer that same specialized care

0:09:10.607,0:09:13.221
that Crystal received by recognizing

0:09:13.221,0:09:16.696
that children's respite and hospice care

0:09:16.696,0:09:22.986
is a critical component missing[br]from our healthcare landscape.

0:09:22.986,0:09:25.111
It's also interesting to note

0:09:25.111,0:09:27.001
that we are able to provide this care

0:09:27.001,0:09:31.609
at about one third of the cost[br]of a hospital intensive care unit,

0:09:31.609,0:09:34.976
and our families don't see a bill.

0:09:34.976,0:09:39.242
We are ever grateful to the supporters[br]who believe in this important work

0:09:39.242,0:09:42.065
that we're doing.

0:09:42.065,0:09:45.281
The truth is that my colleagues and I

0:09:45.281,0:09:49.030
and the parents and other family members

0:09:49.030,0:09:52.336
who get to experience this special wisdom

0:09:52.336,0:09:54.981
are in a unique position.

0:09:54.981,0:10:00.055
There are only two free-standing[br]pediatric hospices in the United States,

0:10:00.055,0:10:03.105
although I'm happy to report[br]that based on our model,

0:10:03.105,0:10:06.903
there are 18 others under various[br]stages of development.

0:10:06.903,0:10:10.177
(Applause)

0:10:11.691,0:10:16.350
Still, most of the children[br]who die in the United States every year

0:10:16.350,0:10:18.666
die in hospital rooms,

0:10:18.666,0:10:20.989
surrounded by beeping machines

0:10:20.989,0:10:23.398
and anxious, exhausted adults

0:10:23.398,0:10:25.163
who have no other option

0:10:25.163,0:10:28.878
but to say goodbye under those harsh,[br]institutional lights

0:10:28.878,0:10:31.682
and among virtual strangers.

0:10:31.682,0:10:33.637
For comparison's sake,

0:10:33.637,0:10:38.097
the United Kingdom, which is a country[br]with about one fifth the population

0:10:38.097,0:10:39.774
of the United States,

0:10:39.774,0:10:42.969
and about half the size[br]of the state of California,

0:10:42.969,0:10:48.186
has 54 hospice and respite centers.

0:10:48.186,0:10:52.030
Why is that?

0:10:52.030,0:10:56.597
I've asked myself that question[br]obviously many times.

0:10:56.597,0:11:02.291
My best guess is that Americans,[br]with our positive can-do attitude

0:11:02.291,0:11:06.334
hold the expectation that our[br]medical care system will fix it,

0:11:06.334,0:11:12.083
even though it may be a childhood illness[br]for which there is no cure.

0:11:12.083,0:11:15.870
We go to extraordinary measures[br]to keep children alive

0:11:15.870,0:11:19.282
when in fact the greatest kindness[br]that we might give them

0:11:19.282,0:11:21.932
would be a peaceful, pain-free

0:11:21.932,0:11:24.129
end of life.

0:11:24.129,0:11:27.262
The transition from cure to care

0:11:27.262,0:11:30.758
remains a challenging one[br]for many hospital physicians

0:11:30.758,0:11:34.304
whose training has really been[br]about saving lives,

0:11:34.304,0:11:38.697
not about gently guiding the patient[br]to the end of life.

0:11:38.697,0:11:42.449
The dad of a sweet baby for whom[br]we cared at the end of her life

0:11:42.449,0:11:44.903
certainly captured this dichotomy

0:11:44.903,0:11:46.339
when he reflected

0:11:46.339,0:11:50.369
that there are a lot of people to help you[br]bring an infant into the world

0:11:50.369,0:11:55.094
but very few to help you usher a baby out.

0:11:55.094,0:11:59.392
So what is the magic ingredient[br]at George Mark?

0:11:59.392,0:12:03.495
The complex medical diagnoses[br]that bring our young patients to us

0:12:03.495,0:12:06.546
mean that their lives[br]have often been restricted,

0:12:06.546,0:12:09.259
some to a hospital bed[br]for long periods of time,

0:12:09.259,0:12:10.928
others to wheelchairs,

0:12:10.928,0:12:17.442
still others to intensive courses[br]of chemotherapy or rehab.

0:12:17.442,0:12:21.075
We make a practice[br]of ignoring those limitations.

0:12:21.075,0:12:23.385
Our default answer is yes,

0:12:23.385,0:12:26.776
and our default question is why not?

0:12:26.776,0:12:29.643
That's why we took a young boy[br]who wasn't going to live

0:12:29.643,0:12:31.338
for another baseball season

0:12:31.338,0:12:34.284
to Game 5 of the World Series.

0:12:34.284,0:12:38.410
That's why we have a talent show[br]put on by the staff and kids

0:12:38.410,0:12:40.203
for family and friends.

0:12:40.203,0:12:43.647
Who wouldn't be enchanted[br]by a young boy playing the piano piece

0:12:43.647,0:12:45.094
with his feet,

0:12:45.094,0:12:47.289
because his arms are atrophied?

0:12:47.289,0:12:49.838
That's why we have a prom every year.

0:12:49.838,0:12:53.918
It's pretty magical.

0:12:53.918,0:12:55.568
We started the prom

0:12:55.568,0:12:57.542
after hearing a dad lament

0:12:57.542,0:13:01.441
that he would never pin[br]a boutonnière on his son's tuxedo lapel.

0:13:01.441,0:13:05.007
The weeks before the dance,

0:13:05.007,0:13:07.335
the house is in a flurry,

0:13:07.335,0:13:11.042
and I don't know who's more excited,[br]the staff or the kids.

0:13:11.042,0:13:12.764
The night of the event

0:13:12.764,0:13:16.795
involves rides in vintage cars,

0:13:16.795,0:13:19.333
a walk on a red carpet

0:13:19.333,0:13:21.847
into the great room,

0:13:21.847,0:13:24.407
a terrific DJ,

0:13:24.407,0:13:26.285
and a photographer at the ready

0:13:26.285,0:13:28.819
to capture pictures of these attendees

0:13:28.819,0:13:30.901
and their families.

0:13:30.901,0:13:33.968
At the end of the evening this year,[br]one of our young,

0:13:33.968,0:13:37.119
delightful teenaged girls,

0:13:37.119,0:13:40.663
Caitlin, said to her mom,

0:13:40.663,0:13:44.829
"That was the best night[br]of my whole life."

0:13:44.829,0:13:46.902
And that's just the point,

0:13:46.902,0:13:50.401
to capture the best days and nights,

0:13:50.401,0:13:53.291
to abolish limitations,

0:13:53.291,0:13:55.863
to have your default answer be yes

0:13:55.863,0:13:59.255
and your default question be why not.

0:14:00.043,0:14:02.613
Ultimately life is too short,

0:14:02.613,0:14:06.056
whether we live[br]to be 85 years or just eight.

0:14:06.056,0:14:07.332
Trust me.

0:14:07.332,0:14:10.082
Better yet, trust Sam.

0:14:10.082,0:14:14.678
It's not by pretending[br]that death doesn't exist

0:14:14.678,0:14:16.453
that we keep the people,

0:14:16.453,0:14:19.408
especially the little people that we love,

0:14:19.408,0:14:21.079
safe.

0:14:21.079,0:14:22.457
In the end,

0:14:22.457,0:14:25.937
we can't control how long any of us lives.

0:14:25.937,0:14:27.626
What we can control

0:14:27.626,0:14:29.984
is how we spend our days,

0:14:29.984,0:14:32.471
the spaces we create,

0:14:32.471,0:14:37.011
the meaning and joy that we make.

0:14:37.011,0:14:40.244
We cannot change the outcome,

0:14:40.244,0:14:42.165
but we can change the journey.

0:14:43.986,0:14:47.222
Isn't it time

0:14:47.222,0:14:49.489
to recognize that children deserve

0:14:49.489,0:14:54.009
nothing less than our[br]most uncompromising [??]

0:14:54.009,0:14:57.293
and our wildest imagination.

0:14:57.293,0:14:58.575
Thank you.

0:14:58.575,0:15:01.871
(Applause)