Stories from a home for terminally ill children
-
0:01 - 0:05I want to introduce you to some
very wise kids that I've known, -
0:05 - 0:08but first I want
to introduce you to a camel. -
0:09 - 0:13This is Cassie, a therapy camel
visiting one of our young patients -
0:13 - 0:14in her room,
-
0:15 - 0:16which is pretty magical.
-
0:18 - 0:23A friend of mine raises camels
at his ranch in the Santa Cruz Mountains. -
0:23 - 0:25He has about eight of them,
-
0:25 - 0:26and he started 30 years ago
-
0:26 - 0:29because he thought
horses were too mundane. -
0:29 - 0:33John is an out-of-the-box thinker,
-
0:33 - 0:36which explains why the two of us
have been such good friends -
0:36 - 0:37all of our lives.
-
0:38 - 0:43Over the years, I've convinced him
to shuttle those sweet furry beasts -
0:43 - 0:46up to hang out with our sick kids
from time to time. -
0:47 - 0:50Talking to John, I was surprised to learn
-
0:50 - 0:55that camels have an average
life expectancy of 40 to 50 years. -
0:56 - 0:59The life expectancy of many
of the children with whom I work -
0:59 - 1:00is less than a year.
-
1:02 - 1:05This is a picture
of the George Mark Children's House, -
1:05 - 1:08the first pediatric
palliative respite care center -
1:08 - 1:10to open in the United States.
-
1:10 - 1:13I founded it in 2004,
-
1:13 - 1:16after years of working as a psychologist
-
1:16 - 1:19on pediatric intensive care units,
-
1:19 - 1:24frustrated with the undignified deaths
that so many children experienced -
1:24 - 1:26and their families had to endure.
-
1:27 - 1:31As I sat with families whose children
were at the end of their lives, -
1:31 - 1:35I was acutely aware of our surroundings.
-
1:35 - 1:39While the elevated train
rumbled overhead on its track, -
1:39 - 1:44quite literally the room reverberated
with each passing train car. -
1:44 - 1:48The lights on the ward
were fluorescent and too bright. -
1:48 - 1:51Monitors beeped, as did the elevator,
-
1:51 - 1:53noisily announcing its arrival.
-
1:54 - 1:56These families were experiencing
-
1:56 - 1:59some of the most excruciating
moments of their lives, -
2:00 - 2:03and I so wanted them
to have a more peaceful place -
2:03 - 2:07in which to say a last goodbye
to their young daughters and sons. -
2:07 - 2:09Surely, I thought,
-
2:10 - 2:14there must be a better spot
than a hospital intensive care unit -
2:14 - 2:16for children at the end of their lives.
-
2:17 - 2:18Our children's house
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2:20 - 2:22is calm and nurturing.
-
2:22 - 2:25It's a place where families
can stay together -
2:25 - 2:27to enjoy quality time with their children,
-
2:27 - 2:30many of whom are there for respite stays,
-
2:30 - 2:34some with repeated visits
over a span of many years. -
2:34 - 2:36We call those kids our frequent flyers.
-
2:38 - 2:42Rather than the bright,
noisy quarters of the hospital, -
2:42 - 2:45their rooms are calm and comfortable,
-
2:45 - 2:48with actual living spaces
for the families, -
2:48 - 2:50a sanctuary of gardens
-
2:50 - 2:52and a wonderful outdoor playground
-
2:52 - 2:56with special structures
for children with physical limitations. -
2:57 - 2:59This sweet baby Lars
-
2:59 - 3:03came to us directly
from a hospital intensive care unit. -
3:04 - 3:08Imagine hearing the heartbreaking news
-
3:08 - 3:10that none of us would ever want to hear.
-
3:10 - 3:14His parents had been told
that Lars had a brain anomaly -
3:14 - 3:17that would keep him from ever swallowing,
-
3:17 - 3:19walking, talking
-
3:19 - 3:21or developing mentally.
-
3:21 - 3:24Recognizing what little chance
he had for survival, -
3:24 - 3:28his parents chose
to focus on the quality of time -
3:28 - 3:29that they could spend together.
-
3:30 - 3:32They moved into
one of our family apartments -
3:32 - 3:35and treasured each day that they had,
-
3:35 - 3:36which were far too few.
-
3:37 - 3:40Lars's life was brief, to be sure,
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3:40 - 3:41mere weeks,
-
3:42 - 3:44but it was calm and comfortable.
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3:44 - 3:46He went on hikes with his parents.
-
3:47 - 3:50The time that he spent in the pool
with our aquatic therapist -
3:50 - 3:52lessened the seizures he was experiencing
-
3:52 - 3:54and helped him to sleep at night.
-
3:54 - 3:56His family had a peaceful place
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3:56 - 3:59in which to both celebrate his life
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3:59 - 4:00and mourn his death.
-
4:01 - 4:04It has been five years
since Lars was with us, -
4:04 - 4:06and in that time,
-
4:06 - 4:09his family has welcomed
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4:09 - 4:11a daughter and another son.
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4:11 - 4:14They are such a powerful testament
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4:14 - 4:18to the positive outcome that specialized
children's hospice care can create. -
4:20 - 4:22Their baby's physical discomfort
was well managed, -
4:22 - 4:27giving all of them the gift of time
to be together in a beautiful place. -
4:28 - 4:30I'm going to talk to you now
-
4:30 - 4:32about the elephant
-
4:32 - 4:33rather than the camel in the room.
-
4:35 - 4:39Very few people want to talk about death,
-
4:39 - 4:42and even fewer about children's death.
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4:46 - 4:47Loss of a child,
-
4:48 - 4:51especially for those of us
who have our own children, -
4:51 - 4:52is frightening,
-
4:53 - 4:54more than frightening,
-
4:55 - 4:56paralyzing,
-
4:57 - 4:58debilitating,
-
4:59 - 5:00impossible.
-
5:01 - 5:04But what I've learned is this:
-
5:04 - 5:06children don't stop dying
-
5:06 - 5:08just because we the adults
-
5:08 - 5:10can't comprehend
the injustice of losing them. -
5:11 - 5:12And what's more,
-
5:14 - 5:15if we can be brave enough
-
5:15 - 5:17to face the possibility of death,
-
5:17 - 5:19even among the most innocent,
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5:20 - 5:23we gain an unparalleled kind of wisdom.
-
5:24 - 5:26Take Crystal, for example.
-
5:28 - 5:30She was one of the first children
to come for care -
5:30 - 5:31after we opened our doors.
-
5:32 - 5:34She was nine when she arrived,
-
5:34 - 5:38and her neurologist expected
that she might live another two weeks. -
5:38 - 5:41She had an inoperable brain tumor,
-
5:41 - 5:44and her decline had really accelerated
-
5:44 - 5:46in the week before she came to us.
-
5:46 - 5:48After settling into her room,
-
5:48 - 5:52dressed entirely in pink and lavender,
-
5:52 - 5:56surrounded by the Hello Kitty
accessories that she loved, -
5:56 - 5:59she spent the next several days
-
5:59 - 6:01winning over the hearts
of every staff member. -
6:03 - 6:06Bit by bit, her condition stabilized,
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6:06 - 6:08and then to our astonishment,
-
6:08 - 6:10she actually improved.
-
6:11 - 6:13There were a variety of factors
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6:13 - 6:16that contributed to Crystal's improvement
-
6:16 - 6:20which we later came to call
the "George Mark bump," -
6:21 - 6:24a lovely, not uncommon phenomenon
-
6:24 - 6:27where children outlive
the prognoses of their illnesses -
6:27 - 6:29if they're outside of the hospital.
-
6:30 - 6:34The calmer atmosphere of her surroundings,
-
6:35 - 6:39tasty meals that were fixed
often to accommodate her requests, -
6:39 - 6:41the resident pets,
-
6:42 - 6:46the therapy dog and rabbit
spent lots of cozy time with Crystal. -
6:47 - 6:50After she had been with us
for about a week, -
6:50 - 6:52she called her grandmother,
-
6:52 - 6:53and she said,
-
6:53 - 6:57"Gee, I'm staying in a great big house,
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6:57 - 6:59and there's room for you to come, too.
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7:00 - 7:02And guess what?
-
7:02 - 7:04You don't have to bring any quarters
-
7:04 - 7:06because the washer and dryer are free."
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7:06 - 7:08(Laughter)
-
7:08 - 7:11Crystal's grandmother
soon arrived from out of town, -
7:11 - 7:16and they spent the remaining
four months of Crystal's life -
7:16 - 7:18enjoying very special days together.
-
7:18 - 7:22Some days were special because Crystal
was outside in her wheelchair -
7:22 - 7:23sitting by the fountain.
-
7:24 - 7:28For a little girl who had spent most
of the year earlier in a hospital bed, -
7:28 - 7:31being outside counting hummingbirds
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7:31 - 7:34made for an amazing time with her grandma,
-
7:34 - 7:35and lots of laughter.
-
7:36 - 7:38Other days were special
because of the activities -
7:38 - 7:41that our child life specialist
created for her. -
7:42 - 7:46Crystal strung beads and made jewelry
for everybody in the house. -
7:46 - 7:49She painted a pumpkin
to help decorate for Halloween. -
7:50 - 7:55She spent many excited days
planning her tenth birthday, -
7:55 - 7:57which of course none of us
thought she would ever see. -
7:59 - 8:02All of us wore pink boas for the occasion,
-
8:02 - 8:05and Crystal, as you can see,
-
8:05 - 8:06queen for a day,
-
8:06 - 8:07wore a sparkly tiara.
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8:09 - 8:10One hot morning, I arrived at work
-
8:10 - 8:16and Crystal and her partner
in crime, Charlie, greeted me. -
8:16 - 8:19With some help, they had set up
a lemonade and cookie stand -
8:19 - 8:20outside the front door,
-
8:21 - 8:23a very strategic location.
-
8:25 - 8:29I asked Crystal the price
of the cookie that I had selected, -
8:29 - 8:31and she said, "Three dollars."
-
8:31 - 8:35(Laughter)
-
8:35 - 8:38I said that seemed a bit high
for one cookie. -
8:38 - 8:40(Laughter)
-
8:40 - 8:41It was small.
-
8:43 - 8:46"I know," she acknowledged with a grin,
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8:46 - 8:47"but I'm worth it."
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8:49 - 8:51And therein lie the words of wisdom
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8:51 - 8:55of a young girl whose brief life
forever impacted mine. -
8:57 - 8:58Crystal was worth it,
-
8:59 - 9:04and shouldn't every child whose life
is shortened by a horrific illness -
9:04 - 9:06be worth it?
-
9:06 - 9:08Together, all of us today
-
9:08 - 9:12can offer that same specialized care
that Crystal received -
9:12 - 9:17by recognizing that children's
respite and hospice care -
9:17 - 9:22is a critical component missing
from our healthcare landscape. -
9:24 - 9:25It's also interesting to note
-
9:25 - 9:27that we are able to provide this care
-
9:27 - 9:30at about one third of the cost
of a hospital intensive care unit, -
9:31 - 9:34and our families don't see a bill.
-
9:35 - 9:38We are ever grateful to the supporters
-
9:38 - 9:40who believe in this important work
that we're doing. -
9:42 - 9:45The truth is that my colleagues and I
-
9:45 - 9:49and the parents and other family members
-
9:49 - 9:52who get to experience this special wisdom
-
9:52 - 9:54are in a unique position.
-
9:55 - 10:00There are only two freestanding
pediatric hospices in the United States, -
10:00 - 10:03although I'm happy to report
that based on our model, -
10:03 - 10:07there are 18 others
under various stages of development. -
10:07 - 10:10(Applause)
-
10:11 - 10:16Still, most of the children
who die in the United States every year -
10:16 - 10:18die in hospital rooms,
-
10:19 - 10:21surrounded by beeping machines
-
10:21 - 10:23and anxious, exhausted adults
-
10:23 - 10:25who have no other option
-
10:25 - 10:29but to say goodbye
under those harsh, institutional lights -
10:29 - 10:31and among virtual strangers.
-
10:32 - 10:34For comparison's sake,
-
10:34 - 10:35the United Kingdom,
-
10:35 - 10:39which is a country with about one fifth
the population of the United States, -
10:39 - 10:43and about half the size
of the state of California, -
10:43 - 10:48has 54 hospice and respite centers.
-
10:50 - 10:52Why is that?
-
10:52 - 10:56I've asked myself that question
obviously many times. -
10:57 - 11:02My best guess is that Americans,
with our positive can-do attitude -
11:02 - 11:07hold the expectation
that our medical care system will fix it, -
11:07 - 11:11even though it may be a childhood illness
for which there is no cure. -
11:12 - 11:16We go to extraordinary measures
to keep children alive -
11:16 - 11:19when in fact the greatest kindness
that we might give them -
11:19 - 11:22would be a peaceful, pain-free
-
11:22 - 11:23end of life.
-
11:24 - 11:27The transition from cure to care
-
11:27 - 11:30remains a challenging one
for many hospital physicians -
11:30 - 11:34whose training has really been
about saving lives, -
11:34 - 11:38not about gently guiding the patient
to the end of life. -
11:39 - 11:42The dad of a sweet baby
for whom we cared at the end of her life -
11:42 - 11:45certainly captured this dichotomy
-
11:45 - 11:46when he reflected
-
11:46 - 11:50that there are a lot of people
to help you bring an infant into the world -
11:50 - 11:54but very few to help you usher a baby out.
-
11:55 - 11:58So what is the magic ingredient
at George Mark? -
11:59 - 12:03The complex medical diagnoses
that bring our young patients to us -
12:03 - 12:06mean that their lives
have often been restricted, -
12:06 - 12:09some to a hospital bed
for long periods of time, -
12:09 - 12:11others to wheelchairs,
-
12:11 - 12:16still others to intensive courses
of chemotherapy or rehab. -
12:17 - 12:21We make a practice
of ignoring those limitations. -
12:21 - 12:23Our default answer is "yes"
-
12:23 - 12:26and our default question is, "Why not?"
-
12:26 - 12:28That's why we took a young boy
-
12:28 - 12:31who wasn't going to live
for another baseball season -
12:31 - 12:34to Game 5 of the World Series.
-
12:35 - 12:38That's why we have a talent show
put on by the staff and kids -
12:38 - 12:40for family and friends.
-
12:40 - 12:45Who wouldn't be enchanted by a young boy
playing a piano piece with his feet, -
12:45 - 12:46because his arms are atrophied?
-
12:48 - 12:50That's why we have a prom every year.
-
12:52 - 12:53It's pretty magical.
-
12:54 - 12:56We started the prom
-
12:56 - 12:57after hearing a dad lament
-
12:57 - 13:02that he would never pin
a boutonniere on his son's tuxedo lapel. -
13:03 - 13:06The weeks before the dance,
-
13:06 - 13:07the house is in a flurry,
-
13:07 - 13:10and I don't know who's more excited,
the staff or the kids. -
13:10 - 13:11(Laughter)
-
13:11 - 13:12The night of the event
-
13:13 - 13:17involves rides in vintage cars,
-
13:17 - 13:19a walk on a red carpet
-
13:19 - 13:21into the great room,
-
13:22 - 13:23a terrific DJ
-
13:24 - 13:26and a photographer at the ready
-
13:26 - 13:28to capture pictures of these attendees
-
13:29 - 13:30and their families.
-
13:31 - 13:33At the end of the evening this year,
-
13:33 - 13:37one of our young,
delightful teenaged girls, -
13:38 - 13:40Caitlin, said to her mom,
-
13:42 - 13:44"That was the best night
of my whole life." -
13:44 - 13:47And that's just the point,
-
13:47 - 13:51to capture the best days and nights,
-
13:51 - 13:53to abolish limitations,
-
13:54 - 13:56to have your default answer be "yes"
-
13:56 - 13:59and your default question be, "Why not?"
-
14:00 - 14:02Ultimately life is too short,
-
14:02 - 14:06whether we live
to be 85 years or just eight. -
14:06 - 14:07Trust me.
-
14:07 - 14:09Better yet, trust Sam.
-
14:11 - 14:15It's not by pretending
that death doesn't exist -
14:15 - 14:17that we keep the people,
-
14:17 - 14:19especially the little people that we love,
-
14:19 - 14:20safe.
-
14:21 - 14:23In the end,
-
14:23 - 14:26we can't control how long any of us lives.
-
14:26 - 14:28What we can control
-
14:28 - 14:30is how we spend our days,
-
14:30 - 14:32the spaces we create,
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14:33 - 14:36the meaning and joy that we make.
-
14:37 - 14:40We cannot change the outcome,
-
14:40 - 14:42but we can change the journey.
-
14:44 - 14:45Isn't it time
-
14:47 - 14:49to recognize that children deserve
-
14:49 - 14:54nothing less than our
most uncompromising bravery -
14:54 - 14:56and our wildest imagination.
-
14:57 - 14:58Thank you.
-
14:58 - 15:02(Applause)
- Title:
- Stories from a home for terminally ill children
- Speaker:
- Kathy Hull
- Description:
-
To honor and celebrate young lives cut short, Kathy Hull founded the first freestanding pediatric palliative care facility in the United States, the George Mark Children's House. Its mission: to give terminally ill children and their families a peaceful place to say goodbye. She shares stories brimming with wisdom, joy, imagination and heartbreaking loss.
- Video Language:
- English
- Team:
- closed TED
- Project:
- TEDTalks
- Duration:
- 15:18
Brian Greene edited English subtitles for Stories from a home for terminally ill children | ||
Brian Greene edited English subtitles for Stories from a home for terminally ill children | ||
Brian Greene edited English subtitles for Stories from a home for terminally ill children | ||
Brian Greene edited English subtitles for Stories from a home for terminally ill children | ||
Brian Greene edited English subtitles for Stories from a home for terminally ill children | ||
Joanna Pietrulewicz accepted English subtitles for Stories from a home for terminally ill children | ||
Joanna Pietrulewicz edited English subtitles for Stories from a home for terminally ill children | ||
Joanna Pietrulewicz edited English subtitles for Stories from a home for terminally ill children |