Stories from a home for terminally ill children | Kathy Hull

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

Comments 46

  • Noble calling.

  • sad

  • #NoDislikes !!! 👍👍👍

  • 7th comment. ..(luck one)

  • What did the librarian say to the children?

    Read More

  • That was incredibly moving. I live in the United Kingdom and a cousin of mine was in a hospice for the final 8 months of his life and I am still, even to this day (3 years on), convinced he lived longer than predicted just because of the love he was given in there. I support you 100% in your effort to create more establishments in the US and wish you nothing but good luck.

  • Oh man, I was about to ball like a kid. God bless people like her and the hard work that they do!! <3

  • Screw you, TED. How am I supposed to hide my puffy eyes now.

  • I want to sleep when people tell so slowly and sading

  • i didn't cry. came really really close though. what this lady is doing is amazing.

  • very touching speech mam………

  • To whoever thinks that the US healthcare system is good – these institutions are CHARITIES. That means they operate OUTSIDE healthcare system on donations of few people. Why isn't it part of the system? No profit! Because, you know, everything in the US has to be for profit, from healthcare and education to prisons. Sick people? Profit! No profit? Let them die! People wanting to go to college and improve their lives and the lives of people around them? Put them in debt! Profit! Misguided people, who made mistakes? Profit!!! Not enough profit? Put some more in jails for no reason, like marijuana possession! Or, better, by the color of their skin. Correct them? What are we, charity? Mha! Ha-ha! Make the profit, crush their lives!!! Your system is absolutely and utterly sick. But sure, socialists are the evil bunch.

  • Any negative comments are from heartless trolls. IGNORE THEM DO NOT REPLY

  • What a beautiful soul 💛🌻

  • this lady has a beautiful soul.

  • The world needs more people like her

  • I thought it said 'house for terminally ill chickens' lmao

  • 👏👏👏

  • I'm not crying… I- I've just got something in my eyes…. You're the one who's crying..

  • A truly awesome story and an interesting perspective on the end of life. Just like these kids, the elderly should be able to enjoy the last stages of their life as well.

  • what makes her amazing is when she spoke, she believed in what she said and said it with a passion. she needed to tell this story. One of the best TED talks. amazing…

  • There is still lack of awareness on palliative care in the world, much less specifically for young people. Most people ponder about meaning of life but rarely the meaning of death. If we can be more open to discuss such topics, there can be less shock and denial when we handle this part of our life journey together.

    Hospice care may also be viewed as a privileged form of service for those that can afford. I wonder if poor dying patients also get to enjoy a dignified journey to their end of life.

  • Before death exists, life must exist. And for life to exist, people have to make a person. An animal reproduces, but an intelligent being makes a person. I have not yet understood how one could dare to make a person. I have not yet understood how one could dare to manufacture a person without mastering its manufacture. By what right does an intelligent being make another person? I do not understand that people think they are intelligent and that they make a person! It's totally paradoxical.

  • If only all the money that goes to slaughtering innocent children in the middle east went to science instead, we wouldn't have to experience all of this today. Let's not forget to blame the right people.

  • Didn't ted used to be comedy

  • This lady is a saint

  • Really great talk

  • Google talks are so boring compared to TED talks.

  • This is the best TED talk I've seen yet. Thank you, Kathy.

    I've had the fortune to spend a little bit of time with children with life threatening illnesses and their families through Make A Wish foundation, but not in a hospice environment. The families surrounding these children during these times are going through a combination of emotions that is like no other. Its wonderful that there are at least two locations where children and their families can go that is peaceful. I will look into ways of supporting some of the other efforts in progress so that the number can grow.

  • Hi (sorry for my bad english)

  • I'd like to think her lemon pin is dedicated to Crystal.

  • This is beautiful.

  • Faith in humanity restored.

  • 8:57 I really should stop cutting onions while watching TED Talks…

  • bless you kathy. 💙😊

  • She sounds like marge – but I love her message.

  • Aaaaaaand this is how we know God doesn't exist.

  • my eyes are sweating……

  • She is a modern American Mother Teresa.

  • Kathy Hull you are a hero. What a wonderful service you provide for all those families in deep crisis. To turn that crisis and make it into a lasting piece of art for the heart to cherish. You are a hero. Many blessing to you.

  • such a lovely lady!

  • The voice of Marge Simpson and the heart of an angel…

  • I feel it's important to add that George Mark Children's House was co-founded by Dr. Barbara Beach, an oncologist at UCSF Benioff Children's Hospital Oakland, and Kathy Hull. Barbara and Kathy invested an amazing amount of compassion, kindness, and hope into first building GMCH and then providing care to the patients and their families. Thank you, Barbara and Kathy.

  • Wow thank you very much 😢😢😢😢😭

  • Like, even though their lives are hosed, you bring them so much joy. You go, girl!

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