Kathy Hull: Stories from a home for terminally ill children

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0:11I 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.

1:12This 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 experiencingsome 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.

2:27Our 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 fliers. 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.

3:08This 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.

4:12It 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.

4:39I'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.

5:35Take 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.

6:58After 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."

7:17(Laughter)

7:19Crystal'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.

8:19One 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."

8:42(Laughter)

8:46I said that seemed a bit high for one cookie.

8:49(Laughter)

8:51It was small. "I know," she acknowledged with a grin, "but I'm worth it."

9:00And 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.

9:53The 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.

10:17(Applause)

10:22Still, 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.

12:06So 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.

13:20(Laughter)

13:21The 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?"

14:10Ultimately 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.

15:08Thank you.

15:09(Applause)