Kathy Hull: Stories from a home for terminally ill children
Кэти Халл: Истории из дома для неизлечимо больных детей
Kathy Nicholson Hull founded the first freestanding pediatric palliative care center in the US. Full bio
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very wise kids that I've known,
смышлёными детьми, которых я знала,
to introduce you to a camel.
познакомить вас с верблюдом.
visiting one of our young patients
навещающий одну из наших
at his ranch in the Santa Cruz Mountains.
на ранчо в горах Санта-Круз.
horses were too mundane.
have been such good friends
to shuttle those sweet furry beasts
привозить к нашим больным детям
from time to time.
life expectancy of 40 to 50 years.
жизни у верблюдов 40–50 лет.
of the children with whom I work
у многих наших детей
of the George Mark Children's House,
palliative respite care center
педиатрический центр,
that so many children experienced
обстоятельствах многие дети умирают
were at the end of their lives,
этих детей в последние дни их жизни,
rumbled overhead on its track,
дороге над нашими головами,
with each passing train car.
каждого проходящего вагона.
were fluorescent and too bright.
moments of their lives,
to have a more peaceful place
спокойное и умиротворённое место,
to their young daughters and sons.
и попрощаются с дочками и сыновьями.
должно быть место лучше,
than a hospital intensive care unit
терапии в обычной больнице,
can stay together
могут побыть вместе
проведённым с детьми;
over a span of many years.
на протяжении нескольких лет.
«постоянными пассажирами».
noisy quarters of the hospital,
и шумных больничных палат,
for the families,
и для их родственников,
for children with physical limitations.
физическими способностями.
from a hospital intensive care unit.
отделения интенсивной терапии.
ужасную новость,
не хотел бы услышать.
that Lars had a brain anomaly
обнаружили аномалию мозга,
нормально глотать,
he had for survival,
у малыша невелик,
to focus on the quality of time
оставшееся у малыша
one of our family apartments
по водным процедурам
with our aquatic therapist
since Lars was with us,
как Ларс ушёл от нас,
какой положительный результат
children's hospice care can create.
детский хоспис.
was well managed,
дискомфорта у малыша
to be together in a beautiful place.
рядом в прекрасном месте.
who have our own children,
the injustice of losing them.
несправедливость их потери.
to come for care
что жить ей осталось около двух недель.
that she might live another two weeks.
и сиреневые цвета,
accessories that she loved,
of every staff member.
стабилизировалось,
the "George Mark bump,"
«эффектом Джорджа Марка»,
the prognoses of their illnesses
often to accommodate her requests,
на основе её предпочтений,
spent lots of cozy time with Crystal.
for about a week,
в классном большом доме,
soon arrived from out of town,
four months of Crystal's life
проведённым здесь.
was outside in her wheelchair
потому что Кристал могла гулять и сидеть
of the year earlier in a hospital bed,
год провела в больничной палате,
наслаждаться пением птиц
проведённым с бабушкой,
because of the activities
потому что наши сотрудники
created for her.
for everybody in the house.
и делала для всех украшения.
to help decorate for Halloween.
planning her tenth birthday,
планируя празднование своего 10-летия,
thought she would ever see.
что она до него доживёт.
я приехала на работу.
in crime, Charlie, greeted me.
и её «сообщник» Чарли.
a lemonade and cookie stand
стенд с лимонадом и печеньем
of the cookie that I had selected,
сколько оно стоит.
for one cookie.
«Дороговато для одного печенья».
улыбаясь во весь рот. —
маленькой девочки,
forever impacted mine.
очень большое влияние на мою.
is shortened by a horrific illness
не достоин этого?
that Crystal received
respite and hospice care
это то, чего нам так не хватает
from our healthcare landscape.
of a hospital intensive care unit,
интенсивной терапии в больницах.
кто поддерживает нас
that we're doing.
pediatric hospices in the United States,
два автономных детских хосписа,
что по подобию нашего
that based on our model,
under various stages of development.
who die in the United States every year
under those harsh, institutional lights
the population of the United States,
в пять раз меньше, чем в США,
of the state of California,
obviously many times.
верой, что нет ничего невозможного,
with our positive can-do attitude
that our medical care system will fix it,
в итоге справится
for which there is no cure.
to keep children alive
чтобы продлить жизнь детей,
that we might give them
которую мы можем им дать, —
for many hospital physicians
about saving lives,
to the end of life.
for whom we cared at the end of her life
которая попала к нам перед тем,
без сомнения уловил эту грань,
ребёнку помогают десятки рук,
to help you bring an infant into the world
могут помочь только единицы.
at George Mark?
в Доме Джорджа Марка?
that bring our young patients to us
приводит сюда маленьких пациентов,
have often been restricted,
for long periods of time,
of chemotherapy or rehab.
of ignoring those limitations.
for another baseball season
бейсбольного сезона
put on by the staff and kids
для родственников и друзей,
playing a piano piece with his feet,
как мальчик играет на пианино
потому что его руки атрофированы?
мы устраиваем выпускной.
a boutonniere on his son's tuxedo lapel.
бутоньерку на смокинг сына.
the staff or the kids.
персонал или дети.
на ретро-автомобилях,
delightful teenaged girls,
вечер за всю мою жизнь».
of my whole life."
to be 85 years or just eight.
или всего лишь восемь.
that death doesn't exist
что смерть не существует,
most uncompromising bravery
ABOUT THE SPEAKER
Kathy Hull - Pediatric psychologistKathy Nicholson Hull founded the first freestanding pediatric palliative care center in the US.
Why you should listen
With her pioneering spirit and tenacious nature, Dr. Kathy Hull recognized an unmet need in the provision of services to children with incurable medical conditions. Working in a traditional medical environment at a prominent children's hospital, with its emphasis on curative treatment, Hull realized the necessity for a more supportive medical model, and setting, for children at the end of their lives. Her research of pediatric care modalities convinced her that a well-established prototype of pediatric palliative care existed throughout Europe and could be replicated here.
Acting as an architect for creative change, Hull navigated the labyrinth of permits and approvals, as well as managed the design and building of the George Mark Children's House (GMCH). The House opened in 2004 in San Leandro, California, where it's set on five beautifully landscaped acres. Since opening its doors, more than twelve hundred children and their families have been lovingly cared for by the staff of GMCH. Additionally, George Mark has served as the role model for sixteen other entities currently under development throughout the United States. Presently, Dr. Hull is the staff Psychologist and President of the Board of GMCH, as well as being an adjunct staff member at UCSF Benioff Children’s Hospital Oakland.
Among the honors Hull has received for her philanthropy and humanitarianism are Maria Shriver’s Minerva Award; Traditional Home Magazine Classic Woman Award Purpose Prize Fellow and Jefferson Award. She is also a Regent Emeritus of Santa Clara University. Hull and her husband Bill reside in the San Francisco Bay Area and are proud parents of eight offspring and have eight delightful grandchildren.
Kathy Hull | Speaker | TED.com