Kathy Hull: Stories from a home for terminally ill children
Кеті Халл: Історії з будинку для невиліковно хворих діток.
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,
мудрими дітками, яких я знаю.
to introduce you to a camel.
visiting one of our young patients
відвідує одну з наших пацієнток
at his ranch in the Santa Cruz Mountains.
фермі у горах Санта-Крус.
horses were too mundane.
have been such good friends
to shuttle those sweet furry beasts
відправляти цих милих пухнастих створінь
from time to time.
хворими дітками.
life expectancy of 40 to 50 years.
живуть 40-50 років.
of the children with whom I work
of the George Mark Children's House,
ім. Джорджа Марка,
palliative respite care center
психологом
інтенсивної терапії,
that so many children experienced
смерть діток,
як від цього страждали їх рідні.
were at the end of their lives,
дітей, які помирали,
що нас оточувало.
rumbled overhead on its track,
with each passing train car.
над нашими головами,
та надто яскравим.
were fluorescent and too bright.
moments of their lives,
to have a more peaceful place
спокійніше місце, де вони
to their young daughters and sons.
доньками та синами.
than a hospital intensive care unit
дні свого життя.
can stay together
з їхніми дітьми,
щоб набратися сил.
over a span of many years.
протягом багатьох років.
постійними пасажирами.
noisy quarters of the hospital,
лікарняних палат,
for the families,
for children with physical limitations.
з обмеженими можливостями.
from a hospital intensive care unit.
відділення інтенсивної терапії.
that Lars had a brain anomaly
аномалія мозку,
he had for survival,
малий шанс на виживання,
to focus on the quality of time
вирішили зосередитися на часі,
one of our family apartments
сімейних номерів
with our aquatic therapist
у басейні
від яких він страждав,
since Lars was with us,
Ларс був із нами,
children's hospice care can create.
позитивно вплинути на ситуацію.
приділили належну увагу,
was well managed,
to be together in a beautiful place.
проведеним разом, у красивому місці.
хочуть говорити про смерть,
who have our own children,
the injustice of losing them.
з несправедливістю втрати.
to come for care
that she might live another two weeks.
що їй лишилося жити два тижні.
accessories that she loved,
які вона просто обожнювала,
of every staff member.
усіх з нашого персоналу.
the "George Mark bump,"
"Поштовх Джорда Марка".
the prognoses of their illnesses
прогнозовано їхньою хворобою,
often to accommodate her requests,
за її бажанням,
spent lots of cozy time with Crystal.
з Крістал багато затишних годин.
for about a week,
soon arrived from out of town,
зі свого міста,
four months of Crystal's life
4 місяці життя Крістал,
was outside in her wheelchair
Крістал сиділа у своєму візку
of the year earlier in a hospital bed,
року у лікарняному ліжку,
because of the activities
created for her.
for everybody in the house.
прикраси для усіх в будинку.
to help decorate for Halloween.
planning her tenth birthday,
плануючи свій 10-ий день народження,
thought she would ever see.
що вона його зустріне.
ми всі вдягнули рожеві боа,
на роботу
in crime, Charlie, greeted me.
Чарлі, зустріли мене.
автомат для продажу лимонаду та печива
a lemonade and cookie stand
of the cookie that I had selected,
яке я вибрала.
for one cookie.
для одного печивка.
forever impacted mine.
чиє коротке життя назавжди змінило моє.
is shortened by a horrific illness
чиє життя вкоротила
that Crystal received
догляд, який отримала Крістал,
respite and hospice care
from our healthcare landscape.
якого не вистачає в нашій медицині.
of a hospital intensive care unit,
ніж відділення інтенсивної терапії.
наші сім'ї не платять ні копійки.
хто нас підтримує,
that we're doing.
мудрості,
pediatric hospices in the United States,
педіатричних хоспіси.
that based on our model,
що, на основі нашої моделі,
under various stages of development.
які зараз на різних стадіях будівництва.
who die in the United States every year
які помирають щороку в США,
under those harsh, institutional lights
штучному освітленні
the population of the United States,
ніж у США,
of the state of California,
меншій за штат Каліфорнія,
obviously many times.
with our positive can-do attitude
типу ми все можемо,
that our medical care system will fix it,
обслуговування всіх вилікує,
for which there is no cure.
захворювання, для якого немає ліків.
to keep children alive
щоб підтримувати життя в наших дітях,
that we might give them
зробити для них - це подарувати
for many hospital physicians
багатьох лікарів,
about saving lives,
to the end of life.
до кінця його життя.
for whom we cared at the end of her life
вкінці її життя,
to help you bring an infant into the world
прийти в цей світ,
його покинути.
at George Mark?
хоспісу ім. Джорджа Марка?
that bring our young patients to us
маленьких пацієнтів до нас,
have often been restricted,
for long periods of time,
of chemotherapy or rehab.
чи реабілітації.
of ignoring those limitations.
for another baseball season
бейсбольного сезону,
put on by the staff and kids
шоу талантів
playing a piano piece with his feet,
яий грає на піаніно пальцями ніг,
випускний вечір.
a boutonniere on his son's tuxedo lapel.
на лацкан синового смокінга.
the staff or the kids.
хто більш схвильований - персонал чи діти.
delightful teenaged girls,
of my whole life."
мого життя".
to be 85 years or just eight.
that death doesn't exist
кожен з нас житиме.
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