Kathy Hull: Stories from a home for terminally ill children
凱西·霍爾: 來自臨終兒童看護中心的故事
Kathy Nicholson Hull founded the first freestanding pediatric palliative care center in the US. Full bio
Double-click the English transcript below to play the video.
當中非常聰明的孩子,
very wise kids that I've known,
to introduce you to a camel.
向你們介紹一隻駱駝。
visiting one of our young patients
我們年幼病人的治療駱駝,
at his ranch in the Santa Cruz Mountains.
在他的牧場裡飼養駱駝。
horses were too mundane.
關係如此好的朋友,
have been such good friends
to shuttle those sweet furry beasts
將他那些可愛的駱駝們帶出牧場,
病著的孩子互動遊戲。
from time to time.
life expectancy of 40 to 50 years.
of the children with whom I work
他們的壽命很多都
of the George Mark Children's House,
palliative respite care center
兒童安寧及喘息照護中心。
毫無尊嚴的死亡,
that so many children experienced
were at the end of their lives,
陪伴他們的孩子度過最後的時光,
那些嘈雜聲音:
rumbled overhead on its track,
with each passing train car.
were fluorescent and too bright.
moments of their lives,
能在一個比較寧靜的地方,
to have a more peaceful place
to their young daughters and sons.
than a hospital intensive care unit
更好的地方,
can stay together
over a span of many years.
我們的飛行常客。
noisy quarters of the hospital,
for the families,
準備的特殊設備。
for children with physical limitations.
from a hospital intensive care unit.
that Lars had a brain anomaly
he had for survival,
是多麼渺小之後,
to focus on the quality of time
one of our family apartments
with our aquatic therapist
since Lars was with us,
多大的正面效果。
children's hospice care can create.
was well managed,
身體上的不舒服,
享受禮物般的相處時間。
to be together in a beautiful place.
(不願談的困境)
who have our own children,
the injustice of losing them.
to come for care
還有兩周的生命。
that she might live another two weeks.
accessories that she loved,
of every staff member.
「喬治·馬克的碰撞火花」,
the "George Mark bump,"
但並非罕見的現象。
the prognoses of their illnesses
often to accommodate her requests,
spent lots of cozy time with Crystal.
許多舒適時光都提供了療效。
for about a week,
很棒的房子裡,
都是免費的。」
soon arrived from out of town,
來到了我們這裡,
four months of Crystal's life
was outside in her wheelchair
因為水晶坐著輪椅來到外面,
of the year earlier in a hospital bed,
躺在醫院病床的小女孩來說,
because of the activities
所準備的活動。
created for her.
for everybody in the house.
我們每個人的首飾。
做萬聖節裝飾。
to help decorate for Halloween.
planning her tenth birthday,
她的十歲生日派對,
thought she would ever see.
in crime, Charlie, greeted me.
a lemonade and cookie stand
一個賣檸檬汁和餅乾的小攤位,
of the cookie that I had selected,
for one cookie.
永遠影響著我。
forever impacted mine.
is shortened by a horrific illness
縮短生命的孩子,
一樣的特殊看護,
that Crystal received
到兒童臨終舒緩看護治療,
respite and hospice care
缺失的一個項目。
from our healthcare landscape.
加護中心的三分之一。
of a hospital intensive care unit,
that we're doing.
pediatric hospices in the United States,
兒童臨終照護中心。
採用我們的模式,
that based on our model,
不同階段的建設中。
under various stages of development.
who die in the United States every year
和陌生人的注視下,
under those harsh, institutional lights
the population of the United States,
of the state of California,
obviously many times.
with our positive can-do attitude
它會逐漸完善這個缺失的期許,
that our medical care system will fix it,
for which there is no cure.
to keep children alive
延長孩子的生命,
最好的禮物,
that we might give them
還是一種挑戰。
for many hospital physicians
about saving lives,
to the end of life.
他們的病人走向生命結束。
for whom we cared at the end of her life
to help you bring an infant into the world
帶到這個世界來,
at George Mark?
神奇的成分呢?
that bring our young patients to us
那些複雜的診斷,
have often been restricted,
很長一段時間,
for long periods of time,
of chemotherapy or rehab.
of ignoring those limitations.
「為什麼不可以?」
看護的一個年幼的男孩,
for another baseball season
下一個棒球賽季,
(註:大約 10 月底)。
put on by the staff and kids
舉辦了才藝秀,
彈奏鋼琴的小男孩而動容,
playing a piano piece with his feet,
都有畢業舞會,
a boutonniere on his son's tuxedo lapel.
燕尾服上為他釘上胸花。
the staff or the kids.
員工們還是孩子們。
delightful teenaged girls,
of my whole life."
「為什麼不可以?」
還是只有 8 歲,
to be 85 years or just eight.
that death doesn't exist
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