Kathy Hull: Stories from a home for terminally ill children
キャシー・ハル: 末期小児患者たちのための家からの物語
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,
紹介したいと思います
to introduce you to a camel.
ラクダをご紹介します
visiting one of our young patients
セラピー・ラクダのキャジーが
at his ranch in the Santa Cruz Mountains.
ラクダを育てています
horses were too mundane.
平凡だと思ったからです
自由な発想の持ち主です
have been such good friends
とても良い友達でいるのでしょう
to shuttle those sweet furry beasts
この毛の生えた可愛い動物と
from time to time.
遊ばせてもらっています
life expectancy of 40 to 50 years.
of the children with whom I work
of the George Mark Children's House,
チルドレンズ・ハウス」です
palliative respite care center
that so many children experienced
尊厳を欠く亡くなり方をし
歯がゆさを感じたからです
were at the end of their lives,
家族たちと接した際に
rumbled overhead on its track,
with each passing train car.
文字通り部屋が鳴り響き
were fluorescent and too bright.
moments of their lives,
to have a more peaceful place
もっと穏やかな場所で
to their young daughters and sons.
言ってもらいたいと強く思いました
than a hospital intensive care unit
病院のICUよりも
can stay together
ショートステイです
over a span of many years.
繰り返し訪れる子もいます
「常連さん」と呼びます
noisy quarters of the hospital,
for the families,
for children with physical limitations.
特別な遊具もあります
from a hospital intensive care unit.
直接私たちのもとに来ました
that Lars had a brain anomaly
ラースには脳の異常があり
話したりすることが妨げられ
he had for survival,
to focus on the quality of time
one of our family apartments
with our aquatic therapist
since Lars was with us,
children's hospice care can create.
力強い証拠です
was well managed,
良く管理され
to be together in a beautiful place.
一緒に過ごす時間を贈られました
ほとんどいません
who have our own children,
the injustice of losing them.
可能性に直面できれば
to come for care
最初にケアに来た子の
that she might live another two weeks.
2週間と考えていました
accessories that she loved,
アクセサリーに囲まれて
of every staff member.
掴んでしまいました
the "George Mark bump,"
と呼ぶようになりました
the prognoses of their illnesses
子供たちが当初の予後よりも
often to accommodate her requests,
彼女の希望に合わせて作られ
spent lots of cozy time with Crystal.
心地の良い時間を過ごしました
for about a week,
soon arrived from out of town,
すぐに町に訪ねて来て
four months of Crystal's life
非常に特別な日々を
was outside in her wheelchair
屋外の噴水のそばで過ごす
of the year earlier in a hospital bed,
病院のベッドで過ごした少女にとっては
楽しい時間となりました
because of the activities
スペシャリストが用意した
created for her.
特別な日になりました
for everybody in the house.
皆のためにアクセサリーを作り
to help decorate for Halloween.
ハロウィーンの飾り付けを手伝いました
planning her tenth birthday,
ワクワクした日々を過ごしました
thought she would ever see.
思っていませんでした
ピンクのボアを身に着けて
in crime, Charlie, greeted me.
チャーリーが私を出迎えました
a lemonade and cookie stand
レモネードとクッキーの売店を
of the cookie that I had selected,
値段をクリスタルに尋ねると
for one cookie.
と言いました
彼女はにんまりと笑って認めました
彼女の知恵を見出しました
forever impacted mine.
私の人生に永遠の影響を与えました
is shortened by a horrific illness
人生が縮められたすべての子供たちには
that Crystal received
専門的なケアの提供を可能にしています
respite and hospice care
ホスピス・レスパイトケアが
from our healthcare landscape.
重要な要素だと認識したからです
of a hospital intensive care unit,
約3分の1の費用で提供できます
信じて下さる方々による
that we're doing.
pediatric hospices in the United States,
米国には2つしかありませんが
that based on our model,
under various stages of development.
お知らせできることを嬉しく思います
who die in the United States every year
子供たちの大半は
under those harsh, institutional lights
我が子に別れを告げるしかありません
the population of the United States,
of the state of California,
約半分の大きさですが
54あります
obviously many times.
with our positive can-do attitude
何でもできるさというポジティブな姿勢で
that our medical care system will fix it,
for which there is no cure.
期待するからではないでしょうか
to keep children alive
大変な努力を払いますが
that we might give them
最大の優しさは
for many hospital physicians
難題の一つです
about saving lives,
命を救う訓練であり
to the end of life.
訓練では無いからです
for whom we cared at the end of her life
可愛い赤ちゃんのお父さんは
to help you bring an infant into the world
多くの人々が携わるけれど
非常に少数のスタッフしかいない」
at George Mark?
that bring our young patients to us
抱えて私たちの元にやってきますが
have often been restricted,
制限されてきたことを意味します
for long periods of time,
課せられた子もいれば
課せられた子もいますし
of chemotherapy or rehab.
集中治療を課せられてきた子もいます
of ignoring those limitations.
自由になる先例を作っています
「やろうよ」と
for another baseball season
生きられそうにない男の子を
連れて行きました
put on by the staff and kids
スタッフと子供主催のタレントショーを
playing a piano piece with his feet,
足でピアノを演奏する少年に
a boutonniere on his son's tuxedo lapel.
というお父さんの嘆きを聞いたからです
the staff or the kids.
スタッフなのか子供たちなのか—
delightful teenaged girls,
of my whole life."
to be 85 years or just eight.
8歳までしか生きられなくても同じです
that death doesn't exist
決めることはできません
most uncompromising bravery
思い切った想像力を
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