Kathy Hull: Stories from a home for terminally ill children
Kathy Hull: Berättelser från ett hem för obotligt sjuka barn
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,
för några väldigt kloka barn jag känt,
to introduce you to a camel.
för en kamel.
visiting one of our young patients
som besöker en av våra unga patienter
at his ranch in the Santa Cruz Mountains.
på sin gård i Santa Cruz-bergen.
horses were too mundane.
var för alldagliga.
have been such good friends
så goda vänner
to shuttle those sweet furry beasts
from time to time.
life expectancy of 40 to 50 years.
of the children with whom I work
hos många av barnen jag arbetar med
of the George Mark Children's House,
på George Mark Children's House,
palliative respite care center
avlastningsvårdhemmet för barn
ha arbetat som psykolog
that so many children experienced
över den ovärdiga död
were at the end of their lives,
var i slutskedet av livet,
rumbled overhead on its track,
with each passing train car.
varje gång tåget passerade.
were fluorescent and too bright.
var fluorescerande och för stark.
några av de mest plågsamma stunderna
moments of their lives,
to have a more peaceful place
en mer fridfull plats
to their young daughters and sons.
av sina unga döttrar och söner.
than a hospital intensive care unit
än intensivvårdsavdelningen på ett sjukhus
can stay together
kan vara tillsammans
over a span of many years.
under många år.
noisy quarters of the hospital,
högljudda lokalerna på sjukhuset,
for the families,
for children with physical limitations.
för barn med fysiska begränsningar.
from a hospital intensive care unit.
intensivvårdsavdelningen på sjukhuset.
det förkrossande besked
that Lars had a brain anomaly
att Lars hade en hjärnabnormitet
aldrig skulle kunna svälja,
he had for survival,
han hade att överleva,
to focus on the quality of time
på den kvalitetstid
one of our family apartments
av våra familjelägenheter
with our aquatic therapist
med vår vattenterapeut
since Lars was with us,
sedan Lars var hos oss,
children's hospice care can create.
hospicevård för barn kan skapa.
was well managed,
togs väl omhand,
to be together in a beautiful place.
att vara tillsammans på en vacker plats.
who have our own children,
the injustice of losing them.
i att förlora dem.
to come for care
vi tog hand om
that she might live another two weeks.
kanske skulle leva två veckor till.
som inte gick att operera,
accessories that she loved,
som hon älskade,
of every staff member.
hennes tillstånd,
the "George Mark bump,"
"George Mark-studsen",
the prognoses of their illnesses
för sin sjukdom
often to accommodate her requests,
enligt hennes önskemål,
spent lots of cozy time with Crystal.
tillbringade massor av mystid med Crystal.
for about a week,
soon arrived from out of town,
från en annan stad,
four months of Crystal's life
kvarvarande fyra månader
värdefull tid tillsammans.
was outside in her wheelchair
för att Crystal var utomhus i sin rullstol
of the year earlier in a hospital bed,
större delen av året i en sjukhussäng,
och räkna kolibrier
because of the activities
på grund av de aktiviteter
created for her.
for everybody in the house.
till alla i huset.
to help decorate for Halloween.
som dekoration inför Halloween.
planning her tenth birthday,
med att planera sin tioårsdag,
thought she would ever see.
att hon skulle få uppleva.
in crime, Charlie, greeted me.
och hennes kumpan Charlie.
a lemonade and cookie stand
ett saft- och kakstånd
of the cookie that I had selected,
på kakan jag hade valt,
for one cookie.
forever impacted mine.
för evigt påverkade mitt.
is shortened by a horrific illness
vars liv förkortas av en hemsk sjukdom
that Crystal received
som Crystal fick,
respite and hospice care
och hospicevård för barn
from our healthcare landscape.
som saknas i vår hälsovård.
of a hospital intensive care unit,
för en intensivvårdsplats,
får aldrig någon räkning.
för de som stöttar oss,
that we're doing.
familjemedlemmar
pediatric hospices in the United States,
barnhospice i USA,
that based on our model,
att baserat på vår modell,
under various stages of development.
who die in the United States every year
att de flesta barn som dör i USA varje år,
under those harsh, institutional lights
hårda, institutionella belysningen
the population of the United States,
av USA:s befolkning,
of the state of California,
som staten Kalifornien,
obviously many times.
with our positive can-do attitude
med vår positiva kan-göra-attityd
that our medical care system will fix it,
for which there is no cure.
som är obotligt.
to keep children alive
för att hålla barn vid liv
that we might give them
vi kanske faktiskt kan visa dem
for many hospital physicians
för många sjukhusläkare
about saving lives,
har handlat om att rädda liv,
to the end of life.
till livets slut.
for whom we cared at the end of her life
som vi vårdade vid slutet av hennes liv
to help you bring an infant into the world
som hjälper dig föda ett barn till världen
ledsaga ett barn ut.
at George Mark?
på George Mark?
that bring our young patients to us
som för våra unga patienter till oss,
have often been restricted,
ofta har varit begränsade,
på sjukhus under långa perioder,
for long periods of time,
of chemotherapy or rehab.
har fått intensiva cellgiftsbehandlingar
of ignoring those limitations.
dessa begränsningar.
for another baseball season
ännu en baseboll-säsong,
put on by the staff and kids
som ordnas av personalen och barnen
playing a piano piece with his feet,
som spelar piano med fötterna,
a boutonniere on his son's tuxedo lapel.
en knapphålsblomma på sin sons smoking.
eller barnen är mest uppspelta.
the staff or the kids.
delightful teenaged girls,
of my whole life."
i hela mitt liv."
to be 85 years or just eight.
that death doesn't exist
att döden inte existerar
hur länge någon av oss lever.
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