Kathy Hull: Stories from a home for terminally ill children
Kathy Hull: Priče iz doma za smrtno bolesnu djecu
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.
very wise kids that I've known,
vrlo mudrom djecom koju sam upoznala,
to introduce you to a camel.
upoznati s jednom devom.
visiting one of our young patients
posjetu jednoj našoj mladoj pacijentici
at his ranch in the Santa Cruz Mountains.
svom ranču u planinama Santa Cruz.
horses were too mundane.
presvakodnevni.
have been such good friends
dvoje tako dobri prijatelji
to shuttle those sweet furry beasts
lansira te slatke dlakave zvijeri
from time to time.
djecom s vremena na vrijeme.
iznenadilo me
life expectancy of 40 to 50 years.
vijek od 40 do 50 godina.
of the children with whom I work
s kojom ja radim
of the George Mark Children's House,
Georgea Marka,
palliative respite care center
palijativnu njegu i boravak
radila kao psiholog
intenzivne njege,
that so many children experienced
smrću koju su brojna djeca doživjela
morale nositi.
were at the end of their lives,
čija djeca su bila na samrti,
rumbled overhead on its track,
po tračnicama,
with each passing train car.
u sobi.
were fluorescent and too bright.
florescentna i prejaka.
dizalo također,
moments of their lives,
svojih života,
to have a more peaceful place
imaju mirnije mjesto
to their young daughters and sons.
mladim kćerima i sinovima.
than a hospital intensive care unit
intenzivnog odjela bolnice
can stay together
mogu ostati zajedno
sa svojom djecom,
na boravku,
over a span of many years.
kroz dulji niz godina.
čestim letačima.
noisy quarters of the hospital,
odjeljaka bolnice,
i udobne,
for the families,
za njihove obitelji,
for children with physical limitations.
s tjelesnim poteškoćama.
from a hospital intensive care unit.
s bolničkog odjela intenzivne njege.
srcedrapajuće vijesti
ne bi želio čuti.
that Lars had a brain anomaly
da Lars ima anomaliju mozga
u gutanju,
he had for survival,
male šanse za preživljavanje,
to focus on the quality of time
fokusirati se na kvalitetu vremena
one of our family apartments
od naših obiteljskih apartmana
svakako,
with our aquatic therapist
s našim terapeutom
je doživljavao
since Lars was with us,
je Lars bio s nama,
svjedočanstvo
children's hospice care can create.
hospicij za djecu može imati.
was well managed,
bebe dobro je zbrinuta,
to be together in a beautiful place.
zajedno na predivnom mjestu.
who have our own children,
imamo svoju djecu,
the injustice of losing them.
nepravdom njihova gubitka.
dovoljno hrabri
vrstu mudrosti.
to come for care
koja su došla
that she might live another two weeks.
ima još možda dva tjedna života.
tumor na mozgu,
dosta ubrzalo
ružičasto i lila,
accessories that she loved,
ukrasima koje je voljela,
of every staff member.
cijelog osoblja.
stanje stabiliziralo,
the "George Mark bump,"
"George Mark čudo",
the prognoses of their illnesses
prognoze bolesti
je bila okružena,
often to accommodate her requests,
bili spremani prema njenim željama,
spent lots of cozy time with Crystal.
su puno zabavnog vremena s Crystal.
for about a week,
nama tjedan dana,
rublja besplatne."
soon arrived from out of town,
došla iz drugog grada,
four months of Crystal's life
četiri mjeseca Crystalina života
was outside in her wheelchair
bila vani u svojim kolicima
of the year earlier in a hospital bed,
mjesece u bolničkom krevetu,
druženje s bakom,
because of the activities
zbog aktivnosti
created for her.
pripremio za nju.
for everybody in the house.
nakit za sve u kući.
to help decorate for Halloween.
ukrasima za Noć vještica.
planning her tenth birthday,
planirajući svoj deseti rođendan,
thought she would ever see.
mislio da će doživjeti.
šalove za tu prigodu,
došla sam na posao
in crime, Charlie, greeted me.
Charlie, pozdravili su me.
a lemonade and cookie stand
štand za limunadu i kekse
of the cookie that I had selected,
keksa koji sam odabrala,
for one cookie.
skupo za jedan keks.
forever impacted mine.
život zauvijek utjecao na moj.
is shortened by a horrific illness
skraćen užasnom bolešću
that Crystal received
njegu koju je Crystal primala
respite and hospice care
hospicijska njega
from our healthcare landscape.
nedostaje u našem zdravstvu.
ovu njegu
of a hospital intensive care unit,
intenzivne bolničke njege,
that we're doing.
rad koji radimo.
pediatric hospices in the United States,
hospicija u SAD-u,
that based on our model,
da bazirano na našem modelu,
under various stages of development.
fazama nastajanja.
who die in the United States every year
umre u SAD-u svake godine
under those harsh, institutional lights
jarkim institucijskim svjetlima
the population of the United States,
petinom populacije SAD-a,
of the state of California,
od Californie,
centara za njegu.
obviously many times.
očito mnogo puta.
with our positive can-do attitude
s našim pozitivnim možemo-mi-to stavom
that our medical care system will fix it,
naše zdravstvo riješiti to,
for which there is no cure.
bolesti kojoj nema lijeka.
to keep children alive
održimo djecu na životu
that we might give them
bismo im mogli dati
for many hospital physicians
mnoge bolničke liječnike
about saving lives,
spašavati živote,
to the end of life.
kraju njihova života.
for whom we cared at the end of her life
smo brinuli do kraja života
tu dihotomiju
to help you bring an infant into the world
će pomoći donijeti novorođenče na svijet
ispratiti dijete s njega.
at George Mark?
u George Marku?
that bring our young patients to us
koje dovedu mlade pacijente k nama
have often been restricted,
životi ograničeni,
for long periods of time,
duge vremenske periode,
of chemotherapy or rehab.
kemoterapije i rehabilitacije.
of ignoring those limitations.
ignoriranje tih ograničenja.
for another baseball season
sezonu bejzbola
put on by the staff and kids
koje priređuju zaposlenici i djeca
playing a piano piece with his feet,
koji svira klavir svojim stopalima,
a boutonniere on his son's tuxedo lapel.
na rever sinovog smokinga.
the staff or the kids.
zaposlenici ili djeca.
delightful teenaged girls,
divnih tinejdžerki,
of my whole life."
noć mog života."
to be 85 years or just eight.
that death doesn't exist
smrt ne postoji
će itko od nas živjeti.
ne zaslužuju
most uncompromising bravery
beskompromisne hrabrosti
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