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Case 1

D is a 14-year-old boy who has Hunter syndrome, a serious genetic disorder for
which there is no known cure. His life expectancy is less than two years.
D adalah seorang anak laki-laki yang memiliki Hunter syndrome, yang
merupakan kelainan genetik serius yang tidak ada obatnya. erkiraan sisa
hidupnya kurang dari ! tahun.
D was admitted to the "ni#ersity $edical Center because he was expe- riencing
difficulty breathing. %ithin a day of admission, he was placed on a #entilator to
enable him to breath. &t the onset of aspiration, a tracheotomy procedure was
performed, and a feeding tube '() tube* was inserted into his stomach.
D dirawat di usat endidikan $edis karena ia mengalami kesulitan bernapas.
ada hari pertama perawatan, D dipasang #entilator agar ia dapat bernapas.
ada saat onset aspirasi, prosedur trakeostomi dilakukan, dan
D+s condition is considered stable. He is alert, tracks people with his eyes,
recogni,es his mother, and seems to en-oy watching cartoons and #ideotapes. D
is generally not in pain, though he makes it known he does not like to be
suctioned. He experiences pain when he is mo#ed because he is edematous. His
connecti#e tissue is filled with water, causing him pain and tightness. He is not on
any pain medication due to the fleeting nature of the pain, which he experiences
when he is mo#ed, washed, or suctioned.
.ondisi D diperkirakan stabil. .esadarannya baik, dapat kontak mata dengan
orang-orang, dapat mengenali ibunya, dan terlihat menikmati saat menonton
kartun dan #ideo. /ecara umum D tidak merasakan nyeri, walaupun dia
mengetahui bahwa dia tidak suka di-suction. D merasakan nyeri pada saat
bergerak karena badanya bengkak. 0aringan ikatnya terisi oleh cairan yang
menyebabkan D merasa nyeri dan sesak. D tidak diberikan anti nyeri karena
nyeri yang dirasakannya merupakan hal yang wa-ar, yang ter-adi saat dia
bergerak, mandi, atau ketika di-suction.
D+s parents decided to remo#e D from the respirator. D+s mother and father both
testified they understood that remo#ing the #entilator would hasten D+s death, but
felt remo#al was in his best interest and would put an end to his suffering. D+s
mother #isits D e#ery day in the hospital and was his primary caregi#er until he
was admitted. 1here is no 2uestion D+s parents want what is best for him.
3rang tua D memutuskan untuk melepaskan #entilator. .edua orang tua D
mengerti bahwa dengan melepaskan #entilator dapat memperpendek masa
hidup D, tetapi orang tua D merasa hal ini lah yang diinginkan oleh D dan
menghentikan penderitaannya. 4bu D selalu merawat D baik saat di rumah
sampai saat ini D dirawat di rumah sakit.
%hen D+s parents re2uested that D be remo#ed from the respirator and that
other medical care be terminated, Dr. C and 5urse H were not in agreement with
the parents+ decision. 1herefore, Dr. C brought the case before the hospital
medical ethics committee for re#iew.
.etika orang tua D meminta untuk melepaskan #entilator dan memberhentikan
semua bantuan medis, dokter C dan perawat H tidak setu-u dengan keputusan
orang tua D. $aka dari itu, dokter C membawa kasus tersebut ke komite etik
medis untuk ditin-au kembali.
/hould the medical ethics committee decide to discontinue life support 6
&pakah seharusnya komite etik medis 7/ tersebut memberhentikan bantuan
hidup pasien6
Case !
8aby 0 was born #ery prematurely on !9 $ay 1::; after !< weeks of gestation.
He weighed only 1.1 kg at birth. During his short life, he has suffered almost
e#ery concei#able misfortune. He was not breathing at birth and almost
immediately was placed on a #entilator. He was administered intra#enous
antibiotics to counteract infection. His pulse rate fre2uently dropped #ery low, and
for the first ten days of his life, his sur#i#al was touch and go. 8y /eptember
1::;, when 0 was only three months old, he had already been #entilated on two
occasions for a total of six weeks.
0+s current status is that he is se#erely brain damaged due to oxygen de-
pri#ation and impaired blood supply around the time of his birth. 1his damage is
permanent, and the brain tissue lost is irreplaceable. 4t is de- batable whether he
will e#er be able to sit up or hold his head upright. 0 appears to be blind, although
he may possibly regain some degree of sight. He is likely to be deaf as well. He
may be able to make sounds that reflect his mood, but he is unlikely e#er to be
able to speak. 4t is highly unlikely that he will de#elop e#en limited intellectual
abilities. $ost unfortunate of all, he is likely to be able to feel the same extent of
pain felt by a normal baby because pain is a #ery basic response. He may
achie#e the ability to smile and cry. =inally, as one might expect, his life
expectancy has been considerably shortened> at most he will li#e into his late
teens, but will probably die long before then.
0 is not terminally ill, and he is not at the point of death or of dying.
/hould the medical ethics committee decide to continue life support 6