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Personal Stories
Most New Yorkers are unaware of the law regarding medical decision making
for incapacitated patients. This page will tell some of the true stories
of patients and families that illustrate the problems.
Raymond
Raymond's story is told on the
Ray of Hope website, and in an article in the Buffalo
News, Sunday June 11, 2006, and an article in The
Tonawanda News, November 16, 2007.
The Health Care
Decisions Act for Persons with Mental Retardation (HCDA), enacted in
2002 permits family decisions for those retarded persons who have a
(Surrogate's Court Procedure 17-A) legal guardian. Legal guardianship is
expensive and time-consuming. Often it can not be obtained in time to help
many patients with developmental delays, as Raymond's story demonstrates.
The HCDA was a welcome first
step toward reducing suffering of people with mental retardation.
Aside from the expense and long delay in obtaining 17-A guardianship, keep
in mind that this law applies only to mentally retarded
persons. Legal guardians of other incapacitated people (such as those with
Alzheimer's dementia or strokes) do not have the same
authority since that guardianship is granted under a different section of
New York law (Mental Hygiene laws).
Sheila Pouliot
Sheila Pouliot was a 42 year old Syracuse woman who was severely
disabled since infancy. Her death in March 2000 followed an agonizing
fight by her family and physician to withdraw the burdensome treatments
imposed by New York state law. Read
about her story here including news articles, her physician's account
and a discussion of artificial hydration and nutrition.
Paula Baez
Paula Baez was a 49
year old Buffalo woman with Down's Syndrome. Speaking only Spanish,
she was cared for at home by her loving family, but died in a hospital
ICU surrounded by strangers she couldn't understand, on a ventilator her
family had opposed. Read
about her story here as told by her niece, and a brief account by her
physician.
Tony's Mother
Tony is a biology
teacher whose mother was diagnosed with Alzheimer's at the age of 94. He
and his wife took care of her in her own home as long as they could and
then put her in a nursing home. His mother stopped eating and the nursing
home physician told Tony they would have to put a feeding tube in her. On
the advice of the geriatric specialist who had diagnosed his mother, Tony
refused to allow the feeding tube.
Read
about Tony and his mother here and a brief commentary.
For more Information, E-mail Family Decision Coalition
For questions about website, E-mail Jack Freer
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