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.
Tony's Mother
Tony has asked that his last name be kept private
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. He was
intimidated and threatened by the nursing home. He finally hired a
private nurse to feed his mother and she gained weight. The following
letter, written in 1999, describes the treatment Tony's mother and other
patients received in the nursing home. The letter was written for a NY
newspaper but not published.
"My mother, 94 years of age, had to be placed in a nursing home in Queens,
NY. She had Alzheimer's disease and was also physically disabled. Every
conceivable attempt was made to keep her at home but she was beyond home
care. She eventually died in the nursing home.
"The nursing home administration made every attempt to surgically implant
a
feeding tube into my mother's stomach. They even went so far as to
intimidate us by threatening to force us out of the facility unless we
agreed to implant the surgical feeding tube. Two private physicians were
familiar with my mother's condition. One was dead set against this
procedure and the other felt it really wouldn't make a difference one way
or the other. We absolutely refused to sign for a feeding tube. I hired
a private nurse to feed her and she recuperated just fine. In fact, she
regained the weight she had lost. The nursing home did not supply an aide
to feed her as this was obviously too costly. I can only imagine how many
helpless residents are getting unnecessary feeding tubes.
"My understanding is that when a feeding tube is used, the nursing home is
reimbursed at a higher rate. The rationale for the higher rate is that
the resident requires more time and attention from the aides and nurses.
In fact, the opposite is true. Less time is required as the feeding tube
patient is fed like a flower is fed water. The facility gains in two
ways. It receives more money and uses less aide time than if the patient
was fed by mouth.
"Since I spent so much time at the facility, caring for mom, I saw things
others did not. Patients were neglected. Some had to yell for someone to
help them. My mother's roommate was very happy to see me as she had no
family to help her and I always did what I could for her. I saw too many
patients fall and really injure themselves because the help was not
available. I witnessed my mother get the wrong medication as there was
too much nurse turnover - especially in the evening and on weekends. I
also saw safety hazards.
"It was an overwhelming time for me and my wife. We cannot forget. Prior
to mom's nursing home admission, I had read articles in Consumer Reports
describing the nursing home conditions in our country. It also mentioned
that they have a very powerful political lobby. If we as a society ignore
and do not speak out on the situation, we will all, directly or indirectly
be affected."
Commentary
The story Tony tells is all too common in nursing homes. Many nursing home
residents are declared to be candidates for feeding tubes because of poor
oral intake. As Tony discovered, this is often because of the labor and
time intensive nature of spoon feeding. Many impaired elderly patients do
just fine with assistance with meals, but wind up with feeding tubes
because of their ease of maintnance.
Other patients get feeding tubes because their total intake drops below
some level set by the Department of Health (DOH). Nursing homes are
acutely aware of the regulatory power of the NYS DOH which scrutinizes
medical records in detail (especially weight records and calorie counts).
Nursing home administrators know the DOH can make life miserable for them
and even shut them down.
Other patients have feeding tubes placed because of aspiration pneumonia.
Despite the absence of evidence that tube feedings
prevent aspiration pneunonia, this is the usual nursing home response.
Ironically, the argument often made against decisions to forgo
feeding
tubes is that such refusal would cause "starvation." If
starvation is
the act of preventing someone from eating, this is exactly what tube
feedings result in, since they permit the nursing home to completely
stop giving the
patient oral feeds (deemed to be "unsafe"). Sometimes this
decision to
withhold
food by mouth occurs simply in response to a swallowing study ("modified
barium
swallow") even in the absence of clinically apparent aspiration.
Often this debate about feeding tubes and surrogate decision making for
incapacitated patients is characterized as a "right to die" debate. The
truth is: it is simply bad medicine to require a feeding tube in
many of these cases.
They don't accomplish what people assume they will, and they cause
suffering for patient and family alike. The simple fact is that many 94
year old
patients die no matter what we do, and their failure to eat hearty is the
result of their dying, not the cause.
Jack P. Freer, MD, FACP
Associate Professor of Clinical Medicine
Division of Geriatrics/Gerontology
University at Buffalo
