[lbo-talk] Shiavo "Forbidden video"

Marta Russell ap888 at lafn.org
Fri Apr 8 15:42:21 PDT 2005



>
>No, the joke is that you're willing to squander your credibility about
>disability like this. No doctor in the world is going to order a feeding
>tube be put into somebody who can eat on their own in a case like this.
>That would bring on a massive malpractice judgment.

It slays me how you can make such a statement not having studied the issue. It happened in the Christine Busalacchi case where her father had the feeding tube inserted when the nurses had been feeding her with a spoon.

excerpt from Beyond Ramps: <> pp35-37 Dr. Carol Gill, psychologist and President of the Chicago Institute of Disability Research, documented in Mainstream Magazine the death of one young woman, Christine Busalacchi whose father simply wanted his daughter to die after she became brain injured in a car accident.18

Pete Busalacchi claimed, "My daughter is damn full gone" but according to Dr. Gill's research, hospital workers said Christine interacted with them, said "hi", giggled when they joked with her, made funny faces, watched soaps on TV, used simple communication switches to request food, and even mouthed the words to "Rudolf the Red-nosed Reindeer" at Christmas. Staff felt that with proper rehabilitation, Christine could regain more function. However, Christine's father could not accept his cognitively disabled daughter and wanted to move her to a place where her food and water could be taken away.

Dr. Gill explains the grief dynamics involved:

When a child is born imperfect or when a family member acquires a significant disability, the family experiences a profound sense of loss. Shock, denial, anger, despair and all the other concomitants of mourning may occur. With proper emotional support, medical guidance, information, and the passage of time, most families seem to weather the loss. They deal with the fact that the disability won't go away. They learn to recognize the ways their loved one is still the same person she/he was before the disability while coming to terms with the ways she/he is different.

Occasionally, however, family members get stuck in grief, particularly some parents of children and adults who become disabled. Like Pete Busalacchi, they seem unable to let go of their picture of their loved ones as non-disabled so they can accept them following injury or illness. Initially, they hope and pray for recovery. But when all options for cure are exhausted and they are confronted with the irreversibility of a severe disability, they begin to accept the idea of death as a resolution. Death may seem more finite and manageable a loss than the never-ending pain of having a loved one altered by severe disability. . . . [The family member sees] the person as an imposter. They resent those who argue for the continued support of the imposter's life.

In such instances, says Dr. Gill, the family may project that the disabled person is the one suffering and use that to legitimize a decision to terminate his or her life. But Dr. Gill points out that it is often the family that is suffering and it is the family in this frame of mind who is making the life or death decisions for their disabled relative.

Since Christine was only 17, her father had the power to make her medical decisions. One choice he made was to have a feeding tube inserted into her abdomen although according to staff, Christine was taking food by mouth. The feeding tube is critical to Christine's outcome because it represented the legal "artificial nutrition" that would be used in court to uphold that Christine was on "extraordinary" life support. Since the 1986 Bouvia court decision gave the individual the right to determine one's medical care and remove feeding tubes, Christine's father, now the arbiter of her care, could have the "artificial" nutrition removed and allow her to die even though Christine could eat on her own.

Despite hospital staff's testimony to Christine's abilities and their insistence that rehabilitation would further improve her condition, despite the existence of a video which showed Christine to be interactive and communicative (which her father wanted suppressed, threatening legal action against persons who circulated the tape), the Missouri Attorney General granted the father's wish. The medical professionals then moved Christine to a facility where they withheld all food and water and starved her to death.

<> pp 37-38 Even in cases where the adult patient expresses a distinct desire to live, the institutional momentum seems to be towards death, not life. Take Marjorie Nighbert, a woman who had an advanced directive to stop treatment if she became incapacitated, had a stroke, and was hospitalized. Because Marjorie had written the advanced directive, her brother

demanded that the feeding tube which saved her life be withdrawn. But a fully conscious Marjorie changed her mind upon disablement and decided that she wanted to live afterall. She specifically begged the nurses for food. Smith wrote, "This was so upsetting to one nurse that she blew the whistle. Enter the court, where, after a hurried investigation, it was determined that Marjorie was not medically competent to retract her advanced directive (in other words, to ask for the "treatment" of food). Thus even though she had asked to be fed, the starvation was allowed to continue."

Dr. William J. Burke, Professor of Neurology at St. Louis University calls what is going on in our institutions "stealth euthanasia". He says "The deaths of these patients are a dire warning about the increasingly perilous state of our medical ethics."20

Disability activist Lucy Gwin warns that:

When they speak of the burden that life must be for people like us, let us beware.

When they talk about our right to death with dignity, what they're really after is

cutting us out of the herd.21

<>

Marta


>
>Meanwhile, you might try adopting a scientific attitude toward the facts in
>this case. To quote from the state appointed guardian-at-litem's report:
>
>"In the month during which the GAL conducted research, interviews and
>compiled information, he sought to visit with Theresa as often as possible,
>sometimes daily, and sometimes, more than once each day. During that time,
>the GAL was not able to independently determine that there were consistent,
>repetitive, intentional, reproducible interactive and aware activities. When
>Theresa's mother and father were asked to join the GAL, there was no success
>in eliciting specific responses. Hours of observed video tape recordings of
>Theresa offer little objective insight about her awareness and interactive
>behaviors. There are instances where she appears to respond specifically to
>her mother. But these are not repetitive or consistent. There were instances
>during the GAL's visits, when responses seemed possible, but they were not
>consistent in any way.
>
>"This having been said, Theresa has a distinct presence about her. Being
>with Theresa, holding her hand, looking into her eyes and watching how she
>is lovingly treated by Michael, her parents and family and the clinical
>staff at hospice is an emotional experience. It would be easy to detach from
>her if she were comatose, asleep with her eyes closed and made no noises.
>This is the confusing thing for the lay person about persistent vegetative
>states.
>
>"Theresa's neurological tests and CT scans indicate objective measures of
>the persistent vegetative state. These data indicate that Theresa's cerebral
>cortex is principally liquid, having shrunken due to the severe anoxic
>trauma experienced thirteen years ago. The initial oxygen deprivation caused
>damage that could not be repaired, and the brain tissue in that area
>continued to devolve. It is noteworthy to recall that from the time of her
>collapse, and for more than three years, Theresa did receive active
>physical, occupational, speech and even recreational therapy. There is
>evidence early in her records of care that she said "no" during physical
>therapy session. That behavior did not recur and was not further referenced.
>
>"In recent months, individuals have come forward indicating that there are
>therapies and treatments and interventions that can literally re-grow
>Theresa's functional, cerebral cortex brain tissue, restoring part or all of
>her functions. There is no scientifically valid, medically recognized
>evidence that this has been done or is possible, even in rats, according to
>the president of the American Society for Neuro-Transplantation. It is
>imaginable that some day such things may be possible; but holding out such
>promises to families of severely brain injured persons today may be a
>profound disservice.
>
>"In the observed circumstances, the behavior that Theresa manifests is
>attributable to brain stem and forebrain functions that are reflexive,
>rather than cognitive. And the substantive difference according to
>neurologists and neurosurgeons is that reflexive activities of this nature
>are neither conscious nor aware activities. And without cognition, there is
>no awareness.
>
>"The GAL concludes from the medical records and consultations with medical
>experts that the scope and weight of the medical information within the file
>concerning Theresa Schiavo consists of competent, well documented
>information that she is in a persistent vegetative state with no likelihood
>of improvement, and that the neurological and speech pathology evidence in
>the file support the contention that she cannot take oral nutrition or
>hydration and cannot consciously interact with her environment."
>
>___________________________________
>http://mailman.lbo-talk.org/mailman/listinfo/lbo-talk

-- Marta Russell Los Angeles, CA http://www.martarussell.com/



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