Artificial feeding-Terri Schiavo

begalli · Mar 28, 2005

Reading Triage_RN's scenario I think the best way to compose a living will or an advance directive is to NOT name specifics of what you want but make sure 200% that you name a proxy who you trust and who knows you well to make decisions for you along with your healthcare team in a particular situation at a particular time.

There are some things that I definitely know that I don't want. But in some circumstances things are not so concrete.

It all depends.

Tweety, BSN, RN · Mar 28, 2005

If a loved one puts a tube feeding in me thinking there may be some hope of later recovery, or just following the medical establishments recommendations, but later decides it's not getting me well and there's no chance of recovery, I would expect them to pull it. (But please God, don't wait 15 years!).

NYERNURSE · Mar 28, 2005

If a loved one puts a tube feeding in me thinking there may be some hope of later recovery, or just following the medical establishments recommendations, but later decides it's not getting me well and there's no chance of recovery, I would expect them to pull it. (But please God, don't wait 15 years!).

Exactly!

I really don't appreciate being descibed as "evil" and in need of prayers by the crowds gathered at Terri's hospice. In the past I have turned off tube feeds/IV fluids/IV meds/extubated pts when the time had come to cease all efforts. Most don't have living wills either. For the most part families agree as a unit to withdraw care when they understand the futility of their loved ones condition...thank goodness. Sometimes there are disagreements but are usually resolved in a short time.

Guess I'm on the highway to hell. :uhoh21:

LydiaNN · Mar 28, 2005

Published on Friday, March 25, 2005

FOCUS: Bigotry and the Murder of Terri Schiavo

By JOE FORD

The Harvard Crimson

"Misery can only be removed from the world by painless extermination of the

miserable."

--a Nazi writer quoted by Robert J. Lifton in The Nazi Doctors: Medical

Killing and the Psychology of Genocide

The case of Terri Schiavo has been framed by the media as the battle

between the "right to die" and pro-life groups, with the latter often

referred to as "right-wing Christians." Little attention has been paid to

the more than twenty major disability rights organizations firmly

supporting Schiavo's right to nutrition and hydration. Terri

Schindler-Schiavo, a severely disabled woman, is being starved and

dehydrated to death in the name of supposed "dignity." Polls show that most

Americans believe that her death is a private matter and that her removal

from a feeding tube--a low-tech, simple and inexpensive device used to feed

many sick and disabled people--is a reasonable solution to the conflict

between her husband and her parents over her right to life.

The reason for this public support of removal from ordinary sustenance, I

believe, is not that most people understand or care about Terri Schiavo.

Like many others with disabilities, I believe that the American public, to

one degree or another, holds that disabled people are better off dead. To

put it in a simpler way, many Americans are bigots. A close examination of

the facts of the Schiavo case reveals not a case of difficult decisions but

a basic test of this country's decency.

Our country has learned that we cannot judge people on the basis of

minority status, but for some reason we have not erased our prejudice

against disability. One insidious form of this bias is to distinguish

cognitively disabled persons from persons whose disabilities are "just"

physical. Cognitively disabled people are shown a manifest lack of respect

in daily life, as well. This has gotten so perturbing to me that when I

fly, I try to wear my Harvard t-shirt so I can "pass" as a person without

cognitive disability. (I have severe cerebral palsy, the result of being

deprived of oxygen at birth. While some people with cerebral palsy do have

cognitive disability, my articulation difference and atypical muscle tone

are automatically associated with cognitive disability in the minds of some

people.)

The result of this disrespect is the devaluation of lives of people like

Terri Schiavo. In the Schiavo case and others like it, non-disabled

decision makers assert that the disabled person should die because he or

she--ordinarily a person who had little or no experience with disability

before acquiring one--"would not want to live like this." In the Schiavo

case, the family is forced to argue that Terri should be kept alive because

she might "get better"--that is, might be able to regain or to communicate

her cognitive processes. The mere assertion that disability (particularly

cognitive disability, sometimes called "mental retardation") is present

seems to provide ample proof that death is desirable.

Essentially, then, we have arrived at the point where we starve people to

death because he or she cannot communicate their experiences to us. What is

this but sheer egotism? Regardless of one's religious beliefs, this is

obviously an attempt to play God.

Not Dead Yet, an organization of persons with disabilities who oppose

assisted suicide and euthanasia, maintains that the starvation and

dehydration of Terri Schiavo will put the lives of thousands of severely

disabled children and adults at risk. (The organization takes its name from

the scene in Monty Python and the Holy Grail in which a plague victim not

dying fast enough is hit over the head and carted away after repeatedly

insisting he is not dead yet.) Not Dead Yet exposes important biases in the

"right to die" movement, including the fact that as early as 1988, Jack

Kevorkian advertised his intention of performing medical experimentation

("hitherto conducted on rats") on living children with spina bifida, at the

same time harvesting their organs for reuse.

Besides being disabled, Schiavo and I have something important in common,

that is, someone attempted to terminate my life by removing my endotracheal

tube during resuscitation in my first hour of life. This was a

quality-of-life decision: I was simply taking too long to breathe on my

own, and the person who pulled the tube believed I would be severely

disabled if I lived, since lack of oxygen causes cerebral palsy. (I was

saved by my family doctor inserting another tube as quickly as possible.)

The point of this is not that I ended up at Harvard and Schiavo did not, as

some people would undoubtedly conclude. The point is that society already

believes to some degree that it is acceptable to murder disabled people.

As Schiavo starves to death, we are entering a world last encountered in

Nazi Europe. Prior to the genocide of Jews, Gypsies, and Poles, the Nazis

engaged in the mass murder of disabled children and adults, many of whom

were taken from their families under the guise of receiving treatment for

their disabling conditions. The Nazis believed that killing was the highest

form of treatment for disability.

As the opening quote suggests, Nazi doctors believed, or claimed to

believe, they were performing humanitarian acts. Doctors were trained to

believe that curing society required the elimination of individual

patients. This sick twisting of medical ethics led to a sense of

fulfillment of duty experienced by Nazi doctors, leading them to a

conviction that they were relieving suffering. Not Dead Yet has uncovered

the same perverse sense of duty in members of the Hemlock Society, now

called End-of-Life Choices. (In 1997, the executive director of the Hemlock

Society suggested that judicial review be used regularly "when it is

necessary to hasten the death of an individual whether it be a demented

parent, a suffering, severely disabled spouse or a child." This illustrates

that the "right to die" movement favors the imposition of death sentences

on disabled people by means of the judicial branch.)

For an overview of what "end-of-life choices" mean for Schiavo, I refer you

to the Exit Protocol prepared for her in 2003 by her health care providers

(available online at http://www.cst-phl.com/050113/sixth.html). In the

midst of her starvation, Terri will most likely be treated for "pain or

discomfort" and nausea which may arise as the result of the supposedly

humane process of bringing about her death. (Remember that Schiavo is not

terminally ill.) She may be given morphine for respiratory distress and may

experience seizures. This protocol confirms what we have learned from

famines and death camps: death by starvation is a horrible death.

This apparently is what it means to have "rights" as a disabled person in

America today.

Joe Ford '06 is a government concentrator in Currier House.

ktwlpn, LPN · Mar 28, 2005

The reason why many of us feel very strongly that this matter is a right to die case and NOT an issue of the rights of the disabled is the fact that Terri was not born with a disablilty and living her life as disabled but rather was a healthy person ,fully cognizant and capable of making her wishes known...and those wishes were found to be her desire to not live in "like that"...The disabled have made her case their cause celebre for their own gains.....Even Bob Schindler stated as much directly to the crowds last evening....THe disabled activists that have jumped on the bandwagon refuse to accept the fact that ANYONE would choose death over complete dependency-alert and aware or not.THey think their choice is the ONLY choice........But we do have that right.....I for one feel that I don't want to be a burden on my family or society and the health care system....If I can't sit up and eat a cheeseburger and wipe my own butt then I am outta here....I do NOT fear death-but I fear a life of dependency....Allowing anyone to choose the right to die is NOT removing the disabled persons right to life....I don't get why they are so threatened----ignorance of the true facts in this case?

allnurses Guide · Mar 28, 2005

The reason why many of us feel very strongly that this matter is a right to die case and NOT an issue of the rights of the disabled is the fact that Terri was not born with a disablilty and living her life as disabled but rather was a healthy person ,fully cognizant and capable of making her wishes known...and those wishes were found to be her desire to not live in "like that"...The disabled have made her case their cause celebre for their own gains.....Even Bob Schindler stated as much directly to the crowds last evening....THe disabled activists that have jumped on the bandwagon refuse to accept the fact that ANYONE would choose death over complete dependency-alert and aware or not.THey think their choice is the ONLY choice........But we do have that right.....I for one feel that I don't want to be a burden on my family or society and the health care system....If I can't sit up and eat a cheeseburger and wipe my own butt then I am outta here....I do NOT fear death-but I fear a life of dependency....Allowing anyone to choose the right to die is NOT removing the disabled persons right to life....I don't get why they are so threatened----ignorance of the true facts in this case?

So, if you are born normal but subsequently got polio or some degenerative nerve disease or were tossed from a horse onto your neck, you don't have a right to say anything? You don't have a right to legal protection? That is a different and lesser kind of disability? Only those "born that way" get a voice? Or are valuable? Or are worth loving?

You can't eat a hamburger or wipe your own butt and that means a lesser quality of life and you should die? Come on, I know many very accomplished folks who can't wipe their butts. (My three year old for instance :roll

I have a niece who was born with spina bifida - she has to cath herself to pee and has had numerous ortho surgeries and other surguries to replace her shunt . .. I'd knock Dr. Kervorkian on his mean old kester before I'd let him near her.

I can certainly see the disabled folks point . . .it looks like no one values them as human beings. That has gotta be scary.

steph

allnurses Guide · Mar 28, 2005

Mercy - that is a very good article which certainly deserves a hearing (or reading) . .. disabled people have a right to protest what they themselves see as further eroding of their right to life, liberty and the pursuit of happiness .. .something we as citizens are all supposed to be assured of.

Protesting, seeking legal answers, etc., certainly isn't a circus to me. It is everyone's right.

steph

Tweety, BSN, RN · Mar 28, 2005

Meryteapot, I adore you and your posts. But with a title like "Bigotry and the Murder of Terri Schiavo", my mind shut and I refuse to read it.

This kind of rhetoric only furthers the divide.

UnewmeB4 · Mar 28, 2005

Mercy - that is a very good article which certainly deserves a hearing (or reading) . .. disabled people have a right to protest what they themselves see as further eroding of their right to life, liberty and the pursuit of happiness .. .something we as citizens are all supposed to be assured of.
Protesting, seeking legal answers, etc., certainly isn't a circus to me. It is everyone's right.
steph

My problem with the protestors, is that the place she is at, is a hospice, where there are other patients there...in the process of dying. What about their rights to a peaceful death? I just try to imagine what it must be like for those families who have loved ones in the facility. I think we have forgotten about them. We have mentioned the healthcare providers and their stress. Imagine being a patient there.

James Huffman · Mar 28, 2005

Meryteapot, I adore you and your posts. But with a title like "Bigotry and the Murder of Terri Schiavo", my mind shut and I refuse to read it.
This kind of rhetoric only furthers the divide.

Your call, of course.

But that wasn't her "rhetoric": it was the headline in The Harvard Crimson.

The bigger question, perhaps, is whether we are gaining any ground in such a crucial debate by mincing words. If -- as Mr. Ford suggests -- the problem is an inherent "prejudice against disability," then what do we gain by refusing to call prejudice what it is: bigotry? And if Ms. Schiavo is being murdered, what do we gain by calling it something else?

Jim Huffman, RN

SmilingBluEyes · Mar 28, 2005

I don't believe it's murder. And I am no bigot. I do agree the title is inflammatory ----but I will read it again---- to try and understand how the "other side" thinks. Even if I disagree. Even if I do find it distasteful and provocative. Because, I want to understand both sides of the issue. Because I am still not fully decided.....................(strange eh)

......................just yet.

I guess the politics are getting in the way of my knowing the REAL story.

LydiaNN · Mar 28, 2005

Meryteapot, I adore you and your posts. But with a title like "Bigotry and the Murder of Terri Schiavo", my mind shut and I refuse to read it.
This kind of rhetoric only furthers the divide.

First of all, I am apologizing to all of you, because I was in something of a hurry when I posted the article and didn't add my own input. That's something I typically do and absolutely should have done in this case. I find this article very interesting precisely because it offers a perspective that I hadn't even considered, although that perspective is far more radical than my own. I have a son with a disability and used to consider myself quite enlightened in matters of advocacy, until I went to a conference last month and a panel presentation of self advocates really challenged my self assessment. And James, I'm sorry you won't read the post, because the viewpoint it offers is compelling, even if the title is inflammatory.