Any Thoughts?

[Progo35]

Hello,

Very little press coverage has been given to what are callled "Futile Care" laws. These laws allow physicians to deny life sustaining treatment to a patient or his family even if this person or their family wants it. For information about Futile Care cases, please see these links

Andrea Clark:
http://www.democraticunderground.com...ss=364x1128570


Emilio Gonzales:
http://www.statesman.com/news/content/news/stories/local/05/09/9emilio.html?COXnetJSessionIDbuild29=lCxGGQrLL515v p6hdmXVX2NQSKsd5pvqGScQTMmCXFHbP38G1s7h!-421653901&UrAuth=`N\NUOcN\UbTTUWUXUVUZTZUcUWU\U`UZ UaU]UcTYWYWZV&urcm=y

As an American citizen, I am extremely disturbed that such laws have been passed, particularly the Texas law, which seems to have affected the highest volume of unwilling people. To determine who's life is worthwhile and who's isn't is un-democratic, un-American, and reflects a National Socialist outlook on human life. Such laws also violate both the principles included in the Bill of Rights and Declaration of independence, and the Americans wtih Disabilities Act.

Given the situation, I would like to organize a group that would fight against such laws and for the rights of disabled people using a Christian ethical basis but framing itself in a manner that would focus on our legacy as Americans and on laws that protect the vulnerable, so that people of all faiths and persuasions could participate without feeling like they were attaching themselves to a larger ideology.

I was wondering if any of the activists/people on this site have any suggestions about organizing such a group and/or ways that people could make others more aware of what is going on? I'd also be interested in knowing if anyone on this site would be interested in supporting/joining such an organization if it were formed. One thing that I would really like to do is try to get other civil rights groups to support this as a civil rights issue, as I feel that it must be identified as such for such practices to cease.

Thanks,
Progo35

[dewdrop_world]

Just a caution for others... the democratic underground website crashed Firefox on my mac (Firefox became unresponsive and cpu use went up to 100%).

James

[scott snedeker]

As a physician I become alarmed when medical decisions are legislated. Each medical of my decisions is made on a case by case basis.

There are times when I deny a request for a treatment by a patient or family.

For example, I have denied prescriptions for narcotics in patients who I believe are abusing them; or referral for a surgery that is not indicated.

The case where a patient is thought to be terminal such as liver failure in an alcoholic but does not qualify for a transplant is one of the most difficult. Livers are scarce with dozens of patients hope they survive long enough to recieve each one. Because of the limited supply, the livers become more important than the patient by necessity. A patient must demonstrate survivability and unusual reliability with medical compliance to qualify.

Heavy stuff! This could really be hosed up if lawyers and politicians diddle around with these decisions.

[Progo35]

Yes, but none of these decisions have related to what you are talking about, namely, organ transplant. These were all cases where a patient was disabled by their mental condition or terminally ill and wanted basic treatment to continue living. Moreover, many times such deaths have resulted from feeding tubes being removed. I don't know where the medical community got the idea that starvation and dehydration are painless ways to die, but that's what they did in Nazi Germany.

If your patient was waiting for a liver transplant, you would presumably not deny that patient medication to treat the condition and thus condemn them to death. Moreover, I would argue that the sickest get first pick at the livers, the healthy have a better chance of surviving until another one becomes available.

Fundamentally the issue is that such decisions should be made by families. It is important to read the articles I posted in order to get an understanding of what I'm talking about: this goes way beyond discernment regarding who is the best canidate for a transplant and extends itself to the cognitively disabled.

I also feel like the medical community has fallen into the practice of dehydrating patients in the name of "compassion" while their very arguments contradict the suffering argument. If a person is unconscious enough to not notice when food and water or withdrawn, than he or she is unconscious enough not to recognize that they are in a hospital or that a feeding tube has been inserted in the first place. THus, the only people who suffer as a result of removing nutrition are the patient's families. Finally, being cognitively disabled is NOT a fate worse than death. I worked with severely developmentally disabled people during my senior year in high school, and all of them would be canidates for the withdrawal of food and water. These people had the intellects of small infants or children. If we are going to assert that their lives are untenable, then we would have to assume that infants lead an untenable life. Moreover, the fact that this is connected to Medicaid is very telling: as loudly as doctors deny it, this comes down to declaring a patient's live "not worthy of living" so that the stronger can survive, an extremely unbiblical position.

[Progo35]

sorry about that, perhaps you could look up Andrea's case online?

[Progo35]

Scott-just to clarify: I'm mentioning an opposite argument and mentioning Nazism completely as information tools. I'm not saying or thinking that you endorse such practices, I just want people to be aware of the historical ramifications of this situation. I thought that your comments were very productive and thoughtful.

[scott snedeker]

progo

Some well put arguments. These are difficult decisions whether to stop feeding or hydration. Each decision is also made on a case by case basis. It comes when I or a family member of a patient must decide the course of care. Like it or not, I or the family members must "play God."
Believe me, this is the least favorite part of my job.

Perpetuating a vegetative state commonly leads to multiple complications sich as bed sores, urinary tract infections, pneumonia resulting in painful and uncomfortable procedures, fevers and a long list of unpleasantness.

Death by dehydration is not painful and only a little uncomfortable relative to the levels of suffering commonly seen by me in my patients illnesses.

We also tread precipitously close to euthanasia, for instance, when we give small continuous drips of intravenous morphine in a patient dying from pulmonary failure. This relieves the gasping air hunger sensation but because the patient no longer struggles, arrest happens sooner.

But each of these are moment to moment decisions that are dynamic and can't wait on a congressional committee who have never once managed a vegetative or dying patient.

Seeing the human side of these real life experiences is necessary before developing a firm opinion as to what is best.

[Progo35]

I guess in response I have to say that I do not believe that you should have any right as a doctor to discontinue treatment without the patient or his family's consent. That should be a family decision, and I do not think that anyone is entitled to play God, if that is what you mean. In my opinion, doctors should focus on alleviating the pain caused by bed sores and urinary tract infections rather than kiiling patients to relieve the pain. If I had a urinary tract infection or a bed sore, I would hope that my doctor would not dehydrate me to "relieve my pain." Given this fact, I would also hope that doctors would not dehydrate someone in a coma simply because they are in a coma.

As a doctor, perhaps you could ellaborate on why dehydration is not painful? Frankly, I agree with what you say about morphine but would much rather die from a morphine overdose vs. being starved to death. But, that is what makes both practices wrong.There is another link that I really want to post about an experience of someone who was thought to be in a PVS state, but I'll need to get to that later. The bottom line is, no matter how well intentioned you are, you do not have to nor are you entitled to play God when deciding when someone dies. I just think that we too often relegate disabled people's lives to the status of "interesting ethical discussion" rather than recognizing a fundamental right to live. I hope that this response doesn't seem like an attempt to belittle you personally: but I do strongly believe that more doctors need to reconsider how they regard human life. We should not be forcing the most vulnerable in our soceity to "get out of the way" so that stronger people can have the resources they might have used. I believe that such behavior is the same as a hate crime committed against a homosexual or another person, only it is ignored by the ACLU and other civil rights groups that should be stepping up to the plate in this respect.

All that being said, despite what others may think, does anyone have any suggestions on how concerned people could better bring such issues to our nation's attention? That is something I am really interested in.

[scott snedeker]

All of these difficult decisions are carefully made with consent of the patient or by the family. Your response resembles a common misconception by people reading this from outside the experience itself.

If you are really interested you might consider getting a nursing degree and work in a hospital. Within most hospitals are ethics committees that help with making tough decisions. Participation in an ethics committe by multiple clinical and nonclinical persons help with broadening the outlook.

There is no pain with dehydration only a dry mouth. survival is usually less than 6 days. There is not sufficient time to die of starvation.

These are imperfect solutions in tough circumstances, as would be artificially feeding a vegetative person. I for one who have seen this particular miraculous horror of medical science as one that I will avoid as my own fate. I will take my own life or make provisions to prohibit artificial hydration if my turn comes.

Others feel differently, as you do. That any existence is preferable over death. As I get older I care less about quantity of life and more about quality.

You are young and your will to survive strong. Longevity is in my family. My grandfather is 94 and still living on his own. I personally do not want to live another 52 years. Another 35 will be enough then I am through!

However I agree with your objection to a physician to over rule a family decision to perpetuate a vegetative state with artificial nutrition and hydration. This is a violation of automony! There is no way in hell that I would desire that kind of power or responsibility.

Currently I have the authority and duty (yuck!) to involuntarily commit some one involuntarily for 72 hour psychiatric evaluation based on criteria of a patient imminently threatening to harm themselves or others. I Have had to use this authority less than a dozen times in my career. Each time it scares the hell out of me! As it should. Because it does legally over rule another person's autonomy.

Each of the times I Used It, the patient was acutely psychotic (hallucinating or paranoid delusion to the point of violence) or was attempting suicide. If this amount of authority makes me the most uncomfortable I ever get (and it's just placing the patient in a place of safety) then deciding that some one should die when family feel otherwise would be absolutely intolerable to me.

[Progo35]

Hi, Scotty,

I think that we agree, fundamentally, on what I am concerned about. I am not saying that people do not have the right to refuse treatment if they do not want it (within certain boundaries) but, as you say, overriding patient decisions violates autonomy. That also creates a society where an elite group of thinkers makes decisions for the rest of us, particularly those who may have to be on medicaid.

I would see the decision to committ someone to a mental hospital as different then withdrawing care. If someone is threatening to harm himself, I feel it is our moral responsibility to express concern for that person by taking measures to prevent depression from overriding his or her natrual survival insticts. Not to do so would constitute a crass disregard for their lives.

I also am quite concerned about how far this has gone in some cases, which I will discuss later.

[scott snedeker]

A place where you could gain perspective would to be have try at being a hospice volunteer and a volunteer at a nursing care facility. This would immerse you in the environments that reflect both sides of the decision. From this experience you can draw a solid feeling of this concern you have.

I teach students in my practice. The best tools are case studies of an individual example of an Illness and its management.

[Progo35]

http://books.google.com/books?id=OZO...ct=result&cd=1

Here is a link to Peter Singer's Practical Ethics, Second Edition, which gives arguments that are comparable to the Nazis perspectives in WWII.

While I realize that the Nazis were trying to create a "Master Race," I think that we are just moving in that direction again, minus the "Race" factor. We now what a racially diverse "Master Society." Just a thought-as Singer and his supporters aren't racists in the classic sense, nor are the majority of those advocating involuntary/nonvoluntary euthanasia of disabled people. His argument about Hemopheliac infants is case in point regarding how far he extends his ideas.

[Progo35]

Unfortunately, the website above doesn't cover the issue that I am concerned about, which is chapter six, provided below. Altough, the other link gives important general info about his other beliefs in assessing ch. 6 in context.

http://www.utilitarian.net/singer/by/1993----.htm

[Progo35]

Has anyone had the opportunity to read the link above? If so, I'd love to have some reflections on Singer's work.

[Progo35]

Another thought in terms of gaining perspectives through observing hospice care is that I did participate in a program for severely disabled adults and children during my senior year of high school. These people were seriously impaired-they had feeding tubes, they had to be changed, they couldn't talk, etc.

Through this experience, I was deeply affected by the fact that these people were only understood by God, and I felt that they were hear to show people how precious human diversity is, and to represent an innocence that we can never hope to attain.

Moreover, it teaches one about compassion. For instance, one time I took a young man to the group to an art class so that he could watch. I got some clay and left it in front of him, because I didn't think he had the capacity to pick it up. When I turned around from my other task, I saw that he was putting the clay into his mouth. "Oh, don't eat the clay!" I said, gently taking it out of his hands and adding water. The thing is, babies put things in their mouths all the time to explore them, so this young man was just doing what he was developmentally up to doing. He wasn't suffering from this experience, I was the only one who was "negatively" impacted by his almost eating clay, and it was no big deal.

Another young girl was not on a feeding tube but was severely autistic. She, however, expressed definite reactions to various people and stimuli. For instance, when her mom came to pick her up at the end of the day, she would bounce up an down and make loud, excited noises in a way that she had not done all day. She was very happy to see her mom!

So, this is one of the experiences that teaches me that it is a horrendous, cruel sin to remove food and hydration from innocent people-whose lives are not like ours but are only "terrible" when we see it that way and shirk from the responsiibility they pose. But, that is what some contemporary doctors would like to do-in the name of responsibility!

[BrentRichards]

I did read some of the Singer stuff, and it scared the bejabbers out of me. Yikes.

A friend of mine has a daughter, aged 23, who has never walked, spoken, signed, or in any way indicated understanding or meaninful awareness of relating to people around her. At about age 8, she lost the ability to swallow, and is now fed automatically through a permanent feeding tube implanted in her side. She is strapped into her wheelchair, and has no voluntary control over any of her movements. My friend says that by most people's definitions, she can do nothing, but he doesn't buy that: She can allow us to love and serve her, and that's good enough for him. They're a pretty inspiring family.

[Progo35]

Thanks for sharing, Brent. I totally agree.

[scott snedeker]

Originally Posted by Progo35

Another thought in terms of gaining perspectives through observing hospice care is that I did participate in a program for severely disabled adults and children during my senior year of high school. These people were seriously impaired-they had feeding tubes, they had to be changed, they couldn't talk, etc.

Through this experience, I was deeply affected by the fact that these people were only understood by God, and I felt that they were hear to show people how precious human diversity is, and to represent an innocence that we can never hope to attain.

Moreover, it teaches one about compassion. For instance, one time I took a young man to the group to an art class so that he could watch. I got some clay and left it in front of him, because I didn't think he had the capacity to pick it up. When I turned around from my other task, I saw that he was putting the clay into his mouth. "Oh, don't eat the clay!" I said, gently taking it out of his hands and adding water. The thing is, babies put things in their mouths all the time to explore them, so this young man was just doing what he was developmentally up to doing. He wasn't suffering from this experience, I was the only one who was "negatively" impacted by his almost eating clay, and it was no big deal.

Another young girl was not on a feeding tube but was severely autistic. She, however, expressed definite reactions to various people and stimuli. For instance, when her mom came to pick her up at the end of the day, she would bounce up an down and make loud, excited noises in a way that she had not done all day. She was very happy to see her mom!

So, this is one of the experiences that teaches me that it is a horrendous, cruel sin to remove food and hydration from innocent people-whose lives are not like ours but are only "terrible" when we see it that way and shirk from the responsiibility they pose. But, that is what some contemporary doctors would like to do-in the name of responsibility!

I see now your reason for your alarm. The situations you describe are of young people who indeed live different lives the the rest of us. I agree with your position because these individuals arre expected to maintain or even marginally improved their quality of being.

Being an Internal medicine specialist, most of my patients are elderly. The decisions of withdrawing life support are made in situations where a condition is terminal, progressive and incurable where the quality of life is expected to deteriorate from miserable to more miserable.

Withdrawing support from an autistic child or young adult is eugenics.

Withdrawing from a patient slowly dying of an incurable illness is respecting their wishes if they have a living will. Sometimes when no living will is available the the family and physician must guess whether the patient would have chosen withdrawal of support or perpetuation of a vegetative state. Sometimes it is clear: "Aunt Bessie always told us to just let her go if this happened." Other times it is not so easy, but in any case the current effort is to dutifully respect the patient's wishes.

I read through the link you provided. I believe Singer's approach to be not so biased as to be misleading and a well-written piece. He is not quite dispassionate though which I believe to be his attempt to be provocative.

Thought on this topic and familiarity is, I believe, necessary to balance rationality with compassion.

[Progo35]

The thing that to me, makes his views dangerous is that he is the head of Bioethics at Princeton University, despite his views that, while they may not be hate in the classic sense of the word, are based on arguments that the Nazis used in the euthanasia program. Princeton chose to appoint him despite this fact. Charles Schwab, a well-respected enterpeneur who has dyslexia, chose to withdraw his funding of Princeton University based on the premise that he would do the same thing if Princeton appointed a member of the KKK. I agree with him.

Moreover, I've read the rest of his "Practical Ethics," and he says that:
-killing certain handicapped people would not lead to racially motivated killings, but doesn't seem concerned about how this would impact the disabled community

-says that he does not support involuntary euthanasia against the wishes of a parent or individual yet has said nothing about the application of Futile Care laws, which, interestingly, were put into place in Texas shortly after his Princeton appointment in 1998.

This man is shaping the next generation of young people who will likely run this country. He espouses such philosophies to his students. He spearheaded the animal rights movement, but feels that killing a retarded infant is comparable to killing a worm.

So, his views are more than controversial, they have been recognized and awarded in academia. Singer isn't the only one. Another Australian physician (Singer comes from Australia), advocates making the newly patented European euthanasia pill available in supermarkets to "the troubled teenager.")

http://www.nationalreview.com/commen...mith112602.asp

Also, for all his mercy killings in the name of "compassion," Kevorkian's motives may be far more disturbing, as this article by Wesley J. Smith articulates: http://author.nationalreview.com/latest/?q=MjE2MA==

Coupled with this consider futile care: http://article.nationalreview.com/?q...wOWZjMzUzY2EwN

http://author.nationalreview.com/?q=...EyOWVlYjE4NTk=

also see Smith's other articles:http://author.nationalreview.com/?q=MjE2MA==

Of course, this is all from one person's perspective, but Smith has served as a presidential consultant on bioethics and came to our honors class at school to discuss such issues, so I think that he's a credible source.


it's scary to me when a Princeton Ethicist says, "we must not make the mistake of labeling everything the Nazis did as wrong"-not in the link I posted but in his book.

I'm glad that doctors like you, Scott, are thinking about these issues.

[Progo35]

This is a letter that, when I have finished my work, I will edit and send to presidential canidates and other govnt leaders. As an argument/advocacy measure, I would welcome any further comments from Soulforce advocates who have taken similar measures in regard to LGBT issues.

Dear Senator:

Freedom of choice is an American value that I hold dear. Although it has served many different agendas, it has remained a cornerstone of the democratic society we enjoy. Several decades ago, this freedom of choice began to be applied to the issue of euthanasia. The argument for a choice in deciding when to die was largely motivated by compassion for those suffering from painful, incurable illnesses and was also a reaction against the medical practice of resuscitating dying patients who had begged not to resuscitated.
While citizens of the United States have various opinions on by-choice euthanasia, citizens of all backgrounds would agree that Futile Care Laws violate freedom of choice principles in a grossly un-American and unconscionable way: if it were clear that such laws existed. Nevertheless, this issue has not taken its due place in the public eye, so that many people do not know that this is being practiced in certain states.

Futile Care Law allows doctors to discontinue treatment for patients on Medicaid who they feel will not improve with continued care. They are authorized to withdraw respiratory support, feeding tubes and to deny life-saving procedures. Most notably, Texas’ application of this law gives patients only 45 days to find another hospital to provide treatment, while the hospital ethics committee determines whether or not this patient should live. Because of this law, at least three patients have died. A fourth, Emilio Gonzales, would have died recently if he had not succumbed to his condition before his case could be decided upon by a local judge. Federal judges refused to hear the case.

This is not the abortion debate that dominated the 60s and 70s. At this time, pro-choice advocates argued that a woman had a right to control her own body and couples the right to decide whether to become parents. In this case, advocates were fighting for the woman’s choice. Doctors who support this legislation, however, say that family members are too emotionally involved to make a “rational” decision regarding the quality of their loved one’s life. This argument would never stand in the face of abortion, as doctors are never allowed to force decisions regarding this procedure.

Moreover, Futile Care puts life and death power in the hands of doctors, giving them dictatorial power over vulnerable people’s lives. This represents autocracy that our forefathers fought against. In respect to those who died to make this a free nation, we must no usurp an individual’s right to continue receiving medical treatment or to demand it on behalf of a family member. To do so, frankly, crosses the line from a controversial medical practice to legalized murder. This is what killing someone who doesn’t want to be killed or cannot consent to being killed is.

Furthermore, I have been alarmed at the volume of individuals who believe that those on Medicaid have limited rights in terms of their medical care. Those who argue that severely disabled individuals drain this country’s resources are putting a higher value on the lives of non-disabled, healthy individuals, which turns American citizens into socially-usable exponents. The innocent individual’s right to live should not be secondary to tax-payer concerns, political agendas, or value judgments. To do so applies euthanasia in the same way the Nazis did during Hitler’s reign as chancellor. While many consider this comparison to be unduly severe, it is a fact that monetary considerations, coupled with utilitarian ethics and emotionally-manipulative arguments concerning the value of disabled people’s lives drove the Nazis’ euthanasia policies and lead to its expansion from severely disabled infants to those with mental retardation, physical impairments, mental illness and learning disorders. Regardless of how severe a patient’s case my be, his family is entitled to make decisions to preserve his life. When a family makes the decision to discontinue care, it should be only when someone is in the final stages of an incurable illness and should not include the withdrawal of food or fluids. Family’s who may have abused their loved on should be subject to social service intervention to preserve the individual’s life and the quality thereof.
Under-riding the ethic that has supported such legislation is the idea that the lives of those with severe cognitive disabilities are untenable, horrible existences that are worse than death. This belief, however, is not fairly considered in conjunction with opposing views. For instance, the case of Karen , who was falsly believed to be in a PVS state and almost starved to death received little media coverage, even though she publicly testified that she was in excruciating pain and agony. Instead, during the Terri Schiavo case, the media repeatedly publicized doctor reports of how “peaceful” Terri’s dehydration was. Doctors who vehemently opposed this act as painful were relegated to sidelines based on the “right to die” argument that Terri wanted to die, despite the fact that she had nothing in writing attesting to this and her husband, who was living with another woman and rarely went to see Terri, had a record of marital abuse. Moreover, this case received daily news coverage as a grey case of family responsibility while cases like Emilio’s received next to nothing.