Should American health care be rationed?

US News and World Report offers Two Takes on this issue : Michael Tanner of the Cato institute in Washington DC says yes and Laura Hershey, disability advocate, says no.

Laura's piece is entitled Handicap is Not a Death Sentence and Should Not be Treated as One. Here are a few excerpts:

The situations that worry me most are those involving different definitions of "futile" and "effective." Some nondisabled people think that having a disability is an intolerable state and that medical care can't be considered efficacious unless it restores lost physical or mental functions. In one glaring example, the University of Wisconsin Hospital denied antibiotics to two developmentally disabled people admitted with pneumonia. They needed lifesaving treatment, which was withheld, causing the death of one man. The other finally did receive treatment, at the insistence of his family, and survived. A disability rights group is suing the hospital for discrimination.

...

Quality of life" arguments are used to bolster these decisions, but the real driver may be cost concerns. While insurers and private hospitals generate huge profits, our healthcare system fails to serve many Americans. It's true that sometimes the opposite happens: People are pressured to accept treatments they don't really want. But overall, the right to refuse treatment is extensively protected by statute and case law and respected by medical practitioners. In contrast, the right to lifesaving treatment is not specifically protected and is no longer necessarily the default option.

Some prominent bioethicists, seeking easy scapegoats for escalating healthcare costs, increasingly question the value of providing care to people with disabilities, whose lives they (mistakenly) consider undesirable.

***

More of Laura Hershey's writings, including poems, can be found at her site.

Terri Schiavo documentary now in DVD

Media dis&dat reports that a documentary about Terri Schiavo has now been released in DVD. Entitled the Terri Schiavo story, the film was first produced as an episode for the Joni & Friends television series, and Joni Tada was involved in the real life story.

“The story remains relevant because there are countless people like Terri Schiavo whose lives are in grave danger because of unclear custody and guardianship laws,” Tada said. “Plus, more states (under futile care policy directives) are quietly removing the feeding tubes from brain-injured people when families abandon their responsibilities. Feeding tubes are providing basic care, not medical treatment.

“I hope that people understand that Terri Schiavo’s story is really our story,” Tada said in the release. “We have a special obligation to protect the weak and vulnerable in our society. We have a responsibility to uphold their human dignity—because we are of equal dignity, we are not at each other’s disposal. The weak and the vulnerable need their rights safeguarded and protected... we must not allow them to become eroded. For when we do, we are jeopardizing the rights of us all.”
via FloridaBaptistWitness.com

Visit here for the site of the movie.

h/t Media dis&dat

Futile care law changed- UPDATE

Efforts in the Texas legislature to extend deadlines accompanying the futile care law failed when the House did not act to pass the bill this week.

UPDATE: A bill passed the Texas Senate unanimously that would "extend the initial notification period to five days, and would give families a minimum of 21 days to look for a transfer to another hospital after the ethics committees' decision. The measure would also prevent hospitals from using the law on patients whose only life-sustaining treatment is artificial hydration and nutrition."

Via Inclusion Daily News

Baby Emilio passes away

Emilio Gonzales died in his mother's arms the family attorney told MSNBC. The toddler, who was in the middle of a controversy involving the futile care law in Texas, had Leigh's disease.

On the 80th Anniversary of the Buck decision and Contemporary Trends in Eugenics

"This month marked the 80th anniversary of the disgraceful Supreme Court decision in Buck v. Bell, which upheld Virginia's involuntary sterilization laws. In his majority opinion, Holmes declared: "It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind . . . Three generations of imbeciles is enough."
...Though society may be inclined to regard Holmes's detestable opinion in Buck v. Bell as a relic of a time past, eerie similarities exist in contemporary remarks of the well-respected."

Via Washington Post Op Ed by Andrew J. Imparato is president and chief executive and Anne C. Sommers is the policy counsel of the American Association of People With Disabilities, based in Washington.

This op ed explores the current trend in eugenics in legislation such as the futile care law, Britain's Royal College's argument for active euthanasia a la Peter Singer, increased prenatal testing, and perception of the disabled as "burdens" and "defective".

The authors write:

"On this 80th anniversary of Buck, let's not foolishly believe that victims of eugenics are an artifact of history. So long as we speak in terms of good genes and bad genes, recognize a life with a disability as an injury, and allow health policies to value some lives over others, we continue to create human rights violations every day."

"Futile Care in Texas" Via Open Book

Open Book has a discussion going on about the futile care law from a Catholic point of view. Some interesting discussion there - click above to read and follow my tags below to read what I've written on this subject.

Hearing for baby Emilio postponed until May 8

Attorneys for the child's mother now have more time to try to find another hospital to take the child after a court postponed the hearing on the futile care law case from April 19 until May 8. Click above to read the article.

Judge sets hearing, orders baby Emilio be kept on life support

"Probate Judge Guy Herman set a hearing for April 19 for both sides to present evidence in the case of 17-month-old Emilio Gonzales.

Children's Hospital of Austin has been caring for Emilio since December and says the effort is futile and the child is suffering without medical benefit. It invoked a state law that allows hospitals to end life-sustaining treatment in such cases with 10 days notice to the family."

Via Houston Chronicle

Petition for Emilio

I am reposting the link to the petition for Emilio Gonzales in Texas , a 16 month old boy who is believed to have Leigh's disease. He is not dying. However doctors have determined under the futile care law that his plug should be pulled. To read more about the futile care law, please click on the label at the bottom of this post. If a hospital cannot be found by Tuesday, April 10, the plug will be pulled on Emilio , he will be taken off his respirator and he will die - against the wishes of his mother under the Futile Care Law.

The petition reads:
"It is not the severity of Emilio's illness that is at issue here. Rather, we are opposed to the state-sanctioned removal of Emilio's life support and the violation of his human and civil rights and protections. We also join his mother, Catarina Gonzales, in her condemnation of doctors "godlike position," and believe her fight for the right of Emilio to live is life-sustaining and life-affirmative. Counter to the perspective of doctors, we do not believe it is undignifying to be on life support. "

Please take a moment to read and sign the online petition to show your
support for Emilio and his mother, Caterina Gonzales. The petition and
signatures will be forwarded to Texas Governor Perry's office.

Futile care law - a death sentence for people with disabilities

I am frightened.

I'm watching how few people are signing this petition for Emilio despite the fact that the Futile Care Law allows a plug to be pulled on a human being over the wishes of his parents and family. It allows a date to be set to put a person with a disability to death and then gives a 10 day time period before it is carried out. It has no safeguards like the usual death penalty for criminals. There is no guarantee to any recourse. Once sentence is pronounced, the clock ticks.

This is even a further encroachment of the rights of those who live with disabilities. This baby's mother has to sit by and can do nothing under this law to stop her own child from being put to death. It places our lives in the hands of a hospital's ethics board. It allows that ethics board to determine what is in our best interest - and we are supposed to believe that the cost factor does not weigh into that.

I don't want a hospital ethics board sentencing me to death one day. I know from living in our society, which worships those who look "perfect" just as it devalues those who are deemed imperfect, that my life is worth less in many peoples' eyes because I have a disabiliity. There is no doubt in my mind that, in the hands of an ethics board, I could one day be subject to a decision, against the wishes of my loved ones, that my life is futile.

Why should I, or any person with a disability, be subject to a death sentence when we have committed no wrong? And yet I hear no outcry, not even from those who oppose the death sentence in the criminal justice sytem. Is this a different standard because the person who is being put to death is disabled? Are we as a society willing to be that blatant in our disregard and contempt for people with disabilities?

For those who choose to remain silent on this issue or fail to step up yet espouse that they believe in the equal value of human life, I am frightened. For those who are apathetic about this tragedy, I am frightened. For those who believe that this child's life is worth less than your own, I am frightened.

We as disability advocates have stepped up and put this issue into view. We have done the work to make people aware. We have spoken up for those who cannot speak for themselves. We are telling you that Baby Emilio's life is not worth less than any other child's. His life is not "futile" to his mother who is fighting to keep him alive.

We are asking that his life be accorded the same dignity and respect that yours is or your child's is. Many who are willing to stand by and allow this, I fear , will only understand when a loved one is in the same position.

Petition against Removal of Life Support for Baby Emilio

Disability Rights advocates work to save Baby Emilio

Groups such as Not Dead Yet, ADAPT, the Feminist Response in Disability Activism, and individual advocates are working to keep doctors from pulling the plug on Baby Emilio, a toddler with disabilities in Texas who has been declared as "futile" under the Futile Care Law. Under the Futile Care Law, physicians must give only 10 days notice before they withdraw treatment if further care is deemed medically futile, even over the wishes of the patient and family. The ethics committee at the hospital, which has been given this Ultimate Authority, has deigned to allow the child's family until April 10 to find a hospital or doctor to care for him before they pull the plug.

This would be done AGAINST THE WISHES OF THE CHILD'S OWN FAMILY, who want him to be kept alive.

Meanwhile there is a bill pending in the Texas legislature which would prevent hospitals from doing this until the family has had time to find another hospital to care for the child.

I will post the petition again on my blog. We only have 300 people and organizations who have signed this.

Anyone else believe in the value of the life of a toddler with disabilities and/or the right of his parents to make the decision?


Via Inclusion News Daily

Futile care law - clock is ticking on baby in Texas

A petition has been started for Baby Emilio - his ten day time period under the futile care law, which was up on Friday, March 23 (when his life support would have been removed against the wishes of his mother), has been extended to April 10 . Kay over at the Gimp Parade has written a post summarizing the information on this case.

Under the Futile Care Law, physicians must give only 10 days notice before they withdraw treatment if further care is deemed medically futile, even over the wishes of the patient and family.

You can sign the petition here.

Futile care law in Texas -

Care of a 16 month old baby with severe disabilities has been deemed "futile" in an Austin Texas hospital under the Texas Futile Care law which I wrote about recently . This means that a 10 day countdown begins. Not Dead Yet has issued a call to people to speak up - information is here.
The baby's name is Emilio.

Futile Care Law from Texas: Another encroachment

Via the Dakota Voice, this article discusses the Futile Care Law which "allows for a physician to decide, in spite of the patient's and family wishes, that care is futile " and along with the ethics commmittee to give 10 days notice to terminate life.