The brother of Terri Schiavo, the 41-year-old brain-injured woman who died six years ago today due to court-ordered dehydration and starvation, finds the recent clamor over imminent Obamacare “death panels” moot because health-care rationing already exists.
“Hospital ethics committees already act as ‘death panels,’” Bobby Schindler told WND. “They’re making decisions on life and death and rationing care. That’s the big, dirty secret out there. Families come up against these ethics committees who can overrule what the advanced directive says, and what the family is advocating for, and they have no one to answer to.”
A survey by the National Right to Life Committee’s Robert Powell Center for Medical Ethics conducted in April 2005 found the laws in all but 10 states leave the door open for doctors and hospitals to disregard patients’ advance directives, or living wills.
In the era of The Patient Protection and Affordable Care Act, commonly referred to as Obamacare, hospitals apparently no longer feel a need to be secretive, but boldly assert their unchecked authority.
In a recent blog, longtime bioethics critic, author and attorney Wesley J. Smith linked to a paper he said was about to be published in the Journal of Law and Medicine promoting a model futile-care hospital protocol that allows ethics committees to overrule patient advance directives and outlines how they’re to go about it.
And if the patient or their proxy objects to an ethics committee’s decision?
“The physician must relinquish his or her responsibility for the patient’s care, and/or assist in the transfer of the patient to a physician who is willing to comply with the patient’s wishes, or, if required by law, must assist with the patient’s transfer to an alternative care setting within the healthcare facility or to a different facility,” reads Wesley’s excerpt.of the paper.
Increasingly, the clash of patient/proxy wishes with caregiver intentions lands in court, as in the recent cases of “Baby Joseph” Maraachli and Rwandan refugee Rachel Nyirahabiyambere.
In the latter, the court ruling came down on the side of preserving life.
As WND reported, Judge Nolan Dawkins in Alexandria, Va., ordered guardian Andrea Sloan and Georgetown University Hospital to provide food and water to stroke victim Rachel Nyirahabiyambere, 58, a refugee from the violence of Rwanda, who has been incapacitated since April 2010.
Sloan, who was appointed guardian by the court at the request of the hospital, obtained a court order to remove Nyirahabiyambere’s feeding tube in favor of palliative care on Feb. 19. The woman’s six children – including two U.S. citizens – objected and mounted a challenge with the help of attorneys with the Alliance Defense Fund.
“Innocent life deserves to be protected. ADF is pleased that the court agreed to put the brakes on this rush to intentionally starve a defenseless woman to death. It’s a simple decision to respect the family’s wishes and protect the life of this Rwandan genocide survivor,” said ADF legal counsel Casey Mattox.
Meanwhile, in the case of “Baby Joseph,” Ontario, Canada’s top court sided with the hospital’s desire to hasten death, ruling it could pull the 13-month-old’s life-sustaining breathing tube over the objections of his parents.
The infant suffers from a progressive neurodegenerative disease that is fatal. The family sought a tracheotomy in order to care for their son at home while likely extending his life by weeks or months.
London Health Sciences Centre in London, Ontario, refused to perform the tracheotomy on the boy, calling it “invasive,” “not a palliative procedure” and futile care.
“Care isn’t deemed futile because it doesn’t work, but because it does,” Smith points out in his blog. “Hence, it is the patient being declared futile.”
“If there is a chance this boy can live, we have to explore every option,” declared Father Frank Pavone, national director of Priests for Life.
Pavone’s organization is paying for the infant’s stay at SSM Cardinal Glennon Children’s Medical Center in St. Louis, Mo., where he was transferred following a four-week effort waged by a number of doctors, lawyers, parents and pro-life activists, like Schindler and his sister, spear-headed by community organizer Sam Sansalone, that culminated in five days of intense and contentious negotiations between the Canadian hospital and Ohio physician Dr. Paul Byrne.
The child underwent surgery for the tracheotomy on March 21 and remains in intensive care.
For Schindler, similarities with the “Baby Joseph” case brought back painful memories of Terri’s case.
“I don’t want another person to have to watch a loved one die, and then watch their parents die because of it. That’s what happened to my father,” said Schindler of Robert Schindler, who died of apparent heart failure at the age of 72 on Aug. 29, 2009.. “My dad told me he was never able to forgive himself for not being able to save Terri.”
In the wake of her death, the Schindler family established an organization, now called the Terri Schiavo Life & Hope Network, through which they dedicate their lives to fighting to protect the rights of people with cognitive disabilities. Over the past six years the Network has communicated with more than 1,000 families and has been involved in roughly 200 cases, including that of “Baby Joseph.” They are happy to have participated in many victories for patients.
“We’re not battling Michael Schiavos now, we’re battling doctors and hospitals,” Schindler told WND in a reference to Terri’s estranged husband who sought the removal of her feeding tube over the Schindlers’ objections.
His court victory came after a protracted 11-year battle and despite the unprecedented intervention of the Florida Legislature, Gov. Jeb Bush, Congress and President George W. Bush.
“We’re not about keeping everyone alive in every circumstance,” Schindler emphasized. “There are times when it’s appropriate to stop medical treatment. We’re involved in cases where the person is not dying and we’re talking about [the removal or denial of] basic care – food and water.”
Obamacare promises to intensify the battle over health-care rationing. Specifically, the law empowers the Department of Health and Human Services to impose so-called “quality and efficiency” measures on health-care providers, based on recommendations by the Independent Payment Advisory Board, established to keep private health-care spending below the rate of medical inflation.
In the words of the author of the futile-care hospital rationing blueprint: “Medically futile care creates challenges for hospitals attempting to provide effective and efficient care in a world of limited resources.”
In other words, the bottom line is money, translates Smith.
It is feared the estimated 50,000 to 100,000 people living with brain injuries – and the newly brain-injured servicemen and women returning from Afghanistan and Iraq – will be among Obamacare’s first targets.
“How can we not stand up for these people? Politicians should stand up and fight for these people,” said Schindler, “but unfortunately, there’s an incredible amount of apathy in this country. I think we’re on a runaway train and nothing’s going to stop it. All we can do is try to save lives through education and changing hearts and minds. We need to get people to realize that individuals like Terri deserve our compassion.”
Diana Lynne is a former WND news editor whose coverage of the Terri Schiavo case dates back to November 2002. In mid-2005 she authored “Terri’s Story: The Court-Ordered Death of an American Woman” for WND Books.