Baby Joseph battles

The hospital involved in this sad story is representing itself as allowing the family’s wishes to take their child home to die there instead of in the stark atmosphere of the medical facility. And some news stories have reported that the parents are getting their wish, after all. Not exactly true…

Here’s the most thorough account at the moment.

…the hospital where Joseph is being kept said it is willing to send him home, but with an important catch: they still refuse to perform the tracheostomy that allowed a sibling of Joseph’s who had a similar condition to live another six months at home. Instead they will simply return Joseph home, and then remove his ventilator, after which he will almost certainly die within a matter of minutes…

Alex Schadenberg of the Euthanasia Prevention Coalition, who has been working closely with the family, told LSN that this solution is unacceptable to them…

“They need to do a tracheostomy,” said Dr. Paul Byrne, an Ohio neonatologist with nearly five decades of experience and a former president of the Catholic Medical Association.  “If the baby is stable otherwise, and has a tracheostomy, then the baby can be taken care of at home.”…

Dr. Byrne called the attempt to have the state remove Joseph’s ventilator “terrible, absolutely terrible,” and insisted that in his fifty years in neonatology he’s never removed a child’s ventilator.  “I’ve never seen a time to turn off a ventilator,” he said.  “If a baby has a disease process that’s so bad that they’re going to die, then they die on the ventilator anyway.  So you don’t have to stop the ventilator.”

This is a very important clarification of the case and the issues involved.

He also criticized the common phrase “life support,” saying, “Life is either there or it’s not there. You don’t have to hold up the life.  What we do in medicine are actions … that support the vital activity of respiration.”

“Assuming doctors can do something to support the vital activities, we ought to do them,” he explained.  “And a tracheostomy ought to be done, and the baby ought to continue on the ventilator.”

Further clarification…

Though doctors have said Joseph is in a “vegetative state,” Dr. Byrne called it a “made-up term” similar to the notion of “brain death,” which he said was invented “simply to get beating hearts for transplantation.”

Even Joseph’s doctor in London has admitted that the tracheostomy could prolong his life.  “A tracheotomy would likely provide for a longer period of life, however, in our view would not result in improvement of well-being and could reduce quality of life,” Dr. Douglas Fraser told the Ontario Consent and Capacity Board in January.

Key phrases there, the baby’s “well-being” as seen “in our view,” that of hospital panels and government boards. That’s the scenario we’re all facing, increasingly, with health care rationing. The “quality of life” calculus doesn’t account for the sanctity of life.

‘Death panel’ debate revived

Over the Christmas holiday, the Obama administration inserted ‘end of life’ counseling into the health care plans for Medicare patients when few were paying attention. They are now.

On Christmas Day, the New York Times reported that although Democrats had dropped the proposal when it caused public controversy, the Obama administration sort of did an end run around the process.

Under the new policy, outlined in a Medicare regulation, the government will pay doctors who advise patients on options for end-of-life care, which may include advance directives to forgo aggressive life-sustaining treatment.

Congressional supporters of the new policy, though pleased, have kept quiet.

Until this one put out a memo on it. Urging stealth.

Rep. Earl Blumenauer (D-Ore.) is distancing himself from a memo sent by his office that urged health reform advocates not to advertise new end-of-life counseling regulations to avoid reviving talk of “death panels.”

The weeks-old memo recommended that end-of-life advocates celebrate a “quiet” victory out of concern that Republican leaders would “use this small provision to perpetuate the ‘death panel’ myth.”

In the memo, his office

expressed concern that new attention to end-of-life care planning could doom an end-of-life provision included in a Medicare regulation issued last month.

“Thus far, it seems that no press or blogs have discovered it, but we will be keeping a close watch and may be calling on you if we need a rapid, targeted response,” the memo read. “The longer this goes unnoticed, the better our chances of keeping it.”

Then came the Times story.

“It doesn’t help that advocates wanted to keep it quiet,” (a Democratic health policy) source said, “because it’s impossible to keep anything quiet in this town.”

Democratic strategist Bill Galston agreed Blumenauer’s office hurt Democrats’ defense of the provision by trying to keep it a secret.

“It was stupid,” Galston told The Hill.

However, Blumenauer’s new political strategy is to essentially dare congressional Republicans to make this end-of-life counseling regulation a target when their larger goal is ‘repealing the entire reform law.’

So ‘death panels’ are back as a matter of debate. Are they really that sinister, and just what will this mean? Wesley Smith answers “rationing.”

Indeed, under the economics of much of health care today, medical professionals and institutions often make less money–or sustains a greater loss–the sicker and more care a patient needs.

Moreover, as we have discussed here, some very powerful medical groups support rationing, as does Dr. Donald Berwick, the (temporary) head of Medicare.

Bioethics committees will calculate a quality of life formula, he says, and even decide when patients’ advance directives ‘should’ be overruled on the basis of this “cost/benefit analysis.” So…’s not exactly a ‘death panel’, he says.

But those who worry about seniors and other Medicare recipients, such as people with disabilities, being abused by explicit and futile care-style rationing in the medical system, are not paranoid alarmists.  To the contrary: The danger is clear and present.

The new 112th Congress is open for business Wednesday. This debate to be continued…

Dysfunctional ‘family guy’

Anyone familiar with the Fox channel’s satiric show ‘Family Guy’ already knows how irreverent its writers are about real family values and things like respect and common decency, which is growing increasingly uncommon. Just like common sense.

There was none of either – decency or sense – in a recent episode of that show when they tastelessly and offensively ridiculed Terri Schiavo and her end-of-life ordeal that gripped the nation before she passed away, five years ago. Her family’s foundation, which works tirelessly to protect and defend the cognitively impaired, and educate the public who about science, medicine and law we all need to know, made an outcry against the Fox series and commercial sponsors who would support such a degrading show.

In this sketch, Schiavo is mocked and the memory of the suffering she endured ridiculed – portrayed as someone on a number of mechanical life support systems. She is referred to as a vegetable. Both inferences are false regarding Terri’s case! The sketch ends with characters calling for pulling the plug.
Terri’s brother, Bobby Schindler stated: “My family was astonished at the cruelty and bigotry towards our beloved sister, and all disabled people that we witnessed in this show. My first thought was how this attempt at satire must have been enormously difficult and painful for my mother.
“After further thought, I realized that using my deceased sister as fodder for satire also validates what our family has been saying for many years. There is growing, deep-rooted prejudice against people with brain injuries and other cognitive disabilities. This sort of bare-faced bigotry is dehumanizing to those with disabilities and cruel to those who work tirelessly to ensure that people with disabilities are provided the proper care, protection and respect. People are not vegetables.”
Terri Schiavo was not kept alive on mechanical life support. She made use of a feeding tube after some doctors determined it safer for her than swallowing food and fluids on her own.
“The depiction of Terri in The Family Guy episode on March 21 is not only inaccurate,” states Schindler, “it seems to take the position that certain people are simply not worthy of receiving medical care because they are viewed as burdens on the health care system.”

And that’s a road we’re about to go down with the sweeping health care legislation now signed into law. Experts familiar with it predict health care rationing – to a degree we have not seen in programs like Medicare and Medicaid – are certain in the forseeable future, and the most vulnerable and needy citizens will be the ones denied limited and costly health resources. The culture of misinformation and distortion in both news and entertainment media are sometimes callous and indifferent, but sometimes worse….when they craft their messages to re-shape public opinion to see cognitively impaired human beings as dependent, costly and of less value than other classes of what they would call ‘healthy.’

Health and care have become increasingly relative terms. When it’s your relative, funny how treatment matters more.