Changing notions of death-3: Doctors versus guardians

In part 1 and part 2 of this series of posts, we saw how the idea of when someone had died had shifted to the point where people in a persistent vegetative state could have their life support systems removed because they are considered to be ‘effectively’ dead. But even if the family is agreed on what action should be taken with a family member in a persistent vegetative state, there are already moves under way to shift the bar even lower. The question now being raised is as to what should be done if the doctors determine that further treatment is futile but the family does not want to remove life support.

In a recent case in England, doctors had recommended that an 18-month old infant (identified as just MB) who suffers from the severest form of spinal muscular atrophy – an incurable and progressively worsening condition leading to complete paralysis – be allowed to die. The parents objected and the matter went to trial.

On March 15, 2006, the judge ruled in the parents’ favor, refusing to declare that it would be lawful to withdraw life-sustaining ventilation.

A momentary look of wistfulness passed over the face of MB’s mother as the judge listed five possible options, one of which was to allow the child to die peacefully in his parents’ arms – the one favoured by the paediatricians. The parents have fought long and hard against the received medical wisdom of the case, even though, as the judge said, they may be deluding themselves that their son has a future.

At long last, Mr Justice Holman gave his ruling that the boy shall live, if not perhaps for long.

In that case, the judge in England did not shift the goal posts on what constitutes death or the conditions under which people are ‘allowed to die.’

But people might be surprised to know that a similar situation had occurred in the US and that doctors and hospitals were allowed to override the family’s will. Remarkably, this little noticed event took place on March 15, 2006 during the high point of the events surrounding Terri Schiavo.

While Americans were riveted by dramatic events unfolding in Pinellas Park, Fla., a five-month-old Houston baby took his last breath after a hospital let him die despite his mother’s objections.

Sun Hudson was born Sept. 25 with thanatophoric dysplasia, an incurable and fatal form of dwarfism. Doctors said his tiny lungs would never fully grow and that he would never breathe on his own.

Hudson’s mother, Wanda, put up a fight when doctors advised removing Sun from a respirator. She said she did not believe in sickness or death. (my italics)

This was the first time that life support was removed over the objections of the legal guardian and without any advance directives from the patient, such as a living will. Perhaps the ultimate irony, if not outright hypocrisy, was that this Texas law was signed in 1999 by then Governor George W. Bush. The baby Sun Hudson was allowed to die in Texas against the wishes of his mother because of a state law then-Governor Bush signed, on the very same day that now-President Bush dramatically cut short his vacation and flew back to Washington to sign the federal law that supported the parents’ right to keep life support continuing for Terri Schiavo.

The doctors were able to override the mother’s wishes on March 15, 2005 because the case took place in Texas and that state has a law that authorizes doctors and hospitals to override the wishes of the patient’s families. The hospital took this action under the The Texas Advance Directives Act (1999), also known as the Texas Futile Care Law, which according to Wikipedia, “describes certain provisions that are now Chapter 166 of the Texas Health & Safety Code. Controversy over these provisions mainly centers on Section 166.046, Subsection (e), which allows a health care facility to discontinue life-sustaining treatment against the wishes of the patient or guardian ten days after giving written notice.”

As with the case of shifting the definition of death from heart dead to brain dead, serious ethical issues are raised by this act. There are concerns that this law was passed because hospitals did not want to shoulder the cost of maintaining life support for patients who cannot pay for it. Although the law (as I read it) does not explicitly say that the inability to pay for life support can be a reason for termination of services, it is easy to see that financial considerations are going to come into play.

It is unlikely that patients who have rich families who can pay the bills are going to have their wishes overridden and life support removed. But one can see why hospitals, which have become businesses, would not like the prospect of indefinitely providing expensive life support care if they have no hope of being reimbursed. What adds further suspicion to the view that commercial concerns are significant is that if another hospital is willing to accept the patient, then the patient can be shifted there. But it is unlikely that another hospital is going to accept a new patient who requires extensive life support when that patient is unable to pay.

This blatant hypocrisy and contradiction between Bush’s behavior as governor of Texas and as President later did not go completely unnoticed, though it did not get the attention it warranted. In an editorial on March 22, 2005, the Concord Monitor voiced concern over the implications of the Texas law:

On the same day President Bush interrupted his vacation and rushed to Washington to sign the Schiavo bill, a Texas hospital removed the breathing tube keeping 6-month-old Sun Hudson alive. According to The Houston Chronicle, the hospital’s action, the first of its kind, was made possible by a 1999 bill signed into law by Bush, then Texas’s governor.

That law allows hospitals to discontinue life-sustaining care even when doing so runs counter to the wishes of the patient’s guardians. Before ending the patient’s life under the law Bush signed, however, two conditions must be met. Doctors must deem that there is no chance for recovery and the patient must be unable to pay the hospital bill for continuing care. (my italics)

Added John Paris, a medical ethicist at Boston College, told Newsday “The Texas statute that Bush signed authorized the ending of the life, even over the parents’ protest. And what he’s doing here is saying, ‘The parents are protesting. You shouldn’t stop [treatment]'”

Apart from this being another example of Bush subordinating principle to political expediency, it also clearly shows that society is steadily lowering the bar on death, first making it a judgment of whether someone is ‘effectively dead’ and who gets to make that decision, and now coming down to the question of whether someone is worth keeping alive and putting that decision (at least in Texas) in the hands of doctors and hospitals and not parents and guardians. While the judgment that further treatment is futile may be a medical and scientific judgment, the decision to withdraw life support will undoubtedly be also driven by financial considerations as to whether the patients and their families can pay the cost of continued treatment.

To be continued. . .

POST SCRIPT: Canned bird hunts

When not shooting old friends in the face, ‘Deadeye Dick’ Cheney kills birds for fun, and has killed up to 70 pheasants in just one shooting session. What is more, the birds he shot were bred in captivity to make them easy targets and one wonders what kind of fascination he finds in personally slaughtering such a large number of tame birds.

The comic strip Doonesbury suggests one reason, and Nate Corddry from The Daily Show tries to find out what the thrill is by going on one such canned quail hunt and bringing back a report.

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