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WASHINGTON—For any family who has paced anxiously in the halls of a hospital, mulling over decisions about loved ones near death, bills and attorneys' documents are far from their minds.
But those are often the practicalities that have to be dealt with. If the patient has not signed an advance directive stating how to be treated in case of incapacitation, which most Americans haven't, then the family is torn between wanting to pursue every cure possible and wanting to lessen their loved one’s pain—often with high costs.
Terri Schiavo was in the middle of a familial tug-of-war that ended with the removal of her feeding tube in 2005. She was 41 and in a vegetative state when she died, raising questions across the country about the right-to-die, the sanctity of life, and the definition of “personhood.”
Her name was in the air Wednesday as senators who make up the Special Committee on Aging met to discuss legislation and federal funding for end-of-life care.
End-of-life decisions belong to the family, not the government, argued Sen. Ron Wyden (D-Ore.), who said he voted against legislation to halt Schiavo's death in 2005.
"It's a discussion more than anything else about free will," said Sen. Sheldon Whitehouse (D-R.I.), who chaired Wednesday’s hearing. Whitehouse emphasized, along with other Democrat senators at the hearing, that health care providers should be enabled to minimize a patient’s pain, avoiding unnecessary treatments that often end in "turning a person we love into a snarl of tubes and wires."
If aliens came to earth, Whitehouse said, "they would wonder why it is we choose to torment the dying."
The questions about death's door decisions come just ahead of the Bush administration's planned Medicare cuts set to go into effect Oct. 1, which would dock about $2.2 billion in funding to hospice care over five years.
Sen. Susan Collins of Maine, the lone Republican at the hearing, urged members to reverse the cuts.
"This makes no sense at all," Collins said of hospice cuts. "[Hospice care] is more compassionate ... it's less expensive."
Many hospice care providers agree, saying that hospice care saves families money and makes the dying process less wrenching.
"What I think the Bush administration is trying to do is increase regulation on hospice agencies," Mark Mollenkof, a Christian hospice nurse in Chattanooga, Tenn., told WORLD. "It's going to limit what we can do with families to help them through the dying process."
The Senate committee and the witnesses present were able to talk about pull-the-plug decisions and death without discussing personhood once. Whitehouse mentioned preserving patients' "humanity and dignity," in reference to their ability to choose their terms for death. There's a fine line between giving the "dignity" of a quick death, it seems, and recognizing the dignity of a person deserving unrelenting medical help. How doctors define dignity and personhood must be part of a discussion about when to let people die.
"We're not there to help people die," said Mollenkof. "We're there to help people go through the dying process."
But with philosophical insight, witnesses at the hearing said the problem is that most Americans aren't prepared to face their final moments, leaving families in moral and legal quandaries.
"Most people don't want to die," said Diane Meier, a professor of medical ethics at the Mount Sinai School of Medicine in New York, after her testimony to the committee. Family members sometimes override the legal requests of a dying patient who is incapacitated in the moment, she said.
As families make real-time decisions for incapacitated patients, the laws on those decisions vary from state-to-state. Along with an array of statutes, people in hospitals and hospice care approach death in an array of different ways.
"Different cultures have different mindsets about life and death—African American, Asian American ... even between first and second generations," said Oklahoma Attorney General W.A. Drew Edmondson, who also testified Wednesday, explaining why passing legislation on end-of-life decisions is difficult and how that difficulty is compounded by differing state laws. "I'd like to see a lot more uniformity across the nation."
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