Congress given options for better end-of-life care

A U.S. Senate hearing originally intended as a way to keep a brain-damaged Florida woman alive, instead turned into a session in which witnesses lectured lawmakers on how to better help those with severe disabilities.

The session by the Senate Health, Education, Labor and Pensions Committee on “health care provided to nonambulatory persons,” was originally scheduled for March 28th, and included invitations to Terri Schiavo and her husband Michael, who fought a years-long court battle to have his severely brain-damaged wife’s feeding tube removed.

Senate leaders originally thought the invitation would bar Michael Schiavo from removing the tube because it would amount to “tampering” with a federal witness. Congress, however, subsequently passed legislation directly giving federal courts authority to review the case, and the feeding tube was removed late last month, resulting in Terri Schiavo’s death last week.

At the hearing, however, witnesses said there are more constructive actions Congress can take to help people prepare for situations such as Schiavo’s.

For example, testified J. Donald Schumacher, President and CEO of the National Hospice and Palliative Care Association, Congress could pass the bipartisan “Advance Directives Improvement and Education Act.”

That bill would authorize a large-scale education campaign about “living wills” and other legal means of expressing individual desires about life-preserving care; it would allow Medicare beneficiaries a free doctor visit to discuss such issues; and it would ensure that advance medical directives are recognized by states other than the one whose laws they were originally drafted under.

Such a bill, said Schumacher, could “increase the number of people in the United States who have advance directives, who have discussed their wishes with their physicians and families, and who have given copies of the directives to their loved ones, healthcare providers, and legal representatives.”

Congress could also pass the long-delayed “Family Opportunity Act” and the “Medicaid Community-based Attendant Services and Supports Act,” testified Rud Turnbull, co-director of the University of Kansas Beach Center on Disability and father of an adult son with mental retardation. The former measure would make it easier for families with disabled children to qualify for Medicaid health coverage, while the latter would make it easier for disabled individuals living in institutions to live in the community instead.

What Congress ought not do, said Turnbull, is cut funding for the Medicaid program, as President Bush and the U.S. House have proposed. “Preserving Medicaid as an entitlement is absolutely necessary for people with disabilities,” he said.

The most heated criticism of Congressional action in the Schiavo case came from the panel’s senior Democrat, Edward Kennedy of Massachusetts, who is a lead sponsor of the Family Opportunity Act. He said that in the Schiavo case, “Republican leaders abused their positions of power to play politics with Terri Schiavo’s life.” End-of-life decisions such as those, Kennedy said, “are times for deep prayer and wise counsel, not craven politics.”

Provided by ArmMed Media
Revision date: June 22, 2011
Last revised: by Amalia K. Gagarina, M.S., R.D.