Subcommittee Considers Issues Raised By Terri's Death
By Dave Andrusko

The fallout from Terri Schiavo's death by dehydration will be felt for months and years to come. There will be innumerable hearings, countless witnesses, but probably little media attention, at least in the beginning, as the process gradually begins in earnest.

Such was the fate of an important hearing that took place April 19. The subject matter of the hearing, conducted by the House Criminal Justice, Drug Policy, and Human Resources Subcommittee, was "Federal Health Programs and Those Who Cannot Care for Themselves: What Are Their Rights, and Our Responsibilities?"

As Chairman Mark Souder (R-In.) explained in his opening statement, a primary question for the panel to address is the "support provided by federal Medicaid and Medicare programs for ordinary care of incapacitated citizens who are not in the dying process."

For example, what are the types of treatment options available to them? Are various legal mechanisms, such as advance medical directives or durable power of attorney, sufficient? And, as Rep. Souder pointedly asked, "what protections exist for incapacitated individuals to ensure that their constitutional rights of due process are met?"

In Souder's view, "At a minimum, our federal programs should protect patients rather than pave the way to hasten their death, but we do not have a federal presumption where a person's wishes are unknown and unknowable." The absence of this presumption, he argued, "creates a vacuum where someone else may determine that a patient's life is one not worth living, and this is most definitely a slippery slope."

A number of thoughtful witnesses weighed in, beginning with Rep. Dave Weldon (R-Fl.), who is also a physician. Dr. Weldon noted a heightened interest in living wills following Terri's tragic death.

But Dr. Weldon pointed to the report issued by NRLC's Robert Powell Center for Medical Ethics, which highlighted how, "Increasingly, health care providers who consider a patient's 'quality of life' too low are denying life-preserving measures against the will of patients and families." (See story on page 11.)

Advanced directives are a thin reed to lean on when, according to the Powell Center Report, the laws of 40 states are insufficient to prevent doctors and hospitals from disregarding advance directives even when they unambiguously call for treatment, food, and fluids.

Much of the testimony heard the remainder of the day provided real-life examples from individuals and families who have been on the receiving end of such discriminatory thinking and behavior.

Diane Coleman, president of Not Dead Yet, traced the coverage of Terri's death. Major outlets virtually blanked out the opposition of 26 national disability rights organizations to her dehydration death, because, she said, disability rights advocates "don't fit a script that everyone seems determined to follow."

In their attitude toward disability, they diverge from the mainstream of bioethicists, which was why Coleman believes "we were deliberately excluded from the last decade of policy making conducted off the public radar screen."

She eloquently traced the arc of court cases and articles by bioethicists which have made "it easier for guardians to refuse food and water on behalf of persons who cannot speak for themselves." In a memorable criticism, Coleman charged, "Basically, the bioethicists have warped the palliative care movement into a life-ending movement."

She had a number of suggestions for what Congress could do, which included a "meaningful federal review of contested third party decisions to withhold treatment in the absence of an advance directive or personally appointed surrogate"; obtaining records from hospitals that explain their "futility" policies; and "funding for a disability-rights-based state-by-state review of guardianship and health care decisions laws...along with comprehensive efforts to develop reforms to safeguard against non-voluntary and involuntary euthanasia."

Bob Sedlmeyer told the powerful story of his 19-year-old daughter Valerie who suffered extensive and permanent damage to her brain. Valerie, he said, "is not unlike Terri Schiavo."

He did not sugarcoat the work of caring for a profoundly brain-injured child, but told the subcommittee, "I have come to realize that her life, as wounded and powerless as it is, is not a burden to bear but a gift to cherish."