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By Stephen Drake
Research Analyst for “Not Dead Yet,” a national disabilities group

1. Do you support advance directives? Why or why not?

We support detailed advance directives in regard to people’s treatment preferences.

In the current climate, we stress it’s probably more important to make it very clear what kind of medical treatment you do want, since the default assumption seems to be switching to that of non-treatment for incapacitated persons in the health care system.

For example, the University of Pennsylvania Hospital has announced it
will no longer admit people with a label of “persistent vegetative state” or “minimally conscious state” to Intensive Care unless they have an
advanced directive saying that is what they would have wanted.

2. How could advance directives be abused?

One of the greatest dangers is over-interpretation. Someone who states on a form they don’t want measures such as a ventilator or tube-feeding may be thinking in terms of not wanting these as a permanent measure.

Regardless of what they might have meant, a directive that specifies
neither of these measures can come into effect even if their use is
expected to be short-term. It can even be true if there is a possibility
that the individual might regain communication ability in the future.

Another area of abuse stems from people’s “blind faith” in medical
labeling. Most people are probably under the impression that a
“vegetative state” is a simple diagnosis. In fact, several studies have indicated that the misdiagnosis rate of persistent vegetative state runs as high as 43 percent. An error rate like that is serious in and of itself — it’s even more serious when someone’s life hangs in the balance.

I think it’s fair to say that people need to take into account the fact
that physicians are increasingly directive in urging nontreatment if they think the prognosis is unsatisfactory. Numerous studies indicate some medical professionals grossly underestimate the quality of life of people with disabilities compared with what we ourselves report. The same
professionals are also more likely to regard certain disabilities as
“worse than death” than are the public or families of people with
severe disabilities.

3. Should a verbal directive be enough? Why or why not?

If by “verbal directive,” you mean statements that others claim the
individual said about preferences, then no. Something as serious
as withdrawal of nutrition and medical treatment should only be done when there is a written record of the person’s wishes or they specified a health care proxy in writing.

Obviously, clearly burdensome interventions should be stopped, as in the case of people who experience renal failure during the last stages of a disease process. Their kidneys can no longer process fluids so that hydration does not extend life and also increases suffering.

This is a very different situation than withdrawing food and water from a physically healthy person with brain damage, though.

4. Did the Florida legislature act appropriately in the Terri Schiavo case. Why or why not?

The legislature’s action was entirely appropriate, if a little late. The courts failed Terri Schiavo. Repeatedly. One way the courts failed her was to allow the use of a trust fund dedicated to her medical care to finance the legal effort to end her life instead.

The courts failed when the report of a guardian ad litem was thrown out — a report that said her husband had too many conflicts of interest to represent her best interests.

There is a deplorable history of the judicial system ignoring or sanctioning medical killings of people with disabilities. In Indiana, an infant with Down syndrome was denied simple surgery and starved and dehydrated to death — two judges declined to stop the starvation and dehydration.

Earlier, a medical team in Oklahoma used a “quality of life” formula to
urge non-treatment of babies with spina bifida — a formula that meant that most of the families so urged were poor and uneducated. Twenty-four babies died, most from untreated infections. No criminal charges were ever filed against the medical team. Litigation brought by parents who sued for being given inaccurate and biased information was shot down by several courts and ultimately failed altogether.

Legislatures have to step in when courts fail. Here in Illinois, we had
17 wrongfully convicted people on death row, after the justice system
had dotted all its i’s and crossed all its t’s. The legislature passed
a moratorium on the death penalty. The governor commuted all the
sentences of people on death row.

5. Should laws about directives and the right to life be decided in
the courts or legislatures?

These should be tackled by legislators, but the process needs to be
much more inclusive than it has been. Recent legislative changes
dismantling safeguards and protections for people under guardianship
have come about as a result of lobbying from well-funded “end of life”
groups. These groups are dominated by a professional perspective
and agenda — that of the health-care provider organizations and of
bioethicists. Representatives of people affected by these changes have not been part of the process — disability advocacy groups.

Among the legislative changes urged by “end of life” advocates has been the expansion of the definition of “terminal.”

Earlier this year, over 45 disability groups sent a letter of protest to the Robert Wood Johnson Foundation, Partnership for Caring and Last Acts objecting to their conflation of disability, chronic conditions with people who are “dying.”

On a publicized Web site sponsored by both organizations, Michael J. Fox, who has Parkinson’s, was portrayed as someone who was “living with dying.” When I last checked, they were still presenting a person’s with Crohn’s Disease as “dying.”

The practical implication of this kind of advocacy is an increased acceptance in hospice to oversee the deaths of non-terminally ill people in hospice through denial of food, water, and basic medical treatment.

6. Should the federal government get involved? Why or why not?

Cases like Schiavo’s touch on basic constitutional rights, such as the
right to live and the right to due process, and consequently there could very well be a legitimate role for the federal government to play.

There’s a precedent — as a result of the highly publicized deaths of infants with disabilities in the 1980s, the federal government enacted “Baby Doe Legislation,” which would withhold federal funds from hospitals that withhold lifesaving treatment from newborns based on the expectation of disability.

The medical community has to have restrictions on what it may do to people with disabilities — we’ve already seen what some members of that community are willing to do when no restrictions are in place.

7. How should the Terri Schiavo case [have been] resolved?

Terri Schiavo should [have been] able to continue to receive nutrition, and evaluation for other therapy should [have been] initiated.

Further, there should be an investigation into the exhaustion of the funds that were meant for her medical care. After that, we’d like to see a thorough review and revamp of the statutes governing surrogate decision-making in Florida.

8.What do you expect to be the fallout or legacy of the Terri Schiavo case?

A lot depends on how the case turns out and wh
ich voices get heard in the public debate. If bioethicists and “end of life” specialists dominate the debate, the current situation will be framed as a “threat” to the medical establishment and the privacy of family decision-making.
Hopefully, as this article evidences, there will be a broader discussion
in which it can be acknowledged that these are very complex situations that go beyond the medical viewpoint — for example, the alternative viewpoint of the 25 disability groups that have weighed in on this case.

After all, surrogate decision-making is by its nature a disability issue — no policy discussion should move forward without representation from the affected groups in “surrogate” cases.

On the other hand, if the dominant threat continues, the surrounding
issues will continue to be inaccurately portrayed as a battle between
“progressives” and “religious conservatives.” People with disabilities
end up as “collateral damage” in that kind of extension of the
“culture war.”

9.Could the debate over directives and power of attorneys carry over into other areas of medicine, and which?

As the University of Pennsylvania Hospital policies show, there is a
willingness on the part of some players in the health-care arena to limit care to those regarded as having little value. It’s possible bioethicists
could use the Schiavo controversy as a springboard to advance similar
policies that would switch the default standard of care to one of “denial” of care to people under guardianship.

10. How much of a role should or does economics play in the debate over the right to life, right to die issue and advance directives?

If we’re going to start a debate over economics and health care, we
don’t accept singling out people like Terri Schiavo and others as having too little value to justify expenditure of resources. If we’re going to debate economics, let’s look at the whole picture — for example, the role that advertising, marketing and profiteering by the pharmaceutical industry plays in burgeoning health care costs.

On the other hand, it’s clear that for at least some people, the desire to limit care and end the lives of people like Terri Schiavo is an economic issue.

There are probably even more bioethicists and advocates who feel
the same way but aren’t willing to be honest about it. We feel that if
people want to use economic considerations to end the lives of people
like Terri Schiavo, let them be frank about it instead of hiding the
motivation behind terms like “compassion,” dignity,” and “choice.”

By Stephen Drake
Research Analyst for “Not Dead Yet,” a national disabilities group