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Feature Story: Ragged Edge July/August1999 ABOUT US | SUBSCRIBE | CURRENT ISSUE | OUR LAST ISSUE | LINKS | E-MAIL EDITOR | HOME July/August 1999 The Trigger, the Pen and the Switch:Was Georgette Smith's death too quick? Should the law be changed?by Lisa SmallLisa Small is a public interest attorney in private practice in the Washington, DC area.EDITOR's NOTE -- On Aug. 18 Shirley Egan was acquitted by an Orlando, FL jury of attempted murder when she shot Georgette Smith. More from our D.R. Nation feature. Disability issues permeate the story of Georgette Smith.In January, her 68-year-old mother, Shirley Egan, moved in with Smith in Orlando, Florida, having left another daughter's home in Fort Myers.Smith soon began planning to move her mother to a nursing home. On March 8, she walked into her mother's bedroom to fetch some paperwork regarding her upcoming transfer into an assisted- care facility. It was the last walk she ever took.Egan claims she shot her daughter by accident, intending only to scare her into dropping the nursing-home plan.Nothing indicates that either of her daughters knew about in-home care resources, or adult day care, or respite assistance, or any other support program. A mother shifted from home to home to nursing home in the span of three months: disability advocates reading between the lines can draw their own conclusions.Smith was rushed to the hospital and Egan was taken to jail to be charged with attempted murder. On the ride to jail, Egan babbled to police of her terror of being taken to "the crazy house" -- her image of the assisted-living facility her daughter had chosen.The attack made Smith a C2 quad: "All I can do is wink my eyes and wiggle my nose, wiggle my tongue." She could speak but not swallow or breathe. She depended on a gastrointestinal tube for food and on a ventilator for air.In order to get the ventilator disconnected, Smith had to file suit against the hospital. Her petition included her medical records, a psychological evaluation, and a transcript of a bedside deposition. Smith's distress is palpable throughout.She chokes up and becomes incoherent with grief. "This is not actual -- God, don't leave me this way. I am not -- I feel like I'm part -- I can't live like this." The ventilator and the tracheotomy add to her difficulties in speaking.Smith began asking to die in April, less than a month after the shooting. She clung to that resolution, though her physician testified he had tried to emphasize the positive potential of life after quadriplegia. Her determination convinced the judge, who added a two-hour personal visit to the written record before making his decision.The judge scheduled an emergency hearing on Wednesday, met with her at the hospital Friday, and issued his order the following Tuesday that she could have the ventilator disconnected any time after 5 p.m. the following day, if she would give a statement regarding the criminal case against her mother first.Georgette Smith died at 5:46 p.m. -- a week to the day after the first hearing.Was Smith's death an act of self-determination by a fully informed and competent individual, appropriately facilitated by the courts? Or was it an unseemly race to the grave, sped by a system which devalues the lives of people with disabilities so much that choosing death seems a "natural" consequence of paralysis? .A non-disabled friend of mine is strident about the case: "I tell you now, I don't want to live that way either. You are all my witnesses: No! Unplug me -- or don't plug me in in the first place." .If she puts that in writing, a court may well honor it. But how informed is her point of view? She has never lived a single day as a quadriplegic. She has never lived with a quadriplegic. She cannot today know or image her state of mind if she becomes a quad tomorrow.Yet prejudice against disability is so ingrained in our society that few courts would consider a declaration like hers made prior to a catastrophic injury to be an incompetent and uninformed act.Smith did not have an advance directive. Since she was conscious, she was able to clearly express her preference. And that preference was for death rather than life with a severe disability.The court honored her wishes.It's true that Smith wasn't fully informed about life with a disability -- she'd chosen not to meet with advocacy groups. And as to understanding her own state of mind, the experience of nearly all quadriplegics is that the first months after the injury are not a reliable test of how they will feel at the end of one year, or of two.It's my perspective as a person with a disability that makes me want to give non-disabled people who have executed advance directives a chance to change their minds. That perspective makes me wring my hands over Georgette Smith -- who was fully informed about the consequences of turning off the ventilator, but apparently chose not to be informed about the possibilities of life with the ventilator on.Diane Coleman of Not Dead Yet notes that this isn't uncommon: "It's only through fortuity, more or less," she says, that people learn about the disability lifestyle -- "if there are [well-informed] individuals in a person's life -- or a really astute psychologist to influence things to go the other way." .Though her doctor testified that he told her about the positive aspects of life after injury, Smith chose to reject what he told her, and chose not to permit people with disabilities from organized disability groups to tell her anything more.Certainly a person has the right to refuse treatment. But do you also have the right to refuse to learn about what treatments and accommodations are available? Can you choose to not be informed to the point of being a danger to yourself? .On the other hand, shouldn't you be able to elect not to be wooed or harangued by people opposed to your initial decision? I have little enthusiasm for the forced "counseling" inflicted on women at abortion clinics in some states; how can I take the position that Georgette Smith should have been forced to listen to what she didn't want to hear? .Flawed decisions?.The first part of medical decision-making is to be "fully informed." But what that means -- and how far the law (or an individual judge) should go to assure or even compel the informative process -- is a tough call. To single out people with disabilities for special procedures in these matters is patronizing, perhaps even a civil rights violation. The need to counterbalance the traditional preference for hustling people with disabilities out of life in the guise (or even with the most sincere intent) of mercy has to be met some way other than making us legal infants.The second part of medical decision-making is to be "competent to decide." "Competent," though, is as amorphous a concept as "informed." A look at most state laws shows us that the level of competence required to sign a contract is one thing; the level of competence required to sign a will is another, much lesser thing. This lesser standard for "competence" in will-writing has arisen from the reality that many people delay making wills until their age and health have left them too impaired to achieve the first standard. In preference to letting a person die with no will at all, laws call for mere lucidity: some demonstration that a person understands they have property and that they are capable of communicating where they want that property to go.The standard for refusing life support is generally closer to the standard for making a will.Certainly Smith was lucid. She expressed her will clearly, cogently, and often.But wasn't her will impaired by her levels of physical and emotional pain? By the lack of time she'd had to adjust to the traumatic change in her life? .On the other hand, do we as people with disabilities dare create a presumption in the law that pain or depression or medication are in themselves enough to render one incompetent to make major life decisions -- especially decisions which will lead to the end of pain?.One of Smith's daughters spoke tearfully in a heart-wrenching press conference: "If she was not competent, it would be better, because she wouldn't know what she was going through. Right now, she knows exactly what she's going through and she feels the pain." .The judge received Smith's petition, met with her, read her records, and gave her the court order she'd requested -- less than a week from the day he'd held the first hearing.She could have the ventilator turned off the very next day -- so long as she provided prosecutors with a deposition they could use in the criminal case against her mother first.Representatives of Not Dead Yet say it takes six months to two years to stabilize emotionally from an injury as catastrophic as Smith's. With the court's permission, Smith died only 72 days after being injured.If we see the judge as someone defending her right to choose her own destiny, his speed is admirable. But if we see him as someone in the grip of the societal assumption that life with severe disability is not worth living, his speed is shocking. He thought it was important to keep her alive to make the video deposition that will be used to put her mother in prison, but he didn't keep her alive to meet with other quads, to pass through the first trauma of catastrophic injury, to maybe see her own grandchildren born some day.Did her life only have value to him so long as she could provide evidence of a crime? Or was he protecting her civil rights to liberty and self-determination, and her right to freely associate -- or not -- with disability advocates as she chose? .More than 25 years ago, Dax Cowart was in a fire so severe that he lost his sight, all his fingers, and much of his skin. The pain was extraordinary: "Every second of that pain was an eternity." .He requested death over and over, and was denied each time. Unlike most long-term survivors, Cowart still believes that he should have been granted his requests when he made them.He works now as a patient's rights attorney, lecturing and litigating the right of people with disabilities to choose their own level of care and take their own risks.Cowart says, "As long as I'm lucid and can demonstrate that -- and 'lucid' doesn't mean as competent as I might be without medication or pain -- I should be allowed to make my own choices."I have the same right to choose as anyone outside hospital walls. If someone wants to go surf the pipeline outside Hawaii -- very dangerous -- no one is going to stop them and make them prove their competence first."Though still dismayed over Smith's choice, in the course of writing this article I've come around to a view closer to Cowart's. Yes, it would have been better if Smith had allowed herself more time and more information before she made her fatal choice -- but yes, it was also her right to refuse to take the time; to refuse to accept the information.It is true that generally courts and legislatures and the non-disabled public assume that life with a disability is so dreadful that anyone rejecting it should be sped along the way. And a case can be made for saying that this historic eugenic tendency justifies special protections for people with disabilities.But I believe that the inherent patronization of special legal protections which presume a disabled person's incompetence to make these decisions are not to our advantage, in either the long or the short run.Smith was allowed to exercise the same right to self-determination as any other competent U.S. citizen. Although I wish she had been more stable, out of the first stages of shock and denial, she met the current standard of competence. I think there are good reasons for us as persons with disabilities not to want to see that standard raised."It's part of liberty," Cowart said. "Freedom isn't just freedom to make the right choice all the time, it's the freedom to sometimes make the choice which might not be correct." If we have the right to choose, we also have the right to choose wrongly. And we need to be very careful that our urge to protect the life of anyone with a disability doesn't put us in the position of giving away our liberties.There are more hands in this death than the hands on the trigger, the pen, and the switch. Society as a whole has a hand in creating a world where death seems better than life with a disability.There are valid reasons to fear some nursing homes as much as Shirley Egan did. Georgette Smith herself, once disabled, matched her mother's fear. And it is lack of resources as well as ignorance of resources that can make it unbearably difficult for some families to keep a disabled relative at home.My first reaction to this tragedy was to look at how the law could be changed to make deaths like Smith's less likely and less swift -- to legislate some "protection" against rocket dockets where judges speed people still in shock to their deaths.It's a reflex for me as a lawyer to want to legislate problems out of existence, but this time I think it's a bad one. Looking to the law for a fix in this situation is more likely to endanger our progress than protect our lives. The forces that combined to make Smith willing and able to die have to be fought first in the courts of public opinion, leaving the law as a last and perilous resort.A natural consequence?Sometimes death is not an unavoidable consequence of the initial injury, but results from a voluntary act by the victim -- in this case, requesting the ventilator be disconnected. There are two views of how this affects criminal charges against the perpetrator. One camp holds that the voluntary act of the victim cannot be added to the criminal's responsibility. The other is that choosing to end one's life is such a "natural" consequence of paralysis that it should be considered similar to pneumonia or any other medical complication, making the accused criminally responsible for murder. In taking that position regarding Smith's death, Florida's attorney essentially said that quadriplegia is the equivalent of death -- a view that the disability community cannot afford to let go unchallenged.'Quality of life' depends on who you ask, study says When asked to rate the quality of life for various hypothetical conditions of extremely low birth-weight children, health care professionals tend to predict worse outcomes and a lower quality of life than did a newborn's parents. Adolescents who'd been low-birth-weight babies also rated their quality of life higher than did "professionals." That's the conclusion of a study reported in the June 2 Journal of the American Medical Association.The full text of the article is available online at http://www.ama-assn.org/special/womh/library/readroom/vol_281c/joc81714.htm |
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