Gary Pearson was 19, snoozing in the back of a van on the way to Coast Guard duty in Seattle, when his life became immensely more complicated...
Gary Pearson was 19, snoozing in the back of a van on the way to Coast Guard duty in Seattle, when his life became immensely more complicated.
The van hit a guardrail, then a tree. Pearson’s neck broke as he was slammed against the driver’s seat.
In the hospital, he was strapped into a huge rotating frame. Two hours staring at the floor, two at the ceiling. A damnable fly lighting over and over on his face. Pearson helpless to swat it.
He contemplated life as a quadriplegic, unable to move anything below his neck. He could breathe, but that was about it. He remembers asking his dad to help him die.
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“Give it a little bit of time, Gary,” his father responded.
Pearson, now 53, is glad he did.
Others facing paralysis, most recently including an Army captain at Seattle’s veterans hospital, have made a different choice.
Different set of rules?
In the disability-rights community, a newly paralyzed person’s decision to live or die is highly controversial.
Despite the now well-established legal and ethical right of any competent adult to refuse or stop medical treatment, some disability-rights advocates favor different rules for disabled patients, particularly those suddenly paralyzed.
Such patients, having absorbed negative attitudes about disability and likely unaware of medical, technological and financial resources, don’t realize they may be able to live satisfying lives, these advocates say.
Other advocates, though, insist that disabled people must be accorded the same rights as fully able patients, and on the same timetable.
They say no one — no matter how well-meaning — can second-guess choices made by a patient facing life without mobility, sex or the ability to breathe without assistance. “You can’t speak for someone until you’ve been in that position,” Pearson says.
Each patient’s case is different, and those on the outside very likely don’t know the details. Two “ventilator-dependent quadriplegic” patients may actually have very different abilities or prospects, medical experts say.
Recently, at Seattle’s Veterans Affairs hospital, Capt. Drew Jensen from the Fort Lewis Stryker Brigade, paralyzed from the neck down by a sniper bullet in Iraq, asked to be taken off a ventilator. He died Sept. 7.
His parents say Jensen, 27, knew what he was doing. He’d planned for such a possibility. In the hospital, he was given information about his condition and the possibilities for the future, and Jensen discussed his choice with his medical team and family.
His case is unusual. Though a significant number of those with severe spinal-cord injuries initially ask to die, say medical and disability experts, most change their minds.
A sudden shock
Statistically, spinal-cord patients are more likely to be young and male — hurt in sports, auto accidents or other trauma. Unlike older patients, who may come to be disabled more gradually, they are suddenly forced to imagine a life with grave limitations.
And, most likely, they’ve internalized stereotypes and negative attitudes about disability, said Diane Coleman, president of the national disability-rights group Not Dead Yet.
They and the medical providers who advise them often have had no exposure to paralyzed people who work as engineers, computer programmers or who operate motorized wheelchairs, she said.
“Two, three months after an injury, you cannot be making an informed decision,” said Stephen Gold, a Philadelphia-area lawyer who represents disabled people. “You just don’t have the experience yet.”
Medical experts at Seattle’s VA Puget Sound Health Care System, citing privacy laws, won’t talk about Jensen’s case.
In general, said Dr. Robert Pearlman, director of the hospital’s ethics program, ethics experts consult on a case when a participant expresses “moral distress” over a contemplated choice, or when a patient’s wishes appear inconsistent or irrational.
“The issue for us would be that whoever is making the choice is making it voluntarily, is adequately informed and has [decision-making] capacity,” Pearlman said. “That means they understand the trade-offs and the implications.”
Quadriplegics who request withdrawal of life-sustaining treatment pose a “particularly difficult situation for everyone,” said Dr. Ellen Fox, director of health-care ethics for the U.S. Department of Veterans Affairs.
That they’re typically younger than most who ask, and not necessarily terminally ill, she said, adds to the “tragic nature of the decision.”
At the Seattle VA hospital, the focus is on helping patients, including those with spinal-cord injuries, become as active and independent as possible, said Dr. Elizabeth Vig, another ethics committee member.
In fact, the VA’s whole culture around disability is “at odds” with the larger society’s, Pearlman said. “Maybe we’re the antidote to this perception that society discriminates.”
The outside world
Still, society and its influences must be considered, counters Coleman of Not Dead Yet. “I’m not wanting to judge [Jensen] or his family,” Coleman said. “I am wanting to judge our society, and I am prepared to question the medical people, and the people surrounding the actual case.”
In any case involving disabled people, there are issues about support, about finances, about the emotions and motives of patients and family that must be scrutinized, she said.
For example, limits on payments for in-home services, pushing some into unwanted nursing-home care, amount to “coercion,” Coleman said. Some in that situation have felt their only choice was to ask that life support end. “That’s not voluntary choice,” she said.
Disability advocates have long been excluded from discussions of medical-ethics policies, Coleman said. “We’ve only recently been yelling so loudly that they’re being forced to talk with us.”
Gary Pearson is glad he delayed his decision to die. He slowly recovered some use of his limbs, though he is still in a wheelchair. He married, had twins, and is just finishing a term as president of the local chapter of Paralyzed Veterans of America.
“I’ve lived such a good life,” he said.
Even so, he supports Jensen’s decision. “I wish he’d given it more time, to see how things shake out,” he said. “But I have to respect what he did. His convictions were strong enough that he believed what he was doing was right.”
Carol M. Ostrom: 206-464-2249 or email@example.com