Diane Coleman and Steve Gold in Seattle Times Story

Things are a little behind here, in terms of posting and commenting on news items.

On Sunday, September 16th, Diane Coleman and Steve Gold were quoted in a Seattle Times article titled “Some favor slower right to die for paralyzed.” Not the best title, but a predictable one. An alternative and accurate title might have read “Some want more time, deliberation and information to insure ventilator users who end lives through treatment refusal are truly informed decisions.” But that’s a little long and complicated when you can use a simple piece of jargon like “right to die” as shorthand.

The article resulted from the highly publicized decision Capt. Drew Jensen to end his life on a ventilator after a bullet wound inflicted in Iraq resulted in his total paralysis from the neck down.

Here are some of the comments from Gold and Coleman:

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.”

More from Diane here:

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.”

This article skimmed the surface of a difficult issue with a complex history – a history that has often been distorted. For more information, please check out the following:

  • Unanswered Questions by Mary Johnson – discussion of the cases of Kenneth Bergstedt and Larry McAfee, both of whom were quadriplegic and dependent on ventilators. Both were at the center of battles about their right to have their vents shut off.
  • A bioethicist offers an apology by Howard Brody – discusses his rethinking of the criticisms of disability activists during a prominent vent-removal case involving David Rivlin in Michigan.