Jason Wallace, whose 6-week-old daughter is at the center of a public ethics debate in Canada, talks with Ian Brown of the [Toronto] Globe & Mail.

Kaylee Wallace was born with Joubert syndrome, a rare brain disorder which can account for a wide range of symptoms of unpredictable severity. Wallace had been told that his daughter was going to die, and offered to donate her heart for transplantation into another infant.

But Kaylee did not die when removed from a respirator. Wallace said he was offended when a doctor at Toronto’s Hospital for Sick Children suggested that they stop feeding Kaylee. He said he was also told by hospital staff that the money spent caring for Kaylee “would be better utilized on another child.” An excerpt:

Mr. Wallace has transformed himself into a public hero. In private, though, he sounds like someone else — a father facing the terrifying prospect of a life with a profoundly disabled child.

… He has no doubt about what he would have done if Kaylee had shown signs in utero of being severely compromised. “If we had seen these ultrasounds results, we would not have considered bringing such a child into the world.”

(more…)

An editorial in the Sudbury [Ontario] Star calls for swift action in the case of a woman with ALS and Asperger’s who is living in unhealthy conditions after being denied home care by a government-funded contractor. Minna Mettinen-Kekalainen says she was dropped after she threatened to report nurses who did not follow doctor-prescribed procedures.

An excerpt:

With our aging population, difficult home-care cases are going to come up more often. The health-care system needs to develop effective ways to address them.

Giving up on people cannot be part of the plan.

Earlier post here.

Sarah Wootton (left), writing in the [UK] Guardian, says British philosopher Mary Helen Warnock is wrong to say that people with dementia are a burden to society and have a “duty to die.” She says Baroness Warnock’s position provides a much-needed opportunity for society to debate this taboo subject. An excerpt:

We are all living longer and impressive medical advances mean more of us will be diagnosed with terminal illnesses as well as complex medical conditions. As a consequence, we will need to radically address the way we care for and treat people nearing the end of their lives. Essentially we’re going to have to rethink the end of life.

Sarah Wootton is chief executive for Death in Dying, which advocates for greater personal choice at the end of life.

From the CBS Early Show, [UK] Times, USA Today:

Christopher Anderson, author of an unauthorized biography called “Somewhere in Heaven,” says a pact with his wife kept actor Christopher Reeve alive for ten years after the accident that caused his paralysis. Anderson said Reeve was bent on suicide after being thrown from a horse, but his wife Dana convinced him to keep going.

“She said ‘I still love you.’ Then she made a pact with him. ‘Hold on for two years, if you still feel this way two years from now we will reconsider this question.’ She said that was just a sales ploy,” said Anderson.

… “She wasn’t just resilient,” he said. “She was joyful about life. I think that really came through. She made jokes about being called a saint all the time. She didn’t like it. She said ‘I’m just a woman whose husband fell off a horse and I’m taking care of him and that’s what you do.’”

CBS video is preceded by an advertisement.

Earlier post: Dad was a superman to the end

From the BBC, [UK] Telegraph:

The Welsh parents of a girl with a terminal illness say they will fight a hospital’s decision to withhold life-saving treatment. They say doctors told them their daughter, who is on a ventilator, was at the end of her life and that a judge would have to authorize further care.

Amber Hartland, 6, has Infantile Tay-Sachs, and is almost totally paralyzed and unable to speak.

“We believe it is about money,” said Lesley Hartland, Amber’s mother. “But my father, my husband’s mother and father, they have all paid their taxes and have never used the health service. Everyone is entitled to the health service.”

“Amber has a right to life,” she said.

Hospital sources said cost was not an issue, and that the child was receiving high quality and compassionate care.

Christine Rosen, writing in the Wall Street Journal, memorializes Harriet McBryde Johnson as someone who made society look at disability as a natural part of the human experience. Johnson, she says, demonstrated that disability transcends the convenient categories that often stymie political discourse: secular or religious, liberal or conservative. Johnson held up a mirror to a society whose acceptance of disability wanes as its scientific powers to eliminate disability grow.

As an example, Rosen cites the “rapid near-disappearance of people with Down syndrome.”

As a culture, we have made what Amy Laura Hall of Duke University Divinity School calls a “democratic calculus of worth” regarding Down Syndrome. And that calculus has resulted in a society hostile to people who refuse to make the culturally acceptable choice of ridding themselves of a disabled child before she is born.

… if choice and prevention produce a culture that equates disability with irresponsible parenting decisions, then the homage we pay to accommodation will prove hollow indeed. And as the population ages, and more Americans find themselves living with disabilities, questions about worth at the end of life will become even more pressing. Thanks to people such as Harriet Johnson, we have not yet reached the point where accommodation has given way to neglect or elimination. But we would do well to respect what Ms. Johnson’s own life so ably demonstrated: People with disabilities, she said, “have something the world needs.”

Christine Rosen is senior editor of The New Atlantis: A Journal of Technology & Society, and the author of Preaching Eugenics: Religious Leaders and the American Eugenics Movement.