Quality of Life is Determined by Whom?

A Minnesota Woman's Quality of Life

By Joseph A. D'Agostino

British doctors want to kill children born with spinal muscular atrophy (SMA), even against the wishes of the babies' own parents. When these parents sought to obtain health care for their sick children, these doctors instead took them to court. They argue that SMA-afflicted babies have "no quality of life" and should be denied necessary medical care. In the meantime, here in the states, 34-year-old Lori Martz goes about her life.

Martz has SMA. She also has her own place to live, her own business, and is active in her local church, a local youth ministry, and a prison ministry. The Minnesota woman says, "Most people with SMA are not cognitively impaired. Most of us have average intelligence or above average intelligence." What she doesn't have is complete control over her muscles. "Spinal muscular atrophy, the No. 1 genetic killer of children under the age of two, is a group of inherited and often fatal diseases that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing," says Families of Spinal Muscular Atrophy. The gene for SMA is recessive and must be carried by both parents for a child to inherit the disease, and even then there is only a 25% chance of getting it. About 1 in 6,000 people are born with SMA.

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Although she lives independently, Martz has a service dog and regular visits from people to help her. She must use a wheelchair and though she can eat some food by mouth, she has a feeding tube. During the night, she breathes through a mask connected to a machine "so the machine can breathe for me, and give my body a break," she says.

Martz has not allowed any of this to prevent her from having what even British doctors would likely call a high quality of life. Her business is transcribing documents into Braille, and she is certified by the Library of Congress as a Braille transcriber. "I like foreign languages and codes," says Martz. She attends church regularly and is active in youth and prison ministries, going regularly to a medium-security prison for men in order to perform good works.

Martz pointed out that different people have SMA with different degrees of severity, depending on when their symptoms set in. She has the second-worst kind, type II, which is almost always diagnosed before age 2 because its effects are so noticeable at such an early age.
Doctors in the north of England have a simple solution to Martz' problems. They just might turn off her breathing machine. That's what they wanted to do to an 18-month-old boy. They argued that he was in terrible pain and was certain to die anyway. In the past, eugenics was the justification for such things. Now, it is quality of life.

The boy's parents had to go to court to prevent the doctors from carrying out their deadly prescription. They told the judge that their son responded to his family members and to television. On March 15 the judge ruled in their favor. The boy, identified publicly only as MB, should live. "I positively consider that as his life does still have benefits, and is his life; it should be enabled to continue," the judge wrote.
But it was not as clear-cut a victory as one might have hoped. For he also ruled that the doctors did not have to restart the boy's heart if it stopped. They didn't even have to give him intravenous antibiotics if they were necessary to save his life.

One envisions these doctors, as they make their rounds, stopping by this boy's bed each day not to ponder how to save or improve his life, but to ask themselves, "How can I get rid of him?"

MB may be the harbinger of a deadly trend. Another British couple had to go to court recently to save their daughter with SMA. On the same day the judge ruled in favor of MB's ventilator, the BBC ran a story about a woman with SMA who graduated from Oxford and is now a lawyer who owns her home.

Her younger brother died of SMA at 18 months. "It came as a tremendous shock to my parents because he had been so well, but we comforted ourselves with the fact that the doctors did everything they could to keep him alive," Ruth Everard said. She also noted that medical technology has advanced to the point where, if her brother had been born today, he probably would have lived.

That's why deciding that, separate from the issue of denying health care to babies because you think they will die anyway, denying health care to babies because of their supposed lack of quality of life doesn't make sense. No one can predict with certainty what someone will or will not consider a high quality of life, nor predict what breakthrough might be made that can change the outlook of people with SMA or any other affliction. Martz said that she has personally benefited from advances.

"Computers and technology" have made many disabled people's lives so much easier, she said.
And regarding what severely disabled Englishmen with motor neuron diseases can accomplish, consider Stephen Hawking, who has Lou Gehrig's Disease.

But as Britain advances in medical technology, it slips backwards in medical ethics. The country's socialist health-care system is partly to blame. Here we see illustrated one of the dangers of a single-payer--the current euphemism for socialist--health care system desired by many in the United States: If euthanasia-minded government employees decide your life isn't worth living, where do you turn?
Martz said that when she hears about cases such as MB's or of babies in the Netherlands killed by doctors without their parents' consent, "It makes me scared. I wonder when I'm going to get a letter in the mail or a knock on the door, and hear someone say, 'With all the money you're costing us, it's time for you to go.'" Martz relies on Medicaid for her considerable medical bills.

I suspect Martz differs considerably from the typical Christian volunteer working in prisons. I wonder how much society has saved if just one of the criminals Martz visits is impressed by what she, with all her disadvantages, has made of her life and with her concern for others--impressed enough to reform his life. If he, when released, refrains from preying on others, not to mention avoids reincarceration at the cost of tens of thousands of dollars a year, how much will that save society?

Asked if she would ever avail herself of a right-to-die euthanasia law if her condition degenerated sharply, Martz replied, "My faith is very, very important to me. So I place my life in God's hands. . . . Quality of life is very, very subjective."

Joseph A. D'Agostino is Vice President for Communications at the Population Research Institute.

People like you and me, but they have SMA.