Dear Colleague:
British doctors try to kill a disabled baby against his parents' wishes.
Perhaps they should meet Lori Martz.
Steven W. Mosher
President
PRI Weekly Briefing
28 March 2006
Vol. 8 / No. 13
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.
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.
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