[Right_to_die] ALS victim wants choice in dying

[Derek Humphry (ERGO EFN)]

No option for dying with dignity
By Joan Ryan

Laurie Falco wants to die soon. She isn't sure exactly when, but soon. She
underlined the word on the sheet of notebook paper on which she answered my
questions recently. Her writing is light and spidery, making it difficult to
read. But it is her only means of communicating. Amyotrophic lateral
sclerosis, ALS, has taken her voice, just as it has taken her ability to
swallow food, to walk more than a few feet, to breathe on her own at night.

She doesn't fear death. She fears being trapped inside a silent, useless
shell that was once her body. She knows, no matter what her church friends
say, that life can be worse than death. Falco watched her mother descend
into the tumultuous fog of Alzheimer's, slowly losing her mind, her bowel
control, her ability to tame her abusive language and violent outbursts.

"I feel I have to make my own way with Jehovah,'' she wrote in her notebook
Thursday morning.

Falco, 58, sat on the couch in her sunny Santa Rosa, Calif., home, where she
has lived for more than 30 years. She ran Laurie's Dog Grooming out of this
house. She and her four children kept a menagerie of pets -- from snakes to
ponies to goats -- on the sprawling property. Her youngest daughter,
24-year-old Mia, sat cross-legged on the floor by her feet, jumping up to
retrieve her mother's glasses from the bedroom when Falco pointed at her
eyes. Mia and her 22-year-old brother, Mike, moved back home over the winter
to care for their mother, who has been battling the disease for 18 months.

"I prayed to Jehovah,'' Falco continued in her slow hand, "and came back
with the idea to get ahold of a doctor and hospice to get the medication.'"

But assisted suicide is illegal in California, as it is in every state
except Oregon. Falco cannot be prescribed a lethal dose of medication to
bring about her own death. She could order the medicine over the Internet,
but she would need her children's help to do so, putting them at risk of
prosecution. She could lie to her doctor about needing stronger sleeping
pills, and then hoard them until she has enough, but she won't lie.

So when she decides the time is right -- soon -- she will have to end her
life by starving because it is one of the few legal options open to her. We
live in a society that understands the compassion in ending a beloved pet's
painful life through lethal overdose, but still can't see why people should
be afforded the same loving option.

Hospice can give Falco enough morphine or barbiturates to keep her
comfortable as she starves, but death can take days. It will be serene and
painless, though not as dignified and controlled as she would wish. If Falco
lived in Oregon, she could fill out a request for physician-assisted death.
Two doctors would verify her terminal status and her competency. Then she
would make a second written request 15 days after the first, both signed by
two witnesses.

Then at the time she chose, in her own bed surrounded by her family and her
two adoring dogs, Falco could consume a lethal dose of prescription
medicine. She would slip away in 15 or 20 minutes.

Oregon voters passed the Death with Dignity Act in 1994 and again in 1997,
triumphing over those who warned of state-sanctioned killings of vulnerable
elders at the hands of their heirs and of severely disabled people whose
care had become too burdensome. But after nearly seven years, Oregon has
seen none of the predicted abuses.

Still, U.S. Attorney General John Ashcroft challenged the law in 2001,
unilaterally deciding it violated federal policy -- even though he has no
problem with allowing states to decide for themselves whether to put
criminals to death. Ashcroft said any doctor who assisted in a patient's
death would be prosecuted. A U.S. district court ruled that the attorney
general didn't have the authority to issue the directive. Ashcroft then took
the case to the Ninth Circuit U.S. Court of Appeals, where it has sat for
almost a year.

"(If the Oregon law is struck down), we lose the careful, open discussion,
the collegial support, the state oversight,'' says Barbara Coombs Lee, the
president and CEO of Compassion in Dying, a national organization that
provides counseling to terminally ill people about end-of-life choices. "We
lose the assurance that it's a safe and open practice. We'd have to go back
underground, like every other state.''

Falco's children called Compassion in Dying last spring at their mother's
request. A Bay Area caseworker has been counseling the family in thinking
through the decision and considering the options.

Not everyone is comfortable with Falco's plan. Some say "it is shocking and
not normal,'' Mia said. "But this is not a normal situation. The only thing
that gives Mom relief is knowing she won't end her life on a respirator in a
hospital bed.''

Falco listened as her daughter spoke, then picked up the pen again.

"If I hadn't heard about Compassion (in Dying), I would be crying because
without this you have no hope,'' she wrote.

What Falco wants isn't immoral or unreasonable. People get to make choices
in everything from how to give birth to whether to have a cosmetic surgeon
slice them up in the name of beauty. Falco simply wants the freedom to
decide for herself when her life is no longer worth living. She wants her
exit, unlike her horrible disease, to be on her own terms. She wants, as
much as possible, to make her death a loving and powerful experience for her
and her family instead of a lingering, wrenching disintegration.

"I think she'll decide the time is right when she's ready to say goodbye to
her family,'' said her eldest daughter, Stacie Lautrup, whom I reached by
phone in Sacramento, where she lives with her husband and children. "But at
this point, I can still think of lots of things she can cackle about. She
still loves being around everybody.''

Falco knows her family will let her go when she asks. She won't ask today
and probably not tomorrow. But, as she wrote in her notebook Thursday, soon,
before ALS takes away everything but her beating heart.
===============

Joan Ryan is a columnist for the San Francisco Chronicle. Send comments to
her in care of this newspaper or send her e-mail at
joanryan at sfchronicle.com ----------------end