May 2020, ScientificAmerican.com 23THE SCIENCE
OF HEALTHClaudia Wallis is an award-winning science journalist whose
work has appeared in the New York Times, Time, Fortune and the
New Republic. She was science editor at Time and managing editor
of Scientific American Mind.The first time Fred Gillis noticed something was wrong he was
on the ice, holding his hockey stick but somehow unable to shoot
the puck. Was middle age catching up with him, or was it some-
thing more serious? Over the following months Gillis’s arms con-
tinued to weaken. Soon it took two hands to brush his teeth, and
he couldn’t lift a plate to clear the dinner table. Gillis was 52 in
2015 when he got the diagnosis he
dreaded most: amyotrophic lat-
eral sclerosis (ALS), the deadly
motor neuron disorder some-
times called Lou Gehrig’s disease.
“Fred had a co-worker whose hus-
band had ALS,” recalls his widow,
Lana Gregoire. “He wanted to die
from anything but that.”
Both Gillis and Gregoire
worked in Canadian law enforce-
ment. They were pragmatic, real-
istic and familiar with death.
“We used these three words,” she
says. “You have to accept, then
you have to adapt and then you
have to be at peace.” A public ser-
vant to the core, Gillis found
peace by participating in and
raising money for ALS research.
But a new Canadian law gave
him an unexpected opportunity to make his dying days even more
meaningful. In June 2016 Canada became the sixth country in the
world to permit medical assistance in dying (MAID) to end intol-
erable suffering for terminally ill patients, and organ donation
organizations had begun to develop guidelines that would allow
people choosing MAID to also make a plan to donate their organs
for transplant.
Gillis had not been a fan of the euthanasia law, but when he
learned he could combine MAID with a plan to donate organs, “he
was ecstatic,” Gregoire says. “His attitude was, ‘ALS, you can’t take
this away. We’re going to give life to other people.’ ”
Combining euthanasia with organ donation may sound logi-
cal, but it is ethically fraught and not widely done. In 2017 the
Netherlands became the first country to publish clinical guide-
lines for the practice. It established a key ethical principle: the
decision to seek medical assistance in dying must precede and
be separate from the organ donation plan, so that patients make
their fateful choice without feeling pressure to donate. In Can-
ada, each province has its own organ donation organization, and
only some are working with MAID patients. The experience of
three such organizations with the first 30 MAID donors was
reported in a recent issue of the New England Journal of Medi-
cine. In Canada, nearly two thirds of people who qualify for MAID
have active cancer and are therefore ineligible to donate organs;
others may be too elderly. The report looked at 56 patients who
were deemed eligible, 30 of whom went on to donate a total of
74 lifesaving organs.
“The feedback we heard from these patients is that they want
to hear about the opportunity and make that decision themselves,”
says Andrew Healey, chief medical officer at the Trillium Gift of
Life Network in Ontario and a co-author of the report. “People
feel comfortable saying yes, and people feel comfortable saying
no.” In other countries that permit euthanasia, he says, the patient
typically must be the one to
broach the idea of donation.
In the U.S., MAID is permitted
in nine states and Washington,
D.C., but has not been combined
with organ donation. Of course,
anyone with a terminal disease
can designate their organs for
donation, but such plans often
fail because death comes too
slowly, says Joshua Mezrich, a
transplant surgeon at the Univer-
sity of Wisconsin School of Med-
icine and Public Health. Even if
the patient is on life support and
a decision is made to pull the
plug, about 30 percent of the time
the organs become nonviable as
blood pressure drops and circu-
lation grinds to a halt. Mezrich
has written movingly about an
ALS patient named Wayne Bender who fervently wished to donate
a kidney while he was still alive and hoped to donate more organs
after death. In the end, he could do neither. The kidney plan was
vetoed by the hospital’s legal experts out of concern that Bender
might die as a result of donation—an event that would violate the
Dead Donor Rule, a cardinal principle of organ transplantation.
And Bender died too slowly for his organs to be taken after death.
Some experts have proposed a concept called imminent death
donation that would allow the kind of kidney donation Bender had
in mind, but its moral and legal status remain murky. Interestingly,
donation works well after MAID because patients die quickly from
the intravenous euthanasia drugs. Fred Gillis was able to donate
two kidneys, his lungs and his liver when he died in April 2018.
“He knew he was giving life, and that’s all that mattered,” Gregoire
says. She and their three kids were by his side and toasted him that
evening—at a hockey bar. “We knew he would like that.”Illustration by Fatinha Ramos
Euthanasia
and a Final Gift
Should it be easier for the terminally ill
to donate organs?
By Claudia Wallis