JoNel Aleccia
AUGUST 14, 2018
In the
end, it wasn’t easy for Aaron McQ to decide when to die.
The
50-year-old Seattle man — a former world traveler, triathlete and cyclist —
learned he had leukemia five years ago, followed by an even grimmer diagnosis
in 2016: a rare form of amyotrophic lateral sclerosis, or ALS.
An
interior and urban designer who legally changed his given name, McQ had been in
pain and physical decline for years. Then the disease threatened to shut down
his ability to swallow and breathe.
“It’s
like waking up every morning in quicksand,” McQ said. “It’s terrifying.”
Last
fall, McQ decided to use Washington state’s 2009 Death With Dignity law to end
his suffering. The practice, approved in seven states and the District of
Columbia, allows people with a projected six months or less to live to obtain
lethal drugs to end their lives.
Although
the option was legal, actually carrying it out was difficult for McQ, who
agreed to discuss his deliberations with Kaiser Health News. He said he hoped
to shed light on an often secretive and misunderstood practice.
“How
does anyone get their head around dying?” he said, sitting in a wheelchair in
his Seattle apartment in late January.
More
than 3,000 people in the U.S. have chosen such deaths since Oregon’s law was
enacted in 1997, according to state reports. Even as similar statutes have
expanded to more venues — including, this year, Hawaii — it
has remained controversial.
California’s
End of Life Option Act, which took effect in 2016, was suspended for three
weeks this spring after a court challenge, leaving hundreds of dying
patients briefly in limbo.
Supporters
say the practice gives patients control over their own fate in the face of a
terminal illness. Detractors — including religious groups, disability rights
advocates and some doctors —
argue that such laws could put pressure on vulnerable people and that proper
palliative care can ease end-of-life suffering.
Thin
and wan, with silver hair and piercing blue eyes, McQ still could have passed
for the photographer’s model he once was. But McQ’s legs shook involuntarily
beneath his dark jeans and his voice was hoarse with pain during a three-hour
effort to tell his story.
Last
November, doctors told McQ he had six months or less to live. The choice, he
said, became not death over a healthy life, but a “certain outcome” now over a
prolonged, painful — and “unknowable” — end.
“I’m
not wanting to die,” he said. “I’m very much alive, yet I’m suffering. And I
would rather have it not be a surprise.”
In late
December, a friend picked up a prescription for 100 tablets of the powerful
sedative secobarbital. For weeks, the bottle holding the lethal dose sat on a
shelf in his kitchen.
“I was
not relaxed or confident until I had it in my cupboard,” McQ said.
At the
time, he intended to take the drug in late February. Or maybe mid-March. He had
wanted to get past Christmas, so he didn’t ruin anyone’s holiday. Then his
sister and her family came for a visit. Then there was a friend’s birthday and
another friend’s wedding.
“No one
is ever really ready to die,” McQ said. “There will always be a reason not to.”
Many
people who opt for medical aid-in-dying are so sick that they take the drugs as
soon as they can, impatiently enduring state-mandated waiting periods to obtain
the prescriptions
Data from
Oregon show that the median time from first request to death is 48 days, or
about seven weeks. But it has ranged from two weeks to more than 2.7 years,
records show.
Neurodegenerative
diseases like ALS are particularly difficult, said Dr. Lonny Shavelson, a
Berkeley, Calif., physician who has supervised nearly 90 aid-in-dying deaths in
that state and advised more than 600 patients since 2016.
“It’s a
very complicated decision week to week,” he said. “How do you decide? When do
you decide? We don’t let them make that decision alone.”
Philosophically,
McQ had been a supporter of aid-in-dying for years. He was the final caregiver
for his grandmother, Milly, who he said begged for death to end pain at the end
of her life.
By late
spring, McQ’s own struggle was worse, said Karen Robinson, McQ’s health care
proxy and friend of two decades. He was admitted to home hospice care, but
continued to decline. When a nurse recommended that McQ transfer to a hospice
facility to control his growing pain, he decided he’d rather die at home.
“There
was part of him that was hoping there were some other alternative,” Robinson
said.
McQ
considered several dates — and then changed his mind, partly because of the
pressure that such a choice imposed.
“I
don’t want to talk about it because I don’t want to feel like, now you gotta,”
he said.
Along
with the pain, the risk of losing the physical ability to administer the
medication himself, a legal requirement, was growing.
“I
talked with him about losing his window of opportunity,” said Gretchen DeRoche,
a volunteer with the group End of Life Washington, who said she has supervised
hundreds of aid-in-dying deaths.
Finally,
McQ chose the day: April 10. Robinson came over early in the afternoon, as she
had often done, to drink coffee and talk — but not about his impending death.
“There
was a part of him that didn’t want it to be like this is the day,”
she said.
DeRoche
arrived exactly at 5:30 p.m., per McQ’s instructions. At 6 p.m., McQ took
anti-nausea medication. Because the lethal drugs are so bitter, there is some
chance patients won’t keep them down.
Four
close friends gathered, along with Robinson. They sorted through McQ’s CDs,
trying to find appropriate music.
“He put
on Marianne Faithfull. She’s amazing, but, it was too much,” Robinson said.
“Then he put on James Taylor for, like, 15 seconds. It was ‘You’ve Got a
Friend.’ I vetoed that. I said, ‘Aaron, you cannot do that if you want us to
hold it together.’”
DeRoche
went into a bedroom to open the 100 capsules of 100-milligram secobarbital, one
at a time, a tedious process. Then she mixed the drug with coconut water and
some vodka.
Just
then, McQ started to cry, DeRoche said. “I think he was just kind of mourning
the loss of the life he had expected to live.”
After
that, he said he was ready. McQ asked everyone but DeRoche to leave the room.
She told him he could still change his mind.
“I
said, as I do to everyone: ‘If you take this medication, you’re going to go to
sleep and you are not going to wake up,’” she recalled.
McQ
drank half the drug mixture, paused and drank water. Then he swallowed the
rest.
His
friends returned, but remained silent.
“They
just all gathered around him, each one touching him,” DeRoche said.
Very
quickly, just before 7:30 p.m., it was over.
“It was
just like one fluid motion,” DeRoche said. “He drank the medication, he went to
sleep and he died in six minutes. I think we were all a little surprised he was
gone that fast.”
The
friends stayed until a funeral home worker arrived.
“Once
we got him into the vehicle, she asked, ‘What kind of music does he like?’”
Robinson recalled. “It was just such a sweet, human thing for her to say. He
was driving away, listening to jazz.”
McQ’s
friends gathered June 30 in Seattle for a “happy memories celebration” of his
life, Robinson said. She and a few others kayaked out into Lake Washington and
left McQ’s ashes in the water, along with rose petals.
In the
months since her friend’s death, Robinson has reflected on McQ’s decision to
die. It was probably what he expected, she said, but not anything that he
desired.
“It’s
really tough to be alive and then not be alive because of your choice,” she
said.
“If he
had his wish, he would have died in his sleep.”
JoNel
Aleccia: jaleccia@kff.org,
@JoNel_Aleccia
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