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Aaron McQ, 50, poses in his Seattle apartment on Jan. 31. McQ had been battling leukemia and a rare form of amyotrophic lateral sclerosis, or ALS, for five years. In November, doctors gave him six months or less to live and confirmed that he qualified to use Washington state鈥檚 aid-in-dying law. (Dan DeLong for KHN)

In the end, it wasn鈥檛 easy for Aaron McQ to decide when to die.

The 50-year-old Seattle man 鈥� a former world traveler, triathlete and cyclist 鈥� 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.

鈥淚t鈥檚 like waking up every morning in quicksand,鈥� McQ said. 鈥淚t鈥檚 terrifying.鈥�

Last fall, McQ decided to use Washington state鈥檚 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.

鈥淗ow does anyone get their head around dying?鈥� he said, sitting in a wheelchair in his Seattle apartment in late January.

Aaron McQ speaks during an interview in his Seattle apartment in January. 鈥淣o one is ever really ready to die,鈥� McQ said. 鈥淭here will always be a reason not to.鈥�(Dan DeLong for KHN)

More than 3,000 people in the U.S. have chosen such deaths since Oregon鈥檚 law was enacted in 1997, according to state reports. Even as similar statutes have expanded to more venues听鈥� including, this year, 听鈥斕齣t has remained controversial.

California鈥檚 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 鈥� including religious groups, disability rights advocates and some doctors 鈥� 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鈥檚 model he once was. But McQ鈥檚 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 鈥渃ertain outcome鈥� now over a prolonged, painful 鈥� and 鈥渦nknowable鈥� 鈥� end.

鈥淚鈥檓 not wanting to die,鈥� he said. 鈥淚鈥檓 very much alive, yet I鈥檓 suffering. And I would rather have it not be a surprise.鈥�

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.

鈥淚 was not relaxed or confident until I had it in my cupboard,鈥� 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鈥檛 ruin anyone鈥檚 holiday. Then his sister and her family came for a visit. Then there was a friend鈥檚 birthday and another friend鈥檚 wedding.

鈥淣o one is ever really ready to die,鈥� McQ said. 鈥淭here will always be a reason not to.鈥�

In late December, a friend picked up Aaron McQ鈥檚 prescription for 100 tablets of the powerful sedative secobarbital. For weeks, the bottle holding the lethal dose sat on a shelf in his kitchen.(Dan DeLong for KHN)

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.

鈥淚t鈥檚 a very complicated decision week to week,鈥� he said. 鈥淗ow do you decide? When do you decide? We don鈥檛 let them make that decision alone.鈥�

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鈥檚 own struggle was worse, said Karen Robinson, McQ鈥檚 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鈥檇 rather die at home.

Aaron McQ and his friend Karen Robinson go boating on Seattle鈥檚 Portage Bay in 2013, before he fell ill with leukemia and a rare form of ALS, or amyotrophic lateral sclerosis.(Courtesy of Karen Robinson)

鈥淭here was part of him that was hoping there were some other alternative,鈥� Robinson said.

McQ considered several dates 鈥� and then changed his mind, partly because of the pressure that such a choice imposed.

鈥淚 don鈥檛 want to talk about it because I don鈥檛 want to feel like, now you gotta,鈥� he said.

Along with the pain, the risk of losing the physical ability to administer the medication himself, a legal requirement, was growing.

鈥淚 talked with him about losing his window of opportunity,鈥� 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 鈥� but not about his impending death.

鈥淭here was a part of him that didn鈥檛 want it to be like this is the day,鈥� she said.

DeRoche arrived exactly at 5:30 p.m., per McQ鈥檚 instructions. At 6 p.m., McQ took anti-nausea medication. Because the lethal drugs are so bitter, there is some chance patients won鈥檛 keep them down.

Four close friends gathered, along with Robinson. They sorted through McQ鈥檚 CDs, trying to find appropriate music.

鈥淗e put on Marianne Faithfull. She鈥檚 amazing, but, it was too much,鈥� Robinson said. 鈥淭hen he put on James Taylor for, like, 15 seconds. It was 鈥榊ou鈥檝e Got a Friend.鈥� I vetoed that. I said, 鈥楢aron, you cannot do that if you want us to hold it together.鈥欌��

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. 鈥淚 think he was just kind of mourning the loss of the life he had expected to live.鈥�

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.

鈥淚 said, as I do to everyone: 鈥業f you take this medication, you鈥檙e going to go to sleep and you are not going to wake up,鈥欌�� she recalled.

McQ drank half the drug mixture, paused and drank water. Then he swallowed the rest.

His friends returned, but remained silent.

鈥淭hey just all gathered around him, each one touching him,鈥� DeRoche said.

Very quickly, just before 7:30 p.m., it was over.

鈥淚t was just like one fluid motion,鈥� DeRoche said. 鈥淗e 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.鈥�

The friends stayed until a funeral home worker arrived.

鈥淥nce we got him into the vehicle, she asked, 鈥榃hat kind of music does he like?鈥欌�� Robinson recalled. 鈥淚t was just such a sweet, human thing for her to say. He was driving away, listening to jazz.鈥�

McQ鈥檚 friends gathered June 30 in Seattle for a 鈥渉appy memories celebration鈥� of his life, Robinson said. She and a few others kayaked out into Lake Washington and left McQ鈥檚 ashes in the water, along with rose petals.

In the months since her friend鈥檚 death, Robinson has reflected on McQ鈥檚 decision to die. It was probably what he expected, she said, but not anything that he desired.

鈥淚t鈥檚 really tough to be alive and then not be alive because of your choice,鈥� she said.

鈥淚f he had his wish, he would have died in his sleep.鈥�听

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