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Choosing the day that I die

Choosing the day that I die

In the end, it wasn’t easy for Aaron McQ to decide when to die.

The 50-year-old – a former world traveler, triathlete and cyclist – learned he had leukaemia 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 in Seattle, United States, 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,” he said. “It’s terrifying.”

In the fall of 2017, McQ decided to use Washington state’s 2009 Death With Dignity law to end his suffering.

The practice, approved in seven American 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 2018.

More than 3,000 people in the US 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 his legs shook involuntarily beneath his dark jeans and his voice was hoarse with pain during a three-hour effort to tell his story.

In November 2017, 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 2017, 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 2018. Or maybe mid-March. He had wanted to get past Christmas so that 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,” he said. “There will always be a reason not to.”

Aaron McQ, euthanasia, assisted death, aid-in-dying, ALS, Star2.com

In late December 2017, a friend picked up McQ’s prescription for 100 tablets of secobarbital. For weeks, the bottle holding the lethal dose sat on a shelf in his kitchen.

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, California, 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 2018, his own struggle was worse, said Karen Robinson, his healthcare proxy and friend of two decades. He was admitted to home hospice care, but continued to decline.

When a nurse recommended that he 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, 2018. 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 5:30pm, per McQ’s instructions. At 6pm, 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 100mg 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. he 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 7:30pm, 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, 2018, in Seattle for a “happy memories celebration” of his life, Robinson said.

She and a few others kayaked out into Lake Washington and left his 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.” – Kaiser Health News/Tribune News Service

Sunny Side Up: Death is a reminder to live a life of purpose

Sunny Side Up: Death is a reminder to live a life of purpose

Sunny Side Up

I recently took part in a team-building event that included a session at which we were asked to answer a life question: “If you could know something today about your future, what would it be?”

Seated in pairs, each person had one minute in which to respond to the questions presented. This seemed a particularly tough one to process in such a short time.

My partner kindly invited me to go first and, after giving the question some brief thought, I replied, “I’d like to know when I’ll die – I think I’d find it reassuring.” Understandably, I was asked to elaborate on why I’d want an answer to a question many people prefer to avoid.

“Well, if I get to last until I’m 70 or 80, then I can pour all my energies into living a meaningful life without needing to wonder what’s around the corner. But if I’m to die within the next week or so, I can give up my gym membership and spend the savings on Famous Amos cookies and Baskin Robbins ice-cream.”

The question – and my frivolous response – unexpectedly triggered a memory of mine from the time that my mother was dying. She was a woman who was both mentally determined and physically strong. In the year before her death, she ran a half-marathon for charity without any training (she had never run before) and would often put me to shame by matching – and sometimes exceeding – my weightlifting exercises.

“Mind over matter” was one of her favourite and frequent sayings.

As readers who have lost loved ones will appreciate, it was tough for me to watch an incredibly strong, defiant woman losing both her mental and physical presence over the course of her short illness. She wanted to stay home, and so my sisters, my dad and I saw the whole process unfold over a matter of weeks.

When she found out about her illness, she and I had some meaningful chats while she was still well enough. During one conversation she said, “Life isn’t something you really think about until it’s almost gone. It’s the hardest thing to understand, the toughest thing to let go, and the one thing we forget to be thankful for.”

At any other time, her words might have seemed to be merely a nice expression; however, in this context, they carried much more weight than usual. In these final conversations, I paid closer attention than usual to her words, not knowing which conversation would be the last one.

Our chat reminded me of a story often told by students of the late Buddhist teacher Ajahn Chah. Considered to be an enlightened monk, he was once asked what he understood about the nature of life. He replied, “You see this glass? For me this glass is already broken. I enjoy it, I drink out of it. It holds the water admirably and, when the light hits it just right, it gives beautiful reflections. When I hit it with my finger, it gives a lovely sound.

“But when I put this glass on the shelf and the wind knocks it over, or my elbow brushes it and it falls to the ground and shatters, I say, ‘Of course’. When I understand that the glass is already broken, every moment with it is precious.”

When my mum died, I was naturally devastated, but I was also grateful for three things. First, that her suffering had ended; second, that I was blessed to have had her in my life at all (feeling that I’d gained much more from her in life than I’d lost in her death); and third, that I’d been reminded that life is a privilege to be cherished rather than a right to be expected.

In the following weeks, I recalled how shallow her breathing had become towards the end, and so I made sure to take a few deep, grateful breaths before I went to sleep each night, and silently thanked her for all that she’d given me. My mother was no saint but, like most parents, she did her best and got it right more times than not. It’s a shame many of us don’t realise this earlier about our loved ones.

Like Ajahn Chah’s glass, our lives are already broken, which is to say that they are bound to end. With that in mind, if I could go back and answer that question that was asked at the team-building event, I’d respond differently.

I’d like to know that my future self was satisfied with his journey so far, knowing that he’d made the most of the opportunity to live a life of purpose, fully appreciating the people in his life and the countless blessings he continues to receive. Reassuringly, as I finish that last sentence, I can almost hear my mother asking me, “And where do you think your future self begins?”


Sunny Side Up columnist Sandy Clarke has long held an interest in emotions, mental health, mindfulness and meditation. He believes the more we understand ourselves and each other, the better societies we can create. If you have any questions or comments, e-mail star2@thestar.com.my.

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