The ALS Patient Who Chose His Death

 

According to the Tampa Bay Times, Aaron McQ did not want to die. He knew, however, with his disease he would inevitably have to. The 50-year-old man from Seattle has formerly traveled the world, been a cyclist and a triathlete. In 2016, the once healthy and active man was told he had amyotrophic lateral sclerosis (ALS).

ALS Explained

Amyotrophic lateral sclerosis is a progressive neurological condition that kills nerve cells in the brain stem, spinal cord, and brain. As a result, muscles weaken, causing loss of voluntary movement and control. The condition is usually fatal as patients eventually lose the ability to breathe due to the decline of their chest muscles. There are two types of ALS: sporadic and familial. Sporadic ALS is much more common and makes up for 90-95% of ALS cases. Familial ALS is an inherited type of the disease. All races and ethnicities are affected by ALS similarly, but men tend to get it more often than women. The illness is often frustrating and devastating for those who have it and the loved ones of those affected. To learn more about this disease, click here.

Aaron McQ’s Story

By the time Aaron McQ received his ALS diagnosis, he had already been struggling with the symptoms. His condition then progressed and threatened his ability to breathe and swallow.

McQ explained how hard it was to live with this reality. “It’s like waking up every morning in quicksand,” said McQ. “It’s terrifying.”

Last fall, Aaron McQ decided that he would utilize Washington’s Death With Dignity law to bring his suffering to a close. He wanted to die on his own terms instead of suffering through the excruciating process. Similar practices have become legal in seven states as well as the District of Columbia. Essentially, the states all allow those with a six month or less end-of-life projection to take lethal drugs in order to end their lives on their own terms.

At the same time, McQ struggled with this option. After all, “How does anyone get their head around dying?” he questioned in late January.

A Popular and Controversial Option

Numbers-wise, an upwards of 3,000 people in the United States have chosen similarly as McQ to die through this process ever since the first law was enacted in Oregon in 1997. Similar laws have been enacted in other states with Hawaii being the most recent state to join the ranks. But the law is nothing less than incredibly controversial.

For example, California’s similar law, the End of Life Option Act, was enacted in 2016, only to be suspended this year for three weeks. This left hundreds of patients who had planned to use the Act in a limbo.

Those in support of the process believe that patients should be in control of their own path and fate while living with a terminal diagnosis. Critics, including disability rights advocates, religious groups, and some doctors believe that such laws put unnecessary pressure on those faced with the option.

Freedom Over Fate

The decision was not an easy one for McQ, but ultimately he did want to have freedom over his fate.

“I’m not wanting to die,” said McQ. “I’m very much alive, yet I’m suffering. And I would rather have it not be a surprise.”

A friend of his picked up his prescription for a lethal dose of sedative secobarbital in late December, but the prescription sat on his kitchen shelf for a while. McQ decided he wanted to take it in February, or perhaps March. He wanted the Holidays to be over with, so as not to ruin anyone’s Holiday spirit, but then he wanted to wait for a family visit to see his sister, a friend’s birthday, another friends’ wedding.

At the end of this all, McQ realized that “No one is ever really ready to die. There will always be a reason not to.”

A physician from Berkeley who has supervised almost 90 aid-in-dying deaths and is heavily involved in advising patients in these situations, Dr. Lonny Shavelson, explains that ALS and similar neurodegenerative conditions are particularly difficult to assess.

“It’s a very complicated decision week to week,” said Dr. Shavelson. “How do you decide? When do you decide? We don’t let them make that decision alone.”

By the end of spring, Aaron McQ’s condition was worsening. Though nurses recommended that McQ stay in hospice care towards the end of his fight, he chose to go back home to die. McQ went back and forth on the day he would take the fatal dose, as it is the hardest decision he has ever had to face.

As his condition worsened, however, his ability to administer the lethal medication to himself also diminished. This was a legal requirement by the law.

“I talked with him about losing his window of opportunity,” said Gretchen DeRoche, who is part of the group End of Life Washington. DeRoche herself has supervised hundreds of similar aid-in-dying deaths.

So McQ finally settled on a day. On April 10, he decided, he would take the medication and leave the world he loved.

April 10

On the predestined day, DeRoche showed up at 5:30 PM, per McQ’s request. 30 minutes later, 6 PM, McQ took some anti-nausea medication in order to make sure the lethal drugs would be kept down. Four of his close friends were nearby, as well as friend and healthcare proxy Karen Robinson. His support group filtered through McQ’s CD collection to find music to ease him into his peaceful death.

“He put on Marianne Faithfull. She’s amazing, but, it was too much,” said Robinson. “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 then proceeded by opening the medication and mixing the drug with coconut water and vodka. At this point, McQ began to cry. “I think he was just kind of mourning the loss of the life he had expected to live,” said DeRoche.

McQ decided that he was ready, and everyone was asked to leave the room except DeRoche. She explained to McQ that he still had time to 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 recounted.

But McQ went through with it. He drank half of the mixture, then took a sip of water, and finished the rest of the medicated mixture. His friends then re-entered the room. “They just all gathered around him, each one touching him,” recalls DeRoche.

It was over before 7:30 PM. Friends of McQ waited for a funeral worker to come by, and they played music McQ liked, jazz, on his ride in the vehicle.

Months after McQ’s passing, Robinson reflected on the decision. “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.”

To learn more about McQ’s end-of-life journey, click here.


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