A California doctor who has helped dozens of terminally ill people end their lives at a time of their own choosing has said decades of experience in the US showed that there was no danger of a “slippery slope” if assisted dying legislation was robustly framed.
Dr Catherine Sonquist Forest, a family physician based in Santa Cruz, said the proposed legislation due to be voted on by MPs at Westminster this week was “impressive”.
Since California legalised assisted dying eight years ago, there had been no broadening of the criteria, and in neighbouring Oregon, there had been no change to the law in nearly three decades. “I don’t see change coming any time soon,” Forest told the Observer.
Forest has trained thousands of doctors to help terminally ill people to die, and has been personally involved in dozens of assisted deaths. All were “profound experiences” and a privilege, she said.
The option of assisted dying gave people a degree of control over their own body, she said: “The decision is theirs alone – not their family’s, not their doctor’s and certainly not the government’s.
“This is their agency. As in any situation, contingency planning gives most people great peace of mind,” she said.
California’s End of Life Option Act allows terminally ill adults to request medication from their doctor that will end their life. But they must have a life-limiting illness with a prognosis of six months or less, plus mental capacity, to be eligible for what is termed aid in dying. Medication must be self-administered.
“We prescribe a combination of drugs that cause someone to lose consciousness within between 20 minutes and two hours. The person’s heart stops about two hours after taking the medication and they die,” said Forest. “It’s like a deep anaesthetic. We don’t see any sign of suffering.”
She explains to patients what will happen, and offers to stay with them until they die “but it’s their call. It’s quite a privilege to be present at such a profound moment.”
Only about one in 10 people who embarked on the road to assisted dying “follow it through to the end”, she said.
Some just want the security of knowing an assisted death is available, some “want every possible minute” with loved ones, and for others changing medical circumstances mean it is no longer possible.
Overall, fewer than 1% of all deaths in the state were the result of the legislation, Forest said: “Many physicians will never face [an assisted death], but those that do, want to do it well.”
Forest’s first experience of people asking her to help them die was at the height of the HIV/Aids era in San Francisco: “In the 1980s we had no treatments that would alleviate much of the suffering. Many of them requested assistance, which at that time was illegal in my state.”
In 2009, Forest’s mother was terminally ill. “She had terrific palliative care in a hospice, but there was nothing they could really do to alleviate her suffering. She would have used aid in dying if it was legally available.
“She asked me if there was anything that I could do, with my privilege and my training, to help create the option of aid in dying. Up to that time, I’d been rather opposed.”
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Forest became involved in helping to draft the law’s protocols: “I was asking, how could we do this at the very top of our field, with compassion but also with skill?”
“I think that dying is very much like childbirth, in that we can offer treatments that reduce suffering, and which sometimes shorten labour, but it’s not up to the physician or the government to decide what level of suffering is being experienced.”
Her first assisted dying patient was a Vietnam veteran: “The suffering he had, the pain, the difficulty breathing was paramount. I was at his bedside when he died, and it was a profound experience because I’d been at many deaths over the years when we didn’t have the tools or the wherewithal to help with a person’s suffering.”
A few years ago, Forest’s husband was diagnosed with a neuromuscular disease that destroys nerve cells in the brain and spinal cord.
“It causes the muscles to waste away, and the mind is completely intact. My husband was a brilliant scientist. He was an epidemiologist, toxicologist, decorated by our state for his work. He went from being an athletic, burly man to wasting away. There was no treatment for what he had.”
“When he got the terminal diagnosis he said, ‘If I didn’t have the option of aid in dying, I would be desperate right now.’ Just knowing there is a way to avoid inevitable suffering for someone who’s dying is an incredible treatment in itself.”
Eventually, after an “excruciating night”, he decided it was time, said Forest. “We rolled his hospital bed out to the back porch, and he took the medication, and within 20 minutes he was unconscious. And very soon after that, he took his last breath. It was calm, he was not suffering, it was not traumatic.
“He was 65 years old, just retired, and he really wanted to live. And I would have taken care of him for ever. But for him, it was the right thing.”
