19 Mar Fight against brain cancer informs stance against assisted suicide
J.J. Hanson first heard of Brittany Maynard in October 2014, as the 29-year-old woman’s decision to end her life was garnering national attention.
Hanson was struck by what he and Maynard shared: A rare brain cancer called glioblastoma. And predictions from doctors that they would die around the same time.
But Maynard’s story concerned Hanson deeply. His own journey with his disease led him to believe states like Oregon, where Maynard moved in the final months of her life, should not allow what supporters call aid in dying and opponents refer to as assisted suicide.A month earlier, in September 2014, Hanson had plunged into a deep depression after his immune system seemed to give up. He was bedridden for weeks and the stress was hurting his marriage. He wondered, as he added an experimental drug to his chemotherapy treatments, “Is this worth the fight?”
If, like Maynard, he’d had a legally prescribed lethal drug in his medicine cabinet, he might have used it then, he said. But in his case, the doctors’ predictions about his remaining time were wrong.
“If I had made that decision at that point in time, and I had those drugs, I wouldn’t be talking to you,” Hanson said in a telephone interview earlier this month.
Hanson heads the Patients’ Rights Action Fund, which is opposed to laws that permit terminally ill people to end their own lives. New York legislators are considering two proposals that would allow mentally competent adults with prognoses of six months or less to live to request a lethal dose of medication that they would take themselves.
“This is going to take away people’s ability to fight,” Hanson said of New York’s legislative proposals.
Hanson found out he was ill in May 2014, when, at 33, he suffered a severe seizure at a business meeting in Tampa. Until that moment, he thought he was healthy. He, his wife, Kristen, and their son James, then 1, had recently moved to Florida from New York, where Hanson had worked in state government.
An MRI showed two lesions in Hanson’s left temporal lobe. After doctors drilled into his skull for a biopsy, they diagnosed glioblastoma multiforme, an aggressive cancer that starts in the brain.
Due to the tumors’ location, doctors said the cancer was inoperable. They gave him four months to live.
A fighter by nature, Hanson responded by seeking other opinions. A surgeon at Memorial Sloan Kettering Cancer Center in Manhattan agreed to operate, saying doctors there did three similar surgeries daily. The surgeon removed Hanson’s tumors as well as a third that had evaded the eye of the MRI.
But the road to recovery was rough. Hanson lost his ability to walk, talk, read and write. He had repeated seizures. He underwent standard chemotherapy and radiation treatments, then decided to participate in the drug study.
By September, his mental state had deteriorated badly. His family had moved back to New York, to the hamlet of Glen Spey in the Sullivan County town of Lumberland.
By that time in Oregon, Maynard had acquired the secobarbital she would take on Nov. 1, 2014, to end her life. Her widower, Dan Diaz, stressed in an interview with the Times Union last month that having the lethal medicine available did not diminish Maynard’s will to battle her illness, or to live. It allowed her to escape the torture the cancer wrought in its final stages — the sleeplessness, vomiting, pain and seizures — when there was no longer any hope that she could get better, Diaz said.
Hanson, however, does not see aid in dying or assisted suicide as a choice that affects only the individual making it, like marrying a gay partner or taking marijuana for chronic pain might. It is the act’s influence on others that should keep it illegal, he said.
For one, Hanson believes having the option to die will dishearten severely ill patients, especially those who feel they are a burden to their families, when they most need to rally their courage. He thinks about himself in September 2014.
“When it comes to making that decision — or, quote-unquote, ‘choice’ — I was not in the right mental state at the time,” he said.
Both bills before the state Legislature require doctors to refer patients to counseling if they suspect depression or other mental disorders that could impair judgment. Doctors would then not be allowed to prescribe a lethal drug unless a counselor determined there was no such impairment.
Another concern for Hanson involves the nature of rare disorders like glioblastoma, already at a disadvantage in the competition for research funding due to the low numbers of patients who suffer from them. Most patients with these brain tumors die within 15 months of diagnosis, according to the American Association of Neurological Surgeons.
A cure is unlikely unless patients agree to participate in research, like the drug study that appears to have helped Hanson. He fears a majority of the small numbers of patients with rare terminal diseases might choose to die rather than take part in scientific investigations that could save themselves and others.
The experimental drug that Hanson tried likely contributed to his getting where he is now — free of disease, and with an estimated 98 percent of his mental functions intact.
“I’ve been able to fight and survive now for two years,” he said.