For the last 2½ years, with a death sentence hanging over him, Tom Byrne has attempted to squeeze every inch, every minute, every breath out of the life he’s been given.
But when it nears the end, which looms in the not-so-distant future, he wants the freedom to choose how his life closes out. The law, however, makes that final moment difficult for him to control. And that bothers him.
“I don’t want to be bed-ridden,” Byrne said in an interview at his Durango home. “I don’t want to be at the mercy of paid caregivers who come in to take care of me because I can’t care for myself. The idea of giving that (independence) up is appalling to me. But that’s what I have to look forward to.”
There seems to be no chance it will help him, but Byrne is championing legislation that would allow doctors to prescribe life-ending medication to the terminally ill who are fully capable of understanding their decision and able to carry it out on their own.
He and others were disappointed when, earlier this month, a Colorado House committee voted down the “death with dignity” bill, almost certainly ending its chances this session.
Byrne taught English at Durango High School from 1992 to 2010. You might also know him as a rafting guide or a musician. Or as that sometimes cynical curmudgeon with a gold heart who worked diligently to teach hundreds of local youths the importance of reading and writing, both for its intrinsic and real-world values.
“He shouldn’t have to die being pitied,” said Barbara McLachlan, who taught English and journalism at DHS over nearly the same years as Byrne. “He should be able to die on his own terms.”
In a few other states, you can. Oregon’s law took effect in 1997, Washington’s in 2009 and Vermont’s in 2013. Oregon became a lightning rod for the issue last fall when 29-year-old Californian Brittany Maynard moved with her family to Oregon to establish residency and thus be able to take advantage of the law. With the world glued to her story, she ingested life-taking drugs Nov. 1, 2014.
Two California state senators in January introduced an “End of Life Option Act,” similar to the Oregon law. Bills are also on the table in Alaska, Maryland and New Jersey, among others. National polls seem to indicate Americans shifting toward greater acceptance of such laws. Sixty-two percent of Colorado voters approved in a recent poll, according to the nonprofit Denver-based advocate group Compassion & Choice.
On Thursday, Byrne will celebrate his 57th birthday. He retired at age 52, ready to travel and play his guitar, mandolin and Irish bouzouki with An Sliabh, “Durango’s cuddliest Irish band.”
During summer 2012, he was having difficulty riding his bike up a hill, and that prompted him to see a doctor. He was given an antacid for indigestion. Turns out that is a common misdiagnosis for nonlifestyle-related esophageal cancer, which is what he had. After the cancer was finally diagnosed, a tomography scan revealed it had spread, including to his brain.
“Essentially, that was a death sentence right there,” Byrne said.
Chemotherapy and radiation, and perhaps a clinical trial, have possibly extended his life. He has traveled extensively – to Ireland and other countries, to several U.S. states he’d never visited and, finally in December to Hawaii to claim his 50th state. But by then, his left hand had basically stopped working. Playing music was no longer possible.
He’s now under hospice care and is no longer being treated for cancer, just for the pain and discomfort. In his case, it means doctors have said he has six months or less to live.
His handshake is still firm. He can still walk short distances, using oxygen. He can still wax philosophical on any number of issues. But looming large is his death. Soon, he assumes, he will enter the “active dying” stage, which will bring pain, disorientation, loss of appetite and possible social detachment. Then will come restless agitation and possibly hallucinations.
“I’m not there yet, but I can see how it might be coming,” he said.
The thought of being confined to his bed, unable to think straight, frightens him. And that’s why he offered to help Colorado House members Lois Court and Joann Ginal, both Democrats. He wrote a page-long letter in support and was willing to give videotaped testimony. But the Colorado Death With Dignity Act died quickly in the House Public Health Care and Human Services Committee. Two Democrats joined six Republicans in voting 8-5 against it.
State Sen. Ellen Roberts, R-Durango, who never had the opportunity to debate or vote on the bill, was not a fan. It’s an issue she has considered often – as a lawyer, as a former director of the Mercy Regional Medical Center board, as a Mercy hospice volunteer and as a daughter.
Hospice and palliative care, she said in a phone interview, provide a holistic means of support. Dying patients are kept as pain-free as possible, as well as given mental and spiritual care.
“This is a very difficult issue. I totally get the control concern that people have,” she said. But Roberts said the Death With Dignity Act “is not the direction I’ve ever gone in. ... I’m not ready to give up on the care somebody gets through hospice.”
She also drew a parallel with teen suicide, an issue of concern in Colorado. How can you tell one-person suicide is OK, but then turn around and tell youngsters it’s not, she said. They may not see the difference.
Byrne said simply, “I’m dying. How can I commit suicide?”
Mercy spokesman David Bruzzese did not comment directly on the proposed bill but said that with its hospice program, the hospital offers compassion and dignity.
“Our mission compels us to maintain (a patient’s dignity) in the entire continuum of life,” he said.
It’s impossible to cover all the tangential issues in this spirited debate, but many people believe that it’s good to be talking about it. Byrne was chagrined that the bill didn’t make it out of a committee to the House floor for a larger debate. People have concerns such an act would be abused, but the reality seen in Oregon hasn’t borne out those concerns, he said. In 18 years, only about 800 people have taken advantage of Oregon’s law.
Byrne emphasized he’s not even sure he would take the drugs to end his life if it was legal to get them. But he wants that choice, that arrow in his quiver. In his letter to legislators, Byrne wrote:
“... what I find terrifying, is the idea of being bedridden and helpless. Of being unable to control my life. Of no longer taking the least satisfaction from having awoken, as the day holds no hint or suggestion of value. Of my body betraying me, so that I have no option but to lie in my own filth until a paid caregiver appears to wipe me clean. Of pain, the real pain, that racks my pathetic body, my only recourse being heavy medication that fills my waking moments and leaves me a bleary hollow-eyed hulk.”
John Peel writes a weekly human-interest column. johnp@durangoherald.com
California End of Life act (PDF)
