Bill Johnson isn’t afraid of dying, but he does fear what will come next as his illness progresses.
And as his life comes to a close, he says he wants to choose how he leaves this world.
Sitting in a wheelchair and looking into a video camera, Johnson relates his struggle with Lou Gehrig’s Disease.
Diagnosed with ALS — Amyotrophic Lateral Sclerosis — in May 2017, Johnson says doctors back then told him he might have two to five years remaining.
“At 83 and looking forward to a terrible, terrible protracted agony — this is not something I want to go through,” he says in the video.
That’s why he agreed to make the two-minute video for Compassion and Choices New Mexico, which was released to the Journal on Friday. The organization is championing a bill in the state Legislature to provide terminally ill people the option to receive medication to end their own lives.
House Bill 90, the Elizabeth Whitefield End of Life Options Act, is named for a former New Mexico judge who died from cancer and advocated on behalf of medical aid in dying. The bill’s sponsors are Rep. Deborah Armstrong, D-Albuquerque, and Sen. Elizabeth Stefanics, D-Santa Fe.
The bill, which has been temporarily tabled, would allow mentally capable, terminally ill adults who have been diagnosed with six months or less to live, to obtain a prescription from a doctor for medication to end their suffering and their lives.
Elizabeth Armijo, regional campaign outreach manager for Compassion and Choices, said New Mexicans overwhelming support medical aid in dying, according to a 2012 survey conducted by Research and Polling.
“I think we have good support in both the House and the Senate, and I think it will pass,” if the Legislative session doesn’t end before they can get to it, she said. “And for the sake of terminally ill New Mexicans, I hope they don’t run out of time.”
Not surprisingly, there is opposition to the bill.
Nevada physician, Dr. T. Brian Callister, an internal medicine specialist and a nationally recognized expert in end-of-life issues, was part of an educational session and press conference conducted in the Capitol Rotunda at the beginning of the legislative session.
He said he told those attending the conference that with hospice expertise and expanded and improved palliative medications, “there is no reason for someone to be in pain at the end of their life.”
That, however, is very different from legislation that would allow doctors to give patients medications to end their own lives.
“That’s called suicide,” Callister said; it’s something he does not support.
According to national medical literature, he said, doctors err from 50 to 70 percent of the time in predicting how long a terminally ill patient will survive. In addition, 17 percent of hospice patients are removed from hospice care because they outlive the six month limit on their stay. “Doctors are good at diagnosing terminal illness, but not how long those patients will live,” he said.
But Johnson knows a thing or two about hospitals.
He was the CEO of University of New Mexico Hospital for nearly two decades, and is a former secretary for the state Human Services Department. He also spent 20 years in the military, working and teaching in health care-related positions in Germany, Vietnam and at West Point.
The pain associated with his disease “is not the singular phenomenon that is occurring,” he told the Journal on Friday. There is also the “crushing fatigue” and associated conditions that are degrading the quality of his life.
“It’s very hard having to be dressed every morning and be put in and out of bed. I worry about my family and how hard it is on my wife, Gloria, who has to do everything for me. It’s an awful situation. It’s demeaning, frustrating and creates anxiety. I have no purpose, no pleasure in life. There comes a point when there’s no value in remaining alive,” he said.
A Roman Catholic, Johnson said he’d like the option of a prescription for medication to end his life at the moment of his choosing, but in the meantime he has signed a “do not resuscitate” directive and has informed his family that he is not to have tube feeding or a respirator.
His family, he said, supports his decision.
If he were well enough to address the Legislature, he said he’d tell them to support HB 90 and he’d remind them that ultimately only he has the right to make decisions about his life — and his death.
The New Mexico Conference of Catholic Bishops opposes the legislation, said Allen Sanchez, its executive director.
“We have a consistent ethic of life from conception to natural death — the same reason we oppose the death penalty,” he said.
Sanchez also expressed concern that a terminally ill person may be coerced by family members to opt for medical aid in dying to preserve life savings for family inheritances.
“One-third of all the hospitals in the United States are owned by the Catholic Church, and the church is committed to alleviate suffering. The problem with this bill is it wants to eliminate suffering by eliminating the sufferer, and that’s not the answer,” Sanchez said. “The debate the Legislature should be having is about fully funding universal health care and making sure palliative and hospice care are available.”