Human Interest
Typography

George Skoblin’s disease will kill him within a year. At the best, his body may hold out a little longer.


Having suffered the increasingly debilitating effects of amyotrophic lateral sclerosis for two-and-a-half years, however, Skoblin wants this time frame shortened. He would rather die by his own choice before being rendered completely helpless, fated to death by asphyxiation.

In Arizona, though, his options for voluntary death are extremely limited: Once the effects of amyotrophic lateral sclerosis — commonly known as Lou Gehrig’s disease — atrophy his jaw and throat muscles to the point where he can no longer chew or swallow, Skoblin can legally refuse a feeding tube.

By that point, his body will be burning very few calories. Death by starvation could take a long time.

“I may die in what, two months — very slowly?” Skoblin asked, adding that an assisted suicide would allow him to take a pill and fall into painless sleep, and then death, within 30 minutes. “Which is fairer to a person in this situation?”

Seated in a chair in his Cottonwood Village apartment, Skoblin does not appear ill; in fact, he looks rather younger than his 78 years. He is trim at 150 pounds, having lost 30 pounds of mass — mostly muscle from his legs — in the last year.

Despite his healthy appearance, the effects of the inevitable progression of the neurodegenerative disease has increasingly paralyzed him. In October, when he came to Cottonwood Village, he could drive and use a walker. Due to several falls, he had to be moved into the assisted living portion of Cottonwood Village.

Skoblin lifted each leg with his hands, explaining that he can no longer lift them independently. He must lever himself into an electronic scooter. He wears a urinary catheter. Bowel movements have recently become difficult and he must wear a diaper at all times. He wakes approximately every two hours in the night, needing assistance to turn himself over.

“My life is very limited and of course very difficult,” the former aerospace electronics engineer said. Up until October, he described himself as a “very physically active” individual, taking every opportunity to explore the Verde Valley, documenting his travels as an amateur photographer.

Though forced into the death with dignity discussion — that is, the debate over whether individuals should be able to decide the time and place of their own deaths with the help of a medical professional — Skoblin has taken to it with enthusiasm.

“I have no choice otherwise, so I have to talk about this subject,” he said, adding that, though generally supportive, some friends have had difficulty responding to the news and Skoblin’s forthrightness about dying. “It’s not comfortable for most people to discuss.”

For himself, however, Skoblin is unafraid of confronting the subject. He said that he has grown to like the way conversations now revolve around matters of truth — sometimes unpleasant and frightening, but candid and open.

During the 30 minutes he can sustain sitting at a computer each day, he talks with many people about dying on his own terms.

“There’s nothing hidden in what we talk about,” Skoblin said. “I know I’m talking about something that generations ago would have been unacceptable. Generations ago, no one would even talk about it.”

The question needs to be asked: There are numerous ways to end one’s life — why had he not chosen one of these methods?

“I had two handguns in my collection,” Skoblin answered. “I’d had them for years. After I found out I was terminal, I thought, ‘I could probably drive some place and use one of them to end it right then.’”

Ultimately, Skoblin chose not to do so. Now, his guns are sold. His arms grow weaker with each passing day.

“Do I go in the shower and slit my jugular vein?” Skoblin smiled. “I might miss.”

The issue of choosing one’s own time and manner of death, he insisted, is not one of wanting to avoid pain or indignity. The matter is one of value: How much pleasure can be taken out of life if one’s days are measured by ever-increasing paralysis? Now, Skoblin is still able to enjoy reading, watching films and listening to albums.

But soon, even the ability to communicate with friends will be taken from him. There is only so long that Skoblin’s arm and back muscles will hold out.

Skoblin has looked into the possibility of moving to a state that allows medically-assisted suicide, but Oregon — by his view, the most favorable option — requires a six-month residency to become eligible for a death with dignity procedure.

“I don’t really have any choice about the end of my life,” Skoblin said. “My hope is that somehow Arizona will allow someone with a terminal illness an option to end their life through a hospice organization — but only as long as a hospice organization is involved.”

Asked how he would prefer to be photographed — whether or not there are things he would rather readers not see — Skoblin simply shrugged. “I want these circumstances known to all possible .... It’s a way to let people know about this very important situation so that people can die in peace.”

Death with Dignity
Scottsdale resident Terry Golderg was with multiple system atrophy in May 2014. The rare, rapidly progressing, terminal, neurodegenerative disease took away her ability to walk, talk, swallow and breathe before she died on Feb. 19, 2015.
To honor the first anniversary of Terry Goldberg’s death, the death with dignity advocate organization Compassion & Choices posted a video Terry recorded, in which she and her family urged state and nationwide lawmakers to authorize medical aid in dying as an option for terminally ill adults.
“I would choke and not be able to get my breath. It was really frightening,” Goldberg said in the video, which is posted at the group’s website. “The most significant thing to me is it interferes with the normal interaction that I have with my family and my grandchildren. And when the grandkids come over and everybody is on the floor reading a book and playing a game, in my mind, I think I can do that, too. But in reality, it’s not going to happen.”
Medical aid in dying allows terminally ill adults to obtain a prescription for medication they can ingest to gently die in their sleep. Arizona does not authorize medical aid in dying. As a result, Goldberg chose to voluntarily stop eating and drinking to shorten her dying process.
“I would never, ever leave this Earth unless I was in a situation like I am,” Golderg added in the video. “But it’s taking me only one direction, and such a frustrating, painful, continuous ordeal. That is a deal breaker for me.”
Goldberg’s family supported her decision to voluntarily stop eating and drinking.
“I can’t believe that there is any justification to go through this kind of pain, knowing the final result and not being able to have some kind of control,” Goldberg’s husband, Lance Goldberg, said in the video. “So ending one’s life as a choice versus suffering I think is right in tune with our beliefs.”
Goldberg declined pain and other medications in order to be conscious and coherent while recording the video in the final days before her death.
“And if we knew that she had that option to be able to be guided through that process, it would have given us so much more peace,” Goldberg’s daughter, Leigh Suskin, said in the video.
Currently, only five states authorize medical aid in dying: Oregon, Washington, Montana, Vermont and California. Since 2015, the District of Columbia and 25 states have introduced medical aid-in-dying bills, including the Arizona Death with Dignity Act [SB 1136/HB 2347] last month.
Compassion & Choices is the nation’s oldest and largest nonprofit organization working to improve care and expand choice at the end of life. More information is available at the organization’s website.
The full transcript of the video is posted at:
compassionandchoices.org/userfiles/Terry-Goldberg-video-transcript-2-17-16.pdf
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