Healdsburg man to take his own life under “End of Life Option” law
One day next week, if all goes according to plan, Tom Negrino will swallow a dose of anti-nausea drugs. Shortly afterward, he will raise a glass filled with four ounces of liquid and drink. Ninety capsules of a barbiturate will be dissolved in that glass. Negrino will follow it up with a glass of good wine, say goodbye to his wife and fall asleep. Within an hour, he will be dead.
According to his wife, Dori Smith, Negrino has fought his body and his health for all his 60 years. He was born with spina bifida, a defect in the backbone and membranes that surround the spinal cord. “When he was born, in the 1950s, only one out of 10 people born with spina bifida lived and of those, only one out of 10 ever walked,” Smith said. “Tom was in the 1 percent who lived and walked.”
Indeed, Negrino walked with a bit of a sway, but he went everywhere vigorously and purposefully. He was the author of 48 books, focusing on Macintosh computers and software. He wrote on his website, “I’ve been writing about Macs, other computers and software since dinosaurs ruled the earth. OK, it’s actually been since 1987.”
Negrino was a contributing editor for Macworld Magazine and a leading figure in the Macintosh movement in Southern California, where he met Smith.
“We were early geeks, he was the vice president of the Los Angeles Mac Users Group,” Smith said. “He was always asked to be president but always preferred to be vice president so he didn’t have to deal with the politics. He once got Bill Gates to come and talk to the users group.”
Negrino and Smith have lived in Healdsburg since 1999. They co-authored a successful book on JavaScript, a computer programming language and according to Smith, Negrino said, “The internet is going to change everything and we can live anywhere. We don’t have to stay in LA to work.”
Smith and Negrino, who later married, had been to Healdsburg to visit friends and liked the community. They bought a home in Parkland Farms, financing the move and the down payment with the success of their JavaScript book.
Negrino got involved in the community and was a founding board member of Access Healdsburg, the local community access television station. Smith said that, with a budget of $300,000, Negrino scoured online auctions and was able to acquire equipment for the station valued, “at probably a million bucks.”
As he aged, Negrino’s health continued to bedevil him. He had a heart attack not long after he and Smith met, he struggled with the side effects of spina bifida and he was diagnosed with kidney cancer in 2010.
“They chopped off part of his kidney and they told him he’d beaten it, but it turned out, not so much,” Smith said. “In 2014 his foot swelled up (he had an episode of deep vein thrombosis) and they found that a tumor in his hip had blocked an artery. That was when they discovered that the cancer had traveled all over his body.” He was diagnosed with stage 4 metastasized renal cell carcinoma.
Negrino went public about his situation in a blog post on May 4, 2016: “Over the past 28 months, we’ve tried a variety of treatments, including radiation therapy and two very different kinds of drugs. I was never under the belief that these treatments would save my life. I was bargaining that they would extend my survival, and overall, they did. But in May 2015, I had to stop the first drug because of a complication. I wasn’t able to restart that drug until September, and three days after that, I had an unexpected allergic reaction to it which gave me a stroke.”
According to Smith, ”Tom’s goal for three years was to live long enough to beat this, to wait for a cure.” They also began to look at other options. California Governor Jerry Brown had signed the End of Life Option Act, which allowed terminally ill patients, under tightly controlled circumstances, to end their own lives.
After much discussion, Smith and Negrino embarked on a journey that led them to now. Negrino has had to prove to multiple doctors that he is capable of making and understanding his own decisions, that he is not being influenced and that he has less than six months to live.
Smith said that Kaiser has been in the forefront of helping patients in Negrino’s situation and gave advice to the couple during this process.
Negrino and Smith have been helped by a vast community of friends they know virtually (through the Mac computer world) and in person. They have been open about Negrino’s disease and have posted regularly on Negrino’s blog and social media. Friends help out with meals, visits and emotional support.
Smith said Negrino is exhausted and ready to rest. “He’s fought and he’s fought, all his life. He’s the eldest son in an Italian family; he’s always been strong. His biggest grief now is that he can’t read or write.”
Smith said that Negrino sleeps about 20 hours a day and that waking up is hard. “Every time he wakes up I have to tell him all over again what’s going on and it breaks his heart and mine. And then he remembers and says he wants to die.”
Next week, a couple of close friends will be there to help when Negrino faces his final decision. Smith decided that she would be there but could not bear to help mix the final drink or to hand it to Negrino. Under the law, he must be aware and capable of lifting the glass and drinking it unassisted.
“Hospice says he is declining quickly now; if he can’t swallow that day he can’t take it. No one can help him,” Smith said, and added, “And he might wake up that day and feel good and decide to put it off. It’s his choice, all the way.”
To learn more about the End of Life Option Act, see the sidebar.
To read Tom Negrino’s blog post about dying, visit: http://www.backupbrain.com/2016/05/ive-had-a-big-secret-now-im-sharing-it.
