End of life options: A conversation with Dan Diaz
On what would have been their 4th anniversary, Brittany Maynard’s husband carries on her aid-in-dying work.
You may not recall the name Brittany Maynard, but it’s likely you remember the photo of the young, green-eyed Californian with the great smile and adorable puppy. The picture seemed so incongruous with the fact that, at age 29, she was facing a painful death from an inoperable brain tumor. If that jogs your memory, you may recall the rest of her story – how she had to move to Portland so she could die gently and on her own terms, with a self-administered medication prescribed under that state’s aid-in-dying law.
Two years have passed since Maynard made national headlines, but the man behind the camera, her husband, isn’t letting his late wife or her struggle be forgotten. Dan Diaz was in Colorado this week to talk about aid-in-dying and Proposition 106 – the Colorado End of Life Options Act – on November’s ballot. He stopped by our newsroom for a chat about the propaganda against his movement, the Catholic Church’s role, and the distinction between End of Life Options and suicide.
The Colorado Independent: Your wedding anniversary is tomorrow. What might things have been like if Brittany was still alive?
Diaz: We were married on September 29, 2012. This would have been our 4th anniversary. Brittany and I were in the process of starting a family when we discovered she had a brain tumor. More than anything, she wanted to be a mother. So, by now, I’m pretty sure we would have a family. Who knows? Maybe we’d have another dog, too. That dog in the picture is now 125 pounds, a Great Dane named Charley. Brittany and Charley had quite a great relationship. So, maybe by now we’d have two Great Danes. I’d be at my regular job. It seems cliché, but we’d have our normal life. It’s hard for me sometimes to process that all that is gone. I miss my wife every day. The world is worse off without her. She was one of those people who made everything around her better.
The Indy: Tell me about your career change.
Diaz: Yes. The promise I made to Brittany was to help move legislation so that nobody would have to do what we did – move out of state in order to have a gentle passing. My career was in finance, sales and marketing. I worked for Del Monte Foods and Quaker Oats in consumer package goods. But I left that to now work full time as a consultant on aid-in-dying. That means I’m in a lot of states working on getting laws changed.
When Brittany was alive, my role was fighting for that option of her gentle passing. Now I’m fighting for the rest of us. It’s therapeutic for me. It keeps her in my thoughts, knowing that I’m doing right by her. To me, that’s very important.
The Indy: You’re fairly freshly out of a big victory in your home state, California. What happened there?
Diaz: They had been trying for 15 years to pass an aid-in-dying law in Sacramento. This year, we knocked it out in nine months, and I’d say a good portion of that is because of Brittany’s story. It’s too late for Brittany, of course. But now other Californians in her situation won’t have to pack up and leave the state just because they don’t want to suffer in their deaths. That’s what we’re trying to do here with this ballot initiative in Colorado.
The Indy: Brittany was by no means the first person to seek aid-in-dying, but her story made headlines – even the cover of People magazine. Why do you think it had so much traction?
Diaz: We talked about that when she was alive. We talked about the unfairness that a 92-year-old’s story doesn’t have the same reaction as a 29-year-old’s. We can’t abandon any terminally ill individual. But, acknowledging that, because of her age, people thought Brittany Maynard could be their sister, their wife, their cousin, their aunt. And because of her appearance – which, of course, was something I fell in love with – she was somebody people could relate to.
The Indy: Not everybody has the resources to move out of state like you and Brittany did. How do you address this when speaking with the public?
Diaz: That’s right. Brittany was speaking up and saying some people can’t afford this and that’s not the way it should have to be.
She found a house in Portland on Craigslist we could rent. She established residency. We packed up half our house into a U-Haul and drove 600 miles so she could have the peace of mind knowing she could die peacefully. It wasn’t easy for us emotionally, having to leave our family and friends, making them fly to Portland if they wanted to visit us. And it wasn’t easy financially. I had to take a six-month leave of absence from work. It should not just be that people of certain socioeconomic classification should have this option of a gentle passing. It added extra levels of complication and stress and pressures that we didn’t need, nobody needs.
What really insults me is when opponents say they worry that somehow the vulnerable people from lower socioeconomic classes will fall pray or be vulnerable to aid-in-dying authorization. I am the son of parents who left Cuba in 1962. Spanish is my first language. We didn’t grow up with a lot of money. But I can tell you that you don’t need to be a white, college graduate with a lot of money in order to know what you want for end of life. Opponents claim to protect the more vulnerable in our society. But I would say, having come from lesser means, I’m well aware that people without wealth can make decisions about how they want their last days to play out. It’s insulting to suggest otherwise.
The Indy: Three days after Brittany died, the Catholic Church publicly called her decision “reprehensible.” How did that affect you?
Diaz: I grew up Catholic. I went to St. Joseph’s Basilica in Alameda, California, where I was even an alter boy. I’m well aware of the official doctrine of the church. I’m also well aware that most Catholics, most congregants don’t agree with the position that we shouldn’t have end of life options. I know without reservation that most Catholics agree with the majority of Americans – that the people best qualified to make decisions about end of life is the individual patient working with their physician.
That statement about Brittany came right out of the Vatican. Some church official actually went out of his way to name my wife and take a hardline stance about her choices. He went out of his way to impose his religious doctrine, his faith on her decisions. In the end, I think that type of thing only works against the church.
The Indy: If you could meet with the Pope, what would you say?
Diaz: (He pulls up a news story on his smartphone about Pope Francis’ emphasis on mercy and “not wielding moral laws like a weapon.”) I’d show him this story and ask him how his own words here reconcile with one of his own lieutenants at the Vatican saying that what my wife did was “reprehensible.” I’d ask where is the mercy in calling Brittany Maynard “reprehensible.”
The Indy: The “reprehensible” remark stems from the Church’s – and others’ – view that aid-in-dying is suicide, and therefore sinful. What’s your take on that?
Diaz: What they ignore and what the media ignores is that the goal is always life. They make it sound like if somebody pursues medical aid in dying, they’ve given up. Brittany put the prescription in the cupboard and focused on living, on finding a cure, from May until November. As it happened, there was no cure. There was no holy site or sacred oil to rub on her forehead to cure her. There was no way to pray away her pain or her tumor.
A person who is suicidal is depressed, despondent and making irrational decisions. Brittany was none of those things. She wanted to live.
What she also wanted, in the face of the fact that she wasn’t going to live, was to avoid the kind of agonizing dying process some people endure with brain tumors. There’s pain. There are seizures. There’s the inability to sleep. What she was looking at was the likelihood of blindness and paralysis and much more pain. Despite what critics of this movement say, those are often not conditions that palliative care can help.
So to come out and say it’s sinful or reprehensible that someone with a terminal illness would prefer comfort rather than pain, relief and a sense of control rather than suffering as they’re in the dying process, that’s frustrating. I have no understanding of how wanting a peaceful and gentle passing should be labeled as reprehensible by a church official.
The Indy: There are some critics within the disability community who fear that aid-in-dying will give people with diseases and debilitating conditions license to prematurely end their lives – or give their caretakers license to prod them to do so. What’s your response to that argument?
Diaz: My wife Brittany was given the prognosis of six months. Because of the brain tumor, Brittany did not have the option to continue living, even if that meant cognitive deficits or living with other challenges. If she had been given that option to continue living, albeit with a disability, she would have signed up for that. But the brain tumor wasn’t giving her that option. She was told that in six months this tumor will end your life and this dying process will likely be a brutal one. Brittany basically had an expiration date, no matter what she did to avoid it. Despite the challenges faced by people in the disability community, the difference is they have far more options than she had.
The Indy: What do you say to critics who portray medical aid in dying as weak or dishonorable?
Diaz: I’d say there’s no glory or beauty in suffering. Brittany agreed with that completely. There’s no glory in seizures. There’s no nobility in hour after hour over the toilet puking your guts out. If a person believes they can pray away the pain, pursue that. If a person believes their savior will help them, go with that. But don’t insist that Brittany or anyone else should subscribe to those beliefs. By Brittany having this option, it provided her with a great sense of relief and a little bit of control. It harmed nobody else.
Look, I’m not only doing this because of the promise I made to my wife. I’m doing this because there is a need for medical aid in dying and, as you can see, there’s a lot of pushback against it.
The Indy: Can you talk a little about that pushback and what lawmakers have told you about their personal vs. public stances?
Diaz: For one, there’s a darkness to this issue. People are uncomfortable around the topic of death. They like to think that doctors can cure everything or that palliative care can ease all pain. There’s a real “we got this” assumption out there that’s just false.
… And then there are the lawmakers who tell me privately they support aid-in-dying but say, “Oh, I can’t vote that way because I’m a Christian or because of pressure from my caucus.” And I’m thinking, “Oh, you coward” because this lawmaker isn’t doing his job of representing the will of his constituents, but bending to his own religious beliefs or pressures from his party.
Yes, there’s always pressure from the church and issues of control there. But when a lawmaker tells me he needs to consult with his pastor before voting on a bill, I hope he’s also talking to the hundreds of thousands of other voters in his district he’s elected to also represent.
The Indy: What could Brittany have done if you had stayed in California?
Diaz: Once we got the medication in Oregon, we wondered if we should just go back home, quietly, with it. But we would have run the risk of that being criminally investigated. People run similar risks all the time. They take other prescription drugs like Dilaudid – hydromorphone – behind closed doors, making everyone involved, including family members and physicians, exposed to possible investigation. Brittany didn’t want to do that to me. She believed, as do I, that sunlight is the best disinfectant. The ability to have a law authorizing aid in dying removes that risk and anxiety, which are extra weights that nobody wants to be carrying into the dying process.
Photos courtesy of Dan Diaz and thebrittanyfund.org
Like this story? Steal it! Feel free to republish it in part or in full, just please give credit to The Colorado Independent and add a link to the original.
News Literacy Project event: Concerned about online misinformation? The lack of news literacy? You can make a difference by participating in this free workshop! After […]Read More