Seizures terrified Brittany Maynard. And on the morning of Nov. 1, 2014, she had another one.
It was yet another sign that the 29-year-old's brain tumor was winning. Found to have the tumor just 10 months earlier, she had made it – with difficulty – to celebrate her husband's birthday and their anniversary. She did not fear death. The tumor would see to that no matter what. What she feared most was an escalation of the intense and constant pain she was already experiencing, the loss of her vision, a disabling stroke.
They had planned for this day. She already had the drug she had fought to get. That afternoon, Maynard's husband, Dan Diaz, got into bed with her and folded her into his arms. Friends and family surrounded them. She drank a solution of secobarbital and fell asleep. Her breathing gradually slowed. In 30 minutes, she died.
She had posted earlier that day on Facebook, "Goodbye to all my dear friends and family that I love. Today is the day I have chosen to pass away with dignity in the face of my terrible illness, this terrible brain cancer that has taken so much from me … but would have taken so much more."
Before she died, Diaz promised Maynard that he would honor her legacy by doing what he could to get legislation passed so that no one would have to go through what she did. They had moved from their home in California to Oregon, which had passed legislation that gave her access to the medication and allowed her to use it.
By now, six states and the District of Columbia have passed similar legislation, giving terminally ill patients more options at the end of their lives. Legislation has been introduced, but not yet passed, in many more, including Pennsylvania and New Jersey.
The promise Diaz made to his wife brought him to a symposium on palliative care earlier this month at Thomas Jefferson University, where he gave the keynote address. We spoke to him about Maynard and his mission.
As a result of your promise to Brittany, you now work with a nonprofit called Compassion and Choices. Tell us about that.
The organization is focused on helping individuals navigate important end-of-life decisions. Many focus on the death-with-dignity portion, but it's so much more than that. It includes things like filling out advance health-care directives, making your wishes known to your loved ones, your family, your caregivers.
It has launched a site called Truth in Treatment. Sometimes, the health-care system is kind of like a conveyor belt the patient gets placed on. Brittany and I saw this firsthand. Especially when we're dealing with cancer, it seems that they say, "If chemotherapy isn't successful, we have this other treatment. And if that doesn't work, we have this other one." The issue with that is that a lot of times, nowhere along the line do medical professionals stop and say, "What's important to you, the patient? What are your goals?"
I'm careful not to be too critical of this because the incredible advances we've made in medicine are able to keep an individual from suffering. They are able to keep individuals living longer. But at times, depending on the condition of the individual, it may not actually provide any more quality of life. In fact, a lot of times those treatments can severely diminish a person's quality of life.
Twenty years ago, in Oregon, they called the legislation the Death with Dignity Act. In California, the name of the legislation is the End of Life Option Act. It's more descriptive. There are many options that a terminally ill individual should have afforded to them at the end of life.
What opposition do you face, and how do you respond to it?
The opposition often uses the term suicide, or physician-assisted suicide. They even use terms like euthanasia, which is administering something to a patient to hasten their death and is illegal in all 50 states. So the term euthanasia has no place in this discussion. They use those terms to great effect because they evoke fear. But the term suicide is neither appropriate nor accurate when describing this. A person who is suicidal is a person who wants to die. Brittany wanted to live. Right away, we're talking about two completely different segments of the population. A person who is suicidal is someone who is depressed, despondent, making irrational decisions. Brittany was none of those things, and everyone on her medical team would attest to that.
Brittany was simply securing this medication so that she could avoid suffering for her final few days on this green earth. That's what this program is about. That brain tumor was ending her life. And of that, we had no control. The one thing Brittany could control was simply the manner in which her dying process might go. It's not like a terminally ill individual is choosing between living and dying. They are choosing the method in which they will die.
Other criticism comes from individuals who don't have a true understanding of all the safeguards that are in place. But when I explain the safeguards – two physicians, independent of each other, have to agree that the person is terminally ill; there's a 15-day waiting period to get the drug, etc. – that alleviates those concerns. Being disabled does not qualify a person for this. Being old does not qualify a person.
From the religious side, people will make that case that this is tinkering with God's will. I remind them that the strength of this legislation is that it's an option. A terminally ill individual has to apply for, qualify for, and finally be granted permission for that prescription. If they are opposed to this medical program, those individuals would simply never apply for it if they were to find themselves in Brittany's predicament. As a Catholic myself, I'm well-aware of the official position of the church. However, the congregants, the individuals that go to church, by and large agree with Brittany.
Tell us a little more about Brittany's situation.
We found out about the tumor on Jan. 1, 2014. She had an eight-hour brain surgery on Jan. 10. At that point, she was given three to five years to live. Two months later, the tumor showed signs it was growing aggressively. It was the most aggressive type of brain cancer. At that point, they informed Brittany that six months was all she had left. She was already suffering symptoms. That included constant pain. The fatigue, the nausea, that became baseline. It's amazing what a person can come to think of as normal.
The seizures are what terrified Brittany the most. When those would occur, they would leave her unable to speak normally for 20 to 30 minutes afterward. What was coming next for her, as the tumor grew and put pressure on other areas of the brain, was that she would likely go blind and become paralyzed. It's not uncommon for a person with a brain tumor to have a stroke. Depending on what part of the brain is damaged, the person can lose the ability to communicate, to stand, walk, or swallow. Brittany said, "I will not die that way. Why should I be forced to?" The swallowing was a concern because, under the law, the patient has to administer the medication. If she lost the ability to swallow, then she would be forced to die trapped in her own body. That was the very thing she was trying to avoid.
If you were to ask anyone, which I've done for the last three years, "Given your druthers, how would you prefer to die?" most people answer the same way: "Just in my sleep, unaware." That ability to have that gentle dying process is something that we kind of take for granted and expect that that's how our final few days might play out. For Brittany, she had to fight for that.
Less than a month before Brittany died, she shared her story in a video that ran on numerous television networks. She gave interviews. Why?
She was hoping to make a difference for any terminally ill individual. Even as she was navigating her own dying process, she decided to speak up to help others. It's just one more example of the way she lived her life — looking out for others, for those individuals who might not have the ability or the voice to make that change. After that video got as much attention as it did, Brittany was weary. She knew she didn't have much time left. She decided for those two weeks, that she would lend her voice to this cause to make a difference for other terminally ill individuals. So no one else would have to leave their home, like we did.
What's your message for physicians and politicians?
For medical professionals, that one's easy. I thank them for everything they do. The care that Brittany received, the support that we received, was just immeasurable. So for the medical professionals, it's always a sense of gratitude. I also remind them that Brittany did not feel that the medical profession had failed her. Death, or dying, is just a part of living. Death will happen to each and every one of us. Hopefully, you'll live to be 90 years old, not 29, like Brittany. But there's a difference between extending a person's life in a meaningful way, versus prolonging their dying process. The cost of that can be a lot of pain and suffering.
For politicians, I remind them that this is not a political issue. This is a medical issue. There is no way that a politician sitting 3,000 miles away will ever be in any position to know what is best for a terminally ill individual like Brittany. However, the person that is in the perfect position to navigate their own dying process is that terminally ill individual working with their physician.
It's frustrating when a politician will attempt to disallow this legislation. They are basically condemning a person like Brittany to suffer horrifically. Brittany's response was, "No, I do not accept that."
This must be difficult for you. What keeps you going?
It's the promise I made to Brittany that I would do what I could to help pass legislation so that no one else would have to go through what she did – having to leave home. She thought it was a huge injustice, that if we stayed in California, she would likely suffer a brutal dying process. But if we were in Oregon, it could be a gentle passing. What keeps me going is that this is the way I honor that promise and, in a sense, her legacy. As far as what I keep foremost in my mind, I remember all the good times — our first date, weekend trips we took together, holidays, our wedding day, our honeymoon. All of those make me smile.
When I think of those last 10 months, that's also what keeps me going on this legislative front. I remember seeing the relief that just having the medication provided Brittany. It was taking that little bit of control back from the tumor. When you're facing death, that's huge.
That's why I continue this fight.