by Diane Rehm
D: Were any decisions made between the two of you at the time, as you processed that news?
DAN: Before she went into surgery, Brittany was researching different treatment options, clinical trials that might be available to her. She had already found the Oregon Death with Dignity program. In her undergrad time at UC Berkeley, that topic was discussed in one of her classes. For me it was brand new. I was unaware that such a program even existed. So, by January 3 or 4, Brittany told me we would continue to fight this tumor. “But if shit gets bad,” she said, “we’re moving to Oregon.” She knew how that brain tumor would end her life, and it would be a brutal dying process, so she simply wanted to have peace of mind that her final few days “on this green earth,” as she said, her dying process, would be gentle, and that she would not suffer horrifically. By the end of the conversation, I recognized that, if I were in her position, I would be saying the exact same thing. There wasn’t any sort of conversation of her trying to convince me—it was just kind of automatic, like, of course, that’s what we will do.
D: So Brittany brought up the idea that you and she would move to Oregon from California?
DAN: Yeah, and those details are what we worked through. Based on the research that she went on doing, she found that she would have to become a resident of Oregon, which meant she would have to get a driver’s license and change her voter registration. We’d have to rent a house, and she found a house to rent on Craigslist. She found a new medical team at Oregon Health & Science University. She went through all those steps and decided to speak up because she thought it was a huge injustice that a terminally ill individual, after being told she had six months to live, all of a sudden had to go through the process of leaving her home to get across some imaginary line on a map; that in Oregon, she would have the option of a gentle passing, but that if we stayed in California, she ran the risk of essentially being tortured to death by the brain tumor.
D: Dan, I’m wondering about the practicalities here. What about your job, your ability to earn a living? What about the practicalities of moving to Oregon?
DAN: None of it was easy. I ended up having to take a leave of absence from work, and when that occurs, of course, your salary gets adjusted down. I think it was you get 60 percent of your salary, and then you have to contribute more to certain benefits and health insurance, so it took a lot of orchestrating and talking to Human Resources. When I look back at the fact that we had to go through that process, having to go through the bureaucracy and getting all this taken care of, that’s the time we felt cheated of and wanted back. Brittany also knew there are so many people who would not have the resources and ability to do this. I’m thirteen years older than Brittany, and I had worked very hard to get us somewhat established, and the idea that we were paying a mortgage in California and also the rental of a house in Oregon, maintaining two properties, and paying electrical bills times two—no, nobody should have to go through that. That’s why Brittany spoke up.
D: I know this is not easy, and I don’t want to make you uncomfortable. Are you okay talking with me about all of this?
DAN: Oh sure. Sharing Brittany’s story is the promise that I made to her.
D: It’s Brittany’s story, but it’s also your story, because you were left behind. You know, there is a coincidence here because I go out to OHSU for my voice treatments. It’s a wonderful place, and I’m glad you and she had that kind of institutional care.
DAN: Her palliative-care team at OHSU truly was extraordinary. It provided the support she needed to navigate the six months while we were up there in Portland.
D: So at that time, Brittany was a resident of the state of Oregon, and you remained a resident of the state of California? Going back and forth while she was there, or staying with her the whole time?
DAN: There were certain things that Brittany wanted to do with the time she had left, which included traveling to certain destinations. One of the places we went to was Yellowstone National Park, where she’d wanted to go for quite a while. When we were on that trip, in May, we received an e-mail saying that Brittany was approved for secobarbital, the medication used for medical aid in dying. By July, we were both in Oregon full-time. I ended up taking a six-month leave of absence from work.
D: And was Brittany experiencing pain during that time?
DAN: She felt a lot of pressure at the base of her skull and neck. From February to May, things were better—she wasn’t in pain too much of the time. But by July, August, September, October…those last two months she was getting more and more uncomfortable. The seizures were what terrified her the most, and those became more frequent and more severe. I could often tell a seizure was happening before she would notice it because I would see her left eyelid start to flutter. And she said she had a metallic taste in her mouth. A seizure happens when electrical impulses in a person’s brain are firing, and it makes the muscles in that person’s body twitch and contract. The expression on her face became different because her muscles were contracting. The rest of her body would start to twitch—her arms, her legs—and we’d typically get her sitting. A few happened while we were standing, while we were on a hike, and she would quickly sit down and I would be there to support her. She would usually be unable to speak or communicate at all or to write anything for maybe twenty to thirty minutes afterward. The sentences she would try to form just wouldn’t make any sense.
Those were the mild seizures. The full grand mal seizures, where every muscle in her body was contracting, were terrifying since on a couple of occasions, as she came out of the seizure and kind of regained consciousness, blood came out of her mouth because she’d bitten through part of her tongue. My job was just to keep her from being injured by an external object or by falling and hitting the ground. Twice she was near a bed, so she managed to get to the bed and I managed to keep her from falling off it as her body went through those convulsions.
D: Were those convulsions part of the reason she made the decision that the time was coming close?
DAN: The seizures certainly played a part in tracking the progression of the tumor. There were days when she would say, “Today I can tell, it feels like I am dying.” The inability to sleep for days on end, the vomiting, the seizures, these are the things she was sort of using to gauge the progression of the tumor. And in addition, we had monthly MRI scans where we could see the progression of the tumor.
D: Between those seizures, did she experience happiness? Did she experience an ability to enjoy life, even if only for brief periods?
DAN: Yes. Thanks to her determination, Brittany kept on taking trips. We went to Olympic National Park in Washington, we went to the Columbia River District in Oregon. We took a helicopter tour of the Grand Canyon. That was during the last two weeks of Brittany’s life. These were the things she wanted to do as she was fighting against that tumor, battling in order to enjoy the things that were so important to her.
D: Did the fact that she had been approved to receive the drug she wanted to use to end her life somehow give her freedom to enjoy what she had left, because she knew when her moment came, she had the power to end her suffering?
DAN: When she received approval for the medication, it provided her an enormous sense of relief, a sense of having just a little bit of control in the midst of the chaos of a brain tumor. So much felt completely out of her control. Having the secobarbital allowed her to focus on life, because she no longer had to be so concerned about the dying process. It allowed her to do the things she wanted to do. It was very evident to me how much relief it provided her. Her outlook from that point on was completely different. That fear was gone. She could now focus on living life, not being so terrified of death.
D: Brittany chose November 1, 2014, to end her life. She chose that publicly, weeks in advance. Can you tell me why?
DAN: I think people will understand. Brittany wanted to live to
celebrate two dates in particular. One was our wedding anniversary, which is September 29. To get through that month of September, she was really battling against the symptoms as she was feeling the cancer continuing to grow. The second date that Brittany wanted to celebrate was my birthday, October 26. So she said that if she possibly could, she’d try to make it to November 1.
By no means was that any sort of a hard-and-fast date. Brittany set herself the goal to celebrate those two special days. I asked one of her physicians about this, whether terminally ill patients sometimes set these goals. And the doctor said, “Oh yeah, some patients absolutely do.” They say, “I want to live to this date,” and if they achieve that, they’ll set another one. But in October, things started getting much worse.
The pain became more and more intense. She would sleep with this heating pad around her neck because of the pressure at the base of her skull. It was like this beanbag, and we would have to heat it up in the microwave, and then she would put it there. It would feel good for a while, and she’d be able to get a little bit of sleep. But sleep became a luxury.
During the last month of her life, the seizures were coming every four or five days. As the tumor continued to grow and put pressure on different parts of the brain, it would push on the optic nerve and she would lose her eyesight. It’s not uncommon for a person who has a brain tumor to suffer a stroke. Depending on what part of the brain is damaged due to lack of oxygen during the stroke, that person can lose the ability to stand, walk, swallow, the ability to communicate altogether. Partial paralysis was likely, complete paralysis was a possibility. That’s what Brittany was facing. And she said, “I will not die that way.”
The biggest safeguard of medical aid in dying is that two physicians, independent of each other, have to agree that this person is terminally ill, that she has six months or less to live, and that she is mentally competent. The patient must make the request both orally and in writing. There’s a fifteen-day waiting period, and there are witnesses involved. Another strong safeguard is that the individual has to be able to consume the medication on her own. So, if Brittany waits too long, or if she does suffer a stroke, it leaves her trapped in her own body and she’s unable to consume that medication. She would end up dying the very way she was trying to avoid, suffering a massive stroke in bed with tubes coming out of her. That’s the thought process Brittany was going through, making decisions based on what she was suffering day after day and the progress we were seeing from those MRIs. So it did end up being November 1.
D: Can you tell me about that day, how it began? The press was very much focused on it. I felt so horrible for her as we in the public were watching this poor young woman suffering through this horrendous problem, making her decision in public. I wanted to know about the private side.
DAN: In one regard, rest assured that Brittany and I did not feel that pressure or that we were under a microscope as far as the public was concerned. That was family time, and we were taking care of one another. She released a video at that time, saying the decision was hers, that it should rest with the terminally ill individual. The hope is that you don’t need to use the medication, but the decision belongs to that individual, and that’s a good thing.
Well, the media ran with the story, because she said that if she were still alive on November 2, it just meant we were navigating through this. It must have been a slow news day. Somebody said, “Oh, now this girl has changed her mind from November 1 to November 2.” And that’s bullshit. There was no story there. They took Brittany’s words out of context, spun them into something they wanted to, and ran with that story. Shame on them. That’s not what you asked about, but just so you know, that’s what was going on from our point of view.
As far as November 1, my wife was a bit of a planner. She had laid out a lot of instructions for me, pertaining to the ceremony she wanted, where to scatter her ashes, how she wanted that ceremony to go. She had instructions for some of her friends, instructions certainly for me, about the dogs, and things pertaining to our house. So on November 1, Brittany had her friends there at the house in Portland, and she said she wanted to go for a hike that morning. We went for a walk because by then she wasn’t feeling that great. Her parents, three of her friends, one of my younger brothers, and the two dogs. We walked Brittany’s favorite trail.
I want to be clear that there wasn’t this sense of a heavy, dark feeling or anything. It was just a conversation about life and love and fun times. We were probably gone from the house for close to two hours.
Brittany had had a small seizure that morning. It was a reminder of what she was risking. When we got back to the house, she told me, “It’s my time.” That’s what she said. There are other details that I do want to keep personal and private.
D: I understand.
DAN: She had time with each of us, with her friends, going through certain things from her closet, giving certain things to her friends. And there’s a process regarding the medication. The patient first takes something that gets the system ready so there are no issues in the stomach.
D: To keep it there, and not to expel it.
DAN: Exactly. And since this was all at Brittany’s direction and she was controlling the whole process, I think that’s why there wasn’t any anxiety. There were one hundred capsules. One of Brittany’s friends and my younger brother opened them. I helped out with some of that, but I wanted to be next to Brittany during all this time. Brittany’s mother and her stepdad, Gary, were next to her beside the bed. Her friends were at the foot of the bed. And Brittany said, “I want people to be comfortable, so we’ll have chairs so people can sit or they can stand if they want.” And I was in bed next to her and we actually had our small dog, Bella the Beagle, in bed with us as well. It was a very loving feeling. And she said she wanted us to talk about happy things. So she was in bed and I was next to her in the bed, with her friends surrounding her.
The secobarbital, after it’s prepared, has to be mixed with about four or five ounces of water. Within five minutes after consuming it, she fell asleep, and it’s just as if a person is being sedated, she gets groggy and little by little, falls asleep, no different from the thousands of times I’d seen Brittany fall asleep during the seven-plus years I knew her. I was tracking her breathing, and at around thirty minutes it continued to lessen, and it slowed to the point where Brittany passed away. That was the dying process.
D: So peaceful.
DAN: And that’s not at all how her dying process would have gone if the brain tumor had continued to run its course and inflict all of those horrific symptoms on her, the seizures, the pain, the nausea, the vomiting, and what was coming, which was right around the corner, the likelihood of blindness or paralysis.
It’s not that Brittany was choosing between living and dying. The living part was not on the table. The only thing Brittany was choosing between was two different ways of dying. One was gentle, the other would have been filled with pain and suffering. It’s something that I try to emphasize because I think people have the wrong frame of mind. She wanted to live. The brain tumor was ending her life.
D: Dan, you and I have both been speaking around the country about medical aid in dying. I have heard so many people raise the question of religious belief as a reason not to end one’s own life despite the suffering. I believe that if someone feels God should be the only taker of life, I respect that, and I’m sure you do, too. How do you respond to those who say no one should be allowed to take one’s life no matter what?
DAN: With full respect for an individual who, if they were in Brittany’s predicament, would wish to attempt to pray away the pain, pray away those seizures, pray away that advancing brain tumor, I’d be the first one to defend their decision to make sure their wishes are carried out. The strength of this program [medical aid in dying] is that it’s an option that a person has to apply for, qualify for, and finally be
granted. If for religious reasons, somebody in Brittany’s predicament is not on board, then they simply wouldn’t apply for it.
Curiously enough, though, a poll done by a Christian organization shows that support among Christians is just about 70 percent. Support among Catholics is 70 percent. I was in Massachusetts, where good old Irish Catholics in Boston at the State House supported it by 72 percent. In New York, even though the council of bishops is opposed to it, support among Catholics is closer to 74 percent.
While I understand the official position of the institution of the Catholic Church, the congregants agree with Brittany, that a terminally ill individual should have the option of medical aid in dying. And since I grew up Catholic, I know I frustrate them because I have absolutely no problem reconciling this medical practice with my faith and my relationship with God. God is a loving, caring, compassionate deity, and there’s no conflict there at all for me. It just comes down to the individual.
D: Do you see the country moving in the direction that you and Brittany chose, and do you believe greater acceptance is coming?
DAN: I think so. When Brittany died, there were four states that allowed medical aid in dying: Oregon, Washington, Vermont, and Montana. In the last two and a half years since Brittany died, we’ve passed legislation in California, Colorado, D.C., New Jersey, and Maine. I have to remind myself that legislative matters move slowly, but I’m impatient.
I do believe that Brittany’s story made a huge impact on passing legislation in California, Colorado, and D.C. But opposition to this legislation, even in states that have passed it, continues. Quite regularly, some lawsuit will be brought by an attorney who’s representing maybe one or two physicians as plaintiffs. This happens in Oregon, Montana, California. For twenty years, the opposition has tried to chip away at the legislation or use a different angle in the attempt to get it overturned or negated. But that’s where an organization like Compassion & Choices comes in. They send attorneys to battle against that. So the opposition will continue in its efforts, but the good news is that the law has been in effect for twenty years in Oregon and the plaintiffs have been unsuccessful.
