by Diane Rehm
D.: How did it begin to change?
DEL. L: It changed with the death of my mother. She contracted esophageal cancer in 2014. I was helping out as her primary care giver, spending a lot of time with her, going to appointments, chemo, radiation, all the treatments. It was a very difficult experience. My mother was an incredibly strong woman, and when she was sick, it was the first time I ever saw her cry. As you know, esophageal cancer is a very painful disease.
She had trouble eating because it hurt to swallow, she had trouble keeping her weight up. In 2015, we briefly thought she was in remission. But they found that the cancer was still there.
D: Oh my, how old was she?
DEL. L: She was seventy when she passed, so sixty-nine through most of this.
D: Very young.
DEL. L: You know, as a child, you have this idea that your parents are going to live forever. And particularly for me, with a mother who was such an extraordinary woman and so strong, I didn’t think anything could defeat her. And then in the summer of 2015, when the cancer came back, she made the decision not to pursue further treatment and passed away that August.
D: Did you accept the idea that she would not pursue further treatment?
DEL. L: I am a strong believer in people’s right to make decisions for themselves. And that decision was a very sad one for me, but I’ve never questioned it. It was her decision to make. I knew she’d been in a lot of pain and that she was struggling, so I accepted it and was supportive. We went through the process of figuring out her will and figuring out how we were going to take care of my brother, who has a severe mental illness, and how we were going to make her comfortable during her last days.
D: Did she have palliative care?
DEL. L: She did. A little bit. I mean there’s a range of palliative care you can get for esophageal cancer. She didn’t do some of the more invasive versions of it, but she had hospice, she had prescription painkillers, and you know, the doctors did their best to try to make her comfortable.
D: To what extent did they accept her decision not to have further treatment?
DEL. L: She was receiving treatment at Johns Hopkins. She had a fantastic doctor who I think wanted to pursue further treatment and tried to lay out some options for her. But when she made a decision, she made a decision, and she made that clear to everyone around her. And he accepted it, I think. She was much closer to another person who worked there, another doctor who was doing a lot more of the direct interaction with her, and that doctor was very understanding and supportive.
D: Before she died, had you heard about medical aid in dying?
DEL. L: It was an issue that had been discussed in politics. So of course I was aware of that conversation, going back to when Oregon became the first state to legalize.
D: Twenty-two years ago.
DEL. L: Right. And I recall that debate at the time. To be frank, it’s not something I really thought about in the context of my mother, because at the time, I was just doing my best to try to be there for her and support her, and I knew it was not legal in Maryland.
D: Had it not come up in the House of Delegates at that time?
DEL. L: It had. It had been introduced by that time, and I had been asked to cosponsor the bill and I had not cosponsored it.
D: Why not?
DEL. L: Because, originally, I didn’t support it. I had concerns that I felt justified opposing it. As an elected official, I do believe we should take strong positions on things. And we should let folks know where we stand and why. But on that issue, I was tremendously conflicted.
D: Can you tell me, if you can name them, your oppositions to medical aid in dying? I realize that you had experienced suicide attempts in your family. What was it about the bills as put forward that gave you concern?
DEL. L: My concerns at the time were not so much about the details of the bills. They had more to do with the issue on an abstract level. I’d say the two biggest things that gave me pause were the concern about normalizing suicide; and, there are some folks in the disabilities community who feel strongly opposed to aid in dying because they believe that it could be abused. I do a lot of work with that community, so I was sympathetic to their argument as well.
D: Abused how?
DEL. L: I think there’s some concern that people with disabilities might be pressured to take advantage of aid in dying. Now, under the legislation that we passed through the House of Delegates this year, I think there are enough protections to prevent that. But I heard from a lot of folks I respect in the disabilities community about their concerns.
D: The African American community also voiced strong opposition. Did you sympathize, recognize, understand their concerns?
DEL. L: Maryland is a state with a very large African American population and a very large Roman Catholic population, two communities that are relatively religious and that have expressed moral qualms about aid in dying. I have constituents that fit in both those groups, and I’ve heard from them. I think elected officials should pay attention to moral concerns, but, ultimately, it’s not our responsibility to impose one religion’s morality on everyone.
D: How did your mother’s death help you change your thinking?
DEL. L: I was there, along with my ex-wife, to take care of my mother as she was dying. It was very difficult to watch. She was obviously in extreme pain, even with all the palliative care she was getting. She was also a very proud woman and didn’t like the idea of me taking care of her, particularly in the sorts of intimate ways you have to when somebody is dying. A few days before she died—one of the last times she ever stood on her own—she went into the kitchen and got the bottle of liquid morphine that she’d been prescribed, and tried to drink it, tried to commit suicide. We took her to the hospital, and she had not taken enough of it to kill her. In fact, she hadn’t been able to drink all of it because of her throat; with the esophageal cancer, it was painful for her to drink. And the doctor sat us down and said, “She’s going to be okay, she’s going to sleep for a little while. But you know she is terminal. It’s within a matter of days.” And then he sort of pulled us aside quietly and said, “If she does this again, don’t bring her back. It’s not worth putting her through that.”
D: Wow.
DEL. L: And we took her home and a few days later, she passed away. She went into a coma and was in a coma for about twenty-four hours.
D: How did they have to treat her to counteract the morphine?
DEL. L: They actually didn’t do much treatment there. They didn’t want to do anything invasive; they didn’t pump her stomach or anything like that. They just let the morphine take its course. She slept for twelve straight hours after that.
D: It’s so interesting that she was given palliative care, but that it didn’t do enough to ease the pain.
DEL. L: A person can never be inside another person’s body and feel what he or she feels. My mother was on some very strong pain medication but she was still in pain, and she said as much. I think the doctors were doing the best they could to manage it, but I think it became unmanageable.
D: Did you speak with the doctors about that and whether there was more they might have been able to do?
DEL. L: I did, and they told me they had given her as much as they could give her without her going into a coma or dying from the medication. And so we left it at that.
D: So her death and the way she died began to change your thinking. Tell me about the process you went through.
DEL. L: In the immediate aftermath of her death, I was in grief, obviously, and I wasn’t thinking about politics. But after a couple of months, you know, we were going back into legislative session. She passed on August 22, so in January, I began thinking about the bill, which I had refused to cosponsor in the past. And thinking about my mother and what she went through, I began
to question whether I had the right, as an elected official or even as her next of kin, to make that decision for her. I think her death would have been less painful, and there would have been more closure, had that option been available to her.
D: Did she at some point ask to die?
DEL. L: She told me she wanted to die.
D: What was your response?
DEL. L: My job was to be as sympathetic as I could, and I told her that I understood and that I’d be there for her and do everything I could to help her, but she didn’t directly ask for the means to die. She just stated she wanted to die, and we never really had that conversation.
D: So she was ill from the time she was first diagnosed with esophageal cancer until she died in August 2015. During that time, did you have any conversations with her about what she wanted at death?
DEL. L: We did. I was given her medical power of attorney. I was there with the doctor when she walked through what she did and did not want. She didn’t want extreme measures, she didn’t want to be resuscitated, and I knew all that. The conversation never reached medical aid in dying because it wasn’t legal. My mother was a rule follower.
D: Did she talk about any of the states where it was legal?
DEL. L: Yeah, but in her mind, if it wasn’t legal, it wasn’t okay.
D: When you decided to sign on to the bill, what did opponents say to you? How did they approach you?
DEL. L: The opponents of the bill, over the course of the last couple of years, have largely focused on religious arguments, moral arguments. That’s most of what I heard from people. And I respect people’s opinions and listen to everyone’s points of view. But as I said before, ultimately I don’t think it’s the government’s job to impose one religious view on another group of people. I’ve had extensive conversations with people who are opposed, because I believe everyone should be heard out. I’ve shared the story of my mother with people, and I think even most opponents of aid in dying understand where I’m coming from.
D: What kinds of arguments did they use?
DEL. L: I think the one I heard most often is that life is sacred, that it’s God’s decision when someone dies. You hear that a lot. In the last couple of years I’ve heard fewer arguments about normalizing suicide. I’m not sure why that is, since it was a prominent argument in the early years of the bill. But the argument that life is sacred and God is the ultimate decision maker in terms of when people pass, that’s the one I hear most often.
D: And what about from the disabled community?
DEL. L: I think that community is to some extent split. There are folks who feel pretty strongly against aid in dying, and there are a number of prominent disabilities organizations that have taken that position. But the disabilities community has a strong thread of independent decision making running through it. Historically, the discrimination against people with disabilities has centered on the assumption that people with disabilities can’t make decisions for themselves. And I think there are plenty of people in the disabilities community who feel like this is a decision they should be able to make for themselves.
D: And what about from the religious community? Do you see any divisions there?
DEL. L: Yes, absolutely. You have a large cohort of people who are opposed to aid in dying for religious reasons, but then you also have folks from some faith traditions who feel that people should have the right to get aid in dying. I had a rabbi in my district e-mail me, after we voted on the bill in the House, and he said his interpretation of Jewish law is that aid in dying is not okay. Then he said, “But I don’t think the House of Delegates should make law based on any one religious teaching.” And he said he supported my vote. That was a pretty profound statement to me.
D: The Maryland End of Life Option Act went through a number of legislative sessions. Four or five in all. Tell me what happened in this last session.
DEL. L: For the first few years, the act wasn’t brought to a vote because traditionally, if the votes aren’t there in committee or on the floor, we don’t bring a bill out to the floor. This year, the votes were there, and the bill came out of the Health and Government Operations Committee. We had a debate on the floor and it passed by an extremely narrow margin, but it did pass and was sent over to the Senate. And then, the Senate committee watered down the bill with amendments, to the point that it would have been very difficult for anyone to actually make use of the law.
D: What kinds of amendments?
DEL. L: Requiring people to go through a lengthier process of getting approval from doctors, reducing the protections for liability for doctors, things that would have made it very difficult for doctors to actually prescribe the medication involved in the bill. As a result of that, a number of the organizations that had been supporting the bill started to withdraw their support. But the bill was brought up for a vote on the Senate floor anyway, and it failed by one vote.
It was a very closely fought issue the entire time, in both houses. We had a very emotionally wrought debate on the bill when it came to the House floor. I spoke about my mother. One of my colleagues spoke about her experiences as a cancer survivor. It was a very difficult conversation to have. The bill went over to the Senate, and I think a lot of senators were struggling with the issue. There was an effort to whip the votes, to get the votes together to pass it. It was on a relatively short time line because the lead sponsor in the Senate was called up to military orders. So they had to call the vote before he left. But when the vote came up on the Senate floor, they had a pretty—again—emotionally wrought, tense debate. And it failed by one vote. There was one senator who did not vote at all.
D: I understood it was close to a tie, for a while.
DEL. L: It did end up one vote short of what it needed to pass, with one senator not voting. I think the advocates and the lead sponsor are now considering how to bring it back next year, and how to make sure it gets through this time.
D: And just a week after the vote, the New Jersey Legislature passed the Medical Aid in Dying Act, based on Oregon’s law. How did that make you feel?
DEL. L: I was disappointed when our bill failed. Maryland tends to look at a cohort of other states that do certain types of legislation almost in tandem. New Jersey is one of them. New York, Illinois, California, Hawaii, Washington. As more of those states have begun to legalize medical aid in dying, it becomes more likely that Maryland will. So it gives me some hope.
D: What would be a good death for you?
DEL. L: I’m going to answer in the context of my mother. I think it would have been a good death had she been in less pain, and been able to be with us to say goodbye, had there been some knowledge of when it would end. I think a good death would have been a death where she was more comfortable with the process of dying.
D: Were you with her when she was dying?
DEL. L: I was. But we didn’t know when it was going to come. And she had gone into a coma. We had sort of said goodbye, but there was no moment of closure and that was difficult. Earlier today I was at the funeral for the Speaker of the House in Maryland. And the priest spoke of death and how difficult it is for us to comprehend death. He said, “You know, death has been a part of life as long as humans have been alive, and we still don’t really understand it.” He said that “lack of understanding leads to fear, but fear is normal.” What he left unsaid, I think, is that a good death is a death where there’s closure and where one can be around one’s loved ones and look back on a life well lived.
I think this is a very difficult debate for a lot of people. But I think public opinion is shifting nationwide. In my legislative experience, the closest comparison is with the legalization of gay marriage. When I was first active in politics, and as an advocate in the late nineties, we didn’t think that was likely to happen. Now it’s legal nationwide. I think we’re seeing a similar shift in
public opinion with aid in dying, and I think politicians will make the right decisions as we move forward.
Alexa Fraser
A DEATH WITH DIGNITY SUPPORTER
Alexa Fraser lives in a lovely home in Rockville, Maryland, where I spoke with her in July 2017. She greeted me warmly. In December 2016 she had been diagnosed with soft-tissue cancer of the uterus, and now her light hair was just long enough to cover her scalp, having begun to grow back after surgery and chemotherapy—her final round of chemotherapy had been in May. Alexa has a Ph.D. in environmental studies and did a lot of work on human health exposures. Then she decided she wanted a different career, so she studied to become a Unitarian Universalist minister. At the time of our conversation, she was an intern at a local congregation.
I asked Alexa to tell me about her father, a very handsome man whose portrait hangs on the wall behind where she was sitting. He had Parkinson’s disease, she told me.
ALEXA: Well, my dad was a guy with a lot of flair. He started something called the Open University of Washington, which was a place people could go to take a class in something fun. Playing bridge, sailing, how to marry a millionaire—that was one of his classes—bringing people together. He actually sold the business to a friend but went on running tons of classes. My parents got divorced when I was quite young. He never married again because it was way too much fun to date as many women as he could.
DIANE: And how old was he when he was diagnosed with Parkinson’s?
A: He was in his late eighties, about eighty-six. He had had essential tremor, which is a condition that causes your hands to shake. When exactly that transitioned to Parkinson’s, it’s hard to know. By the end, he had other symptoms, including rigidity. He was normally very athletic. He swam all his life, he ran, he loved to sail. He had such an active and full life. He wrote and directed plays that were produced off Broadway, and was involved in theater here, too. Whatever was fun, he wanted to do, and he did it. But I noticed he was shuffling rather than walking.