When My Time Comes

by Diane Rehm

  I still consider myself a primary-care doctor, so I see all kinds of problems, with younger as well as older adults. I do see some patients who are nearing the end of life and who want to discuss it. It’s really hard for physicians to talk about death with patients. And some people really need to talk about what’s in store for them and what they’re experiencing. One of the nice things about palliative medicine is that we’re available for people and families to talk about what lies ahead. Death is not a taboo subject for us.

  D: Do you see a change in other medical schools as well, or is it just happening at GWU?

  DR. R: There’s certainly a lot more being taught now than when I was in school. I think there’s a movement in that direction. But physicians are highly motivated to resist death and to go on fighting disease.

  D: What would you consider a good death for yourself?

  DR. R: I haven’t thought about it very much. I probably would like to be able to say goodbye to people. I don’t think I’d want to have a big party with everybody watching, but something more private with close family. Stella got into bed with Mary, you know, and held her. I think that was just a beautiful thing that she did. And I think I would like it to be fairly private at the end, but not alone, if I could help it.

  Mary Cheh

  PROFESSOR OF CONSTITUTIONAL LAW

  MEMBER, DISTRICT OF COLUMBIA COUNCIL

  Mary Cheh is a professor of constitutional law at George Washington University. She is in her fifties, attractive, with intense blue eyes, and is the mother of two adult daughters. She was elected to the District of Columbia Council in 2006, and decided very early on that medical aid in dying was an issue she wanted to work on. She says she felt strongly about the autonomy and the ability of people to make their final choices. In 2011, she began gathering materials. It felt like the right moment to propose legislation, since marriage equality and other major social issues were also being considered at the time.

  I asked her how other members of the council reacted when she first broached the issue of medical aid in dying.

  MARY: The chair of the health committee, whose support would be needed for the initiative, suggested it would be better to wait until some of these other social issues had worked their way through the council, because people need time to adapt to changing social circumstances, especially with big issues like this. So I agreed to wait. And it actually wasn’t until 2016 that I got tired of waiting and said, “Look, I’m doing this.”

  The cases that reached the Supreme Court involved very serious cancers, terminal cases, people who were suffering a great deal. In fact, because it takes so long for a lawsuit to go all the way up to the Supreme Court, most of the patients had already died. The accounts of their situations and their desire to have this option available were pretty heart-wrenching.

  I asked Mary whether she had talked with any of her children about her own wishes.

  MARY: Well, that’s a fascinating question because I have brought it up, and my younger daughter’s response was that she didn’t want to have to make any decisions. She didn’t feel she could handle that emotionally. And my older daughter felt somewhat similarly, but she felt, Well, somebody has to be in charge here. It hasn’t been an extensive discussion.

  One case involved my niece. And nobody was willing to say, “It’s time.” When the physician said, “There’s really no hope,” she was still on a ventilator and other machines. So they asked me what to do. And I had a lengthy discussion with the physician. I tried to figure out whether there was any hope whatsoever, and how my niece could be most peacefully situated so that she wasn’t suffering in any way. In my family, these kinds of decisions just naturally fall to me, which is why they asked me what they should do. And I had to make the decision.

  DIANE: What would happen if you’re not able to let your family know exactly what you want? How would they be able to know?

  M: I know that’s a problem. These laws we’ve passed, here and in other jurisdictions, require that somebody meet certain criteria: that they be terminal, that they have six months or fewer to live, which is sometimes hard to predict. Doctors are usually optimistic. They usually think you have six months, but you probably have fewer than that. A key feature, in addition to getting physicians to assume responsibility, is that you have to be able to self-administer. Those who cannot self-administer cannot avail themselves of this law.

  When we were going through the process with my niece, there was a divide in the disabled community. There were those worried that this would be a step toward euthanasia and people who were disabled would be at risk in the future. So they were opposed to it. But there were others in the disabled community who were disappointed in the legislation because they said, “What if we cannot self-administer?”

  D: For example, someone with ALS?

  M: Exactly right, and I said it’s not a flaw in the legislation so much as it is an understanding of what we could accomplish at this time politically, and also what people would be willing to accept. Would people be willing to accept that somebody else would administer it for you? And I thought that was a bridge too far.

  D: Was the D.C. law pretty much patterned after Oregon’s law?

  M: There are some differences. In our law, the physician is directed to recommend to patients who want to avail themselves of the law that they be in touch with next of kin, or friends, family; that they talk with somebody. In addition, they could talk with a spiritual adviser, if appropriate. Because the faith community felt that if someone is seeking consultation, there should be a recommendation that they consult a spiritual adviser. But they’re not required to do that.

  D: How difficult was it to get the law passed?

  M: It was not easy. I mentioned that the chair of the health committee wanted me to wait because we were focusing on other things. But in fact he was supportive of medical aid in dying. By the time I moved the bill forward, he was no longer on the council. Someone else was now the chair of the health committee, and she was opposed to the bill. If a chairperson is opposed to a bill, he or she can just prevent it from moving forward, and that’s the end of it. But this woman had a lot of integrity and said, “I’m opposed to this, but I do think that people should have a chance to have their say about it.” She had wanted it to be a ballot initiative. She promised to bring it to a hearing and through the committee, and we had a hearing and many, many hours of testimony. There was a three-to-two vote in the committee to push it out. Ultimately, it was an eleven-to-two vote in favor by the council.

  There were two other council members who had an emotional impact on the outcome. One was Council Member Kenyan McDuffie, who recounted his own father’s death and his suffering. He was so moved, he had to leave the dais, because he felt that people should be able to have these choices at the end of life, but he did it in the context of seeing his own father suffer. And another member who’s no longer on the council, LaRuby May, comes from a ward that’s primarily African American. There was a good deal of concern, skepticism, and perhaps even suspicion on the part of African Americans about some of these medical things. As you know, we have a terrible history of taking advantage of African Americans in the medical context.

  LaRuby May and I went over to all the different wards. I spoke to people in the faith community and other groups. When we were about to vote on this, LaRuby said, “You know what, I’m satisfied that the law has these protections in it. I’m also convinced that most people would like this as a choice. They don’t have to do it, but they have a choice. On top of that, since many, many of my constituents are low income, I don’t want to force them to have to travel across the country to avail themselves of a choice like this. I want them to have the same choice as somebody in the wealthier parts of the district.” And that was an important position to take. As you know, the vote was overwhelmingly in favor of the bill. And the mayor signed it.
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  There were many people who came to the hearing to testify. We had a woman, the most wonderful woman, who was herself dying of cancer, and who became sort of the public face, saying, “I would like to be able to do this. I want to have that choice.”

  D: You’re talking about Mary Klein?

  M: Exactly right. She was very, very brave. She was quite ill, too. And she would come and testify, and she would participate in these press conferences.

  D: Were there any demonstrations along the way?

  M: There was a lot of public activity out there. I don’t want to call them “demonstrations.” It was just people who wanted to say why this is important.

  Now, I haven’t actually finished talking about how hard it was to pass this bill. In D.C., Congress can be the local legislature, unlike in the states, which don’t have to contend with Congress trying to control their local affairs. We have something called “home rule,” but Congress, anytime it wants, can interfere in our own local legislation. Congress has thirty days to pick up a bill and negate it. But they have to affirmatively vote against it, both House and Senate. Usually they can’t get their act together.

  The second way they can act is, when we send our budget over there for their approval, they can just line-item it out. And if they had line-itemed out the relatively small amount of money the Department of Health had to spend, they could have killed it that way. There was an effort to do that, but again, it was thwarted in the Senate, with the help of our delegate to Congress, Eleanor Holmes Norton.

  The third way Congress can kill legislation is if they outright pass a bill saying, “So much of this law as it exists in the District of Columbia is hereby null and void.” They could do that at any time. So even while there’ve been some changes in Congress since the last election, we’re always going to have to be vigilant to see if a bill comes forward to try to basically invalidate this law.

  D: How strongly did the Roman Catholic Church work against the bill?

  M: Well, they did manifest their opposition. They made it very clear that they’re opposed to this, and that no facility of theirs, no hospital, no entity that they’re connected with, will be authorized to participate.

  D: So now, we come to the doctors. It’s been more than a year since the law has been in place, and only two doctors have stepped forward to say they will participate. What do you see as the problem there, both for the doctors who don’t want to be known as physicians who will work in this area and for the patients?

  M: Initially, the Department of Health was going to have some sort of registry. That was off-putting to many doctors, because they didn’t want to be listed on a registry. The obligation on the part of the government is to educate people. Every few months, they send out an e-mail blast to the physician community, reminding them that this is available. The numbers are low and have remained low in part because it’s a new thing. But it was never the case that we were putting the burden on the government to find physicians who would participate.

  What I’ve seen in other places is that doctors who participate are asked by their own patients, often patients they’ve seen for a long time, who now find they have a terminal illness, and they have six months to live, and it’s going to be painful. And that person then says to the doctor, “I know I have this option and would you help me?” That’s how I think this thing will develop. The doctor might not have sought it out, because they’re still under an admonition in their own minds about do no harm. Even though it might be more harmful to a patient not to help in those circumstances, there’s still this aura that may make some doctors uncomfortable.

  There are at least five Supreme Court justices who’ve said that even though you can’t have assisted suicide, you can have medication to deal with your pain sufficient that even if it hastens your death, you have a right to have it. We have people doing at-home hospice and they have ports in their arms, where they can self-administer their pain medication. We’re becoming more aware of the need for these options, seeing as you could be hooked up to machines.

  There’s also a notion that you have a right to refuse unwanted medical care, even if doing it will hasten your death. If I say to my doctor, “Take all these things off of me,” and the doctor says, “Well, you know you’ll die within the next two days if we do that,” the doctor can’t insist that you suffer medical care.

  D: Mary, do you believe medical aid in dying is something you would use?

  M: I don’t know whether I would use it, but I know I’d like to have the choice to be able to use it if I wanted to. And you know, Justice [Sandra Day] O’Connor said in the assisted suicide cases, death will be different for all of us. And it will be. It’s not unique in that we’re all going to die, but the exact circumstances that we’re in will be unique. Some people want to stay the course, because there’s some event in their lives, maybe a child getting married, or they’re expecting a grandchild, and they want to try to stay alive to be able to witness that. In some cases, depending upon what their own faith is or whether they think there’s something important about staying alive as long as God wills it, that kind of thing—whatever those circumstances are, I think people should follow their own path, but they should still have a choice. That’s the bottom line.

  When I spoke before the medical society here in Washington, D.C., I was asked questions about what would be on the death certificate. What’s on the death certificate is not that I ingested a certain cocktail of drugs and died from that. What’s on the death certificate is the underlying disease, because we have to put our mind in the right place here. The person is on the threshold of dying. We’re just choosing how, in that little window that they have left, they choose to die. But they are dying from the disease. It’s not suicide in the conventional understanding of suicide.

  D: Will you continue to talk with your daughters about your own wishes?

  M: I have to. I suppose part of this is my own inhibitions. They know how much I love them, and they always will. I want them to have some guidance, of course, but I have been resisting doing much more, putting that emotional burden on them.

  D: One of my hopes with this book is to get families like yours to talk about this very seriously.

  M: I hope that works, because there’s a great need for people to confront things like this. And I don’t think that as yet I’ve confronted it fully.

  Eric Luedtke

  DELEGATE, MARYLAND HOUSE OF DELEGATES

  Eric Luedtke is thirty-seven years old, divorced, and the father of two children. Born in the District of Columbia, he grew up and lives in the Maryland suburbs. He holds a B.A. in government and history, and a master’s in education from the University of Maryland. He has taught for more than a decade in Montgomery County Public Schools and is an adjunct instructor at the University of Maryland. He has served in the Maryland House of Delegates since 2011.

  We spoke in an office that he uses for meeting constituents, about halfway between his home and Washington, D.C. I asked him for an interview because he was involved in the Maryland State House debate over medical aid in dying legislation, which ultimately failed to pass by just one vote.

  DIANE: Tell me a bit about your background.

  DEL. LUEDTKE: I spent the first ten years of my life in Fort Washington, south of the city, and then moved to Gaithersburg, Maryland.

  D: And you became a middle school teacher? For how long?

  DEL. L: Eleven great years. It was the best job I’ve ever had.

  D: Including your present job?

  DEL. L: Yeah. You know, I love the work I do in the legislature, and I make a difference. But when you work with kids, particularly kids who have a lot of needs, you see the difference you make much more immediately. You see the impact you’re having on their lives in a way that, as a legislator, isn’t as apparent. I know I’m making a difference, but I don’
t see it as much.

  D: What led you to pursue a position in the Maryland House of Delegates?

  DEL. L: Partly because I was raised to believe in public service. My mother believed in giving back to her community. She came up through the women’s rights movement in the sixties and seventies, worked for the American Association of University Women, the League of Women Voters, and she instilled that spirit in me. When I made the decision to run for office, it grew out of my experience as a teacher. I taught in a high-needs school. I had students whose parents couldn’t put enough food on the table, families who were living in homes with two or three families, because they couldn’t afford anything else, parents who were working two or three jobs. And you realize pretty quickly, when you work in an environment like that, that you can be the best teacher in the world, and your kids will still need more. So I got active in advocacy to try to help provide more for the kids in the community, and when a seat opened up, I took a shot at running.

  D: Tell us how you first thought about the Maryland End of Life Option Act.

  DEL. L: It’s always been an issue I’ve struggled with. I was originally opposed. The reason I was originally opposed is that I have a history in my family of mental illness. Three family members have attempted suicide.

  D: Attempted?

  DEL. L: Yes. None of them successfully, thank God. But because of that, I feel pretty strongly about suicide. When I was originally thinking about the bill, I was thinking about it through that lens. I was worried that it would normalize suicide, that it was a first step on a slippery slope. But my opinion has changed over time.