When My Time Comes

by Diane Rehm

  D: What about VSED (voluntary stopping of eating and drinking), which my husband of fifty-four years had to do to end his life because medical aid in dying was not available to him?

  DR. K: Well, for some people VSED can be not that painful. But for others, it can be a horror show.

  D: Should family members have a say? Who makes the decision if there’s no agreement?

  DR. K: I believe in patient autonomy. The patient is the boss of his or her own decision making, and that’s the way it works most of the time. Occasionally the family will come up with something that would supersede patient autonomy, but that is very, very unusual. Patients have the right to be able to do what they want for themselves, unless they’re not mentally competent.

  D: But what if a family member or a friend opposes medical aid in dying? You believe in patient autonomy, but there can be great discord in that family when the time comes.

  DR. K: First of all, I am in Massachusetts, where medical aid in dying is not legal. So I could never apply it here in this state. When I had a patient ask me about giving medical aid in dying, I did not give it to him. I was a coward. I’m ashamed that I did not. I did not give him a prescription for sleeping pills so he could go home and take them and die peacefully because I was concerned that it violated the laws and that I could lose my license or, worse still, go to jail. Even if I had wanted to try medical aid in dying based upon the Oregon laws, I couldn’t have done so because he wouldn’t have met the law’s criteria.

  In 2012, an initiative was introduced to bring right to die laws to Massachusetts. Though he didn’t work on the campaign, Roger thought it was a “slam dunk” since polls had shown that 60 percent of the people were in favor. In the end, support went down from 51 to 49 percent, and the initiative was defeated after the “no” camp raised $5 million and aired disinformation advertisements on television. Roger believes the opposition came predominantly from the Roman Catholic Church.

  As for doctors, in a poll of the Massachusetts Medical Society taken in 2017, two-thirds of the doctors who responded felt that medical aid in dying should be permitted in the state. In December of the same year, Mass Medical changed its stance, in support of “engaged neutrality,” meaning that the organization will help doctors to do things properly when they become legal.

  I asked Roger about charges that medical aid in dying is actually suicide.

  DR. K: The people who are dying do not want to die. I don’t want to die. I’m not even sure I’d use medical aid in dying. If I do, it’s not because I want to die. I enjoy my life. I love my life. I’m not looking for a quick exit. I will live as long as I can. One out of three people in Oregon who end up getting prescriptions for medical aid in dying don’t take it. If you look at the statistics, one in four people end up dying with uncontrollable pain. If you wait until you’re at that point, most people who try to get end-of-life medications aren’t able to. They die while they’re in the process.

  D: What about those who live in states where medical aid in dying is not permitted?

  DR. K: They’re forced to pick up and move their entire households to another state. For example, Brittany Maynard moved from California to Oregon, because she had inoperable brain cancer and knew she would die in excruciating pain if she didn’t have medical aid in dying. But most people can’t afford to leave a job, their support structure, family, friends, clergy. And then you have to find physicians. Many doctors don’t want to help people with medical aid in dying, so it’s not like you can just make an appointment with any doctor. You have to find one who is supportive. And then you have to find a second one! So it’s very difficult. And it takes a long time. You end up saying, “I’m going to leave my beautiful home, the things that make me feel good about life, my friends, all this when I’m going through emotional angst, and go somewhere else where I don’t know anyone.” It’s very difficult. In some ways, it can be inhumane.

  I asked about the position of the American Medical Association on medical aid in dying.

  DR. K: The AMA is still debating what to do. They realize that medical aid in dying is unpopular with a large number of doctors, and they’re trying to figure out the ethical position. Based on polling, it’s about two to one in favor. But the AMA is never going to resolve the ethical issues because there are two ethical goods going against each other. You’ve got the ethic of autonomy going against the ethic of maintaining life. We’re taught as physicians how to maintain life, how to help people, and we’re not really taught about end-of-life care. I’d like to see that being taught in medical schools and in residencies. Nothing I say is meant to diminish palliative care and hospice, which are really wonderful, but they’re not always completely successful, and you need another option.

  Death is not an enemy, death is inevitable, and to be afraid of what’s inevitable will blind you from living the life you should be living. And physicians need to realize this. When I was still working with patients, I would tell them that my goal was not to keep them living forever, but to try to keep them as healthy as possible. If they said, “I don’t care what’s going on, I want you to keep me alive as long as possible,” then I would follow through.

  My wife and I talk about death all the time. We even laugh and joke about it all the time, and where I’ll be buried. I was speaking on public television the other day, and I tried to make a joke about death and it didn’t go over very well.

  I asked Roger about the difference between a terminal illness and being terminally ill. He said that having a terminal illness means you have an illness that, if untreated, will cause you to die at some point in time, whereas being terminally ill refers to having a life expectancy of six months or fewer. He describes himself as having a terminal illness.

  DR. K: You’re not worried about things you can’t control. So now I’m sixty-six and feel as though I’m having this wonderful experience of living a second life. I call it my gift of cancer, that I’ve been able to go past the fact that I’m going to die, and to appreciate my life much more. If I die after all my years, that’s not a tragedy. The world isn’t made for us to be here in it. The world will go on without us, and we need to accept that. Once you accept that, life becomes much more beautiful.

  Stella Dawson-Klein

  WIDOW OF MARY KLEIN

  Stella Dawson met her wife, Mary Klein, in 1980 in England, through a feminist newspaper that Mary had worked on and Stella distributed. Stella then moved to Washington, D.C., to help work on the newspaper, and she and Mary ended up living in the same group home there. They were married for thirty-seven years until Mary’s death.

  Their home in Northwest Washington, D.C., is quite near the house where I grew up, on a street of row houses with front porches like my own. Stella is tall and very slender, with short graying hair, and beautiful pale blue eyes that fill with tears as she talks about Mary, their relationship, their marriage, Mary’s illness, and her struggle to find a doctor willing to help her to die.

  STELLA: I’ll always remember Mary walking in the door. She had that very distinctive sort of pageboy haircut. She was with her dog. She always, always had a dog. So she walks in with the dog, this fabulous haircut, a ribbed jacket, and a tent and a fishing pole.

  I thought, Oh, this looks like an interesting woman. And I knew she was a fabulous journalist. Within three months, we’d moved into our own apartment together. When we did, I thought, This was a little rushed, and Mary said to me, “Well, Stella, we’ll move in for a week, for a month. And then we’ll assess. And if one of us wants to move out, we’ll toss a coin.” A month later, we never even discussed it and we never tossed the coin and we were together thirty-seven years.

  I ask her about Mary’s professional life.

  STELLA: Every ten or fifteen years, Mary did something different. She was a journalist for many years. You’ll have to give me the tissues—the tears are coming so
oner than I expected.

  DIANE: Totally understandable.

  S: Yes, she was a journalist and worked for the Cape Cod Times and then The Fairfax Journal. And then she worked as the managing editor at Capital Publications covering Great Society programs on Capitol Hill, which were then dismantled during the Reagan era. During that time in the eighties, she started getting more and more involved in her artwork. She decided to apply to art school, and being Mary, she did everything 150 percent. She was accepted into Virginia Commonwealth University, but she wanted to go to the Art Institute of Chicago. And I said, “But you don’t even have an undergraduate degree in art.” And she said, “I’m going to apply.” So she submitted her portfolio and she was accepted.

  We moved to Chicago, and she worked as an artist for the next twenty years and also did journalism on the side. She did most of her work in exploring language and how it defines and creates identities and how it’s used to marginalize people. Very central to her work is her exploration of lesbian identity.

  D: And during this time, you continued working as a journalist?

  S: I began in radio, then did a bit of TV, and then moved into newspapers and became a journalist for Reuters. I’m now head of communications at a trust fund that’s based at the World Bank. Please, give me another tissue.

  D: Tell me about the first signs of Mary’s illness.

  S: Mary had been preparing a dog for a dog trial—dog training was her retirement job. When we were in Germany, she learned about the sport Schutzhund, which is for German shepherds primarily. The sport requires a very high level of obedience, agility, tracking, and very stylized protection work, pretty intensive. So she’d gone to Minnesota to train with a German trainer out there.

  She’d been there for maybe a month and then drove to upstate New York for the trial. And she called me—this was in July 2014—and she said, “Stella, I’m really, really tired.” And I said, “Well, I’m not surprised, you’ve been away for a month and you’ve had a lot of driving.” And she said, “I’m not sure whether I want to do this trial.” And I said, “Why don’t you just give it a go? It’d be a shame after all the work you’ve done.” So she did the trial, and she said she had no energy, no interest.

  This was completely unlike her. And then Mary began complaining of stomach pains and digestive problems. We put it down, again, to the fact that she’d been traveling so much, not eating well, and had always had problems with indigestion and constipation. So we didn’t think too much of it. When she started having more pain she went to the doctor. She thought she had diverticulitis, which she’d had before. The doctor gave her medication, which didn’t cure the problem. She went back and the doctor basically said it was psychosomatic, and Mary was furious. And she said, “I’m going to get an X-ray, this is ridiculous.”

  So she went and got an X-ray, and that afternoon the doctor who was reading the X-ray left a phone message for her and said to call immediately. And Mary called him back, and he said to go to a gynecological oncologist right away. When I came back from work, Mary took my hand and took me into the living room, and we sat down and she said, “Stella, I think I have cancer.” And I was very British about it. I said, “Oh, don’t worry, you had one tumor removed, you have another ovarian tumor. It’ll be okay.” And she took my hands and she said, “Stella, I know this one’s serious.”

  We spent the weekend researching doctors and made an appointment, and sure enough, it was advanced ovarian cancer.

  D: Did she go back and read the riot act to the first two doctors?

  S: Oh, yeah. But you know, the awful thing is that her abdomen was quite swollen, and she kept saying, “I’ve got to do more exercise, I’m getting so out of shape.”

  D: So, what was done for her after that diagnosis?

  S: I think we saw the doctor on a Monday, and he said he would get her in for surgery the following week. On Columbus Day 2014, she had about a six-hour surgery; the cancer was quite extensive. They removed the uterus and ovaries and part of her colon and part of the peritoneum. She liked to say they stitched her back together with forty-two industrial-size staples. She spent two weeks in the hospital recovering.

  In November, she began chemotherapy, what they called “high-dose chemotherapy” because with ovarian cancer there’s no cure. The best hope is to knock it down the first time, and the longer you can keep it in remission the first time, the better your chances. They gave her very high doses of chemotherapy in hopes of killing the rest of the cancer cells. With that particular kind of cancer, it’s not like having one tumor—the cells spread when you cut it out; they just travel, so it goes to all other parts of the body. So she went through intensive chemo, and it gave her six months before the cancer returned.

  Chemo is terrible, absolutely terrible. The basic thesis of it is to kill off as many cells as you can and then let them regrow, and hope they regrow as noncancerous. The chemo was so terrible. She had multiple blood transfusions, she had blocked bowels twice, she had to have her stomach pumped. They didn’t think she would survive.

  D: Did Mary ever say, “Enough! I don’t want it anymore!”

  S: Not at that point. When she was diagnosed, Mary didn’t want treatment because she knew her condition was fatal. And the doctor said, “Now is not the time to give up. I can give you quality of life.” Quality of life was the driving factor for Mary, right from the very beginning.

  D: Of course, quality of life in the eyes of the doctor and in the eyes of the patient are two very different things.

  S: Yeah, but if she could do chemo and know there might be a week out of the month when she felt good or if, at the end of the chemo treatments, she might get three or four months when she could enjoy life, she would do it. And she did. She did five series of chemo because she wanted to live and she wanted the opportunity to enjoy her life. She did all she could for as long as she could. Then she tried “salvage therapies,” which essentially means the doctors try anything that might work.

  And each of those salvage therapies is more severe than the last. That’s the dogs, in terms of side effects. So after the first two, nothing was working and Mary said, “No more.” She said, “My body is too debilitated. No more.”

  D: Was that the first time you talked about the possibility of medical aid in dying?

  S: We talked about it from the very beginning. From the very first day. At the time, there was no D.C. law. When Mary was diagnosed, she said to me that she didn’t want to go through unnecessary suffering and wanted to have medical aid to end her life. It didn’t surprise me, because Mary was very strong, very independent. And very emotionally clear. Right from the very beginning, she said she wanted access to medication.

  D: And how did you feel about that?

  S: I respected it. I was not surprised, because I knew her. And I knew that agency over her own life, her actions, was core to who Mary was. So I wasn’t surprised, and I supported it, not because I wanted her to die but because it was cancer. That was in 2014. We looked into moving to Vermont. And Mary registered for Dignitas, the clinic in Switzerland. She signed up for Exit International, which provides information on how to take your life.

  Two places where you could potentially get the medication were Mexico and Peru. I looked it up on the map of Mexico City, and it appeared to be a veterinarian you went to. I’m thinking, This is not very good. I think the likelihood would have been that she would have decided to go to Switzerland.

  D: How did your effort begin in D.C.?

  S: Mary had been in contact with Compassion & Choices, and in August 2016, there was a call to action, to write to your council members and lobby, because there was a good chance they would vote on a right to die law. So we both hit the telephones, started writing letters, and Councilwoman Mary Cheh was the first person who responded. Then Council Member David Grosso got back to us as well and said he w
ould meet with Mary. He was very concerned about people with disabilities and the argument that the law could be used by family members who wanted to get rid of them. Mary spoke very eloquently about the fact that you have to take the medication yourself, that you have to be of sound mind in order to be able to get it, and anyone who is not able to make those decisions cannot access the medication. We talked to anyone who would listen. This was in October 2016. They voted to approve in November. And the mayor signed the law in December 2016. Then, of course, Congress tried to overturn it. Fortunately, that didn’t happen.

  D: But you and Mary still had a difficult time finding a doctor?

  S: Mary asked both her oncologist and gynecologist to write the prescription for the medication to end her life. But neither would. Right from the very beginning, she had said, “I will do everything I can to live if I can have a decent quality of life. But when the time comes when you can’t do anything more, I need your help.”

  D: And they both reneged?

  S: Yes.

  D: Mary must have been furious.

  S: Yes. She started setting up appointments with medical ethicists at various hospitals to get the doctors and hospitals on board with the understanding that medical aid in dying is an option they should offer to their patients. A lot of the problem was not only that they weren’t willing to do it, they were just plain ignorant. All of their training was to cure. All the impetus was to give the patient more drugs, because there is an infinitesimal chance that they will live an extra month. And Mary realized it was an educational process, and that became her next task, after getting the legislation through—she now had to educate the medical profession.