by Diane Rehm
Chris is the designer, and the surviving spouse of Terry Sheldon Stein, who died six months before this interview took place. Chris is tall and slender, with a bearded and mustachioed face.
I ask how he and Terry first met.
CHRIS: We met in East Lansing, Michigan, where he was an associate professor of psychiatry and I was a master’s student, but we were only eight years apart in age. Terry was on the faculty of the medical school, a psychotherapist, was very involved in gay and lesbian cultural politics for many years, working on the pathological diagnosis of homosexuality, and determined to remove the last vestiges of that classification.
We had a very rich thirty-eight-year relationship together. He, or we, had a son, Martin, by a previous marriage. I met Martin when he was eight years old, and together, we jointly raised him with his mother and her husband. And that was a very big part of Terry’s identity, being a dad, as well as a grandfather, now that Martin has four children.
Terry took an early retirement and we moved to the Bay Area because of its cultural politics, but also because Terry was very involved in Zen Buddhism and very attracted to the Zen communities here.
DIANE: What were the first indications that Terry was not well?
C: In the summer of 2015, Terry was diagnosed with mild cognitive impairment.
D: How did that manifest itself?
C: Well, Terry was a psychiatrist, and a certified neurologist, too. And there was a period of time when he kept asking questions over and over again. Or, he would ask a question and lose his train of thought. And we both thought, Well, this is odd, but maybe we should have it looked into. We were sort of cavalier about it. But the tests came back showing a clear diagnosis of low-level mild cognitive impairment. And one of the big challenges with that was that Terry’s mother died of dementia, and he was very determined not to slide into dementia. But when it comes to the end-of-life option, dementia or psychological impairment prohibits one from accessing it. And he was very upset about that. One of his biggest fears was descending into dementia without having the option of choosing not to.
D: So then, he was diagnosed with another condition?
C: Right. A year later, almost to the day of the first diagnosis, he was diagnosed with advanced bladder cancer, and it had metastasized widely, which had not been immediately apparent when he started treatment. I would never use the term relief, and yet it’s hard not to. He was relieved that he would have a medically appropriate diagnosis if he needed, so that he would not suffer through either of his illnesses.
D: I understand you and he had already talked about medical aid in dying and that he’d had a friend who had died, and he was determined that he would not die in the same way?
C: Right. That’s true. He was very, very clear about the importance of having agency in making his end-of-life choices. He had several friends who had looked at the option, including Lillian Rubin, the author and psychotherapist. She was extremely clear about her end-of-life wishes, and Terry was one of her major supports along the way. He learned a lot about the process and became committed to supporting Lillian in her choices. He also developed an interest in seeing the limitations decrease so that people with a broader range of afflictions could access the end-of-life treatment.
D: When did Terry contact Compassion & Choices?
C: Early on. After his diagnosis of mild cognitive impairment, and after his diagnosis of bladder cancer. He had very helpful conversations with the folks at Compassion & Choices, but the only option they were really offering or encouraging was to withhold liquid and forgo food. He didn’t find that personally helpful.
D: Dr. Marquet, tell me about the first interaction you had with Terry.
DR. MARQUET: I came here to the home to meet Terry and his family, Chris, and whoever else had wanted to be present would have been welcomed. I’d like to address the amount of prework that happens before a physician engages with a patient about medical aid in dying. Chris has mentioned mild cognitive impairment, and we all know that the lack of capacity excludes a person from medical aid in dying. It’s a very important point to consider and, as a physician, to absorb. I had to meet Terry to really know the situation and to know his heart. And to know his cognitive status, though it was clear from the record that Terry absolutely had the full capacity to understand his medical condition, to be driving the boat of his care, to weigh treatment options, and to understand their consequences. He was very articulate with his cancer physician and had multiple visits with his palliative-care team.
Before I met Terry, I had the privilege of learning about him from his medical record, which was very in-depth, because he was a very intellectual man who did not take anything for granted. I assume, given his mild cognitive impairment, that he did well with laying out facts concretely. You could see from the way clinicians were documenting conversations with him that he was relying on concrete facts as guideposts. So I was not surprised, when I met Terry in person, that we had a very rich and long conversation about his journey with his sudden illness. When patients are talking about what it’s like to live with their terminal diagnosis, I like their being able to walk me through that journey with them. Terry was really hoping that the treatments would provide a medical cure. He had gotten multiple opinions to determine the best surgery, and he did go through extensive surgery. But several months after his surgery, his cancer had metastasized to the liver.
C: And to the bone.
DR. M: His bones. That was very painful. I remember some of these details because Terry was giving me the gift of walking me through what it was like for him to hope for more time. Cancer is a scary diagnosis, but the doctors are telling him that, with treatment, he can have more time, and he wanted more time. But then it became clear that his cancer was not curable, and his treatment options were very limited. A high treatment burden to a low chance of providing more quality time. Often, as I work with people interested in medical aid in dying, there is some guiding sense of self, and Terry absolutely had that. He was able to articulate to me so well why he didn’t like the phrase being in charge, because as a Buddhist, he didn’t think being in charge was important; it was more being open to the reality of what was happening to him. In making the choice from the options available to him, there was one that resonated. It was medical aid in dying.
D: And, Chris, to what extent did you and Terry deliberate about that choice?
C: It was apparent that it was very important to him to have that alternative. I would say we talked about it a lot, but he was so clear and articulate about his wishes, and the palliative-care team supported him. They had seldom dealt with someone so articulate and straightforward about what they wanted and could talk about their feelings, too, not just the nuts and bolts.
D: Dr. Marquet, what kind of training did you have to be involved with medical aid in dying?
DR. M: This work is new. We’re only two years in. When I met Terry, I had one year of experience with medical aid in dying. Overall, I’ve had twenty years of experience, and working with the dying requires a special skill set. I worked ten years as a hospitalist, dealing with acute medical crises, and another ten years in palliative medicine and hospice care. Both have influenced me and given me confidence. Doing the work well has also required experiential learning. When I met Terry, I was working for Kaiser, and Kaiser has done a great job at providing education to the practitioners who opt to participate. Just as patients have a choice to take advantage of medical aid in dying, so does each person on the medical side. Kaiser as an organization opted to participate and offer medical aid in dying, but then it was up to the physicians, the nurses, the hospice groups, to say whether they wanted to know more and potentially work with patients one-on-one.
I was one of the people early on who received training about both the law and Kaiser policy, some talking points, the required elements, as well as acces
s to an end-of-life-options patient coordinator, who is considered Kaiser’s expert in medical aid in dying.
As a physician, I find it very interesting that in most encounters with patients, we decide together what’s best for them, and in working within the context of medical aid in dying, there is a third party—the law, in a sense, the state. And I can speak for the whole team that worked with Terry, we wanted to be absolutely compliant with the law, but it makes things a little jerkier—at one point, I had to ask Chris to leave, because there’s a requirement in the law to speak privately one-on-one.
D: Even though Terry and Chris were married?
DR. M: Absolutely. It’s required in the law that there be a private moment, one-on-one, to confirm that this is indeed Terry’s own wish. I used that time to ask if there was anything he’d like to share with me without the presence of his family, not only whether it was really his choice, but about hopes and fears that he didn’t feel comfortable sharing with his family.
D: How many patients have you seen through the entire process?
DR. M: I’ve worked with probably fifteen patients now. I’ve attended one death by medical aid in dying, but as one of the physician leads, I’ve worked with more than that as a support to my colleagues, and as an educator to my colleagues as well.
D: Chris, was Dr. Marquet with you and Terry on the last day of Terry’s life?
C: At that point, Dr. Marquet had stepped back. We had worked together to obtain the medication and to understand its use just a few days before his actual death. And Terry’s last day was one of the hardest things in this whole process. But one of the most satisfying things is that you know when you’re going to die. You make the decision about when that seems right in the context of your family, your friends, and your loved ones. Terry was very intent on not suffering, and also not making those around him suffer in the process.
D: Who was here with you on the day Terry died?
C: There was a whole support team to be with both of us. Terry’s son, Martin Stein, was here and held Terry’s hand until the end. And three very good friends, one of whom is an internist, one of whom is a retired hospice nurse, and the third person, who was his closest friend. He had the people who meant the most with him. The day of Terry’s death is hard for me to look back on. He never wavered in terms of knowing what he wanted, and I shared his opinions about the end-of-life option. I support it fully, and yet it didn’t make it any easier, the actual death. I’d ask how he was feeling, and he said he was okay but that he couldn’t talk much about what was going to happen because he was afraid he’d lose his nerve. I never saw him waver, so his answer was a bit startling. And he didn’t. He didn’t lose his nerve.
The Honorable Selwa “Lucky” Roosevelt
CHIEF OF PROTOCOL IN THE REAGAN ADMINISTRATION
Selwa “Lucky” Roosevelt was born in Tennessee, the daughter of Lebanese Druze immigrants. She spent her youth there, went to Vassar College, and just before graduating, met Archibald “Archie” B. Roosevelt, Jr. They met on a Saturday, and he asked her to marry him on Sunday. They were married three months later. They spent their first years together overseas, then returned to Washington, where they lived for four years. Various government assignments took them overseas again, but they finally settled in Washington, D.C. They were married for forty years, until he died in 1979. Lucky Roosevelt and I live in the same condominium and have become good friends. This interview took place in her beautiful and comfortable apartment, where there are many photographs of her and her adored husband. When we spoke, Lucky was about to celebrate her ninetieth birthday.
DIANE: Lucky, I understand your mother lived in this very building prior to your moving here.
LUCKY: That’s correct. She came from Tennessee to be with me, and my sister was in New York. The two of us looked after her, but then in her last years, she couldn’t stay in the apartment. We moved her to an assisted living facility, and then when she developed dementia, we had to move her to another section of the facility, where she died.
D: I know that you testified before the District of Columbia Council when they were considering the medical-aid-in-dying measure. Was the death of your mother, and how she died, a motivating factor in the development of your own thinking?
L: Absolutely. It was, for me, such a tragedy and such a lack of dignity. This is a woman who had done so much in her life and was such a loving and productive person. She died at ninety-eight, but she had these terrible four or five years before she died. And this is what really devastated me, to see this incredibly productive, wonderful woman disintegrate. It made me so anxious to do anything I could to help other people avoid going through what I did with my mother. I have been very conscious of the importance of dying with dignity ever since.
D: Did you and your husband ever talk about this?
L: Well, yes, we did. I was quite young when he died, but I was spared so much. He died of a heart attack in his sleep. I didn’t even know it was happening. And the next morning when I woke up, he was gone. Of course, it was devastating, that sense of loss was enormous, but I always think what good fortune for him that he had a painless death. It was God’s gift.
D: Can you summarize for me what you said to the D.C. Council?
L: Basically, how important I thought it was for people to die in—I keep using the word dignity, which is so important to me and to everyone else, I guess—to not die in an indescribably awful way, which is what happens when people are not allowed to die when they want to die. My mother told me before she became completely demented, she said, “It’s time for me to go.” She knew that it was time for her to go, and she asked me if I could help her. And I knew I couldn’t because I knew the law. And I knew she wouldn’t want me to end up in jail. I told her that, and she was very upset with me because she felt that I should help her go. But I didn’t know how to. I’m so grateful that now there’s a possibility of helping others. I was really disappointed that every single one of the doctors who testified was against passage of the law. We have every right to make our own decisions. Why should anyone else make those decisions for us?
D: What about helping yourself?
L: Well, I don’t know what’s going to happen to me yet, but I plan to make it as— I hope I can make it as swift and meaningful as possible. I want death not to be a horror story for me. I’ve been blessed with good health, and I don’t know how it’ll end, but I’m hoping that by the time I’m ready to go, the laws will be changed all over the country and people won’t have to fly to Switzerland and other places to be able to have a death that one could live with.
It’s so hard to talk about it, really. But it’s essential that this country be awakened to the importance of this. I think it’s wonderful what you’re doing, Diane. I really admire you for that. I think this is the way to go. The group Compassion & Choices has the right attitude and the right cause. I believe in it.
D: Lucky, I have my own ideas of what would be a good death. I wonder what yours are.
L: A heart attack would be my preferred way of going. But that’s not likely. I think I would want to be able, at the point of death or possibly when it was not so far off, I would like to be able to say to my doctor and to my family and everybody who cared, that it’s time for me to go. I would like to have that choice, and I would like to be able to take a medication myself, some pill or whatever is the right thing to do, and I would like to die that way. I feel that very, very strongly.
D: Have you actually talked with your doctor about what you’d like?
L: He’s not very receptive. I’m going to have to work on him. I have told him that there’s a list of things: no resuscitation, no this, no that. I don’t want any emergency measures they do in the hospital. I refuse to go to a hospital that doesn’t allow you to die without all those machines. I told my doctor that. He has to take me to a specific hospital.
L: He would be willing to put me in the hospital that doesn’t have to have those terrible things that they do to people to keep them alive when they’re half dead. I don’t want any of that. I would prefer to die in my own home, in my own bed, if that were possible. I’m hoping I’ll have nurses and people to look after me if I’m sick. You never know. It’s so hard to plan for. You don’t know where you might be, what might be your illness that would be the cause of death. The worst thing is dementia, which Mother had. But she knew that it was time, and she knew things weren’t going very well in her mental state. I’m hoping that I would know.
D: I feel the same way. As a matter of fact, I have told my children and my grandchildren that what I would like to have is a gathering in my apartment and for everyone to be cheerful and loving. And toasting each other, and then I would quietly go off to my bedroom with my husband and children and grandchildren and say goodbye.
L: That would be the ideal way for me. You described it perfectly. That couldn’t be better. And I think it’s so cruel of the legislators and the people who oppose this. They don’t understand.
D: What is it you think they don’t understand?
L: They don’t understand how important it is in your own soul, your own feeling, that you want to go, the way God intended you to go. I mean if you’re religious, and I’m not particularly, but if you are religious, you must believe that God didn’t intend you to suffer needlessly, and that you should go when the right time comes. Now, as you know, various legislators are motivated by all kinds of religious beliefs and other things. They don’t see the tragedy and the incredible pain associated with not letting people go when they are ready.
D: Tell me how you felt when you learned that the law in D.C. had finally passed.