When My Time Comes

by Diane Rehm

  D: I gather he lived independently.

  A: Yes. He was about three miles away, which was actually very convenient to my son’s school. He picked him up several days a week at school, and they were the best of buddies.

  D: How quickly did the disease progress?

  A: Well, from what I could see, it was not progressing all that rapidly. But apparently he started to fall. And those falls made him very scared, because he loved living independently, and because he had, for a long time, planned to control the end of his days. Parkinson’s is not, as you well know, a way that you want to end your life. He had a plan, and he knew that if he fell and broke something and ended up in a nursing home, he would not be able to implement the plan. Those falls were a ticking clock for him. In fact, the night he first attempted to end his life, he wrote me an e-mail that said, “I just had my fourteenth fall, the worst yet, love you so much.” And that was it. And I thought, Oh dear, fourteenth fall doesn’t sound good. He was sounding fatalistic about that fourteenth fall. It was also coming up on VE Day, and he had been a POW in Germany. So I think, being a dramatic man, he chose a day to die that was meaningful to him.

  He had collected pain pills, and he took quite a lot of those and they didn’t work. Then when he didn’t die, he moved to Plan B, which was a box-cutting knife. But when you have a terrible tremor…It didn’t work.

  D: He thought he could cut his wrist?

  A: Yes.

  D: Did he tell you he was going to do that?

  A: No, no, no. He did not tell me any of this beforehand. I got his e-mail and time went by. Usually we were in touch once a day, and after too much time had gone by, my husband and I went to his house—this was about thirty-six hours after I received that e-mail. He was lying on his sofa and explained what he had done with the pills and the box cutter. He actually made a joke, something like “I tried these things and who knew that they wouldn’t work?”

  D: So he must have had a Plan C in mind?

  A: Yes. He had a gun in the house, which he’d had since I was a child. As we later discovered, that was Plan C. After helping him freshen up and having some food, we left him.

  D: He asked you to leave?

  A: Yes. It was about 1:00 a.m. at that point. And he said, “Good night, bye.”

  D: Did you have any idea what he intended to do next?

  A: He didn’t say anything, but there’s no way he would have started down that path without intending to finish it. I can’t say I’m surprised that he was successful in the end.

  D: He used the gun to take his own life? That must have been awful for you.

  A: It was terrible. But he had done what he wanted to do. I don’t get a say about what happens. He was a resourceful man, and as I say, he knew what he wanted to do. And I support his choice. He knew what made his life worth living, and he knew what wouldn’t have made his life worth living.

  D: Did he ever seek help—from Compassion & Choices, for example? Did he seek help from his own doctor, or express to his doctor that he didn’t want to go on living this way?

  A: Not that I know of. Maybe there’s something about a daughter-father relationship in terms of his protecting me a little bit from knowing where his thoughts were. I did get e-mails that said, “The just-in-case folder is in the so-and-so.” But I’d gotten those all my life.

  D: Had you always been an advocate for the right to choose, even before your father’s death?

  A: Absolutely. The General Assembly of the Unitarian Universalist Church voted to support it back in 1986. And let me be clear about that: it means a person in failing body, sound mind, making the choice. We’re big on choices. So I can’t remember ever having a thought that the right to choose wasn’t a legitimate thing. Who needs somebody else to paternalistically say what I need to do? Now, I’m not talking about a permanent solution to a temporary problem. If somebody is depressed, he or she needs treatment. But there’s no going backward on the deterioration of Parkinson’s. It goes one way. I can’t blame him. I can’t question it.

  D: You said, when you were on my program a few years ago, that the right to medical aid in dying is the next civil rights issue.

  A: I think that’s true. As I understand it, the origin of not being able to take your own life is that the king owned your labor, and if you took your life away, you were decreasing the king’s wealth. Well, we don’t live in a monarchy. I think the laws today are a reflection of religious beliefs. And that doesn’t feel right to me. No religion should have the standing to take away choices, reasonable choices, from people who don’t belong to that religion. If this law were in place in Maryland, my dad wouldn’t have had to pull out a gun and shoot himself. My husband wouldn’t have had to find his body the next day.

  When I have testified in Maryland (on behalf of Death with Dignity), there are legislators who say we wouldn’t need this law if we had free guns. And I said to one of them, “My dad almost moved in with us. That could have been my fifteen-year-old son finding his body. Don’t talk to me about widely available guns being a solution to this particular problem!”

  D: Did any of the legislators respond?

  A: You know, certainly there are legislators who understand the value of this, and there are legislators who are doctors. And let me say, I am a tremendous supporter of hospice. I believe in the support that chaplains and palliative care can give people. I want people to get all the support they can, and then at some point, they make their choice. Maybe that day they decide to shorten their life, but that’s a day they can be with their family, rather than saying, as my dad had to, “Bye guys, love you, time to go now.”

  D: Suppose several years down the road you find your death is likely to take place, say, within six months?

  A: I’m not someone who sees value in intractable pain. That’s just not who I am. If I am in intractable pain, and the doctors have done what they can do with some likelihood of success, there’s that expression: Are you prolonging life or are you prolonging your death? I would definitely consider taking action. You know, my dad was very brave. Not once, not twice, but three times, he did what he could to get to where he wanted to go. I think if Maryland doesn’t pass this law, if D.C. undoes this law, I think I would move to California. Ironically, that’s where Brittany Maynard had to move out of. But I want my family around me, and I want it to be peaceful enough that there is something to share.

  D: It would mean that you would have to leave your beautiful home, you’d have to leave the place where you and your family have been so happy for so long. What would that mean to you, if you had to move to take up residency somewhere else, just to have the kind of beautiful death you wish for?

  A: I would be enraged, because who is somebody else to tell me what I can and cannot do with my own life? I strongly believe the law should make choices available. It could be that this cancer comes back and I’m gone before you know it. Or, it could go to my bones, become intractable. A long, drawn-out process is where I’m not having a quality of life.

  I’ll tell you another legislative comment that infuriated me. This legislator said his whatever was expected to die in six months. She entered hospice, and it lasted a very long time. He said, “I got so much out of her last days, my kids got so much, all of the family got so much. And,” he said, “she lived much longer than the expected time.” And I wanted to say to him, “How did you become the center of this story? How did you and your children become the center of this story of this woman’s death?” Who knows what kind of pain his mother or wife or whoever it was might have been enduring as she lived?

  I think he said she lived ten years, to which I wanted to say, “Was that nine years and 300 days that were fabulous? Or something else? What was fabulous?” We’re not talking about something that’s just bizarre and outlandish. We’re talking about something 65 percent of the population sup
ports.

  D: It seems that there is a widespread fear of talking about death. Everyone wants to push it away and pretend that death is not part of life.

  A: I have kind of a fun story on that. I was doing a sermon for a class on death with dignity. And I was the oldest person in the room by twenty years or more. When it came time for the critique, one of the young ones said, “Oh, I think this is very important for your generation.” And I wanted to say, “You’ve opted out?” And the truth of the matter is that all three deaths that have received enormous attention in our society and changed the discussion—Brittany Maynard, Karen Ann Quinlan, and Terri Schiavo—all three were women in their thirties, probably very close in age to the woman who told me it was my generation’s problem to think about this. It’s really worth remembering that none of us gets out of here alive.

  Father John Tuohey

  A ROMAN CATHOLIC PRIEST

  Father John Tuohey is the priest at St. Charles Borromeo parish in Pittsfield, Massachusetts. He flew to Washington to speak with me about medical aid in dying, or, as he terms it, “voluntary taking of life.”

  He is a slight man in his fifties, very soft-spoken, but firm in his Roman Catholic beliefs.

  DIANE: Father Tuohey, in as clear and concise language as you can, please tell us the Roman Catholic Church’s position on medical aid in dying.

  FR. TUOHEY: Certainly. The Catholic religion is a religion of faith and reason, so we have two dimensions, the first of which is the faith, which would be binding on us Catholics and accessible to all Christians. Essentially, God is the Creator and we are the creatures, and we read in the scriptures—for example, Isaiah—the world was created to be lived in. And in Genesis, we have dominion and we’re supposed to be fruitful and multiply, which means to take care of the garden and to fill it with life. And so, from our perspective, God as Creator creates life, but does not take life, and hence we would not have the authority to voluntarily take life. Death is a natural part of life, and we should trust the God of creation. Since God does not take life, it would certainly not be in our purview as creatures to voluntarily take life.

  D: So, in your mind, it is the word of the Lord that you are quoting, and ascribing your position to?

  FR. T: Well, it’s the word of God, but that’s also where reason comes in. From our faith perspective, taking life is contrary to human nature. Human nature is inclined to progress and to live and to be social beings. Voluntary taking of life is the opposite. It withdraws me from society. I’m naturally inclined to life and to seek life and to build the quality of my life. And so taking life is seen as contrary to that which we call the natural moral law, but which is also informed by scripture.

  D: If the quality of life no longer exists in the mind of the individual, then what should be the role morally, ethically, of the Church and of you as a Roman Catholic priest?

  FR. T: That’s a very excellent question. In the Catholic tradition, we would say that as your quality of life diminishes, your obligation to pursue and maintain life diminishes, and so we begin to wean ourselves off things that would prolong our life. When we’re just maintaining life, that is, not living the fullness of life, people would be perfectly allowed to begin to wean themselves off medications. For example, they may decide ahead of time that if such and such trauma should take place, they don’t want to be put on a ventilator. One Jesuit back in the fifties made the comment that he was concerned that people might think there was such a thing as a “Catholic euthanasia,” precisely because, as quality of life diminishes, we’re allowed to say no to medical interventions that would prolong that life. As the quality of life diminishes, people can say, “You know what, I’m not going to go there anymore.”

  D: But what about medical aid in dying?

  FR. T: That’s where we would draw the line, the voluntary taking of life. It’s one thing to say that my quality of life is diminishing. It’s another thing to step in and take over the process. It doesn’t solve any medical problem. It doesn’t treat pain. Reports and the statistics change year by year, but only about 15 percent of hospice patients who get medication report that they’re still in great pain.

  And really, what it addresses is an existential sense—and the studies show this as well—the fear of becoming dependent and losing one’s dignity. And those issues, I think, can be addressed through interpersonal relationships. The patient doesn’t need medication for them.

  D: But suppose someone had reached a point where there was no hope of resuming quality of life, and that patient asked for medical aid in dying. If he or she were a parishioner of yours, what would you say to that patient?

  FR. T: I have seen that. I remember one example in particular, a woman on such a high dose of fentanyl for pain relief that she was toxic. But there is palliative sedation that’s amenable.

  D: Palliative sedation would mean that the individual is kept barely conscious?

  FR. T: Right. Depending on the level of pain, yes. Of course, if that’s the only way to treat the pain, then we would treat the pain and the person would die naturally. Because, if the person is in that much extremis, taking the barbiturates is going to be extremely difficult for them as well.

  D: Of course.

  FR. T: They’re going to want some palliative sedation anyway. Why not just run with that? Why take that next step?

  D: What is the difference, then, if you’re offering that kind of extensive palliative sedation knowing that it will indeed end that person’s life? You’re helping that person die, aren’t you?

  FR. T: Yes, and that’s why terminology is difficult. Aid in dying can be a good thing, as well as the kind of approach we’re talking about. Unfortunately, here’s where we start to get into methods of moral decision making. If you’re not a casuist, you’re going to look at me and say, “You’re just playing with words, you’re splitting hairs.” But if you are a casuist, you’ll say, “Oh, yes, that makes perfect sense.” If you’re a consequentialist, you’re going to say, “Well, you’re going to be dead anyway; why not make it as smooth as possible?”

  On that level, we really have to agree on a moral approach to how we think these things through. As a matter of public policy, we can probably find some common ground. But since there are so many different ways of approaching moral issues, and we don’t agree on a single approach, our approach would be that the person is dying as an effect of treating their pain through palliative sedation, as opposed to dying because they took a barbiturate that sped up the process.

  The Catholic approach is that there’s a difference between doing something that directly causes a person’s death, and dying as a result of something that we’re doing to try to help the person.

  D: Have you spoken about this issue within your own parish?

  FR. T: Yes, it does come up. The chaplain at the local hospital (there’s no Catholic hospital in the area) has called on several occasions, mainly about issues such as “Should we put Dad on a ventilator because his breathing is failing? Or is it okay for us to take him off? He’s on a seven-day regime of antibiotics, we’re on day five, and nothing’s getting better, do we have to go two more days of antibiotics or can we just say, ‘He’s not getting better, let’s stop dragging it out?’ Because the antibiotics are not going to change the course…” These questions do come up.

  D: So, you are not against the idea of passively allowing someone to die? You are opposed to the idea of actively helping an individual die?

  FR. T: Yes, the only nuance I would suggest is that sometimes passive could mean not doing something that ought to be done. What I would be in favor of is not doing anything that would interfere with the natural course of the person’s dying. If I have a major heart attack right now, you could passively say, “Oh, well,” but you’d be in trouble for not trying to rescue me. Just because it’s passive doesn’t mean it’s okay. If the perso
n is in the natural course of dying, then interfering is not necessary and not helpful at all.

  D: Several months ago, we spoke with Dan Diaz, whose wife, Brittany Maynard, moved from California to Oregon, as she tried a number of different approaches to continue to stay alive. But, in the end, she did take her own life. Dan Diaz is Roman Catholic. He told us that his research tells him that many Roman Catholics support medical aid in dying. What’s your view on that?

  FR. T: I’m not familiar with those statistics. I don’t know what studies he’s citing. Just a few years ago, aid in dying was defeated in Massachusetts. Massachusetts is a fairly Catholic state, so I don’t know if those statistics are accurate.

  D: The issue has come up again, of course, in Massachusetts, where I just testified a few weeks ago before a committee of the Massachusetts legislature. I don’t know whether that bill is going to pass. I do know that they’ve tried to pass it four or five times. There seems to be greater hope this year that it will pass.

  Tell us about your clinical work back in Oregon, and how you approached end-of-life issues there, where there is a right to die law.

  FR. T: As part of my job as the endowed chair on the medical faculty, I made rounds in the ICU every day, which is where a lot of the end-of-life discussions would take place, and spoke with the intensivists and the residents. But as a Catholic institution, and as a hospital, we didn’t have to deal with it directly, though we would have to deal with it in our hospice.

  We didn’t have inpatient hospice, so it would be in people’s homes, and our stance was that if you’re thinking about voluntarily taking your life, we want to know about it, because perhaps there’s a symptom that we can address. One thing I think we do have to accept is that aid in dying is in many respects a last resort. Taking one’s own life in a case of terminal illness is not one’s first choice. So, is there something that we can help them with? Because more people get the prescription than actually use it. You would rather not do it, so how can we help you not do it? That’s our approach, and it’s very effective. But even if you decided you wanted the prescription, we could not write the prescription. And we wouldn’t go pick it up for you. If you have it in your drawer next to your bed, that’s where it stays. We couldn’t be there when you took the drugs—and this was always a challenge, because people felt they were abandoning their patient. But their presence would be considered assisting them, and that’s really beyond our mission.