When My Time Comes

by Diane Rehm

  D: As I understand, you did have a patient come to you and ask for medical aid in dying. Tell me about that experience and how you responded.

  DR. P: I think that was one of the most moving experiences in my life, for the following reasons: I had promised this patient that I would be there to the end for her. That was our agreement and a deep, sacred part of my journey with her and my other patients. And when she asked me, in a flash I thought, Wait a minute, I promised to be there with her until the end and now she’s asking me for something that I would find very difficult to do.

  D: Do you remember her words?

  DR. P: Not exactly. I think she said she wanted to explore how I felt about physician aid in dying, and whether in the course of her illness and eventual dying—she wasn’t asking for the prescription at the time—I would be okay with writing the prescription for her. Before I answered, I wondered how I might honor my commitment to her to be present yet at the same time not do something that I am not comfortable with. So I told her that perhaps there are other physicians in my practice who are okay with writing these prescriptions and that I could refer her to another person when the time came. But I would still continue to be there with her. She did ask if I would be comfortable telling her why I have concerns. I usually try not to put my own beliefs out there, because I don’t want the patient to be affected by my opinion. But in this case, I felt comfortable doing so. I shared with her my sense that, from my many experiences in caring for people as they approached death, if people were open to mystery and to the unknown, so many wonderful things might happen. Not that I want to sugarcoat the process.

  But I felt that by taking a more medical approach, maybe the opportunity for the unexpected would be shut out. What if someone takes the medication, and then what if she hadn’t and something good might have happened to her? I was very open about that with her. We agreed to disagree. It was a lovely conversation.

  A few days before she died, I did a house call. I walked into her room and she was smiling and she said, “You were right.” I asked her what she meant. And she talked about a very personal thing that had happened in her family that got resolved and said that maybe if she hadn’t been here it might not have happened. And we just sat in silence in that moment. So while I understand it’s legal and people can make the choices they need to make, what I would like to convey in this interview with you, Diane, is that we, as a culture, and particularly the baby boomers—we want control. I mean I do, too. We all do. We want to have our say. If we don’t want to be in a nursing home, we don’t want to be in a nursing home. I think making the process legal is one thing. I have some concerns about how it’s being interpreted.

  D: How do you feel about your colleagues who do physician aid in dying, who respond positively to people who are suffering from pain that palliative care cannot alleviate? Many palliative-care physicians acknowledge that there are times when it cannot relieve all the pain the patient is feeling.

  DR. P: Different studies show that one of the main reasons for the request for aid in dying or euthanasia is actually spiritual or existential distress, and unfortunately, people often think there’s nothing we can do for that. And I disagree. It’s obviously an area I work in. I think we can address spiritual and existential distress. We’re a very fix-it society, and so some of these questions about physician aid in dying have to do with a medical solution for these issues. There isn’t a pill one can take for spiritual distress or existential distress. But I think that working with chaplains and other spiritual-care professionals can help alleviate that kind of distress.

  There’s a workforce issue in palliative care. My colleagues and all of us in health care are working in a system that increasingly asks more of us, placing a burden on the time we have. I think we need to ensure that every single palliative-care physician, nurse, chaplain, social worker has adequate time to fully address the suffering of a patient. I think the requests [for medical aid in dying] would decrease if my colleagues were given adequate support and staffing to be able to fully address patients’ needs. I have no negative judgment about my colleagues who feel that [medical aid in dying] is in the best interest of their patients. But I haven’t met a single colleague who feels totally comfortable with it. Even in states where it’s legal and they write prescriptions for it, nobody is 100 percent comfortable with writing the prescriptions.

  D: It’s so interesting that in the twenty-two years that medical aid in dying has been legal in Oregon, one-third of the patients who’ve asked for and received the medication have not used it. They decided they’d rather go through the process, the journey, the mystery. But those other two-thirds have felt, as my husband did, that since he could no longer use his hands, he could no longer feed himself, stand on his own or toilet himself, that he had not only lost what he believed to be his dignity, but that he was no longer of use to society. He told my daughter, who is a physician, that he was ready to die, that he no longer had any joy in living. He had stopped reading, stopped watching television, and he slept most of the day.

  Now I wonder whether his wish to die should not be taken as seriously spiritually as someone who agrees with you and wishes to plumb the mystery. Because John could not receive medical aid in dying, he had to starve himself and go without water or medication for ten days, until he died. I as his wife could do nothing but watch him suffer. And I could see that suffering on his face, though he never cried out. So I find myself wondering whether that desire for a physician’s assistance is equally worthy of the honor of which you speak, as is the honor that one should receive as an older person, growing older and weaker.

  DR. P: Thank you for sharing that very moving story, Diane. At some point in our life, we’re all going to say, “I’m done and this is it.” And absolutely, we should listen to that. I completely understand what you’re saying, and part of me says, “Yes, when someone might be at that phase, what would be wrong with invoking that law?” But I think I’m looking at it not from the perspective of an individual case, but as an aspect of our culture and perhaps other cultures—a rise in loneliness and detachment. In health care, including in palliative care, it’s even more prominent, where clinicians are stressed and overworked. What people desperately need is to be heard.

  I wasn’t privileged to be at the bedside of your husband or with you during that time, but when someone says something like that, Diane, “I’m done, I want to die,” many clinicians unfortunately are not trained to sit and listen to the pain that is at the root of that statement. So they say they can’t do anything about it, or they offer to write a prescription for conscious sedation. And that’s a person’s choice, it’s legal. But are we forgetting about the other options? Are we overmedicalizing dying by saying, “Oh, you’re at that point, so here, you can take these medications if you request them”? It may be the answer, for some. But I think another answer is to honor that time, to sit and listen and to train people to be present, to support families, to understand that the path isn’t easy. Even taking those pills is not easy.

  D: I want you to know the personal journey my husband went through. His doctor was very caring, and even in the care facility, he sat with John for long periods. He sat with John because he respected him and wanted to be of help to him, I think spiritually as well as physically. I am wondering whether you believe the American Medical Association is going to change its position on medical aid in dying as did the California Medical Association, the Oregon Medical Association, and Washington State. Three and perhaps other associations took a neutral stance, and that was their way of dealing with physician aid in dying. I wonder whether you see that happening at the AMA?

  DR. P: I know that the position of neutrality for a number of organizations was well intended, in the sense that there are some physicians who are in favor of physician aid in dying and see it as a medical intervention. And there are many that are not. So these organizations are prese
nting physicians with both types of opinions. But it goes both ways. The physicians who are in favor of [aid in dying] are supported and are given adequate resources. But physicians who have ethical conflicts should also be supported, and not be pressured into support. I would hope that the AMA in its deliberations would look at what endorsing a law does to society.

  D: And what do you think it does to society?

  DR. P: I mentioned to you that I have spoken in countries where euthanasia is legal. I’ve had the opportunity to share fairly deeply with clinicians in those countries. I’ve heard stories. And I’ve seen in other countries, when people start saying, “I’m done with life, enough,” they say that that’s enough of a criterion to give them euthanasia. That’s what I’m talking about. Do I think that might happen in this country? I don’t know. I hope not. But the physicians I’ve been with or the nurses involved with cases like that, nobody is comfortable with it. I think the circumstances you described with your husband, I agree with you that there are times when all our medications may not help a person. But I also know that palliative sedation has been used, and I think it’s been used effectively.

  I know everything is done with a lot of caution and thought, and it’s the same with physician aid in dying. But if it gets to the point that somehow our support of these new laws impacts the way we treat people toward the end of life, I would find that devastating. I hope that we have equal time for both conversations. Should physician aid in dying be allowed in all states? I would love to go back to that question. Have we lost the reverence for people in health-care systems, not just in end-of-life care?

  D: Earlier, we talked about your being raised in the Roman Catholic Church, and your advisory role in that church. For you, then, does medical aid in dying truly violate everything that you believe in?

  DR. P: That’s a very personal question. I mean I can answer, in a sense that there’s an assumption that because I’m a Catholic, I’m going to see something a certain way. I told you at the beginning of the interview that I actually have very broad beliefs, and very broad influences. First of all, the project that I was involved in with the Vatican is not just for the Church. It was actually a multifaith, as well as a secular, initiative. But you ask if this violates what as a Catholic I believe in. I’m a member of a secular order, Discalced Carmelites, and that’s very important to me. But I’ve also been raised as a participant in many different faiths.

  The question is, How do I, as a person of all my experiences, how do I feel? Does aid in dying violate my beliefs? Violate is a very, very strong word. I would not be able to write a prescription for someone that ended his or her life. And that’s not because I’m Roman Catholic. It’s because I’m Christina Puchalski, who was raised by a family who gave her the experience of loving life and valuing life and seeing the good in both suffering and joy, and that’s accepting life. To be able to honor life in all its dimensions and not to have anyone feel that somehow they’re less valuable because they’re homeless or because they’re dying or because they have their diapers changed or they can’t stand up anymore, or walk or speak or think clearly. It’s not a question of whether it violates my beliefs. It’s more a hesitancy, a very strong concern I have that the law will somehow continue to perpetuate what I see as a social problem of the lack of dignity or the lack of respect for human life.

  D: That’s a beautiful answer. You talked about palliative care in the sense of dealing with the discomfort, the pain. I’m not talking here about spiritual pain, I’m talking about physical pain, but maybe I am also talking about spiritual pain. If I say to you that my physical pain is so great, my spiritual suffering is so great, that I cannot bear to live any longer, do I define my suffering for myself or does someone else define it for me?

  DR. P: A person’s suffering is their suffering. If you were my patient and you asked me that at the bedside, my response would be to listen. I would ask you to tell me more. I would try by doing a spiritual history, finding out what that spiritual distress or existential distress is about. I would want to know more about social disconnectedness, feeling isolated. And I would certainly do a full assessment for your physical pain and symptoms, and offer you the things I could to help you, not to fix you.

  D: When I die, I want to be awake. I want to have my family with me. I do not want to be so sedated that I do not know they are with me. I want to hug them and kiss them and tell them how much they mean to me. I wonder what your own idea of a good death would be.

  DR. P: I don’t actually believe in that concept of a “good” death. I don’t have any expectations, because I have learned from my own life, and from making this journey with others, that people change. We don’t always know what we want, and this gets back to our generation of wanting to control everything. What you say today, what I say today, may not be what we say when we are facing our deaths. When it really comes down to it, I don’t know what I’m going to say. You don’t know what you’re going to say. We need to be open.

  D: I guess it’s what I would wish for.

  DR. P: Yes. There’s such freedom when people let go of these plans, and such joy that can come into their lives. I would love for us to just be present in the moment to everybody, and to ourselves in particular. And be open to where our lives may turn.

  Dan Diaz

  WIDOWER OF BRITTANY MAYNARD

  In 2007, Dan Diaz met the woman who was to become his wife. Brittany had just graduated from the University of California, Berkeley. In contrast to what he calls his own “more grounded, stable, sturdy” personality, Brittany had a sense of adventure. After their first date, it didn’t take long for them to decide they were a couple. Brittany grew up in Southern California and had always enjoyed the beach, surf, and sand. Then during her early twenties, her gaze shifted to the mountains, and she really came to love living in Boulder, Colorado.

  Brittany summited Kilimanjaro and Cotopaxi. She worked in an orphanage in Southeast Asia for six months. When Dan and Brittany married, in September 2012, they honeymooned in Patagonia and hiked glaciers.

  I began by asking Dan to tell me when he and Brittany started to realize she was having health problems.

  DAN: A few months after our wedding, she started having headaches. They would wake her up in the middle of the night. She would get sick and then be unable to get back to sleep. That lasted for a few months. She wasn’t losing weight and her appetite wasn’t decreasing; it was just the headaches. She went to see a specialist, who didn’t order a CT scan. When she described her symptoms, he said she was probably going through light sensitivity, sensitivity to loud sounds, and a few other things that made him believe they were migraines and nothing more.

  In 2013, the headaches went away by the summer, and she was feeling okay. But by the end of the year, they started coming back. During those holidays in particular, and on New Year’s Eve, when we were in wine country on a trip that Brittany had planned for us, the pain was just getting too intense and something seemed horribly wrong. We went to the emergency room, and the physician in Healdsburg, California, ordered a CT scan.

  And that was when we discovered the tumor and the size of it. Most physicians who saw it said it was one of the biggest tumors they’d ever seen.

  DIANE: Did the doctor suggest surgery to try to remove the tumor as a whole?

  DAN: Yes. Unfortunately there was no cure, only certain treatment options, the first one being surgery. So ten days later, on January 10, Brittany underwent an eight-hour brain surgery at the University of California, San Francisco Medical Center. They were only able to remove about 35 to 40 percent of the tumor—because of the size and location of it, that’s all they could safely get. At that point, they informed Brittany that three to five years of life was all the time she had left.

  D: And what would have happened had they gone further and tried to remove more of the tumor?

  DAN: There are ce
rtain parts of the brain that the surgeons said they just couldn’t get into, that the person will not wake up from surgery, or may end up in a vegetative state. And also the way the tumor was diffused: it had worked its way into many different parts of the brain that a surgeon’s knife or scalpel cannot get into. The damage that would be caused might end up killing the person instead of saving her.

  D: How long did it take for Brittany to recuperate after the operation?

  DAN: That was actually surprisingly quick. She was back at home within three or four days. I remember that evening in the intensive care unit, after she had come out of surgery she was still groggy, but talking to her, and her to me, that was such a relief, just hearing her voice, hearing her describing what she was feeling to the nurses. They said she should get up and move around. Her recovery was within two weeks.

  I mentioned that the prognosis was three to five years. But just two months later, the first follow-up MRI showed signs that the tumor was growing aggressively, which was indicative of a glioblastoma multiforme. That’s the most aggressive type of brain cancer. At that point, they informed Brittany that six months was all the time she had left. So it went from three or five years to, all of a sudden, six months.

  That was just devastating to her, to us. We were at that point planning on starting a family, so the idea that her life would now be cut short when she was twenty-nine years old…it took a while to process that. It was a few days of just wanting to be with one another and process the reality of what we’d just heard, the enormity of that tumor…it was just devastating to all of us.