When My Time Comes

by Diane Rehm

  I asked Bill to describe when his most recent health problems began.

  “Well, Diane, this condition fell on me like a load of bricks, actually. It was almost two months ago. Before that I was a young man. I was athletic. I could do almost everything. Suddenly, my back started hurting, and that put me in the hospital the first time. I spent most of September in and out of the hospital with back problems. And finally, the doctors diagnosed my case and said it was stage IV prostate cancer that had metastasized. I also had two heart attacks, and the doctors discovered I have congestive heart failure. I guess there’s a bet going with the doctors as to which one will get me first, the heart failure or the cancer.

  “When I got out of the hospital I thought it was over, that my days had ended. But here I am, two months down the road. I have both hospice care and palliative care, more than a reliable backup to Irene, who is my principal caretaker, but she needs time to herself. She needs rest and relaxation of her own.”

  Irene says that when Bill first came home he was unable to do even the smallest thing for himself, and she didn’t know how she was going to manage. “It was a learning experience for both of us.”

  I asked Bill what his doctors had told him before he was discharged from the hospital.

  “They were very honest, very up-front. They told me my time was limited. When you hear those words, it sinks in. So I go, I guess like an alcoholic, day by day. I have to make every day count. I look forward to getting up in the morning and seeing my bride, my new bride of sixty years. She has a beautiful face and a beautiful disposition, and the doctors wish me well.”

  Bill and Irene live in Boulder, Colorado, where medical aid in dying is permitted. I asked about Bill’s conversations with his doctors on his end-of-life wishes.

  “We met Dr. Laura Hughes about a month ago, and I will see her again in less than two weeks. We’ve gone through the routine paperwork, signing on to medical aid in dying. She was very gentle and kind with me and walked me through the process generally, the pharmaceuticals I’ll use. I feel very lucky living in Colorado and having this option. When I first got out of the hospital, I was ready to end it all right then, I felt so horrible. But being helped by Irene and the hospice folks, the palliative-care folks, I feel I have a future, albeit short. Dr. Hughes held my hand and walked me through that gently. It sounds like just the thing to do when the time comes.”

  I asked Bill how he would know when the time has come.

  “Maybe it’s the pain, the pain will get so bad. Or maybe I’ll become confined to a bed. I’m an active person. I don’t want to be restricted so much. I’ve had a great life. I’ve had a great wife. I’m lucky to have this option, this medical aid in dying. I think of your dear husband John Rehm, who did not have this option, and others in my family who did not, and they were brave souls. They had to endure.”

  I asked Irene how she felt about what Bill was saying.

  “Diane, I was present for all the conversations, because it’s always good to have two sets of ears to hear so you can countercheck each other. But I was already a supporter of the movement, Compassion & Choices. And Bill and I have always talked about everything. We’ve discussed end of life because friends have died, friends have gone on. Terrible things have happened to people we’ve loved so much, and now it was happening to us. When you get to be in your eighties, you realize time is running out. It’s part of the life process. So we’d talked extensively about the end of life and what we want. In fact, several years ago, we made the decision to donate our bodies to science.”

  I asked Bill whether he’d applied for the medication needed to carry through on medical aid in dying, and whether it was now in his possession.

  “Yes and no. We’ve applied. We have one more session with the oncologist, Dr. Hughes, to finalize paperwork and the conditions of Colorado state law with regard to this. It will be in the presence of a clinical pharmacologist who will supply me with the drugs. I have to pay a fairly hefty price for the drugs. We have a situation in Colorado where there’s a “shortage” of secobarbital, which is the drug that finally puts me to sleep gently. It’s a matter of timing whether I can get the secobarbital or not. So no, I do not have the drugs in my possession.”

  It’s my understanding, I said to Bill, that he would have to be able to take the medication on his own.

  “Right. That’s the prescribed way. I must mix the formula, I must drink it myself. There are a couple of fluids I take beforehand that are antinausea drugs. Yeah, I have to do this on my own. I have my wife there, we have a couple of friends who will sit with us, who are, for me, the extra backbone for Irene to lean on when this happens. I worry about her and what happens when I’m gone.”

  I asked Bill what would be a good death for him.

  “Well, the betting is on at the hospital that the heart may well take me first. But I look forward to medical aid in dying. It will be a gentle, gentle easing into whatever comes next. I have no great anticipations about the next life, but I tell you what, I’ll find out and try to let you know.”

  I told Bill that I’ve always thought that, when my time comes, I’d like to have my husband, my children, my dearest friends all here for a lovely dinner, lots of champagne, lots of laughter, and then quietly, with my husband, son, and daughter, go off into the bedroom and quietly go to sleep. It seems to me that would be perfect.

  Bill said he hadn’t ordered any champagne yet, but thinks he will. Then he said, “But be sure to invite me to your party. That sounds like fun!”

  On a more serious note, I asked Bill whether he was afraid of dying.

  “I was. I have been. I’ve had a few incidents of anxiety. They’re mainly related to breathing. I have a fear of losing my breath and not being able to get oxygen into my lungs, or the lungs failing, or the heart collapsing. But to answer you honestly, quite honestly, no. I don’t look forward to it, but there will come a day and I’ll be ready. Irene will be there. To hold her hand means so much to me. The day won’t be that far off. I don’t fear it any longer.”

  Two months later, on February 10, 2019, I received a long e-mail from Bill indicating a deterioration in both body and spirit. In it, he wrote: “My bad days have evened out with my good, alas, so I only go out with friends on days when I’m able. Got my end-of-life drugs last week. Stashed in the pantry. Its shelf life is six months, longer than a lot of products hiding in there. So, in a nutshell: I’ve taken a turn southward. Without friends like you, I’d probably be long gone.”

  On Valentine’s Day, Bill wrote: “You are here with us. I feel it. It’s a strange feeling, this dying…confused at the moment. Getting late. Irene has just refreshed me with cold water, my drink of choice at the moment. Not able to tolerate anything else. Diane, I’m dying, just don’t know when or how. I’d like to drift off, be consumed by the waves…Fear, dread, or pain? None of the above, just all of the above all the time. Irene, the love of my life, keeps me strong, says it’s past bedtime. What will I do without her? We’ll soon find out. I do love you. I do love her. See you again one of these days, I promise. Bill.”

  Then, on February 17, came an e-mail from Irene: “Bill is in bed and has lost a great deal of strength. He is sweet but sometimes confused. This last week has been very difficult for him. He is very proud and the loss of control is not easy. Luckily we will start with skilled nursing tomorrow. Both of us need the help.”

  On February 22, Irene wrote: “Bill continues soldiering on but sleeps a lot. Pain we control with meds. We have had twenty-four-hour nursing since Monday and that has been helpful. Gray and cold—we need the sun to shine.”

  On February 23 came this e-mail from Bill: “Haven’t been out of the house all week, now with round-the-clock care. Misery. Have the drugs, almost down to final goodbyes. So weak. God give me strength. Irene, friends, neighbors, caregivers so nice, thoughtful. I truly am the luckiest man alive, pain
and everything. Stay brave yourself, carry on the fight. I love you. Bill.”

  It was hard to read this message without crying. I couldn’t sleep that night, thinking of what Bill was going through. So, on February 25, I called his home, and he answered! Sounding very weary and having a hard time breathing, he was nevertheless able to carry on a conversation with me for about ten minutes. He was waiting for a friend to visit, the widow of a former coworker of his at Rocky Flats, who’d died of exactly the same disease Bill had. I asked whether there was a connection, and Bill responded, “Yes, exposure to plutonium.” He didn’t want to say more than that, but I suspect there may be some lawsuits involved.

  In the end, my dear friend Bill Roberts died without taking the medication. His wife said his breathing became more difficult, until, at 8:03 p.m. on March 11, 2019, it stopped. I shall always miss his warmth and humor, his generosity toward all his friends, and the courage he demonstrated in speaking with me so openly and honestly about the end he knew was drawing near.

  Dr. Lonny Shavelson

  DIRECTOR, BAY AREA END OF LIFE OPTIONS

  Dr. Lonny Shavelson’s medical practice in Berkeley, California, is devoted to aid-in-dying requests. Since California adopted its End of Life Option Act, he has helped numerous patients through the process, and has written prescriptions for those who met the criteria. We’re seated in the living room of his modest house. The furniture is well worn but comfortable.

  DIANE: Dr. Shavelson, how early in your life did thinking about dying appear?

  DR. SHAVELSON: The question of dying started before I was born. My grandmother, who had diabetes and kidney failure and was going blind, had a very difficult death. And the family rumor was that the doctor went into her room and asked the family to leave him alone for a moment, and then when he came out, he said she had just died. I never knew how much of this is true; it was two years before I was born. The assumption on the part of my family was that he had given her an injection out of mercy, and that the reason he asked everyone to leave the room was so that he could give her a merciful death. My mother was so affected by that story that I think I started hearing it when I was two years old.

  D: Was your grandmother suffering a great deal?

  DR. S: She was crying out, “God save me,” or “God kill me,” actually. Crying out in Yiddish, “God kill me, God kill me.” And then she died when she was left alone with the doctor for that moment. Everybody in the family thought that if he had brought about her death, it was totally appropriate.

  D: When your mother began to enter middle age, she had her own medical issues, and apparently when you were fourteen, she made a request of you.

  DR. S: Yes. My mother had severe Crohn’s disease, a bowel inflammatory disease that is a lot more uncomfortable than you might think. She suffered significantly through the years, had major surgeries repeatedly, but was generally uncomfortable from it. When I was twelve or fourteen, she started requesting me to help her die. We did that dance until she was seventy-five, and she ended up dying a natural death, as much as there’s anything called a “natural death” these days. I’m not sure anybody has a natural death anymore. She died in a hospital. But through all of this we had an understanding that at any point in time, as her suffering increased, I would help her die.

  D: How did your father feel about that?

  DR. S: My father pretty much ignored it, never took it seriously. My father was a guy who generally tried to avoid conflict. So his response to my mother had been “Oh, that’s silly, we’re not going to pay attention to that.” When my father said no, my mother would turn to me, and I took her request for suicide quite seriously from the age of thirteen.

  D: Do you recall the language of your conversations?

  DR. S: She said, “I need to die, and I need you to help me.” She even had instructions. She wanted potassium. She somehow thought that at thirteen I could start an IV and give her an overdose of potassium. I’m not sure how she came up with the overdose of potassium. But our language was: I need the potassium now.

  D: And finally, she had to go into the hospital, where she died naturally. How do you think that early experience affected you?

  DR. S: I think what it did was open up the thought process about suffering. That was probably one of the driving forces behind my decision to become a doctor. I think people really started talking about this around the time of Jack Kevorkian, in the early nineties. And it made me pay more attention to the bigger picture. By that time I was a doctor practicing emergency medicine. I had seen a lot of deaths, and it made me really want to explore a lot more about what helping people to die really means. It was important to understand it better and to really get into the idea of what was still then a hidden world of people asking to die because of illness and suffering; Jack Kevorkian was just the tip of what was happening.

  D: In your book A Chosen Death: The Dying Confront Assisted Suicide, you quote Dr. Timothy Quill, who says those who’ve witnessed difficult deaths of patients in hospice programs are not reassured by the glib assertion that we always know how to make death tolerable. Please talk about the realities of palliative care, hospice care, and what they can and cannot do.

  DR. S: I love hospice, and I say that straight out. I think what hospice does is phenomenal in guiding people toward—I hate to use the term a good death, because nobody knows what that means—in guiding people toward a reasonable death, where they’re comfortable, where the amount of suffering is minimized. I think palliative and hospice care are amazing at making death easier for people.

  Yet there are limits, and I think everybody has to acknowledge that everything in medicine reaches a point where it doesn’t work. I think that hospice workers have had an uphill battle in terms of getting validation. Over the last fifty years, it’s been amazing to watch the growth. But on the other hand, there’s been this attitude, due to the need to self-advertise, that we do a really wonderful job; we’ve forgotten that for some patients, the suffering goes on.

  For some patients, even the best hospice death is not the right death for them, because it can last too long. It may involve being in a coma for three weeks during which the family has to take care of this inert body. And that’s not what they want. It may be there’s more shortness of breath than they would like to tolerate. There may be more pain. Pain is almost always controllable, but not always. And then there’s the question of existential angst as some people get to the end of their lives. They just don’t want those last three weeks. So, as wonderful as hospice is, there are limits. I think some patients should have the right to choose, even within the realm of hospice, that they’re ready to go.

  D: What about palliative care?

  DR. S: Palliative care has a lot of overlap with hospice care. Palliative care, essentially, is the treatment of symptoms, so that you’re not treating the underlying disease, you’re treating the symptoms that are caused by the disease. In palliative care, that might happen in a realm outside of hospice, such as in a hospital, where there’s a palliative-care team. A little less common is at-home palliative care, which starts to overlap with hospice. For those who are ill and suffering but can’t yet get hospice care, palliative care is completely appropriate. But it has the same limitations. It’s wonderful, it treats pain, nausea, vomiting, angst, all of those things. But some patients still have the right to say, “Thank you for the wonderful care you’ve provided, but I have another choice to make and my choice is to take medicines to die.”

  D: How do you respond to people like Dr. Ira Byock, who say that palliative care can take care of all pain, can deal with every issue, and there’s no need for medical aid in dying or hospice care?

  DR. S: Ira Byock and I have had this debate going on for about twenty-five years now. When doctors say, in any field of medicine, that they can do it all, I’ll always doubt them. When they say that they can take care of anyb
ody’s end-of-life situation and make it as comfortable as the patient wants, they cannot be right, because nothing is effective all the time. Sometimes hospice and palliative care cannot alleviate symptoms. I’ll give you an example. Somebody who has a large mass in his mouth from a cancer, and it’s about to occlude the airway and stop his breathing, his salivating, and he can’t swallow—this a person whose symptoms are difficult to control, other than sedating severely and putting him into sort of a confused, sedated state. And some patients in situations like that might say, “Your palliative care is helpful, but it’s not what I want to do.” It’s a question of freedom.

  D: So you’re talking about allowing the patient to define what it is that he or she is feeling in terms of pain and/or suffering?

  DR. S: Correct. I think that when someone like Ira Byock says we can take care of everyone and make them comfortable, there is no such thing as “everyone.” Individuals should be able to make different choices than the ones Ira Byock would like them to make. There’s a certain element of paternalism that goes on here—this is the old style of doctor, right? “I’m your doctor, listen to me. I can make you do the following things and you’ll be fine.” There’s a new way of doing medicine, which is to listen to the patient, and if the patient says, “Doctor, I know you can keep me semicomfortable for the next three weeks, but I’m going to be in a stupor and sedated from all the morphine you’re giving me and all the rest. I don’t want that.” The patient has the right to make the decision.

  D: You’re talking about giving the patient more choice. You, as an individual, have come to give the patient more choice, but what kind of teaching is going on in medical schools these days? When you went through medical school, I don’t think there was discussion about the patient’s right to choose.