An Intimate Look at Medically Assisted Death
Diane Rehm on Seeing a Dear Friend Through His Final Months
Bill Roberts was my high school sweetheart. We “went steady” in our senior year, were voted “the cutest couple in the class,” and attended our senior prom together. He was president of our graduating class and earned a scholarship to American University. Bill is nearly a year older than I am, but we graduated together because he had missed a year due to spinal meningitis, a disease that nearly took his young life and left him totally deaf in one ear. He and his wife, Irene, met at American University, and have been married for 60 years.
Our conversation took place via Skype, on December 11th, 2018. He looked pale, but managed to smile and even laugh through the pain he was experiencing from prostate cancer that had metastasized to the bone. Irene was at his side. She was now his primary caregiver, though in the last two weeks of February 2019, nurses were brought in round the clock. I asked Bill how he was feeling, and he said he’d just had a nice breakfast and coffee, felt “perky,” and might get out for a walk. “Every day is a good day,” he said.
Professionally, Bill had been program manager of advanced weapons programs (nuclear weapons) at the Rocky Flats Plant, which no longer exists. He told me, “I retired so many times, but I finally retired in 1995. They kept calling me back and I looked at the checkbook and there wasn’t much money in there, so I went back. I had been a chemist originally, but they take their best technical people and make managers out of them. Sometimes that works. And I hope it worked in my case.”
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.”It’s my understanding, I said to Bill, that he would have to be able to take the medication on his 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 60 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 anti-nausea 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.”“Diane, I’m dying, just don’t know when or how. I’d like to drift off, be consumed by the waves.”
Two months later, on February 10th, 2019, I received a long email 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 17th, came an email 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 22nd, Irene wrote: “Bill continues soldiering on but sleeps a lot. Pain we control with meds. We have had 24-hour nursing since Monday and that has been helpful. Gray and cold—we need the sun to shine.”
On February 23rd 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 25th, 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 11th, 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.
Excerpted from When My Time Comes by Diane Rehm. Copyright © 2020 by Diane Rehm. Excerpted by permission of Alfred A. Knopf, a division of Penguin Random House LLC. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.