It’s called the Doctrine of Double Effect, a philosophical conundrum but with real-life implications. For a doctor, it means that you are permitted to do something that on its face is wrong if it is morally the right thing to do. It means that you can prescribe pain-relieving medication to a dying patient and continue to up the dosage to keep the “pain” at bay, knowing that the medication will likely hasten death.
The oncologist shared this with us as my husband’s stage four glioblastoma multiforme had reduced his life to nothing but sleeping and sitting up, with me and our health care aides taking care of his every physical need. It meant that she could help us when and if he made the decision to let the tumor take its course without the curbing effects of life-prolonging medication.
It meant that he could choose when he would die. His brain cancer, and the particular location of his tumor, had rendered him able to see this clearly as late as a year into his illness. That was lucky. Or not.
Assisted dying has a century-old history in the United States. The first euthanasia bill was introduced in Ohio in 1906 — it did not pass. Florida was the next state to try to legislate the issue, now called “right to die”, in 1967. It did not pass. Legislation in Idaho failed in 1969, the same year that Elizabeth Kubler-Ross published On Death and Dying, opening discussion on the once-taboo subject of death. By the 1980s, the Catholic Church spoke out against “mercy killing” but permitted the greater use of painkillers to ease pain and the right to refuse extraordinary means for sustaining life. Advanced directives became recognized in 22 states. In 1994, Oregon became the first state to pass a Death with Dignity ballot measure. Over the years the terminology has moved from “euthanasia” to “physician-assisted suicide” to “death with dignity.” In April 2021 New Mexico became the 10th jurisdiction to enact an assisted dying law.
As we began to navigate the surreal shoals of terminal illness, “Quality of Life” was another term that was thrown at us. At once both clear and murky, it struck us both as odd, and given the hundreds of other medical terms we had to contend with — temporal lobe, wildtype tumor, blood-brain barrier, necrosis — we let it hang. Despite Jonathan’s journalist’s insatiable nose for information, which was guiding our every step, neither of us asked what this meant specifically for us.
My experience in the realm of doctors and their language leads me to believe three things. First, they have been given very little training in how to talk with patients, especially terminal patients, and especially patients who want to know the details of their illness, how each piece will affect them and what to expect every step of the way. My second observation is that doctors become a little cavalier about the language they use, believing that only they can understand the intricacies of the illness so why bother bringing the patient in with precision. This is terribly frustrating to a patient and his caregiver when both are writers who believe that precision in language is the Most Important Thing. Third, doctors use language to protect themselves from future accusations of malpractice. As we moved past the four months that were supposed to be Jonathan’s “up” time during which we were advised to take a trip or do something that he has always wanted to do, we found ourselves in a completely different reality than what the doctors had led us to believe. And in the end, they could return to the first phrase that was tossed at us — the infuriatingly vague “Quality of Life” — and remind us that they had warned us.
When you look up Quality of Life indicators you get a litany of things that, combined, are supposed to help make a life worth living. They include: wealth, employment, the environment, physical and mental health, education, recreation and leisure time, social belonging, religious beliefs, safety, security and freedom. Whoever wrote this forgot independence. They forgot to include what it is like to live a life that is completely dependent on others for all movement, all ablutions, all nutrition, all bodily management.
When you look up Medical Aid in Dying you learn that it enables a terminally ill, mentally capable adult with a prognosis of six months or fewer to live to request from their doctor a prescription for barbiturates that they can decide to self-ingest to die peacefully in their sleep.
When you look up the signs of the end-of-life stage of glioblastoma, you learn that for many weeks before the end of life the body starts to prepare itself. Appetite lessens. Vision dims. Digestion slows. Swallowing is difficult. Sleep becomes the natural state. Breathing speeds up and slows down. Agitation increases, usually quelled with Ativan. But while the person who is actively dying exists in an altered state of consciousness, preparing for the journey, those who care for and love them don’t exist in this same plane.
My neighbor, P, suffered from depression among other ailments. She and her husband, B, moved into the small house across the street from our young and growing family when our children were still little. Theirs was a second marriage, forged later in life, after having met in a support group for parents whose child has died. From the beginning P and I had a special bond, as I had a baby who died when he was five days old. P’s son had died as a teenager, and that’s a different kind of loss — one is a loss of promise and hope and expectations, and one is a loss of deep love. But we both knew how that particular kind of grief looked and smelled and felt as it pumped through our bodies. It never leaves the bloodstream.
By the time I met P and B, I had moved forward from the death of my infant son and had three healthy, beautiful children. P and B liked to sit on the chairs on their tiny front porch and watch my little ones play in our front yard.
There were many things that rippled through P’s bloodstream as she got older; a combination of physical ailments and depression and sadness and a feeling that life was too hard to keep living and this sadness pervaded her steps for a number of years. One day P asked me to come over. I walked in and was greeted by her warmth and the havoc that was their living room.
“Come with me upstairs. I have something I want to share with you.” She waved me up behind. I stepped over piles of old newspapers and other detritus. “Come in, sit down.” She pointed to a chair beside a bed in what I assumed was their bedroom. Newspapers were strewn across the comforter.
I looked up at P, and she looked happy. “I’m about to tell you something that I think will shock you, and I wanted to have a chance to tell you myself before you heard it from B or someone else.”
I waited for the reveal.
“I have decided to end my life,” P began, and I was immediately taken back to my mother’s bed 10 years earlier, pills spilled all over the comforter and my mother in tears, trying to remember what she had read about the cocktail needed to end a life she no longer wanted to live because of the pain of the lung cancer ravaging her body. She had died before she could succeed.
I blinked, and said, “Tell me more.”
“I am not at risk of death today, or tomorrow,” she said, “but I am in increasing pain. The doctors don’t know how to help anymore.” She was rational and sure. “My doctor and I have worked it out so that I will do this on my own — I am going to stop eating and drinking, of my own volition. B will not have to do anything, and therefore he cannot be held responsible.” She paused. “I just can’t live with the pain anymore.”
I knew she wasn’t talking about the physical pain.
We did not live in a state that had death with dignity laws.
“How can you be sure that it will work, and that B can be relieved of the potential illegal burden of being an accomplice?” I asked.
“He supports my decision, which is being made when I am of sound mind,” she replied. “B will hold my hand, but I will be the force behind the sustenance refusal.”
I reached over and took P’s hands. We sat like that for a while, our hands intertwined, two mothers remembering our sons and thinking about our futures.
It would take P longer than she had expected to die. She had food withdrawn first, and then, only when she was nearing the very end, liquids. I went to visit her once during the process. I held her hand again. She had no regrets. It took her about two weeks to end her life. I wonder what she was thinking in those days, before she was no longer conscious. B eventually moved out to a new life in California and sold the house to a young couple. I cannot look at their front porch without thinking about what it takes to decide to die.
One spring evening, 11 months into our brain cancer year, about a week before Jonathan was supposed to return for his regular MRI check on the tumor, we started the long walk upstairs after we had finished watching Jeopardy, which had become, as it had in the early years of our relationship, a nightly ritual. We each had our particular categories, and we were smarter together, both horrifying and secretly delighting our children as we competed. While their dad could still answer Jeopardy questions they knew that things were still somewhat normal.
“Hon, do you know the final Jeopardy answer?” I asked, glancing over at Jonathan, who had fallen asleep in his recliner. “Let’s go upstairs a little early,” I coaxed. He got up slowly and I helped him reach his cane. We began the slow walk to the staircase. One step. Then another. I walked behind him, as I always did, to make sure he didn’t slip and fall.
He grunted, groaned, and just as we reached the platform at the top of the staircase he yelped and fell down, twisting and moaning in pain, much as he had the first night in the emergency room almost one year earlier when a seizure had overtaken his body.
“Jonathan? Can you hear me?”
He was wild-eyed. He shifted slightly to the right.
“I need to get my arms underneath you to help you back up, sweetie,” I said.
He was non-responsive, and as I tried to hoist him up, his body weight slumped. I couldn’t possibly lift him, let alone get him to stand. I called my son to help, but even together we couldn’t manage his dead weight. Eventually, we called the fire department who came and brought him to his bed. He never went downstairs again.
The next morning we called the doctor to let her know what had happened. She told us that Jonathan did not need to come in for the MRI — she already knew what this fall portended. The tumor was back, and we were nearing the end. She encouraged us to call for home hospice services to make Jonathan comfortable. Everything would be palliative. The good news, she told us, is that, in the end, brain cancer is not a painful disease. She wished, in some ways, that Jonathan’s cognition was not so sharp; by this stage, she told us, most patients don’t understand what is happening. But Jonathan would move into the final month of his life with full understanding of his impending death.
We turned what had been our oldest son’s bedroom into Jonathan’s day room. We moved a recliner in there, and every morning, I would get Jonathan up and ready to move down the hall.
Jonathan could no longer take a shower alone, and so we got a shower chair and I would bring him into our stall shower and wash him. Then dry him and get him dressed. These were intimate moments, using a washcloth to wash his back as the water splashed down. Rinsing what was left of his hair with shampoo. Touching the L-shaped scar on his belly from the time he had needed emergency surgery to save his life, back many years when he thought he had cheated death. Patting him dry and walking him to the bed where I would pull on his support hose, leg by leg, each tug making him cry from pain. And, finally, his clothing, reduced to the same few pairs of fraying shorts and t-shirts for a year. By the time the ritual was over, we both were exhausted. My husband was the most private person I’ve ever met; we had never shared bathroom time or watched each other dress. To be forced to have someone take over this part of his life, the final functions over which he had had some control for a while, was mortifying for him, but for me, these were actually the moments I remember with the most tenderness and love.
When we were first presented with the concept of Quality of Life, we were stumped. We didn’t yet understand the insidious nature of glioblastoma. Despite the fact that Jonathan’s tumor was placed in such a way that he didn’t actually suffer much cognitive change, his body was in torment from a series of events that left him mostly incapacitated. Seizures, blood clots, diabetes. He was unable to walk unassisted and in a wheelchair from almost the beginning. But his greatest hope was that he would be able to drive again. For him, this was Quality of Life — the independence he had known since he was 16 and learned to cruise down the wide highways in Arizona. When we first met, I, born and bred New Yorker, did not know how to drive. He took me on journeys around our city, around our state, and around our country. He loved to drive, and although it eventually became a sore spot between us, when I felt his driving was too fast and aggressive for our family, I understood it to be the ticket to a life of freedom.
My husband’s body had been lean and strong, his heart yearned to see the world. He had a deeply analytical and lively mind. The disease that chose him was the one most unfair, the one that robbed him of the things he most cherished about his life.
When Jonathan and I first met, and I walked into his tiny studio apartment for the first time, the most arresting feature was a giant poster he had hanging over his couch-turned-bed. It said “Choose Life.” As a staunch pro-choice activist, I was deeply concerned about what this portended for our relationship. But I liked him so much, I waited a few weeks before I asked. It turns out that it’s from Deuteronomy: “I call heaven and earth to record this day against you, that I have set before you life and death, blessing and cursing: therefore choose life, that both thou and thy seed may live.”
Jonathan was deeply a religious Jew who believed in God, in Torah and in halacha — Jewish law. He adhered to the Jewish tenets of how to live a life, which included the belief that one’s body belongs to God, and that human beings do not have the right to destroy another human being or themselves. Each person is sacred, having been created in the image of God, and there is value to each life regardless of one’s relative quality or usefulness. Not only is human life itself considered sacred, but every moment of life is valued, and thus there is an obligation to attempt to save all life, regardless of how much time a person has left.
Jonathan’s Deuteronomy poster ran true to his belief system. And it extended to the lives of the mice living under our sink he tried to save by nabbing them with a humane trap and releasing them in the park, and to the moths and crickets and other insects that found their way into our house that he would capture with our “bug jar” and allow to fly free outside. He believed in life.
And he chose life, again and again. When he was almost attacked by a mountain lion hiking the Golan Heights and he ran. When he was faced with a life-threatening condition that required immediate surgery. When someone he loved was faced with death — our infant son, whose brain was tragically damaged by a bleed from a machine that was keeping his non-functioning lungs working. When faced with the decision to keep him on the machine until he died or to let him go, we held him and let him go, choosing to prevent a non-viable life. Jonathan’s grandfather, a deeply religious rabbi, told us that we had saved three lives in choosing death, our own and that of our two-year-old son.
But when the time came that his own quality of life was so diminished that there was nothing left to give him pleasure, he pushed past his Jewish commandments and allowed his human soul to take precedence. He knew when it was time to die.
Politics and religion are intimately intertwined in the conversation surrounding the right to die in the United States. Karen Ann Quindlan’s life and death were splashed across the headlines for 10 years. First, when her Catholic parents wanted to remove her from a ventilator after she collapsed from not eating and mixing Valium with alcohol, believing that God and nature should be allowed to take their course. Once the ventilator was removed, they determined that a feeding tube was not an extraordinary measure, and allowed her to be fed for nearly a decade more.
Quinlan lived in a vegetative state, ultimately dying of pneumonia and respiratory failure. She weighed 65 pounds when she died. Her quality of life had ended with a Valium and a gin and tonic, nearly 10 years earlier.
Brittany Maynard was 29 years old when she was diagnosed with glioblastoma. Rather than allow her body and mind to be ravaged by the effects of this terminal brain cancer, Maynard decided to end her life before cancer overtook her. She and her new husband moved to Oregon, one of three states at the time with right-to-die laws in place. They traveled and lived while Brittany still felt she had quality of life. On November 1, 2014, Brittany Manard died, surrounded by her family. When the Catholic church and National Right to Life movement spoke out against a patient’s right to choose to end their life in the face of a terminal illness, Maynard’s mother lambasted them. “People and institutions that feel they have the right to judge Brittany’s choices may wound me and cause me unspeakable pain but they do not deter me from supporting my daughter’s choice… the right to die for the terminally ill is a human rights issue. Plain and simple.”
I followed Brittany Maynard’s story closely in 2014. Brittany made me think a lot about my mother and the sea of pills surrounding her, the look of utter despair on her face when I walked in. Of course, I didn’t know what was waiting for me and my family, and how the question of medical aid in dying would become a lifeline for us.
“Your parents are coming over,” I told Jonathan two mornings after the fall on the steps and after the conversation with the doctor. “It’s time for you to tell them of your decision.”
Jonathan nodded. He knew that this was going to alter their lives forever.
Everyone gathered in the tiny room, and Jonathan sat in his recliner, cane by his side, bloated from steroids and looking nothing like the man we knew and loved had one year earlier. “I need to tell you all something today,” he started.
Our children looked at each other, worry crawling across their faces.
“I have decided that the time has come for nature to take its course. My tumor has returned, as you know, and it means that there is nothing left for the doctors to do except to keep me comfortable. I have decided that I have reached the point where there is no quality of life, and I am going to keep sliding down — it’s only getting worse. So after today, I have told the doctor that I no longer want to take life-prolonging medication, only palliative. It’s like committing suicide, but different.”
This was, of course, precisely the wrong word to use. This was not suicide, but a thoughtful and inevitable decision made by someone who put more premium on life than anyone I knew. But only on a life that can be well-lived. I would have to do some damage control, but I understood.
Our children stood up in unison and ran out of the room, crying and slamming the doors to their rooms behind them. I went after them, holding them and trying to explain that their dad was making a choice about how he wanted to die, not that he wanted to die. For someone for whom precise language was so very important, his inability to distinguish critical difference was a sign of how far away he had drifted from his inner core. His parents hugged him through their tears. It was, indeed, time.
The next morning, for the first time in 12 months, Jonathan did not take Keppra, his anti-seizure medication. He did not take a steroid pill. He took only an anti-anxiety med called Ativan, and some Tylenol for his pain. And as I was giving him these medications, now entirely palliative, he turned to look straight at me and told me, “I want your face to be the last thing I see.”
The removal of the life-prolonging medications acted quickly. By the following morning, Jonathan could no longer get out of bed. I called hospice and by 10 AM a hospital bed was delivered to our home. Two of our neighbors came over to help move Jonathan to the bed, which we placed right next to our own. I had a big work meeting that morning; I arrived a bit late, and no worse for the wear. One of the giant secrets of caregiving is that when called upon, the caregiver can pivot and return to what looks and feels like normality; perhaps even accomplish real work. But inside, the neurons are blowing up.
The next few days were lived in the miasma of end-of-life duties. I learned to administer Jonathan’s morphine and determine when he was in pain. Very often, at the end of life, when a brain cancer patient can no longer speak, as Jonathan couldn’t, they use their hands to point.
When his hand was cupped and pointed at his head, it meant he had a headache. When he wanted me to lean in close, it meant that he needed a bio break, which, at this stage, meant that our home health aide needed to change him. His hands, so slender and beautiful despite the bloating from the Keppra, did a little dance every day to communicate his dying wishes and needs.
With Jonathan no longer leaving his bed, for the first time in a year, and with home health aides now on 24-hour duty, I had some moments in the day where I was not on caregiving duty. It was the first time in a year that I wasn’t pinned to some essential task related to my husband’s health and mortality. While we had been busy monitoring his quality of life throughout the year, my quality of life had not been a question on the table. In the meantime, it had been reduced to nothing but caregiving. In the few minutes in the late evenings, after Jonathan had been put to bed and my children had settled into their rooms, each guarding their own broken hearts against their nightmares, my mind went not to any question of self-care but the tortured lists of what needed to happen next. There was no room for self-pity, no room for mental meandering.
Now, while Jonathan lay dying, my mind could start waking up and living. And I felt such guilt.
Guilt that he was going to die and I was going to live. Guilt that I had been praying for this moment so that my brutal caregiving duties would be over. Guilt believing that I had not done enough — enough loving, enough caring, enough work to try to extend his life. When you are presented with what is almost inevitably a terminal illness with a short shelf date, it is hard to try to fight the disease. In the beginning, when he was first diagnosed, Jonathan wanted to do battle and I wanted to accede to reality. And when the time came for him to give in, I wished I could have been more fit for the fight in the early days.
It took less than two weeks for Jonathan to die. On the final morning, I went in to deliver his morphine and he opened his left eye. He had not been conscious for several days, but this June morning, he looked at me and then quickly closed his eyes again. I didn’t realize it at the moment, but it was the signal.
Several hours later I was sitting on the front porch reading a novel about families who vacation together and face enormous emotional upheaval during the trip — a story so far removed from my reality I thought it would help pass the time. Several of our closest friends had come to visit to say goodbye, and when they left I went to sit outside for some fresh air. My brain was fuzzy and I read the same sentence ten times over. As I tried to move on to the next sentence, our health aide ran outside and told me that Jonathan had taken a big breath and then stopped breathing. I raced upstairs, held my hands to his pulse, and realized that he had died while I had been out of the room. The dying don’t want to leave when the living are there with them. It is an entirely private act. And as was his wish, I had been the last thing he saw.
My husband lived 380 days while he was dying. He wanted to live so many more. He had spent his life committed to living as full and expansive a life as he could, and his final year was spent measuring the slow, daily reduction of his abilities and of all the things that had valued in life. He had believed in life, he had chosen life, he had created life. From the day we met, he had believed in the power of living life to your fullest — Choose Life, his poster had said. Live your life with me, he implored, the night he proposed. Let’s bring life into the world, he said, when we decided to have children.
So when it came time to make the choice about ending that life, I wonder what was going through his mind. He realized that there were no choices left, really. But what does it feel like to decide to leave this world? What does it feel like to make a choice that, while pre-determined, was still his to make? He didn’t wait until death took him; he challenged death to come and get him. He roared like that mountain lion and dared to the end. From where does one summon that bravery? To envision a moment when your breath stops and all goes black, when you are no longer a part of the narrative of the earth. To choose to go there. It is an end that leaves questions in its wake, and descendants who carry that choice into the future.
Karen Paul is a writer and the principal of Catalyzing Philanthropy, a fundraising and development consultancy. She is working on a book about her grief and trauma as a caretaker for a spouse with terminal brain cancer. She has had essays and short stories published in The Washington Post, Lilith Magazine, Modern Loss, Motherwell, Red Wheelbarrow, Seltzer, Heartscapes and the two-volume pandemic collection, When We Turned Within. Karen is currently in the low-residency MFA program at Vermont College of Fine Arts, and has held grief writing workshops at the Wendt Center for Loss and Healing, Sixth and I Synagogue and CaringMatters.