We should go to surgery, I told her, but with the directions she’d just spelled out—to do what I could to enable her to return home to her family while not taking risky chances. I’d put in a small laparoscope. I’d look around. And I’d attempt to unblock her intestine only if I saw that I could do it fairly easily. If it looked difficult and risky, then I’d just put in tubes to drain her backed-up pipes. I’d aim to do what might have sounded like a contradiction in terms: a palliative operation, an operation whose overriding priority, whatever the violence and risks inherent, was to do only what was likely to make her feel better immediately.
She remained quiet, thinking.
Her daughter took her hand. “We should do this, Mom,” she said.
“Okay,” Douglass said. “But no risky chances.”
“No risky chances,” I said.
When she was asleep under anesthesia, I made a half-inch incision above her belly button. It let out a gush of thin, blood-tinged fluid. I slipped my gloved finger inside to feel for space to insert the fiberoptic scope. But a hard loop of tumor-caked bowel blocked the entry. I wasn’t even going to be able to put in a camera. I had the resident take the knife and extend the incision upward until it was large enough to see in directly and get a hand inside. At the bottom of the hole, I saw a free loop of distended bowel—it looked like an overinflated pink inner tube—that I thought we might be able to pull up to the skin and make into an ileostomy so she could eat again. But it remained tethered by tumor, and as we tried to chip it free it became evident that we were risking creating holes we’d never be able to repair. Leakage inside the abdomen would be a calamity. So we stopped. Her aims for us were clear. No risky chances. We shifted focus and put in two long, plastic drainage tubes. One we inserted directly into her stomach in order to empty the contents backed up there; the other we laid in the open abdominal cavity to empty the fluid outside her gut. Then we closed up, and we were done.
I told her family we weren’t able to help her eat again, and when Douglass woke up I told her, as well. Her daughter had tears. Her husband thanked us for trying. Douglass tried to put a brave face on it.
“I was never obsessed with food anyway,” she said.
The tubes relieved her nausea and abdominal pain greatly—“90 percent,” she said. The nurses taught her how to open the gastric tube into a bag when she felt sick and the abdominal tube when her belly felt too tight. We told her she could drink whatever she wanted and even eat soft food for the taste. Three days after surgery she went home with hospice to look after her. Before she left, her oncologist and the oncology nurse practitioner saw her. Douglass asked them how long they thought she had.
“They both filled up with tears,” she told me. “It was kind of my answer.”
A few days after Douglass left the hospital, she and her family allowed me to stop by her home after work. She answered the door herself, wearing a robe because of the tubes and apologizing for it. We sat in her living room, and I asked how she was doing.
She was doing okay, she said. “I think I have a measure that I’m slip, slip, slipping,” but she had been seeing old friends and relatives all day, and she loved it. “It’s my lifeblood, really, so I want to do it.” Her family staggered the visits to keep them from tiring her out.
She said she didn’t like all the contraptions sticking out of her. The tubes were uncomfortable where they poked out of her belly. “I didn’t know that there would be this constant pressure,” she said. But the first time she found that just opening a tube could take away her nausea, “I looked at the tube and said, ‘Thank you for being there.’”
She was taking just Tylenol for pain. She didn’t like narcotics because they made her drowsy and weak, and that interfered with seeing people. “I’ve probably confused the hospice people because I said at some point, ‘I don’t want any discomfort. Bring it on’”—by which she meant the narcotics. “But I’m not there yet.”
Mostly, we talked about memories from her life, and they were good ones. She was at peace with God, she said. I left feeling that, at least this once, we’d learned to do it right. Douglass’s story was not ending the way she ever envisioned, but it was nonetheless ending with her being able to make the choices that meant the most to her.
Two weeks later, her daughter, Susan, sent me a note. “Mom died on Friday morning. She drifted quietly to sleep and took her last breath. It was very peaceful. My dad was alone by her side with the rest of us in the living room. This was such a perfect ending and in keeping with the relationship they shared.”
* * *
I AM LEERY of suggesting the idea that endings are controllable. No one ever really has control. Physics and biology and accident ultimately have their way in our lives. But the point is that we are not helpless either. Courage is the strength to recognize both realities. We have room to act, to shape our stories, though as time goes on it is within narrower and narrower confines. A few conclusions become clear when we understand this: that our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.
Inevitably, the question arises of how far those possibilities should extend at the very end—whether the logic of sustaining people’s autonomy and control requires helping them to accelerate their own demise when they wish to. “Assisted suicide” has become the term of art, though advocates prefer the euphemism “death with dignity.” We clearly already recognize some form of this right when we allow people to refuse food or water or medications and treatments, even when the momentum of medicine fights against it. We accelerate a person’s demise every time we remove someone from an artificial respirator or artificial feeding. After some resistance, cardiologists now accept that patients have the right to have their doctors turn off their pacemaker—the artificial pacing of their heart—if they want it. We also recognize the necessity of allowing doses of narcotics and sedatives that reduce pain and discomfort even if they may knowingly speed death. All proponents seek is the ability for suffering people to obtain a prescription for the same kind of medications, only this time to let them hasten the timing of their death. We are running up against the difficulty of maintaining a coherent philosophical distinction between giving people the right to stop external or artificial processes that prolong their lives and giving them the right to stop the natural, internal processes that do so.
At root, the debate is about what mistakes we fear most—the mistake of prolonging suffering or the mistake of shortening valued life. We stop the healthy from committing suicide because we recognize that their psychic suffering is often temporary. We believe that, with help, the remembering self will later see matters differently than the experiencing self—and indeed only a minority of people saved from suicide make a repeated attempt; the vast majority eventually report being glad to be alive. But for the terminally ill who face suffering that we know will increase, only the stonehearted can be unsympathetic.
All the same, I fear what happens when we expand the terrain of medical practice to include actively assisting people with speeding their death. I am less worried about abuse of these powers than I am about dependence on them. Proponents have crafted the authority to be tightly circumscribed to avoid error and misuse. In places that allow physicians to write lethal prescriptions—countries like the Netherlands, Belgium, and Switzerland and states like Oregon, Washington, and Vermont—they can do so only for terminally ill adults who face unbearable suffering, who make repeated requests on separate occasions, who are certified not to be acting out of depression or other mental illness, and who have a second physician confirming they meet the criteria. Nonetheless, the larger culture invariably determines how such authority is employed. In the
Netherlands, for instance, the system has existed for decades, faced no serious opposition, and significantly grown in use. But the fact that, by 2012, one in thirty-five Dutch people sought assisted suicide at their death is not a measure of success. It is a measure of failure. Our ultimate goal, after all, is not a good death but a good life to the very end. The Dutch have been slower than others to develop palliative care programs that might provide for it. One reason, perhaps, is that their system of assisted death may have reinforced beliefs that reducing suffering and improving lives through other means is not feasible when one becomes debilitated or seriously ill.
Certainly, suffering at the end of life is sometimes unavoidable and unbearable, and helping people end their misery may be necessary. Given the opportunity, I would support laws to provide these kinds of prescriptions to people. About half don’t even use their prescription. They are reassured just to know they have this control if they need it. But we damage entire societies if we let providing this capability divert us from improving the lives of the ill. Assisted living is far harder than assisted death, but its possibilities are far greater, as well.
In the throes of suffering, this can be difficult to see. One day I got a call from the husband of Peg Bachelder, my daughter Hunter’s piano teacher. “Peg’s in the hospital,” Martin said.
I’d known she had serious health issues. Two and a half years earlier, she’d developed a right hip pain. The condition was misdiagnosed for almost a year as arthritis. When it got worse, one physician even recommended seeing a psychiatrist and gave her a book on “how to let go of your pain.” But imaging finally revealed that she had a five-inch sarcoma, a rare soft-tissue cancer, eating into her pelvis and causing a large blood clot in her leg. Treatment involved chemotherapy, radiation, and radical surgery removing a third of her pelvis and reconstructing it with metal. It was a year in hell. She was hospitalized for months with complications. She’d loved cycling, yoga, walking her Shetland sheepdog with her husband, playing music, and teaching her beloved students. She’d had to let go of all of that.
Eventually, however, Peg recovered and was able to return to teaching. She needed Canadian crutches—the kind that have a cuff around the forearm—to get around but otherwise remained her graceful self and refilled her roster of students in no time. She was sixty-two, tall, with big round glasses, a thick bob of auburn hair, and a lovely gentle way that made her an immensely popular teacher. When my daughter struggled with grasping a sound or technique, Peg was never hurried. She’d have her try this and then try that, and when Hunter finally got it, Peg would burble with genuine delight and hug her close.
A year and a half after returning, Peg was found to have a leukemia-like malignancy caused by her radiation treatment. She went back on chemotherapy but somehow kept teaching through it. Every few weeks, she’d have to reschedule Hunter’s lesson, and we had to explain the situation to Hunter, who was just thirteen at the time. But Peg always found a way to keep going.
Then for two straight weeks, she postponed the lessons. That was when I got the call from Martin. He was phoning from the hospital. Peg had been admitted for several days. He put his cell on speaker so she could talk. She sounded weak—there were long pauses when she spoke—but she was clear-voiced about the situation. The leukemia treatment had stopped working a few weeks before, she said. She developed a fever and infection due to her compromised immune system. Imaging also showed her original cancer had come back in her hip and in her liver. The recurrent disease began to cause immobilizing hip pain. When it made her incontinent, that felt like the final straw. She checked into the hospital at that point, and she didn’t know what to do.
What had the doctors told her they could do? I asked.
“Not much,” she said. She sounded flat, utterly hopeless. They were giving her blood transfusions, pain medications, and steroids for tumor-caused fevers. They’d stopped giving her chemotherapy.
I asked her what her understanding of her condition was.
She said she knew she was going to die. There’s nothing more they can do, she said, an edge of anger creeping into her voice.
I asked her what her goals were, and she didn’t have any she could see possible. When I asked what her fears for the future were, she named a litany: facing more pain, suffering the humiliation of losing more of her bodily control, being unable to leave the hospital. She choked up as she spoke. She’d been there for days just getting worse, and she feared she didn’t have many more. I asked her if they’d talked to her about hospice. They had, she said, but she didn’t see what it could do to help her.
Some in her position, offered “death with dignity,” might have taken it as the only chance for control when no other options seemed apparent. Martin and I persuaded Peg to try hospice. It’d at least let her get home, I said, and might help her more than she knew. I explained how hospice’s aim, at least in theory, was to give people their best possible day, however they might define it under the circumstances. It seemed like it had been a while since she’d had a good day, I said.
“Yes, it has—a long while,” she said.
That seemed worth hoping for, I said—just one good day.
She went home on hospice within forty-eight hours. We broke the news to Hunter that Peg would not be able to give her lessons anymore, that she was dying. Hunter was struck low. She adored Peg. She wanted to know if she could see her one more time. We had to tell her that we didn’t think so.
A few days later, we got a surprising call. It was Peg. If Hunter was willing, she said, she’d like to resume teaching her. She’d understand if Hunter didn’t want to come. She didn’t know how many more lessons she could manage, but she wanted to try.
That hospice could make it possible for her to teach again was more than I’d ever imagined, certainly more than she’d imagined. But when her hospice nurse, Deborah, arrived, they began talking about what Peg cared most about in her life, what having the best day possible would really mean to her. Then they worked together to make it happen.
At first, her goal was just managing her daily difficulties. The hospice team set up a hospital bed on the first floor so she wouldn’t have to navigate the stairs. They put a portable commode at the bedside. They organized help for bathing and getting dressed. They gave her morphine, gabapentin, and oxycodone to control her pain, and methylphenidate proved helpful for combating the stupor they induced.
Her anxieties plummeted as the challenges came under control. She raised her sights. “She was focused on the main chance,” Martin later said. “She came to a clear view of how she wanted to live the rest of her days. She was going to be home, and she was going to teach.”
It took planning and great expertise to make each lesson possible. Deborah helped her learn how to calibrate her medications. “Before she would teach, she would take some additional morphine. The trick was to give her enough to be comfortable to teach and not so much that she would be groggy,” Martin recalled.
Nonetheless, he said, “She was more alive running up to a lesson and for the days after.” She’d had no children; her students filled that place for her. And she still had some things she wanted them to know before she went. “It was important to her to be able to say her good-byes to her dear friends, to give her parting advice to her students.”
She lived six full weeks after going on hospice. Hunter had lessons for four of them, and then two final concerts were played. One featured Peg’s former students, accomplished performers from around the country, the other her current students, all children in middle school and high school. Gathered together in her living room, they played Brahms, Dvořák, Chopin, and Beethoven for their adored teacher.
Technological society has forgotten what scholars call the “dying role” and its importance to people as life approaches its end. People want to share memories, pass on wisdoms and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay. They want to
end their stories on their own terms. This role is, observers argue, among life’s most important, for both the dying and those left behind. And if it is, the way we deny people this role, out of obtuseness and neglect, is cause for everlasting shame. Over and over, we in medicine inflict deep gouges at the end of people’s lives and then stand oblivious to the harm done.
Peg got to fulfill her dying role. She got to do so right up to three days before the end, when she fell into delirium and passed in and out of consciousness.
My final remembrance of her is from near the end of her last recital. She’d taken Hunter away from the crowd and given her a book of music she wanted her to keep. Then she put her arm around her shoulder.
“You’re special,” she whispered to her. It was something she never wanted Hunter to forget.
* * *
EVENTUALLY, THE TIME came for my father’s story to end, as well. For all our preparations and all I thought I had learned, we weren’t ready for it, though. Ever since he’d gotten on hospice in the early spring, he’d arrived at what seemed like a new, imperfect, but manageable steady state. Between my mother, the various helpers she had arranged, and his own steel will, he’d been able to string together weeks of good days.
Each had its sufferings and humiliations, to be sure. He needed daily enemas. He soiled the bed. The pain medications made his head feel “fuzzy,” “foggy,” “heavy,” he said, and he disliked that intensely. He did not want to be sedated; he wanted to be able to see people and communicate. Pain, however, was far worse. If he lightened up on the dose of his medications, he experienced severe headaches and a lancing pain that shot up and down his neck and back. When he was in the grip of it, the pain became his entire world. He tinkered constantly with his doses, trying to find the combination that would let him feel neither pain nor fogginess—feel normal, like the person he’d been before his body began failing him. But no matter what the drug or dose, normal was out of reach.
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