Elderhood

by Louise Aronson

  He was started on morphine. The pain improved. But the drug brought out the swallowing trouble he’d had after a complicated heart bypass surgery eight years earlier. He’d had a feeding tube for several months while undergoing speech therapy and learning again how to eat safely. Eventually, though far from normal, his swallow was good enough, the tube came out, and he got to eat again, a great thing for a man who loved food as much as he did.

  If he couldn’t swallow safely, we faced a lose-lose choice: he could be in severe pain but eat, or he could be comfortable and the food would drop into his lungs instead of his stomach, causing him to choke and cough, maybe suffocate. His mind worsened by the day, and every attempt at getting him to choose for himself between those options failed. Another feeding tube also wasn’t an option;13 he’d been clear he’d only want one temporarily, and besides, the latest studies showed that they didn’t benefit people with dementia.

  At first, we offered him small bites and sips. Sometimes it worked. But after a couple of days on morphine, although he was finally comfortable and happier, even the smallest sip of thickened liquid or smallest bite of food caused chaos. He coughed, choked, swore, and hit at whoever was in reach. We discussed the situation with his hospice nurse and agreed to stop all food and water. For a few days, it was clear he occasionally wanted something, though he could no longer ask. We gave him moist flavored sponges that he sucked like a baby. Was that a reemerging primitive reflex, or was he hungry or thirsty? There was no way to know. He looked comfortable, finally, and I consoled myself with studies of dying cancer patients who uniformly report that after the first day or a few days without food or water, as long as their mouths and lips are kept moist, they stop feeling hunger or thirst.

  A day passed, then another, and another. He went into a coma, and a few days later he died. It was hard and sad, and I know that if I had to do it over, for his sake, I’d do the exact same thing.

  Would my father or my colleagues’ mothers have lived longer had we “done everything”? I suspect they would have, though the nurse’s mother might have died sooner of surgical complications, given what a poor surgical candidate she was. As for my father, it would have been a life of pain, anger, frustration, boredom, and futility—everything he hated most and had told us he didn’t want—until the infection, or the stroke, or whatever else.

  In truth, he’d been dying for months or maybe a year, dying in that subacute, chronic, modern way created by late twentieth-century medicine. Right now, lots of money and thought goes into fixing and little goes into considering the downstream consequences of those fixes or when they might do more harm than good. The result is unnecessary suffering, people trapped in lives they don’t want and can’t escape.

  Curing diseases is great through much of life. But it also produces an advanced—or, more precisely, terminal—old age lacking comfort, agency, meaning, purpose, and pleasure. Some people think they don’t have to worry about that, since science will soon be able to stop aging. The unlikeliness of a perfect fix aside, cure aging, then what? A great expanse of shapeless, seasonless life? Greater competition for resources, jobs, partners, and everything else on this already crowded, environmentally failing planet? Or selective application of the technology? The biotech entrepreneurs and Hollywood celebrities investing in anti-aging will get it, and the rest of us won’t.14

  Here are alternate, timely questions we’d all do well to consider: If a person is at the end of life’s chronology and has had enough, must they continue? Is it fair to consider illness and debility ethically different in very old age than earlier in life? Certainly, if people are going to make the case that those with advanced dementia and similar grave impairments are “already gone” or “an empty shell,” don’t they also need to consider a different approach to those people’s lives and deaths? And does asking these questions put us any more on an ethical slippery slope than not asking them, and then leaving people to fend for themselves? Different approaches for different groups can lead to injustice, or it can mean compassionate attention to particularity. The choice is ours.

  After turning eighty in 2017, the British writer Penelope Lively wrote that she already barely recognized herself and hoped she’d be dead by 2030, “though I can’t quite count on it. I come from a horribly long-lived family. My mother died at 93; her brother made it to 100; their mother reached 97. I look grimly at these figures; I do not wish to compete.”15 If she’s already had a full life and has a clear sense of what the future holds, should she get to decide? And if so, do we allow what might be called “passive decisions,” not availing oneself of treatment options that might prolong life, or “active ones,” allowing people near the end of life, chronologically and medically, to choose to die on their own terms.

  Many European countries permit assisted suicide, as do increasing numbers of American states. The person has to be dying and not depressed to qualify and be able to take the medications on their own to qualify. Those requirements make sense. But they also mean the laws don’t apply to old people with significant disability or dementia, and some people will end their lives sooner than they might have chosen, simply to ensure that they can. More often, they will be deprived of a right afforded younger citizens, and the privileged will have work-arounds not available to most people. The 104-year-old Australian scientist David Goodall, who in the spring of 2018 sustained a fall that further eroded his remaining quality of life, flew with three of his grandchildren to Switzerland, where he could end his life.16 He was in a wheelchair by then and had trouble seeing and hearing. He would have preferred to die at home, he said, but was forced by Australian law to undertake a transcontinental mission made financially feasible for him only after a web-based fund-raising campaign.

  In response to Goodall’s decision, the president of the Australian Medical Association said, “I think it’s very sad that someone feels this way.” I looked that doctor up. He’s an obstetrician-gynecologist. Perhaps he’s never taken care of a centenarian. I have, many times. To be sure, the Australian Medical Association president may be saying: Isn’t it sad that we have a world in which someone feels this way because we can’t give his life comfort and meaning? Or maybe he was saying it’s never okay to die even if you’re ancient and ready to go.

  But elderhood differs from childhood and adulthood in ways that should be included in discussions of death. Treatment of the same aggressive disease has very different risks and benefits for a child, an adult, and an elder. At the end of life, we need options that recognize the different situations people find themselves in at different life stages: all old people need to be allowed to fully live, and dying old people need to be allowed to die. Policies and practices that do those two things will make life better for people of all ages.

  Some people are against chosen death for religious reasons, because of a belief in the sanctity of life and the fact of human suffering. That argument is compelling. It also was formulated thousands of years ago, before science and technology interfered with the natural order of human lives. If progress can make lives longer and better, surely it can also help us make death shorter and better at the natural end of life? Even current right-to-die legislation hasn’t tackled that question. Formulated largely for younger adults with terminal diseases, its requirements mean it is not available to many of the sorts of very old people who regularly ask me and my colleagues, Why am I still here?

  Huge concepts such as past, future, and death have very different implications in very old age than in youth or middle age or early old age. Parts wear out. Options wither. Even the simplest acts become an ordeal. Here is Donald Hall, whose body didn’t hold out as long as Goodall’s (variation being a key trait of old age):

  In your eighties it gets hard to walk. Nearing ninety it’s exhausting to pull your nightshirt on … You are old when mashed potatoes are difficult to chew, or when you guess it’s Sunday because the mail doesn’t come. It might be Christmas. In your eighties you take two naps a day. Nearing nin
ety you don’t count the number of naps.17 In your eighties you don’t eat much. Nearing ninety, you remember to eat.

  If you guess the date based on the postman, and sleep most of the time, you are spending your days in a quiet abyss of loneliness, not hearing other voices, alone both practically and existentially. You are in what has been called the waiting room for death.

  Suffering people may arrive at a place where their days are made up solely of discomforts, waiting, and attending to diseases and basic bodily functions, a place the vast majority of humans of the past never got to until recent medicine kept other diseases from killing them when younger.

  This situation is unprecedented in human history. An unprecedented situation requires an unprecedented solution.

  ACCEPTANCE

  Something rumbled on my bedside table. Reaching for my pager, I looked at the ceiling, where our projection clock told me it was three fourteen A.M. On the pager’s rectangular green display screen the words read “labored” and “breathing.”

  Our call group covered two practices—the housecalls clinic for frail, homebound elderly patients, and the geriatrics clinic with patients who might be anywhere from healthy to critically ill, and from young-old to ancient.

  This text said the patient John was born in 1926, and the caller’s name was Gwen. Grabbing my glasses, robe, and phone, I wondered whether it was Gwen or the page operator who had used the word labored. Closing the bedroom door behind me, another part of my brain began considering the problems that can take breathing from automatic to hard work. In medicine, such lists are known as the differential diagnosis, and doctors’ minds are full of them. A good differential contains multiple possible causes of a particular symptom. Diagnoses are sorted from most to least likely, based on the patient’s story, history, exam, and lab tests.

  John’s daughter Gwen answered on the first ring. In geriatrics, a daughter can be anywhere between forty and eighty years old, and from the sound of Gwen’s voice, I guessed she was in the middle range.

  “He’s struggling,” she explained, “and his pajamas are soaked in sweat. It’s happened every night this week, but this is worse.” Gwen told me that her father had advanced lung disease but usually breathed fine when in bed. He’d had a stroke in the past year and now had trouble swallowing. He had lost sixty pounds. He did not want to go to the hospital.

  “There’s another problem,” she said after a pause. “Three months ago I moved him down the peninsula with us. We haven’t been able to get him back to San Francisco since then. We can’t get him out of bed, much less out of the house. My husband has a bad back. I just had surgery. And I can’t find anyone down here who will see him, so I’m calling you. I didn’t know who else to call. I’m so sorry.”

  I told her not to worry. After asking a few more questions about her father’s breathing, I googled the distance from me to John and Gwen. It was 49.7 miles. Too far.

  I asked Gwen whether she and her father had discussed what they would do if he was very sick and didn’t go to the hospital.

  “I hate this,” she said. “We have: hospice. It’s time. We both know it.”

  That answer made hers an easier call than many. Still, sometimes people’s preferences change as they move from fairly healthy to chronically ill to dying. I wanted to make sure they understood the benefits and risks of both home and hospital, and that even though I was speaking to Gwen, we were doing what John wanted, not what we wanted for him.

  These can be long, difficult conversations, but we didn’t have time for that. I could hear John breathing. I counted his gasps. They were not only strained but fast, his body trying to get enough oxygen by breathing at one and a half times the normal speed. Gwen and I would have to sort things out at an accelerated pace too.

  I told her that I was fairly sure I knew why John couldn’t breathe and that we would be even more confident once a nurse or doctor had been to the house to examine him. I also admitted that in the home we could not be as definite about his diagnoses as we could in the hospital, where machines could see inside his heart and lungs, but that at some point many people became more concerned with feeling better than with knowing precisely what was wrong.

  “That’s what he wants,” Gwen said. “There are so many things wrong, but if he could just not suffer so much …”

  Given John’s symptoms, I was reasonably certain that I could make him comfortable in their home. But first I had to make sure they understood the larger picture. There was a good chance John would not get better. He would die.

  Gwen said her father had been hospitalized many times, and it hadn’t been clear that the tests made much difference, so he’d stopped going. For nearly two years, that had worked. Each time, he’d recovered and remained out of the hospital.

  Keeping people healthy and out of the hospital is among the main goals of geriatrics and why housecalls are so important. Often old and frail people do far better in a setting where they’re allowed to remain people first, rather than having their personhood subsumed into the patient role, and their unique humanity and priorities replaced by protocols focused on diseases and treatments, as happened the second they crossed the thresholds of our hospitals and clinics. At home, there is less disorientation and more of the things like sleeping in a comfortable bed and eating favorite foods needed to restore health.

  Much more than most people imagine can be done in the home: almost every part of the physical examination, blood draws, X-rays, joint injections, gynecologic tests, IV infusions, minor surgeries, and much more. Add to that the many, considerable dangers of hospitals that people avoid by staying home, and it becomes clear why studies and a large federal demonstration program have shown that housecalls lead to better care18 and better lives for chronically ill older adults like John.

  But John wasn’t just sick, he was terminally ill. I gently reminded Gwen that her father was eighty-eight years old and his heart, lungs, liver, and kidneys weren’t working well. For some people in John’s situation, living longer is the main goal, while others prioritize staying home and being comfortable. I also said that there was no right answer, only the right answer for John and his family.19

  “He knows he’s dying,” she said. “He says he just wants to feel less awful. And to stay here, with us. I know he’s right. I just don’t know what we can do for him at four in the morning.”

  Her use of the D word reassured me. Most people, doctors included, avoid it, and it’s clear from studies across populations and educational backgrounds that when doctors don’t use it, people are more surprised and angry when their loved one dies. Not using it also reinforces the delusion, unique to this time and place in human history, that with the right medical care death is optional. Using it, by contrast, provides people with the time and power to get used to something they may not like but cannot avoid and opportunities to do and say things before it’s too late.

  I got lucky that night. Both John and Gwen were able to use the D word, and they were unified in their clear preferences about how to proceed with his care.

  I asked what drugs they had in the house, hoping for at least two types that would ease John’s breathing. Morphine and its chemical cousins mute the air hunger of struggling or drowning lungs, and antianxiety medicines help with the natural distress that occurs when a person tries to breathe and can’t get enough air.

  “Oh, God,” Gwen said. “We don’t have anything like that. He didn’t need it the last time he saw a doctor.”

  I hesitated, then asked what medications Gwen had been given after her own recent surgery.

  “Oh,” she said in a way that made clear she understood what I was thinking. “Hold on, I’ll get them.”

  Now wide-awake, I turned on my computer and wrapped a blanket around my shoulders and bare feet. I could practically see the heaves and drops of John’s chest, his sweaty brow, and the catch of light on his open mouth. I imagined, too, the minutes and hours that would follow this phone call: Gwen rearranging John’s
blankets and pillows, forcing herself to smile and make small talk, touching him here and there, whether necessary or not, as if to say: I’m here, and so far, so are you. And although I’d never met or so much as spoken to John, I had known enough fathers to see one more part of this scene: his efforts to pretend things weren’t so bad in order to reassure the daughter he still wanted to protect, even now, long after the reversal of their original roles, though they both knew that very soon he’d have to abandon even that most fundamental piece of himself.

  One of the most interesting things about being a doctor is how we are trained to keep personal feelings at bay while continuing to perform necessary, professional tasks. I felt a familiar tug, a tension gathering in my cells as if they were under the sway of a giant magnet pulling me south down the peninsula to that one lit room in a dark house on a darker street. Since I, too, had recently been the responsible daughter of a dying, elderly father, I imagined I knew how Gwen felt—the sadness and need to make things better, the fatigue and anxiety, the love and anticipation of an imminent, permanent transformation of her life. I noted my feelings, recognized them as projections, then squelched them and continued doing my job.

  “Doctor?” Gwen read me the names on each of her pill bottles. Bingo, I thought when she stumbled over a particular chemical name. Next, I advised something that, along with some of his own medications, would relieve John’s distress, something families do often but that doctors are not supposed to recommend. This combination would see him through until daylight, when we could get hospice and the right medicines into their house.

  “I can’t believe I didn’t think of this,” Gwen said. “What a relief!”

  We made a plan for that night and one for the morning. Then I made Gwen promise to call again if John wasn’t comfortable within the next hour.