The Art of Dying Well

by Katy Butler

  CARING FOR THE SOUL

  Doug is a creature of habit. Every morning he makes his bed, meditates for twenty minutes, and does his own form of affirmative prayer. He reminds himself that he loves himself and his grandchildren unconditionally and lets “God’s love, peace, glory, and light” flow through him. He lights a candle and sends prayers to friends whom he knows are sick or close to dying. He makes a mental list of what he’s grateful for: that he has a roof over his head, that the wolf is not at the door, that he’s got another day to play.

  The first two-thirds of life are usually dedicated to learning skills; building a life, a career, and a family; and achieving worldly status. The last third of life has developmental tasks of its own. These generally involve shifting from individualistic striving to greater generosity, and reflecting on what all that work meant. The challenge, and the satisfaction, is to give back to the world something of what you’ve learned and become. Quiet reflection can aid in the shift from self-absorption to generosity, from striving to letting go, from mourning losses to accepting what is.

  Many people return to their childhood religions in later life, or explore other approaches to spirituality. Consider doing so, perhaps by spending half an hour in silence at the same time each day. You might get up before the rest of the household and find a private spot that you can make beautiful with a flower, photo, or view. Some people just sit, enjoying the sensation of breathing, and letting their thoughts come and go. Others say prayers, read poetry or religious texts, or follow a recorded guided meditation. The key is to find a practice that nurtures you, and to do it faithfully, at the same time each day, until your body gets used to the routine. Daily rituals of simply being rather than doing become more important as time goes by. When death comes, you need to be comfortable with simply being, because there is nothing left to do but let go.

  Consider making the contemplation of death a part of your spiritual practice, as do many wisdom traditions. It won’t make you die any sooner and it may help you appreciate your life today more keenly. “I am of the nature to grow old,” goes a chant repeated each day by monks and nuns in many Buddhist temples:

  There is no way I can escape growing old.

  I am of the nature to get sick. There is no way I can escape getting sick.

  I am of the nature to die. There is no way I can escape death.

  Everything and everyone I love will change. There is no way I can escape being separated from them.

  My deeds are my only companions. They are the ground on which I stand.

  Around the world in the autumn, during Rosh Hashanah services, Jewish congregations recite that only G-d knows who, in the following year “shall perish by fire and who by water; who by sword, and who by beast; who by hunger and who by thirst.” A human being is “as the grass that withers, as the flower that fades, as a fleeting shadow, as a passing cloud, as the wind that blows, as the floating dust, yea, even as a dream that vanishes.” I find these natural images beautiful and comforting. They remind me that transience, sickness, aging, and death are not the signs of failure they’ve come to seem in our can-do society. We are part of an eternal cycle of birth, growth, and decay.

  Ways to Prepare:

  • Build your physical, social, and spiritual reserves, start planning for a good death, and reverse health problems while you still can.

  • Start with what requires the most from you and the least from medicine. Get half an hour or more of vigorous, pleasurable exercise every day.

  • Get support from Alcoholics Anonymous, Food Addicts Anonymous, a Diabetes Prevention class at the Y, or a Freedom from Smoking clinic. If your blood pressure, cholesterol, or blood sugar remain high, take medication.

  • Find a doctor or a health system that emphasizes prevention, remains accessible if you stop driving, and will be with you for the long haul.

  • Get to know neighbors, cultivate friendships with younger people, help friends who are sick, and find ways to mentor and to give.

  • Pick a medical advocate (formally known as a medical power of attorney, proxy, health care agent, or surrogate) and talk openly about your fears and wishes.

  • Sign an advance directive, free online from The Conversation Project and mydirectives.com, or fill out the “Five Wishes,” version, $5 from AgingwithDignity.org, P.O. Box 1661, Tallahassee, FL 32302.

  • Prepare not only for death, but for a period of prolonged disability. Fill out forms to allow a trusted friend or spouse to be your “authorized representative” with Medicare, access your medical records, and act as your “durable power of attorney for finances.”

  • Get your family on the same page. Talk about what a “good death” means to you.

  • Create a simple daily spiritual practice, including half an hour of quiet time and a gratitude list, to feed your soul.

  —CHAPTER 2—

  Slowing Down

  When Less Is More • Simplifying Daily Life • Finding Allies in Slow Medicine, Geriatrics, and a Good HMO • Reviewing Medications • Reducing Screenings • Making Peace with Loss

  Thoroughly Unprepared

  Thoroughly unprepared, we take the step into the afternoon of life. Worse still, we take this step with the false presupposition that our truths and our ideals will serve us as hitherto. But we cannot live the afternoon of life according to the program of life’s morning, for what was great in the morning will be little at evening and what in the morning was true, at evening will have become a lie.

  —CARL JUNG

  To do nothing is also a good remedy.

  —HIPPOCRATES

  You may find this chapter useful if you recognize yourself in some of the following statements.

  • It took some effort to blow out all the candles on your last birthday cake.

  • You sometimes say “I’m not who I used to be,” if only to yourself.

  • You see at least two “-ologists”: a nephrologist, pulmonologist, urologist, endocrinologist, gastroenterologist, neurologist, or cardiologist.

  • You take at least three medications regularly.

  • Your physical reserves are thinner. A cold, flu, or minor injury flattens you for a week.

  • Your cognitive margins are thinner, too. You sometimes feel confused if you drink too little water, get too little sleep, or pick up a urinary tract infection.

  • You’re slowing down, and your satisfactions are shifting. You water-walk rather than hike, do t’ai chi rather than salsa, take photographs rather than bike.

  • You’re not in a nursing home. You don’t fall frequently. You can still get out of a chair on your own and walk half a mile under your own power on flat ground. (If any of these are a problem, it is a sign of advanced frailty, and you may want to skip to Chapter 5, “House of Cards.”)

  WHEN LESS IS MORE

  Laura Lamar is a registered nurse, attorney, and hospital risk manager in Chicago. Her father was a pharmaceutical salesman. Years ago, she took a vacation on the central California coast and struck up a conversation in a restaurant with a retired teacher in her late seventies named Marj. The two women quickly bonded: both had wicked senses of humor and plenty of joie de vivre. Marj had come into her own after the death of her husband, an architect, and she was making the most of the time she had left.

  The two kept in touch. Whenever Laura was on the West Coast, she and Marj got together for cocktails and outings. Time passed. Marj had a few mini-strokes, turned ninety, sold her house, and moved into an assisted living complex in Monterey with a view of the sea. Her balance grew wobbly. She got dizzy frequently and sometimes lost her train of thought. She started using a walker. But the friendship stayed strong and Laura kept visiting.

  One summer day, as the two were sitting down to lunch in the residence dining room, Marj realized she’d forgotten her mealtime medications and asked Laura to go to her unit for them. In the kitchen cabinet, Laura found twenty-two pill bottles neatly lined up, prescribed by six different doctors and filled
at four different pharmacies. “Nobody had any oversight,” said Laura. “It was a disaster waiting to happen.”

  Marj was taking drugs for hip pain, sleeplessness, constipation, itchy skin, high blood pressure, acid reflux, and other common late-life miseries. For high blood pressure, her cardiologist had prescribed Lopressor, which can cause insomnia, so another doctor had prescribed a sleeping pill. A second blood pressure medication, Lasix, was making her skin itch, and for that she was taking Benadryl. The Benadryl made her constipated, so she was told to take Dulcolax, a suppository that can cause dizziness. And so it went. Almost every drug on the shelf had a side effect that had led to a new drug that had led to yet another drug to counteract yet another side effect. Dulcolax, Benadryl, and another of her drugs, Tagamet, all caused dizziness, a serious risk for an elderly woman with brittle bones whose balance was unstable enough to require a walker. Benadryl and the sleeping pills are also anticholinergics, an insidious group of commonly prescribed drugs that befuddle thinking and substantially increase the likelihood of developing dementia.

  Laura returned to the dining room with a few of Marj’s pill bottles in hand and sat down with her friend. “Marj,” she said. “This is really, really dangerous. I would have a difficult time managing all these different medications—and you’re ninety-two! Do you mind if I have a talk with your son?”

  Later that night, she phoned one of Marj’s three sons, all of whom lived more than five hours away near the Oregon border. “This is not my business,” she said. “But I’m going to put my nose in because I love your mother.” She laid out the situation: the pills, the numerous doctors and pharmacies, the right hand not knowing what the left was doing. Laura suggested a “medication review” with a geriatrician—a specialist in the health problems of old age. After a prolonged search—there are only 7,500 geriatric specialists nationwide for an older population of over twelve million—her son found one thirty miles from his mother’s home and set up an appointment. Marj put all her medications in a paper bag, got in the car her son hired, and went.

  In the geriatrician, Marj finally had a doctor who looked at her as a whole person, rather than a collection of malfunctioning organs. Over the course of the following year, her new “umbrella doctor” weaned her off Benadryl, Lopressor, Dulcolax, and another fourteen of her medications. The process was slow. Her doctor tried drugs with less drastic side effects, reduced dosages gradually, and recommended nondrug alternatives. Marj began swimming five days a week rather than two, which reduced her hip pain. She ate more fiber-rich fruits and vegetables, which diminished her constipation and acid reflux. By the time the year was over, she was taking five prescriptions, saving money, and feeling better. “Her mind was clearer, she wasn’t dizzy anymore, her gait and balance were better, she was sleeping better, and she was no longer losing her train of thought,” Laura said. “She just needed someone to stand up for her.”

  Decline, as experienced in the phase I’m calling Slowing Down, is more often felt than seen. Eyes cloud, joints ache, muscles wither, stamina thins, the immune system weakens, bones grow brittle, minor slips of memory bedevil the day. Maladies accumulate.

  The medicine cabinet fills with pill bottles, the calendar with doctors’ appointments. The body becomes increasingly vulnerable to tiny blows it once shrugged off. Recovery takes longer, and sometimes people never get back to their old “normal.” Most people slowing down are in their seventies or older, but some people in their fifties and sixties who are coping with several chronic illnesses are keenly aware they’re in this stage.

  Continue with the lifestyle changes suggested in the previous chapter, especially exercise, as it will lengthen your time on a high plateau of decent functioning. But one way or another, decline will come. Living the happiest, healthiest possible life is made easier by simplifying daily routines, creating a coordinated team out of a fragmented jumble of doctors, making peace with loss, and understanding the limits of medicine in the face of advanced age and chronic illness.

  SIMPLIFYING DAILY LIFE

  As energy becomes a precious and limited resource, simplifying is a survival skill. I’ve learned to beware “the disease of one more thing”—the attempt to squeeze just one more movie, dinner, car trip, or party into a weekend. My husband and I find that when we do less, we enjoy what we do do, more. We try to let go of the unimportant and stick with what gives us the most meaning, comfort, and joy. This is a fine time to think about what you hold dear and make sure you are spending your precious life doing it.

  Moving to a smaller house, reducing the size of a lawn and the number of mutual fund accounts, putting bills on auto-pay, and decluttering possessions can help you stay independent longer. Keep the tasks of daily life manageable as energy and mental clarity wane. You can also apply the principle of simplification to the doctors you see, the health screenings you permit, and the pills you take.

  FINDING ALLIES IN SLOW MEDICINE, GERIATRICS, AND A GOOD HMO

  This is a time to reorient your expectations of medicine. What worked when you were younger may not work now. Earlier, the rapid deployment of tests, drugs, and surgeries might have meant the difference between living and dying. But fast medicine can expose aging, fragile bodies to unnecessary risk. Thoughtful, well-coordinated, less aggressive care, supervised by a single doctor, often produces better results. Look for medical allies in geriatrics, primary care, and family medicine, all of whom understand that the health problems of later life are usually caused by multiple factors. What often works best is not a silver bullet, but a lot of modest tinkering.

  First formulated by cardiologists in Italy in 2002, the philosophy of Slow Medicine was popularized in the United States by the late Dennis McCullough, MD, a geriatrician at Dartmouth Medical School and author of the landmark 2008 caregivers’ manual My Mother, Your Mother: Embracing “Slow Medicine,” the Compassionate Approach to Caring for Your Aging Loved Ones. Slow Medicine for elders, as McCullough described it, is characterized by medical minimalism, thoughtful collaborative decision-making, and protection from overtreatment. He cautions that at this health stage, “ill-considered testing, drugs, or medical procedures may pose a greater threat than taking no action at all. Poor sleep, indigestion, incontinence, constipation with soiling, and depression are seldom ‘fixed’ by a drug alone.” Look for doctors who take time to create a relationship of trust. Try to find someone who asks about symptoms, takes a careful medical history, touches you, listens, and thinks things through without haste. In the words of cardiologist and Slow Medicine pioneer Alberto Dolara, “To do more is not necessarily to do better.”

  Given the gaps in our health care system, this may prove impossible. But it’s worth a try. Unfortunately, doctors who work as solo practitioners and are paid on a fee-for-service basis are not reimbursed well for giving any patient this kind of thoughtful care. “Spending proper time to deal with several medical issues in one visit,” said one former primary care physician, “can take an hour . . . and more time after that for phone calls, notes, and paperwork. Medicare does not pay the $300 to $400 per hour that it takes to run an office, so having such patients is a losing proposition. This is why primary care physicians refer them to specialists and neglect to discuss the big picture.” The result is a collection of specialists who don’t talk to each other.

  For this reason, many good primary care doctors have fled to health maintenance organizations (HMOs) where they are paid on salary and freed from the headaches of running a small office. If you’re lucky enough to live in an area with a good HMO or Medicare Advantage plan, and your health problems are not exotic, consider leaving fee-for-service medicine for an HMO.

  All-under-one-roof HMOs, like the sprawling, highly rated Kaiser Permanente systems, provide your health care for a set monthly fee or, if you’re over sixty-five, via a Medicare Advantage program. Because they are responsible for all your medical costs, HMOs have a vested interest in keeping you healthy and out of the hospital.

  Yo
ur medical care is usually better coordinated, and HMOs like Kaiser often score high on national ratings of quality and safety. They aren’t reimbursed per procedure, so you aren’t given treatments because they’re remunerative rather than good for you. HMOs often offer classes and support groups to help you to prevent falls or diabetes, thus helping you to stay in charge of your own health. Their doctors make their decisions using “evidence-based medicine”—providing treatments with proven benefits rather than those favored on the basis of a random combination of tradition, physician habit, “gut instinct,” reimbursement incentives, and pharmaceutical promotions.

  HMOs aren’t for everyone. Their doctors also juggle too many patients in too little time. Seeing a specialist requires a referral from your primary care doctor. An HMO doctor won’t prescribe a new drug because you saw an ad on television and it won’t pay to send you to the nation’s expert in your disease unless you can prove it to be “medically necessary” via a time-consuming process.

  When you’re young and healthy, or have a rare cancer that benefits from specialty treatment, these restrictions may persuade you to keep your options open. In a one-off health crisis, you (or someone who loves you) may have the time and energy to sift through Internet rankings and find a specialist who takes your insurance. But as you age, and your garden-variety health problems multiply, consider the time and energy costs of all that chaotic and fragmented free choice. Many Medicare Advantage programs have lower monthly premiums than traditional fee-for-service Medicare and others offer perks like exercise programs, dental care, and eyeglasses.