by Katy Butler
WEIGHING MEDICAL RISKS
Taking advantage of what he calls Medicare’s “bumper-to-bumper warranty,” Doug von Koss has had cataract surgery and two knee replacements. They were great moves, postponing further disability, reducing pain, and keeping him happily driving and exercising. But with age, the risks of many procedures rise. “The physiology of the aging body is different: more vulnerable, and more susceptible to the adverse effects of drugs, tests, and operations,” cautions Iona Heath, MD, a former president of the Royal College of General Practitioners in the United Kingdom. “This is not ageism; it is person-centered care.” Make sure you understand the goal of any proposed treatment: Will it improve how you function day to day, or, in exchange for the hope of more time on earth, are you risking making an existing disability worse? Some people end up with worse pain after back surgery, an outcome common enough to have earned the name “failed back surgery syndrome.” Get a second opinion from a physiatrist or other informed non-surgeon, and before agreeing to surgery, try a year of intense physical therapy or a back pain management program.
Just as it’s a gamble to buy the first year of a new car model, it is dangerous to be a guinea pig for a medical innovation. Many new medical devices targeted at aging people enter the marketplace with little vetting, thanks to a loophole in Food and Drug Administration (FDA) regulations. Some of these grandfathered-in devices, like metal-on-metal hip implants that crippled patients by shedding metal shavings into their tissues, pose “great safety risks,” three eminent doctors warned in the New England Journal of Medicine. “Implanted body parts,” they noted, “cannot be recalled as easily as defective auto parts.”
Above all, guard your brain. It is the keystone of continued independence and freedom. People over sixty are much more vulnerable to “postoperative cognitive impairment” immediately after surgery, and are more likely to still be coping with confusion and memory difficulties three months later. Open-heart surgery requiring hours on a heart-lung pump sometimes fixes a heart valve while wreaking irreversible cognitive damage. You may consider it a poor trade-off to gain extra years of life if you will spend them incarcerated in a locked “memory unit.”
GETTING TO KNOW THE NEIGHBORS
Loneliness is a health risk. It’s common among older people when their close friends and spouses die, marriages and relationships break up, or grown children move far away. A quarter of Americans now live alone, and married women are quite likely to outlive their mates and experience widowhood. If your love of solitude has deepened into isolation, or you are cocooning within a couple, you might consider making a conscious effort to befriend or mentor younger people, especially neighbors. In a pinch, they may be of more practical help than a family member half a continent away.
My neighbor Paul Reck, an eighty-eight-year-old retired contractor, keeps a plastic container of dog treats by the open door of the garage where he builds scale-model replicas of yachts for boat owners. He’s gotten to know all the dogs that pass by on the sidewalk—and their masters. I know I can count on Paul for help putting together an IKEA bookcase or fixing a damaged tea kettle. Paul knows he can count on another neighbor, Barry, for help with his computer problems. Paul’s children live hours away. When he or his wife, Nancy, need help, neighbors will step in.
I suggest you consider your own ways to widen and deepen your next-door relationships and to transform them into sources of mutual support. Can you turn neighbors into friends, and friends into honorary siblings? If you’re single or widowed, might you rent a bedroom to a foreign student, invite a friend to become a roommate, or enter a pact with a friend to support each other in sickness and in health, the way married couples do?
Don’t discount more casual connections, like those formed by babysitting for a younger family down the block, picking something up for a sick friend, or taking in the mail and feeding the dogs when a neighbor goes on vacation. In the future, when you need a prescription picked up or a ride to the doctor, you may feel less shy about asking. Courtesy, neighborliness, and exchanges of favors are pleasant amenities earlier in life. For older people who want to stay in their own homes, they are survival skills.
We live in a society that fetishizes independence—a terrific goal for people in their twenties and thirties. But in later life, interdependence is well worth cultivating. Have you mostly been a “taker,” an “exchanger,” or a “giver”? If you’ve been a taker, think about becoming an exchanger—one who conscientiously keeps track and returns favors, even if a bit mechanically. If you’ve been an exchanger, consider giving once in a while without thought of return. If you’re exhausted by over-giving, consider cutting back on time spent with takers. You need reciprocal relationships now, not people who drain you.
I’ve noticed that people who live well in old age, and die well at home, have often found a “tribe” among their fellow quilters, singers, or church group members. When they get sick, the clan shows up to help, spreading the burden of caregiving beyond a single exhausted family member.
* * *
Above all, I hope you find ways to connect with others that give your life joy and meaning. The better you understand what makes your life worth living, the more fiercely you can keep it in mind as a guide to medical decision-making when you get closer to the end of life. “Elders worthy of emulation,” Doug von Koss once wrote, “know they will soon lose life—and so they generously give it away to those around them.” Doug leads a monthly singing group for men. He and some friends regularly perform mystical poems, learned by heart, to benefit local charities. When Doug had knee surgery, a favorite grandson flew out from Colorado and helped for five weeks until he could drive again. Friends a generation younger came over and made dinner. Two members of the all-male singing group he leads—his closest tribe—stand ready to drop everything in an emergency. Because he gives to others, others give to him.
KNOWING YOUR MEDICAL RIGHTS
Contemplating death while embracing life is a difficult balancing act in a culture that until recently didn’t want to discuss death at all. Finding the courage and wisdom to break this silence, with your doctors and your family, will shape how death ultimately finds you. In the words of TED talker Judy MacDonald Johnston, who helped care for two older friends dying of dementia and cancer, “Thinking about death is frightening, but planning ahead is practical and leaves more room for peace of mind in our final days.”
Not long after his near–heart attack, Doug got together with a dozen older people in the home of a friend. He signed papers giving his son the authority to make his medical decisions if he couldn’t make his own and filled out an advance directive, or living will, listing the medical treatments he’d want (and not want) if he were comatose or close to dying.
Most people have already been urged repeatedly to fill out these forms. And 70 percent of us haven’t. Perhaps it might help to think of an advance directive as not just a piece of intimidating paperwork, but an act of spiritual maturity.
Nothing is more profound than contemplating your feelings about how you want to be treated when you are dying, or how much suffering and disability you are willing to endure in return for more time on earth. Nothing could be kinder to people who love you than to give them clear guidance for the hardest decisions they may ever have to make. And little could be more empowering than protecting yourself from unwanted medical treatments that now, far too often, dehumanize modern death.
The struggle to control the deathbed has been amplified by modern medical technologies, but it isn’t new. Throughout history, doctors have sometimes failed to give adequate pain medication, or continued with painful efforts to ward off death, in direct opposition to the wishes of the dying. The medical historian Michael Stolberg recounts in A History of Palliative Care that in 1560, Philipp Melanchthon, a Lutheran minister and a close collaborator of Martin Luther, was close to death. His pulse faded, his hands and feet grew cold, and he drifted in and out of consciousness. His physicians repeatedly tried to
revive him, first rubbing his limbs, then trying to sit him up, and then anointing him with stimulants. The sixty-three-year-old Melanchthon protested, “Why do you hinder my gentle peace? Just give me peace until the end, it won’t be long now.” He died shortly thereafter.
In 1791, the Comte de Mirabeau begged his doctors for the gentlest death possible. “Give me your word that you will not let me suffer any unnecessary pain. I want to enjoy unreservedly the presence of all that is dear to me,” he said. A leader in the early stages of the French Revolution, Mirabeau, then in his early fifties, was dying of pericarditis, an inflammation of the sac surrounding the heart. A memoir by one of his doctors shows, wrote Stolberg, “just what torments the doctors allowed their patients to suffer out of fear of prematurely ending their lives, and in this case out of a lack of agreement among themselves”—still a familiar problem.
When Mirabeau’s pain grew so severe that he could not speak, he asked for a piece of paper and wrote down the word dormir (sleep). He was pleading for opium, but his doctor, P. J. G. Cabani, pretended not to understand. He relented later that night, but a second doctor in attendance said the time had not yet come. Hours later, when the two men reached agreement, it was too late to get the drug compounded and brought to the chateau before Mirabeau died. In agony, he cried out, “I’m being cheated,” and added “with a mixture of rage and tenderness . . . Oh, the doctors, the doctors! Were you not my doctor and my friend? Did you not promise me you would spare me the pain of such a death? Do you want me to take with me my regret that I trusted you?” These were his last words and, Cabani wrote, they “rang unceasingly in [my] own ears for a long time to come.”
The dying and their families say similar things today, and advance directives are the first line of defense. Many people think they can refuse medical treatment only if they’re in a coma or within six months of dying. It’s also widely believed that the law and the Hippocratic oath, especially the phrase “do no harm,” force doctors to prolong life. Neither is true. The United States Supreme Court has affirmed, and all major medical associations agree, that all competent adults have the legal right to refuse any form of medical treatment, or to ask for its withdrawal, at any time, for any reason. It isn’t suicide, assisted suicide, homicide, or euthanasia. It’s letting nature take its course, and it’s your legal and moral right.
* * *
For clarifying these constitutional rights, we can thank the parents of a young woman who worked in a cheese factory in the 1980s. Her name was Nancy Cruzan, and she was twenty-five. On a cold January night in 1983, she was driving home alone from a bar outside Carthage, Missouri, when her car skidded on ice and plunged off the road. She was thrown from her car and landed facedown in a water-filled ditch. Paramedics arrived about fourteen minutes later, pounded on Nancy’s chest, shocked her heart until it resumed beating, and forced air into her lungs until they began to rise and fall. But Nancy was too brain-damaged to ever again speak or recognize her family. Incapable of eating or swallowing, her body was kept alive by a feeding tube in a state-funded nursing home. But the “self” that her family recognized as Nancy Cruzan was gone.
Six years later, against opposition from the state of Missouri, her devout Catholic parents petitioned the United States Supreme Court for permission to remove the feeding tube that kept their daughter suspended in what one of her doctors called “a living hell.” A deeply divided Supreme Court affirmed that all intellectually competent people have the right to refuse medical treatment. A feeding tube, the high court clarified, is a medical treatment. But Missouri could require “convincing evidence” of Cruzan’s wishes. (This, and similar rulings, gave rise to the living will.) In 1990, a Missouri lower court accepted additional testimony and permitted the removal of the feeding tube. A day after Christmas, seven years after her fatal accident, Nancy Cruzan was released from the long, technologically interrupted process of her dying.
The Cruzan decision introduced many laypeople to one of the four pillars of medical ethics, that of patient autonomy: the right to determine and refuse medical treatment. (The other three pillars are treating patients justly; benefiting them; and not harming them.) A doctor who agrees to end an unwanted treatment is not violating the Hippocratic oath. She is honoring your autonomy.
The practical reality, however, is that if you don’t have the right paperwork, the default protocol in most emergency rooms will be to do everything possible to ward off death, even when doing so is fruitless and amplifies your suffering. Treatment often does not stop until someone says “enough is enough.” The following two documents will help you, or those who speak on your behalf, to do so with confidence.
The Durable Power of Attorney for Health Care appoints a medical advocate or decision maker (technically called a “proxy,” “medical power of attorney,” “health care agent,” or “surrogate”) to speak for you if you can’t speak for yourself. The ideal person lives nearby, knows what matters to you and is willing to assert it, is willing to drop everything in an emergency, gets along with people, and has a strong backbone. Many people choose a spouse or child, but the best choice isn’t always a family member. Because I fear that my husband, Brian, may be emotionally overwhelmed if I am gravely ill, I have chosen a friend whom I’ve known for thirty years. She keeps a cool head, follows through on her commitments, understands my values, communicates clearly, and has no problem with being assertive.
A Living Will or Advance Directive is the next line of protection. This boilerplate document usually covers only moral and medical dilemmas that arise if you are comatose, close to death, or “unlikely to recover.” They rarely cover deactivating internal medical devices like defibrillators, or how to make decisions in case of dementia. You can amend yours however you want to, as it will mainly serve as an informal guide for your medical advocate. If you want stricter, more binding limits placed on medical treatment, you or your advocate should ask your doctor to fill out a do-not-resuscitate order (DNR) and a form called a POLST or a MOLST (Physician or Medical Orders for Life-Sustaining Treatment). These documents are signed by a doctor and are more scrupulously honored than advance directives. They are appropriate for all people in frail health, and are fully discussed in Chapter 5, “The House of Cards.”
You can get free advance directives from your health plan, and online from the Conversation Project or Mydirectives.com, which will email copies to anyone you want informed. If you are hesitant, I highly recommend “Five Wishes,” available for five dollars from AgingwithDignity.org. Clear and simple, it will help you imagine and describe your vision of a “good death,” asking, for example, whether you’d like your body massaged with oil, and what poetry, if any, you’d like read to you. Here are some samples:
My Wish for How Comfortable I Want to Be
(Cross Out Any You Do Not Want:)
• I wish to have warm baths often. I wish to be kept fresh and clean at all times.
• I want my lips and mouth kept moist to stop dryness.
• I wish to have religious readings and well-loved poems read aloud when I am near death.
My Wish for How I Want People to Treat Me
(Cross Out Any You Do Not Want:)
• I wish to have pictures of my loved ones in my room, near my bed.
• I wish to have my hand held and be talked to when possible, even if I don’t seem to respond to the voice or touch of others.
• I wish to die at home, if that can be done.
My Wish for What I Want My Loved Ones to Know
(Cross Out Any You Do Not Want:)
• I wish to be forgiven for the times I have hurt my family, friends, and others.
• If there is to be a memorial service for me, I wish for this service to include the following (list music, songs, readings, or other specific requests that you have).
Forms are only symbols of the conversations behind them. More important than paperwork is making sure that your family and closest friends accept the reality of death an
d commit to following your wishes. When there is no consensus within the family, hospitals often listen to the loudest voice in the room, which often means continuing unwanted treatment. To avoid this, I recommend you talk around the kitchen table with people you love, perhaps every New Year’s day, sharing stories of deaths that have frightened or inspired you. It may take some family members years to get comfortable with the reality of your eventual death, so give them time but revisit the subject regularly. Go beyond the dry details covered by advance directives, and talk about your ultimate goal: a “good death,” whatever that means to you. Do you want to die at home with your dog on the bed? Do you hope to be conscious enough to give your last words and final blessings, or are you more concerned with pain control, even if it makes you drowsy? Do you want to leave a good emotional legacy, by making sure that loved ones are not traumatized by the circumstances of your death? One single woman I know met at a cafe with the friends who’d agreed to be her health care agents and hashed out the details for over an hour before filling out the forms over muffins and coffee.
Once you complete the forms, don’t just leave them in a file at home. At a minimum, send copies to your primary care doctor or health system, to family members, and to anyone you’ve named to be your advocate. If you simply can’t bear to fill them out, I suggest handwriting a letter to whomever will probably make your medical decisions—and mailing it. Tell them what makes your life worth living, and what medical care you’d decline if you could no longer live such a life. Is it crucial to you to love and be loved, to express yourself in words, to garden, to feed yourself, or to sew? What degree of dependence, loss of freedom, pain, or discomfort would be too much to bear? Contemplating your future vulnerability and accepting your mortality shouldn’t be minimized as merely checking boxes on a legal form. It is a modern rite of passage.