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Luck Of The Dying
My mother’s death cost $4,601.91. Medicare paid almost all of it; her Medigap policy covered the rest. Mom incurred no out-of-pocket expenses except for the Taco Bell crunchy beef tacos she kept asking for in her last weeks but barely touched. As a nurse who has seen her share of death—the good, the sad, the horrific—I can attest to my mother’s luck in hers. She died of cancer at age eighty-four. It wasn’t the catastrophic kind that took my sister from her school-age children after three years of nonstop but ultimately futile treatment. My mother’s cancer was the late-blooming variety that occurs when the body simply grows too old to catch and correct every little mistake. Mom dated her illness to June 2, the day she was diagnosed. During the month of May, it seems that she’d been spending most of each day just lying on the couch until she forced herself out the door to pick up her fourteen-year-old granddaughter after school and go with her to the fitness center. Then one day in late May, she realized she didn’t have the strength to drive across town in traffic, walk the treadmill, or ride the stationary bike. And the pain that she’d attributed to stress (worries about her motherless grandchildren) or her heart (heart disease was what everyone in her family died of) was getting worse and unresponsive to her usual over-the-counter pain remedies. The night of May 30, which fell during the Memorial Day weekend, it got so bad she thought she was going to die. But finally the pain eased, and she slept. Next morning she phoned to tell me she’d decided to go to the doctor right after the holiday, on June 1.
My mother had been a widow for five years. Her three surviving children, all of whom lived out of state, worried when she didn’t answer the phone. She delighted in telling us, "Remember, I have a life." While she enjoyed the freedom and privacy of living alone, she’d also formed a circle of friends who ate out, watched old movies, and attended Bible study together. Mom and I had come to an understanding about how I should respond to her reports on her health: She would tell me how she was feeling if I didn’t express alarm, and she’d ask for my advice if I didn’t insist that she take it. I was not to force her to go to the doctor or feed her fears about "the pain in my chest that’s gone now." Yes, I worried sometimes, but I knew she had decent doctors she would consult when and if she wanted to. She took digoxin for mild congestive heart failure and the supplemental thyroid she’d been on for years. But she didn’t stick with the alendronate for her bones (too expensive), anticoagulant (too dangerous), antidepressant ("I don’t have any energy, but it’s not because I’m depressed"), and other drugs she had been prescribed along the way. That was fine with me. I’d researched them all and concluded that they had little to offer her. She’d never had a mammogram or colonoscopy and had lived for decades with a couple of wildly abnormal liver function tests, discovered incidentally during a blood chemistry screening. She steadfastly refused further workup. Actually, she never refused. She just never went back. Her only hospitalizations had been for childbirth and, at age seventy-five, for emergency surgery after shattering her left shoulder in a freakish fall on the sidewalk. To her, taking good care of herself meant exercising, watching her weight, going regularly to the dentist and eye doctor, checking her blood pressure at the drug store, and ordering whatever nutritional supplements her favorite radio personalities were promoting. She was ready to die, she often told me, but wanted to die healthy. Now she was about to show me just what she meant.
As luck would have it, Mom’s doctor (it had been more than a year since her last appointment) was moving offices over the Memorial Day weekend and could not be reached. So Mom decided instead to go to an urgent care center run by St. Anne’s, the hospital where she’d had her shoulder surgery—and where my sister had died. Her friend Joyce would take her, she told me. I fretted and paced, fearful that some doc-in-a-box would swamp my mother with a tidal wave of tests and procedures, perhaps even demand to know why she hadn’t seen her doctor sooner. I was wrong. Dr. O., the physician who picked up my mother’s admission form on June 1, had started out as a military corpsman, then became a registered nurse before deciding on medical school. He had the weathered look of a battlefield vet, yet the compassion hadn’t been sucked out of him. "I undertook a lengthy discussion with the patient...," he wrote in his note after their first encounter. He did more than that. He won her confidence and gratitude by taking time (the best medicine) to look her in the eye and listen to what she said. In fact, against all odds in an urgent care setting, he saw her three days in a row. By the second day, June 2, he’d determined that she had metastatic cancer affecting her stomach, liver, and lungs. "I discussed this at length with her," he wrote. "The patient is obviously upset...I will talk to her again tomorrow." Meantime, he prescribed stronger pain pills, phoned me long distance, then met with one of my brothers who had come immediately on hearing the news. For the next two weeks, until he handed us over to hospice, Dr. O. became the family’s safe harbor. He returned our phone calls, answered our questions.
Mom, who had surely known she was seriously ill for some time, was clear from the start that she wanted home hospice care. But she wasn’t ready to rush things. It was important to her to see an oncologist, not because she sought treatment but because (and I’m speculating here) it would help her absorb the news that she had terminal cancer and would not, after all, die of heart disease as she’d expected. On June 5, my brothers and I convened at Mom’s house. Tim had combed through his benefit package at work and discovered he could take two weeks of family leave. He would stay with Mom until I arranged to return. I’d fly back on a one-way ticket and stay for the duration. John would commute as often as he could. Mom told us her time would be short, and we believed her. My mother’s last trips outside the house were to the bank on June 8 (there were gifts of money she wanted to make) and her hairdresser on June 12. Thanks to a referral from Dr. O., Mom was admitted to home hospice on June 17. But there was still her date with the oncologist on June 21. By then she felt weak enough to accept Joyce’s loan of a wheelchair. "Are you sure you want to bother keeping the appointment?" I asked. Insensitive question. Of course she did. Still, the long wait with Joyce and me in the cramped little exam room was enervating for her. And when the oncologist finally appeared, the consultation was stilted and brief; Mom was, after all, already a hospice patient. So there was only a cursory exam and no referrals for labs, imaging, or treatment. Yes, the records from St. Anne’s had arrived. Yes, Mom had made a good decision to seek palliative care. That was that. We drove home in silence. Now the work of dying began in earnest. The whole family was soon on a first-name basis with Karen, Louise, Bonnie, and Cat—our home hospice team. There were symptoms to address; plans to develop; and drugs, equipment, and supplies to order. The main hospice number was affixed to each phone in the house, a green sticker ("Hospice Patient") placed on Mom’s Medicare card, and copies of her living will run off at Kinko’s. I settled in, sharing my mother’s double bed with her until she was ready to transfer to a hospital bed with an alternating pressure mattress. We entered a timeless state marked only by the rising and setting of the sun; phone calls; and visits from family, friends, and the hospice team. As the days wore on, my mother spoke less and less, but when she did, it was with grace and humor. "Every day I lose something," she remarked a little sadly on June 27. It was true. There was the day she could no longer get from her bed to the living room couch. A couple of days later she couldn’t make it to the toilet or stand at the bathroom sink to wash her face. One day, the hand holding her tube of "Love That Red" dropped it back into the purse she kept beside her, and Mom admitted she couldn’t apply her own lipstick anymore. Hardest for me was the day I had to tell her that I wasn’t strong enough to help her transfer to the bedside commode that hospice had provided. "What will I do when I have to go?" she asked me. "Just go," I said in despair. "The bed is protected." When Louise, our nurse, suggested a catheter, I agreed. "Have you asked your mother?" she countered. "No," I answered, sheepishly. I’d forgotten; Mom still had choices. She said no to the catheter. So we started using disposable diapers. I cut the backs off the four cotton-print dresses she’d chosen for her last wardrobe, to keep them dry. There was no chaos, no heroics, and precious few changes in Mom’s normal surroundings. It took courage to accept ordinariness at such an extraordinary time. I had to trade my comfortable role as seasoned nurse for the vulnerability of a daughter about to lose her mother. On June 28, Mom roused momentarily and said, as if to herself, "I never knew it would be so hard." What did she mean by that? She’d been sleeping most of the time, her pain fairly well controlled with oral medications. One of the booklets hospice had left with us was titled, "Preparing for the Final Stages." After a detailed explanation of how the body shuts down, it said, "These physical changes are a normal, natural way in which the body prepares itself to stop in an orderly manner..." It was work, and my mother was hard at it. "I want to go home," she said on June 29. Later that morning, when she choked on the few drops of water ("so bitter") I’d given her to erase the taste of the liquid narcotic, she said what might have been her last words: "No more." Although we’d faithfully catered to her whims (a few spoonfuls of oatmeal or Campbell’s soup, a bite of beef taco), we never encouraged her to eat or drink. I’d even found a way to tell her that some people simply decide not to do either as they’re getting ready to die. It hastens the process and might spare them symptoms such as nausea and stomach pain. Although she’d made no reply, I knew she’d heard me. On June 30 the most basic of the shutting-down processes began, accompanied by deep groans—what I thought of as the sounds of a woman in labor. Though she never moved, her eyes—vacant now—would occasionally fly open, such as when the subcutaneous port for pain meds was placed in her thigh. Finally, pneumonia set in, causing long rattling coughs and short panting breaths. This was our test. Surely now was the time to do something. We hovered, offered her our permission to go, but resisted the almost overwhelming urge to call for help. "She sounds like she’s drowning!" a startled friend said plaintively. "Yes," I replied. But looking at her hands and face, I was reassured to see how tranquil they were. At about 7 p.m. the next day, July 1, my mother drew two last quiet breaths and died "at home and at peace after a short illness," just like that wistful cliché.
I’ve been reflecting on my mother’s last illness as both nurse and daughter. I am grateful that her death, after a full life, did not bankrupt her spiritually or financially. Her body was not wasted by debilitating treatments capable only of keeping her alive a little longer. Her decline began just weeks before her death. She benefited greatly from the palliative care she sought when she could no longer cope with her pain, weakness, and other symptoms. Nortin Hadler, a professor of medicine and critic of medical research and practice, has concluded, based on analyzing Medicare data, that "excess spending and excessive care transfer considerable wealth but do nothing for the well-being or satisfaction of the elderly." Earlier this year the Washington Post reported that Medicare coverage has been extended to include implantable defibrillators for more than half a million Americans with congestive heart failure at an initial cost of $30,000 a patient, "the most expensive single decision in Medicare’s history." Given her weak heart and irregular heartbeat, my mother would have been eligible for the cardiac device. But according to a Duke University study quoted in the Post article, there’s an 80 percent chance that she never would have required a shock to her heart muscle, and a 14 percent chance that she would have developed an infection or other complication if the device had been implanted. Would this Medicare "benefit" have improved or lengthened my mother’s life? That’s a moot question now. But I feel sure the answer is no. I’m not an epidemiologist or scientist, but I’ve practiced as a nurse for thirty-five years, twenty of them as a family nurse practitioner in a poor urban community providing, among other things, long-term care in their homes to the elderly and dying. Close observation of my patients’ experiences with health care taught me that less is more when it comes to prescribing pills and procedures. Yet we tend to overdo for patients, which often leads to problems. At the same time, we won’t pay health professionals for the time needed to get to know their patients and dispense the wisdom they have accrued through their years in practice. More often than not, what did my patients the most good was nursing care supported by doctors who didn’t overdoctor. My mother had no qualms. She chose hospice because she wanted comfort, control, and a sense of safety. Although we would have paid any price for our mother’s care, she got exactly what she wanted for less than $5,000. I agree with the writer of Ecclesiastes that there is a time to be born and a time to die. When my time comes, I hope I’m lucky enough to fall into the hands of someone like Dr. O. and die healthy, like my mother.
Veneta Masson (masson{at}erols.com), a registered nurse, is the author of Ninth Street Notebook—Voice of a Nurse in the City (Sage Femme Press, 2001).
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Mom’s Way
Mom Meets Dr. O.
