Passing On
Cathy and Linda were the same age, grew up in the same place, and could have been girlhood chums. Instead, they met when Linda was terminally ill and Cathy, a hospice nurse, was assigned to ease her final days.
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For all practical purposes, the American hospice movement dates to 1969 and the publication of On Death and Dying, a manual by Swiss-born psychiatrist Elisabeth Kübler-Ross. For several years Kübler-Ross was an associate professor at the University of Chicago and a staff psychiatrist at its Billings Hospital, where she talked with hundreds of terminal patients. Ultimately she turned her findings into a theory of death psychology. A patient facing death proceeds through five stages, she said: denial, during which he refuses to acknowledge his diagnosis; anger, a phase characterized by blaming survivors for his impending death; depression; bargaining, or the attempt to prolong life by promises, often to deities; and finally, acceptance, the tranquil resignation to fate. In seminars and books, Kübler-Ross advocated training programs to enable lay and medical personnel to act as guides through these stages of the mind. By the time the first American hospice opened in 1974, Kübler-Ross had become a pop saint. She was given keys to the city in half a dozen locales, and she received eighteen honorary degrees in five years.
In actual practice, the five stages Kübler-Ross outlined turned out not to be stages at all, and even their formulator now waffles over the term. Most dying patients do experience denial, anger, depression, bargaining, and acceptance, but not in any sequence. The stages might more accurately be termed moods, because most patients experience them in an unpatterned way. Kübler-Ross’s credibility was further damaged by accounts published in the late seventies of her participation in séances in which widows purportedly achieved sexual union with the spirits of their husbands by coupling with a middle-aged guru named Jay Barham. The Barham scandal would perhaps have finished off Kübler-Ross as an influential figure had the hospices she advocated not been so useful to terminal patients and their families.
Kübler-Ross followed On Death and Dying with more books, and death became a much-published topic: more than four hundred popular works about death were in print in 1980, compared to less than one hundred ten years before. Along with discussion of death came hospices.
Two types of institutions had been developed by the British: freestanding hospices, where all patients are terminally ill, and hospital-based hospices, usually wards of an ordinary hospital reserved for terminal care. But Kübler-Ross noted that most terminal patients she spoke to expressed a desire to die at home, and she called for the creation of home care hospice services. The idea has caught on like wildfire, but probably not as a response to the wishes of the dying. In the U.S. the expense of hospital care—more than $400 a day for cancer patients at Houston’s M.D. Anderson Hospital, for example—is not borne by a program of national health insurance as it is in Great Britain. Some government and private insurance plans deny reimbursement for hospital care not aimed at healing the patient, and physicians are reluctant to authorize hospital admission for patients nearing death. In many cases terminal care may be most cheaply administered outside a hospital setting. The American medical tradition includes visiting nurse associations—the Dallas VNA was established in 1934—that have provided terminal care, if not the whole range of hospice services, for decades. The development of hospice care through VNAs was a logical step for both historical and fiscal reasons.
Logical or not, that development was viewed with suspicion in many quarters of the medical community. Two recent studies by the University of Texas Medical Branch in Galveston show that the hospice concept has won no great favor with Texas physicians. In both studies—one of UT Medical Branch staff, the other of practicing physicians across the state—only two of every five doctors interviewed expressed a desire for additional resources in matters related to death and dying.
One reason physicians have not taken up the hospice cause is that the very notion of terminal illness runs counter to their training and practice. For the best of reasons, physicians are sworn and accustomed to direct their efforts toward saving life. They are reluctant to prognosticate death, because even cases of advanced cancer are sometimes subject to spontaneous remission and there is almost always a method or medication or procedure that has not yet been fully explored. For the physician, the dying patient is not a financial burden—or a beloved relative.
Some of the medical establishment’s distrust arose from more mundane concerns, however. In the absence of both clear standards defining hospice care and any licensing or legislative requirements, the field was ripe for experimentation and abuse. Nursing homes have in some cases merely restyled themselves as hospices without expanding their services. Nobody knows how many projects calling themselves hospices exist in the U.S., and even the fledgling National Hospice Organization (NHO) is unable to give an account of its membership. Many of the organizations affiliated with the NHO have not established hospice operations yet, and some existing programs may not measure up to the NHO’s standards.
For their part, most hospice advocates are quick to point out that hospital and physician care is characterized by the commitment of expertise only. Medicine, in pursuit of technological miracles, has lost its human face, they say. Hospice programs aim to restore warmth, as well as familial and financial considerations, to the bedside manner of medical workers, and that’s why hospice programs, generally speaking, are hotbeds of scorn for the medical establishment. Nurses like Cathy Little see themselves as leading a movement for the reform of not only terminal treatment but the whole medical profession. The typical hospice worker is part scientific provider—nurse or doctor or social worker—part chaplain, psychologist, or consoler, and part agitator or visionary.
Cathy Little took two six-packs of Ensure from the room where donated supplies were stored and carried them downstairs to her maroon Pontiac Phoenix. She put the squatty orange-and-white cans onto the back seat, between her briefcase and the catheters in plastic packages, above the bags of Chux pads on the floor. Then she drove northeast, toward the suburban territory she works for the Home Hospice Program. Cathy was taking the Ensure, a milkshake dietary supplement, to Linda Mihlan.
Ensure would improve Linda’s life in two ways. She didn’t like the taste of her methadone, a bitter narcotic, even though it came with a grape syrup additive, and Ensure would give the drug a more palatable chocolate flavor. It would also give her concentrated nutrients. Nothing could keep Linda, who was already using a walker, from growing even thinner and weaker, but Ensure might slow down the process.
As Cathy drove, she mapped out the day ahead of her. She would give the Ensure to Linda that afternoon. Other patients in Garland would come first, and then patients in Mesquite and Balch Springs. Six weeks earlier, when all twenty of Cathy’s patients had been alive, Cathy sometimes had not returned home until nightfall. But even then she had planned her visits to Linda for late in the afternoon, in order to spend as much time there as Linda wanted. Linda was a special patient because she put Cathy to the test, not only as a nurse in a blue-and-white uniform but as a creature of empathy. Dying of cancer is not always painful, but Cathy knew that Linda Mihlan, with or without Ensure, was likely to suffer great misery. Cancer sometimes does not yield to even the best or most innovative interventions of the medical profession.
Cathy’s task as Linda’s nurse was essentially to supervise a regimen of pain control. After a month-long summer hospitalization Linda had been prescribed Dilaudid capsules and injections of Demerol, a painkiller, with Thorazine, a calmative. Pain control is controversial among doctors and patients alike, and the results in Linda’s case show why. Most physicians prescribe barbiturates with a sparing hand, lest patients develop dependencies, and many patients, believing that agony is preferable to addiction, hold themselves back from the medicine bottle. Linda had reached a point where relief came only when she was stuporous from high doses of her painkillers. When her injections were delayed she suffered both the psychic and the physical pain of withdrawal. In October, at Cathy’s request, Linda’s doctor began prescribing methadone for her.
Methadone is synthetic morphine, as potent as any painkiller available. Its euphoric effects have made it an alternative to heroin in medical therapy as well as on the black market. In the beginning it stupefies its users, and it is a powerful addictive agent even though, like any pain remedy, it is not effective for all patients or at all times. Linda’s body usually responded well to the drug, and it enabled her to resume some of those activities that pain had taken away. She entertained her children on weekends and, supported by a walker, helped in the kitchen on weeknights. Sometimes, in the wheelchair that substituted for muscle strength, she went with Chuck to modest restaurants or to flea market sales.
But even methadone is not infallible. It did not end Linda Mihlan’s—or Cathy’s—suffering. The crisis for Cathy came one afternoon in October when she made a scheduled visit to Linda’s home. Cathy’s ring at the door was answered by the household aide, who, before Cathy crossed the threshold, warned that Linda’s pain was out of control.
When Cathy walked in, Linda, at 29 just three years older than Cathy, was lying in a pink nylon gown atop an artificial sheepskin on the old green couch in her living room. On a coffee table at her side lay her usual appurtenances: a photo album, a Bible, and a bottle of diet Dr Pepper. The patient, now weighing less than one hundred pounds, barely noticed when Cathy approached and inquired about her condition in a quiet, tentative voice.
Linda didn’t hear because she was moaning. “What is happening to me? Why do I hurt? Somebody please help me, tell me why I hurt.”
“Linda, Linda,” Cathy said, kneeling beside the couch, “why do you think you are in pain?”
But Linda continued her pleading. “Can’t you give me a shot? Call the doctor! Do anything!”
There was no question, by that time, of giving Linda any injections. That route had already been tried and had lost its effectiveness. All that remained was to administer methadone. Cathy rose, measured the dose, mixed it with Ensure, as she had for weeks, and spooned it into Linda’s mouth. Then, kneeling, she checked her patient’s blood pressure and pulse, busying herself and comforting Linda while she waited for the drug to take effect.
But the drug did not take effect. Half an hour later, Linda’s emaciated frame was still curled with pain, her mouth still strained. She begged for a mercy that, she knew, would not be forthcoming.
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