The
Art of Caring: by Alexandra Hoffman |
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In our latest leap into the stuff that science fiction used to be made of, we are proposing to extend the human life span an additional 50 to 100 years. But whether we survive to 70, 90, 150 or 200, sooner or later we are all going to die, and for many of us, how is as great a concern as when. And by how, I don't mean, "what will we die of?," but rather, "what kind of death will we have?" Will we suffer? Will we lie helpless, in pain, dependent upon others for even the tiniest need? Or will we be allowed the gift of a gentle death? Despite all the discussion among scientists, philosophers and the general public regarding the need to prepare physicians to deal with issues of death and dying, medical school curricula still focus on curing, with little attention paid to what the physician can and ought to do when cure is not possible. And so, we continue to turn out doctors who are incapable of recognizing when aggressive management is inappropriate. Perhaps the solution would be to put veterinarians on medical school faculties to teach the art of caring for the dying and their families. |
"I'm not afraid to die." |
During the past year and a half, two of my dearest friends died of cancer. One was a woman I'll call Claire. The other was my cat, Tatiana. The difference in the way their illnesses were managed and, ultimately, in the way they died, illustrates my point. When Claire was first diagnosed with esophageal cancer two-and-a-half years ago, she said to me, "I am 80 years old. I've lived a full life. I'm not afraid to die. I'm not going to go through treatment." But when the doctors suggested light chemotherapy ("you won't lose your hair and you won't be sick") she agreed to try it. She tolerated it easily, and went on as she always had, entertaining friends, shopping, loving her children and her cat. Her biggest frustration during the year that followed, at least as far as her health was concerned, was finding the right adjustment for her hearing aid. And when, four months into her treatment, a CAT scan showed the tumor had shrunk to half its original size, we celebrated. I forgot, most of the time, that she had cancer. Then, seven months later, she came to dinner and, in the course of the evening, told me that another CAT scan had revealed a spot on her liver. I'm a medical writer by profession. I knew that esophageal cancer was rarely curable, and I knew that a metastasis, particularly to the liver, was almost certainly the beginning of the end. Everything inside me turned to lead. |
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Once more, she insisted she would not undergo chemotherapy. But she said there was to be a meeting that week with the doctors and her children to decide the next steps. I wasn't at that meeting, of course, and Claire was very vague about it. She had never liked to know specifics about her health, preferring to leave it all to the doctors, and in that, she was not unusual. But something obviously happened there to change her mind, because shortly after that she started heavy chemotherapy after all, and she never came to dinner again. Within a week after she began that treatment, she was an invalid. Violent and unexpected diarrhea along with extreme weakness kept her housebound much of the time. She had little appetite. She lost her hair and got a wig. Exhaustion sent her to bed earlier and earlier so that, unless I could call her before six, I would wake her -- this woman whom, once, you could call at 11 pm and only disturb her because she was watching Charlie Rose. She had to have attendants all day, and a visiting nurse came regularly. She began having occasional mental lapses. And still, the treatment went on. Finally, on Thanksgiving weekend of that year, four months after she had begun heavy chemotherapy, one of her sons came to visit and found her unable to move or speak or hear anything at all. |
"...what was it all for?" |
She was taken to the hospital and, ultimately, to an inpatient hospice where, at last, she was given peace for the time she had left. She had regained her ability to speak and could hear at least as well as she had before, but she still could not walk, and she wore a diaper because she was incontinent. She died on New Year's morning, and my only thought then and since has been, what was it all for? For a few extra months of drawing breath, but too sick and weak to go to a movie or have dinner with a friend? Why couldn't they have just made her comfortable and allowed her to die with her hair and her dignity? Tatiana's story is far kinder. At fifteen, she was healthy and happy and behaving more like a kitten than a geriatric cat when she suddenly began to exhibit intermittent muscle weakness and lameness, first on one side, then the other. A neurologist's examination and x-ray turned up negative, but a blood test showed a high white count, and our veterinarians, suspecting meningitis, put her on antibiotics. Over the next three weeks, her white count came down, but she seemed to be eating less, and then, one night, as she slept in her customary place on the pillow above my head, I heard a faint whistling sound and realized it was her breathing. I touched her, and it turned into a purr, but during the next two or three days the whistling became more frequent, sometimes accompanied by soft little moaning sounds that became worse each day. She would sit for hours in the corner of the couch, barely moving, breathing at almost twice the normal rate at times, refusing to eat, and I knew she was dying. |
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Back we went to the vet, who did a series of examinations, including a sonogram of both the upper and lower body that provided the answer: a tumor in the loop of the bowel, likely some metastases, the lameness possibly caused by toxins from the cancer or from the tumor pressing on a nerve. "If you want us to, we could go in and try to take out the tumor," the veterinarians said. "But she's over fifteen years old. She might not survive the surgery. Do we really want to put her through that?" So I took her home and tried to make her comfortable, but she still wouldn't eat or even drink water, and now she was incontinent. Her suffering was too great for me to bear, so I brought her back to the hospital one more time. Throughout the last week of her illness, and in the days and even weeks that followed her death, the veterinarians and everyone on the hospital staff were so incredibly kind. They called. They sent a beautiful sympathy note. They made a contribution to research in Tatiana's name. These were people who attended to dying animals almost every day, yet they retained their concern and their compassion for each individual one. They gave my Tatiana a good death, and they treated me as if they shared equally in my grief. |
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I am not advocating for or against euthanasia. That's another issue altogether. I'm advocating hospice of course, but in time for it to serve its purpose. Hospice is an approach to care of the terminally ill that begins with recognizing when therapeutic interventions are no longer of use. It offers, instead, pain relief and symptom control, along with a full range of medical, nursing, psychological and social services for both patient and family in the home, whenever possible. Medical schools must teach physicians that hospice care is medical care, and a far better level of care than continuing to prescribe powerful drugs and surgical procedures that produce devastating side effects when there is no hope that they can be effective. Physicians need to understand that it is all right to let go, that even when they cannot cure, they still have something of enormous value to offer. They can give comfort, support and wise counsel to the patient and the family, and so allow the patient a kinder death.
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