"If he asks where she is, please say she’s in the hospital.”
“I feel awful.” Myrna’s 83-year-old vocal chords, partially paralyzed from her stroke two years ago, labored with the effort of speaking. The staphylococcus aureus bacteria coursing through her bloodstream had colonized her heart and brain, draining what little she had left. Her wrinkled, withering body seemed to sink deeper into her hospital bed with each breath, the color of her skin fading to behlnd with her white bedsheets.
I think Myrna felt awful for most of the two years I knew her. A retired social worker, she had the short stature and native New York accent of my grandmother, which made me feel as though 1 had known her much longer than I had. She had come with her demented husband to California from Florida in the middle of 1995 to be closer to their son Richard. Decades of cigarette smoking (which she quit prior to moving west) and high blood pressure had damaged the smooth muscle lining the inner surfaces of her arteries. One afternoon two months after her arrival, a blood clot (“thrombus” in medicalese), which had formed in an ulceration in one of the larger arteries leading to her brain, broke off, slid forward with the flowing arterial blood, and lodged in her left middle cerebral artery, occluding it and killing the brain tissue behind it.
Most strokes and almost all heart attacks result from “thrombotic” events such as that which struck Myrna. Suddenly a large area of the heart or brain can’t get any blood carrying the oxygen and nutrients it needs to sustain life, and that area dies unless medical intervention, via mechanical displacement of the clot (angioplasty) or clot-busting drugs like tissue plasminogen activator (TPA), restores blood flow within a few hours of the occlusion. Because the left middle cerebral artery feeds the cortex governing the right side of the body, Myrna lost most of the function of her right arm and leg. That artery also supplies Broca’s area, the speech center, but Myrna lost her ability to talk for only a few hours. A slight permanent vocal chord paralysis is what lowered her pitch.
After two months of rehabilitation, Myrna could walk short distances with her walker, but it became apparent by this time that she would spend most of the rest of her life in a wheelchair. Meanwhile, her husband Ty, once a brilliant technical writer, had lost much of his memory. He had no idea what day or even what year it was. He did, however, take wonderful care of his wife, on whom he doted every minute Despite her disability she was never alone. After more than 60 years of marriage, she was losing her body, he was losing his mind — between the two of them they had one healthy human being.
I met them in February 1996. Janice, my favorite of the home-care nurses who assess and provide care to my home-bound patients, called me one day to ask a favor. She told me about Myrna and said the two of them felt frustrated that Myrna’s physician at the time had not been able to help her control her high blood pressure, so Janice asked me to take her as a patient. Although I discourage most patients from switching doctors, I knew her doctor and had to agree I would do better for her. A few changes in her medications brought her systolic pressure (the top number, the pressure in the arterial circulation when the heart’s left ventricle contracts and ejects blood into the aorta) down from consistently near 200 into a much safer range of 140 to 160.
But I knew I had entered this game late for her. I could fix her “numbers” — blood pressure, cholesterol, potassium, kidney function tests. But the clogged and damaged arteries remained, and because the entire body depends on clean plumbing to supply oxygen and other nutrients and to cart away our metabolic waste products, I knew one or more of her vital organs would fail before long.
Physicians in western societies see many people like this. Our high-calorie, high-fat diets and sedentary lifestyles lead to obesity, which brings on hypertension, high cholesterol, and diabetes, particularly in those with genetic predispositions to these problems, such as Polynesians and African-Americans. The consequent intravascular damage and fat deposition in the circulation clogs the arteries. Cigarette smoking accelerates this process. Some of these people die of a sudden occlusion of a major vessel leading to the heart or brain. More die like Myrna, piece by piece, as different organs succumb in succession She recalled to my memory Mr. Beal, a former teacher whom I had escorted to the end of his life after his wife’s death and a middle cerebral stroke left him lonely, aphasic (unable to speak), wheelchair-bound, and incontinent for 18 months. Kidney failure and congestive heart failure brought a peaceful end to his miserable existence.
Some physicians get a great deal of satisfaction out of treating and correcting the numbers of the Myrnas and Mr. Beals in their practice, but it’s more difficult to help them achieve some reasonable quality of life. I have trouble feeling good about what I accomplish in preventing further heart attacks and strokes when the patient still feels terrible.
My experiences have taught me a couple of things that I try to remember when I get frustrated. One is that I get a skewed picture of my patients’ moods because many of them, like Myrna, save most of their complaints for my ears. Robert, her son, told me many times that she enjoyed her life more while her numbers improved, if for no other reason than she worried less.
Another is that I am a doctor, not a magician. With careful attention to detail and some luck, I can make people’s lives better, but patients’ minds and bodies place limits on what I can accomplish. If I set realistic goals, I can get some satisfaction out of treating anyone, no matter how ill.
Older people often signal the beginning of a decline in their health with a fall, and that’s what Myrna did in March 1997. Although still weak on her right side from her stroke, she was able to walk around inside her condominium, located in a waterfront complex I had lived in during my first two years of practice, in my unhappier days as a bachelor. She went to the kitchen to get something to eat, lost her balance, and fell on her back and right side. She didn’t go to the emergency room until the next morning when the pain got worse. She hadn’t broken anything, but I knew trouble was coming. Within four months, the decline in her kidney function accelerated such that we had to hospitalize her to eliminate about two and a half gallons of excess fluid her kidneys had allowed to accumulate. When there is too much fluid in the circulation, weak old hearts cannot keep up with the extra work they have to do, so congestive heart failure develops. As the heart’s main pump, the left ventricle fails, fluid backs up from the left side of the heart into the lungs, causing fatigue and shortness of breath. This extra fluid in the lung circulation can become too much for the right side of the heart, so the right ventricle also fails, causing fluid to back up into the venous circulation in the body, starting with the legs because that’s where gravity pulls the fluid.
So the nephrologist and I admitted a tired, swollen, and depressed Myrna to the hospital. In addition to removing fluid by giving her medicines to make her urinate large quantities (“diuresis”), we also had to prepare her for dialysis. We thought within the next five to ten weeks her kidney function would diminish to almost nothing. Dialysis requires a direct connection between the arterial and venous circulation, known as an A-V fistula, at an accessible site. These fistulas can occur naturally in such hidden places as the colon and the brain; large ones can burst and cause sudden death. For dialysis, vascular surgeons create fistulas by connecting a large artery in the upper arm to a vein of similar caliber with an artificial vein graft.
But of course Myrna’s diseased blood vessels did not take kindly to surgery. Her first two fistula grafts clotted off, and after two painful recoveries and facing the prospect of a third, she began to talk about killing herself, and I could not help thinking I would wish for the same if I were she. We did convince her to allow us one more try, after the surgeon unclogged and revised her graft, we started giving her coumadin (a blood thinner that is also used as rat poison) to prevent clotting. Using blood thinners in people who fall makes us anxious, but the benefits of preventing more surgeries seemed to outweigh the risks, and for Myrna it worked out. She never had a serious bleeding episode, and her graft remained open for the rest of her life.
After all of the hassle of getting her graft done, she did not need it for another six months, as her few functioning kidney units (“nephrons”) refused to quit. In retrospect her kidneys seem mischievous, scaring us into doing three surgeries to prepare her for dialysis only to perform a mighty last stand to make us all look like idiots. But I only had to see her three times during that stable period, during which she ate well, went outside to the pool when the weather was nice, and sat for hours with her husband. They were so cute together, holding hands and trading clever remarks. Their handicaps blended together so well.
I have another patient, Jacqueline, who now finds herself in a similar predicament, but without the supportive spouse. She’s a syrupy-sweet 80-year-old retired teacher whose kidneys are now losing their decades-long battle with hypertension. Her husband Cliff has all of his wits about him, except perhaps when Jacqueline isn’t around. She found a used condom in their bedroom last year, and she hadn’t been present during its use. Or at least she doesn’t think so; her short-term memory lets her down much of the time now. She therefore relies on Cliff to administer her medications, which he does when he believes they are appropriate. Because my prescriptions have to pass through her human filter of a husband, I seldom know which of my recommended treatments she is getting.
The Cliff and Jacqueline situation is more complicated than that. He was trying to keep her alive while spending as little money as possible until her Medicare HMO insurance took effect on May 1. When that happened, he stopped having to pay the full cost of most of her medications, which would previously have cost several hundred dollars every month if I had not arranged for free samples of most of them. I am not, however, sure that she will be able to keep that insurance. Most Medicare HMOs have exclusion clauses in their contracts that prohibit certain preexisting conditions, and one of them is kidney failure. Dialysis costs too much money for HMOs to profit from patients who need it. It may be that I am supposed to alert the HMO that she has kidney failure and get her kicked out of the plan. Isn’t that an ugly position in which to be? I’m not going to squeal unless the HMO confronts me. I told Cliff and Jacqueline of this little problem so it won’t surprise them if it comes to pass.
Myma’s reprieve lasted until this past February, when she had a small heart attack, her heart failed again, and her kidneys shut down. We’ll never know which of these events caused the others, and it doesn’t matter except from an academic perspective. Her nephrologist dialyzed off the extra fluid, and she made a slow recovery. The final adversary that did her in arrived in early March.
Staphylococcus aureus resides at different times on the skin of most people, looking for a way in. It causes most of our skin abscesses. Preparing tissue containing the bacteria in a certain manner, known as a “gram stain,” makes the staph show up under the microscope as purple round dusters, like grapes. It likes to collect on foreign bodies, such as tampons and vein grafts. Staph causes toxic shock syndrome (TSS) when it colonizes a tampon that has been in too long. In TSS, the staph produces a toxin that, when it gains access to the circulation, causes a high fever, a bright red rash, and shock, a condition where all the arteries in the body dilate, causing a precipitous fall in blood pressure that endangers the vital organs.
On the day of Myrna’s last admission to the hospital, she became somnolent and confused. When her caretaker measured her temperature at 102 degrees, she sent Myrna to the emergency room. Myrna had pus coming out of her graft site. Cultures of her blood and cerebrospinal fluid both grew staph, and an echocardiogram (ultrasound of her heart) showed a fluffy vegetation on one of her heart valves, a sure sign that staph was growing there, too. After a couple of days of antibiotics, she had improved enough to tell me she felt awful. It was obvious she wasn’t going to win this battle, so we eased her pain a bit with morphine. On her fourth hospital day, she died.
The end of her suffering brought me solace, but to her husband, who could not form any new memories, it brought torture. Richard called me in early April to tell me that his father Ty was coming in later that day for a physical. “Please don’t tell him Mom died. If he asks where she is, please say she’s in the hospital.” For about two weeks, he had wondered aloud many times every day, “Where’s Myrna?” Each report of her death was news, and each elicited that profound sense of loss and helplessness that only the death of a spouse or a child can provoke. Giving up the hope that Ty would ever remember that she was gone, Richard and the caretaker made the humane decision to lie to him for the rest of his life.
During our visit, he conducted himself with his usual cheerful composure and wit, demonstrating that remarkable preservation of social graces we see in so many patients with profound memory loss from Alzheimer’s disease. He did not mention Myrna during the visit, and I think since she spent much of the last two years of her life in the hospital, Ty will always be comfortable with the notion that she is there. I wonder, though, if we can conjure up a better place for her to be in his thoughts for the rest of his life. I’ll try to come up with something.