By Tracie White
Illustration by Jeffrey Decoster
“We have a difficult decision to make together,” Glenn Chertow, MD, tells his patient. It’s early July. He’s holding Stanley Chang’s hand in the examination room at Stanford Hospital & Clinics. Chang, who asked that his real name not be used, is 79 years old and his kidneys are failing. He’s a slight man, maybe 110, 120 pounds. He’s lost much of his appetite and feels fatigued most days.
“You have options,” his doctor says, his words translated into Mandarin by a live translator who is participating through a web-based videoconference. “Even though you’re 79 and that’s not young, based on your overall good health, I think you may live a good healthy life for many years.” Physically Chang is still strong. He’s independent, lives at home with a supportive wife who sits next to him in the examination room. Both have their legs crossed and their brows furrowed. Both are frightened.
Chang is not a candidate for a kidney transplant. The waiting list is too long, five to seven years, and by then he’d be in his mid-80s.
“If I thought you were going to pass away in three or six months, I might not recommend going through the inconvenience of dialysis to extend your life,” says Chertow, chief of the Stanford nephrology division and professor of medicine.
Dialysis is a life-extending procedure that for most patients with kidney failure involves sitting in a chair three or more times a week connected to an artificial kidney machine. Small amounts of blood are slowly cleansed by exchanging fluid and electrolytes across a membrane during each three- to four-hour session.
“You don’t need dialysis today or tomorrow or next week,” says Chertow.
“But you don’t want to wait too long to decide,” he says. “I’ll see you back in a month.” For the average person, the decision of whether to go on dialysis for kidney failure seems to be a simple one. The common perception is that you have no choice. If your kidneys have failed, without dialysis your body can’t cleanse itself of the by-products of metabolism, and these can be toxic. Now, 50 years after the first maintenance dialysis treatments became available in 1960, a growing body of research is challenging that tenet of care, providing evidence that, particularly for the frail elderly who suffer from multiple severe ailments, the decision to start — or to stop — dialysis is more complicated.
As the fastest-growing age group in the country to start dialysis is now those over the age of 75, many are questioning whether a better understanding of the effects of dialysis on the elderly could result in a more judicious use of the procedure, potentially improving quality of care and lowering health-care costs.
The medical community has begun to debate how this decision should be made. The discussions reflect a new tension rending America: While modern medicine builds on its incredible success at extending life, a growing movement seeks to improve the way Americans die.
Dialysis is a burdensome and expensive process that costs about $75,000 to $100,000 per patient per year. While not a cure, it is an amazing feat of technology that has kept millions of people alive for years, sometimes decades. Without functioning kidneys, the buildup of fluids and waste products in the body can lead to failure of key organs and many adverse symptoms. When dialysis technology first became available, access was limited to those who could afford to pay for it. In 1972 Congress passed legislation that extended benefits under Medicare to all Americans with kidney failure regardless of age or ability to pay. Early on, it was assumed that dialysis would be medically suitable only for patients under the age of 54 who were free of other severe illnesses because of its stress on the body.
Today, the population of patients covered under the program presents a radically different picture. The average patient is much older and much sicker. The median age of the 400,000 American patients whose dialysis is covered by Medicare is now over 64. Among those patients who begin dialyzing in their 80s and 90s, nearly half have congestive heart failure and one-third have diabetes or cardiovascular disease, according to an October 2009 commentary by Yale University nephrologists Peter Aronson, MD, and Felix Knauf, MD, in the Journal of the American Society of Nephrology.
While growing research shows dialysis provides only modest benefit to the oldest, sickest patients, most doctors have been willing to start dialysis at any age, Aronson and Knauf write.
That may be changing.
“We’ve been putting all our seniors with kidney failure on dialysis every single time because we’ve had insufficient information,” says Alvin Moss, MD, professor of medicine at West Virginia University who chaired the committee that wrote the Renal Physicians Association’s guidelines on starting and stopping dialysis: Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis. An updated edition expected in October includes new studies that spell out the benefits and drawbacks of dialysis for the frail elderly with multiple severe diseases. “But the questions now for each individual patient are, ‘Will it lengthen life? Will the quality of care improve?’ We don’t want to torture our seniors.”
For patients with kidney failure at the Pacific Coast Manor, a nursing home in Capitola, Calif., dialysis determines the structure of their days. At 7 a.m. a van picks them up and takes them to the nearby Satellite Dialysis center.
Will it lengthen life? Improve its quality? “We don’t want to torture our seniors.”
For three to four hours, these seniors — most of whom are over the age of 80 and have other ailments such as heart disease or high blood pressure — sit back in big, black, padded recliners, their bodies attached by clear tubes to an artificial kidney machine. Some have arthritis, back pain, circulation problems. The tubes turn red as their blood streams out through one, and back in through the other.
On one particular morning at the dialysis center, 10 patients fill up about half of the chairs. Most are seniors resting quietly in reclining chairs, watching TV, sometimes dozing. Several are from nursing homes. A woman in her 80s with short, gray hair is curled up under a crocheted blanket with slippers on her feet, knitting to pass the time.
It’s a scene that gets repeated in centers across the nation with patients returning week after week, year after year. Some patients continue for decades.
The Pacific Coast nursing home residents, some in wheelchairs, return home at 2 p.m. They’ll repeat the process in two days and then two days after that for the rest of their lives or until they choose to stop.
It’s a difficult routine for the older seniors at the nursing home, says Terri Jones, the director of nursing there. “They come back really tired. They lie down and go to bed. I haven’t seen anyone feel better, just weaker.
“It sustains life, but generally, for most patients it doesn’t restore health.”
“Some patients do choose to stop,” Jones says. “Some of our 90- and 100-year-old patients don’t want dialysis at all. They’ll choose end-of-life care with our staff or with hospice. They know their bodies are starting to break down.”
Evidence that the frail elderly with severe ailments might not always benefit from dialysis was supported by a study led by Manjula Kurella Tamura, MD, assistant professor of nephrology, that appeared in the Oct. 15, 2009, issue of the New England Journal of Medicine. Chertow was a co-author. The study, an analysis of seniors on dialysis living in nursing homes across the country, found that patients tend to experience a significant decline in their ability to perform simple daily tasks such as feeding themselves, getting dressed or brushing their teeth after starting dialysis.
Why the decline? In some patients, kidney failure may be a sign of the dying process, and this may explain why functioning continues to decline despite starting dialysis, Kurella Tamura says. If a patient is dying of cancer or heart disease, the kidneys, along with other organs, will naturally fail. Because kidney failure is not what’s killing them, dialysis won’t help.
“In some of these patients dialysis may be prolonging suffering rather than prolonging life,” she adds.
The hope is that, with new research uncovering the actual affects of dialysis on the elderly, doctors and patients can hold more fruitful discussions when deciding whether to start the procedure, she says.
“There should be an individualized approach that takes into account the patient’s goals of care along with prognostic information,” she says. “Some patients may choose a palliative treatment approach, and others may choose dialysis. Regardless of what treatment they choose, this information can help patients prepare for a decrease in their abilities to function and plan for that.”
For Chang, the decision is just beginning. In the coming week he’ll grow agitated and uncomfortable as he realizes dialysis means that he would no longer be able to fly to China to visit his daughter. That his diet would be severely restricted. He’d be spending a significant portion of his remaining life sitting in a chair hooked up to an artificial kidney machine.
“No one wants to start dialysis,” says Chertow, who has held these sensitive discussions with patients many times. “It sustains life, but generally, for most patients it doesn’t restore health. They don’t feel well. The question for doctors is, how do we provide sufficient information to the patient that enables them to make an informed decision while being as optimistic and as realistic as we can about the future. We can’t lie to patients and say everything is going to be hunky-dory.”
But Chertow remains optimistic for Chang. He’s not in a wheelchair and has no difficulty getting around. He lives independently. He has no heart failure, no liver disease.
“He’s not in the best of health, but he’s OK,” Chertow says. “The decision is even harder for someone who has cancer and is getting chemotherapy. Maybe they’ve decided enough is enough. For someone like [Mr. Chang], it’s very reasonable to at least give it a try. His life could potentially be improved.”
The quandary over dialysis for older patients is but one of many concerning the use of life-extending technologies for this group. Tangled up with efforts to improve the quality of lives are matters of money. Many critics maintain that while increasing use of these technologies — extended chemotherapy, breathing tubes — stokes America’s massive health-care spending, the quality of care has not increased. In fact, it has diminished, creating an American way of death that has grown slow, painful and expensive.
“The question is, are people and families willing to have these conversations?”
“People have concerns besides simply prolonging their lives,” writes Atul Gawande, MD, a Harvard University surgeon and Stanford University alumnus whose writings have influenced the political debate surrounding health-care reform, in the Aug. 2 issue of the New Yorker. “Avoiding suffering, being with family, being mentally aware, not becoming a burden. Technological care has not met those needs.”
According to Gawande, 25 percent of Medicare spending is for the 5 percent of patients who are in their final year of life, and most of that money goes for care in their last couple of months, which is of little apparent benefit.
While the cost of kidney dialysis is a fraction of this — Medicare spends more than $20 billion per year on dialysis treatment and medications — the rapid growth in spending represents “in microcosm the escalating costs of the overall health-care system,” write Aronson and Knauf.
“Providing real data on how patients actually do on dialysis is making a difference,” says Aronson in a follow-up interview. “Studies elucidating outcomes that are not very good even if you do start dialysis are encouraging more conversations between doctors and their patients, and encouraging nephrologists to get better training in geriatric care.”
Aronson points to a 2009 study in the Clinical Journal of the American Society of Nephrology that found dialysis for elderly kidney failure patients with multiple severe ailments extended life by two years, while similar patients who did not get dialysis but instead received palliative or pain-reducing care survived about a year but with significantly fewer days in the hospital or time spent receiving medical care.
It’s important for patients to realize the benefits and drawbacks of choosing dialysis so they can make a decision that best reflects their personal values.
“Most physicians were trained to extend life unless explicitly requested not to,” says Arnold Milstein, MD, professor of medicine at Stanford and director of the Clinical Excellence Research Center. “As a result, we are rarely skillful in the psychologically nuanced job of helping patients to select the end-of-life treatment option best aligned with their personal values.”
The solution is more discussions between doctors and patients about these choices. “If discussions take place on what patients want,” says Moss, “there is less pain and suffering and less expense. The question is, ‘Are people and families willing to have these conversations?’”
In mid-July, Chertow moves up his appointment with Chang by two weeks. His recent blood test results are worrisome. Chertow has been discussing dialysis with Chang during several appointments over months now. Dialysis will not be easy for Chang. Chertow has made that clear. But now he wants to make it very clear that it’s time to make a decision.
“Your lab tests are terrible,” Chertow says. “I’m fearful that your kidneys are failing. As your kidney function got worse, the potassium went up. Some of your body chemistries are very much out of balance because your kidneys are not working.
“Now, Mr. Chang,” he says, placing his hand over Chang’s. He moves his chair close, their knees almost touching. “This dramatic change has made me very concerned that you will get very sick very soon.”
Chang and his wife both nod nervously.
“Maybe you’re ready to pass on. If you want a chance to stay alive and healthy for the next several years, you need to start dialysis. If you want to stay off dialysis, that’s your decision. … If your lab tests are worse next week, I need to bring you into the hospital. … I just can’t manufacture time. I’m very worried about you. If dialysis is able to keep you alive and well, embrace dialysis, do not fear it.”
Three days later, Chertow calls Chang at home on a Sunday. His lab tests are worse. He recommends Chang come into the hospital right away. He tells him it’s time to make a decision. Without dialysis his kidneys can’t keep him alive. And that’s when Chang makes up his mind. He goes to the hospital.
It’s several days before Chang is released home. After starting dialysis he does feel better and stronger.
“We can’t just assume we should start dialysis because it’s technically feasible,” Chertow says. “That doesn’t mean we should do it. It’s not right for all patients.”
But for Chang, he’s relieved to say, it seems to be the right decision. He’s doing extremely well.
“For a 79-year-old gentleman with other problems, he feels really good,” Chertow says.
E-mail Tracie White