Catherine Burgoyne hated what was happening to her. At the age of 92, she had suddenly lost her cherished independence. A fall led to kidney failure, which led to dialysis, which led to the need to tie her wrists to the hospital bed rails.
In those days, she was often confused and would try to rip out the tube in her chest, implanted to enable dialysis. But her words and grimaces left no doubt that she could not bear the restraints, or her complete dependence — a life so different from what she had known just weeks earlier.
Burgoyne had chosen her nephew and his wife, Robert and Nancy Tucker, to make health care decisions if she could not. Now, her nephew spent hours at her side, distraught over her misery, anguished by the choice before him. Her hands could be freed if dialysis stopped. But dialysis was keeping her alive.
She was among the growing number of very old and very sick people who end up on dialysis, a procedure that filters toxins and other substances from the blood.
But as more elderly people suffer kidney failure, new data reveal a troubling pattern for dialysis patients: A high percentage die anyway, and even those who live longer often don’t live well. That has led some patients and doctors to consider what once might have been unthinkable: disconnecting the dialysis machine.
“We used to think, ‘Dialysis, it’s great. You get more life. You get more days. Let’s do it,’ ” said Jody Comart, director of palliative care for Hebrew SeniorLife, a Greater Boston nonprofit that provides an array of services to aging patients. “But now we understand, ‘Well, you get more days. But three days [a week] are taken up by dialysis and exhaustion and feeling crummy and you are likely to have several hospitalizations each year due to complications.’ ”
Dr. Ernest Mandel, medical director of nephrology and dialysis at Hebrew SeniorLife, said that too often dialysis is the default response to kidney failure, occurring without discussion. Patients have no idea what they’re getting into — or that they could choose another route.
Most cases of kidney failure in this country are caused by diabetes and hypertension, conditions that erode kidney function gradually over many years. Burgoyne’s illness was more sudden.
Alone in her apartment in a Foxborough senior housing project, she fell one night about a year ago. By the time a neighbor found her, she had been lying on the floor for a day or two. During those long hours without food or water, her muscles broke down and released toxins that damaged her kidneys.
She was admitted to a hospital intensive care unit, bruised and disoriented. As so often happens, Burgoyne started dialysis in a crisis — doctors call it “crashing into dialysis.” There was hope it would be temporary, that her kidneys might revive.
After a couple of weeks in the hospital, Burgoyne was admitted to the medical acute care unit at Hebrew SeniorLife, which takes care of people too sick for a nursing home but not needing a full-service hospital. Although she’d been living independently, she had a heart pacemaker, chronic obstructive lung disease, and high blood pressure, among other ailments, said Anne Carr, a nurse practitioner who cared for her at HebrewLife.
As the weeks went by, the hope for improvement waned. “We didn’t know if there was a recovery in her future,” Carr said.
Burgoyne’s wrists were tied to the bed rails all the time, because she was in danger of ripping out the permanent catheter needed for her three-times-a-week dialysis.
Tucker talked to his aunt about ending dialysis. “Do you understand what it means if we stop this? This is what is keeping you alive.” She responded with a kind of shrug, which he took to mean, “It is what it is, nothing I can do.”
In 2014, some 420,000 Americans were on dialysis at any given time, and that number has almost surely increased. Those older than 75 are the fastest-growing group of dialysis patients. Medicare spends about $88,000 annually per patient for dialysis and related services.
Dialysis has long been considered a necessary response to kidney failure, a life-saving and life-prolonging procedure. The patient’s blood is passed through a machine that removes electrolytes, toxins, and excess fluid. Younger people who are otherwise healthy can have full lives and even hold jobs while on dialysis.
Although the dialysis machine filters the blood, it doesn’t do as good a job as real kidneys. It often doesn’t even relieve the symptoms of kidney failure, which can include nausea, shortness of breath, muscle cramps, itching, tiredness, and lack of appetite. In many, dialysis induces a bone-deep fatigue. Patients also have to travel to a clinic three times a week, and spend three or four hours hooked to the machine.
To make matters worse, older people and people with multiple illnesses are prone to infections, clots, and other problems that can lead to repeat hospitalizations. Often, their health declines, and they lose the ability to manage daily activities such as bathing.
No wonder surveys have found that a majority of patients on dialysis regret starting it.
Dr. James A. Tulsky, chief of the division of palliative medicine at Brigham and Women’s Hospital, said he worries many dialysis patients would choose otherwise, if they were better informed at the outset.
“The typical answer is, ‘What else can I do?’ The answer is, there might be other options . . . and if you don’t like it, you may have the option to stop it,” he said.
A 2012 study of patients with end-stage kidney disease found that those who underwent dialysis lived 404 days longer than those who decided against the procedure. But 326 of those extra days were spent undergoing dialysis, and an uncounted number were lost to hospitalization.
Notably, for those older than 75, dialysis does not always result in any additional days of life. Studies in the Netherlands and the United Kingdom have shown that elderly patients who forgo dialysis often live about as long as those who choose the procedure.
American kidney doctors — known as nephrologists — need to change their approach, said Mandel, the Hebrew SeniorLife nephrologist. “We tended to wash our hands of the patient if they didn’t want dialysis,” he said.
Instead, he said, the decision should not be a matter of accepting or rejecting dialysis but choosing among transplantation, dialysis, or what is known as “conservative management” — a method of treating kidney disease focused on relieving symptoms and adjusting medications and lifestyle to preserve kidney function.
And then, he added, patients need to have continuing conversations about whether to change course. Stopping dialysis can be a weighty decision. Patients whose kidneys have become dependent on dialysis die quickly when it is withdrawn, within seven or eight days on average.
Although dialysis is expensive, the question of whether conservative management saves money has not been adequately studied. In any case, Mandel said, the main point is to improve patients’ quality of life.
Mandel thinks the decision to put Burgoyne on dialysis after her fall was reasonable, given the severity of her kidney failure and the hope for recovery. But, he said, she might have benefited from a conversation about what dialysis would entail and when to consider stopping it.
Once she was admitted to Hebrew SeniorLife, Burgoyne and her nephew had a chance for many conversations about her options. They were offered a service that few kidney patients get — palliative care, a team-based approach to managing serious illness that focuses on quality of life.
Palliative care is similar to hospice in that it works to treat symptoms and keep patients comfortable, but patients are not necessarily dying and can pursue curative treatments.
Traditionally, palliative care has been employed to help cancer patients in the hospital. But its practitioners are recognizing that other types of patients can benefit, too — especially those with kidney failure. The palliative care team can help patients assess whether to start or stop dialysis, and can manage the symptoms in whatever path the patient chooses.
In Burgoyne’s case, the team — doctor, nurse practitioner, social worker, and chaplain — weighed Burgoyne’s prognosis and talked with Tucker about what he thought was best for her. Did it make sense to keep doing dialysis?
“Many patients who have started dialysis, they do wonder about their prognosis. They want to talk about end of life,” said Dr. Jane Schell, professor at the University of Pittsburgh School of Medicine and one of very few doctors who specialize in both palliative care and nephrology. “We’re not asking them. We’re not inviting that conversation.”
Nephrologists and palliative care specialists are both starting to step up. Schell has noticed that many nephrologists-in-training are now making a point of acquiring palliative care skills, and medical educators are recognizing its importance.
And in Boston, the Brigham plans to start an outpatient palliative care program specifically for kidney patients. It will be one of only a handful in the country, said Tulsky, the palliative care chief.
Companies that run dialysis clinics are also getting involved.Dialysis Clinic Inc., a national nonprofit provider, has undertaken six demonstration projects that enlist help from palliative care and hospice practitioners. These programs emphasize educating patients early about their illness and their options, before a crisis. The options can include transplantation or learning to dialyze at home.
The 92-year-old Burgoyne, frail and confused, was not a candidate for either options.
Burgoyne had been the “live wire” aunt in a big family. Divorced and childless, she baby-sat her eight nieces and nephews, and then years later took care of their children. As Tucker weighed the decision, he kept in touch with his siblings and cousins.
Tucker spoke often with the care team, particularly with her attending physician, Dr. Natalya Vorontsova. “She’d say, ‘There’s no easy to this. There’s only hard,’ ” he recalled.
Finally, he made the hard decision. Tucker told his aunt she would have one more dialysis session and the restraints could come off. She was delighted.
Tucker made arrangements to move Burgoyne into a hospice service at a nursing home in Westwood. Few kidney patients get to take full advantage of hospice, because in most cases Medicare does not cover hospice when the patient is on dialysis. And when the patient stops dialysis, death typically comes in about a week.
It’s a gentle death. The patient becomes groggy, falls asleep, and doesn’t wake up.
Tucker told his relatives that now was the time to say goodbye. She had just a few days.
But Burgoyne was in no rush. She loved the new facility, Clark House at Fox Hill Village, and lingered happily for a month. In early July, three months after her fall, the hospice called to say that the end was near. Tucker, his wife, and his sister came to her side. They held her hand for her final hours.
“It was very sad,” Tucker said.
But it was peaceful, for Burgoyne — and for Tucker, too, who knew he’d made the right decision. Reflecting on it nearly a year later, he said, “At the end, I felt OK.”Felice J. Freyer can be reached at firstname.lastname@example.org.