What happens if you refuse dialysis

Dialysis is a treatment indicated for patients with kidney failure. Kidney failure means the kidneys are no longer capable of doing the job of cleaning the waste products of the body.

Treatment options

There are two most common treatments for kidney failure: kidney transplant and dialysis. Dialysis is a treatment wherein a machine is used to filter and clean your blood of waste products. There are two types of dialysis, hemodialysis and peritoneal dialysis, each with its pros and cons. Hemodialysis is still the most commonly used because it is more cost efficient. Kidney transplant is not an option for some patients and dialysis is often indicated for these patients or patients on the transplant waiting list.

Choosing a treatment

What influences a patient’s choice of treatment? Australian researchers identified 4 themes that may impact treatment decisions, namely:

• mortality (choosing life or death, being a burden, living in limbo)
• lack of choice (medical decision, lack of information, constraints on resources)
• gaining knowledge of options (peer influence, timing of information)
• weighing alternatives (maintaining lifestyle, family influences, maintaining the status quo)

Of these, gaining knowledge options seem to be especially important in decision-making. Knowledge gained from peers is very influential, sometimes more than doctors. The timing of when the information was received also play a role. Some patients may feel too sick or distressed to have a clear mind to objectively consider the options. In many cases, the options were presented to the patient only after dialysis has been initiated, a practice that is contrary to current clinical guidelines.  In such cases, dialysis is understandably the most preferred option, coupled with reluctance to change thus maintain the status quo. Yet, kidney failure patients may change their minds along the way. Some who refused dialysis can start anytime whereas those who gave the option a try might not like it and opt to stop. In a recent review by a Canadian researcher, 61% of 584 patients studied regretted their option to start dialysis. Among the elderly, being a burden to others is an important issue in decision-making.

Refusing dialysis

Although dialysis is a life-saving procedure, it has some major impact on quality of life which leads some patients to refuse or discontinue it. It usually requires a trip to the clinic 3 times a week, each session lasting up to 6 hours. Studies show that patients exercising the right to refuse or discontinue dialysis (cognitive status permitting) and doctors respecting their decision are an accepted practice in many developed countries. In the UK, US, and Canada, “this practice is the principal cause of death among elderly patients on dialysis, especially among those over the age of 75.”

Time left

Many patients and their love ones ask: what happens if a patient refuses dialysis? This means that waste products accumulate in the body and the end result is death. The time between cessation of dialysis and death can vary – it can be days or weeks. In clinical practice, the time left would depend on the type of kidney failure (acute vs. chronic) and the general health status of the patients.

The writer-columnist Art Buchwald was 80 years old when he refused dialysis and checked himself into a hospice in February 2006. He was suffering from complications from diabetes and an earlier stroke. He was given only a few weeks to live. In June 2006, he left the hospice when his kidney reportedly started functioning again. He got to complete a book Too Soon to say Goodbye that included eulogies written by family and friends. Buchwald eventually died of kidney failure on January 17, 2007 in his son’s home. Without dialysis, he was given a few weeks to live. He lasted for almost a year, calling them the “happiest days of my life” after the stress of making the treatment decision was over.

Quality of life

A patient’s love one would want to know about the quality of life of the patient as the end nears. Many studies indicate that chronic kidney failure patients have some discomfort but they are seldom in pain unless there are other complications. Suzanne Goldenberg, who interviewed Art Buchwald, wrote that “kidney failure offers a relatively kind death: a slow fade into toxic stupor.” Death from kidney failure has been described as getting sleepier and drowsier as the organs shut down. Those who are in a hospice are given end-of-life palliative care. However, current palliative care practices are mainly focused on end-stage renal cancer patients despite the fact that mortality rate for chronic kidney disease is higher than most cancers. Chronic kidney failure patients are more likely to die at home than in a hospice and end-of-life care issues are seldom discussed with this group of patients, according to the Canadian study.