What to Expect If You Refuse Dialysis

Patients with advanced kidney disease that approaches stage 5 have two choices when it comes to managing their disease, either getting started on some kind of dialysis (in center hemodialysis being most common in the US, or home dialysis which could be either hemodialysis or peritoneal dialysis) or getting a kidney transplant. But what if a patient cannot have or does not want any of these options for any reason? What happens when a patient with kidney failure does not receive dialysis or a transplant? How long can they expect to live? This article will attempt to answer a few of these questions.

Deciding who is that "right patient" is a decision that is best left to the discussion between the patient and their nephrologist. Traditionally, when patients were not deemed to be candidates for dialysis, nephrologists would say, "we are going to withhold dialysis on Ms. X". However, saying "withhold" has negative connotations (think "we are going to withhold life support, etc etc"). To a typical patient and their family, it gives the impression that the doctor is not going to be offering anything and we basically wait till the patient dies. However, this couldn't be further from the truth since a lot of complications of kidney disease can and should be managed with medicines. In other words, nephrologists could still offer a lot; pretty much everything short of hooking up the patient to the dialysis machine. And hence, to better communicate what is still do-able for the patient, the appropriate term for non-dialytic management of kidney failure that is now used is maximal conservative management (MCM).

Not every patient would necessarily make a good candidate for MCM, and other options might be more appropriate. Conservative management is a good fit in various settings. These could include advanced age and frailty, severe dementia, presence of other severe disease conditions like heart failure or metastatic cancer, etc. In such cases, it is hard to always predict if dialysis would add anything to the quality/quantity of life. And often, patients are simply looking at the "big picture", especially if life expectancy is limited.

However, MCM is not for everyone. Patients should be educated that there are only so many complications of kidney failure that are treatable with pills, and some symptoms/signs will only respond to dialysis. This is because the so-called uremic toxins that accumulate in kidney failure and are the reason for most complications will not be removed with conservative management (although even dialysis does not necessarily remove all of them either). The patient and the physician might need to sit together to go over the expectations and chart a plan for care. And when the talk is about expectations, two questions will often pop up from patients who are refusing dialysis:

• How would you feel if you refuse dialysis?
• Would your life span be shortened if you refuse dialysis?

Given the small amount of data, these are not easy questions to answer. But we do have more data available about life expectancy in patients who do opt for dialysis. As per the United States Renal Data System report, expected survival for patients on dialysis could vary from  8 years (for patients aged 40 to 44) to 4.5 years (patients between 60 to 64 years of age). This is, however, the average, with wide fluctuations seen depending on the patient's age, nutritional status, and presence of other co-existing disease conditions like ischemic heart disease, cancer, etc. I would also like to direct your attention to a graph that compares the expectancy of a normal 55-year old male to a similar patient on dialysis or one who has received a kidney transplant.

Let's look at some studies that have tried to compare survival between these two categories. A study on patients with stage 5 kidney disease who were at least 80 years of age reported a median life span that was 20 months longer (29 months vs 9 months) in patients choosing dialysis. Another study that compared survival between patients who opted for dialysis with those who chose conservative management also reported better survival in patients who chose dialysis. All the patients were at least 75 years old. The 1-year survival rates were 84% in the group choosing dialysis and 68% in the group choosing non-dialytic management. One might deduce from this data that kidney failure patients who opt for dialysis will generally tend to live longer.

However, the above would be a simplistic assumption. Patients with advanced kidney disease will often have multiple other serious disease conditions like heart failure, diabetes, cancer, etc; what we physicians call "co-morbidities". And so, if we take another look at the data we have discussed above, we realize that life expectancy in patients who had other severe co-existing disease conditions like ischemic heart disease actually did not differ; whether they chose dialysis or not! In other words, in a patient who has severe co-morbidities, survival might be determined more by these conditions than by whether the patient is dialyzed or not. The take home message is that dialysis will increase your lifespan as long as you don't have multiple other serious illnesses mentioned above.

Finally, let me mention an important statistic. The average life span after a patient already on dialysis is taken off dialysis is 6 to 8 days, but the extreme range can fluctuate anywhere between 2 days to 100 days.

For patients who decide to not chose dialysis after a discussion with their nephrologists, an obvious question that arises is, "how would I feel"? Most patients are in fact more worried about this than about the possible reduction in life expectancy.

In 1949, Dr David Karnofsky described a scale (100 being a normal healthy person, and 0 implying death) that could be used to objectively measure the functional status of cancer patients. The scale has now been applied to measure the rate of functional decline of kidney failure patients who are managed conservatively without dialysis. What is interesting to note is that such patients would probably require only occasional assistance till about the last month of their life, after which they will see a steep decline in their functional status, thus progressively requiring special care/hospital admission. The scale and the article do give us some more insight on what to expect when kidney failure patients look into the future and decide to opt for a life without dialysis.

These conclusions are based on the assumption that the patients are well taken care of conservatively, in a non-aggressive way. This is what we now refer to as maximal conservative management.