I do not want dialysis: how long can I expect to live, and how would I feel?

I often see patients in my office who refuse dialysis (should it become necessary) for their advancing kidney disease. I divide these patients in to two categories. The more common category is patients who refuse it because of the “fear of dialysis”. They could have trouble understanding dialysis and what potential benefits they could derive from it. They would often make good dialysis candidates who have more to lose than gain by refusing dialysis therapies.

The other category is the patient who rightfully refuses dialysis because she or he would not make a good candidate for such treatment. There could be multiple reasons for that. It could be advanced age and frailty, 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”. So the questions that come up in this situation are:

• How would I feel if I refuse dialysis?
• Would my life span be shortened if I refuse dialysis?

With the rightful shift in focus towards improving the quality of life, and with the skyrocketing cost of healthcare, non-dialytic management for kidney failure may be the right option for the right patient. I recall going through my nephrology training listening to my colleagues declare, “we are going to withhold dialysis for Mr X because he is too sick”! I think nephrologists give patients the wrong impression when they use the term “withhold dialysis”. This creates the impression that the patient will be left to die.

However, “not doing dialysis”, is not, and should not be tantamount to “not doing anything”. Nephrologists can still focus their efforts to treat symptoms of advanced kidney disease medically and do everything possible, short-of-dialysis, to make patients feel better. Diet can be modified to reduce uremic symptoms with a focus on optimal protein intake. This is called Maximal Conservative Management  (MCM), and is a valid renal replacement treatment option for the right patient. 

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. 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, the two questions  mentioned above will often pop up from patients who are refusing 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.

Image courtesy of bejim/ FreeDigitalPhotos.net

SURVIVAL AND LIFE SPAN WITH AND WITHOUT DIALYSIS 


Lets 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. I will also direct your attention to Figure 2 from this article that reinforces what we just discussed.

FUNCTIONAL STATUS AND QUALITY OF LIFE WITHOUT DIALYSIS

For patients who decide themselves to not be candidates for 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. The article here (see Figure 1) describes what such patients would be from a functional/quality of life standpoint in the last year of their life. 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 does give us some more insight on what to expect when kidney failure patients look in to the future, and decide to opt for a life without dialysis.

TO DIALYZE OR NOT TO DIALYZE: A NOTE OF CAUTION


The above discussion is based on statistics…raw data. I could paraphrase Mitt Romney and say, “statistics are people”! However, conclusions derived from evidence/data are not cookbook solutions to your health care needs. I would not advise making a decision to dialyze or not to dialyze based on counting your co-morbidities and plugging it in to a calculator. There really is no substitute for sitting down with your nephrologist and taking part in shared decision making based on your goals and preferences.

Veeraish Chauhan, MD, FACP, FASN
Nephrologist
Bradenton, Sarasota, FL