I don't want dialysis: how long do I expect to live and how would I feel? (2023)

I don't want dialysis: how long do I expect to live and how would I feel?

November 26, 2021

I often see patients in my practice who refuse dialysis (if needed) because of their advanced kidney disease. I divide these patients into two categories. The most common category is patients who refuse them for “fear of dialysis”. They may have trouble understanding dialysis and the potential benefits they can get from it. They would often be good candidates for dialysis, having more to lose than to gain by refusing dialysis therapy.

The other category is patients who legitimately refuse dialysis because they would not be suitable candidates for such treatment. There could be several reasons for this. It can be old age and frailty, the presence of other serious diseases, such as heart failure or metastatic cancer, etc. In these cases, it is difficult to always predict whether dialysis would add anything to the quality/quantity of life. And patients often only look at the “big picture”. So, the questions that arise in this situation are:

  • How would I feel if I refused dialysis?
  • Would my life expectancy be reduced if I refused dialysis?

With the right shift in focus to improving quality of life and the skyrocketing cost of medical care,non-dialysis managementin renal failure may be the right choicefor the right patient. I remember during my nephrology training I heard my colleagues say, "Let's do thisstop dialysisfor mr. X because he is very sick.” I think nephrologists give patients the wrong impression when they use the term “stopping dialysis”. This gives the impression that the patient is left to die.

However, "doing no dialysis" is not the same as "doing nothing" and it shouldn't be. Nephrologists can continue to focus their efforts on medically treating the symptoms of advanced kidney disease, doing everything they can except dialysis to make patients feel better. Diet can be modified to reduce uremic symptoms with an emphasis on optimal protein intake. This is known as maximum conservative management (MCM) and is a valid treatment option for renal replacement.for the right patient.

Patients should be informed that there are a limited number of complications of kidney failure that can be treated with tablets and that some symptoms/signs respond only to dialysis. The patient and doctor may need to sit down to discuss expectations and create a treatment plan. And when it comes to expectations, the two questions above often come from patients who refuse dialysis.

Given the small amount of data, these questions are not easy to answer. But we have more data on patient life expectancy thanAgainopt for dialysis. According to the United States Renal Data System report, the expected survival time of patientson dialysiscould deviate from it8 years (for patients aged 40 to 44 years) to 4.5 years (patients aged 60 to 64 years). However, this is the average, with large variations observed depending on the patient's age, nutritional status and the presence of other comorbidities such as ischemic heart disease, cancer, etc. I would also like to draw your attention to aGraphiccomparing the life expectancy of a normal 55-year-old man with that of a similar patient who is on dialysis or has had a kidney transplant.

I don't want dialysis: how long do I expect to live and how would I feel? (1)
Image courtesy of bejim/ FreeDigitalPhotos.net

TO SURVIVE AND LIVE WITH AND WITHOUT DIALYSIS

Let's look at some studies that tried to compare survival between these two categories. FORlearnin patientswith stage 5 kidney diseasewho were at least 80 years old reported an average life expectancy of 20 months longer (29 months vs. 9 months) in patients who opted for dialysis. Otherlearnwho compared survival between patients who opted for dialysis versus those who opted for conservative treatment, also reported better survival in patients who opted for dialysis. All patients were at least 75 years old. The 1-year survival rates were 84% in the group that opted for dialysis and 68% in the group that opted not to undergo dialysis. From these data, it can be deduced that patients with renal failure who opt for dialysis tend to live longer.

However, the above would be a simplifying assumption. Patients with advanced kidney disease often have many other serious illnesses such as heart failure, diabetes, cancer, etc.; as we doctors call"comorbidities". So if we look again at the data that we discussed earlier, we see that life expectancy is increasing in patients with other serious comorbidities, like B. an ischemic heart disease, not much different;whether they opted for dialysis or not! In other words, in a patient with severe comorbidities, survival may be determined more by these conditions than by whether or not the patient is on dialysis. The take home message is that dialysis will increase your life expectancy, provided you don't have many of the other serious illnesses mentioned above. I will also draw your attention to Figure 2 of theThis articlethis reinforces what we just discussed.

FUNCTIONALITY AND QUALITY OF LIFE WITHOUT DIALYSIS

For patients who, after talking to their nephrologist, decide they are not suitable for dialysis, the obvious question is "How would I feel?" In fact, most patients are more concerned about this than the potential shortening of life expectancy.

1949,Dr. David Karnofskydescribed aScale(100 is a normal healthy person and 0 means death), which could be used to objectively measure the functional status of cancer patients. The scale has already been used to measure the rate of decline in function in patients with renal failure who are receiving conservative treatment without dialysis. Hearticle here(see Figure 1) describes how these patients would be in their last year of life from a functioning/quality of life point of view. Interestingly, such patients probably only needoccasional presence until about last monthof their lives, after which they will experience a sharp decline in their functional status, for which they will gradually require special care/hospitalization. The scale and the article give us more information about what to expect when patients with renal failure look to the future and decide to live without dialysis.

TO DIALYSE OR NOT TO DIALYSE: CAUTION

The above discussion is based on statistics...raw data. I could paraphrase Mitt Romney and say "Statistics are people"! However, the conclusions derived from the evidence/data are not just prescribing solutions for your health needs. I would not recommend making the decision for or against dialysis based on counting your comorbidities and entering it into a calculator. There really is no substitute for sitting down with your nephrologist and participating in a shared decision-making process based on your goals and preferences.

Veeraish Chauhan, MD, FACP, FASN
Nephrologe
Bradenton, Sarasota, Florida

Dialysishemodialysishome hemodialysisNephropathyrenal insufficiencyperitoneal dialysis

Comments

  1. I don't want dialysis: how long do I expect to live and how would I feel? (2)

    A foreignerJune 12, 2014 at 9:25 pm

    I think doctors tend to convince patients to go on dialysis regardless of other comorbidities, so the 9-year IDDM is now 56.

    responderextinguish

    Responder

    1. I don't want dialysis: how long do I expect to live and how would I feel? (3)

      DrVCJune 28, 2014 at 12:30 pm

      Unfortunately, this is often the case.

      extinguish

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