Stage 5 CKD Without Dialysis: What to Expect & Prepare For

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Let’s talk honestly for a moment. If you’re reading this, chances are you or someone you love is facing some incredibly difficult decisions. Maybe you’re trying to understand what the final stages of kidney disease look like without dialysis. Maybe you’re just scared, confused, and trying to prepare yourself emotionally.

You’re not alone in this.

In my experience working with patients and families navigating chronic kidney disease (CKD), especially Stage 5, I’ve seen how much fear and mystery surround the “what comes next” part. Especially when someone chooses not to start dialysis—or can’t, for medical or personal reasons.

So, let’s gently and respectfully walk through what happens in Stage 5 CKD without dialysis, what the symptoms may look like, and how you can find peace, support, and understanding along the way.

What Is Stage 5 CKD, Really?

Stage 5 CKD, also known as end-stage renal disease (ESRD), is when the kidneys are functioning at less than 15% of their normal ability. That’s not a lot. At this point, the kidneys simply can’t filter waste or manage fluids and electrolytes the way they should.

Dialysis can take over that role. But when someone decides not to do dialysis—whether due to age, frailty, other illnesses, or just personal choice—the body begins a gradual decline.

It’s not an easy thing to witness, but understanding the signs can help families prepare and provide comfort during this time.

Common Symptoms Before Death Without Dialysis

Everyone’s journey is different, but there are some common signs people tend to experience in the final weeks or days of Stage 5 CKD without dialysis:

1. Severe Fatigue and Sleepiness

One of the earliest—and most profound—symptoms is extreme tiredness. We’re not talking about regular exhaustion; it’s the kind of fatigue that makes even sitting up feel like a marathon.

👉 I remember a patient’s daughter saying, “It’s like my mom is drifting in and out of a dream she can’t wake up from.” That’s a powerful way to describe it.

2. Loss of Appetite and Weight Loss

As the kidneys stop filtering waste, toxins build up in the blood. This leads to nausea, a metallic taste in the mouth, and an aversion to food. It’s not that the person won’t eat—it’s that their body simply doesn’t want to anymore.

This can be hard on loved ones who want to nourish and care for them. But it’s a natural part of the body slowing down.

3. Itching and Restlessness

This one surprises many people: uremic itching. When waste builds up in the blood, it can cause persistent, intense itching, especially at night.

Meanwhile, some patients feel restless or have trouble finding a comfortable position. This is often due to muscle cramps or nerve discomfort.

4. Changes in Mental Clarity

Confusion, forgetfulness, or even hallucinations may occur as toxins accumulate in the brain. Some describe it as a fog. Others seem like they’re reliving old memories or talking to people who aren’t there.

This can be distressing—but also, sometimes, oddly beautiful. One family shared that their father started talking about his childhood dog with such vivid joy, it brought everyone to tears.

5. Swelling and Fluid Buildup

The kidneys usually balance fluids, but in Stage 5 without treatment, fluid accumulates in the legs, hands, lungs, and around the heart. This can cause swollen ankles, shortness of breath, and sometimes chest discomfort.

Comfort care, like elevating the legs or adjusting pillows, can go a long way here.

6. Changes in Urination

Urine output may dramatically decrease—or stop altogether—as the kidneys shut down. For some, urine becomes darker or has a strong smell.

Again, this isn’t painful in itself, but it’s a sign the end is approaching.

7. Peaceful Withdrawal

In the final days, many patients begin sleeping more and speaking less. They may drift in and out of awareness and become less responsive. It often looks like they’re pulling inward—both emotionally and physically.

For loved ones, this is often the most emotional phase, but also, sometimes, the most peaceful. It’s not uncommon for family to say: “It felt like they were saying goodbye in their own way.”

Choosing Comfort Over Treatment

Let’s take a moment to honor something important: not choosing dialysis is a valid, thoughtful, and deeply personal decision. In fact, palliative care and hospice teams are incredibly skilled at supporting patients in this exact situation—prioritizing comfort, dignity, and peace.

I’ve worked with families who said, after it was all over, “We know they were at peace. That was what they wanted.”

If you’re facing this path, or supporting someone who is, please know that you’re not doing anything wrong. You’re allowing someone to live and pass on their terms.

When to Call for Help

Even without dialysis, support is available. Hospice and palliative care professionals can manage pain, help with fluids, ease breathing, and provide emotional support for everyone involved.

If you notice your loved one:

Is in visible pain
Has difficulty breathing
Becomes confused or frightened
Is no longer eating or drinking

…it’s time to reach out for extra care.

You don’t have to do this alone.

Final Thoughts: Finding Peace in the Process

Talking about end-of-life symptoms isn’t easy. But pretending they don’t exist doesn’t help anyone either.

Instead, let’s hold space for the reality—and the humanity—of this process.

💬 What does your loved one want?

💬 What matters most to them in these final weeks or days?

💬 What can you do to make them feel safe, respected, and loved?

The end of life with Stage 5 CKD without dialysis can be full of quiet moments, meaningful conversations, and soft goodbyes. It’s hard—but it can also be deeply meaningful.

You’re doing your best. That matters more than you know.

📚 Trusted Sources:

👩‍⚕️ About the Author:

Sophia M. is a kidney health writer, patient advocate, and founder of MedLifeGuide.com. Her work combines clinical knowledge with a compassionate voice, helping patients and families navigate the hardest chapters of their health journeys.

⚠️ Disclaimer:

This content is for informational purposes only and is not a substitute for medical advice. Please consult a healthcare provider for personalized guidance.

Stage 5 CKD Symptoms Before Death Without Dialysis