Dying of kidney failure is usually a gradual fading rather than a sudden event. As the body loses its filter, the mind tends to drift into sleep well before the end. For many families the hardest part is deciding when to stop treatment, and the dying itself is often quieter than they fear.
What Happens in the Body When the Kidneys Stop
Healthy kidneys filter waste, extra water and minerals out of the blood and send them out as urine. When they fail, all of that stays in the body. Doctors call this state uremia, meaning waste in the blood. The buildup affects the heart, bones, blood, gut, nerves and hormones together.1Lancet Diabetes Endocrinol. Clinical management of the uraemic syndrome in chronic kidney disease Some of the trapped wastes are directly toxic to blood vessels and to the kidneys themselves.2PubMed Central. The Uremic Toxicity of Indoxyl Sulfate and p-Cresyl Sulfate: A Systematic Review They can also switch on inflammation that damages the lining of blood vessels.3PubMed Central. Indoxyl sulfate (IS)-mediated immune dysfunction provokes endothelial damage in patients with end-stage renal disease (ESRD)
Because waste, fluid and minerals all pile up at once, a person can feel several unrelated things at the same time, such as itching, nausea, swelling and fatigue. Blood tests for potassium and creatinine show doctors how far the buildup has gone, but how someone feels doesn’t always match the numbers. One person may feel fairly well at a level that leaves another very unwell.
Fluid and potassium are the two most dangerous buildups. Without working kidneys, extra fluid collects in the body and can settle in the lungs.4PubMed Central. Detecting and Treating Lung Congestion with Kidney Failure Extra fluid often shows first in the ankles, legs and around the eyes, and pressing a finger into a swollen area may leave a dent for a moment. A fast weight gain over a few days with no change in eating is usually fluid rather than real weight, which is one reason care teams keep asking for weights.
Potassium that climbs too high, or falls too low, can trigger a fatal heart rhythm.5PubMed Central. Serum Potassium Levels and Risk of Sudden Cardiac Death Among Patients With Chronic Kidney Disease and Significant Coronary Artery Disease A rhythm problem can end life without much warning.
Dialysis holds these changes off. It is a machine treatment that does the kidneys’ filtering for them, and each session removes the fluid that has built up since the last one. That eases pressure on the lungs and helps breathing. When dialysis stops, the buildup starts again within days.
Sleepiness, Confusion and Coma in the Final Stage
Kidney failure can disturb brain function through trapped waste, mineral imbalance and inflammation.6Kidney International / Elsevier. Uremic encephalopathy Thinking and memory slip, and the confusion often comes and goes.7PubMed Central. Neurology and the kidney It can progress to delirium, seizures and coma.8PubMed Central. Neurology and the kidney After dialysis stops, growing sleepiness and confusion are expected.9Palliative Care Network of Wisconsin. Clinical Care Following Withdrawal of Dialysis None of this means the person has stopped caring or is giving up. It is a physical effect of the illness.
Early on, the person may be muddled one hour and clear the next. During the confused phase, some people see or hear things that aren’t there, or become restless and suspicious. That is part of delirium, and gentle reassurance usually works better than arguing about what is real. Later they sleep most of the day and are hard to wake. Muscle twitches or jerks can occur as minerals shift. In the end they stop responding, though hearing may persist.
Coma usually comes before death. Before dialysis existed, people dying of kidney failure typically became unresponsive and comatose.10PubMed. A History of Uremia Research Many people are deeply asleep and unaware in their last days, and many families describe them as peaceful. Deep sleep is usually the illness itself, not overmedication. If you are unsure whether a drug is the cause, ask the nurse.
The clear moments are worth using. Say important things early rather than waiting. Keeping the room calm and familiar eases confusion. Tell the care team about any seizure so it can be treated. And keep talking to the person even when they seem unaware.
How Long It Takes After Stopping Dialysis
People who make no urine live on average 8 to 10 days after their last dialysis.11Palliative Care Network of Wisconsin. Clinical Care Following Withdrawal of Dialysis Rarely, survival stretches to many weeks.12Palliative Care Network of Wisconsin. Clinical Care Following Withdrawal of Dialysis
Choosing never to start dialysis is a different, longer path. People who skipped dialysis lived a typical 1 to 41 months, depending on the group.13JAMA Network Open. Long-term Outcomes Among Patients With Advanced Kidney Disease Who Forgo Maintenance Dialysis: A Systematic Review That wide span cannot predict one person’s course.
The biggest reason for the spread is how much kidney function remains. Someone who still makes a fair amount of urine keeps clearing some waste and fluid, and may live weeks rather than days. A high potassium level can shorten the time suddenly, and other illnesses such as heart disease make it shorter. Ask the team for their best estimate for your person.
Ask the kidney team what changes would signal that time is shortening, such as sleeping most of the day or no longer taking fluids, so you know what to watch for. Because the first week often matters most, call distant relatives early and have important visits and conversations sooner rather than waiting for a clearer sign. Decide where death will happen: home, hospice or hospital. If possible, arrange hospice support before stopping.
Symptoms You May See Along the Way
Tiredness, breathlessness, poor sleep, pain, anxiety and low mood are the most frequent.14PubMed Central. Palliative and end-of-life care issues in chronic kidney disease About half of people with kidney failure who don’t have dialysis live with pain.15PubMed Central. Palliative and end-of-life care issues in chronic kidney disease Nausea and other gut problems are common too.16Nature Reviews Nephrology. Gastrointestinal disorders and renal failure: exploring the connection A metallic taste and loss of appetite often come with them, and people tend to eat very little. Eating less near the end is part of the dying process, not starvation that a forced meal can fix. Small sips and favorite tastes, offered without pressure, are kinder than insisting. Anti-nausea medicine is available, though the dose may need adjusting for the kidneys.
Itching is common, often with dry skin.17PubMed Central. Uremic pruritus: pathophysiology, clinical presentation, and treatments It is linked to waste and minerals the body can’t clear, plus inflammation.18PubMed Central. Uremic pruritus: pathophysiology, clinical presentation, and treatments At very high waste levels, a fine white powder can form on the skin.19PubMed. Uremic frost: a harbinger of impending renal failure The itch can be intense enough to disturb sleep and cause scratch wounds, so it deserves treatment rather than being dismissed as minor. Regular moisturizer, short cool baths and trimmed nails reduce the damage, and the care team can add medicines suited to failed kidneys. Many ordinary itch pills build up in kidney failure, so ask before giving anything over the counter.
Waste can also inflame the sac around the heart, sometimes causing chest pain.20PubMed Central. Uremic Pericarditis: A Report of 30 Cases and Review of the Literature In a third of such cases, fluid squeezed the heart dangerously.21PubMed Central. Uremic Pericarditis: A Report of 30 Cases and Review of the Literature
Breathing changes near the end. Fluid in the lungs causes shortness of breath when lying flat, and raising the head of the bed can help. In the last days breathing may become irregular, with pauses. A gurgling sound comes from saliva the person can no longer swallow, not from choking.
Some symptoms should be reported quickly: sudden chest pain or a racing heart, new seizures or jerking, and distress from breathlessness or itching that isn’t eased.
How Comfort Care Eases These Symptoms
Palliative care, or comfort care, focuses on relieving symptoms rather than prolonging life. Kidney failure changes how drugs behave, though. Many medicines and their breakdown products leave the body through the kidneys. When the kidneys stop, those products collect and can act like an overdose even at a normal dose. A standard prescription written for someone with healthy kidneys can therefore be too strong, and the team should know the kidney status before any new drug is started.
Morphine, for example, can build up and cause side effects when kidneys fail.22PubMed. A systematic review of the use of opioid medication for those with moderate to severe cancer pain and renal impairment: a European Palliative Care Research Collaborative opioid guidelines project Fentanyl, alfentanil and methadone are generally the safer choices.23PubMed. A systematic review of the use of opioid medication for those with moderate to severe cancer pain and renal impairment: a European Palliative Care Research Collaborative opioid guidelines project Doses of morphine, oxycodone or hydromorphone are often cut by a quarter to half.24Palliative Care Network of Wisconsin. Opioid Use in Renal Failure Many other comfort drugs need lower doses or longer gaps.25Progress in Palliative Care. Palliation and Chronic Renal Failure: Opioid and Other Palliative Medications – Dosage Guidelines
Watch for signs that a drug is building up: new jerking or twitching muscles, unusual drowsiness soon after a dose, or hallucinations and agitation. Tell the nurse so the dose or drug can be changed.
Breathlessness can be eased with low-dose medicines, a fan and a raised head, and these work even when the fluid cannot be removed. Itching, nausea, restlessness and anxiety each have treatments, and good care checks on all of them. Comfort care can continue for as long as needed, and it can start while dialysis is still going on.
What Usually Causes Death in the End
The heart is usually what fails. Risk of death rises steeply as kidney function falls, mostly from heart disease.26PubMed. Chronic Kidney Disease In large trials, heart causes made up 30 to 40% of deaths among people with kidney disease and infection 25 to 30%.27European Heart Journal. Causes of death in patients with chronic kidney disease: insights from the ASCEND-D and ASCEND-ND cardiovascular outcomes trials28PubMed Central. Cause of Death in Patients with Reduced Kidney Function
The same conditions that damage the kidneys, such as diabetes and high blood pressure, also damage the heart and blood vessels, so many people arrive at kidney failure with a heart already weakened. Once the kidneys fail, the heart is hit again. Fluid strains it, the potassium swings can stop it, and inflamed vessels add to the damage. The heart is often the first organ to give way.
A heart-related death is usually not dramatic. A person who is already deeply asleep may simply stop breathing as the heartbeat fades. A sudden rhythm change can end life within moments, and when it happens in sleep, it is usually painless for the person.
Infection comes next. The waste buildup weakens the body’s defenses, and people on dialysis have an access site, such as a catheter or fistula, that germs can enter. A fever or new confusion may signal infection, so it is worth reporting. Decide with the team ahead of time whether to treat infections with antibiotics or focus on comfort, so you are not choosing under pressure.
Making and Living With the Decision to Stop
Caregivers often want to relieve suffering but feel unsure about stopping dialysis.29PubMed. Thematic synthesis of qualitative studies on patient and caregiver perspectives on end-of-life care in CKD Some feel stopping is like killing their loved one.30PubMed Central. Unravelling complex choices: multi-stakeholder perceptions on dialysis withdrawal and end-of-life care in kidney disease Doctors see it as sparing the person further suffering.31PubMed Central. Unravelling complex choices: multi-stakeholder perceptions on dialysis withdrawal and end-of-life care in kidney disease32PubMed Central. Unravelling complex choices: multi-stakeholder perceptions on dialysis withdrawal and end-of-life care in kidney disease
The guilt is understandable but often misplaced. Stopping dialysis means allowing an illness to take its course, not causing it. The kidneys have already failed, and the treatment was only holding the effects back. Many people who stop have chosen it after months of exhausting sessions, and families can take comfort that the choice usually reflects the person’s own wishes.
Beliefs about end-of-life care differ across cultures and faiths.33PubMed. Ethnic and cultural challenges at the end of life: setting the scene Raise these with the care team early, and involve a chaplain or faith leader if that would help.
Some steps ease the conversation. Ask the person what matters most to them, such as being at home, avoiding hospital stays or staying alert for a special event, since these goals can guide the choice. Do it while they can still speak. A family meeting with the kidney team lets everyone hear the same facts at once, which cuts down on disagreement and confusion later. If the person can no longer speak, the family can draw on what they said earlier and any written wishes. Stopping treatment is legal and is not the same as euthanasia.
Hospice usually offers bereavement support, and talking with the doctor afterward can answer lingering questions.