What Happens If Someone Refuses Dialysis?

Refusing dialysis when your kidneys have failed is a decision that shortens life but does not end it immediately. Depending on age, remaining kidney function, and other health conditions, people who forgo dialysis typically live for months and sometimes more than a year, though the range varies widely. The trajectory involves a gradual buildup of toxins and fluid that the kidneys can no longer clear, producing a recognizable set of symptoms that palliative care can partially manage. What makes this decision more complicated than it might first appear is that dialysis itself is not always clearly beneficial, particularly for older adults with multiple health problems, and refusing it does not mean refusing all medical treatment.

How Long People Typically Live

Survival after choosing not to start dialysis depends heavily on how much kidney function remains at the time of the decision, the person’s age, and what other illnesses they carry. A systematic review in JAMA Network Open found that median survival across studies ranged from 1 to 41 months, with wide variation based on geography, age, and how aggressively other medical care was managed.¹ An earlier review focused on conservative (non-dialysis) management reported a narrower range, with median survival of at least six months and up to about 23 months.²

A more recent study stratified patients by how suitable they were for dialysis in the first place. Among older adults who chose conservative management but were considered good candidates for dialysis, median survival was about 32 months. For those judged less suitable for dialysis, it was about 18 months. By comparison, those who went ahead with dialysis had a median survival of roughly 53 months.³ Those numbers make the survival gap look clear-cut, but as the next section explains, the picture changes meaningfully once you account for who is making this choice and what their health looks like.

When Dialysis May Not Actually Help

The survival advantage of dialysis shrinks, and in some cases disappears, for older people with serious additional health problems. One review noted that any survival benefit from dialysis decreases with comorbidities, and that the evidence is genuinely mixed about whether dialysis prolongs survival in elderly patients compared with conservative care.² Observational data suggests dialysis does not provide a survival benefit for older adults with poor mobility and high levels of comorbidity.⁴

A Dutch study comparing dialysis with conservative management in elderly patients found that for those over 80, there was no detectable survival benefit from starting dialysis. Meanwhile, half of the dialysis patients were hospitalized within six months, compared with about a quarter of those managed conservatively.⁵ For an 85-year-old with heart disease and limited mobility, spending a significant portion of remaining life traveling to and from a dialysis center three times a week, dealing with the fatigue and complications that follow each session, and still facing frequent hospitalizations may not represent a clear gain.

This is part of why the framing of “refusing” dialysis can be misleading. For a subset of patients, particularly frail older adults, choosing not to dialyze is less a refusal of life-saving treatment and more a decision between two paths with comparable survival but very different day-to-day experiences.

What the Body Goes Through

When the kidneys stop filtering effectively and dialysis is not used to compensate, waste products and excess fluid accumulate in the blood. This condition, broadly called uremia, produces a constellation of symptoms that intensifies as kidney function declines further. A detailed study of symptoms in the final month of life for patients managed without dialysis found that the burden was substantial. The median number of symptoms reported was around 17, rising higher when kidney-specific symptoms were included.⁶

The most commonly reported symptoms were:

Fatigue: reported by about 86% of patients, and often the most persistent complaint throughout the illness.
Itching: affecting roughly 84%, caused by toxin buildup in the skin and often difficult to relieve completely.
Drowsiness and poor concentration: reported by over 75%, reflecting the effect of uremic toxins on the brain.
Breathlessness: present in about 80% and rated as disproportionately distressing compared with other symptoms of similar prevalence.
Pain: reported by roughly 73%, often related to bone and joint problems or nerve damage from kidney disease.
Swelling in the arms and legs: affecting about 71%, as the body retains fluid it can no longer excrete efficiently.
Appetite loss, dry mouth, constipation, and nausea: each reported by more than half of patients.

The symptom burden in these patients was higher than that typically seen in advanced cancer patients in the month before death.⁶ That finding surprises many people, because kidney failure is not commonly thought of in the same category as cancer when it comes to end-of-life suffering. Psychological distress was moderate on average but varied enormously from person to person, with some patients reporting very little and others experiencing severe anxiety and depression.⁷

As the weeks progress, drowsiness deepens. Many patients spend increasing amounts of time sleeping, and the transition from uremic drowsiness to a coma-like state and eventually death is often gradual enough that it can feel peaceful to observers, though the preceding weeks are marked by the symptoms listed above. Breathlessness, in particular, tends to cause the most distress and often requires active palliation.

Conservative Kidney Management

Refusing dialysis does not mean refusing all treatment. Conservative kidney management is a structured medical approach that aims to slow the loss of remaining kidney function, control symptoms, and maintain quality of life without dialysis. It typically includes medications to manage blood pressure, fluid retention, anemia, and bone health, alongside careful dietary changes, particularly protein restriction.⁸

Dietary management plays a surprisingly large role. A very low protein diet supplemented with amino acid analogs has been studied as a way to reduce the buildup of uremic toxins. One center reported that this approach delayed the need for dialysis by an average of a year, with about a quarter of patients continuing on the diet for two years and some lasting as long as seven years. Survival on this regimen was comparable to that of patients who started dialysis, and no negative effect on nutritional status was observed.⁹ These results come from a single center, so they should be interpreted cautiously, but they illustrate that conservative management is not the same as doing nothing.

The distinction matters for patients and families. When someone says they are “refusing dialysis,” healthcare teams increasingly try to reframe the conversation around what care the person does want, rather than what they are declining. Conservative kidney management programs typically involve regular check-ins with a nephrologist, symptom-focused prescribing, and advance care planning for the trajectory ahead.

Quality of Life Compared

One of the central reasons people choose conservative management is that dialysis exacts its own toll on daily life. Hemodialysis usually means three sessions per week, each lasting several hours, plus travel time and recovery time afterward. Peritoneal dialysis can be done at home but requires daily exchanges and carries infection risks. Both forms involve dietary restrictions, fatigue, and frequent medical appointments.

In the Dutch study of elderly patients, quality of life at baseline did not differ between those who chose dialysis and those who chose conservative management. After six months, the dialysis group showed no meaningful improvement, while the conservative group experienced a small decline.⁵ For patients managed conservatively, the factors most associated with poor quality of life were difficulty with usual activities, drowsiness, and shortness of breath. For dialysis patients, the biggest quality-of-life drivers were reduced ability to care for themselves and lack of energy.¹⁰

A broader review found that conservative management provided comparable or superior health-related quality of life and was associated with fewer hospitalizations. Patients managed conservatively were also more likely to die at home, which tends to align better with stated end-of-life preferences.¹¹ Dying at home rather than in a hospital may sound like a minor distinction, but for many people approaching the end of life, it is one of the things they care about most.

Palliative Care and End-of-Life Support

Palliative care is not the same as hospice, though the two overlap. Palliative care focuses on symptom relief and can begin alongside conservative management well before death is imminent. Hospice care, by contrast, is typically reserved for the final months when the focus shifts entirely to comfort. Both are underused in kidney disease. One Irish study found that specialist palliative care was involved in the care of only about a third of end-stage kidney disease patients before death, and most referrals came very late.¹²

This is a problem because, as the symptom data shows, the final weeks of kidney failure without dialysis involve a high and complex symptom burden. Without proactive palliative input, symptoms like breathlessness, pain, and itching may go undertreated. There is broad agreement that palliative care services can improve end-of-life care for patients who choose not to have dialysis.¹³ If you or someone you care about is considering this path, asking for a palliative care referral early, rather than waiting until the final days, is one of the most consequential practical steps available.

Palliative teams can manage fluid overload with careful diuretic dosing, address nausea with antiemetics, treat pain with appropriate analgesics (with dose adjustments for reduced kidney clearance), and help with the psychological distress that frequently accompanies the final stage of kidney disease. They can also help families understand what to expect, which often reduces the shock and distress surrounding the dying process.

The Right to Refuse

In most legal systems, a competent adult has the right to refuse any medical treatment, including dialysis. This applies whether the person has never started dialysis or decides to stop it after being on it for years. Ethically, the decision rests on the principle of patient autonomy, which holds that individuals have the right to make informed choices about their own bodies even when those choices lead to earlier death.¹⁴

The ethical framework around this decision involves balancing four principles: doing good, avoiding harm, respecting the patient’s choices, and treating patients fairly.¹⁵ In practice, the tension usually arises when clinicians feel that dialysis could extend life meaningfully but the patient does not want it. The medical team may worry about abandoning the patient, while the patient may feel that the burden of treatment outweighs the time it buys. Good shared decision-making tries to bridge this gap, though the reality of these conversations can be messy. One study of an advance care planning intervention found that while patients valued the coaching process, it had limited impact on their actual treatment decisions, suggesting that readiness to talk about end-of-life planning and readiness to make specific treatment choices are not the same thing.¹⁶

Stopping dialysis after already being on it is one of the more common ways people with kidney failure die. In many dialysis populations, withdrawal from treatment accounts for a substantial fraction of deaths. The timeline after stopping is typically shorter than for someone who never started, because the body has become accustomed to having waste cleared artificially and adjusts poorly when that stops. Death after dialysis withdrawal generally occurs within one to two weeks, though this varies.

When Cognitive Decline Complicates the Decision

Kidney failure does not just affect the body. Uremic encephalopathy, a well-known complication of advanced kidney disease, impairs thinking and judgment. More recent evidence suggests that cognitive impairment begins at earlier stages of kidney disease than previously recognized, and in subtler ways.¹⁷ This creates a difficult clinical and ethical situation: the person being asked to make a life-altering decision about dialysis may have reduced capacity to make that decision.

When a patient’s capacity is in question, the process becomes more complex. Clinicians may involve psychiatry or ethics consultations, look for previously expressed wishes in advance directives, or turn to legally designated decision-makers. The practical takeaway is that advance care planning, documenting your treatment preferences in writing while you are still clearly able to express them, is especially important for people with progressing kidney disease. Waiting until the decision point arrives risks making it at a time when your ability to weigh the options is compromised.

Impact on Families and Caregivers

The decision to refuse dialysis does not happen in isolation. Families often play a significant role in the process, and caregivers of people managed conservatively carry a meaningful burden. A systematic review found that caregivers of patients receiving conservative kidney management experienced significant caregiver burden, and their quality of life was affected in ways comparable to those caring for dialysis patients.¹⁸ In other words, choosing conservative management does not necessarily ease the load on the people providing care.

One nuance worth noting is that while overall quality of life was similar between caregivers in both groups, care-related quality of life was actually worse among caregivers of dialysis patients.¹⁹ The demands of helping with dialysis logistics, managing post-session fatigue, and navigating frequent hospital visits take a specific toll that differs from the caregiving involved in conservative management, which tends to be more continuous but less crisis-driven. Caregivers also play an influential role in the treatment decision itself, which can generate guilt, second-guessing, and grief regardless of which path is chosen.

When Cost Forces the Decision

Not every refusal of dialysis is truly voluntary. Dialysis is expensive, and access is profoundly unequal around the world. A global survey of nephrologists across 90 countries found that while governments in most countries reimburse dialysis to some degree, reimbursement in low- and middle-income countries is often insufficient, placing a heavy burden on public health expenditure. In countries without universal coverage, the cost of treatment is an important cause of financial hardship.²⁰

Even in countries with strong coverage, indirect costs matter. Time away from work, transportation to dialysis centers, and the loss of income when a family member becomes a full-time caregiver all contribute to financial strain. For some people, declining dialysis is less a medical decision and more an economic one, a distinction that rarely appears in the clinical literature but shapes real outcomes. In parts of the world where dialysis simply is not available or affordable, conservative management is not an alternative chosen from a menu of options; it is the default reality.

1
JAMA Network Open. Long-term Outcomes Among Patients With Advanced Kidney Disease Who Forgo Maintenance Dialysis: A Systematic Review
2
PubMed Central. Conservative Management of End-Stage Renal Disease without Dialysis: A Systematic Review
3
PubMed Central. Survival of Older Adults Choosing Dialysis or Conservative Kidney Management, Stratified by Suitability for Dialysis
4
BMC Nephrology. Treatment decisions for older adults with advanced chronic kidney disease
5
PubMed Central. Quality of life after the initiation of dialysis or maximal conservative management in elderly patients: a longitudinal analysis of the Geriatric assessment in OLder patients starting Dialysis (GOLD) study
6
Journal of Pain and Symptom Management. Symptoms in the Month Before Death for Stage 5 Chronic Kidney Disease Patients Managed Without Dialysis
7
PubMed. The Role of Kidney Supportive Care and Active Medical Management Without Dialysis in Supporting Well-Being in Kidney Care
8
PubMed. Caring for Patients With Advanced Chronic Kidney Disease: Dietary Options and Conservative Care Instead of Maintenance Dialysis
9
Nephrology Dialysis Transplantation. P0797VERY LOW PROTEIN DIET (VLPD) WITH KETOANALOGUE SUPPLEMENTS AS CONSERVATIVE MANAGEMENT OF UREMIA IN ELDERLY PATIENTS: A SINGLE-CENTER EXPERIENCE
10
Nephrology Dialysis Transplantation. #2929 FACTORS ASSOCIATED WITH QUALITY OF LIFE IN KIDNEY FAILURE MANAGED CONSERVATIVE AND WITH DIALYSIS: A RETROSPECTIVE CROSS-SECTIONAL STUDY
11
PubMed Central. Dialysis versus conservative kidney management in older adults: why one size does not fit all
12
PubMed Central. The use of palliative care services amongst end-stage kidney disease patients in an Irish tertiary referral centre
13
PubMed Central. Palliative and end-of-life care in advanced renal failure
14
PubMed Central. Ethical Issues Around the Withdrawal of Dialysis Treatment in Japan
15
PubMed. Ethical and legal aspects of end of life in dialysis patients: an Italian point of view
16
PubMed. Advanced Care Planning in Chronic Kidney Disease: Qualitative Impact of the MY WAY Intervention
17
Journal of Pain and Symptom Management. Dialysis Decision Making Dilemma: A Case of Diminished Capacity in ESKD
18
PubMed Central. Experiences of Caregivers of Patients With Conservatively Managed Kidney Failure: A Mixed Methods Systematic Review
19
Clinical Kidney Journal. Deciding between conservative kidney management and dialysis in older people with kidney failure: a narrative review
20
PubMed Central. Financial Toxicity and Kidney Disease in Children and Adults: A Scoping Review