Can I Decide When It's Time to Stop Dialysis?

Deciding when it is time to stop dialysis is a personal choice. For people with end-stage kidney failure, renal dialysis is essential to survival because the kidneys no longer work properly. Their dialysis treatments are keeping them alive, so the decision to stop treatment (or decline starting it in the first place) can be a difficult one.

Ending dialysis is an option, though. While discontinuation of dialysis ends in death, it can follow a lengthy illness in which people now experience severe symptoms, complications, and a poor quality of life. It may be a decision you discuss with a nephrologist (healthcare provider specializing in kidney care).

This article presents information about why people need the benefits of dialysis, and why they may later need to make decisions about dialysis discontinuation.

Benefits of Kidney Dialysis

Dialysis is a medical procedure used to filter the blood when a person's kidneys no longer function well enough to keep them healthy. Hemodialysis (a traditional method relying on machines at dialysis centers) or peritoneal dialysis done at home will ensure that:

• Waste products are removed before building to toxic levels in the blood.
• Electrolytes, like sodium and potassium, stay in healthy balance.
• Bones are protected and the body can make red blood cells properly (hematopoiesis).
• High blood pressure is controlled.

Kidney failure can be acute (sudden) or chronic (long-standing). The final stage of chronic kidney disease is called end-stage renal disease (ESRD). People who find themselves faced with the choice to continue or stop dialysis almost always have ESRD.

It is important to recognize that dialysis also has limitations. People still experience symptoms, including fatigue. Complications include the potentially life-threatening dialysis disequilibrium syndrome. Ultimately, with disease progression, age, and other quality-of-life factors, it may not be beneficial to prolong life with dialysis.

Signs It Might Be Time to Stop Dialysis

It can be a complicated decision to end dialysis. Nephrologists describe people they thought would not do well on dialysis who, months later, were full of life; others, though, have treated people who felt that prolonging life merely postponed death.

It's generally agreed that people might consider stopping dialysis if:

• They also have an acute illness that will cause a great deal of disability (for example, a stroke).
• They have a progressive and untreatable disease (diabetes, or cancer, for example).
• They have a dementia diagnosis or some other severe neurological disorder.

Discontinuing dialysis should never be considered in people who can continue to lead a long and enjoyable life. That said, dialysis treatment is more available to medically fragile and older people than it has been in the past.

What to Expect When Dialysis Ends

People with end-stage kidney failure who are on dialysis often experience severe health impacts that lead to hospitalization in an intensive care unit, with interventions like intubation and respiratory ventilation. They're also more likely to be living in care facilities like nursing homes.

Palliative nephrology is a field of kidney care focused on managing end-of-life care in people who decide to discontinue dialysis. It focuses on their physical symptoms but also on emotional well-being and advanced planning as people and their families face death.

Some considerations in making the decision include:

• Talking to your healthcare provider about the risks and benefits of continuing dialysis and the risks and benefits of stopping it, as well as quality of life concerns
• Checking advance directives for clues about how a loved one would want to spend their final days if you are making the decision for someone else
• Connecting with family and close loved ones about your decision. It's much easier to make a decision if you have the support of others.
• Understanding how death may be preferable to continuing dialysis while diagnosed with cancer, lung disease, stroke, or another co-occurring disease

Pain

Palliative care for people who have stopped dialysis includes managing symptoms of pain. You also can receive other medications, such as diuretics to treat the fluid buildup that will occur in people no longer taking dialysis treatments. The fluid can make you feel tired and make it harder to breathe.

Emotional pain also is a consideration. Social workers and other professionals may be a part of a healthcare team helping you with your dialysis decision.

Diet

If you decide to stop dialysis, there is no real reason to continue a restricted diet for fluids and salt intake. But changing a diet to include them can make it harder to breathe due to the fluid buildup.

You also may have other health considerations, like high blood pressure or diabetes, that contribute to decisions you make about your diet. Be sure to discuss them with your healthcare provider.

Ongoing Care

Keep in mind that people who opt out of dialysis (or never begin it) often are treated instead with what are called conservative management practices (including palliative care) rather than no care at all. Nutrition may be a part of this approach, as are social services and psychotherapy.

Survival After Dialysis

How long you live after deciding to stop dialysis will depend on the individual and the severity of your kidney disease. Some people may live only a day; others may live a few weeks without treatment.

One study of 933 people found nearly half would prefer comfort-focused care rather than care that makes them live longer when treating their kidney disease overall. In a September 2023 follow-up with the group, researchers found 377 (about 40%) had died. The majority of this group (57%) had said they preferred comfort, but the preferences showed little impact on care actually received.

Summary

Some people make the decision to stop receiving dialysis treatments for their kidney failure. Quite a few factors can affect this decision, including age, other health conditions, and personal and family preferences. It's a life-changing decision to make in conversation with a healthcare provider.

Dialysis discontinuation typically leads to death within a few weeks, but that doesn't mean that no care is provided. Conservative management and palliative nephrology practices ensure that people receive medication, proper nutrition, and emotional and social support.