Kidney failure and palliative care: dialysis, care without dialysis, and the right to choose

When kidneys fail, a family faces a decision few people feel ready for. The National Institute of Diabetes and Digestive and Kidney Diseases lists four ways to treat kidney failure, and one of them is care without dialysis or a transplant.¹ Dialysis may lengthen life and improve its quality, though not for everyone,² and for someone who is frail or living with other serious illnesses the question gets harder: will it give them more good time, or more time in treatment? This note explains each choice, what palliative care adds, and what happens if dialysis stops.

The short answer

• Kidney failure can be treated with hemodialysis, peritoneal dialysis, a kidney transplant, or conservative management, which is care without dialysis or a transplant.¹
• Conservative management focuses on quality of life and controlling symptoms, and palliative care is part of it.²
• For people with other serious conditions, dialysis can feel like a burden that only prolongs suffering, and problems that kidney disease causes, like heart disease, won’t go away with dialysis.¹
• You can change your mind about a treatment choice.¹
• People on dialysis have the right to decide to stop, and someone who stops can get hospice care.^3,4

The four choices

• Hemodialysis uses a machine to move the blood through a filter outside the body, removing wastes.¹
• Peritoneal dialysis uses the lining of the belly to filter the blood inside the body.¹
• A kidney transplant is surgery to place a healthy kidney from a living donor or from a person who has just died.¹
• Conservative management treats kidney failure without dialysis or a transplant.¹

Medicare covers kidney failure no matter what the person’s age.¹

Care without dialysis

With conservative management, the health care team keeps caring for the person without dialysis or a transplant. The focus is quality of life and symptom control.² People who want their care to center on the quality of their life may choose it, and dialysis may not help people who are elderly and frail, or who have other serious health problems such as dementia, heart failure or cancer.²

It’s active care, not the absence of care. It includes:²

• Protecting the kidney function that’s left for as long as possible
• Working with a dietitian, since what a person eats and drinks may help them feel better and may help prolong life
• Treating symptoms such as nausea and poor appetite, and attending to the person’s feelings
• Managing other problems that kidney failure causes, such as anemia
• Avoiding treatments and hospital stays that may make quality of life worse, which can mean fewer appointments, blood draws and medicines

The plan changes as health and quality of life change, and as the end of life nears, a person may choose hospice care.²

What palliative care adds

Palliative care addresses the physical, psychological and spiritual needs of someone with a serious illness.² It can be given during treatment for a serious illness,⁵ so it fits alongside dialysis as well as care without it. For kidney disease, that can mean help with tiredness, nausea, poor appetite, low mood and the weight of the decision itself, and a team that helps the family talk through what matters most before a crisis forces the question.

Weighing dialysis

There’s no wrong question to ask the kidney doctor. The National Institute of Diabetes and Digestive and Kidney Diseases suggests questions like these:¹

• Is hemodialysis the best treatment choice for me? Why?
• Is a transplant the best treatment choice for me? Why?
• Is conservative management a treatment option for me to consider?
• Is there any downside to trying dialysis first?
• Can I talk with someone who is on dialysis?

Bring the person’s own questions too: what a week on dialysis would look like, how they’d get to the center, and how they’d feel afterward. If dialysis is tried and it isn’t what the person wants, they can change their mind and talk with the doctor about something else.¹

If dialysis stops

Dialysis patients are allowed to make decisions about stopping treatment, and a person who can’t decide for themselves can have a surrogate who generally must follow their wishes.³ The National Kidney Foundation encourages talking through the reasons with the doctor, and carefully with loved ones and the treatment team.³

Families usually want to know what comes next. People who stop dialysis may live from one week to several weeks, depending on how much kidney function is left and their overall condition.³ Death from kidney failure is usually painless, and pain medicine can be prescribed for any discomfort.³ As fluid and wastes build up, a person becomes more tired, and the fluid can make breathing harder; medicines and limits on salt and fluid can help.³

Some families worry about what their faith says. Many religions teach that a person has the right to stop treatment, including dialysis, when it isn’t helping and has become a burden, and a religious adviser can help.³

Hospice and kidney failure

People with kidney failure can use hospice care if they decide to stop or not start dialysis,⁴ and a person who chooses to stop dialysis is eligible for hospice.³ Medicare, Medicaid, which is Medi-Cal in California, and most private insurance cover hospice care.⁴

Stopping dialysis isn’t always required. Guidance from one of Medicare’s contractors says hospices can serve patients who wish to continue dialysis, and when the illness that makes the person eligible for hospice isn’t related to kidney failure, Medicare can cover both the dialysis and the hospice care.⁶ Ask the hospice and the dialysis team how it would work for your person. Who qualifies for hospice? explains the guidelines doctors use.

Putting wishes in writing

The National Kidney Foundation suggests a living will that speaks to dialysis and other treatments, so the person’s surrogate has clear directions, and naming a health care agent.³ In California, Advance care planning in California explains the directive, and POLST in California explains the medical order that travels with the person.

Questions to ask the care team

• What would dialysis likely mean for her, given her other health problems?
• What would care without dialysis look like, and who would be on that team?
• Which symptoms should we expect, and what helps each one?
• If we try dialysis, how will we know whether it’s helping?
• Can palliative care start now, whatever we decide?