Palliative Care for Kidney Disease: How the Team Helps With Symptoms

Kidney disease brings more than lab numbers. As the kidneys fail, waste builds up in the blood. A person can feel sick to the stomach, lose the taste for food, itch, tire fast, and sleep poorly. Dialysis treats part of this load. But it does not lift all of it. Dialysis days can be hard days in themselves.

Palliative care is the part of care that aims at these symptoms and at quality of life. It can run alongside dialysis. It can also be the main path for a person who chooses care without dialysis. This guide shows what the team does for kidney disease. It goes visit by visit. So a family knows what to ask for. Our palliative care section holds the rest of this series.

What palliative care means in kidney disease

The kidneys clean the blood. When they stop working well, waste products build up. NIDDK calls this state uremia. It changes how food tastes. It can bring nausea, poor appetite, and a mind that feels less alert. Kidney failure also brings anemia, which causes deep fatigue, and skin and nerve problems such as itching and restless legs.

Palliative care takes this symptom list as its job. The team's goal is not to fix the kidneys. Its goal is to make each day feel as good as it can. That means less nausea and a better appetite. It also means calmer skin, more rest, and a clearer mind. NIDDK states the point in its own terms for care without dialysis. The focus of care is on quality of life and symptom control. The same focus helps a person who stays on dialysis and feels worn down by it.

The two paths: with dialysis, or without it

A person with kidney failure has more than one path, and palliative care fits each of them:

NIDDK is clear that the choice belongs to the person. For most people, dialysis extends and improves life. For some people, dialysis can feel like a burden. It does not add good time. This is most often true for people who are elderly and frail. It is also true for people who carry other serious illness. A palliative team helps a family talk this through. The team uses facts about their own case. It puts no pressure on them in either direction. Our guide on palliative care at home shows how these visits work in a home setting.

• With dialysis. Hemodialysis cleans the blood through a filter. It can help a person feel better and live longer, and it is not a cure. A palliative team can work alongside the dialysis team. It treats the symptoms dialysis leaves behind. Those symptoms include cramps, itching, poor sleep, and low mood.
• Without dialysis. This path is called conservative management. The care team keeps caring for the person without dialysis or a transplant. One goal is to keep the kidneys working as long as they can. Other goals are to treat symptoms. The team also works to keep quality of life as high as it can be.
• Later change. A person can start on one path and change. If dialysis stops, the team shifts the plan to comfort care. Hospice can step in near the end of life.

How the team helps, symptom by symptom

• Nausea and poor appetite. The team can adjust medicines, review the eating plan with a dietitian, and treat other causes such as constipation. Food advice for kidney disease is set by the person's own team. Diet rules differ by stage and by treatment.
• Fatigue and anemia. The kidney team treats anemia as part of kidney care. The palliative team helps plan the day around low energy. So rest and key tasks land at the person's best hours.
• Itching and restless legs. The team reviews skin care and medicines. It also reviews dialysis settings that can make itching worse or better. The team treats the discomfort as a real symptom, not a small one.
• Pain and breathlessness. The team treats pain with a plan that fits kidney function. Many drugs clear more slowly when the kidneys fail. Dose choices stay with the doctors who know the case.
• Sleep problems. The team looks for causes. Causes can include restless legs. They can also include naps taken at odd hours after dialysis. Then the team builds a steadier sleep routine.
• Low mood and worry. A social worker or counselor on the team gives support. The team also watches for depression. Kidney disease can bring depression on.
• Family strain. The team supports the family too, with clear talks about what to expect and what choices lie ahead.

Who is on the team

NIDDK lists the team for kidney care without dialysis. The team has a kidney doctor (a nephrologist) and a primary care doctor. It also has a nurse, a dietitian, a social worker, and a pharmacist. A palliative care service adds its own doctor or nurse. That doctor or nurse has training in symptom care. A chaplain can join if the person wants one. Each member has a part. The dietitian works on food that still tastes good. The pharmacist checks that drug doses fit the kidneys. The social worker helps the family plan and cope.

Ask who leads the symptom plan. One named lead keeps the parts from drifting apart.

Who pays for what

• Medicare pays for covered palliative care visits as medical care. This is for a person who has Medicare. The visits fall under the same part of Medicare that pays for doctor care.
• Medicaid may pay for palliative services for a person enrolled in Medicaid, under the rules of their state.
• Private pay and private insurance: private health plans often pay for palliative team visits as medical care. A service that is not covered is billed to the family. So ask the team what a visit costs. Ask before you book a series of visits.
• Hospice, when a person nears the end of life and chooses it, is a separate benefit with its own rules. The palliative team can explain when that shift makes sense.

Sample situation

Robert is 76 and has kidney failure. He goes to dialysis three days a week. On the days after dialysis he feels sick to his stomach, eats almost nothing, and itches so much at night that he cannot sleep. His wife, Carol, calls the kidney clinic and asks if this is just how dialysis has to feel.

The clinic adds a palliative nurse to his care. She reviews his medicines with the kidney doctor and the pharmacist. The dietitian shifts his meals to the hours when food tastes best to him. The team treats the itching as a main symptom and sets a sleep routine for dialysis nights. Robert stays on dialysis. Nothing about his kidney treatment changed. What changed is that his symptoms now have a named owner, and his good hours each week grew. Carol tells the clinic she wishes she had asked months sooner, which is the point this guide makes: ask early.

Questions to ask the kidney team

Caregivers carry a share of this work too. Are you the family member in this story? Then our guide on caregiver burnout names the signs to watch in yourself.

• Who on our team leads the symptom plan?
• Can a palliative doctor or nurse join our care while dialysis goes on?
• Which of these symptoms can you treat: nausea, poor appetite, itching, poor sleep, low mood?
• If we chose care without dialysis later, how would the plan change?
• How do we reach the team between visits when a symptom spikes at night?
• What does a palliative visit cost us under our coverage?

Sources

• https://www.niddk.nih.gov/health-information/kidney-disease/kidney-failure/conservative-management
• https://www.niddk.nih.gov/health-information/kidney-disease/kidney-failure/choosing-treatment