Palliative care for kidney diseases

Palliative care for people with kidney failure means care provided to patients with advanced kidney failure, when dialysis is either not an option or is carried out at a lower intensity than usual and the aim is to relieve symptoms that don’t respond to other treatments.

In end-stage kidney failure, the only treatment that can cure the disease is a kidney transplant. Dialysis can be used to maintain kidney function, which in turn maintains the patient’s functional capacity. Here, palliative care means care provided to patients with advanced kidney failure, when dialysis is either not an option or is carried out at a lower intensity than usual and the primary aim is to relieve symptoms that don’t respond to other treatments, such as an uncontrollable build-up of fluid.

Regardless of the type of treatment, advanced kidney failure involves an increased risk of reduced functional capacity as well as various arterial events such as heart attack or stroke.

Important

You don’t have to cope with your symptoms alone

Be sure to tell your attending physician and members of the nursing staff about your symptoms. Good symptom management is a part of all stages of illness. Its purpose is to support you in making your life with a serious illness as good as possible.

Care planning

The decision to move to palliative care is made by the attending physician in cooperation with the patient. Before making the decision, a doctor specialised in kidney diseases is usually consulted as well. To help with decision-making, the patient is informed about their treatment options, as well as how these options are likely to affect daily life, life expectancy, and quality of life.

Making a living will that anticipates different scenarios in as much detail as possible ensures that treatment decisions are made according to the patient’s values – even in situations where the patient is unable to make decisions regarding their care. That’s why it’s advisable to talk to the attending physician and members of the nursing staff while making a living will.

Most common symptoms

Symptoms of advanced kidney failure can be caused by the illness that led to kidney failure (for example, pain in those with diabetes or diseases obstructing the arteries), the kidney failure itself (for example, loss of appetite, nausea, fatigue, itching, bowel function problems), or treatments for kidney failure (for example, fatigue, dizziness or falls after dialysis).

Anaemia and build-up of fluid

Medication is effective in treating anaemia and the symptoms caused by it. In most cases, symptoms caused by fluid retention (oedema, shortness of breath) can be successfully treated with diuretics. Even in cases where diuretics are insufficient, dialysis can be used to relieve symptoms caused by fluid retention.

Symptoms of the digestive tract

The waste products accumulating in the body in kidney failure reduce appetite and may cause nausea, which increases the risk of malnutrition. These symptoms can be relieved with dietary choices. Dialysis improves the patient’s nutritional status, especially in the case of younger patients with end-stage kidney failure. Bowel function problems (diarrhoea or constipation) can usually be treated with medicines commonly used to treat the symptom.

General symptoms

Fatigue, poor cold tolerance, weakness in the legs, itching, and sleep problems are equally common among those undergoing dialysis and those whose advanced kidney failure is treated without dialysis. In these cases, treatment aims at symptom relief.

Mental coping

The level of commitment required by dialysis, the symptoms caused by the treatment, and the increased need for hospitalisation may lead to depression and reduced quality of life.

Living with a long-term illness includes both good and bad moments. It’s good to talk to the care team about how you’re coping mentally. Depression and anxiety can be managed both by talking and with medication. Peer support may also be helpful.

Palliative care: When and where?

Palliative care for patients with kidney diseases is provided according to instructions by a doctor specialised in kidney diseases or palliative care. It’s advisable to contact the unit responsible for your care if your general condition worsens, you develop symptoms that interfere with your life, or your symptoms get worse. All university hospitals, and many central hospitals, have palliative care units or persons in charge of palliative care, as well as pain clinics that can help with symptom management. Psychosocial support and talk support is also available.

When kidney failure is at an advanced stage and the patient’s functional capacity is significantly reduced, or the decision is made to stop dialysis, every patient should be assigned a palliative care provider in charge of their care. No one should be left to cope with their illness alone.

At the end of life, the care provider in charge of the patient’s care is usually in primary care and located close to the patient’s home. This can be a palliative outpatient clinic, health centre, home hospital, home care or nursing service, or a hospice or hospice care ward. The important thing is to have a plan ready for where to get help at any time of the day or week.

At the end of life, going to the emergency department is a taxing experience. That’s why it’s preferably avoided by cooperating with the care team ahead of time to prepare a plan for what to do if the patient’s condition gets worse or if their symptoms change. Unless it’s an acute medical emergency, it’s advisable to contact the unit responsible for the patient’s care before visiting the emergency department. If the patient has pre-existing access to home hospital services, a nurse or doctor can visit the patient at home and assess the situation, if necessary, or make arrangements for transfer to inpatient care (support ward) without the need to visit the emergency department