Some people with kidney failure will decide not to have dialysis treatment. There may be many reasons for this. Some may feel that the treatment will be hard to manage and impact too much on the remainder of their life, or they may feel that the journey to the hospital three times a week is too much for them. Having heart disease or other chronic conditions may also make the renal treatments such as dialysis particularly difficult. For those who are easily confused, for example, people who have dementia, dialysis may seem frightening or upsetting.
Whilst old age itself is not a barrier to commencing dialysis, older people are more likely to have other diseases such as heart or respiratory diseases which may impact on their ability to do well on dialysis. Also, because of these additional health problems they may not be suitable for a transplant. Some patients having reached the stage where they decide not to embark on dialysis to treat their renal disease may live for one to two years without dialysis, but this varies and is often difficult to predict. Patients making the decision not to have dialysis will ultimately die, but often of other causes and many die with some kidney function remaining. The medical and nursing team will counsel and support people and their carers through these difficult decisions.
Treatment once someone decides not to have dialysis
If a patient decides not to have dialysis they will still receive support and medical treatment from the hospital team. Their GP will also be aware of the decision. Everyone involved in the patient’s care will support the decision, as long as they are happy that it is a fully informed choice.
Patients are still seen at the hospital in the kidney clinic or if unable to make the trip, they may be seen locally and sometimes in their own home. Some hospitals have nurses who will make home visits to check bloods for any change in a patient’s condition. This also helps the team decide what medication a patient will need to manage the symptoms that come about with chronic kidney disease. The kidney care team works closely with other health professionals to manage other illnesses too.
Sometimes patients may refuse dialysis treatment, but later change their mind. This is very understandable and acceptable. Everyone has the right to change their mind at any time and can discuss this with the kidney team. At some point patients may be referred to community-based agencies to help manage care at home. Everyone will work hard to ensure patients are symptom and pain free until death. Support during this time will also be offered to those who care for the person with renal disease.
Refusing dialysis treatment if your transplant fails
Some people who have a kidney transplant that then fails decide that they don’t want to restart dialysis. Again, this is an acceptable decision and patients will be supported by the healthcare team.
End of life care
Generally, dying from kidney failure is a gentle process and the majority of symptoms can be identified and well managed. Most people
who make the decision not to have dialysis have other diseases and because of this it is common to die from another illness other than renal disease. Patients with their carers can make choices about where they would like to die. Once a decision has been made the healthcare team will do their best to comply with these wishes.
We have a couple of leaflets about choosing to not have or stop dialysis that you can download:-