Supportive and End of life care in patients with Kidney disease

Much progress has been made in the management of kidney failure for patients with chronic kidney disease since dialysis was first introduced to the United Kingdom in the 1960’s. Advances in dialysis technology have meant that clinicians are able to offer dialysis older and frailer patients who may not have been offered dialysis previously. It is important than, that patients and carers are informed about what may happen when dialysis does not have its intended benefits or if it is no longer possible for the patient to have dialysis because of personal choice or medical reasons.

Some patients will start dialysis but find that their health declines with a worse quality of life than they had expected. In others, dialysis may not be the right choice if they are not well enough to have dialysis or may decide not to dialyse because of their age, frailty or medical conditions.

These groups of patients may benefit from supportive care and the  we hope that  leaflet gives you  information to help  with having a starting point to o understand if supportive care is needed and for you to have a conversation with the kidney team looking after you or your loved one.

What does Supportive care for kidney patients mean?

Patients on dialysis and those with advanced chronic kidney disease will often have a high burden of physical and psychological symptoms similar to that seen in other chronic conditions including cancer. Subsequently, although dialysis will provide some relief, many of these symptoms may lead to a negative impact on the quality of life experienced. Supportive care is defined as care that will improve health related quality of life for patients with kidney failure, at any age, and can be provided together with treatment intended to prolong life, such as dialysis and continuation of medical treatment to prevent transplant rejection.

The aim of supportive care is to support the person’s physical and emotional health, as well as addressing social, spiritual, and informational needs. Supportive care is suitable for kidney patients of any age, including those receiving dialysis, choosing conservative care (i.e. choosing not to dialyse), and those who have previously had a kidney transplant.

Many kidney units will now routinely identify which patients will benefit from supportive care and place patients within a supportive care framework. This is however not the case with every unit and the delivery of service varies. Some centres having highly evolved services to those centres that are just starting to introduce supportive care to their patients. Supportive care can be delivered by the renal staff and in some instances will also be delivered by outside of renal teams such as the care of the elderly medicine and the palliative care teams. The patients General Practice also informed if a patient is in receipt of supportive care so that they can access services available in the community.

Supportive care does not mean that dialysis will be withdrawn immediately - If a patient is on dialysis then they will usually remain on dialysis while receiving supporting care. It may be that the team will discuss reducing hours or the number of sessions but this will depend on how the patient feels and what the kidney team thinks is in the patients’ best interests. Most medications will also be continued but again they may be modified if deemed to be having little benefit. The aim of supportive care is to ensure that the patient is able to have a reasonable quality of life while continuing to have active treatment such as dialysis.

If you feel that you or your loved one would benefit from supportive care or want to know if your centre offers the service then please speak to the kidney team looking after you or your loved one.

Advanced care planning- what is it?

Advance care planning or ACP for short the term used to describe the conversation between people, their families and carers and those looking after them about their future wishes and priorities for care. ACP should take place prior to consideration of stopping dialysis and in some cases when the decision is made not to start dialysis. ACP is usually undertaken when a patient is thought to need supportive care.

ACP offers people the opportunity to plan their future care and support, including medical treatment, while they have the capacity to do so. ACP is an important step for improving care for people nearing the end of life and for enabling better planning and provision of care. It allows both patients and the renal team to ensure the person lives well and also dies well in the place and the manner of their choosing. 

The kidney team may use a form to document the ACP in either written or electronic format and share this with your GP. Some units will also give the patient a copy of the ACP to keep with them. It is important to understand ACP is not a legal binding document and that any decisions made by can be changed by yourself in the future if needed. It may also be advisable to speak to your solicitor about a will or lasting power of attorney so the people of your choice can make decisions about your care if you are not capable to do so in the future. Some people may also want to involve their spiritual leaders for guidance if they are religious.

 When will End of life care be needed?

Some patients sadly despite dialysis and supportive care will continue to deteriorate and may need end of life care also known as EOL care. This is also sometimes called Palliative care is a way of receiving medical care for symptoms but the underlying disease.

Many healthcare professionals provide EOL care as part of their jobs. This could be your GP, community nurse, specialist palliative care consultant, specialist palliative care nurse or specialist occupational therapists or physiotherapist. Your team may be made up of different health care professionals depending on your kidney centre. When EOL care starts the doctors will discuss with you about stopping dialysis completely and discontinuing medications that may not be of benefit. Some patients on home dialysis may chose to remain on dialysis while having EOL care if it not making them feel more unwell. As the aim is to provide comfort, any unnecessary tests and monitoring such as blood tests may also be discontinued

It is difficult to predict when someone will need EOL care will be needed but it should start when it is needed based on symptoms and patient wishes.  EOL care can be needed for a few days but in some cases may extend to a few weeks. If dialysis is stopped then many patients are unlikely to survive longer than 2 weeks, but some patients with residual  kidney function ( those still passing urine, those those with a failing transplant or on peritoneal dialysis) may live much longer and need prolonged  continuing care. EOL care is usually provided at home, but some patients are cared for in the hospital and occasionally in a hospice.

Towards the EOL, patients may start to have breathing difficulties, longer spaces between breaths, a drop in blood pressure and temperature, less desire for food or drink, sleeping for longer periods, confusion, delirium and nausea. Most of these symptoms can be managed by the palliative care team in the community with medications but on occasion an admission to hospital to control symptoms may be needed.

Dying from kidney failure is usually not painful but pain medication may be prescribed as needed and as a precaution. Toxins and fluid build up in the body will make patient feel sleepier and in some cases unresponsive. Attention is needed to oral care, eye care, bladder and bowel care. This can be done by the family, community nurses or carers visiting the home.

Reassuring your loved one it is okay to leave you can help both of you through this process. There should be no guilt attached to this decision for either the patient or the carer. The renal and palliative care team will provide help if it needed in this aspect and support the patient and carer.  Many units will also provide bereavement care for the family.

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Written by Dr Jyoti Baharani, Birmingham Heartlands Hospital University Hospitals Birmingham

Last reviewed May 2023
Next review date May 2026