Kidney Research UK

Background

Founded in 1961, Kidney Research UK (formerly the National Kidney Research Fund) is the largest funder of research into the prevention, treatment and management of kidney disease. Our mission is to improve the quality of life of those with kidney disorders and to increase public awareness of kidney health.

Improving the quality of life of kidney patients involves taking a holistic approach to their care. This starts with diagnosis and early intervention, continues through to long-term treatment and management, and ends with ensuring that those for whom treatment is no longer an option receive the highest standard of care at the end of their lives.

End of Life Care

For a number of reasons, some patients with established renal failure (ERF) may decide not to have dialysis treatment, or choose to stop having it after a period of time. Others may, because of complications arising from coexisting illnesses, be coming to end of their lives whilst still on dialysis. For all of them, end of life care is essential.

The aim of end of life, also called palliative care, is to keep kidney patients with ERF comfortable and independence for as long as possible. This involves controlling the symptoms of kidney failure. Palliative care also involves a package of support that includes counselling, helping patients to put their personal affairs in order and enabling them to die in a setting of their choice.

For many years, palliative care was something provided for cancer patients. More recently, the need to extend palliative care to other patient groups has been recognised in kidney disease.

National Service Framework for Renal Services

Indeed, Part 2 of the National Service Framework for Renal Services, published in 2005, contained a number of key quality requirements for end of life care, to support people with ERF both to live out the remainder of their lives as fully as possible, and to die with dignity. The NSF called for kidney patients to receive a timely evaluation of their prognosis and information about the choices available to them, as well as to ensure that those near the end of their lives receive a care plan, jointly agreed with their renal team, which is built around their individual needs and wishes.

We strongly welcomed the inclusion of end of life care in the NSF and supported these quality requirements. We now need to work towards universal access to palliative services for all patients with ERF who have read and choose it.

Improving End of Life Care for Kidney Patients

We believe there are a number of factors that need to be recognised when developing end of life services for kidney patients.

The first is that patients therefore be given a choice of care, including how and where they would like to receive it. They should be given appropriate information to be able to make these choices, and understand that their decisions can be reversed or changed. Moreover, their condition should be carefully monitored so as to ensure appropriate modification of their care when needed.

Secondly patients may seek end of life care at different stages have very different prognoses. The length of time they have left often depends on whether they have other serious medical problems in addition to ERF, and the extent of their remaining kidney function. It can range from a number of years to a number of weeks, so the duration of end of life care each patient can vary considerably.

Thirdly it is important, that health professionals are sensitive to potential factors affecting a patient's outlook and understanding, include religious and cultural influences, domestic situation and language. There is also the question of whether a patient is capable of making these choices and, particularly in the case of end of life care for children, whether relatives and others should be involved in the decision-making.

Finally it is essential that patients have access to a multi-disciplinary renal team, which brings together renal specialists, palliative care specialists, primary care health professionals and community services. We encourage training of renal specialists in palliative care.

QoF Indicators for End of Life Care

An important step towards achieving co-ordinated care between primary, secondary, community end of life care for kidney patients is the recent inclusion in the Quality and Outcomes Framework (QoF) of the General Medical Services Contract of indicators for palliative care. These indicators call upon GPs to ensure that their practice has a complete register of all patients in need of palliative care and that it holds regular multi-disciplinary case review meetings where all patients on this register are discussed.

We are keen to ensure that GPs now implement these measures to support kidney patients with ERF to live life as fully as possible and enable them to die with dignity in a setting of their own choice.

Kidney Research UK

April 2007