I am a nurse but now work as an academic with an interest in improving the care offered to patients with renal disease coming to the end of life. Some of these patients will have chosen to withdraw from dialysis when they feel the burden of treatment is unacceptable and no longer prolonging their quality of life. People may find it difficult to talk about stopping treatment and worry about the effect on loved ones or health care professionals. They worry about how others will feel and react or that stopping dialysis will be considered suicide. Withdrawing from dialysis is an acceptable decision when dialysis is not proving successful. If a patient decides to take this option they will still receive support and medical treatment from the hospital team. Generally, dying from kidney failure in these circumstances is a predictable process and the majority of symptoms can be identified and well managed. Patients may live for up to two weeks or longer if they still have some kidney function remaining.
On the other hand I have met patients who have made the decision not to embark on dialysis to treat their renal failure. There are many reasons for this. Some recognise that the treatment will be arduous and impact on the remainder of their life or, they may feel that the journey to hospital for dialysis three times a week is too much to contemplate. Having heart disease or other chronic conditions may make 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 cardiac 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 who choose not to embark on dialysis may live for one-to-two years, but this varies, is often difficult to predict and here lies the crux of the problem – we know little about how each person will progress. We don’t know how long people will live without dialysis if they choose not to commence. We know little about their trajectory to death or the specific treatments they may require. In a recent review of End-Stage Renal Disease without Dialysis (1) only seven articles was identified describing prognosis with conservative management of this disease. All seven articles were cohort or descriptive studies, reflecting the difficulty of randomizing patients to dialysis or nondialytic management. We can’t randomly assign people to dialysis or to conservative management – it’s not ethical. Median survival with conservative management varied from 6.3 monthsto 23.4 months. Future research needs to include developing clinical tools to predict which patients will survive longer with dialysis versus conservative management but at the moment healthcare professionals and patients and carers must rely on clinical judgment – is this good enough when people are making decisions about the end of life? This conundrum where the research isn’t available to support decision making doesn’t just occur in renal disease but in many situations that patients find themselves. There are many gaps that require addressing and the research community must continue to make the greatest effort to identify and fill these gaps in knowledge to ensure that evidence based care based on rigorous and well managed research rather than personal opinion is offered to patients. Personal opinion and experience has its place in healthcare, particularly when evidence is lacking but we must continue to strive to identify and answer those questions which need answering. Collaboration between clinicians, researchers, patients and carers is central to the identification and development of future relevant research studies.
(1) O’Connor NR, Kumar P. Conservative management of end-stage renal disease without dialysis: a systematic review. J Palliat Med 2012;15(2):228-35. Epub 2012 Feb 7.