When a patient decides to stop dialysis it presents health care professionals with both a unique opportunity and an important challenge in the care of their patients. Between 12 and 18% of patients may choose to stop dialysis as the burden of symptoms from co-morbidity, the presence of other life threatening illness or the burden of dialysis comes to outweigh its benefits. Key areas for consideration at this time include:
Teamwork is essential both to facilitate decision making for patients themselves and also to enable their wishes to be granted in terms of end of life care.
Guidance as to how renal palliative care services might be taken forward can be taken from the renal NSF part 2 End of Life Module(2) and also the renal palliative care initiative from the Renal Physicians Association (RPA) and American Society of Nephrologists (ASN) document Shared Decision making in the appropriate initiation and withdrawal of dialysis(3). There are also important local initiatives around the country where good practice is being developed, and it is important that these are shared so all units have the opportunity to consider ways in which they can implement change locally.
The renal NSF part 2 states that people with established renal failure should receive timely evaluation of their prognosis, information about the choices available to them, and for those near the end of life a jointly agreed palliative care plan, built around their individual needs and preferences and sets out 6 markers of good practice which can be summarised as:
The RPA ASN guideline has similar themes but stresses shared decision making with informed consent, and includes guidance on conflict resolution and advance directives well as special patient groups and trials of dialysis.
Surveys of renal units in 2004 (Gunda(4)) and 2005 (personal(5)) showed excellent treatment for patients opting not to undergo dialysis in terms of erythropoietin and blood or iron support, and already by then the majority of units had started to work with their local palliative care teams; these numbers have increased steadily since. Approximately half of units had designated pathways for patients who choose not to dialyse and though written information was poorly provided it is now much more common. There is variation in practice with the level of liaison between teams but overall an increase since 2005. In April 2008 the department of health organised a workshop with professionals from commissioning, specialist renal teams, palliative care teams, primary care teams, and patients’ representatives to look at present practice and what support will be of the greatest help to the providers of care to continue to take forward the NSF end of life module to see what can be achieved in the next 2 years.
Ways that services might develop include:
One of the key initiatives to taking this module forward is joint working between renal and palliative care teams recognising that palliative care teams are not there to take over patient’s care, but to work alongside the renal team. They work both directly with the patient and family and also indirectly by empowering renal staff in the care they give through education and information thus increasing confidence and knowledge as to how patients can receive optimal care. We should use those studies already done which look at patient preferences in end of life care and moreover ask our own patients how they would want this aspect of the service developed.
No additional funding has come with this module of the NSF; palliative care services are already stretched, particularly as so much community palliative and hospice care relies heavily on voluntary funding. Imaginative use of existing resources with a revisiting of priorities within units has taken place in many units; there is further work to be done if the opportunity of this module is to be maintained. With the recognition that care of those at the end of life demands a change of emphasis but not of intensity comes the opportunity to reassess use of resources and make a difference to the care of renal patients.
1. Chambers, EJ., Germain, M., Brown, E. (ed) (2004) Supportive Care for the renal Patient. Oxford: Oxford University Press
2. The National Service Framework for Renal Services, Part Two: Chronic Kidney Disease, Acute Renal Failure and End of Life Care
3. Renal Physicians Association and American Society of nephi-ciiogy.(2000) Shared Decision-making in the Appropriate Initiation of and Withdrawal from Dialysis, Clinical Practice Guidelines number 2. Rockville, ~D:RP A
4. Gunda, S., Thomas, M., Smith, S. (2005) National Survey of palliative care in end-stage renal disease in the UK. Nephrol Dial Transplant 20: j92-395.
5. Chambers EJ verbal presentation: Patient choice and the renal NSF Part 2
Option or Opinion October 2005
1. Smith, c., Da Silva-Gane, M., Chandna, S et al (2003) Choosing Not to Dialyse: Evaluation of Planned Non-Dialytic Management in a Cohort of Patients with End-Stage Renal Failure. Nephron din Pract 95: c40-46
2. Levy, J.B., Chambers, E.J., Brown, E.A. (2004) Supportive care for the renal patient. Nephrol Dial Transplant 19: 1357-1360
3. Fainsinger, R.L., Davison, S. N., Brenneis, C. (2003) A supportive care model for dialysis patients. Palliative Medicine 17: 81-82
4. Cohen, L. M., Germain, M.J. (2004) Measuring quality of dying in end-stage renal disease. Semin Dial 17 (5): 376-9
5. Singer, P. A., Martin, D.K., Merrijoy, K. (1999) Quality end-of-life care patients’ perspectives. J. Am. Med. Assoc., 281 2): 163-8
NKF Controlled Document No. 217, Discontinuing treatment: key issues and ethical dilemmas, written 20 June 2006. Last reviewed 20 June 2008.
The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.
Page created: 20 June 2006
Last updated: 1 May 2008
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