4.6 Conservative Management of ESRF, Palliative Care and Withdrawal from Dialysis

4.6.1 Conservative/Supportive Management of ESRF

Renal Replacement Therapy may not be appropriate for all patients reaching end stage renal failure (ESRF) for many reasons including the presence of overwhelming co-existing medical conditions. While ESRF is a terminal condition, death is usually not a sudden occurrence. More common is a slow decline in general health with malnourishment and wasting related to decreased appetite and progressive metabolic disturbance. Inability to excrete excess fluid and acid, the production of which overwhelms the natural corrective mechanisms, eventually compound the picture.

There is a large potential for alleviating the symptomatology of advanced chronic renal failure using drug therapy particularly diuretics, erythropoietin, iron and hypotensive drugs. The management of patients with progressive renal failure in whom dialysis is inappropriate or who choose not to start dialysis has been raised from the level of frustrating observation to a worthwhile therapeutic endeavour.

Renal units are now managing non RRT patients with the fullest resource package which the renal services can offer. This approach avoids the 'rejection' which may be experienced if the patient is 'not for dialysis' and avoids burdening the GP with medical conditions better managed by specialists. Similar to the experience of patients destined for RRT, the unit liaison team (See Section 4.2) can input education and advice for patients, their carers and families at an appropriate time. Emphasis is put on the control of the symptomatology of renal failure and on providing the appropriate level of psychosocial support. Nutritional advice, counselling, social work advice and pharmacy support can all be brought to bear in a robust support package for conservatively managed patients. Since the general trend is to start people on dialysis earlier while natural renal function is still maintaining reasonable health, the outlook for patients embarking upon conservative therapy rather than RRT can be many months or sometimes even years. Regular outpatient clinic support can augment support packages in the home and community.

4.6.2 Palliative Care

Eventually the support package must give way to palliative care when liaison with a different set of agencies is necessary. Much headway is being made by some centres in integrating care with hospices and the support agencies associated with disease states more traditionally managed in this sector. One of the most distressing side effects of renal failure can be pulmonary oedema (fluid on the lung) which can resemble an asthmatic attack. The nephrology ward has the resources to deal with this complication and an open door policy for urgent admissions of patients known to be in the terminal phases of chronic renal failure can be agreed with GPs, district nurses and hospices.

4.6.3 Withdrawal from Dialysis

Hitherto it has been an unusual occurrence for patients to voluntarily withdraw from dialysis. By contrast, 20% of patients undergoing dialysis in the United States eventually decide to withdraw from dialysis (ref.12). The reasons are varied but commonly there is a breakdown of morale often related to overwhelming medical problems (ref.83,84). Failure of successful vascular access for haemodialysis is a particularly wearing complication often requiring multiple hospital admissions and operations. Data on withdrawal has not been systematically collected in the UK. However the numbers are thought to be less than in the US but are expected to increase as the mean age and co-morbidity burden of the dialysis population rises. (See Section 2).

Improvements in the holistic understanding of the patient experience in ESRF has revealed the major difficulties patients can experience in making the decision to withdraw from dialysis therapy. At this stage in the disease process, the reason for continuing dialysis is often not a spiritual drive to survive. Patients often continue to dialyse for the sake of their families or even for the sake of the renal unit staff whom they perceive will be let down by their decision to withdraw. Other patients require reassurance that their decision will not be construed or recorded as suicide. Simply raising the issue as a discussion point often comes as a major relief to the patient which can pave the way for a constructive discussion on the process and the experience of discontinuing treatment.

When patients withdraw from dialysis, most will be oliguric (little urine reflecting zero natural renal function). The mean survival time is at most 2-3 weeks without dialysis. It is important that the advice and management plan is targeted to allow patients to settle their affairs and come to terms with the needs of their families and carers. Clear lines of liaison need to be agreed between the patient, the GP, community nurses, local hospice and nephrology ward. In this way management is optimised and many of the fears and uncertainties surrounding the process can be removed.

Link to National Service Standard 6