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Advanced kidney disease: choosing not to dialyse

Conservative kidney management is defined as full supportive care for those with advanced kidney failure who have decided with their carers and the clinical team to not commence dialysis.

Dialysis was first introduced in the UK in 1956.1 Since then dialysis has become more accessible for patients to be treated who may previously have been declined. The prevalence of advanced kidney disease increases with age. Chronic kidney disease (CKD) is classified into five stages using a modified version of the system which originated in the USA.2 Patients with advanced kidney disease refer to those with late stage 4 and stage 5 CKD.3

The median age of those who commence dialysis in the UK is 65 years.4 More than half of these patients have one or more comorbidities.5 Elderly patients on dialysis have a higher risk of mortality compared to some cancers particularly if they are aged more than 80 years old.6 The expected remaining life years of a patient on dialysis aged 65-69 years is 3.9 years compared  to 17.2 years for an aged matched individual in the general population.7

Deciding not to have dialysis

Patients start being considered for dialysis when their estimated glomerular filtration rate (eGFR) is between 15-20 and decisions are made on which dialysis modality is appropriate for them. The European Best Practice Guidelines recommend that renal replacement therapy should commence when a patient with an eGFR<15ml/min/1.73m2 has symptoms or signs of uraemia, fluid overload or malnutrition in spite of medical therapy or before their eGFR has fallen below 6ml/min/1.73m2 in an asymptomatic patient.8 However for some patients dialysis is not the preferred option.

The 2004 National Service Framework part 1 emphasised the importance of patient choice and the need for education in the phase leading up to potential renal replacement therapy.9 The UK Renal Association outlines the use of predialysis education programmes so that patients can receive adequate information about different treatment modalities including the benefits and burdens of renal replacement therapy and the option of not pursuing dialysis: conservative kidney management.10 What is conservative kidney management? Conservative kidney management is defined as full supportive care for those with advanced kidney disease who have decided with their carers and the clinical team to not commence dialysis.3

The conservative kidney population

Conservative kidney patients tend to be older, have comorbidities and are more likely to have a poor functional status.11 The prevalence of cognitive impairment also increases with advancing renal failure, independent of age and other confounding factors.12 There is increasing awareness however that if patients are conservatively managed it does not mean imminent death13 but a period of stability can be maintained and is often  preferred instead of  a life  being led by regular visits to hospital for dialysis. However conservative care patients do still have significant symptom control needs. Common symptoms experienced include fatigue; itch and drowsiness14 and are comparable to patients with advanced cancer.15

Prognosis of kidney disease

For patients already established on dialysis who are withdrawing from renal replacement treatment, the survival tends to be on average 8-10 days.16 However this is not the same for conservatively managed patients. The prognosis of these patients is variable. The median survival in patients opting for conservative care can vary from six months11 to nearly two years.17 There is increasing evidence that for patients who are over 75 with poor performance status or high comorbidity scores, renal replacement therapy may not have a survival benefit compared to conservative management.18 This is particularly if patients have ischaemic heart disease.19

What does conservative care consist of?

Conservative care management includes continuing to monitor fluid balance, treatment of anaemia, and calcium/phosphorus in a similar way to patients on dialysis to help maintain symptom control and a good quality of life. The framework for implementation highlights the importance of integration with primary care and specialist palliative care and reinforces the importance of multidisciplinary team working with each patient having a key worker ensuring co-ordination of care.3

Anaemia management

Patients with chronic kidney disease are often anaemic due to a deficiency of erythropoietin a protein naturally secreted by the kidneys, which helps to make red blood cells. When other causes of anaemia are excluded erythropoiesis stimulating agents that are similar to erythropoietin may be given as a subcutaneous injection usually monthly or fortnightly by community nurses with the aim of keeping haemoglobin levels between 10 and 12g/dl for adults.20 To maintain iron stores ferritin levels are monitored and intravenous iron may be recommended.

Bone metabolism

The kidney has an integral role with the liver in maintaining the balance of calcium and phosphate by converting vitamin D to the biologically active 1,25-dihydroxycholecalciferol.21 In advanced kidney disease this production declines causing less calcium to be  absorbed, which results in the development of high phosphate and low calcium levels that causes parathyroid hormone (PTH) to be released. This hormone draws calcium and phosphate from the bones to try and raise blood calcium levels. Patients are treated with dietary phosphate restriction, phosphate-binding tablets and vitamin D supplementation if necessary. A renal dietician can help develop a dietary plan to control phosphate levels in the blood.

Advance care planning

The End of Life Care Strategy highlighted the importance of enabling patients to express preferences regarding end of life care including where their preferred place of death might be.22 Conservatively managed patients are more likely to die at home or in a hospice.23 Advance care planning is the process of discussion between an individual and their healthcare professional about their future care needs and wishes.24

Helping patients with advanced kidney disease establish their priorities for end of life care allows them to maintain control over their future care and prepare for their death.25 Completing an advance care plan can help ensure that a patient’s wishes are respected when they no longer have the capacity to be involved in medical decision making. A randomised controlled trial showed that end of life wishes were more likely to be known and followed in the patients who had undertaken advance care planning (86% versus 30%) for patients who were aged over 80 years.26 The process can also enhance rather lessen hope in patients with advanced kidney disease.27

Palliative care

There is increasing recognition of the need for specialist palliative care involvement for conservative care patients. Part 2 of the National Service Framework (NSF) for renal disease in the UK included a quality requirement for end of life care and recommended that patients with advanced CKD should have a jointly agreed palliative care plan with renal networks establishing links with palliative care services.28 A palliative care approach is important not just at the end of life but can also be beneficial through the whole conservative care patient’s journey for symptom management and advance care planning. The gold standards framework prognostic indicator guide (PIG), which was developed for primary care can be used to help identify patients who may benefit from a palliative care approach and includes specific indicators for advanced renal disease.29

Models of care

Conservative care patients may continue to be seen by the renal team or are discharged back to the care of the primary care team. The framework for end of life care in advanced kidney disease reinforces the importance of co-ordination of service delivery between renal units, palliative care services and primary care.3

A useful model that has been established is the development of joint renal palliative care clinics.  Patients are able to choose not to dialyse but continue to be regularly reviewed in the same renal clinic by the multidisciplinary team (MDT). The key is that a palliative medicine consultant reviews the patients with input from the renal consultant if needed. There is increasing recognition of the benefits of collaborative working of palliative care teams with the renal teams and the concept of renal palliative care.30 Patients within this model of care gain greater access to palliative care services and are less likely to be admitted to or die in hospital.18 

Conclusion

There is increasing evidence that deciding not to have dialysis may be an appropriate choice especially for elderly patients with multiple comorbid conditions.31 With the projected increase in the number of older people and the growing incidence of diabetes mellitus there will continue to be patients with advanced kidney disease. Recognising their needs and how to manage them will be an important consideration for all healthcare professionals working with elderly patients. The challenge has been to identify those patients for whom conservative management is the most appropriate. However  recent research highlights that for patients over 75 years old the survival advantage that dialysis allows is lost if patients have high comorbidity especially ischaemic heart disease19 This should be taken into consideration when discussing with patients and their relatives their choices prior to initiating renal replacement therapy. The question is not whether to dialyse or not, but who would benefit from conservative management care?

Conflicts of interest: none declared

References

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