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Assessing palliative care needs in end-stage kidney disease

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Noble, H., Lewis, R.
(2008) Assessing palliative care needs in end-stage kidney disease. This is an extended version of the article published in Nursing Times; 104: 23, 26-27.
This article outlines the various issues that need to be considered in providing palliative care for patients with stage 5 chronic kidney disease. First, treatment decisions and issues surrounding the decision-making process are discussed. The importance of good symptom management in end-stage disease is emphasised, as well as ensuring that patients have the opportunity to discuss their wishes regarding end-of-life care.


Helen Noble, BSc, DMS, Cert Couns, RGN, is senior clinical nurse specialist in renal supportive care, Barts and the London NHS Trust, and doctoral student, City University; Rachel Lewis, MA, BA, RSCN, ENB 136, RGN, is community matron, Manchester Community Health.


This article highlights the needs of people dying with chronic kidney disease (CKD), and how different services need to work together across traditional boundaries to provide high-quality end-of-life care for all.

The UK annual incidence of stage 5 CKD is 100 per million of population (Hamer, 2006). Given the ageing population, the number of people dying with and from CKD is growing (Murtagh et al, 2006a; Cohen and Germain, 2004). As well as being older, patients with CKD often have several co-morbidities including diabetes, congestive heart failure and malignancy. Patients with the disease have a shortened life expectancy and co-morbidities shorten this further.

CKD describes a permanent loss of kidney function, which generally occurs over a period of time. Kidney function naturally becomes impaired with age and in many older people will go unnoticed as they remain in good health. Relatively very few people die from the disease (most people with CKD die from other vascular diseases) and management principles are based on reducing cardiovascular risks and promoting a healthy/healthier lifestyle.

The most appropriate time to move patients with long-term conditions to a palliative pathway is not always obvious but, even when death is imminent, many patients with kidney disease and their families are given little or no opportunity to discuss their wishes for end-of-life care (Noble and Rees, 2006).

Increased awareness of the palliative care needs of people diagnosed with advanced life-limiting renal disease (Douglas et al, 2007; Murtagh et al, 2007) challenges clinical teams to provide optimal care in a variety of healthcare settings, including, where appropriate, in patients’ homes or other place of residence. These patients carry a high symptom burden (Cohen et al, 2006) and information needs to be shared across clinical teams if these are to be appropriately managed and minimised.

For a small but increasing number of people, kidney disease is progressive and its management is complicated by other coexisting long-term conditions. As it reaches stage 5 (see Table 1), crucial decisions need to be made regarding patients’ future care.

Table 1. Stages of CKD

Stage Description Glomerular filtration rate (GFR) ml/min/1.73m2
1 Slight kidney damage with normal or increased filtration More than 90
2 Mild decrease in kidney function 60-89
3 Moderate decrease in kidney function 30-59
4 Severe decrease in kidney function 15-29
5 Kidney failure, requiring dialysis or transplantation Less than 15

Irrespective of the treatment pathway chosen, supportive and palliative care should begin at the time of diagnosis and run in parallel with their treatment plan, increasing in importance as the condition progresses (Noble and Kelly, 2006).

Although palliative care programmes have traditionally focused on supporting people with cancer, the need for similar programmes for people with life-limiting long-term diseases is now well recognised (Murray and Sheikh, 2008). The National Service Framework for Renal Services (Department of Health, 2005) includes a section on end-of-life care, which focuses on the need to expand integrated palliative care services for people with CKD.

As the number of older people starting dialysis increases, there is a need for increased experience in managing these patients and treatment outcomes need to be identified. It has become clear that offering dialysis to some patients does not prolong their life and, in some instances, contributes to a significant deterioration in their quality of life.

This was demonstrated by Smith et al (2003), who studied the factors influencing the recommendation for non-dialytic treatment in patients approaching stage 5 CKD and the subsequent outcomes in those opting not to have dialysis. They concluded that in high-risk, highly dependent patients, the decision not to have dialysis had little impact on their survival and that in such cases this treatment risked the unnecessary medicalisation of death. Lamping et al (2000) found 50% of patients over the age of 80 had died within 12 months of starting dialysis, compared with 20% aged 70-74.

Dialysis is a demanding and arduous treatment, particularly in elderly people. Consequently, when helping patients to make decisions about treatment. the compromise between potential for life-sustaining therapy and the impact on quality of life needs to be made as explicit as possible.

Reaching a consensus on treatment decisions

Choosing the treatment pathway most likely to optimise individual well-being is not always obvious and we have identified certain principles that make this more likely. These are outlined below.

Being realistic

A number of people reaching stage 5 CKD will be clinically unsuitable for dialysis. This is generally due to functional decline, frailty and/or coexisting conditions such as heart failure, all of which make successful dialysis therapy very unlikely. There may be little benefit in offering some people treatment that is likely to be futile. In these circumstances, patients and carers need to understand the reasons and feel involved in the decision-making process.

Engaging patients and relatives/carers in decision-making
While it seems obvious that patients should be involved in treatment decisions, in our experience, it has proved vital to include families as well, particularly in circumstances where treatment outcomes are unknown. This often provides patients with invaluable support and encourages discussions regarding end-of-life preferences.

Skilled communication
Healthcare professionals need good communication skills in order to facilitate an informed ‘not for dialysis’ decision. A full explanation of possible outcomes and disease progression and prognosis is necessary. The ongoing facilitation and continuity of future management decisions needs proactive coordination.

Supporting the decision
Once a decision not to have dialysis has been agreed, it is important that the reasons are revisited at regular intervals and patients and relatives are reassured this was the right decision.

Communicating decisions to other services
In lieu of the single patient record, it is important to ensure that any service involved in patients’ care is aware of treatment decisions and the reasons. Care plans should be recorded in patients’ hospital records, their GP should be informed and they should be registered on the Gold Standards Framework register (Thomas and DH, 2005). Additionally, in areas where initiatives such as patient-held records exist, copies of treatment decisions and key workers’ contact numbers should be included.


Increasingly, patients with stage 5 CKD are managed in specialist ‘conservative or supportive management’ clinics. These are typically multiprofessional and, as well as managing kidney disease, they facilitate treatment options with patients and families and support decisions made. Increasingly, these services include a palliative pathway for patients in which discussions regarding future care typically occur over a period of time and extend to home visits and involve palliative and primary care services where appropriate.

Despite the recognised palliative care needs of people with CKD, a recent UK survey showed provision to be variable (Gunda et al, 2004). Only 27 of the 69 renal units surveyed (39%) employed staff who offered a palliative care service to renal patients. Of these 27 units, 19 stated that staff involved in offering palliative care to renal patients did so in less than four hours a week.

People choosing to withdraw from dialysis

Patients who start dialysis have to endure its associated symptoms, as well as those associated with ageing and co-morbidities such as diabetes (Murtagh et al, 2007). Both the burden of the disease and that incurred by dialysis can become too much for them and physical deterioration often occurs in spite of this treatment. Even in patients without marked functional deterioration, adherence to the rigours of dialysis can often dramatically reduce their quality of life. A review of such treatment and its impact on patients should be carried out at regular intervals. In those who choose to stop, as opposed to those who do not start it, the time to the terminal phase is generally reduced.

Advance care planning in the management of potentially life-limiting conditions can be a useful tool in formalising patient wishes and determining limits to interventions in particular circumstances. Davison and Simpson (2006) confirmed that such discussions were not a major concern for patients on dialysis, but they often felt their renal team’s reluctance to discuss end-of-life issues was a barrier to hope. In addition, despite being aware of the uncertainty associated with their prognosis, patients still actively sought such information and this helped them to feel empowered.

Meeting patients’ holistic needs requires a shift from the traditional disease-focused approach towards a more patient-centred one in which quality of life takes precedence over biochemical targets and other medically driven outcomes. As their health and well-being deteriorate, patients should be encouraged and supported to review treatment options they might still benefit from and can tolerate.

Integrated care planning

Where possible and appropriate, patients should be managed in the community, in view of issues such as patient choice, pressures on inpatient beds and the increasing risk of hospital-associated infections. Various national initiatives aimed at optimising end-of-life care locally are available, including the Liverpool Care Pathway (Marie Curie Palliative Care Institute, 2008; Ellershaw et al, 2003), The Gold Standards Framework (Thomas and DH, 2005) and Preferred Priorities of Care (Pemberton et al, 2003). The LCP has recently been revised and another version will be launched as the Renal Liverpool Care Pathway, specifically aimed at those dying with end-stage renal disease (ESRD).

Patients’ care plans should include details of the professionals who are involved in their care delivery, triggers for review and named people to contact for advice and support. Care plans are held by patients, but other services, such as GPs, community palliative care teams and out-of-hours services, will need to be aware of them.

The elements of a good death for people with kidney disease are similar to those dying with other conditions and include: time to say goodbye; a brief death; maintaining dignity; choice over place of death; easy access to palliative care; and bereavement services for relatives (Germain et al, 2007). Symptoms at the end of life can include retained secretions, shortness of breath, agitation, nausea and vomiting, pain and pruritus. Symptom management takes place within a multidisciplinary team in a hospital ward, a hospice, a nursing home or in the community and on an individual basis, as many patients have very individual pathways to death with specific requirements.

In some parts of the UK, specific services have been established to care for those either withdrawing from or choosing not to start dialysis (Noble and Chesser, 2007; Murtagh et al, 2006a). Here, the renal supportive and palliative care nurse has a central role in developing cross-boundary working relationships with members of the community team including patients’ GPs, district nurses, community matrons and other palliative care nurse specialists. They may also need to establish other links depending on patients’ co-morbidities. Contact may need to be made with practitioners with experience in other areas such as diabetes, heart failure and chronic obstructive pulmonary disease.

Other staff who may be involved in the care of patients with ESRD include social workers or renal counsellors, and input should be tailored to individual needs and preferences. As death approaches, support for families and carers after death should be taken into account, and bereavement support provided if required.

Symptom management

Murtagh et al (2006b) undertook a systematic literature review to assess the overall symptom burden in stage 5 kidney disease. All the studies included patients on dialysis or those who were approaching this point. The review concluded that their overall symptom burden is high, and symptom prevalence is the same as or greater than that of other patients with end-stage diseases, both with cancer and non-cancer diagnoses. While the knowledge base in this area is very small, a recent study confirmed that symptoms of those patients who opt not to have dialysis are similar to those on dialysis (Murtagh et al, 2007).

It is increasingly recognised that poor symptom control in people with stage 5 CKD is due to focusing on the disease itself rather than symptoms (Ferro et al, 2004). Symptoms may be related to co-morbidity rather than renal disease. Good symptom control needs to be proactive and include detailed and thorough assessment at regular intervals (Murtagh et al, 2006b). Shared care, integrated care plans and formalised communication streams promote continuity and optimise care provision wherever it is delivered.

Pain experienced by patients with stage 5 CKD is often caused by co-morbidities as well as the renal disease itself. It can include ischaemic pain from peripheral vascular disease, neuropathic pain often related to diabetes and bone pain from osteoporosis (Ferro et al, 2004; Davison, 2003).

The World Health Organisation (WHO) analgesic ladder approach to managing pain should be used for people with stage 5 CKD (Murtagh et al, 2006b; Ferro et al, 2004). Combined with reviews of opioid use in renal disease and experienced clinical opinion, Murtagh et al (2006b) provided useful guidelines for practice (Table 2).

Table 2. A summary of pain relief for people with stage 5 CKD.

Step 1 Paracetamol 1g qds
Step 2 Tramadol 50-100mg qds AVOID codeine, dihydrocodeine and dextropropoxyphene
Step 3

Moderate pain and outpatient/at home: buprenorphine, oxycodone, hydromorphone or fentanyl. Evidence suggests that fentanyl is the safest drug to use in stage 5 CKD

Severe pain and inpatient: Fentanyl (25 mcg starting dose) subcutaneously as required, then in a continuous subcutaneous infusion if necessary.

Uraemic pruritus is a common problem for people with renal disease but the evidence supporting pharmacological treatments is limited (Murtagh et al, 2006b). Management may include:

  • Exclusion of other causes of pruritus, including systemic or dermatological causes;
  • Correction of biochemical imbalances such as high calcium, or parathyroid levels;
  • Identification of xerosis (dry skin) and the use of liberal emollients;
  • If pruritus is widespread, terfenadine may be used;
  • For widespread itch that disrupts sleep more sedating antihistamines such as chlorphenamine may be used;
  • Another medication (to be used with caution) is ondansetron.

While pruritus remains difficult to treat, it can have a significant impact on patients’ quality of life. Therefore, agreeing a management plan with them and a trial of different interventions to identify those that benefit may be helpful (Murtagh et al, 2006b).

Anaemia develops in the early stages of renal disease and is primarily due to a decrease in the production of erythropoietin by the kidney. Symptoms of anaemia can include weakness, chronic fatigue, breathlessness and a reduction in libido. Recombinant human erythropoietin therapy in the form of an injection for those with CKD can lead to a correction of the anaemia and improved quality-of-life (Shirani and Finkelstein, 2004). Iron stores should be monitored at regular intervals, with IV iron administered in accordance with local protocols.

Fluid overload
Patients with stage 5 CKD not receiving dialysis may retain fluid if their intake exceeds their urine output plus their insensible losses. Avoiding salt and salty foods and reducing fluid intake may be enough to prevent serious problems with fluid overload. Diuretics such as furosemide up to 250-500mg/day and metolazone 2.5mg daily can be used. Sometimes patients may require hospital admission for IV diuretics.

Nausea, vomiting and anorexia
Nausea and vomiting are often caused by uraemia and an increase in these symptoms is associated with declining kidney function. Regular anti-emetics should be prescribed and their effectiveness regularly reviewed.

Nutrition is often identified as a problem for people with stage 5 CKD, whether or not they are on dialysis. Anorexia is common, particularly in elderly patients and those with co-morbidities. There are several reasons for poor nutrition in this group, including uraemia, anaemia and depression. Possible reasons for anorexia should be carefully explored and treated accordingly. This may include erythropoietin therapy and antidepressants. Taste disorders have also been linked to anorexia in kidney disease. Zinc deficiency should be considered and a trial of oral zinc 220mg daily may be prescribed if appropriate (Germain and McCarthy, 2004).

Problems of sleep disturbance have been reported in 50-90% of dialysis patients (Germain and McCarthy, 2004) and in patients who opt not to have dialysis, although the evidence in this group is limited (Murtagh et al, 2006a). Hypnotics with a short duration of action should be considered and may include zolpidem 5-10mg, temazepam 7.5-30mg or flurazepam 15-30mg at bedtime (Germain and McCarthy, 2004).

Fatigue and lethargy
Renal disease causes lethargy, which can be extremely debilitating and is difficult to manage successfully but should include optimising haemoglobin levels to between 11g/dl and 12g/dl (Renal Association, 2003). Lack of activity can lead to further lethargy so it should be encouraged if possible. Depression should also be treated and good nutrition encouraged if possible (Germain and McCarthy, 2004). Simple achievable goals should be identified with patients to improve well-being once accomplished.

Restless legs
As kidney function deteriorates, between 20-40% of patients suffer from uraemia-associated restless legs syndrome (RLS). While this may seem an innocuous symptom, it can be distressing and debilitating for patients. Several biochemical abnormalities have been associated with RLS including anaemia and low ferritin levels. Where appropriate, biochemical abnormalities should be corrected. Other interventions may include moderating the dialysis prescription, and/or medications such as clonazepam or temazepam (Chambers et al, 2004).

Muscle cramps
These are common in patients with stage 5 CKD, whether or not they are on dialysis. Modification of the dialysis prescription can reduce the likelihood of cramps during such treatment. For those not on dialysis, or when cramps are experienced in between dialysis sessions, quinine sulphate can be used to pre-empt symptoms. Other preparations such as vitamin E and oxazepam have also been used to treat cramps (Chambers et al, 2004).

Terminal phase
A patient with deteriorating kidney function who chooses not to have dialysis has an average survival time of 6.3 months (Smith et al, 2003). In those who withdraw from dialysis, the average time to death is eight days. When asked, patients with renal disease and their families believed a ‘good death’ would be free from pain, peaceful and brief, with loved ones present and in a place of their choosing. Relatives have expressed moderate satisfaction regarding the actual death, but they reported an unacceptable degree of pain and suffering for patients (Cohen and Germain, 2004).

Detailed and skilled palliative care planning in the terminal phase of CKD is paramount. It is equally important to ensure the plan is communicated to all relevant parties and is regularly reviewed. Establishing patients’ wishes and family support before the event and over time is key to optimising patient care at this difficult time. Whether the place of care is a hospice, hospital or the patient’s home, extensive liaison between renal specialists, patients and families and other care providers is essential if we are to help all patients have ‘a good death’.

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