📋 Key Information Summary
- Palliative care should be integrated early in advanced CKD (stages 4–5) alongside active disease management, not reserved for the final days of life.
- Conservative kidney care (CKC) is a valid, patient-centred treatment pathway for selected patients with CKD stage 5 who choose not to commence dialysis.
- Shared decision-making using tools such as the Australian Renal Supportive Care guidelines is essential when discussing dialysis versus conservative management.
- Dialysis withdrawal accounts for approximately 20% of deaths in Australian dialysis patients and requires careful symptom planning, family support, and palliative care involvement.
- Uraemic symptoms — including pruritus, nausea, anorexia, fatigue, restless legs, and cognitive impairment — significantly impair quality of life and require proactive pharmacological and non-pharmacological management.
- Medication review is mandatory in advanced CKD; renally cleared drugs require dose adjustment or avoidance, and deprescribing should follow structured frameworks (e.g., STOPPFrail, STOPP/START).
- Opioid use in CKD requires caution: avoid morphine and codeine; preferred agents include hydromorphone, fentanyl, and methadone with appropriate dose reduction.
- Advance care planning (ACP) should be documented using state-based frameworks (e.g., Advance Care Directive in SA, Resuscitation Plan in NSW) and revisited regularly.
- Aboriginal and Torres Strait Islander Australians with CKD experience disproportionately higher rates of ESKD and face barriers to palliative care access, requiring culturally safe, community-based approaches.
- The palliative care team, nephrology team, GP, and community services must collaborate using a multidisciplinary model; referral to specialist palliative care is indicated for complex symptom management.
- After dialysis withdrawal, median survival is 8–12 days; anticipatory prescribing of subcutaneous medications for pain, dyspnoea, nausea, and agitation is essential.
- Renal dietitian, social work, and spiritual care support are integral components of the CKD palliative care multidisciplinary team.
Introduction & Australian Epidemiology
Chronic kidney disease (CKD) affects approximately 1.7 million Australians, with prevalence increasing with age and among Aboriginal and Torres Strait Islander peoples. As CKD progresses to stage 4–5 (estimated glomerular filtration rate [eGFR] <30 mL/min/1.73 m²), the burdens of treatment — particularly dialysis — may outweigh benefits for some patients. Palliative care in CKD encompasses symptom management, advance care planning, shared decision-making regarding dialysis initiation or withdrawal, conservative kidney care pathways, and end-of-life care.
The Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) reports that approximately 12,000 Australians receive maintenance dialysis. Withdrawal from dialysis accounts for roughly 20% of all deaths in this population, making it one of the leading causes of dialysis-related mortality. Despite this, palliative care referral rates among nephrology patients remain lower than in oncology, highlighting an unmet need.
Palliative care in CKD differs from cancer palliative care in several key ways: the trajectory is often unpredictable with episodic deterioration and partial recovery; uraemic symptoms overlap with medication side effects; and patients frequently retain decision-making capacity until close to death. This demands a flexible, integrated model where supportive care commences alongside active nephrological management, not as a sequential step after "all options are exhausted."
The Kidney Health Australia–Caring for Australasians with Renal Impairment (KHA-CARI) guidelines, the Australian and New Zealand Society of Nephrology (ANZSN), and the Palliative Care Australia standards all support early integration of palliative care in CKD management. This article provides an evidence-based framework for clinicians managing patients with advanced CKD who may benefit from a palliative or supportive care approach.
Conservative Kidney Care
Conservative kidney care (CKC) is a planned, comprehensive treatment pathway for people with CKD stage 5 who choose not to commence dialysis, or for whom dialysis is unlikely to confer meaningful benefit. CKC is not "doing nothing" — it is an active, multidisciplinary approach focused on prolonging life where possible, managing symptoms, preserving quality of life, and supporting end-of-life care.
Who Is CKC Appropriate For?
CKC is most appropriate when the anticipated survival benefit from dialysis is small and the treatment burden is high. Indications include:
- Age >80 years with multiple comorbidities (particularly ischaemic heart disease, diabetes, frailty)
- WHO performance status 3–4 or Clinical Frailty Scale ≥5
- Severe irreversible comorbid conditions (e.g., advanced dementia, metastatic cancer, severe heart failure)
- Patient preference after informed, shared decision-making
- Limited vascular access or peritoneal dialysis feasibility
Components of CKC
Medications to Continue in CKC
| Medication Class | Purpose | Notes |
|---|---|---|
| Antihypertensives | Blood pressure control, symptom relief | May simplify regimen; avoid over-treatment causing hypotension |
| Diuretics (frusemide) | Fluid overload, dyspnoea | Higher doses often required (125–250 mg PO daily); monitor electrolytes |
| Phosphate binders | Pruritus prevention, vascular calcification | Calcium carbonate 500 mg PO with meals; sevelamer if intolerant |
| Sodium bicarbonate | Metabolic acidosis | 500 mg–1 g PO TDS; reduces muscle wasting and dyspnoea |
| ESAs (if on treatment) | Symptomatic anaemia | Continue if quality-of-life benefit evident; cease if futility |
| Active vitamin D | Bone health, PTH suppression | Calcitriol 0.25 mcg PO daily; monitor calcium |
Medications to Deprescribe in CKC
- Statins — unlikely to provide benefit in limited life expectancy
- Proton pump inhibitors — review ongoing indication
- Antiplatelet agents — unless clearly indicated for symptom management
- Allopurinol — unless active gout
- Supplements (folate, B-vitamins) — review necessity
Dialysis Withdrawal
Dialysis withdrawal is the planned cessation of maintenance dialysis in patients for whom ongoing dialysis no longer aligns with their goals of care. ANZDATA data indicate that approximately 20% of deaths in Australian dialysis patients follow dialysis withdrawal, and this proportion increases with age. It is a legitimate, ethically supported medical decision that requires careful communication, multidisciplinary support, and robust symptom management.
Indications for Dialysis Withdrawal
- Patient request after informed discussion about goals of care
- Increasing frailty with dialysis-associated complications (recurrent hospitalisations, intradialytic hypotension, access failures)
- Progressive cognitive decline or dementia limiting quality of life
- Severe vascular access exhaustion with no further options
- Intercurrent illness making ongoing dialysis futile (e.g., advanced malignancy, severe stroke)
The Withdrawal Process
Anticipatory Prescribing — Post-Withdrawal Symptom Management
Uraemic Symptoms
Uraemic symptoms are a direct consequence of toxin accumulation in advanced CKD and significantly impair quality of life. Patients with CKD stage 5 not on dialysis experience a median of 8–12 symptoms concurrently. Proactive, systematic symptom assessment and management is a cornerstone of CKD palliative care. Validated tools include the Integrated Palliative Care Outcome Scale — Renal (IPOS-Renal) and the Palliative Care Outcome Scale — Symptoms — Renal (POS-S Renal).
Common Uraemic Symptoms and Management
| Symptom | Prevalence | First-Line Management | Second-Line / Refractory |
|---|---|---|---|
| Fatigue | 70–90% | Exercise programme, sleep hygiene, treat anaemia (ESAs if indicated), correct iron deficiency | Methylphenidate 2.5–5 mg PO mane (specialist); address depression |
| Pruritus | 40–70% | Emollients (sorbolene ± glycerol), phosphate binders, optimise dialysis if on RRT | Gabapentin 100 mg PO post-dialysis or 100 mg PO nocte (renal dose); pregabalin 25 mg PO alternate nights; UVB phototherapy |
| Nausea / Vomiting | 30–60% | Haloperidol 0.5–1.5 mg PO/SC TDS; metoclopramide 10 mg PO TDS (max 3 days in elderly) | Ondansetron 4 mg PO/SC BD (QTc monitoring); cyclizine 50 mg PO/SC TDS; dexamethasone 4–8 mg IV/SC mane |
| Anorexia | 30–50% | Small frequent meals, relaxed diet liberalisation in CKC, nutritional supplements, dietary counselling | Prednisolone 5–10 mg PO mane (short course); megestrol 160 mg PO daily (limited evidence) |
| Restless Legs Syndrome | 20–40% | Iron studies — replete ferritin >200 mcg/L; gabapentin 100–300 mg PO nocte (renally adjusted) | Clonazepam 0.5 mg PO nocte (short-term); pramipexole 0.088 mg PO nocte (specialist, not PBS-listed for RLS) |
| Dyspnoea | 30–50% | Frusemide 80–250 mg PO/IV daily; fluid restriction; fan therapy; positioning | Low-dose morphine 2.5–5 mg PO BD (only if no alternative; monitor closely for toxicity); midazolam 2.5 mg SC PRN for refractory dyspnoea |
| Cognitive Impairment / "Brain Fog" | 30–50% | Treat contributing factors (uraemia, medications, infection, electrolyte disturbance); simple environmental strategies | Review all CNS-active medications; consider dialysis initiation if reversible component suspected and aligns with goals |
| Pain | 40–60% | Paracetamol 1 g PO QDS (no renal adjustment); topical NSAIDs; simple measures | Hydromorphone 0.5–1 mg PO/SC Q4H; gabapentin for neuropathic pain; avoid morphine and codeine |
Symptom Assessment Tools
- IPOS-Renal — Integrated Palliative care Outcome Scale adapted for renal patients. Covers physical symptoms, psychological concerns, and information needs. Free to use. Recommended for use at each clinic visit in CKC.
- POS-S Renal — Palliative Outcome Score — Symptoms — Renal. Short symptom severity tool. Validated in the Australian CKD population.
- Edmonton Symptom Assessment System — Revised (ESAS-r) — Widely used in palliative care; can be applied to CKD populations. Nine symptoms scored 0–10.
Medication Adjustment in Advanced CKD
Medication management in advanced CKD (stages 4–5, eGFR <30 mL/min/1.73 m²) and particularly in CKC or post-dialysis withdrawal requires careful review. Reduced renal clearance leads to drug and metabolite accumulation, increasing toxicity risk. A systematic deprescribing approach, combined with appropriate dose adjustment of essential medications, is a core skill in CKD palliative care.
Principles of Medication Adjustment
Drugs to Avoid or Use with Extreme Caution in CKD Stage 5 / CKC
| Drug / Class | Reason for Avoidance | Safer Alternative |
|---|---|---|
| Morphine | Active metabolite (M6G) accumulates → respiratory depression, excessive sedation, myoclonus | Hydromorphone 0.5 mg SC/PO Q4H; fentanyl 25 mcg SC Q1–2H |
| Codeine | Metabolised to morphine; unpredictable accumulation | Tramadol 25–50 mg PO BD (max, with monitoring) or hydromorphone |
| NSAIDs (oral) | Nephrotoxic, hyperkalaemia, GI bleeding, fluid retention | Paracetamol 1 g PO QDS; topical NSAIDs for localised pain |
| Metformin | Lactic acidosis risk; contraindicated eGFR <15 | Insulin (reduced doses); gliclazide 40–80 mg PO daily (short-acting sulfonylurea) |
| Gabapentin (unadjusted) | Accumulation → sedation, respiratory depression, falls | 100 mg PO after dialysis or on alternate days for eGFR <15 |
| Digoxin | Renally cleared; narrow therapeutic index | Reduce dose by 50%; monitor levels (target 0.5–0.8 mcg/L); or cease if no clear indication |
| Colchicine | Severe toxicity risk in renal impairment | Avoid; corticosteroids for acute gout flares |
| Pregabalin (unadjusted) | Accumulation in renal failure | 25 mg PO alternate nights for eGFR <15; monitor sedation |
Key Medication Adjustments in CKD Stage 5
Deprescribing Framework
When transitioning to CKC or palliative care, consider deprescribing the following categories systematically:
| Category | Action | Rationale |
|---|---|---|
| Statins | Cease | No benefit in limited life expectancy; polypharmacy burden |
| Bisphosphonates | Cease | Contraindicated in severe CKD; risk of adynamic bone disease |
| Potassium-sparing diuretics | Cease or monitor closely | Hyperkalaemia risk; consider loop diuretics instead |
| ACEi / ARBs | Cease if symptomatic hypotension or hyperkalaemia | May continue if BP and K⁺ allow; deprescribe if causing symptoms |
| Warfarin / DOACs | Review indication | Bleeding risk increases; deprescribe unless strong AF or VTE indication and patient wishes to continue |
| Oral diabetes agents | Simplify | Liberalise glycaemic targets (HbA1c <75 mmol/mol); avoid hypoglycaemia; switch to insulin if needed |
| Phosphate binders | Continue if symptomatic benefit | Pruritus and bone pain may improve; cease if no benefit |
Special Populations
Pregnancy
CKD in pregnancy is rare at stage 5; if it occurs, manage in a tertiary centre with nephrology and obstetric teams.
Many palliative medications are teratogenic or poorly studied: haloperidol, gabapentin, and benzodiazepines carry risk — discuss with maternal-fetal medicine.
Advance care planning must consider the fetus as a separate patient; ethical frameworks should guide decision-making.
Paediatrics
Paediatric CKD palliative care is uncommon but critically important when it arises (congenital renal dysplasia, posterior urethral valves).
Dosing is weight-based: hydromorphone 10–20 mcg/kg SC Q4H; midazolam 50–100 mcg/kg SC PRN.
Family-centred care; involve paediatric palliative care team (e.g., Bear Cottage, Very Special Kids). Sibling support is essential.
Elderly (>75 years)
The majority of CKC patients are aged >75. Frailty assessment (Clinical Frailty Scale) should guide treatment decisions.
Lower starting doses for all psychoactive medications. Haloperidol 0.25–0.5 mg SC/PO. Increased falls risk — review sedating agents.
Polypharmacy is the norm — conduct structured medication review at each visit. Engage aged care services and My Aged Care if applicable.
Renal Impairment
All patients in this article have advanced CKD — this is the defining population. Key principle: without dialysis, renally cleared drugs have NO clearance pathway.
Avoid morphine, codeine, gabapentin at standard doses, NSAIDs, and colchicine. Review every medication for renal clearance pathway.
Use AMH renal dosing guide. Clinical pharmacist involvement reduces adverse drug events by up to 40%.
Hepatic Impairment
Hepatorenal syndrome or concurrent liver disease complicates medication management. Many "renal-safe" opioids are hepatically metabolised.
In combined renal-hepatic failure, fentanyl and midazolam require dose reduction (start at 50% of usual dose). Haloperidol generally safe.
Avoid hepatotoxic drugs; monitor LFTs. Use Child-Pugh score to guide hepatic dose adjustments.
Immunocompromised
Transplant recipients returning to dialysis or CKC after graft failure have unique needs: immunosuppression withdrawal, infection risk, and malignancy surveillance.
Withdraw calcineurin inhibitors gradually. Prednisolone taper per transplant protocol. Monitor for rejection symptoms even in graft failure.
Increased infection risk — low threshold for empirical antibiotics. Consider CMV and BK virus reactivation.
Aboriginal and Torres Strait Islander Health Considerations
Aboriginal and Torres Strait Islander Australians experience a significantly disproportionate burden of kidney disease. ESKD incidence is approximately 6–8 times higher than in non-Indigenous Australians, with onset at a younger age (median age at ESKD diagnosis approximately 50 years vs 65 years). The burden is greatest in remote and very remote communities, particularly in the Northern Territory, Western Australia, and Far North Queensland. Diabetes is the primary driver, accounting for approximately 70% of Indigenous ESKD cases.
Palliative and supportive care for Aboriginal and Torres Strait Islander peoples with advanced CKD must be delivered in a culturally safe, trauma-informed, and community-centred manner. Historical distrust of the health system, experiences of racism, and the legacy of the Stolen Generations profoundly affect engagement with healthcare, including discussions around end-of-life care and dialysis decisions.
Key Considerations
Resources
- Kidney Health Australia — Culturally appropriate CKD patient resources and decision aids
- RHDAustralia (Remote Area Health Corps) — Clinical guidelines for remote Aboriginal health
- Palliative Care Australia — National Palliative Care Strategy with specific ATSI action plan
- CRANAplus — Remote health workforce support and clinical resources
- Aboriginal and Torres Strait Islander Kidney Health Strategy — Kidney Health Australia framework
📚 References
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