📋 Key Information Summary
- Cachexia is a multifactorial syndrome of involuntary weight loss, muscle wasting, and systemic inflammation occurring in 50–80% of advanced cancer and end-stage organ failure patients; it is distinct from simple starvation and is largely irreversible in the terminal phase.
- Anorexia (loss of appetite) is nearly universal in advanced illness and is driven by cytokine-mediated appetite suppression, altered taste, medication side effects, nausea, constipation, depression, and disease burden — not simply "not wanting to eat."
- The primary goal of management is comfort and quality of life, not restoration of nutritional status; forced feeding in cachexia causes distress without meaningful benefit.
- Assess the underlying reversible contributors first: constipation, nausea, oral candidiasis, depression, medication side effects (opioids, chemotherapy), dysphagia, and pain.
- Pharmacological appetite stimulation with megestrol acetate (200–800 mg/day PO) or dexamethasone (4–8 mg/day PO, short-term) may modestly improve appetite but does not reverse cachexia or prolong survival.
- Small, frequent, energy-dense meals and favourite foods are preferred; respecting the patient's right to decline food is a core ethical principle in palliative care.
- Family distress about eating is extremely common; structured communication using the "food as love" framework and clear education about cachexia physiology reduces guilt and conflict.
- Artificial nutrition (enteral tube feeding, parenteral nutrition) has no proven survival or quality-of-life benefit in end-stage cachexia and should generally be avoided unless a clearly reversible cause of dysphagia exists (e.g., post-operative obstruction relief).
- Parenteral hydration in the dying patient is controversial; routine IV fluids are not recommended; small sips for comfort and meticulous mouth care are the standard of care.
- Weight loss ≥5% over 6 months (or BMI <20 kg/m²) in the context of advanced disease should prompt formal cachexia assessment using validated tools such as the Glasgow Prognostic Score (GPS) or Edmonton Symptom Assessment System (ESAS).
- Aboriginal and Torres Strait Islander patients may have additional barriers including cultural significance of food sharing, remoteness from palliative care services, and distrust of hospital-based care; culturally safe, community-based approaches are essential.
- Document goals of care clearly, including the patient's wishes regarding artificial nutrition and hydration, in an Advance Care Plan (ACP) consistent with state legislation.
Introduction & Australian Epidemiology
Anorexia, involuntary weight loss, and cachexia are among the most distressing and visible manifestations of advanced illness. They affect patients with cancer, end-stage organ failure (cardiac, renal, respiratory, hepatic), neurological conditions, HIV/AIDS, and frailty of ageing. These phenomena are a major source of suffering — not only for the patient who may experience fatigue, weakness, and loss of identity, but also for families and carers who equate eating with living and perceive nutritional decline as a sign of giving up.
In Australian palliative care practice, an estimated 50–80% of patients with advanced cancer experience cancer cachexia syndrome, and up to 30–40% of cancer deaths are directly attributable to cachexia rather than tumour burden alone. In end-stage heart failure, cardiac cachexia (defined as non-oedematous weight loss ≥5% over 12 months) affects 15–30% of patients with severe chronic heart failure and confers a median survival of less than 12 months. In advanced chronic obstructive pulmonary disease (COPD), low body weight and muscle wasting are independent predictors of mortality.
The Australian Institute of Health and Welfare (AIHW) reports that in 2022, over 70,000 Australians received specialist palliative care, with symptom management — including appetite and nutritional concerns — among the top reasons for referral. The Palliative Care Outcomes Collaboration (PCOC) routinely collects data on symptom burden including anorexia as a domain of the Symptom Assessment Scale (SAS).
This topic addresses the recognition, assessment, and management of anorexia, weight loss, and cachexia within the Australian palliative care context. It covers the cachexia syndrome itself, practical approaches to appetite and intake, communication with families about eating, and decision-making around artificial nutrition and hydration — always centred on the patient's goals, comfort, and dignity.
Key clinical distinction: Cachexia is not simple starvation. It is driven by tumour- or disease-derived inflammatory cytokines (TNF-α, IL-1, IL-6) that cause catabolism of muscle and fat independent of caloric intake. Feeding a cachectic patient more calories will not reverse the process. This message is critical for families.
Cachexia Syndrome
Definition and Diagnostic Criteria
Cachexia (from Greek kakos — bad; hexis — condition) is a complex metabolic syndrome characterised by ongoing loss of skeletal muscle mass (with or without fat mass loss) that cannot be fully reversed by conventional nutritional support. The international consensus definition (Fearon et al., 2011) requires:
- Weight loss >5% in the past 6 months (in the absence of simple starvation); or
- BMI <20 kg/m² plus any degree of weight loss >2%; or
- Sarcopenia (appendicular skeletal muscle index consistent with muscle wasting on CT or DXA) plus any degree of weight loss >2%.
In the palliative care setting, formal body composition analysis (CT cross-sectional imaging, bioelectrical impedance analysis) is rarely required for diagnosis. Clinical assessment — observation, history, and serial weight measurement — is sufficient in most cases.
Classification of Nutritional Decline in Advanced Disease
| Category | Mechanism | Reversibility | Approach |
|---|---|---|---|
| Simple starvation / anorexia | Reduced oral intake due to reversible causes (depression, nausea, oral thrush, pain, constipation) | Potentially reversible | Identify and treat cause; nutritional supplementation may help |
| Sarcopenia of ageing | Age-related loss of muscle mass and function, accelerated by inactivity | Partially modifiable | Protein supplementation, resistance exercise if feasible |
| Starvation-related malnutrition | Prolonged inadequate intake without significant inflammation | Reversible with refeeding | Graduated nutritional rehabilitation (monitor for refeeding syndrome) |
| Chronic disease-related malnutrition | Mild-to-moderate inflammation with reduced intake (e.g., stable COPD, CKD stage 3–4) | Partially reversible | Treat underlying disease; oral nutritional supplements (ONS); dietitian input |
| Cachexia | Profound systemic inflammation driving catabolism (cancer, end-stage organ failure) | Largely irreversible in terminal phase | Comfort-focused care; manage symptoms; family support |
Pathophysiology
Cachexia is driven by a cascade of pro-inflammatory cytokines (TNF-α, IL-1, IL-6, IFN-γ) and catabolic mediators (proteolysis-inducing factor, lipid-mobilising factor) released by the tumour or activated immune system. Key pathophysiological features include:
- Skeletal muscle proteolysis: Activation of the ubiquitin–proteasome pathway and autophagy lead to accelerated breakdown of myofibrillar proteins (actin, myosin).
- Lipolysis: Hormone-sensitive lipase activation and reduced lipoprotein lipase activity cause preferential loss of adipose tissue.
- Anabolic resistance: Impaired mTOR signalling means that even adequate protein and calorie delivery cannot stimulate muscle protein synthesis.
- Neuroendocrine changes: Elevated cortisol, insulin resistance, reduced IGF-1, and disrupted ghrelin/leptin signalling contribute to anorexia and catabolism.
- Acute-phase protein response: The liver shifts protein synthesis from albumin to C-reactive protein (CRP) and other acute-phase reactants, producing the characteristic hypoalbuminaemia of cachexia.
Refeeding syndrome risk: If a severely malnourished or cachectic patient is refed (orally or via tube) after a period of prolonged low intake, life-threatening hypophosphataemia, hypokalaemia, and hypomagnesaemia can occur within 24–72 hours. Always check serum phosphate, potassium, magnesium, and glucose before commencing nutritional support in malnourished patients. Thiamine 100–300 mg IV should be given before refeeding commences.
Disease-Specific Cachexia Prevalence
| Condition | Prevalence of Cachexia | Prognostic Implication |
|---|---|---|
| Pancreatic cancer | 80–90% | Median survival <3 months once cachexia established |
| Upper GI cancers (gastric, oesophageal) | 60–80% | Weight loss >10% body weight is independent prognostic factor |
| Lung cancer | 50–70% | Cachexia present in majority at diagnosis of advanced disease |
| Colorectal cancer | 30–50% | Less common than upper GI but significant at advanced stage |
| Chronic heart failure (NYHA III–IV) | 15–30% | Cardiac cachexia: 50% 1-year mortality |
| COPD (GOLD stage III–IV) | 20–40% | Low BMI independent predictor of mortality |
| End-stage renal disease (dialysis) | 30–50% | Protein-energy wasting doubles mortality risk |
| Advanced dementia | 40–60% | Dysphagia and anorexia near-universal in final stage |
Appetite & Intake
Assessment of Appetite and Nutritional Status
A structured assessment should identify both the reversible contributors to poor appetite and the patient's own goals regarding eating. The following domains should be explored:
- Appetite self-report: Use a validated tool such as the Edmonton Symptom Assessment System (ESAS) or the Anorexia/Cachexia Subscale (A/CS) of the Functional Assessment of Anorexia/Cachexia Therapy (FAACT). A visual analogue scale (0–10) is acceptable in clinical practice.
- Oral assessment: Inspect for oral candidiasis, mucositis, xerostomia (dry mouth from opioids, anticholinergics, radiotherapy), dental problems, and ill-fitting dentures.
- GI symptoms: Nausea, vomiting, early satiety, dysphagia, odynophagia, constipation, diarrhoea, abdominal pain, ascites.
- Medication review: Opioids (constipation, nausea, taste disturbance), chemotherapy (mucositis, nausea), corticosteroids (proximal myopathy despite appetite stimulation), anticholinergics (dry mouth), digoxin (anorexia), SSRIs (appetite suppression).
- Psychosocial: Depression, anxiety, isolation, loss of the social role of eating, cultural or religious food practices.
- Functional status: Ability to feed self, access to kitchen or carer who can prepare food, availability of Meals on Wheels or community support.
- Patient's wishes: "What does eating mean to you?" "Would you like to try some strategies to help with your appetite, or are you comfortable eating less?"
Reversible Causes to Address First
| Cause | Intervention |
|---|---|
| Oral candidiasis | Nystatin suspension 1 mL (100,000 units) QID swish and swallow; or fluconazole 50 mg PO daily for 7 days |
| Nausea/vomiting | Ondansetron 4–8 mg PO/IV BD–TDS; metoclopramide 10 mg PO/SC TDS (avoid if bowel obstruction); haloperidol 0.5–1 mg PO/SC nocte |
| Constipation | Osmotic laxatives (macrogol 3350); senna; docusate + senna combination; rectal interventions if needed |
| Dry mouth (xerostomia) | Frequent mouth care, artificial saliva (Biotène®), ice chips, review anticholinergic medications |
| Depression | Psychosocial support; consider mirtazapine 15 mg PO nocte (dual benefit: antidepressant + appetite stimulation); or dexamethasone for short-term appetite boost |
| Pain | Adequate analgesia per WHO analgesic ladder; ensure pain is not suppressing appetite |
| Opioid-induced nausea | Opioid rotation; haloperidol 0.5–1 mg PO/SC; ensure adequate bowel regimen |
| Medication side effects | Deprescribing review; consult palliative care pharmacist |
Pharmacological Appetite Stimulation
Pharmacological agents may improve appetite and modestly increase weight, but none have been shown to reverse cachexia or improve survival. They should be trialled with clear time-limited goals (2–4 weeks) and discontinued if no benefit.
Megestrol Acetate
Megace® · Progestational appetite stimulant
Adult dose
400–800 mg PO daily (oral suspension); start 400 mg daily, titrate to effect over 1–2 weeks
Paediatric dose
Limited data; 10 mg/kg/day PO if used in paediatric palliative care under specialist guidance
Route
Oral (suspension preferred for absorption)
Duration
Trial for 2–4 weeks; continue only if meaningful improvement in appetite or weight
Renal adjustment
None required
Hepatic adjustment
Use with caution; monitor for hepatotoxicity
Key side effects
Thromboembolism (DVT/PE risk), adrenal suppression, hyperglycaemia, peripheral oedema, vaginal bleeding
PBS status
✔ PBS General Benefit
Dexamethasone
Decadron® · Corticosteroid appetite stimulant
Adult dose
4–8 mg PO/IV morning daily (short-term, typically ≤2 weeks)
Paediatric dose
0.1–0.3 mg/kg/day PO (max 8 mg) under specialist guidance
Route
Oral, IV, SC
Duration
1–2 weeks trial; effect often wanes; taper if stopping after >7 days
Key side effects
Hyperglycaemia, myopathy (paradoxically worsens muscle wasting with prolonged use), insomnia, mood changes, GI bleeding, immunosuppression
PBS status
✔ PBS General Benefit
Mirtazapine
Avanza® · Noradrenergic and specific serotonergic antidepressant (NaSSA)
Adult dose
15 mg PO nocte (increase to 30 mg if tolerated and needed for depression; 15 mg may be optimal for appetite effect via H₁ antagonism)
Paediatric dose
Not routinely used in paediatric palliative care for this indication
Route
Oral (orodispersible tablets available)
Duration
Ongoing if benefiting mood and/or appetite; review at 4 weeks
Key side effects
Sedation (may be beneficial for insomnia), weight gain (desired effect), dry mouth, rare agranulocytosis
PBS status
✔ PBS General Benefit
Olanzapine
Zyprexa® · Atypical antipsychotic with appetite-stimulating properties
Adult dose
2.5–5 mg PO nocte (lower doses than psychiatric use); emerging evidence supports use in cancer anorexia-cachexia
Key side effects
Sedation, metabolic syndrome, weight gain, extrapyramidal symptoms (rare at low dose)
PBS status
⚠️ PBS Authority Required (for schizophrenia/bipolar; off-label for appetite — not PBS-listed for this indication)
Non-Pharmacological Strategies
- Small, frequent meals: 5–6 small meals/snacks per day rather than 3 large meals; energy-dense foods (cheese, avocado, nuts, cream, butter, full-fat yoghurt, eggs).
- Favourite foods: Prioritise the patient's preferences, cravings, and cultural food traditions — even if nutritionally "suboptimal." A few bites of a loved food is better than a full plate of unwanted hospital food.
- Oral nutritional supplements (ONS): Sip feeds such as Ensure®, Fortisip®, or Resource® (200 mL, 300 kcal) may be trialled if the patient is willing; evidence of benefit in cachexia is limited, but they are low-risk. ⚠️ Not PBS-listed for palliative care use — available OTC or via hospital/community dietitian supply.
- Texture modification: If dysphagia is present, speech pathology assessment for modified diet textures and fluid thickness per the International Dysphagia Diet Standardisation Initiative (IDDSI) framework.
- Mealtime environment: Reduce nausea triggers (cooking smells if bothersome), eat with others if social eating is valued, use attractive crockery, ensure comfortable positioning (upright at 45–90°).
- Dietitian referral: Refer to a palliative care-experienced dietitian for individualised advice. In Australia, dietitian services may be accessed under Medicare via a Chronic Disease Management (CDM) plan (up to 5 allied health sessions per calendar year, MBS Item 10954).
- Complementary approaches: Ginger (for nausea), omega-3 fatty acids (limited evidence for cachexia), and aromatherapy may provide modest symptomatic benefit. Evidence for cannabis-based appetite stimulation (dronabinol, nabiximols) in palliative cachexia is limited and access in Australia is via Special Access Scheme (SAS) or Authorised Prescriber pathway through the TGA.
Dietitian referral tip: Under the Medicare CDM Allied Health items (MBS 10950–10970), patients with a chronic condition and GP Management Plan can access up to 5 individual allied health services per calendar year. For Aboriginal and Torres Strait Islander patients, an additional 5 services may be available through the Closing the Gap PBS Co-payment Program and Indigenous-specific health assessments (MBS 715).
Family Concerns
Why Families Are Distressed About Eating
For families, food is love. Preparing meals, offering food, and watching a loved one eat are fundamental expressions of care across all cultures. When a patient stops eating, families frequently experience:
- Guilt: "I should be able to make them eat more." "Maybe I'm not cooking the right things."
- Fear: "Are they starving to death?" "Will they die from not eating?" "Are they in pain from hunger?"
- Anger/frustration: "Why won't they just try?" "The hospital isn't feeding them properly."
- Grief: Loss of the shared meal — a symbol of family life and normalcy.
- Cultural obligation: In many cultures, not offering food is a failure of hospitality and love.
Communication Frameworks
Effective communication about anorexia and cachexia is one of the most important skills in palliative care. The following frameworks are recommended:
1
Acknowledge the distress
"I can see how much it matters to you that Mum is eating. It's really hard to watch someone you love not want food."
2
Explain the physiology
"As the illness progresses, the body's chemistry changes. The brain stops sending hunger signals, and even food that was once enjoyed can taste different or unappetising. This is part of the illness — not a choice."
3
Reassure about comfort
"Importantly, people in this stage of illness are usually not hungry in the way you or I would feel hungry. They are not suffering from hunger. We will ensure their mouth is comfortable and they can have sips of anything they enjoy."
4
Reframe the role of food
"You can still offer food — a favourite treat, a taste of something they love. Even a small amount can be a lovely shared moment. But please don't feel you need to force them to eat. It may cause more distress than comfort."
5
Redirect care energy
"There are many ways you can care for them now: mouth care, lip balm, a cool cloth on the forehead, holding their hand, playing their favourite music, reading to them. These are all acts of love."
Common Family Questions and Evidence-Based Responses
| Family Question | Recommended Response |
|---|---|
| "Are they starving to death?" | "No. The body is shutting down as part of the dying process. The metabolism changes completely. There is no sensation of painful hunger. Forcing food would not help and may cause nausea or aspiration." |
| "Can we put in a feeding tube?" | "A feeding tube in this situation would not improve comfort or extend life meaningfully, and it can cause complications like aspiration, infection, and distress. Our focus is on keeping them comfortable." |
| "Can we give them IV fluids?" | "IV fluids in the final days can actually cause discomfort — fluid overload, swelling, breathlessness, and increased secretions. Small sips for comfort and good mouth care are the best approach." |
| "Should we try a nasogastric tube?" | "In advanced illness, tube feeding does not improve outcomes and can cause discomfort, nasal irritation, and aspiration. If there is a specific reversible cause for the swallowing difficulty, we can discuss that." |
| "They only want ice cream — is that okay?" | "Absolutely. At this stage, whatever they enjoy is the right food. Ice cream provides calories, fluid, and comfort. Please offer it freely." |
When to Involve Specialist Palliative Care
- Family conflict regarding artificial nutrition and hydration decisions.
- Patient or family requesting interventions the clinical team considers non-beneficial or harmful.
- Severe anticipatory grief related to nutritional decline.
- Cultural or religious requirements around food and dying that need specialist navigation.
- Carer burnout related to food preparation demands.
Artificial Nutrition Decisions
Overview
Decisions about artificial nutrition and hydration (ANH) in advanced illness are among the most ethically complex in medicine. They involve the intersection of medical evidence, patient autonomy, family expectations, cultural values, and legal frameworks. Australian palliative care consensus supports a cautious, patient-centred approach that prioritises comfort and avoids burdensome interventions in the dying process.
When Artificial Nutrition May Be Considered
May Consider
Reversible Cause Identified
Short-term enteral nutrition may be appropriate when dysphagia or obstruction has a reversible cause (e.g., post-surgical oedema, radiotherapy-induced mucositis expected to resolve in 2–4 weeks, benign stricture amenable to stenting).
Setting: Specialist palliative care / surgical unit discussion
Unlikely to Benefit
Cachexia of Advanced Cancer
Tube feeding in cancer cachexia has not been shown to improve survival, quality of life, or functional status. Parenteral nutrition in advanced cancer is associated with significant complications (line sepsis, metabolic derangement) with minimal benefit. Generally not recommended.
Setting: Outpatient palliative care, goals-of-care discussion
Not Recommended
Active Dying / Terminal Phase
In the last days of life, ANH is considered futile and potentially harmful. IV fluids cause peripheral oedema, pulmonary congestion, and increased respiratory secretions. NG tubes cause discomfort and agitation. Comfort care with mouth care and small sips is the standard.
Setting: Inpatient palliative care, home hospice
Enteral Nutrition (Tube Feeding)
| Method | Indication in Palliative Care | Considerations |
|---|---|---|
| Nasogastric (NG) tube | Short-term only (days to 1–2 weeks); reversible dysphagia | Uncomfortable; high self-removal rate; nasal erosion; aspiration risk; not appropriate for patients with reduced consciousness or agitation |
| Percutaneous endoscopic gastrostomy (PEG) | Rarely indicated in palliative care; may be considered in selected head-and-neck cancer patients undergoing curative chemoradiotherapy with expected recovery | Procedural risks (perforation, wound infection, aspiration); requires general health sufficient for endoscopy; not appropriate in cachexia |
| Percutaneous endoscopic jejunostomy (PEJ) | Gastric outlet obstruction where bypass is desired; extremely rare in palliative context | As for PEG; higher procedural complexity |
Parenteral Nutrition
Total parenteral nutrition (TPN) in advanced cancer and end-stage organ failure is associated with significant complications — catheter-related bloodstream infections (CRBSI), metabolic derangements (hyperglycaemia, refeeding syndrome, liver dysfunction), fluid overload, and thrombosis — without proven survival or quality-of-life benefit. TPN should generally not be commenced in patients with a life expectancy of less than 2–3 months. Exceptions may include patients with bowel obstruction from a benign or surgically correctable cause undergoing active treatment.
Clinical practice point: The American Society for Parenteral and Enteral Nutrition (ASPEN) and the European Society for Clinical Nutrition and Metabolism (ESPEN) both recommend against routine use of parenteral nutrition in patients with advanced cancer and a life expectancy of <2–3 months. Australian palliative care guidelines (Palliative Care Australia, 2023) align with this position. If parenteral nutrition is being considered, a formal ethics consultation or second specialist opinion is recommended.
Hydration in the Dying Patient
The question of whether to provide subcutaneous or intravenous fluids in the last days of life is one of the most common sources of family conflict. Key evidence and guidance:
- A 2019 Cochrane review found insufficient evidence to recommend for or against parenteral hydration in the last days of life; no consistent effect on survival, delirium, or thirst was demonstrated.
- The natural dehydration of dying appears to produce endogenous opioids that may reduce distress and contribute to a peaceful death (the "dehydration euphoria" hypothesis).
- Excessive fluid administration can cause peripheral oedema, ascites, pulmonary congestion, increased bronchial secretions ("death rattle"), urinary incontinence, and the need for catheterisation — all sources of discomfort.
- Recommendation: Routine IV or SC fluids are not recommended in the dying phase. Offer small sips for comfort (ice chips, moistened swabs, lip balm). Meticulous oral care (mouth care every 1–2 hours) is essential. If fluids are given by family request, limit to 500–1000 mL/day SC and monitor for fluid overload.
Legal and Ethical Framework in Australia
Australian law recognises that artificial nutrition and hydration are medical treatments that can be refused or withdrawn by a competent patient, or by a substitute decision-maker acting in the patient's best interests. Key legal principles:
- Capacity: A patient with decision-making capacity has the legal right to refuse any treatment, including nutrition and hydration, even if refusal may lead to death.
- Advance Care Plans (ACP): Patients may document their wishes regarding artificial nutrition in an Advance Health Directive (AHD) or equivalent state-based instrument (e.g., Advance Care Directive in SA and Victoria; Advance Health Directive in QLD and WA; Enduring Guardian appointment in NSW).
- Substitute decision-makers: When a patient lacks capacity, the legally appointed substitute decision-maker (medical enduring power of attorney, guardian, or statutory next-of-kin hierarchy per state legislation) can make decisions about ANH based on the patient's known wishes and best interests.
- Withholding vs. withdrawing: Ethically and legally, there is no distinction between withholding and withdrawing artificial nutrition. If ANH is not in the patient's best interests, it may be commenced and subsequently withdrawn.
- Non-beneficial treatment: Clinicians are not obliged to provide treatment that they judge to be non-beneficial or harmful, but should engage in thorough communication with the family and seek ethics committee review if disagreement persists.
State-specific legislation: Advance care planning and substitute decision-making laws vary across Australian states and territories. Clinicians should be familiar with the relevant legislation in their jurisdiction. Resources: Advance Care Planning Australia (advancecareplanning.org.au) and the relevant state Public Trustee or Office of the Public Advocate.
Investigations
Investigations in the palliative care context should be targeted, minimally burdensome, and directed by clinical questions rather than routine screening. The guiding principle is: "Will this test change management?"
Baseline and Monitoring Investigations
Essential
Full blood count (FBC)
Assess for anaemia (contributing to fatigue/appetite), infection (neutrophilia), haematological malignancy. MBS Item 65060.
Essential
Serum albumin and total protein
Low albumin (<30 g/L) is a marker of cachexia severity and poor prognosis (component of Glasgow Prognostic Score). Not a marker of nutritional status in isolation.
Essential
C-reactive protein (CRP)
Elevated CRP (>10 mg/L) reflects systemic inflammation and, combined with albumin, forms the Glasgow Prognostic Score (GPS) — a validated prognostic tool in advanced cancer.
Available
Serum electrolytes, renal function (UEC)
Assess for dehydration, renal impairment, electrolyte derangement. Essential if commencing pharmacological appetite stimulants (megestrol → glucose; dexamethasone → glucose, potassium).
Available
Liver function tests (LFTs)
Hepatic metastases, drug hepatotoxicity (megestrol acetate), hepatic congestion in heart failure.
Available
Serum glucose (fasting or random)
Baseline before commencing corticosteroids or megestrol acetate. Monitor if diabetic or pre-diabetic.
Available
Thyroid function tests (TFTs)
Consider if weight loss is disproportionate to disease burden or if clinical features suggest thyrotoxicosis (rare in palliative setting but reversible).
Available
Serum phosphate, magnesium, potassium
Essential before commencing refeeding in malnourished patients (refeeding syndrome risk assessment).
Available
Vitamin B1, B12, folate, zinc
Consider in prolonged malnutrition; zinc deficiency impairs taste and appetite. Vitamin B1 (thiamine) is essential before refeeding.
Referral
CT imaging (chest/abdomen/pelvis)
Only if imaging will change management (e.g., assess for bowel obstruction amenable to stenting, disease response assessment). Not for routine cachexia monitoring.
Prognostic Scoring Tools
| Tool | Components | Prognostic Value |
|---|---|---|
| Glasgow Prognostic Score (GPS) | CRP (>10 mg/L = 1 point) + Albumin (<35 g/L = 1 point). Score 0, 1, or 2. | GPS 2: median survival ~3 months in advanced cancer. Validated across multiple tumour types. |
| Modified GPS (mGPS) | As GPS but albumin only scores if CRP is elevated. Score 0, 1, or 2. | Superior prognostic value in some cancer types compared to GPS. |
| Patient-Generated Subjective Global Assessment (PG-SGA) | Patient-reported weight change, food intake, symptoms, functional capacity + clinician physical assessment. | Validated nutritional assessment tool; categorises patients as well-nourished (A), moderately malnourished (B), or severely malnourished (C). |
| Edmonton Symptom Assessment System (ESAS) | 0–10 scale across 9 domains including appetite; validated for palliative care symptom monitoring. | Used in Australian PCOC data collection; tracks symptom burden over time. |
| Palliative Prognostic Score (PaP) | Clinical prediction of survival: dyspnoea, anorexia, Karnofsky PS, WBC, lymphocyte percentage, GPS. | Groups patients into 30-day survival probability: >70%, 30–70%, <30%. |
Monitoring
Monitoring in palliative care should be proportionate to the patient's goals, stage of illness, and treatment plan. The frequency and intensity of monitoring should decrease as the patient approaches the terminal phase.
Monitoring Domains
| Domain | Tool / Method | Frequency |
|---|---|---|
| Weight | Standing or wheelchair scale; bed scale if immobile | Weekly if stable; fortnightly if comfort-focused (avoid distressing frequent weigh-ins if patient/family distressed by numbers) |
| Appetite score | ESAS appetite item (0–10) or FAACT A/CS | Each clinical review; weekly in active symptom management |
| Oral intake | Clinical observation; food diary (if patient willing and helpful); dietitian assessment | Ongoing; formal dietitian review at baseline and as needed |
| Functional status | Karnofsky Performance Status (KPS) or Australia-modified Karnofsky Performance Status (AKPS); PCOC phase of care | Each clinical review |
| Symptom burden | ESAS, SAS (PCOC), POS (Palliative Care Outcome Scale) | Each clinical review; at least weekly in specialist palliative care |
| Side effects of appetite stimulants | Blood glucose (if on dexamethasone or megestrol); clinical DVT assessment; serum potassium | 1–2 weeks after commencing, then as clinically indicated |
| Family distress | Clinical conversation; Zarit Burden Interview if formal assessment needed | Each clinical review; more frequently if conflict identified |
PCOC integration: In Australian specialist palliative care services, symptom assessment via the Symptom Assessment Scale (SAS) and phase-of-care documentation are core PCOC data items. Anorexia is captured as part of the SAS. Services should ensure regular PCOC data collection to support benchmarking and quality improvement.
Special Populations
Pregnancy
Megestrol acetate
Contraindicated in pregnancy. Progestational agents are teratogenic. Do not use for appetite stimulation in pregnant patients.
Dexamethasone
Corticosteroids may be used in pregnancy when benefit outweighs risk (e.g., for fetal lung maturation). Use lowest effective dose for shortest duration. Appetite stimulation is rarely a primary indication in pregnancy.
Mirtazapine
Category B3. Use only if benefit clearly outweighs risk. Discuss with perinatal mental health team. Neonatal withdrawal effects possible with third-trimester use.
General
Palliative care in pregnancy is rare but requires multidisciplinary input (obstetrics, neonatology, palliative care, social work). Nutritional goals should consider fetal wellbeing alongside maternal comfort.
Paediatrics
General principles
Paediatric cachexia occurs in advanced malignancy (especially brain tumours, neuroblastoma), neuromuscular disorders (Duchenne muscular dystrophy), and metabolic diseases. Weight loss in children is particularly distressing for families and carries different prognostic implications than in adults.
Megestrol acetate
Limited paediatric data; 10 mg/kg/day if used under specialist guidance. Monitor for thromboembolism and adrenal suppression.
Artificial nutrition
The threshold for enteral tube feeding in paediatric palliative care is generally lower than in adults, as many children have a reversible component to their feeding difficulty and longer prognoses. NG feeding is common and often well-tolerated. PEG may be appropriate if feeding difficulty is expected to persist for weeks to months. Decisions must be family-centred and involve paediatric palliative care specialists.
Dietitian input
Essential in all paediatric palliative care cases involving nutritional decline. Paediatric dietitians should be involved early. Consider energy-dense paediatric feeds (PaediaSure®, Infatrini®) and cultural food preferences.
Elderly
Sarcopenia of ageing
Age-related sarcopenia is common and may coexist with cachexia. Distinguishing the two has management implications — sarcopenia may respond to protein supplementation (1.0–1.2 g/kg/day) and resistance exercise, whereas cachexia does not.
Megestrol acetate
Use with caution in elderly; increased thromboembolic risk. Ensure adequate VTE prophylaxis assessment.
Dexamethasone
Increased risk of hyperglycaemia, osteoporotic fractures, and delirium in the elderly. Use lowest dose (2–4 mg) and short duration.
Deprescribing
Polypharmacy is common in elderly palliative care patients. Review all medications for appetite-suppressing effects and discontinue non-essential medications. Use deprescribing tools (e.g., STOPP/START criteria, Scott's List).
Swallowing assessment
Dysphagia is common in elderly patients with neurological conditions (stroke, Parkinson's disease, dementia). Speech pathology assessment and IDDSI texture modification are essential to reduce aspiration risk.
Renal Impairment
Protein-energy wasting (PEW)
In end-stage renal disease (eKD), PEW affects 30–50% of dialysis patients and is strongly associated with mortality. Uraemic toxins suppress appetite; dialysis itself increases protein losses. KDIGO recommends 1.0–1.2 g/kg/day protein for haemodialysis patients.
Megestrol acetate
No renal dose adjustment required. Monitor potassium (risk of hyperkalaemia in CKD with reduced intake).
Dexamethasone
No renal dose adjustment. Monitor glucose (increased risk of steroid-induced hyperglycaemia in CKD). Increased risk of fluid retention.
Dialysis and nutrition
If a patient on dialysis transitions to a comfort-focused pathway and dialysis is ceased, nutritional decline accelerates. Appetite stimulants may be trialled but expectations should be realistic. Focus shifts to comfort and mouth care.
Hepatic Impairment
Sarcopenia in cirrhosis
Sarcopenia is present in 40–70% of patients with cirrhosis and is an independent predictor of mortality. Late-evening snack (LES) with branched-chain amino acids (BCAAs) may improve nitrogen balance.
Megestrol acetate
Use with caution in hepatic impairment; risk of hepatotoxicity. Monitor LFTs. Avoid in severe hepatic dysfunction (Child-Pugh C).
Dexamethasone
Metabolised hepatically; use with caution. May worsen fluid retention, ascites, and hepatic encephalopathy (via catabolism and nitrogen load).
Hepatic encephalopathy
Protein restriction is no longer recommended in hepatic encephalopathy. Aim for 1.2–1.5 g/kg/day protein. Lactulose and rifaximin for encephalopathy management may improve appetite by reducing nausea.
Immunocompromised
General
Immunocompromised patients (HIV/AIDS, post-transplant, chemotherapy-induced neutropenia, chronic corticosteroid use) may have additional causes of anorexia: opportunistic infections (oral candidiasis, oesophageal candidiasis, CMV), drug interactions, and malabsorption.
HIV/AIDS
HIV-associated wasting (now less common with ART) presents with weight loss >10%, chronic diarrhoea, and fever. Appetite stimulants (megestrol, dronabinol) have been studied. In Australia, access to dronabinol via TGA SAS pathway. Ensure ART adherence and treat opportunistic infections.
Megestrol acetate
Monitor for thromboembolism, particularly in patients with cancer who may already be at elevated VTE risk due to malignancy and reduced mobility.
Aboriginal and Torres Strait Islander Health
Aboriginal and Torres Strait Islander Australians experience a disproportionate burden of chronic disease, including cancers diagnosed at later stages, end-stage renal disease (particularly in remote communities), rheumatic heart disease, and diabetes-related complications — all of which can lead to cachexia and nutritional decline. Palliative care access and culturally appropriate end-of-life care remain significant gaps.
📚 References
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