Principles of Symptom Management

Symptom management is the cornerstone of palliative care. It applies across all diagnoses, all settings — hospital, hospice, residential aged care, and the community — and at all stages of a life-limiting illness. The World Health Organization (WHO) defines palliative care as "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual."

In Australia, approximately 160,000 people die each year (Australian Bureau of Statistics, 2023). The Australian Institute of Health and Welfare (AIHW) estimates that around 70–80% of those who die could benefit from some form of palliative care, yet only 30–40% currently receive specialist palliative care services. The majority of palliative symptom management is delivered by general practitioners, generalist hospital teams, and aged-care staff, underscoring the need for accessible, evidence-based guidance on core symptom management principles.

The most commonly reported symptoms in Australian palliative care populations, as captured by the Palliative Care Outcomes Collaboration (PCOC) national dataset, include:

• Pain — reported by 60–80% of patients at initial assessment
• Fatigue / lethargy — 50–70%
• Anorexia / reduced appetite — 40–60%
• Dyspnoea — 30–60% (higher in lung and heart failure populations)
• Nausea and vomiting — 20–40%
• Constipation — 30–50% (higher with opioid use)
• Insomnia / sleep disturbance — 20–45%
• Anxiety and depression — 20–50%
• Delirium / confusion — 20–40% (higher in the last days of life)

This topic provides a framework for approaching any symptom encountered in palliative care. Disease-specific symptom management (e.g., malignant bowel obstruction, superior vena cava obstruction, spinal cord compression) is covered in separate disease-specific articles. The principles outlined here are universal and apply irrespective of the underlying diagnosis.

Effective symptom management begins with thorough, systematic, and repeated assessment. In palliative care, symptom assessment must go beyond a biomedical checklist to encompass the psychological, social, cultural, and spiritual dimensions of suffering — Dame Cicely Saunders' concept of "total pain."

Principles of Assessment

• Systematic: Use a structured approach (see validated tools below) to ensure no domain is missed. Do not rely solely on spontaneous patient reporting — many patients under-report symptoms, particularly psychological distress.
• Patient-centred: The patient is the expert on their own symptoms. Use open-ended questions before closed ones. Allow the patient to prioritise which symptoms are most distressing.
• Regular and repeated: Symptoms in palliative care are dynamic. A symptom that was absent on Monday may be severe by Wednesday. Assess at every clinical contact.
• Multi-dimensional: Assess intensity, character, location, timing, aggravating and relieving factors, functional impact, emotional impact, and meaning to the patient.
• Inclusive of carer perspectives: Family members and carers often identify symptoms that patients have not reported, particularly cognitive or behavioural changes.
• Culturally sensitive: Some patients, particularly Aboriginal and Torres Strait Islander peoples and those from culturally and linguistically diverse (CALD) backgrounds, may express or interpret symptoms differently. Use culturally appropriate assessment tools and interpreters where needed.

Validated Assessment Tools

The following tools are commonly used in Australian palliative care settings and are endorsed by the Palliative Care Outcomes Collaboration (PCOC):

The Comprehensive Assessment Framework

For any symptom, the assessment should capture the following dimensions:

Differential Diagnosis of Symptom Cause

In palliative care, symptoms may arise from multiple concurrent causes. A useful framework is the ICE mnemonic:

• I — Iatrogenic / Induced by treatment: Opioid-induced constipation, chemotherapy-induced nausea, corticosteroid myopathy, radiation-induced mucositis.
• C — Concurrent comorbidity: Osteoarthritis contributing to pain, pre-existing COPD contributing to dyspnoea, diabetic neuropathy.
• E — Disease-related: Tumour causing obstruction, bone metastases causing pain, liver metastases causing anorexia, brain metastases causing headache.

Identifying the cause of a symptom directs treatment. For example, dyspnoe due to a pleural effusion (disease-related) may be best managed with thoracocentesis, while dyspnoe from anxiety (psychological) responds to counselling and anxiolytics.

Following comprehensive assessment, an individualised management plan should be developed collaboratively with the patient, their family/carer(s), and the multidisciplinary team. The plan must reflect the patient's goals of care, values, preferences, prognosis, and functional status.

Core Principles of the Management Plan

• Individualised: No two patients will have the same symptom profile, priorities, or response to treatment. Avoid a "one-size-fits-all" approach.
• Goal-directed: The plan must align with the patient's stated goals. A patient who wishes to attend a family wedding in two weeks has different priorities than one who wishes to be comfortable at home in their final days.
• Multimodal: Combine pharmacological, non-pharmacological, interventional, and supportive strategies for optimal effect.
• Proportionate: The intensity of investigation and treatment should match the clinical situation. Avoid unnecessary burden near end of life.
• Documented and communicated: The management plan must be documented in the medical record (ideally in the patient's advance care plan or goals-of-care documentation) and communicated to all members of the care team, including after-hours and emergency services.
• Anticipatory: Anticipate likely symptom progression and pre-emptively prescribe "as needed" (PRN) medications, particularly for pain, nausea, dyspnoe, agitation, and excessive secretions. This is especially critical in community palliative care where access to medical review may be delayed.

Multimodal Treatment Approach

Effective symptom management in palliative care rarely relies on a single intervention. A multimodal approach improves efficacy, reduces side effects, and allows lower doses of individual agents.

Anticipatory Prescribing

Anticipatory prescribing is a critical safety strategy in palliative care. The Palliative Care Australia consensus guidelines and the Australian & New Zealand Society of Palliative Medicine (ANZSPM) recommend that patients with an expected death within days to weeks have a "just in case" or anticipatory medication kit available, particularly in community settings.

The Role of the Multidisciplinary Team

Symptom management is a team endeavour. The palliative care multidisciplinary team (MDT) in Australia typically includes:

• General Practitioner: Often the primary coordinator of community palliative care; manages ongoing prescriptions, home visits, and liaison with specialist services.
• Palliative Care Specialist / Consultant: Provides expert advice on complex symptom management, medication titration, and end-of-life care planning.
• Palliative Care Nurse / Nurse Practitioner: Conducts symptom assessments, provides patient and carer education, manages subcutaneous infusions, and coordinates care across settings.
• Pharmacist: Reviews medications for appropriateness, identifies drug interactions, advises on compounding and alternative routes (subcutaneous, transdermal, sublingual, rectal, intranasal).
• Physiotherapist & Occupational Therapist: Maintain function, manage breathlessness (positions, fan therapy), prescribe mobility aids, and modify the home environment.
• Psychologist / Psychiatrist: Manage depression, anxiety, delirium, and existential distress; provide counselling for patients and carers.
• Social Worker: Address practical concerns (financial, legal, accommodation), facilitate family meetings, and support carer wellbeing.
• Chaplain / Spiritual Care Practitioner: Provide spiritual support, facilitate cultural practices, and assist with existential questions.
• Aboriginal and Torres Strait Islander Health Worker / Practitioner: Essential for culturally safe care, liaison with communities, and addressing the unique needs of Indigenous Australians.
• Speech Pathologist: Manage dysphagia, communication difficulties, and alternative feeding strategies.
• Dietitian: Advise on nutritional support, manage anorexia/cachexia, and address artificial nutrition decisions.

Routes of Administration

As disease progresses, the oral route may become unavailable. Australian palliative care practice emphasises familiarity with alternative routes:

Goals-of-Care Documentation

The management plan should be documented within a Goals-of-Care (GoC) or Advance Care Plan (ACP). In Australian hospitals, the National Safety and Quality Health Service (NSQHS) Standards require documentation of the patient's treatment plan, including any limitations on treatment. The Respecting Patient Choices program (Austin Health) and Advance Care Planning Australia (ACPA) provide national frameworks and templates.

Treatment burden — the workload of healthcare imposed on patients and their families — is a critical and often under-recognised consideration in palliative care. As disease progresses and prognosis shortens, the balance between benefit and burden of ongoing investigations, treatments, and hospital attendances shifts. Clinicians must continuously evaluate whether interventions are proportionate to the patient's goals and clinical trajectory.

Components of Treatment Burden

• Medication burden (polypharmacy): Multiple medications with overlapping side effects, complex dosing schedules, and drug-drug interactions. In Australian palliative care populations, the average patient takes 8–12 medications. Deprescribing — the planned and supervised process of dose reduction or stopping of medication that might be causing harm or is no longer of benefit — is an essential skill.
• Investigation burden: Blood tests, imaging, endoscopy, and biopsies may be distressing, painful, or logistically difficult, especially for patients receiving home-based care. Each investigation should be justified by the question: "Will the result change management?"
• Hospital attendance burden: Travel to and from hospital for appointments, chemotherapy, radiotherapy, or infusions may be exhausting for frail patients and disruptive for families. Consider telehealth (Medicare Benefits Schedule telehealth items, expanded since COVID-19), home-based services, and local palliative care teams.
• Procedural burden: Intravenous cannulation, central line maintenance, urinary catheters, nasogastric tubes, wound dressings — each carries discomfort and infection risk. Regularly review whether ongoing procedures are necessary.
• Financial burden: Out-of-pocket costs for medications (even PBS-listed agents have co-payments), equipment, home modifications, and transport. Centrelink Carer Allowance, the National Disability Insurance Scheme (NDIS — for eligible patients under 65), and state-based palliative care funding may provide assistance.
• Carer burden: The physical, emotional, and financial impact on family carers is substantial. Australian data show that carers of palliative patients have significantly higher rates of depression, anxiety, and physical health problems than the general population. Respite care (inpatient, day respite, or in-home respite) should be offered proactively.

Deprescribing in Palliative Care

The Deprescribing Guidelines from the Australian Deprescribing Network and the NPS MedicineWise program recommend reviewing all medications against the patient's current goals of care. Medications to consider stopping or reducing include:

Shared Decision-Making

Decisions about continuing or stopping treatments should be made collaboratively with the patient (where capacity permits) and their family. The Australian Commission on Safety and Quality in Health Care (ACSQHC) endorses shared decision-making as a core component of patient-centred care. Use plain language, explain risks and benefits, explore patient values, and document the discussion.

Useful framing questions include:

• "What is most important to you right now?"
• "How much of your day is spent managing your medications and attending appointments?"
• "Are there any treatments or tests that are causing you more distress than benefit?"
• "If we could reduce the number of tablets you take, would that be helpful?"

Palliative care is inherently dynamic. Symptoms change — often rapidly — in response to disease progression, treatment effects, psychological state, and social circumstances. Regular, structured review and reassessment are essential to ensure the management plan remains aligned with the patient's evolving needs and goals.

Frequency of Review

What to Review

At each review, systematically assess:

The Role of PCOC in Quality Improvement

The Palliative Care Outcomes Collaboration (PCOC) is Australia's national palliative care outcomes benchmarking program, funded by the Australian Government Department of Health. PCOC collects standardised assessment data (including the Symptom Assessment Scale, Palliative Care Problem Severity Score, Phase of Illness, and Australia-modified Karnofsky Performance Status) from participating services to enable quality improvement and outcome measurement.

All Australian specialist palliative care services are encouraged to participate in PCOC. PCOC data demonstrate that regular reassessment (i.e., at least two completed assessment episodes per phase of illness) is associated with better symptom outcomes, supporting the principle that structured, repeated review improves care.

Escalation Criteria

Clinicians should have clear escalation pathways for when symptoms are not responding to standard management:

Communication at Transitions of Care

Effective symptom management requires seamless communication at transitions between care settings (hospital to home, hospital to hospice, acute care to residential aged care). The National Safety and Quality Health Service (NSQHS) Clinical Handover Standard requires structured communication (e.g., ISBAR — Identify, Situation, Background, Assessment, Recommendation) at every transition. Ensure the receiving team has the current symptom management plan, anticipatory medications prescribed, and advance care plan documentation available.

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