Principles of Palliative Care
Palliative care is an approach that improves quality of life for patients and families facing life-threatening illness, through prevention and relief of suffering across physical, psychological, social, and spiritual dimensions.
Key Facts
WHO definition: palliative care improves quality of life of patients and families facing life-threatening illness, through prevention and relief of suffering Total pain concept (Dame Cicely Saunders): suffering has physical, psychological, social, and spiritual dimensions — all must be addressed Palliative care is not just end of life care: it should be integrated early alongside disease-modifying treatment (Temel et al. 2010 — NEJM; early palliative care improved QoL and survival in NSCLC) Generalist palliative care: provided by all healthcare professionals; specialist palliative care: provided by trained palliative care teams for complex needs Key principles: symptom management, patient-centred care, holistic assessment, shared decision-making, advance care planning, coordination of care Approximately 500,000 people die each year in England; an estimated 75% would benefit from palliative care NICE NG31: individualised care of the dying adult in the last days of life Palliative care applies to all life-limiting illnesses — not just cancer (heart failure, COPD, dementia, renal failure, neurological disease)
Overview
Key Facts
Palliative care is one of the most rapidly growing specialties, reflecting the increasing recognition that good symptom management and quality of life are as important as disease-modifying treatment.
Epidemiology
- ~500,000 deaths/year in England; ~75% would benefit from palliative care
- Only ~50% of those who would benefit currently access specialist palliative care
- Cancer patients: most likely to receive specialist palliative care
- Non-cancer patients (HF, COPD, dementia): significant unmet palliative care needs
Aetiology
Palliative care is needed for any life-limiting condition, including:
- Cancer (all types)
- Organ failure: heart failure, COPD, CKD, liver failure
- Neurological disease: MND, MS, Parkinson's, stroke
- Dementia (all types)
- Frailty and multiple comorbidities
- HIV/AIDS
Pathophysiology
- Total pain (Cicely Saunders): an integrated concept recognising that suffering is not purely physical
- Physical: pain, nausea, dyspnoea, fatigue
- Psychological: anxiety, depression, fear, anger
- Social: isolation, financial worries, family strain, role loss
- Spiritual: existential distress, loss of meaning, religious concerns
Clinical Presentation
Assessment
- Holistic needs assessment: physical symptoms, psychological wellbeing, social situation, spiritual needs, functional status
- Symptom burden: use validated tools (ESAS — Edmonton Symptom Assessment Scale; IPOS — Integrated Palliative Care Outcome Scale)
- Prognosis discussion: honest, compassionate; use Surprise Question
- Goals of care: what matters most to the patient?
Illness Trajectories
- Cancer: relatively predictable decline with clear terminal phase
- Organ failure: unpredictable trajectory with acute exacerbations and partial recovery
- Frailty/dementia: gradual decline over months to years
Red Flags
- Uncontrolled symptoms despite appropriate management
- Patient/family distress
- Conflict about goals of care
- Complex ethical dilemmas
- Need for specialist symptom management
Differential Diagnosis
| Trajectory | Pattern | Example |
|---|---|---|
| Cancer | Progressive decline with clear terminal phase | Lung, pancreatic, advanced breast |
| Organ failure | Fluctuating with acute exacerbations | Heart failure, COPD, CKD |
| Frailty/dementia | Gradual decline, prolonged dwindling | Advanced dementia, frailty |
Diagnosis / Investigation
Bedside
- Holistic assessment: physical, psychological, social, spiritual
- Symptom assessment tools: ESAS, IPOS, numerical rating scales
- Functional assessment: ECOG PS, PPS (Palliative Performance Scale), Karnofsky
- Prognostic tools: Surprise Question, PPI (Palliative Prognostic Index), PaP score
- Advance care planning discussion
Bloods
- Generally guided by clinical need; avoid unnecessary investigations
- May check: calcium (hypercalcaemia), renal function (opioid dosing), FBC (anaemia)
Imaging
- Only if result will change management (e.g. SCC screen → MRI spine)
Special Tests
- Bereavement risk assessment for family
- Carer needs assessment
- Spiritual assessment (FICA tool)
Management
Non-pharmacological
- Patient-centred care: listen to patient's priorities and preferences
- MDT approach: palliative medicine consultant, CNS, SALT, OT, physiotherapy, psychology, social worker, chaplain
- Communication: honest, empathic; avoid false reassurance; explore understanding
- Advance care planning: early, ongoing
- Psychological support: counselling, CBT, mindfulness
- Social support: benefits advice, carers' support, respite
- Spiritual care: chaplaincy, existential support
- Coordination of care: single point of contact; shared care plan; EPaCCS/coordinate my care
Pharmacological
- Symptom management (see specific topics: pain, nausea, breathlessness, constipation, agitation)
- Anticipatory prescribing: for last days of life
- Medication review: stop non-essential medications
Surgical/Interventional
- Palliative procedures: stenting, drainage (ascites, pleural effusion), nerve blocks
- Palliative radiotherapy: bone pain, haemorrhage, SVC obstruction
Referral Criteria
- Complex symptoms not responding to generalist management
- Complex psychological/spiritual needs
- Difficult prognostic conversations
- Complex ethical issues
- End of life care coordination
- Specialist palliative care team (hospital, community, hospice)
Prognosis
- Early palliative care improves quality of life and may extend survival (Temel et al. 2010: metastatic NSCLC patients receiving early palliative care had improved QoL AND median survival of 11.6 vs 8.9 months)
- Palliative care reduces hospital admissions and healthcare costs
- Improves patient and family satisfaction
- Reduces bereavement-related depression and complicated grief in families
- WHO estimates that globally only 14% of those needing palliative care receive it
Other Relevant Information
WHO Definition of Palliative Care
| Element |
|---|
| Improves quality of life |
| For patients and families facing life-threatening illness |
| Through prevention and relief of suffering |
| By early identification, assessment, and treatment of pain and other problems |
| Physical, psychosocial, and spiritual |
| Applicable early in the illness alongside disease-modifying treatments |
Levels of Palliative Care
| Level | Provider | Scope |
|---|---|---|
| Generalist | All healthcare professionals | Basic symptom management, communication, ACP |
| Specialist | Palliative care teams (hospital, community, hospice) | Complex symptoms, psychosocial support, end of life |
| Academic | Specialist centres | Research, education, complex cases |