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Terminal / Palliative Care of Head and Neck Cancer Patients
Overview and Scope
Head and neck cancer accounts for ~8,000 cases per year in England and Wales, and approximately half of all patients will die from their illness and require palliative support. The WHO defines palliative care as "total active care of patients whose disease is not responsive to curative treatment," encompassing physical, psychological, social, and spiritual dimensions.
These patients represent a uniquely complex group because:
- The disease and its treatments profoundly impair functions essential to human identity - communication, swallowing, and breathing
- The boundary between "radical" and "palliative" treatment is blurred (e.g., major resections with limited prognosis)
- Functional deficits lead to social isolation and depression
- Histological confirmation of recurrence can be difficult after prior treatments
An estimated 20% of head and neck cancer patients qualify for palliative care input at the time of initial diagnosis, with an average survival of 5 months within this cohort.
When to Refer for Palliative Care
Indications for palliative care referral (Shuman et al.):
- Unresectable locoregional disease and/or distant metastasis at initial presentation
- Recurrent unresectable disease and/or distant metastasis after treatment
- Patients unable to tolerate anticancer treatment due to disease stage, comorbidity, functional status, or patient preference
A proactive approach integrating palliative care early in the disease trajectory (not just immediately before death) is now strongly advocated.
Symptom Prevalence in Terminal Head and Neck Cancer
| Symptom | Prevalence Range (across studies) |
|---|
| Pain | 62-99% (severe pain in ~77%) |
| Dysphagia | 45-90% |
| Weight loss / anorexia | 43-98% |
| Breathing / airway difficulties | 22-52% |
| Feeding difficulties | 32-89% |
| Fatigue / weakness | ~39% |
| Bleeding | 9-47% |
Patients had a mean of 4.7 symptoms in the last 6 months of life.
1. Pain Management
Types of cancer pain:
- Nociceptive pain - from local compression or invasion by the tumour
- Neuropathic pain - from peripheral/central nervous system dysfunction (due to tumour or prior treatment)
- Mixed presentations are common
WHO Pain Ladder approach:
- Step 1: Non-opioids (e.g., regular paracetamol)
- Step 2: Add weak opioid (e.g., codeine)
- Step 3: Substitute strong opioid - morphine remains the drug of choice for moderate-to-severe pain
Neuropathic pain additions:
- First-line: anti-convulsant (gabapentin) or anti-depressant (amitriptyline)
- Nerve compression: trial of dexamethasone (corticosteroid)
- Refractory: methadone, ketamine, interventional pain procedures
Breakthrough pain:
- Defined as transient exacerbation despite stable background analgesia
- Use short-acting opioid preparations: oral morphine (oramorph/oxynorm)
- Newer formulations: fentanyl (sublingual, buccal, intranasal) - equal efficacy, faster onset, but reserved for movement-related or sudden short-lived pain; requires baseline of ≥60 mg oral morphine equivalent
Opioid-induced neurotoxicity - accumulation of metabolites causes:
- Myoclonus, visual hallucinations, confusion, drowsiness
- Management: reduce dose if pain controlled, check renal function (metabolites accumulate), or opioid switch (e.g., morphine → oxycodone / hydromorphone)
- If renal impairment: use renally-independent opioids e.g., alfentanil
Route of administration - a key challenge in head and neck cancer:
- Oral route often unavailable - use PEG/gastrostomy tube (note: do NOT crush sustained-release preparations - use Zomorph granules or MST Continus suspension)
- Transdermal fentanyl patches: changed every 72 hours; suitable only once pain is stable; less flexible for titration
- Subcutaneous infusion via syringe driver is often preferred in the terminal phase
2. Respiratory Tract Secretion Management
At end of life, retained secretions cause distress for the patient and family ("death rattle"). Three main anti-secretory drugs:
| Drug | Notes |
|---|
| Glycopyrronium | Preferred - less sedation, less agitation than hyoscines |
| Hyoscine hydrobromide | Effective; may cause agitation/sedation |
| Hyoscine butylbromide | Peripheral action; less CNS penetration |
- Balance: reduce secretions without making them too tenacious
- If oral/gastrostomy route unavailable: transdermal hyoscine hydrobromide (Scopoderm) patches
3. Communication Difficulties
As disease progresses, speech becomes increasingly impaired:
- Alternative aids: electronically generated speech devices, written communication
- Loss of communication subtleties has a profound psychological impact
- Advance care planning (ACP) becomes especially important early, while patients can still communicate
- Open-ended discussions about goals of care and future complications should be proactive
4. Terminal Haemorrhage ("Carotid Blowout")
This is a feared catastrophic event, but actual incidence is lower than perceived:
- Rupture of the carotid artery system occurs in an estimated 3-5% of patients who have undergone major head and neck resections
Risk factors:
- Tumour-related: proximity to the carotid artery
- Treatment-related: previous radical neck dissection and/or radiotherapy; post-operative wound healing problems
- Systemic: coagulopathy; age >50; 10-15% weight loss; comorbidities (e.g., diabetes)
Warning signs:
- A herald (sentinel) bleed may precede the fatal haemorrhage
- Visible ballooning or pulsation of the carotid
Prevention:
- Review and stop anticoagulants (warfarin, heparin)
- Review drugs affecting platelet function: NSAIDs, aspirin, SSRIs
- If sentinel bleed occurs: arterial embolization by interventional radiology can delay or abrogate further bleeding
Emergency management (Ubogagu and Harris guidelines):
| Step | Action |
|---|
| 1 | Stay with the patient and family to reduce anxiety and distress |
| 2 | Use dark towels to reduce visibility of blood |
| 3 | Give anxiolytic: midazolam 10 mg deep intramuscular injection (rapid onset, short duration) |
| 4 | Pre-emptively prescribe midazolam before the event occurs |
- Goal of midazolam: reduce patient's awareness and distress; provides retrograde amnesia if the patient survives
- Opioids are generally not needed unless haemorrhage is not terminal and patient reports pain
- At home: full MDT discussion required; community healthcare teams and ambulance service must be briefed in advance
5. Airway Obstruction
Causes at end of life:
- Retention of secretions
- Tumour encroachment into the airway or tracheostomy
Management:
- Decision-making about escalation must be pre-planned
- Palliative surgical options: tracheostomy or tumour debulking in the airway (if appropriate)
- Stridor: high-dose dexamethasone 8-16 mg subcutaneously may reduce peritumour oedema
- Pre-emptive prescription of midazolam (anxiolytic) for the terminal event
6. Holistic / Psychosocial Care
Depression
- Highly prevalent; independently predicts poorer quality of life
- Head and neck cancer patients have a disproportionately higher suicide risk than the general cancer population (linked to male predominance, tobacco/alcohol use, limited social support)
- Screen with brief tools: anhedonia (loss of interest/pleasure) and low mood
- Treatment: psychotherapy + antidepressants
- SSRIs first-line over tricyclics (better tolerability)
- Caution: SSRIs increase GI bleeding risk - significant consideration in this group
- Mirtazapine: useful if appetite stimulation and sedation are acceptable (give at night)
Spiritual Care
- Explore meaning, purpose, hope, and coping at every consultation
- Example questions: "What gives you hope and strength?" / "How are you coping?"
Ethical Issues
Four principles framework:
- Autonomy - patient's right to decide
- Beneficence - act to provide benefit
- Non-maleficence - avoid harm
- Justice - fair use of resources
Key ethical challenges specific to head and neck cancer:
- Provision of artificial nutrition and hydration as death approaches (especially when patient preference is unclear)
- Communication difficulties making patient-centred decision-making harder - forward planning while patients can still communicate is essential
Multidisciplinary Team
Terminal care of head and neck cancer patients requires an integrated MDT including:
- Specialist palliative care physician and nurses
- Otolaryngologist / head and neck surgeon
- Speech-language pathologist
- Dietitian
- Clinical psychologist / psychiatrist
- Chaplain / spiritual care
- Social worker
- Community nursing / hospice teams
- Ambulance service (for home-based terminal events)
Note on recent evidence: A 2024 review on
ethics and palliation in head and neck surgery (Hochfelder & Shuman,
Surg Oncol Clin N Am 2024, PMID 39244287) addresses the ethical complexities in this population and supports early, integrated palliative involvement.
Primary source: Scott-Brown's Otorhinolaryngology Head & Neck Surgery, Chapter 21 - "The Role and Challenges in Providing Palliative Care to Head and Neck Cancer Patients"