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Referral and warning signs
When to refer
Need for specialist palliative care input for complex symptom management or difficult communication issues. Family requiring significant bereavement support.
Red flags
- (Focus shifts from 'red flags' indicating cure to flags indicating uncontrolled distress):
- Severe uncontrolled pain.
- Severe agitation or delirium.
- Severe respiratory distress.
- Evidence of significant family distress requiring intervention.
Signs and symptoms
- Signs Suggesting the Dying Phase (in terminally ill patient with gradual deterioration):
- - Profound weakness, bed-bound.
- - Increasing drowsiness, reduced consciousness, difficulty rousing.
- - Minimal oral intake (food and fluids).
- - Difficulty swallowing medications.
- - Rapidly deteriorating condition (day by day, hour by hour).
- - Changes in breathing pattern (irregular, Cheyne-Stokes, periods of apnoea).
- - Noisy, moist respirations ('death rattle').
- - Peripheral cooling, mottling of skin.
- - Reduced urine output.
- - Decreased communication / interaction.
Risk factors
- Advanced, irreversible life-limiting illness.
Diagnosis
Clinical assessment
Recognizing the dying phase is a clinical judgment based on observing the trajectory of decline and presence of the signs listed above in a patient with a known terminal condition. Crucially, exclude potentially reversible causes for deterioration (e.g., infection, hypercalcaemia, dehydration if potentially reversible and treatment desired, drug toxicity) BEFORE diagnosing the dying phase, considering goals of care.
Investigations
- Generally AVOIDED unless they will directly inform comfort measures or address uncertainty about reversibility aligned with patient goals.
- Key question: 'Will this test change my management plan or the outcome for the patient?'
- Weigh benefit vs. burden for any intervention/investigation.
Diagnostic criteria
Clinical recognition of an irreversible dying process based on a combination of signs in a patient with advanced illness, after considering and excluding relevant reversible factors consistent with goals of care.
Management
Non-pharmacological management
- Communication:
- - Sensitive, honest communication with patient (if able) and family about prognosis and shift in goals towards comfort.
- - Elicit patient/family wishes and concerns.
- - Explain the dying process and common signs (e.g., noisy breathing is often not distressing to the patient).
- - Break bad news sensitively.
- Comfort Measures:
- - Maintain patient comfort and dignity.
- - Gentle repositioning for comfort and skin care.
- - Keep patient clean and dry.
- - Regular, gentle mouth care (moist cloth/sponge, lip balm) - KEY for comfort.
- - Maintain a peaceful environment.
- Support:
- - Emotional and psychosocial support for patient and family.
- - Encourage family presence and gentle interaction (holding hands, talking).
- - Spiritual support as requested/appropriate.
- - Discuss preferred place of death (home vs. facility) if possible and appropriate.
- Hydration and Nutrition:
- - Allow patient to eat/drink if they wish and are able.
- - Focus on sips for comfort; do NOT force feed/fluids if unable to swallow (risk of aspiration/distress).
- - Educate family that loss of appetite/thirst is normal in dying phase.
- - Artificial hydration (IV/SC fluids) generally NOT recommended/beneficial at end of life – can worsen secretions/oedema. Only consider if specific reversible dehydration is thought to be causing distress and fluids align with goals.
- - Artificial nutrition generally discouraged.
Pharmacological treatment
- Symptom Control (Focus on Comfort):
- - Review all medications; stop non-essential drugs.
- - Continue essential comfort medications.
- - Choose appropriate route if unable to swallow (Subcutaneous - SC preferred over IV/IM; Rectal; Transdermal if available). A SC butterfly needle can facilitate repeated doses.
- - Pain: Continue/adjust opioids (e.g., Morphine SC - note SC dose is approx. half the oral dose).
- - Agitation/Restlessness: Consider low-dose benzodiazepines (e.g., Midazolam SC, Diazepam PR) or Haloperidol SC.
- - Nausea/Vomiting: Continue/start appropriate antiemetic via SC route (e.g., Haloperidol, Metoclopramide, Hyoscine Butylbromide).
- - Noisy Secretions ('Death Rattle'): Anticholinergics (e.g., Hyoscine Butylbromide SC, Glycopyrronium SC). Often more for family reassurance.
- - Breathlessness: Low-dose Morphine SC.
- - Anticipatory Prescribing: Prescribe PRN doses of key medications (pain, agitation, nausea, secretions) for SC use so they are readily available when needed.
Monitoring
Focus on patient comfort, assessing for signs of distress (pain, restlessness, breathlessness). Monitor effectiveness of symptom control measures. Provide ongoing support to family.
Complications
- Distressing symptoms if inadequately managed (pain, agitation, breathlessness).
- Family distress due to lack of understanding or support.
- Spiritual distress.
Prevention
- Early introduction of palliative care principles.
- Advance care planning discussions (where feasible).
- Good communication throughout illness trajectory.
- Anticipatory planning for the dying phase.
Patient education
- (Mainly for Family/Caregivers):
- Explanation of the natural dying process and expected signs.
- Focus shifts to comfort and dignity.
- Reassurance about common symptoms like noisy breathing.
- Importance of gentle mouth care.
- Changes in need for food/fluids.
- How comfort medications will be given.
- Importance of their presence and gentle interaction.
- Information about bereavement support.
Uganda-specific notes
End-of-life care often occurs at home. Equipping families with knowledge and basic comfort measures is vital. Access to SC medications (Morphine, Haloperidol, Hyoscine) is essential but may be limited outside palliative care units/hospices. Addressing cultural and spiritual beliefs around death and dying is crucial.
References
- Uganda Clinical Guidelines (UCG) 2023
Chapter 13, Section 13.2.9