End Of Life And Terminal Care

Description

General and supportive measures

Terminal Care

Medicine treatment

Referral

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ICD-10 code: Z51.1

DESCRIPTION

The end of life phase is defined as that stage where it is recognized that the child’s health is in a state of steady decline, whereas the terminal stage is the last few hours of life.

Although prognostication is more difficult in children compared to adults especially when it comes to non-malignant conditions, the following may serve as indicators that prognosis is becoming more limited:

• Increasing frequency or duration of hospitalisations.
• More severe disease-related complications with downward drifting baseline.
• Decreasing response to disease modifying treatments.
• Decreased duration of benefits of transfusions (especially when these benefits are shorter than the expected lifespan of the blood product).
• Increasing fatigue and prolonged periods of sleep.
• Anorexia and cachexia.
• Decreasing urine and stool output.
• Child less interactive, becoming increasingly withdrawn and less interested in surroundings.
• Deteriorating physiological parameters.
• Increasing anxiety or agitation or in some children increasing peace and serenity and actively seeking out of opportunities for legacy making.

GENERAL AND SUPPORTIVE MEASURES

• Advance care planning:
  • Is a process of discussions between families and healthcare providers about preferences for care (including place), treatments and goals in the context of the child’s current and anticipated future goals.
  • Should include information on resuscitation status and documentation of decisions on limitations of interventions.
  • Should outline plans for anticipated complications/end of life events before they arise.
• Symptoms often intensify at the end of life and treatment should be continued and intensified as needed. Alternative routes for administering medications should be sought in children who lose the capacity to swallow: these include the buccal and rectal routes, naso-gastric tubes, transdermal patches and the subcutaneous route.
• Parents, caregivers and siblings should be actively counselled and prepared for the child’s death.
• Try limit hospital admissions or reduce the duration of hospital stays where family have the capacity to care for their child at home.

TERMINAL CARE

Indications for inpatient hospital or hospice inpatient terminal care:

• Hypoxia and respiratory distress where oxygen therapy provides relief and not already available at home.
• IV/naso-gastric fluid requirements or medication administration needed to relieve suffering.
• Carer/s unable to cope at home.
• Symptom control needing to be intensified or provided intravenously.

Feeds and fluids at the end of life:

• Anorexia and refusal of feeds/fluids in dying patients is a normal phenomenon and not an indication for naso-gastric feeds or intravenous fluids as these may prolong dying.
• Encourage the family to ‘feed for comfort only’ and reassure them that the dying child is not hungry.
• Decreasing fluid intake is helpful for the dying process: decreases excessive secretions, urination, pulmonary and cerebral oedema.
• Ketosis is also beneficial in that is suppresses appetite and also aids release of endorphins (natural pain killers).

Investigations at the end of life:

• Investigations should be kept to a minimum and only done if it is believed that doing these will shorten the duration of hospital stay or in some way contribute to the child’s comfort.

MEDICINE TREATMENT

Antibiotics at the end of life:

• Oral antibiotic therapy may be started, where it is thought that a course of antibiotics could shorten the duration of discomfort or hospital stay.
• Non-treatment of a terminal pneumonia (a common end of life event) is an acceptable palliative care practice.

Medication at the end of life:

• Stop all unnecessary medications (e.g. multivitamins, TB treatment, ART) that are not contributing towards symptom control and adding to pill burden in an actively dying child.
• Continue medications that if discontinued could cause distressing symptoms (e.g. calcium, anti-failure medications).
• Consider use of alternative routes of administration of symptom control if not able to take orally.

Management of terminal agitation or restlessness:

• Exclude unmanaged pain.
• Exclude urinary retention.
• Check pressure sites for bedsores.
• Midazolam
  • By IV/SC infusion: 250–1500 mcg/kg/24 hours as starting dose, titrating upwards against symptoms and sedation, 10– 60 mcg/kg/hour.

REFERRAL

Discuss with a specialist:

• Children with symptoms not described here.
• Children not responding to management.

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Standard Treatment Guidelines And Essential Medicines List For South Africa, Hospital Level, Paediatrics, 2023 Edition

Chapter: 21. Palliative Care,  21.3 End Of Life And Terminal Care, 21.3.1 Terminal Care