This article aims to provide information on end-of-life care (EoLC) in paediatrics, including the signs that death is imminent, how to manage the care of a dying child or young person and support their family, and how to care for the patient after death.
Research suggests that caring for a child or young person at the end of their life is one of the most emotionally challenging and traumatic experiences in practice (Maunder, 2006). This role can instil ‘tremendous anxiety’ in health professionals caring for a child or young person in these circumstances (Together for Short Lives (TFSL), 2017). McCourt et al's (2013) study into nurses’ experiences of providing EoLC in acute hospital settings, found that a lack of education and knowledge on EoLC, including symptom management and identifying when death was imminent, was one of the key factors identified as a barrier in managing the end of life. This article aims to provide a point of reference for nurses, to help increase confidence when providing EoLC for a child or young person.
National Institute for Health and Care Excellence (NICE) (2019) guidance defines the end of life as the period of time when a child or young person is expected or likely to die—this may be within the next few hours or days. The goal of high-quality EoLC is to ensure that they are able to live as well as possible until they die and to ensure that the needs of both the child or young person and their family are identified and met throughout this period and into bereavement (TFSL, 2019).
Care planning and symptom management
Studies have sought to examine the experiences of parents whose child has received EoLC. Although the quality of life for a child at this time is often dependent on their illness, research has shown that children are often reported to suffer many unpleasant symptoms (Blume et al, 2014; Rosenberg and Wolfe, 2017). The most common symptoms that parents perceived to cause suffering for their child tended to be pain, breathing difficulties, feeding difficulties, fatigue and sleeping difficulties (Wolfe et al, 2000; Blume et al, 2014).
In order to manage such unpleasant symptoms, an advance care plan should be developed as soon as this is clinically indicated. This should include details about the child or young person's condition and decisions should be made in conjunction with the patient and their family (TFSL, 2018; NICE, 2019). The advance care plan is a formal document that can be completed either electronically or by hand and up-to-date copies of the plan should remain with the patient, at the setting they regularly attend, and in their medical notes (Child and Young Person's Advance Care Plan Collaborative, 2017).
The advance care plan will include decisions made relating to care in the case of both acute deterioration and the gradual deterioration of the child or young person's condition, along with treatment options, symptom management and the patient's and family's wishes around resuscitation and organ donation (TFSL, 2019). It is important to remember that plans need to be flexible and may need to be altered in order to meet changes in the patient's or family's needs and wishes (TFSL, 2018; NICE, 2019).
Signs that the end of life is approaching
It is impossible to tell exactly when a child will die and this is often a source of great upset for those around them. However, there are some signs and changes that nurses can observe that have been identified by NICE (2019). These changes are listed below, along with possible symptom-management strategies for each, and summarised in Table 1.
| Sign | Symptoms | Treatment |
|---|---|---|
| Change of breathing pattern | Difficulty breathing |
Repositioning |
| Impaired peripheral perfusion | Hands, feet and limbs may get cold |
Keep the child or young person warm and comfortable |
| Reduced oral intake | Reduced interest in, or inability to tolerate, food or drink |
Sips of water, moist mouth swabs |
| Fall in urine output | May be caused by urinary retention or obstruction, which could cause pain and discomfort | Warm bath |
| Altered level of awareness | Reduced consciousness, responsiveness, alertness, confusion and excessive sleeping |
Reassurance |
| Intractable seizures | Frequent, uncontrolled seizures |
Follow local seizure management protocols |
| New onset of profound weakness | Reduction in consciousness. |
Calm environment |
| Increasing pain | Reporting pain, groaning or crying, unsettled, agitated, reluctance to move, touching painful areas, reduced oral intake | Pain assessment |
Changes in breathing pattern
There are several respiratory symptoms that can be expected to occur at the end of life in paediatric patients, the most frequent and distressing of which tend to be difficulty breathing, coughing (including coughing up blood) and retained secretions (Craig et al, 2015). Retained secretions can often cause noisy breathing, rattling or what is sometimes referred to as the ‘death rattle’ as patients are unable to clear the build-up of secretions (TFSL, 2017). Drugs can be used to help in this situation, including hyoscine hydrobromide to dry up secretions, subcutaneous diamorphine or midazolam (TFSL, 2017).
Causes of breathing changes can also include anxiety, physical discomfort, environmental factors and medical disorders (NICE, 2019). An anxious child or young person should be encouraged to discuss their anxiety, be reassured and helped to manage their anxiety in appropriate ways, including the use of breathing techniques and anti-anxiety medications if required (NICE, 2019). Physical discomfort and environmental factors may be managed through simple strategies such as position changes and room temperature alterations (NICE, 2019). Medical disorders such as pneumonia, heart failure, sepsis or acidosis should be appropriately managed as clinically indicated (NICE, 2019).
Sadly, in some situations, the child or young person may experience severe sudden onset breathlessness, which may be a terminal event. The goal of care is always to get the child settled and comfortable as quickly as possible and buccal midazolam and morphine may be given until the child is settled (TFSL, 2017).
Impaired peripheral perfusion
It may be expected that, shortly before death, a child or young person's hands, feet and limbs may get cold, and the colour of their skin may change from a healthy pink colour to a pale, grey pallor (NICE, 2019; TFSL, 2019). Sometimes the skin can become clammy, they may sweat profusely, and the skin may start to break down. Care of the patient at this stage should focus on keeping them warm and comfortable, but little can be done to improve these symptoms as they are caused by the initial stages of molecule breakdown, as a result of the hypermetabolism that occurs in the body at the end of life.
Loss of interest in or ability to tolerate drinks or food
The child or young person's appetite and thirst is likely to reduce at the end of life, which is often a source of concern for families as they worry that inadequate nutrition or dehydration may hasten death. It is important that families are supported to understand that patients nearing death require less fluid and nutrition to support them as their bodies are less active at this stage (TFSL, 2019). An inability to tolerate food or drink due to nausea or vomiting can be managed with anti-sickness medication (TFSL, 2017).
Management of decreased fluid and nutritional intake should be in accordance with the wishes of the child or young person and what they feel able to tolerate (NICE, 2019). Sips of water, or a moist mouth swab can be helpful for mouth care and to relieve thirst (TFSL, 2017; 2019). Patients who were previously fed via intravenous nutrition or enteral tube should be involved in discussions on whether continuing this method of nutrition is in their best interests (NICE, 2019). Dehydration may be managed if clinically indicated or it is felt to be causing distressing symptoms such as dizziness (TFSL, 2017).
A marked and unexplained fall in urine output
The amount of urine that a body produces often decreases at the end of life, but, for some young patients, an inability to pass urine may be due to urine retention (often a side effect of opiates) (TFSL, 2017). If this is a cause of discomfort, it can be managed through a warm bath, a relaxed atmosphere, or gentle bladder massage, although in some cases catheterisation may be necessary (TFSL, 2017).
Altered level of awareness
Shortly before death, a child or young person may display an altered level of awareness, such as reduced consciousness, responsiveness and alertness, confusion and excessive sleeping (NICE, 2019). Patients who become agitated should be reassured, kept safe from injury and the possible causes of the agitation explored (NICE, 2019). If pharmaceutical management is felt to be of use, benzodiazepines, anti-anxiety and anti-psychotic medications can be considered (TFSL, 2017; NICE, 2019).
When a young patient becomes unresponsive, there is growing evidence that suggests that they may still be able to hear and be aware of what is going on around them, so families and health professionals should continue to talk to and reassure them (Leigh, 2001).
Intractable seizures
For some children and young people, seizures can be expected as the end approaches, but on occasion intractable seizures may occur and keep occurring even with optimal management. Seizures should be managed with anti-seizure medication, such as midazolam, and pharmacologically managed unless this has proved to be ineffective (TFSL, 2017). Possible causes of the seizures should be explored, as drug toxicity is known to contribute to seizures (TFSL, 2017).
New onset of profound weakness
Profound weakness is another symptoms that often occurs during EoLC. This often occurs in conjunction with a reduction in consciousness, making this less distressing than other symptoms. However, children and young people should continue to be reassured and have their anxiety managed during this time, through gentle touch, continuing to talk and reassure the patient, and encouraging the family to continue to talk to them.
Increasing pain and need for analgesia
Managing pain early and well is the best way to avoid severe uncontrolled pain during EoLC. It is essential that drug doses are increased enough and that the right analgesia, such as morphine, is used in order to manage rapidly increasing pain (TFSL, 2017). Children and young people who are in pain should be assessed using an age-appropriate pain assessment tool and consideration should be given to possible overlooked sources of pain, such as neuropathic, gastrointestinal, bladder or bone pain, pain from pressure ulcers, headache, musculoskeletal pain or dental pain (NICE, 2019). Pain can be therapeutically and pharmacologically managed in accordance with guidelines.
Care after death
When a child or young person has died, they should be cared for in a location of the family's choice where possible, whether this be a hospital, a hospice or at home. Many families will choose to wash their child and remove all medical equipment where possible, but this should be their choice (TFSL, 2019).
As a practical measure, health professionals should recognise that it is useful to incline the patient's head and shoulders slightly to prevent pooling of body fluids in the upper body.
When death occurs, the body goes through the following processes (TFSL, 2019):
All deaths must be verified by an appropriately trained health professional, who should establish that the death is expected, the ‘do not attempt resuscitation’ documentation is signed in line with current guidance, and that the death does not need reporting to the coroner (TFSL, 2019). Local guidelines will dictate requirements for the cooling and transport of the body after death, but families should be encouraged to be involved in the process of caring for their child after death as much as they wish. They may wish to collect memories of their child, by taking handprints, footprints and locks of hair, for example.
Bereavement support
It is important to ensure that families have a network of support in place and each family's bereavement support should be individual to their needs (TFSL, 2019). As well as local bereavement support, there are various charities available that support families who are bereaved (see Box 1, which also provides further reading for nurses).
Support throughout EoLC
It is important that health professionals providing EoLC for children or young people are aware that discussing the advance care plan can be distressing for children and young people and they may be reluctant to think about EoLC, have difficulties discussing EoLC, or have differences of opinion about the care plan (NICE, 2019).
Research into parents’ priorities for EoLC has highlighted that they wish to have their faith respected, receive honest and complete information, have access to health professionals when needed, have well-planned care that is communicated clearly, have the integrity of the parent-child relationship preserved and witness emotional expression and support by staff (Meyer et al, 2006).
Lastly, it is widely identified that providing EoLC for children and young people is an emotionally difficulty process for health professionals. All staff involved need support to reflect on this process and organisations should arrange a debrief for all staff involved in the EoLC and death of a patient, to ensure that lessons are learned and to improve practice for the future (TFSL, 2019).