List your anxieties about providing end-of-life care for children.

Answer: A group of third year nursing students at Kingston/St Georges University were asked in a pre-class questionnaire what their anxieties were regarding care of a child at the end-of-life and their family. Their responses are represented in the word cloud below. Do they resonate with your responses to this activity ?

(The larger the print means the more students responded with this issue)

Colin and Jill’s 1 year-old daughter Jess had an undiagnosed life-limiting condition and is being cared for in the hospice at the end of life. They have three other children aged 9, 7 and 2. Colin’s parents live abroad. However Jill’s parents live close by and have been heavily involved in helping with Jess’s care over the last year as well as the needs of the other children.

• What benefits would hospice care potentially have for this family?

Answer: Hospice allows the family to be together in an environment which mimics home with clinical support/expertise as required. Siblings can stay and be involved in child’s care and still have close contact with parents. Hospice staff can take care of siblings and implement pre-bereavement activities with siblings.

• Colin seems to be less engaged in care and on the periphery – what would you do?

Answer: It is important that family-centred care is not mother-centred care and that fathers are also involved as much as possible. The nurse should ensure that Colin gets the same information as Jill and that he is given time to express any concerns he may have.

• How could you as the nurse address the potential needs of Jill’s parents (Jess’s grandparents)?

Answer: Grandparents will feel pain for their child and also their grandchild. They will likely feel sadness, anger and fear to name but a few. The nurse should encourage parents to involve grandparents and the nurse should of course display empathy and understanding to grandparents showing a human, compassionate approach.

• Jill is anxious about the other children being around Jess, wanting to protect them. How would you guide her?

Answer: Highlight to Jill the needs of siblings to be involved, the need for information, reassurance and love. Child concepts of death may also help. Resources available on, for example, Winston’s wish can also be used to explain death to children:

www.winstonswish.org.uk/supporting-you/publications-and-resources/

Piaget's concepts of cognitive development can be applied to deal with children at various ages (Piaget, 1969):

Under 2	2-7 years	7-12 years	adolescence
No concept of death. Care must be aimed at providing physical comfort.	Children may see death as a reversible process; it is important to minimise separation anxiety and to deal with guilt feelings	Understands permanence of death, leading to the possibility of guilt feelings, abandonment, and fears of body mutilation	The adolescent struggles between a physiological need to be independent, possible worsening physical symptoms and lack of control.

The seminal work by Lazarus and Folkman (1984) identifies two different approaches to coping (which can be applied to parents coping with their child’s end-of-life care):

• Problem-focused coping (a direct approach where the problem is evaluated and action is taken to avoid/change the situation)
• Emotion-focused coping (this approach is much more indirect, with the focus on reducing the emotional consequences of stressful or potentially stressful events).

Considering Lazarus and Folkman’s coping strategies, which do the following parental actions indicate?

Parental action	Lazarus and Folkman’s approach
Organising grandparents to collect siblings from school	Problem solving
Talking about feelings to staff nurse	Emotion
Surfing the net for information about symptom management	Problem solving

Consider the benefits of using the subcutaneous route for children at the end of life.

Answer: Many advantages are notable when administering medication via subcutaneous routes including the fact that it is less invasive than intravenous, intravenous access is not required, it is easy to monitor for inflammation and it can be relatively easily resited if required.

You are caring for a child at the end of life and the issue of starting a syringe driver for his pain relief has been raised. Mum is anxious that this will hasten death, so she wants to wait a few days.

• Consider the management of this challenging issue

Answer: It is not uncommon for parents to fear the use of syringe driver and particularly subcutaneous opioids like morphine. It is very important to take the time and provide James’s mother with clear information about the reason to introduce the driver and the medications utilised.

You need to explain that in the final days of life the child is no longer able to absorb medications via the gut as effectively. James’s body is slowly shutting down so you need to reassure his mother that this is something that normally happens. It means the medications no longer control symptoms as effectively. The syringe driver will allow a small dose of the medications to be given constantly throughout the day and this ensures good symptom control.

Show the SC device and driver to the mother. Explain children who cannot take medicine by mouth can have morphine through a small plastic tube that sits under the skin (subcutaneous or 'sub-cut'). They may then have a portable pump, which they carry about with them. Give mother time to touch and play with pump.

Additionally, it is important to remind her that morphine is a very effective medicine for pain management and shortness of breath. The correct dose is the amount which eases the child’s pain not hasten his death. It is important to reassure her that there is no evidence that opioids such as morphine hasten the dying process when a person receives the right dose to control the symptoms he is experiencing. In fact, research has suggested that using morphine near the end of life may help a person live a bit longer

Which professionals may work collaboratively to assess and manage the pain of a child at the end of life?

Answer: A team approach to care is essential. The different professionals that may work collaboratively to assess and manage the pain of a child at the end of life may vary slightly, depending on the setting, but would include:

Nurse

Medical staff

Pharmacist (for guidance and advice re preparations/doses)

Play specialist (for distraction techniques)

Parents

Occupational therapist (assist to ensure correct equipment is fitted correctly to ensure comfort is maintained)

Declan is a 4-year-old with metachromatic leukodystropy (MLD). He is non-verbal, has global developmental delay, epilepsy and frequent muscle spasms. Declan receives all his nutrition via gastrostomy and requires frequent oral suction. Mum carries out all Declan’s care at home with some input from carers.

In recent months Declan has had multiple admissions to hospital. Most of the admissions are a result of Declan’s increasing chronic lung disease and his susceptibility to chest infections.

Declan begins to experience an increase in his seizure activity. He has increased secretions, which have become thick and green and difficult for him to cough up. He is more agitated, restless and irritable.

How would you assess Declan’s pain?

Answer: Pain assessment should utilise a number of multidimensional measures to assess pain in children

1. Self report – for children over 4 years. A number of useful pain scales exist. But in Declan’s case he is unable to communicate. We could utilise the Paediatric Pain Profile
2. Parental reporting – it is important to work in partnership with parents. Parents know their child well and can provide insight and interpretation of changes in behaviour. However, this should never form the sole basis of assessment as sometimes parents can under-report. Parents can also provide a clinical history of the symptom, the nature, quality, intensity, exacerbating and relieving factors
3. Observation – observe for changes in activity levels and behaviour of the child. Does the child cry, not want to move, more irritable or withdrawn?
4. Physiological – changes in heart rate, respiratory rate and blood pressure may provide indication that there is some pain
5. Other – explore past pain experiences and strategies, the meaning of the pain to the child and the family and their emotional state

• How would you manage the symptoms described?

Answer: Essential to review his symptom management plan. Declan is suffering from a number of different symptoms:

Increased seizures activity – arrange a medical review. (Declan’s current anticonvulsant medications may need increasing or new medications introduced.) Important his family has clear seizure management plan for emergency treatment for future increasing seizures. This will include what medications should be and escalating doses. Ensure Declan’s safety and dignity during seizure. Move things away so he does not hurt himself and put something soft under his head.

Increased secretions (thick and green and difficult for him to clear) – there are number of measures that could be considered at this time:

• Positioning to help secretions not pool in Declan’s mouth and drain via gravity
• Gentle suctioning
• Offer some very gentle physiotherapy
• Medications can be utilised at times to dry up secretions, but side effects are often experienced
• Reduce the volume and speed of feeds
• Nebulised normal saline can sometimes be helpful

 Agitated and restless – nurse Declan in a quiet and safe environment, using medications where necessary. Midazolam is commonly used at this time. Ensure causes of the agitation and restlessness are evaluated and addressed – that is it being escalated by increasing pain.          It is very important to reassure families that restlessness and agitation are often a part of the dying process. Acknowledge it is very difficult to witness but that is often not as distressing to the child as it is observing.

• How would you address Declan’s emotional needs?

Answer: By providing compassionate care. Talk to Declan as you go about your normal nursing care, taking the time to explain and reassure Declan and his family. Encourage his family to cuddle and talk with Declan.

• In what ways would you ensure Declan’s care is child and family centred?

Answer: By including and explaining all that is happening. Encourage family members to be part of all Declan’s care. Let them be involved and plan how Declan’s care is attended to – when would you like to do the bath, etc. Work as team to provide Declan’s care.

• What other care would you provide to ensure Declan is comfortable and that the complications of reduced mobility are minimised?

Answer:

Provide regular mouth care

Ensure Declan’s hygiene is attended to – bathing, regular changing of nappies

Monitor for pressure areas – check skin regularly, reposition frequently, massage and utilise pressure mattress as necessary

If tolerated, get Declan out of bed for short periods in his wheelchair or in an appropriate supportive chair, such as gel chair.

• What symptoms could you anticipate in the future?

Answer:

• Increasing pain
• Increasing difficulties with secretions
• Increased seizure activity
• Constipation
• Difficulty tolerating feeds – nausea and vomiting
• Dyspnoea
• Increasing delirium and agitation

Richard is 10 years old. He has Ewing's sarcoma and had a previous above-knee amputation. He has endured many years of treatments. Recently he has relapsed with no further treatment available. It is anticipated that he only has months to live. His parents do not want him to know he is dying, but are keen to get him home as soon as possible.

You are the registered nurse on night duty. It is 2am and you wander in to check on him. You find Richard awake and he says he is worried and can’t sleep, and he then asks, ‘Am I going to die?’

• Applying ethical principles how would the nurse address this issue?
• Consider and jot down the potential benefits of care at home for Richard as the end of life draws near.

Answer:

Autonomy – the right to self-determination

Non-maleficence – the need to avoid harm

Beneficence – the ability to do good

Justice – fair and equitable

Seminal work suggests that children with long term illness develop an awareness over time that they have a condition from which they may not recover – the stages are highlighted below. Given that he has had the condition over many years and would have witnessed other children with similar conditions relapsing and dying, and further given his conversations with the night nurse it is very likely that this theoretical perspective holds true in Richard’s case.

• I am very sick
• I have an illness that can kill people
• I have an illness that can kill children
• I may not get better

(Lansdown & Benjamin, 1985)

Such a situation upholds the notion of ‘mutual pretence’ (Bluebond-Langner, 1978), that is, where both parties are aware of impending death but do not disclose such knowledge as a way of protecting one another. Negotiation and explanations to parents is crucial here, alongside explanations about the potential harm to the child if they do know and can’t verbalise their feelings/fears (the fine balance between beneficence/malbeneficence).

It is very important to not be dismissive of Richard’s question because of fear of saying the wrong thing. Research indicates that if a child asks this question, it is most likely that know the answer. Very important to take the opportunity to explore Richard’s thoughts, fears, desires and concerns.  Let Richard tell you. Then ask Richard if it is okay that you share his worries with his parents. Reassure him that talking with his parents may make him feel better. Important then to share this conversation with his parents and then encourage his family to talk with him. Reassure them that they don't have to do this conversation alone. Make yourself available to participate in the conversation or link them with a social worker if that is their preference.