Think about the needs of life-limited children before you read on. Create a mind map of the needs of life-limited children that you can think of with branches for these headings:

• Physical needs

Answer:

Safety

Comfort

Hygiene

Privacy and dignity

Nutrition – specialist enteral feeding might be needed for some children through a nasogastric tube or gastrostomy

Breathing – oxygen, suction, tracheostomy or long-term ventilation is required for some life-limited children

• Emotional needs

Answer:

To be cared for and loved

Valued for themselves

Recognised as an individual

To express themselves and be listened to

Challenged and supported to reach their potential

• Spirituality

Answer:

This will depend on each individual child and their family but might include things the child enjoys such as:

• Play alone and with other children
• Music
• Swimming
• Walking
• Outings

Social needs and interactions with peers

Answer:

School and education

Outings and days out with siblings and friends

Social time with family

Ling et al. (2016) found that families participating in their qualitative study most wanted support at home but also had concerns about the potential effects on family life and siblings of community care services and professionals visiting their home.

Read this article and write a reflection about why you think families might want support in their own home, highlighting the specific concerns outlined in this paper:

Ling, J., Payne, S., Connaire, K. and McCarron, M. (2016) ‘Parental decision-making on utilisation of out-of-home respite in children’s palliative care: Findings of qualitative case study research – a proposed new model’, Child: Care, Health and Development, 42: 51–9.

Answer: As this is your own reflection piece, there are no ‘answers’, but you may want to share with fellow students or your course tutor for feedback.

Jack was diagnosed in utero with anencephaly when his mum was 36 weeks gestation. The local maternity and neonatal team referred Jack’s mum to a hospice service because his diagnosis met the hospice referral criteria.

Jack’s parents visited the hospice with the hospice at home team alongside the symptom care team. Jack was born at 41 weeks gestation and survived for 14 hours after delivery. His parents decided to remain at the hospital for care. The hospital team followed the individualised symptom care plan to manage Jack’s end of life which was written by the symptom care team. Jack’s parents decided to donate his heart valves, which had already been discussed and planned for as part of Advance Care Planning (ACP), which is a process of discussion between an individual and their care provider and often those close to them. Jack was then transferred to the hospice for care after death. His parents were able to access bereavement support via the hospice. Jack had access to a 24/7 paediatric specialist care team who would act as a central point to co-ordinate and lead his end-of-life care (Department of Health 2008a).

• Think of a time when you have worked with a family that may not have been offered these choices. What do you think are the benefits of having open discussions with families?

Answer: Families are not able to know what they do not know; this means that as professionals if we do not share information with families about choice of place of care then they may not ever know there was a choice. This is supported by NICE guidelines (2016) which suggests that professionals begin discussing an Advance Care Plan with parents during the pregnancy if there is an antenatal diagnosis of a life-limiting condition. For each individual think about who should take part in the discussion, for example:

obstetricians

midwives

neonatologists

specialists in the life-limiting condition

a member of the specialist paediatric palliative care team.

Families can choose to not explore alternative care to the hospital. However should their baby survive with very complex health needs then the hospice may not be required for end-of-life care but would be able to provide respite care to families.

• How do you think the needs of parents for an in utero referral may differ from parents of a child or young person?

Answer: Every family’s need is very individual whether it be an in utero referral or a child. It could be difficult for parents who have an in utero referral to know what they want after they have delivered their baby as they have not yet met them. It could feel overwhelming as they have the joy of their pregnancy mixed with the sadness that their baby has a life-limiting condition. If this is a first baby or a baby they have waited a long time for, it could be a very difficult time for the parents.

Matthew is 18 and has been known to a children’s hospice service for many years. He has a diagnosis of epilepsy, scoliosis, cerebral palsy and a ventriculoperitoneal shunt (VP) in situ. He receives respite care from the hospice service both in house and from the hospice at home team.  Matthew has had issues with recurrent chest infections which led to a deterioration and admission to an adult ward via Accident and Emergency. The hospital team informed his foster mother that Matthew was entering end of life; his medicines were discontinued and a ‘Do Not Attempt Resuscitation’ (DNAR) order was completed. Due to Matthew’s age he needs to transition to adult services. The DNAR was replaced with an Emergency Care Plan (ECP). The difference in these two documents is that there is discussion with families around things that they would like to be managed in an end-of-life event. The individualised symptom care plan can be helpful to manage anticipated symptoms. These plans are shared with all settings that Matthew uses or may use. He also has access to a 24/7 paediatric specialist care team (Better Care: Better Lives, 2008). The challenges for Matthew and his mother moving forward into adult services include whether services will be funded to support the family and the provision available to provide respite care to a young man like Matthew.

• Think about transition from childhood to adulthood and the need for young people to move from children’s to adult services. What challenges do you think families face?

Answer: Transition can cause lots of uncertainty for young people and their families. Families and carers often feel left out once the young person moves to adult services, which can cause them considerable distress. The young person may themselves ask for their family not to be involved so families may also undergo a 'transition' in their involvement in the care of the young person. Alternatively, the young person may want their family involved after they move to adult services. We need to understand how best to support and help families and carers through the transition period. Families will possibly experience a feeling of loss as the team around them changes; it is important for children’s services to work with adult services so aid smoother transition.