The child's details need to be on every page and the pages numbered to ensure that no pages go missing. |
Brief background details giving the reason for the plan and the child/young person's medical condition so that anyone following the plan can appreciate the context. |
As much information as possible on the particular symptoms/signs that this individual child or young person will show or tends to show in an emergency situation. Often this is best put in the words of the parent/carers and promotes their ownership of the plan. |
The appropriate interventions in the event of an emergency must be clearly specified and in the template there is a list of suggested interventions to discuss with the family and select from so that the wording is clear and meaningful. The plan should be positive, emphasising what to do rather than what not to do. |
Whom to call with the phone numbers needs to be on the plan itself. |
The consultant must sign. This is a medical care plan and needs to be the responsibility of the child's lead paediatrician. |
There is no fixed review date. The plan does not time expire. |
There needs to be a system for all copies to be promptly changed if the plan changes so a record of where each copy is needs to be part of the plan itself. |
Case example 1 |
Child A had had a severe brain injury at birth. She had frequent hospital admissions including ventilation on PICU during her first year of life. |
At 5 years of age she again required very frequent and prolonged hospital admissions with chest infections and seizures. On several occasions she was assessed by the intensivists but was managed on the ward. Her parents wanted her to have every possible intervention to give her a chance to recover from each episode. |
However, they were aware that her quality of life was deteriorating, with longer hospital admissions for intravenous antibiotics and chest physiotherapy, and shorter periods between admissions. |
Parents initially resisted making a plan of care. They preferred to discuss things at each deterioration with the hospital paediatrician who had known child A since she was a baby. However, the change to a ‘hot week’ on call system lead to their agreement to have a PRP for their little girl. They did not want to make decisions with an unfamiliar medical team. They agreed to a plan where she would have a trial of bag and mask ventilation for apnoea but would not be resuscitated from a cardiac arrest. A severe chest infection would be treated with intravenous antibiotics and physiotherapy, but ventilation would not be appropriate. |
Child A was admitted with a severe chest infection. Intravenous antibiotics were started but she deteriorated very rapidly and died in mother's arms on the children's ward. Her parents were glad she had not been taken to PICU and were a little regretful that she had had the intravenous line set up in the end. |
Case example 2 |
Child B, an 11-year-old girl with lissencephaly and very severe neurodisability was admitted from the short break unit to the children's ward with cyanosis and depressed respiratory effort. The PRP accompanying her indicated that bag and mask ventilation was appropriate although endotracheal intubation and ventilation should be avoided. There was also, in fact, an expired DNAR order in the hospital case notes. |
Child B responded to bag and mask ventilation and recovered to go home. It subsequently transpired that the respiratory depression was caused by codeine which was being given for a fractured humerus. |
Case example 3 |
Child C was a 14-year-old boy with very severe neurodisability. He had had a respiratory arrest and had been treated on the PICU with intravenous antibiotics and invasive ventilation. It had been hard to wean him off the ventilator and parents and his care team agreed that it would not be appropriate to put him through that ordeal again. So a PRP was made for child C by his paediatric neurologist that specified treatment with oral antibiotics for chest infection, and in the event of an acute deterioration, oxygen and suction only; with a plan to stay home. |
Child C developed a chest infection and his mother took him to the GP. The GP proposed admitting him to hospital but his mother showed the PRP and said she wanted him to stay at home. The GP prescribed oral antibiotics and home oxygen. Child C deteriorated rapidly and died at home with the support of the children's community nursing team. |
The parents of child C were enormously relieved that he died peacefully at home and not in hospital or even in an ambulance, and said that this significantly helped them in their grieving. |
Case example 4 |
Child D was a 3-year-old boy, with an unidentified but progressive neurodegenerative condition. He had limited movement, no cough nor gag reflex. He was having recurrent apnoeic episodes and prolonged hospital admissions with chest infections. |
Mother spoke little English. The family were very mobile because of debt and child D had been admitted to four different hospitals within the region. |
The disability paediatrician met the parents together with an interpreter and the Asian link nurse. The parents agreed that ventilation was not appropriate but were insistent that he should have intravenous antibiotics for chest infections and cardiopulmonary resuscitation. |
Several members of the wider family visited him in hospital and also expressed views that everything possible should be done to preserve his life. |
The medical and nursing staff were of the opinion that the re-siting of intravenous lines was a burden of discomfort to child D and that resuscitation was inappropriate. The parents agreed to a PRP for him to have oral antibiotics and facial oxygen only in the event of a deterioration, but then changed their minds a few hours later. |
In the end child D deteriorated despite intravenous antibiotics. The consultant paediatrician was present when he stopped breathing and gave five inflation breaths from the bag and mask then placed the baby in mother's arms and no other resuscitation was attempted. |
Many members of the family were present and were satisfied with his care. The fact that the child was attached to intravenous fluids and monitors until the last may have helped to reassure them that all that could be done had been done. |
Case example 5 |
Child E, a teenager in the end stage of a neurodegenerative condition was totally dependent for all care and was having recurrent chest infections. |
His family struggled to cope with his needs so he was living in the short break unit. |
He required recurrent admissions to the hospital high dependency unit for intravenous antibiotics, chest physiotherapy and oxygen for chest infections and although his mother visited when he was in hospital, she would leave the ward when doctors tried to discuss future management and resuscitation decisions. |
The community paediatrician met child E's mother and his named nurse on the short break unit in the context of reviewing the nursing care plan. A PRP was developed with his mother and the nursing team. Child E's mother acknowledged that the end of life was near and she wanted her son to stay in the short break unit with familiar nurses around him. She therefore agreed to a plan for airway management and oral antibiotics only. |
Child E was actually admitted to hospital for his final illness but was nursed in a side room on the children's ward by a team of nurses from the short break unit who brought in all his toys and music to replicate his own bedroom and his mother was with him when he died. |
DNAR, do not attempt resuscitation; GP, general practitioner; PICU, paediatric intensive care unit; PRP, personal resuscitation plan.