Funding The authors are grateful to the National Lottery Fund for short-term funding for time for AW, to help develop paediatric palliative care in Nottingham.
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.
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There are increasing numbers of children with severe and complex neurodisability living in the community1 often dependent on technological devices such as gastrostomy, tracheostomy and with home oxygen and suction facilities.2 3 They usually have the support of children's community nurses, special school staff and a short break service as well as their parents/carers. These children include those with neurodegenerative conditions, where their neurological and respiratory status is progressively deteriorating towards inevitable death (Association for Children's Palliative Care (ACT) group 34), or they may have a static brain or spinal cord injury of such severity that they have life-threatening events—for example, severe chest infections, unstable upper airway, apnoeas, prolonged seizures (ACT group 4).4
The child's lead paediatrician needs to have timely discussions with the parents/carers and sometimes the child about the appropriate level of intervention during an acute or even gradual deterioration, including withholding or withdrawing life saving treatment.5 6
What is already known on this topic?
▶ Disabled children with life-threatening and life-limiting conditions need to have care plans including resuscitation plans, made in partnership with families and available to support best care whenever and wherever the child deteriorates.
▶ Doctors find it difficult to make these plans with children and families in a timely way.
What this study adds
▶ A system for disabled children to have a family-held personal resuscitation plan is a positive approach to end of life planning which supports earlier discussion of the options with parents and wide communication of best care decisions.
▶ Parents and nurses value and are empowered by a written resuscitation plan signed by the consultant paediatrician whom they know and trust.
National guidance on the subject includes:
▶ The ACT pathway guidance standard 5 states that ‘Every child and family should be helped to decide on an end of life plan and should be provided with care and support to achieve this as closely as possible’.7
▶ The National Service Framework for children young people and maternity services guidance to commissioners recommends prospective discussions about end of life decisions. Children and parents should be involved and supported in making choices and care decisions, such as a written specific end of life care plan, including resuscitation choices.8
▶ Recent General Medical Council guidance advises doctors to avoid making assumptions about patient's choices at the end of life and provides information on the legal framework.9
Even when plans have been made they tend to be documented only in hospital case notes and resuscitation decisions are usually recorded on a separate do not attempt resuscitation (DNAR) form.12 13 This information therefore may not be available when and where the child's condition deteriorates14 and there is a risk of the child being subjected to inappropriate interventions, particularly when in a short break facility, school, the emergency department or when distressed parents call for emergency ambulance/paramedic support.
We present a system for disabled children with life-limiting and life-threatening conditions to have family-held personal resuscitation plans (PRPs) which support early discussions about, and the provision of, appropriate care wherever the child is.
Development of the PRP template
The disability paediatricians and paediatric neurologists of our district found the hospital DNAR system inappropriate for their clients and were either not approaching parents to discuss resuscitation or were writing resuscitation plans in the child's case notes. The latter were not easily found by nurses in an emergency and sometimes called for impractical interventions such as ‘bag the child until parents arrive’. In this situation nurses felt unsupported by medical staff and many children with life-threatening conditions had no documented resuscitation plan and were therefore at risk of inappropriate care in an emergency. Discussions between nurses and doctors led to the suggestion of the development of a PRP as an extension to the family-held emergency care plans which many disabled children already had.
Paediatricians wrote a template based on the plan they would write in a child's notes and took it to focus groups of hospital and community professionals where the essential features of a PRP were identified, (table 1). The template was then piloted and changed with feedback from users (figure 1).
Making a PRP with a family
There are a number of opportunities for introducing the idea of an emergency care plan:
▶ Once the child has had a first life-threatening chest infection, or apnoea the family are often very eager to discuss with their lead paediatrician what happened on this first occasion. This is an opportunity to suggest making a family-held plan, to record in detail the child's potential symptoms and signs and specify the appropriate interventions.
▶ When the child starts to be left in the care of others—for example, at nursery or short break service families will accept the need for a written emergency plan including resuscitation plan which stays with the child.
▶ Deterioration in the child's condition can trigger a discussion of where things are going and what is likely to happen next.
▶ The death of another child the family knows may lead to these discussions.
When considering where and how to have these discussions the same principles as when ‘breaking the news’ apply (Scope- right from the start15)—that is, both parents present if possible, in a place where they feel comfortable, with privacy, respect for the child and enough time to explore their views.
The child or young person is usually not present in the first instance. Parents generally do not want to talk in front of their child, but may discuss it with him or her later.
It is usually helpful to have one other person present, ideally the child's key worker who will often be the community nurse.
Talking about their child's deterioration and possible death is of course difficult and distressing for parents. The paediatrician needs to be very sensitive and respectful. The discussions are much easier if the paediatrician already has a relationship with the child and family and can therefore speak with knowledge and experience.
As in any difficult communication it is essential to establish at the beginning of the discussions the parents' views. Sometimes they will be ahead of the paediatrician in considering what is right for their child and wanting to limit unhelpful interventions.16 Sometimes they will have avoided thinking about it and want to continue without a clear plan in case planning will some how hasten their child's deterioration.
Who brings what to the table?
▶ brings medical knowledge, experience of other similar cases and medical literature, knowledge of that child's medical problems and previous medical history. However, the doctor must keep within their knowledge and seek expert opinion from others—for example, respiratory paediatrician, intensivists;
▶ must be honest;
▶ must not be protecting resources but consider always the best interests of the child, within available and obtainable resources;
▶ must make time to listen, and to find out where parents are in their own minds, what their understanding is of the situation and their plans, hopes and fears for the future. You have to ‘start on the same page’.
▶ bring knowledge of the child and their perception of their child's quality of life;
▶ share their particular practical circumstances;
▶ share their aspirations, wishes and choices.
The community nurse
▶ may have prompted the discussion of a PRP;
▶ acts as an advocate for parents/carers if needed;
▶ will know what will practically work for that child's care in different settings and will arrange for any necessary equipment such as a suction machine or home oxygen;
▶ will take the plan into school and short break service to discuss with carers there.
Using the template to document the plan
It is often easiest to start with section 4 of the PRP template—that is, the emergency care plan for the next chest infection. A detailed description of the symptoms and signs the child shows when unwell and the plan for prompt interventions in the community such as oral antibiotics and increased respiratory physiotherapy which may prevent the escalation of care to more invasive levels.
Then the following can be explored:
‘What if the antibiotics are not helping?’
‘Would we want her to go on a breathing machine, go to the intensive care unit, or go home?’
‘What if he stopped breathing?’
‘Should we do mouth to mouth, put a tube into his wind pipe, cuddle him?’
‘What if her heart has stopped?’
‘Should we give her chest compressions, resuscitation drugs?’
‘Would it work?’
‘Should we try to bring her back if she has died?’
The doctor can sensitively suggest what they think would be the best plan of care, considering benefits versus burdens and listen to the parents' responses.
When recording the plan it is important to keep the description of appropriate interventions positive, clear and practical. The wording on the PRP template may help with this.
These phrases have also been helpful:
‘Invasive ventilation would not be appropriate, consider non-invasive ventilation.’
‘Ventilation should be considered if the child’s condition is likely to…'
‘Invasive ventilation should be considered, discuss with intensive care paediatrician.’
‘More aggressive resuscitation is not appropriate.’
PRP not do not attempt resuscitation
DNAR forms are not very helpful in this client group. Those used in paediatric units are often adapted from an adult form and may require a parent signature. They often contain legalistic jargon such as ‘I/we, the undersigned’ and abbreviations such as ‘CPR’. Their tone can be inappropriate when the doctor needs to convey sensitivity and openness. The model paediatric DNAR form and guidance notes on the resuscitation council web site are clear that agreement with the child and parents/guardian is required but not their signature nor any fixed review date.17
‘Allow natural death’ has been suggested as an improvement in wording,18 but it is still an ‘all or nothing’ system. The child is either for full cardiopulmonary resuscitation or no resuscitation at all. However, disabled children tend to be at risk of respiratory not primarily cardiac arrest, and often it would be appropriate, and certainly easier for families to accept, for the child to have a level of resuscitation such as airway management and a trial of bag and mask ventilation. Parents may be sure that they do not want their child to be subjected to endotracheal intubation or go to the paediatric intensive care unit but they may fear that a DNAR order will mean that staff will just stand at the end of the bed watching their child die.
A PRP is a more positive approach, emphasising what should be done rather than what not to do. The PRP can support a full discussion of all the options, be personal to the child and change over time as the child's condition changes. It forms part of the end of life care plan.19,–,21
Needs of the child and family
▶ to be treated with respect and sensitivity;
▶ to have as much power and choice as possible;
▶ to understand all the options;
▶ to be helped to make the best choices for their child by someone they know and trust;
▶ the peace of mind knowing that everyone will know what is right to do and will do it;
▶ to know what may happen and what to expect.
Needs of the nursing team/caring professionals
▶ as much detailed information as possible on what may happen, and the symptoms and signs which indicate a deterioration;
▶ clear, unambiguous instructions on what to do;
▶ whom to call and when;
▶ confidence that they are doing the best for the child and working as part of a wider team and in partnership with the family.
When paediatrician and family do not agree
It must be emphasised that a PRP is the consultant paediatrician's medical care plan for that child. It must be a good plan of care which they can stand by as good practice. It is not just an endorsement of the parents' wishes. A plan can be quickly drawn up when both parents and paediatrician agree on the appropriate levels of intervention for the child. Sometimes the paediatrician can compromise and agree to a plan allowing a greater level of intervention than they believe is ideal in order to maintain partnership working with the family. Over time as the caring relationship and trust develops between paediatrician and family and the child's condition deteriorates, a less invasive plan can usually be agreed. There is, however, usually a point beyond which a paediatrician cannot compromise. They cannot agree and sign a plan which in their opinion subjects the child to inappropriate, burdensome treatments and prolongs suffering.
Occasionally the paediatrician and parents will not be able to agree a PRP. In that case the paediatrician will write their views in the case notes in the usual way and the family will continue to state their views to the emergency medical teams on each emergency occasion. On rare occasions the best care plan for a child will need to be decided in court.
Religious and cultural issues
It may be more difficult to have discussions about limiting intervention with families of some cultures and faiths, or medical staff may be more reluctant to broach the subject. However, the PRP is a positive care plan and our experience has been that parents and carers of all faiths are glad to have a family-held care plan and see it as a way to ensure prompt and appropriate care for their child in all settings particularly when professionals in an emergency situation may not know their child.
The choices checklist
This may include:
▶ preferred place of death;
▶ preferences about organ donation (which may or may not be feasible or indicated);
▶ family wishes regarding postmortem examination (autopsy);
▶ preferences for care of the body, and funeral.
These choices need to be considered together with the medical care plan as one may preclude the other.
Some families prefer to remain focused on their child living even though they accept that medical interventions are limited to some extent. They may have a PRP only.
Others will be willing to discuss and document their wishes and choices regarding their child's death. We use a separate ‘choices’ document22 and an information prescription23 for resources to support these discussions which the child's paediatrician and key worker go through with the child and family over a length of time. We find the booklet ‘facing the death of your child’24 particularly useful.
Talking to the young person themselves
In many cases the child or young person will have extremely limited communication, however wherever possible the young person's views should be considered when making a PRP and they may wish to sign the plan to emphasise their participation.
How can choices be phrased?
▶ “When you're ill next time, what do you want to happen?”
▶ “Would you prefer to come in to hospital or stay home?”
▶ “Who do you want to look after you?”
The preferred priorities for care document25 has been piloted with adults. It can be adapted to aid talking about and documenting a young person's views.
An advanced directive can be made with a young person aged 18 years or more.26
PRPs and emergency services
There is always the possibility that a child in the community will develop unforeseen symptoms and require paramedic support. Children with very high medical needs including airway and secretion clearance problems, and those at the very end stages of a neurodegenerative condition continue to attend school and short break units. There may or may not be nurses on site. Staff will always need to be able to call emergency medical services for urgent support and this needs to be specified in the PRP. In the East Midlands, paramedics will follow a child's PRP as long as it has been registered with their end of life registration system. PRPs can also be registered with NHS Direct and the out of hours general practitioner service.
No fixed review date
The PRP does not time expire. Children with severe neurodisability can continue in an extremely frail condition for many years. However, as with any other medical care plan, the medical team should always be sure that the plan remains appropriate, and should consider it whenever the child is reviewed, but it is not necessary to discuss it with the parents at every visit. Parents/guardians do not want to keep discussing their child's death unnecessarily.
As the child's condition changes the PRP may well need to change. Any changes must be agreed with the parents and the new plan signed and dated by the consultant, and redistributed.
Distribution of the plan
Once the PRP is completed and signed it is taken out to the family by the community nurse. Such a sensitive document should not arrive in the post. The community children's nursing service also takes the plan out to school and short break unit and liaises with nursing staff in those locations to ensure there are no barriers to the care plan being followed.
Ideally the PRP is always with the child in their personal care plan folder—for example, the blue family file which is part of the ‘early support’ materials27 is the ideal place for it. However, it is useful to have backup copies at the front of all the case notes for the child in each care setting they use. We also have a PRP flag on the hospital computer system, a copy on the child's electronic record and a back up copy in the paediatric emergency department.
When the plan is changed it is vital that all the copies are changed. Usually the child has a named nurse or carer in each setting who will be responsible for replacing the PRP. Old plans must be scored through with two black lines and marked as out of date, and filed in the case notes.
Legal status of the plan
The PRP is:
▶ not a legal contract,
▶ not advance directive/living will,
▶ a medical care plan,
▶ signed by the consultant,
▶ signed by the parents/legal guardian if they so choose.
If parents/guardian do not sign the PRP, it is best to have another member of team sign to say that the plan was agreed with the family on a certain date.
The parents/guardian can change their mind at any time. However, the medical care plan remains the plan recommended by the child's consultant paediatrician until that consultant rewrites it. In practice, if the parents change their mind—for example, during an acute deterioration in the child's health, they can sometimes be persuaded to consider again the plan they agreed to when they were in a less stressful situation. Sometimes, for example, in the absence of senior staff or doctors and nurses who know the child and family well, it will be best to follow the parents' wishes, at least until review with their consultant and key-worker can be arranged.
The system can be piloted by the neurodisability and paediatric neurology teams. Through familiarity in use by nurses and trainee doctors in hospital the PRPs will become recognised as useful. Emergency department staff, and particularly community children's nurses, and even families of children with life-limiting conditions will start to request PRPs for patients.
Implementation of the system has been greatly helped by the support of the medical director of the East Midlands Ambulance Service. Also through the East Midlands Children's Palliative Care Network the PRP has been adopted by all the children's palliative care teams across the region, including the local children's hospice. It has been helpful to have a standard format which can be recognised by care teams anywhere in the region.
PRPs and the child death review process
The value of having a PRP in the home has been particularly highlighted since the child death review process became mandatory in the UK from April 2008. Its purpose is to protect children by collecting standard information about all deaths in childhood and reviewing that data locally and nationally. Each district now has a child death overview panel which reviews all deaths in childhood (under 18 years) in the local area. There are also local rapid response teams to investigate unexpected child deaths. These include paediatricians, social workers and police. An unexpected death is defined as ‘the death of a child that was not anticipated as a significant possibility 24 h before the death, or where there was a similarly unexpected collapse leading to or precipitating the events that led to the death’.28 29
Local safe guarding boards have put systems in place to alert the rapid response team whenever a child dies. Ambulance staff may be under instruction to take all children's bodies to the local hospital emergency department for postmortem examination and the place of death may be made a crime scene. A PRP in the home and in the child's medical records provides written confirmation that the child is known to be at risk of a life-threatening event and therefore helps the rapid response team to act appropriately.
Feedback from users
When PRPs were first implemented in Nottingham there were questions on the back of the template for the doctor to ask the parents at the time of making the PRP and return to a central audit file. The parent's responses were recorded on the back of 10 of the first 15 PRPs made.
How did you feel when making the PRP?
It was ok – 3
It hurt a bit – 2
It was very bad – 5
I'm glad I did it – 9
I did not mind – 1
Parents shouldn't be asked such things – 0
Families whose child was still living were sent a questionnaire 1–20 months after a PRP was made 7/10 were returned completed
How easy was it to complete the plan?
Very easy – 0
Quite easy – 3
Quite difficult – 3
Very difficult – 1
▶ ‘Helpful to discuss the options’.
▶ ‘Reassuring to know what will happen and who to call’.
▶ ‘It's important that everyone knows what to do’.
▶ ‘Don't want to make decisions with doctors who don't know my child’.
▶ ‘It feels like a positive statement of what treatment will be given rather than a negative statement about what will be withheld’.
▶ ‘Yes it is very helpful to have this in place so everyone knows what to do and the pressure is taken away’.
Feedback from community nurses after three children with PRPs died at home and one in hospital.
▶ ‘Because everyone knew what had been agreed, we all felt we were doing the right thing’.
▶ ‘The parents knew what to do. It allows the nurse to let them do it’.
▶ ‘I felt a lot more comfortable. I had the consultant's words there. Because I was comfortable and didn't need to do anything else the mother was comfortable’.
▶ ‘We sent her in and the hospital team followed the plan, everything was excellent’.
A PRP is a positive approach to care planning for disabled children with life-limiting and life-threatening conditions. The system helps the paediatrician to share information in a timely way and plan end of life care in partnership with parents.
The authors are very grateful to Dr Pam Hardy and Dr John Stephenson, medical advisors to the East Midlands Ambulance Service for their help and support with the practical implementation of the PRPs. The authors are also indebted to the following colleagues for their help in the development of the PRP template and its implementation: Dr Liz Marder, Dr Jane Williams, Dr Frances Neenan, disability paediatricians; Dr Gabby Chow, paediatric neurologist; Dr David Thomas, respiratory paediatrician; Dr Stephanie Smith, paediatrician, general and emergency department and Ms Val Bird, family support officer. Stacey Stevens, medical secretary, produced the clerical process checklist and information flyer.
Personal resuscitation plan for child / young person
This individual plan for resuscitation is to use instead of “DNR orders” as part of a child or young person's palliative care, where they have a Life Limiting Condition or Life Threatening Condition (1). It can form one part of an agreed “End of Life Plan”.
The Personal Resuscitation Plan (PRP) may be most effective when drawn up by child / young person and their parents / guardian with a doctor who they know and who has known the child e.g. before they became so ill. This will not always be possible, but the PRP should not be the first thing mentioned when meeting the child / young person or family for the first time.
Circumstances will vary, from an intelligent, well, 14 year old with a diagnosed incurable life-limiting condition to a child in deep coma ventilated on PICU with a severe accidental traumatic brain injury. In all cases the child / young person's parent or if possible both parents or legal guardian will be involved in drawing up the PRP. In some cases, e.g. at the suggestion of the doctor or nurse and at the discretion of the parent / legal guardian, the child / young person may also be involved; depending on conscious level, maturity, emotional state, capacity to understand, previously expressed wishes, options available.
This plan is flexible and is mainly to empower children / young persons and their families, to affirm what choice / control they have. It will help the child / young person's and parents / guardian's communication with medical, nursing and other professional services.
Completing the form
The blank form can be used to discuss options with families in a less threatening way than a discussion of “DNR” orders.
The form should be gone through with the child / young person and their parents / guardian as appropriate, by a senior member of the team, such as a community nurse or consultant paediatrician, items clearly deleted and boxes filled in as needed. A senior doctor (usually a consultant who knows the patient and family) will sign and date the form, either at the time or later. The child / young person and / or parents / guardian can also sign but do not need to as they can over-ride this written plan at any time for any reason, i.e. they can change their minds and verbally ask for a different action e.g. more or less intervention.
As the plan can be changed at any time by the child / young person and parents / guardian there is no fixed review date, the form cannot “time–expire” any more than any other documentation of a discussion about therapeutic options in the patient's notes.
The form should not be photocopied as all copies need to be identified and cancelled if the plan is revised.
Section 2 – Background
The reason why the child needs a resuscitation plan.
Put the diagnoses and brief description of the patient's Life Limiting Condition or Life Threatening Condition in the box.
Section 3 (acute deterioration) and Section 4 (gradual deterioration) look similar. Sometimes the resuscitation plan will be different for a sudden deterioration, which may be due to an intercurrent illness or event, compared to a more gradual decline, as anticipated by the patient's diagnosis or underlying condition itself.
Put any anticipated circumstances in the boxes.
Carefully but clearly cross out all the interventions that are not wanted after discussion with the parents / guardian, and child / young person if appropriate. Use a firm black or blue pen, and make sure any corrections are clearly legible.
The same form can be used at home or in short break unit as in hospital, e.g. “mouth to mouth” in the community becomes “bag and mask” on the hospital ward. “Mouth to mouth” becomes “mouth to trachy” or “bag to trachy” for patients with a tracheostomy.
Fill in the boxes at 3.3 and 4.2. to say where, if anywhere, the child should be transferred and at 3.4 and 4.3 to say who should be called, e.g. parent and bleep children's community nurse if child is in short break unit or school, bleep community children's nurse if child at home; or if in hospital the cardiac arrest/emergency medical support team – ensuring that they are made aware of the resuscitation plan.
It may be appropriate to call 999 paramedic ambulance if child is outside hospital with uncontrolled symptoms. In which case the resuscitation plan needs to be registered with the East Midlands Ambulance Service (EMAS) and a copy of the registration form should be attached to the PRP.
Some families will have completed a ‘wishes and choices’ document which details other aspects of their child's ‘End of Life Plan’. A copy of this will be with the family and their key worker and may be filed in the main medical notes.
It is important to document who the plan has been discussed with and it may be helpful to record the family's understanding of the situation in Section 5.
The plan does not need to be reviewed at any fixed time but should be reviewed whenever the child's condition or circumstances change. It must be reviewed on discharge from hospital when consideration of where copies of the plan should be held is essential, Section 11.
Old versions should be crossed out with two bold single diagonal lines, on each page. Sign and date the crossing out.
If the child / young person has been involved in the discussions, usually with the parents / guardian's support, they can sign Section 9, to acknowledge this, if they want, but do not have to. Similarly the parents / guardian do not have to sign Section 8. If they agree with the plan verbally but do not want to sign it, then another member of the clinical team usually a senior nurse in addition to the consultant should witness that parents agreed with the plan and sign at Section 10.
The child's consultant must sign Section 7, even if the plan has been raised with the family by another senior member of the team.
Funding The authors are grateful to the National Lottery Fund for short-term funding for time for AW, to help develop paediatric palliative care in Nottingham.
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.
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