A Framework for the Delivery of Palliative Care for Children and Young People in Scotland

3. Guidance for Service Providers

1. Identification of all children and young people with palliative care needs

Identifying the number of children in your own area is important, as this will better allow you to analyse the gap in need between the total resources required against those already committed to palliative care.

There are a wide range of life-limiting and life-shortening conditions. Hain
et al¹⁶ have compiled a list of ICD10 diagnoses that have been judged by professionals working in paediatric palliative care to be life-limiting. The Hain list is drawn from admissions to children's hospices and referrals to specialist paediatric palliative medicine. The list can never be exhaustive, but it already encompasses the large majority of such diagnoses. Expansion of the list as new diagnoses become apparent is important and should be the basis for further studies. It is important to point out however, that not all of the children and young people who have these diagnoses will have palliative care requirements throughout their lives. Figure 5 illustrates this.

Figure 5

SCYPPEx, with the assistance of Information Services Division (ISD), has applied the Hain's criteria to the Scottish Mortality statistics. Appendix 1 gives tables with the number of children and young people who die each year with any of the diagnostic codes in the Hain's list. Approximately 130 children or young people die each year in Scotland with a recognised LLC or LTC and these children and young people must therefore have had end-of-life care requirements. This begins to identify some planning assumptions that NHS Boards across Scotland should take into account when planning palliative care services for this group.

These data provide information on the incidence of death from life-limiting or life-shortening conditions but do not provide information on the prevalence of the number of children who are living with these conditions and therefore may be require palliative care. The support needs system may provide prevalence information in the future for children with complex needs but is not yet universally used across Scottish Health Boards. It is recommended that Health Boards consider prospective data collection on hospital, hospice and community care requirements for palliative care for all children and young people within their areas to develop a better understanding of prevalence.

Identifying the trigger for palliative care is often challenging within the paediatric setting. The following methods may be employed to help you identify these patients.

Prognosis. Using prognosis only to identify children with palliative care needs can often be challenging. Some studies have found that prognostication can often be inaccurate and professionals therefore are reluctant to give a poor prognosis or identify children as 'palliative'. The ACT groups of definitions also provide a useful descriptor of the child's anticipated journey but the ACT group may change as the child's condition progresses. ACT groups only identify possible palliative care needs when applied to a cohort of children who are currently living.

The surprise question. Some clinicians find it easier to ask themselves "Would you be surprised if this patient were still alive in 6-12 months?" - An intuitive question integrating co-morbidity, social and other factors. If you would not be surprised, then what measures might be taken to improve their quality of life now and in preparation for the dying stage. The surprise question can be applied to years/months/weeks/days and trigger the appropriate actions. The aim is to enable the right thing to happen at the right time, e.g. if days, then begin an 'Anticipatory Care Plan' immediately. Some children and young people with complex health problems may require palliative care for long periods of time, therefore the question "Would you be surprised if this patient dies in the next 5 years?" may be more appropriate in deciding if your patient requires palliative care services.

Using ACT's four categories of life-limiting and life-threatening conditions is also useful in this process. ACT has described the conditions that result in life-limiting/life-threatening conditions within four broad groups. However, categorisation is not easy and the examples used are not exclusive. Diagnosis is only part of the process, the spectrum of disease, severity of disease and subsequent complications and the impact on the child and family also need to be taken into account. They are useful to ensure that service provision encompasses all families who may require palliative care support. They outline which conditions might be included, and which therefore are excluded from palliative care services. Those that are not encompassed by the categories may be better met through provision via other pathways.

The ACT categories are as follows:

Category 1

This group includes life-threatening conditions for which curative treatment may be feasible but can fail. Here, access to palliative care services may be necessary when treatment fails or during an acute crisis, irrespective of the duration of that threat to life. On reaching long-term remission or following successful curative treatment there is no longer a need for palliative care services. Examples: Cancer, irreversible organ failures of heart, liver, kidney.

Category 2

This group includes conditions where premature death is inevitable, but where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities. Examples: Cystic fibrosis, duchenne muscular dystrophy.

Category 3

Here, progressive conditions without curative treatment options are included, where treatment is exclusively palliative and may commonly extend over many years. Examples: Batten disease, mucopolysaccharidoses.

Category 4

This group includes irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and the possibility of premature death. Examples: Severe cerebral palsy, multiple disabilities such as following brain or spinal cord injury, complex healthcare needs with a high risk of an unpredictable life-threatening event or episode.

2. Breaking bad news

Plenty of time should be made available for a face-to-face discussion at the time of diagnosis of a LLC or LTC and whenever there is a significant deterioration or change in their condition. Children or young people and their families should be treated with sensitivity and honesty, at all times and given ample opportunities to ask questions at the time and subsequently. A place should be provided that ensures complete privacy where child or young person and their family can be together to receive the news. If not possible, every effort should be made to ensure that another relative or a friend is present to support the parent hearing the news. In some instances the child or young person and family may not wish to hear the information at the same time and opportunities to speak separately should be offered where appropriate.

Helpful written material should be provided as a supplement to, but in no circumstances should this be thought of as a substitute for, direct communication. Information should be conveyed in readily understandable language, using an interpreter where necessary. The needs of the child or young person for information appropriate to their age and understanding should also be taken into account.

3. Assessment of care needs and multi-agency care plan

Children and families should have their needs assessed as soon as possible after diagnosis or recognition. Working with the child's clinical team and in partnership with the family, completion of an Anticipatory Care Plan (ACP) should be implemented. This holistic and multi-agency approach should be used to avoid the need for multiple assessments.

The child or young person should be kept in focus and involved in the process and care should be taken to include the needs of fathers and siblings. Individuality and ethnicity should be respected.

The Information should be gathered and recorded systematically on the ACP to ensure consistency ensuring straightforward, jargon-free language being used. The issues of confidentiality and consent should be addressed with the family to sharing the information within the ACP with their child's multi-disciplinary team. Assessment information gathered should be made available to the family.

Systems should be in place to support communication between tiers of service, e.g. e-palliative care summary, CYPADM form (Children and Young Peoples Acute Deterioration Management). Where a child is cared for in tertiary care, systems should exist to ensure that the child or young person's relevant secondary care paediatric services are kept informed of any changes.

The roles of the lead paediatric consultant, and that of the community children's nurse and/or specialist outreach nurse allocated to the child and family should be clearly defined. Those undertaking the ACP should have appropriate skills and local knowledge to complete this.

Every family should have a lead professional/key worker to co-ordinate the plan and information should be available for the child and family. The plan should include the whole family and take account of:

• Provision for the child's symptoms and personal care
• Psychological care for child, siblings and parents
• Access to benefits and financial assistance
• Access to flexible short breaks
• Access to social care and support
• Access to play and social activities
• Access to education
• Protection of carers' health
• Access to aids and equipment
• Access to appropriate housing
• Access to appropriate transport
• Transition to adult services.

The child and family's needs should be regularly reviewed and a new care plan agreed to take account of the changes. The family should be able to request a review at any time. Services and professionals should regularly review their effectiveness in co-co-ordinating and delivering care plans. Families will need extra support at key times, particularly following hospital admission, a change in the child's condition or in times of family crisis.

4. Planning discharge

Children and young people's services must ensure that any child or young person identified with palliative or end-of-life care needs should have a comprehensive multi-agency care plan in place prior to discharge. This plan should include specific specialised care relevant to that child or young person's condition, for example: A care plan for home ventilation, enteral feeding or an anticipatory care plan for symptom control.

A lead clinician (normally the child's lead paediatric consultant) should be identified at the discharging hospital and within their local community, particularly if the child or young person is to receive shared care closer to home. For children and young people discharged directly from tertiary care to home or hospice there should be an identified lead consultant at both the tertiary and secondary hospitals, as any acute management issues will normally be managed in the local secondary care service.

The community nursing team should be notified as soon as possible and invited to meet with the child and family and their clinical specialist team. A clear plan for discharge should be agreed with the child, family, hospital and community services. A lead community nurse should be identified before discharge and the child's GP should be invited to become involved in developing clear plans for shared medical care. Essential adaptations to the home and the provision of necessary equipment and supplies should be arranged before discharge.

Training, if required, should also be provided for families and carers before discharge. Clear lines of communication should be agreed with the family and a key worker/lead professional identified to co-ordinate continuing care and ongoing service provision.

Children and young people's services should ensure that all children and young people with any condition identified as palliative or end-of-life care needs are placed on the primary care palliative patient register and fully supported by a multi-disciplinary team.

5. Recognition and planning for end-of-life care

Predicting the time when a child is likely to move into their end-of-life phase is not easy. For some, there may have been a series of peaks and troughs in the child's condition over a number of years before this phase is identified. It is not uncommon for children to return to greater stability following a period of serious decline. Nonetheless timely recognition is imperative.

The realisation that death is imminent may be quite sudden, possibly only hours or days before death. The families of these children may have had little time to acknowledge this reality or plan for the death. For others, however, movement into the end of life phase may occur gradually over a period of months or be even clearer when there has been a decision to stop all life-prolonging treatment. The family will then be aware that the child's death is inevitable and will have some time to plan.

Professionals working with these children and families should be honest and open about the probability that the child's life is nearing an end. Families should not be given false hope and should be allowed to plan for death. The term 'good death' is difficult to define, as it is personal to each individual, however, it is important that the child and family should be able to exercise choice. It is therefore advisable for an Advanced Care Plan to be agreed, based on the child or young person and their family's needs and wishes and available resources.

Discharge planning for children and young people with palliative or end of life care needs should follow the NHSScotland (2010) Care Pathway for Child or Young Person with Palliative Care Needs in Hospital developed by the Nurse Consultant for Children and Young People's Palliative Care (West of Scotland) (Appendix 2). This provides a clear pathway for discharge from the hospital setting of a child or young person in the end-of-life phase to the home or hospice.

Completion of a CYPADM form should be discussed and agreed with the family and child or young person, where appropriate. This should be documented in the case notes and communicated by the lead clinician to all relevant professionals within care settings and emergency services. A copy of the CYPADM form should be laminated and given to the child or young person on discharge from the hospital.

The community nursing teams should facilitate 24-hour access to pain and symptom control, including delivering medication from a just-in-case box as prescribed in the advanced care plan for use when required. Staff managing the control of symptoms should be suitably qualified and experienced in this area. Place of death should be a choice supported by adequate resources whether this be hospital, hospice or home.

Emotional and spiritual support should be available to the child, young person and their families and they should be supported in their choices and goals for quality of life to the end within local resource availability.

Contact details and agreement on whom to phone for advice and support should be given to the family and those of the professional who should be contacted to verify and certify death.

6. Organ donation

In order to understand the wishes of the child and the family, conversations about organ or tissue donation should take place prior to death. Many parents and families derive a great deal of comfort from knowing that through donating their child's organs or tissue, other people's lives were saved or transformed through donation.

If children, families or healthcare professionals feel that organ or tissue donation should be considered, then this should be discussed with the lead paediatric consultant who, in turn, may wish to contact the local specialist nurse for organ donation. The organ donation specialist nurse will be able to provide individual information and support for children and families as well as advice, training and support for staff.

Further information on organ and tissue donation is available via www.organdonation.nhs.uk or by contacting NHS Blood and Transplant's Scottish Headquarters on 0300 1239209. Even if donation is not possible, it may be helpful for families to know that this option was explored.

7. Care after death

Following the child or young person's death the family should be given time and privacy to be with their child. Parents should be supported to feel in control of events, before, during and after death and be able to make their own choices. It is imperative that these choices are captured within the Advanced Care Plan at an earlier stage in preparation for this event.

The general practitioner should be advised of the death of the child or young person, within 24 hours of occurrence if death occurs in hospital or hospice. The community nurse will provide practical advice and written information to the family about removal and care of their child's body, official procedures and entitlements. The needs of siblings and grandparents should be considered and included at the time of death and immediately afterwards. If required, fully informed consent should be obtained from the parents for a post mortem.

Bereavement support should be offered for as long as the family needs and the bereavement needs of siblings should be recognised and support provided. The staff involved in the child or young person's care should also be provided with support if required.

8. Transition

It is recommended that individual Health Boards develop local pathways for transition of young people with palliative care needs to appropriate adult services.

The report from SLWG 6 in Living and Dying Well - Building on Progress recommends that each NHS Board, within the context of community planning, should develop clear and cohesive arrangements to facilitate transition from children's to adult services, and identify a lead professional to hand over to a named professional in adult services. The lead professional must have a working knowledge of the different systems and processes in other agencies, including social work departments and the voluntary sector and make these known to the named professional in adult services.

The planning and delivery of these transition services should reflect the core standards identified within ACT The Transition Care Pathway (2007)¹⁷ and the RCP Think Transition policy document¹⁸.

9. Education and training

It is recognised that many staff provide continuing care for children and young people living with LLC and LTC in acute and community settings and that with the advances in medical care and technology only a small minority of these children or young people will enter a palliative or end-of-life phase. However, it is important that all staff involved in caring for these children, young people and families have access to specialist advice and education and training, that will provide them with the appropriate knowledge, skills, competence and confidence to deliver palliative and end-of-life care when and where it is required.

Over the last three years, a small group of practitioners including those in the voluntary sector and the nurse consultants for children and young people's palliative care in Scotland have played a key role in raising awareness of children and young people's palliative care needs, sharing expertise and providing education and training opportunities for staff throughout Scotland.

The development of the Paediatric Resuscitation Policy and CYPADM by SCYPPEx and the subsequent launch across Scotland in 2011, with training provided for staff in partnership with NHS Education for Scotland (NES) is one example of how education and training can be delivered.

Further development and implementation of a range of education and training for different groups of health professionals and staff from other agencies is now required.

The sharing of skills and expertise and the opportunity for dialogue and sharing of educational opportunities between healthcare teams and other agencies can only enhance competence and confidence in staff and promote collaborative working.

If the outcomes and objectives of this framework are to be achieved in every Health Board then the provision of ongoing education and training, for specialist and generalist staff across all care settings in Scotland is essential.

The development of clinical leadership and an educational infrastructure for children and young people's palliative care and a national plan for facilitating and delivering education and training to all staff throughout Scotland is now required to ensure that there is, in the future, equitable access to high quality palliative and end-of-life care for children and young people throughout Scotland.