Working with children, young people and their families during palliation and end of life is a privilege; however, this is a specialised area of practice with complex areas for consideration from advance care planning and symptom management to bereavement and faith support. Together for Short Lives (TFSL) (2013) defines palliative care as:
‘An active and total approach to care, from the point of diagnosis or recognition throughout the child's life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on enhancement of quality of life for the child/young person and support for the family.'
Palliative care differs from end-of-life care (EoLC) (although the terms are often used interchangeably), which is specifically the care an individual receives in the last days, weeks and months of life, mainly focused (although not exclusively) on symptom management and care before, during and after death (Royal College of Nursing (RCN), 2020). Palliative care, however, can span years (dependent on the situation) and is important as a philosophy, putting parents and families at the heart of decision-making, ensuring care plans are made together (TFSL, 2013). Care plans need to be adaptable and flexible as they are likely to require adjusting to the needs of the child, young person or family (Pearce, 2017; TFSL, 2018). This holistic, all-encompassing definition is also used by the RCN (2018) in its competence guidance for the palliative care of children and young people.
Furthermore, TFSL (2013) outlines four different relationships of palliative care and curative treatment that are disease and treatment dependent:
These categories are helpful for care planning, care pathway selection and assessing the needs of the patient and family.
Incidence
There are more than 300 conditions affecting children and young people that are life-threatening or life-limiting (TFSL, 2013). The Royal College of Paediatrics and Child Health (RCPCH) (2018) has reported that the UK has one of the highest paediatric mortality rates in western Europe, with 5000 deaths of children and young people under 19 in 2012.
Although the majority of the deaths of these children and young people are caused by accidents, suicides and complications of birth or prematurity, the rates of death among children with chronic conditions still appears to be unusually high in comparison to other countries (RCPCH, 2018).
For some of these children and young people, their time spent requiring palliative care will be relatively short and immediate EoLC will be the priority; however, others may require palliative care, but be relatively well and able to live their normal life for months or years.
Caring for families
From the time of diagnosis or progression, parents, caregivers and patients are given a plethora of information in order to inform choice and provide care (O'Shea and Bennett Kanarek, 2013). Maintaining open communication can aid care provision, including choices around where care is provided, faith and cultural expectations and the wishes of the patient and family (Grinyer, 2012; O'Shea and Bennett Kanarek, 2013).
National Institute for Health and Care Excellence (NICE) guidance (2019) recommends that parents or carers should be given the option to discuss bereavement support, arranging funerals and care of the child's body after death. This should be sensitive and timely, dependent on the child or young person's diagnosis. It is also important to discuss faith and religion with families in the context of palliation and EoLC. This might be difficult for families, but it can also make the experience less stressful if the professionals providing care are aware of the customs and practices the family may wish for at this time (Gatrad, 1994). Parents may also need practical support with guidance on benefits, working arrangements and child care (NICE, 2019).
These discussions may form part of advance (or anticipatory) care planning. This is the formalised care plan made with the multidisciplinary team, family and child or young person that guides health professionals in their care of the patient. Advance care plans may be upsetting to make and may take several discussions and regular review as palliative care can be a variable process (TFSL, 2018; NICE, 2019). This can be particularly difficult if a family is choosing not to tell the child that they are dying (McConnell et al, 2016).
The role of the hospice
There has been a rise in the number of dedicated children and young people's hospices over previous decades and, with increases in medical capabilities, the likelihood is that the need for these will continue to grow (Kirk and Pritchard, 2012). Kirk and Pritchard (2012) explored the views of children, young people and their families. Hospices were found to provide care in which families were confident, enabling parents to rest and spend time with their other children. The young patients reported hospices provided time away from the family where they were able to engage in social activities. The picture was more mixed on the support of siblings, although the support of siblings who were bereaved was reported as highly beneficial. That said, Grinyer (2012) questioned the honesty of parental accounts of hospice services, highlighting the long-term relationship parents have with the services and their potential to be reluctant to give negative opinions for fear of seeming ungrateful.
Although, theoretically, hospices are for ongoing support during palliative care, families can find that there is a paucity of day-to-day support, with a focus on emergency and EoLC needs (Grinyer, 2012). Although there is an unquestionable need to prioritise families with acute needs and during times of crisis, this could suggest a need for increased capacity in paediatric hospice care.
Supporting colleagues
There are several entangled issues for nursing and multidisciplinary team members when providing palliative care and EoLC: maintenance of professional boundaries can be difficult, managing their own as well as a family's feelings of grief and loss, providing care that may not be part of their specialist expertise and supporting colleagues can all be practically and ethically complex (Maunder, 2006; McConnell et al, 2016; TFSL, 2018).
Nugus (2011:138) commented on the unhelpful nature of a self-sacrificing disposition and nurses' tendencies to prioritise the needs of patients over their own, leading to high levels of burnout in palliative care. However, due to the wide-ranging scope of palliative care as identified earlier, nurses and specialist services may be caring for a child or young person for many years, inevitably leading to emotional attachment (Maunder, 2006).
Thus, it is important to create an atmosphere of support, strength, openness, trust and appreciation in order to empower and enable caregivers (Nugus, 2011). Maunder (2006) discusses something similar, stating that the culture of the working community can contribute to emotional support and wellbeing. Maunder (2006) also discusses the need for protective behaviours in nurses and caregivers working in highly emotive areas, giving the example of dark humour, which bonds professionals in an understanding not shared with others. The importance of working environment, peer and organisational support were all discussed in McConnell et al's (2016) literature review, but so too was allowing time to grieve; they highlighted that heavy workloads can obstruct this, particularly in busy hospital wards.
Caring for children and young people can be an extremely emotive process and being kind, open and sensitive to the needs of yourself and your colleagues can promote a healthier environment in a stressful role.
End-of-life care
EoLC for a child or young person is the care provided during the last days and hours of life and includes caring for the child's body after they have died. This may happen in the child's home, in a hospice or in hospital. Ideally, this is a decision made in advance, with the family's and the child's or young person's wishes at the centre (TFSL, 2018). Below is a set of common physical signs and symptoms that a child or young person is likely to die within hours or days, highlighted in NICE guidelines (2019):
Although EoLC is more than symptom relief, it is helpful to know what may happen so that nurses are prepared to manage anything that may be distressing for the patient or family. It is also important to know if the child or young person has an advance care plan in place and, if so, what their wishes are at this point.
When considering clinical decision making for nurses caring for children at the end of life, Worthington (2005) identified four steps: