**7. Special considerations in paediatric palliative care**

Certain aspects of palliative care management of the child differ from that of the adult. Home care is generally preferred by the child and family [3, 52]. Research suggests that parents of children who die at home have less adverse psychological effects following the death of their child than those whose children die in the hospital setting [53]. The European Association of Palliative Care provides expected standards for paediatric palliative care and advocates for the provision of palliative care within the chosen setting of the child and family [54].

Whilst family are usually involved in the palliative care of every patient, the family unit is particularly central to paediatric palliative care. Parental presence is more frequent and their dual role as direct caregivers and legal guardians can contribute to more complex and emotionally fraught end of life decisions.

Consideration must also be given to siblings of the child who is receiving palliative care. The loss of a sibling can be devastating, and so too can the course of their sibling's illness and the series of events that has led to the decision to pursue palliative care. Feelings of isolation and distress can be compounded by an emotionally distracted and sometimes physically absent parent. Unresolved, these feelings may manifest as emotional or behavioural disturbances, disengagement from school, or psychosomatic complaints [55].

The lasting after-effect of the death of a child can be devastating and lifechanging for both parents and siblings. A robust bereavement care plan is important in the context as a form of preventative heath intervention.

## **8. Bereavement support**

A family's experience of the death of a child in PICU can have significant and long- lasting impacts on their bereavement journey [56]. Attention to supportive bereavement practices within an institution is critical to assuage lasting, pathological ill effects.

Bereaved parents have recommended many low-cost resources that can support other families going through the same process [57]. These include simple interventions such as provision of a private room, creation of photographic mementos, and direct assistance to parents after the death of the child.

It is impossible to standardise bereavement aftercare as every family will have an individual response. It should be routine practice to offer information and services. The family should be provided with written information regarding the practical aspects of the mortuary or post-mortem examination process, if applicable. Information regarding counselling or bereavement support groups should also be provided.

In our institution, we routinely have a meeting with bereaved families in the months following their child's death. This provides an opportunity for the family to ask lingering questions and for healthcare professionals to offer further bereavement support or identify the requirement for specific psychological support.

**23**

*Palliative Care of the Infant and Child in the Paediatric Intensive Care Unit*

Organ donation may be considered if criteria are met and if the family wishes for this. Donation may occur after brainstem death or in certain cases after death

Donation can be a difficult subject to discuss with the family and, family refusal, or reluctance of practitioners to broach the topic, can be barriers to organ donation in children. Prior studies have shown that families who did not consent to donation did so due to: religious or cultural beliefs; believing that the child had suffered enough; or feeling that the donation process was too lengthy [58]. It is important to remember the sensitive nature of these concerns when discussing organ donation with the family and to provide them with support during the decision- making

The donation process requires a significant work from the PICU team. They must engage with local or national organ donation coordinators and facilitate relevant investigations. The benefits of organ donation include improved quality of life for the recipient and potential beneficial effects on the bereavement process of

Palliative care in PICU is delivered by a multidisciplinary team in an effort to provide a holistic approach to address the needs of the child and their family. In addition to PICU medical and nursing staff, the team ideally includes the following

The physiotherapist facilitates interventions such as therapeutic massage, passive movements and positioning. They provide education for the family and

A clinical psychologist can assess and assist in the management of emotional or

Therapies such as, aromatherapy, massage, music and reflexology may improve

Involvement of the local pastoral care team can provide spiritual and religious support for family and staff caring for a child with life-limiting or terminal illness. Some families may wish to have their own faith leader

Medical social workers are key support for the parents. They will assist the family with planning, finances and minimising the impact on the patient's siblings. Some parents have difficulty accepting the need for palliative care for their child [36] and social work can refer them for specific psychological or

carers regarding patient transfers and respiratory care.

the patient's quality of life or psychological wellbeing [61].

behavioural disturbances in the child.

• *Complementary therapist*:

*DOI: http://dx.doi.org/10.5772/intechopen.97275*

has been confirmed using circulatory criteria.

**9. Organ donation**

process [59].

the parents [60].

staff members:

• *Physiotherapy*:

• *Psychology*:

• *Pastoral care*:

present on PICU.

bereavement support.

• *Social workers*:

**10. The multidisciplinary team**
