**3. Communication**

*Suggestions for Addressing Clinical and Non-Clinical Issues in Palliative Care*

of the patient.

blood transfusion.

nium bromide.

dyspnoea or distress.

to the PICU team. *Case 1:*

*Case 2:*

in her final days. *Case 3:*

discharged to the ward.

ferred back to the oncology ward.

*2.3.2 Dyspnoea and secretions*

administered. Although this could be seen as controversial in the dying patient, justification is based on whether transfusion has the potential to improve the patient's symptoms [27]. Catastrophic bleeding, as may be seen in acute pulmonary haemorrhage, can be both a distressing and terminal event. Subcutaneous or intravenous morphine and midazolam should be administered in this scenario to ensure comfort

Dyspnoea refers to the subjective sensation of finding it difficult to breathe and, may be a particularly distressing symptom for the child and family. It is important to rule out treatable causes of dyspnoea in the dying child, such as pulmonary oedema, pleural effusion, anaemia and anxiety. Simple supportive measures that may improve the child's comfort include gentle suctioning, positioning and mouth care. More specific therapies such as bronchodilators and diuretics may be administered. Interdisciplinary discussion should take place regarding the relative benefits and risks of more invasive interventions such as pleural drain or

Excessive secretions are common in all stages of palliative care. Gentle suctioning and positioning to allow drainage can also be helpful here. Pharmacological measures for excessive secretions include hyoscine hydrobromide or glycopyrro-

When entering the terminal phase, secretions may pool in the upper airways and cause particularly distressing sounds, also known as the 'death rattle'. When secretions are linked with dyspnoea, administration of morphine or midazolam can be considered. Dosing intervals are based upon a perceivable change in the child's

To illustrate the role of paediatric critical care medicine in symptom management, a series of case vignettes are provided below. Each is a challenging case where symptoms have been difficult to optimise on the regular ward, necessitating referral

A 4-year-old with ALL who was referred from the ward team with severe chemotherapy related mucositis and painful dermatitis. His pain had been difficult to control despite using IV morphine boluses and regular clonidine. The patient was distressed and unable to take oral fluids. A ketamine infusion was commenced with a good improvement in patient comfort. This infusion was continued over a period of days until improvement was seen in his dermatological condition. The infusion was gradually weaned and discontinued, and the patient was suitable to be trans-

A 2-year-old with a terminal pelvic malignancy had invasion of her lumbosacral

A neonate with central respiratory depression, seizures and limb contractures was admitted to PICU for non-invasive ventilation. A palliative care referral was made, and gabapentin was commenced for central irritability. He was subsequently

plexus and severe neuropathic pain. Standard palliative analgesic regimens had been unsuccessful. An intravenous infusion of lignocaine was commenced with some improvement in her symptoms. An intrathecal catheter was sited, and infusion of opioids with local anaesthetic provided her with greatly improved pain relief

**18**

Communication plays a key role in the delivery of high-quality end of life care in PICU [28, 29]. In this highly technical environment, the discussion of diagnoses, interventions and prognoses must be delivered using language that the patient and family will easily understand.

When the clinical trajectory shifts and the goals of care are realigned to focus upon comfort measures, this can be a particularly stressful and disorientating time for the family. High-quality communication during this time can reduce the risk of stress-related disorders in the bereaved family [30].

As discussion shifts from procedure-oriented conversations to planning the initiation of palliative care, the PICU clinician may be out of their comfort zone [31]. Research shows that clinicians prefer to discuss technical medical issues rather than emotional issues pertaining to quality of life [32]. It is, however, important for us to recognize that by building an empathic relationship based on information sharing, we foster a supportive relationship with the family [33].

Family conferences are an essential communication platform when a child is undergoing palliative care in the PICU [34]. Members of the team and the family have the opportunity to discuss goals of care in the context of the patient's clinical condition and the family values. A trusting relationship can be built with the family and this can facilitate the transition from critical care provision to the delivery of palliative care.

Although clinicians attribute considerable importance to family conferences [35], communication with the family in PICU most frequently occurs at the bedside [33]. Regardless of location, every interaction with the family is an opportunity to build trust and understanding. The team may consider appointment of one reliable point of contact, such as a specialist nurse for the family. This will facilitate relationship building with the family and provide for consistency in communications [36].

The PICU team must be cognisant of the following barriers to effective communication that can exist: delivery of inconsistent messages regarding the care plan; time constraints; the stressful environment; and a deficit of communication training [37].

Communication strategies that have been shown to be improve the end of life experience for families in PICU include: participation of the family in decisionmaking; limiting the use of medical terminology; displaying honesty when a child has a poor prognosis and compassionately sharing family grief [38].
