**6. Re-direction of care on PICU and withdrawal of life-sustaining therapies**

The re-direction of therapeutic goals in PICU requires careful planning, knowledgeable staff and high-quality communication. Following the decision to prioritise the patient's comfort, certain invasive therapeutic measures are electively ceased. Staff must anticipate symptoms or problems that may arise during this period and support the family in this stressful time.

#### **6.1 Withdrawal of ventilatory support**

The initiation of invasive ventilation is prompted by severe physiological derangement or the inability of the patient to protect the airway. Mechanical

**21**

treatment.

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

transfer, must be communicated to both family and caregivers.

bated patients to facilitate discharge to the ward or home [49].

Withdrawal of ECLS will be a palliative measure in these cases.

the ECMO circuit, or surgical removal of ECMO cannulae.

family conferences during the patient's stay in the PICU.

**6.2 Withdrawal of extracorporeal life support**

ventilation may be provided via an endotracheal tube or tracheostomy and is typically anticipated to be a temporising measure until clinical stability is restored. In cases where it has been decided that invasive ventilation is no longer in the child's best interest, the process of withdrawal of ventilatory support

PICU staff must be familiar with the appropriate incorporation of extubation into the end of life care. Post-extubation symptoms such as dyspnoea, secretion retention and agitation must be anticipated and managed appropriately [44]. Not every extubation will be a terminal event and staff should anticipate that the child may survive for a period of hours or days following the withdrawal of ventilatory

There should be clear communication with the family around this time. It is essential to explain the practicalities of tracheal extubation, the anticipated patient response to extubation and to decide upon a plan for symptom management in the

On occasion, PICU may facilitate the withdrawal of ventilatory support outside of the intensive care unit. The provision of choice in location of end of life care is increasingly advocated [45] and the child or family may express a wish to die on a ward, in hospice or at home [46, 47]. Meticulous interdisciplinary planning is required if an out-of-hospital setting is chosen [48]. The practicalities of transferring a dying child, with the potential for terminal physiological instability during

In some cases of life-limiting illness, we have performed tracheostomy in intu-

Extracorporeal life support (ECLS), or extracorporeal membrane oxygenation (ECMO), provides mechanical circulatory support to children with cardiac or respiratory failure refractory to maximal conventional medical therapy. Although ECMO outcomes have improved [50], a number of patients will have persistent cardiac or respiratory dysfunction and cannot be successfully liberated from ECLS.

Withdrawal from this highly technical life-sustaining therapy requires collaboration with our surgical colleagues who may facilitate' bridging' or separation from

Patients who have had ECLS for a period of time may have received prolonged high dose benzodiazepine and opioid infusions [51]. Issues such as tolerance and dependence should be anticipated as the patient may survive for a period of time

Some patients may be able to transition to the ward or to their home for their final days. This period of transition should be managed with care due to the potential for creation of additional distress for the family. The family may be concerned that the patient will not get sufficient attention on the ward and can be upset at the realisation that discharge from PICU is a definite move away from active medical

The palliative care team should be involved in this process and can provide continuity of care for the patient on the ward or, refer to community- based services. Ideally, they will already have been involved in the care of the patient and attended

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

commences.

support [44].

period following extubation.

after ECMO decannulation.

**6.3 Transition to the ward or home**

#### *Palliative Care of the Infant and Child in the Paediatric Intensive Care Unit DOI: http://dx.doi.org/10.5772/intechopen.97275*

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

sionals should provide measured and consistent communication.

the family during this difficult time.

**5. Advance care planning**

child's illness progresses.

**therapies**

support the family in this stressful time.

**6.1 Withdrawal of ventilatory support**

may take place during a challenging and exhausting time for the family, and profes-

Key to collaborative decision-making is a steadfast and trusted relationship between the family and those involved in the child's care. It is important to recognize that not all families will want to lead the decision-making process, particularly regarding end of life care [7]. We see a spectrum of preferred decision- making roles with some families expressing a preference for delegation of decisions to clinicians, and others wanting a more prominent role in the process [41].

Family-centred care should also focus on maintaining the dignity of the family throughout the child's PICU stay. The physical and cultural environment in PICU exerts a contextual influence on the delivery of care [42] and, even simple institutional efforts can have a profound impact on the family. Forgoing visiting restrictions to allow parental presence at the bedside, provision of family accommodation and simple measures such as covering the cost of car parking and meals will support

Children and their families should be provided with support in developing an Advance Care Plan (ACP) which is reflective of their wishes concerning management of their illness and end of life care. An ACP will allow families and care providers to plan for the management of both reversible deteriorations in health and irreversible changes at the end of life. This individualised approach to care has

The ACP should be documented in the patient's medical record where it can be shared amongst all caregivers. The family and medical team may wish to update the ACP to reflect redirection of care and reprioritisation of treatment goals as the

Ideally the ACP will be in place before the child is referred to PICU, but this is not always feasible, particularly in the case of an acute deterioration. PICU medical staff should be aware of any ACP that is in place and, if there is none, provide honest and clear communication to families regarding the perceived benefits, risks and invasiveness of critical care interventions [23]. This discussion can be particularly distressing for the family and all members of the multidisciplinary team will be

In certain circumstances, a child may have an antenatal diagnosis of a lifelimiting condition and ACPs are devised with the parents in antenatal period.

The re-direction of therapeutic goals in PICU requires careful planning, knowledgeable staff and high-quality communication. Following the decision to prioritise the patient's comfort, certain invasive therapeutic measures are electively ceased. Staff must anticipate symptoms or problems that may arise during this period and

The initiation of invasive ventilation is prompted by severe physiological derangement or the inability of the patient to protect the airway. Mechanical

**6. Re-direction of care on PICU and withdrawal of life-sustaining** 

the potential to improve patient quality of life and satisfaction [43].

invaluable in providing them with support in their decision-making.

**20**

ventilation may be provided via an endotracheal tube or tracheostomy and is typically anticipated to be a temporising measure until clinical stability is restored. In cases where it has been decided that invasive ventilation is no longer in the child's best interest, the process of withdrawal of ventilatory support commences.

PICU staff must be familiar with the appropriate incorporation of extubation into the end of life care. Post-extubation symptoms such as dyspnoea, secretion retention and agitation must be anticipated and managed appropriately [44]. Not every extubation will be a terminal event and staff should anticipate that the child may survive for a period of hours or days following the withdrawal of ventilatory support [44].

There should be clear communication with the family around this time. It is essential to explain the practicalities of tracheal extubation, the anticipated patient response to extubation and to decide upon a plan for symptom management in the period following extubation.

On occasion, PICU may facilitate the withdrawal of ventilatory support outside of the intensive care unit. The provision of choice in location of end of life care is increasingly advocated [45] and the child or family may express a wish to die on a ward, in hospice or at home [46, 47]. Meticulous interdisciplinary planning is required if an out-of-hospital setting is chosen [48]. The practicalities of transferring a dying child, with the potential for terminal physiological instability during transfer, must be communicated to both family and caregivers.

In some cases of life-limiting illness, we have performed tracheostomy in intubated patients to facilitate discharge to the ward or home [49].

#### **6.2 Withdrawal of extracorporeal life support**

Extracorporeal life support (ECLS), or extracorporeal membrane oxygenation (ECMO), provides mechanical circulatory support to children with cardiac or respiratory failure refractory to maximal conventional medical therapy. Although ECMO outcomes have improved [50], a number of patients will have persistent cardiac or respiratory dysfunction and cannot be successfully liberated from ECLS. Withdrawal of ECLS will be a palliative measure in these cases.

Withdrawal from this highly technical life-sustaining therapy requires collaboration with our surgical colleagues who may facilitate' bridging' or separation from the ECMO circuit, or surgical removal of ECMO cannulae.

Patients who have had ECLS for a period of time may have received prolonged high dose benzodiazepine and opioid infusions [51]. Issues such as tolerance and dependence should be anticipated as the patient may survive for a period of time after ECMO decannulation.

#### **6.3 Transition to the ward or home**

Some patients may be able to transition to the ward or to their home for their final days. This period of transition should be managed with care due to the potential for creation of additional distress for the family. The family may be concerned that the patient will not get sufficient attention on the ward and can be upset at the realisation that discharge from PICU is a definite move away from active medical treatment.

The palliative care team should be involved in this process and can provide continuity of care for the patient on the ward or, refer to community- based services. Ideally, they will already have been involved in the care of the patient and attended family conferences during the patient's stay in the PICU.

Discharge should be planned and occur in daytime hours as much as is feasible. All members of the multidisciplinary team should be aware of the planned discharge and give advice with regards to ongoing care.
