**1. Introduction**

Although modern medicine has undoubtedly improved survival among children with life- limiting disease, there remains a substantial requirement for paediatric palliative care. Approximately 21 million children per year need the input of palliative care medicine [1].

Infants, children and adolescents who may benefit from a palliative approach to their care fall into four patterns of disease progression [2, 3]:


Paediatric Intensive Care has similarly seen the mortality amongst children decrease substantially in the last two decades to less that 5% [4]. With improved survival rates, we have also noticed an increasing need for palliative care in the management of the sequelae of chronic and progressive medical illness amongst our patients.

Palliative care in the Paediatric Intensive Care Unit (PICU) may therefore be used in the following contexts [5]:


Delivery of palliative care in PICU requires both acceptance by the child's family that their length of life will be short, and a holistic approach from a multidisciplinary team. A focus on symptom control and family-centred care at the end of a child's life may improve the experience of death for both patient and family unit [7]. We aim to facilitate a period of time for the family which will be associated with positive memories [8].

## **2. The role of PICU in symptom management**

'Relief of pain and other symptoms' is one of the domains of high-quality palliative care in the PICU [9]. The purpose of symptom management is to maximise comfort and improve quality of life for the child in their final hours, days or months [10]. Optimal management requires an understanding of the underlying disease process and anticipation of symptoms that may arise. Symptoms are particular to each individual patient and can vary substantially [11].

Studies show that bereaved parents have rated the management of end of life symptoms poorly [12] and it is therefore important to provide individualized care which is both tailored to the patient's specific symptoms, and acceptable within the broader context of their family.

Symptom management may be provided with non-pharmacological or pharmacological means. Although a constellation of symptoms may be seen in the child receiving palliative care, here we discuss problematic symptoms that may arise in PICU.

#### **2.1 Pain management**

Pain assessment and management is fundamental to good palliative care practice. Our goal is to alleviate pain and the fear that it garners in the child and family [13].

Pain is assessed using age-appropriate tools [14], and attention is paid to the impact of pain upon the family unit [15]. We initiate pain management in a manner that is similar to that on the ward, with adherence to the WHO analgesic ladder [16] and utilisation of opioids as the cornerstone of therapy. We employ non- pharmacological measures such as physiotherapy and cognitive behavioural therapy (CBT) in conjunction with pharmacological therapies.

**17**

*2.3.1 Bleeding*

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

We are often presented with patients with recalcitrant pain where alternatives to opioid therapy are sought. These patients may have developed opioid tolerance, side effects with increased doses or may have infiltrative or neuropathic pain that is

Despite the absence of convincing evidence for their efficacy [17, 18], adjuvant agents such as clonidine, ketamine and intravenous lignocaine [19, 20] may produce

Other specific pain therapies may also be employed for intractable pain or to mitigate against intolerable effects of analgesic agents. Peripheral nerve blocks can be used for discrete, well-defined areas of pain secondary to tumour infiltration [21] and, may encompass neurolytic methods for permanent pain relief. Spinal administration of opioids, local anaesthetics, baclofen or other adjuvants may also be used to good effect [22]. Involvement of specialties such as anaesthesiology, pain

Many children, regardless of age, will experience psychological issues at the end of life. PICU staff must actively seek and attempt to address these matters as research has shown that psychological issues at the end of life are often under recognised by staff [12, 23]. A clinical psychologist should be involved and can provide evidence- based interventions for emotional or behavioural symptoms [24]. Therapeutic interventions such as cognitive behavioural therapy and relaxation strategies are used in conjunction with pharmacological treatment for relief of

Although anxiety may be present throughout a life-limiting illness, it may be particularly pronounced at the end of life. The child may express a fear of death itself, or a fear of uncontrolled pain and suffering around the time of death [25]. Parental anxiety and fear can strongly influence this. Management is dependent upon the age and understanding of the child. Guided by the parents, a degree of open communication about their condition and provision of verbal reassurance may alleviate anxiety significantly. Conservative strategies such as relaxation, meditation, or music therapy are also beneficial. This complementary therapy can play a significant role in the provision of holistic care to patients and their families. If drug

therapy is deemed necessary, benzodiazepines may be useful anxiolytics.

pharmacy to allow rectal or buccal administration.

**2.3 Other symptoms and their management**

Cerebral irritability is occasionally a feature in the paediatric patient receiving palliative care. The child may be agitated and inconsolable. Reassurance, and the creation of a peaceful environment can be complementary to pharmacologic strategies. Gabapentin has been shown to be effective in these cases [26], but may not always be practical due to its enteral route of administration. Alternative drugs which may be utilised in cases of severe distress include; levomepromazine; clonidine; chloral hydrate and lorazepam. Formulations can be made specifically by

Thrombocytopenia, coagulopathy or local tumour effects may cause bleeding in the dying child. Simple measures can be utilised in the case of haemorrhage. The child can be nursed on dark coloured bedding. Tranexamic acid- soaked gauze can be applied to bleeding mucous membranes and adrenaline- soaked gauze can be applied directly to bleeding points. Occasionally, blood transfusion may be

medicine and neurosurgery can support the institution of these therapies.

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

poorly responsive to opioids.

**2.2 Psychological support**

distressing symptoms.

a significant improvement in pain.

We are often presented with patients with recalcitrant pain where alternatives to opioid therapy are sought. These patients may have developed opioid tolerance, side effects with increased doses or may have infiltrative or neuropathic pain that is poorly responsive to opioids.

Despite the absence of convincing evidence for their efficacy [17, 18], adjuvant agents such as clonidine, ketamine and intravenous lignocaine [19, 20] may produce a significant improvement in pain.

Other specific pain therapies may also be employed for intractable pain or to mitigate against intolerable effects of analgesic agents. Peripheral nerve blocks can be used for discrete, well-defined areas of pain secondary to tumour infiltration [21] and, may encompass neurolytic methods for permanent pain relief. Spinal administration of opioids, local anaesthetics, baclofen or other adjuvants may also be used to good effect [22]. Involvement of specialties such as anaesthesiology, pain medicine and neurosurgery can support the institution of these therapies.

## **2.2 Psychological support**

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

Paediatric Intensive Care has similarly seen the mortality amongst children decrease substantially in the last two decades to less that 5% [4]. With improved survival rates, we have also noticed an increasing need for palliative care in the management of the sequelae of chronic and progressive medical illness amongst our

Palliative care in the Paediatric Intensive Care Unit (PICU) may therefore be

• Life-threatening illness where life- sustaining therapies have been deemed

• Uncontrollable symptoms requiring advanced care which is not available or

• Significant morbidity secondary to progressive non-malignant illness or a

that their length of life will be short, and a holistic approach from a multidisciplinary team. A focus on symptom control and family-centred care at the end of a child's life may improve the experience of death for both patient and family unit [7]. We aim to facilitate a period of time for the family which will be associated with

Delivery of palliative care in PICU requires both acceptance by the child's family

'Relief of pain and other symptoms' is one of the domains of high-quality palliative care in the PICU [9]. The purpose of symptom management is to maximise comfort and improve quality of life for the child in their final hours, days or months [10]. Optimal management requires an understanding of the underlying disease process and anticipation of symptoms that may arise. Symptoms are particular to

Studies show that bereaved parents have rated the management of end of life symptoms poorly [12] and it is therefore important to provide individualized care which is both tailored to the patient's specific symptoms, and acceptable within the

Symptom management may be provided with non-pharmacological or pharmacological means. Although a constellation of symptoms may be seen in the child receiving palliative care, here we discuss problematic symptoms that may arise

Pain assessment and management is fundamental to good palliative care practice. Our goal is to alleviate pain and the fear that it garners in the child and

Pain is assessed using age-appropriate tools [14], and attention is paid to the impact of pain upon the family unit [15]. We initiate pain management in a manner that is similar to that on the ward, with adherence to the WHO analgesic ladder [16] and utilisation of opioids as the cornerstone of therapy. We employ non- pharmacological measures such as physiotherapy and cognitive behavioural

therapy (CBT) in conjunction with pharmacological therapies.

**16**

in PICU.

family [13].

patients.

used in the following contexts [5]:

futile and must be withdrawn.

practical on the regular ward.

positive memories [8].

broader context of their family.

**2.1 Pain management**

chronic life- limiting conditions [6].

**2. The role of PICU in symptom management**

each individual patient and can vary substantially [11].

Many children, regardless of age, will experience psychological issues at the end of life. PICU staff must actively seek and attempt to address these matters as research has shown that psychological issues at the end of life are often under recognised by staff [12, 23]. A clinical psychologist should be involved and can provide evidence- based interventions for emotional or behavioural symptoms [24]. Therapeutic interventions such as cognitive behavioural therapy and relaxation strategies are used in conjunction with pharmacological treatment for relief of distressing symptoms.

Although anxiety may be present throughout a life-limiting illness, it may be particularly pronounced at the end of life. The child may express a fear of death itself, or a fear of uncontrolled pain and suffering around the time of death [25]. Parental anxiety and fear can strongly influence this. Management is dependent upon the age and understanding of the child. Guided by the parents, a degree of open communication about their condition and provision of verbal reassurance may alleviate anxiety significantly. Conservative strategies such as relaxation, meditation, or music therapy are also beneficial. This complementary therapy can play a significant role in the provision of holistic care to patients and their families. If drug therapy is deemed necessary, benzodiazepines may be useful anxiolytics.

Cerebral irritability is occasionally a feature in the paediatric patient receiving palliative care. The child may be agitated and inconsolable. Reassurance, and the creation of a peaceful environment can be complementary to pharmacologic strategies. Gabapentin has been shown to be effective in these cases [26], but may not always be practical due to its enteral route of administration. Alternative drugs which may be utilised in cases of severe distress include; levomepromazine; clonidine; chloral hydrate and lorazepam. Formulations can be made specifically by pharmacy to allow rectal or buccal administration.

#### **2.3 Other symptoms and their management**

#### *2.3.1 Bleeding*

Thrombocytopenia, coagulopathy or local tumour effects may cause bleeding in the dying child. Simple measures can be utilised in the case of haemorrhage. The child can be nursed on dark coloured bedding. Tranexamic acid- soaked gauze can be applied to bleeding mucous membranes and adrenaline- soaked gauze can be applied directly to bleeding points. Occasionally, blood transfusion may be

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 of the patient.

## *2.3.2 Dyspnoea and secretions*

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 blood transfusion.

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 glycopyrronium bromide.

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 dyspnoea or distress.

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 to the PICU team.

#### *Case 1:*

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 transferred back to the oncology ward.
