A Guide to Symptom Management in Paediatric Palliative Care

Paediatric palliative care is a specialised field dedicated to improving the quality of life for children with life-limiting and life threatening conditions. This care focuses not only on managing symptoms but also on providing holistic support to the child and their family. In UK hospices, where tailored care is essential, symptom management is a crucial aspect of paediatric palliative care, ensuring that young patients experience the best possible quality of life, regardless of their prognosis.

In this guide, with valuable insights from our paediatric palliative care specialist, we aim to educate and inform you on what symptom management in childcare entails.

Our paediatric palliative care specialist, speaking of her experience in both hospital and hospice settings, highlights the importance of this holistic approach: “It’s vital to consider all the child’s complex needs in order to accurately diagnose and treat distressing symptoms. For example, pain is multi-dimensional and not simply physical or acute. Ensuring the different types and causes of pain are all considered enables more effective and targeted treatment, utilising all appropriate supportive therapies”.

Common Symptoms and Management Strategies

In paediatric palliative care, symptoms can be complex and varied – children may experience a variety of symptoms depending on their underlying condition. Effective symptom management requires an innately tailored approach, as each child’s needs are unique.

Pain Management: Pain is one of the most common and challenging symptoms in paediatric palliative care. Managing pain effectively is crucial to improving a child’s quality of life. In hospice settings, pain management often involves a combination of pharmacological treatments and complementary therapies. For example, children might receive medications such as analgesics or anticonvulsants, alongside therapies like physiotherapy, massage, or music therapy to help alleviate pain.

Our paediatric care specialist explains how symptom management in hospices differs from more traditional medical settings:” In hospitals, pain management is often pharmacologically led due to the acute setting. However in a hospice there is a much more holistic approach. Pharmacological treatments may be used alongside music therapy, relaxation therapies, play and talking therapies, among other things.”

Nausea and Vomiting: Nausea and vomiting can be distressing symptoms, particularly for children undergoing treatments like chemotherapy. Managing these symptoms typically involves antiemetic medications, dietary adjustments, and hydration. Complementary therapies such as aromatherapy or ginger tea may also be used to reduce nausea.

Respiratory Symptoms: Breathlessness and other respiratory issues are common in children with life-limiting conditions. Symptom management strategies might include the use of bronchodilators, oxygen therapy, and positioning techniques to ease breathing. In some cases, non-pharmacological methods like relaxation exercises or the use of fans to circulate air can provide relief.

Fatigue: Fatigue is a frequent complaint among children in palliative care, often exacerbated by treatments or the underlying disease. It makes all other aspects harder, especially for children who might be used to having boundless energy. Managing fatigue involves a balance of rest and activity, ensuring that the child remains as active as possible without overexertion. Nutritional support and physical therapy can also play a role in managing fatigue.

Emotional and Psychological Support: Emotional distress, anxiety, and depression are regrettably common among children facing serious illness. Symptom management in this area includes psychological support through counselling, play therapy, and the involvement of family members in care. Creating a supportive environment where the child feels safe and understood is essential.

Symptom management in paediatric palliative care also plays a crucial role in achieving the broader goals of palliative care, which include providing comfort, maintaining dignity, and supporting the child’s overall well-being. By focusing on symptom control, healthcare providers can help children live as fully as possible, regardless of the progression of their illness.

Specific Considerations for Paediatric Palliative Care in UK Hospices

Managing symptoms in children presents unique challenges, particularly in a hospice setting. Unlike adult patients, children may have difficulty articulating or communicating their symptoms, especially if they are very young, non-verbal, or developmentally delayed. This makes it essential for healthcare providers to work closely with parents, who often understand their child’s needs and behaviours better than anyone else.

The challenges of working with non-verbal children: “Identifying symptoms and causes can be challenging. As well as clinical assessment and observation of the child, understanding their facial expressions, general demeanour, different sounds and cries or positional changes; iit is about working with, and listening to the parents/carers as they know their child best”.

Age-Appropriate Communication: Communication with paediatric patients must be tailored to their developmental level. For younger children, this might involve using simple language, visual aids, or play to explain what is happening. Older children and adolescents may require more detailed explanations and should be involved in decision-making as much as possible, depending on their cognitive abilities.

Our specialist adds, “We always talk to the individual patient as well as involving the parents when consent is required. It is important to treat the child as a person and not solely as a patient”.  

Role of Play Therapy and Other Child-Specific Interventions: Play therapy is a valuable tool in paediatric palliative care, helping children express emotions they might not be able to verbalise. It also provides a sense of normalcy and joy in an otherwise challenging time. Other interventions, like music therapy and art therapy, serve both therapeutic and symptom management purposes, offering children ways to cope with pain, anxiety, and other distressing symptoms.

Our palliative care specialist elaborates on the importance of these therapies: “Play therapy, music therapy, and complementary therapies like relaxation therapy and massage are all really important. They’re not just there for symptom management; they help improve quality of life, bring joy, and provide emotional support. These therapies are available not just to the patient but to the whole family”.

Official UK Guidelines

In the UK, paediatric palliative care is guided by several official guidelines, including those from NICE (National Institute for Health and Care Excellence) and the Royal College of Paediatrics and Child Health (RCPCH). These guidelines provide a framework for managing symptoms in children with life-limiting conditions, ensuring that care is consistent, evidence-based, and centred on the needs of the child.

Key recommendations from these guidelines echo what is so needed, and include the use of interdisciplinary teams, the integration of palliative care early in the disease trajectory, and the importance of involving families in care decisions. At Hospice in the Weald, we implement these guidelines to provide the highest standard of care for paediatric patients.

Our specialist recalls one such case: “We have a patient who is non-verbal, non-mobile, and was experiencing severe pain. The mother was extremely distressed, feeling helpless and unheard. By coordinating with the palliative care team, community nurses, and other specialists, we were able to support getting her complex pain under control. The transformation was incredible – she became clearly more comfortable, her mood improved and she became vocal and smiley. Her mother was able to regain some of their previous normalcy and their day to day became more manageable again”​.

Another case involved a non-verbal child with complex medical needs who was experiencing severe discomfort. The hospice team, working closely with the child’s parents, implemented a comprehensive and unique care plan that included adjustments to medication, the introduction of music therapy, and regular assessments to monitor the child’s response to treatment. Over time, the child’s symptoms were brought under control, leading to a noticeable improvement in their overall well-being.

These cases demonstrate the importance of a tailored, multi-modal approach to symptom management in paediatric palliative care. By addressing both the physical and emotional aspects of a child’s condition, hospices can help children lead more fulfilling lives, even in the face of serious illness.

The Impact of Symptom Management in Paediatric Palliative Care

Symptom management is a cornerstone of paediatric palliative care, essential for ensuring that children with life-limiting conditions can live their lives as fully and comfortably as possible. By taking a holistic approach that includes both medical and complementary therapies, and by involving families in the care process, children’s hospices like Hospice In The Weald provide a vital service that enhances the quality of life through care and therapy for children and their families. We do what we do not simply because it is needed, but because it requires the passion, compassion and knowledge of communities and specialists alike – because we see the difference it makes every single day. Please reach out to find out what specialist care and support we provide.