Children represent hope, promise and energy. Exploring, playing and learning seem to be par for the course in the childhood years, but for HCA’s Star PALS patients, things are far from straightforward.
The Star PALS programme, HCA’s paediatric palliative care arm, serves children and minors (up to 19 years old) who are afflicted with life-threatening or life-limiting conditions that range from neurological or congenital illnesses to childhood cancers. The term “paediatric palliative care” might evoke a wide spectrum of emotions, spanning sadness, confusion, hopelessness or even feelings of unjust at the thought of a child leaving way before his or her time.
The thought of children being in palliative care might seem ominous or sombre, but in reality, it is a journey of hope, support and comfort.
Paediatric palliative care is a specialisation relatively less understood. So what are some of the most common myths surrounding paediatric palliative care?
One of the most prevalent myths encountered by the Star PALS team is the belief that children who are referred to palliative care have exhausted all treatment options and that there is no more hope in further treatments and subsequent recovery.
Therefore, if the child is still receiving active therapy and not dying, there is no need for paediatric palliative care.
Fact:One of the goals of paediatric palliative care is to offer support, emotionally and physically, to these young patients and their families. It aims to provide some semblance of normalcy in the midst of emotional turmoil and painful treatments.
Another common myth revolves around the belief that being referred to palliative care also means that the patient’s primary care doctor in the hospital will abandon their care and cease to do their best to treat them.
Fact: Paediatric palliative care is often undertaken in collaboration with the patients’ primary healthcare providers to deliver customised holistic treatment plans. The patient and his or her family are actively involved and supported throughout the whole decision-making process.
Along the similar vein of abandonment, another common misconception is that children who are referred to palliative care are often left to languish in hopelessness and misery, in the absence of treatment.
Fact: Paediatric palliative care comprises a multidisciplinary team of professionals, who are able to attend to the clinical, emotional, spiritual and psychosocial needs of the patients and their families.
Opioids have been given a bad rap for issues associated with addiction, dependency and withdrawal. To manage pain, shortness of breath and prolonged cough, morphine is commonly prescribed, which might lead to concerns relating to addiction in children.
Fact: Morphine helps to soothe distressing symptoms and its usage usually begins at low doses. When it is prescribed and used under close medical supervision, it will not lead to addiction.
Illness is undoubtedly distressing for children and their families. Some hold the belief that palliative care is a death sentence, and that it will not make any real difference in the patient’s care, especially if the condition is life-limiting with a poor prognosis.
Fact: From the management of physical symptoms to providing guidance in decision making, the paediatric palliative care team aims to ease the suffering of patients and their families by providing the best possible care.
Battling with illness is never easy, especially when it befalls a child. The weight on their young shoulders and that of their loved ones, is unimaginable. And therein lies the role of Star PALS: to share the difficult burden with them and bring light into their lives.
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