Children’s Palliative Care
Palliative care does not mean hospice care. The biggest difference is the time that the service begins. According to the World Health Organisation, palliative care is applicable early in the course of life-threatening illness. On the other hand, hospice care is generally given to patients during the final phase of their terminal illness, usually the last 6-12 months of life.
While both services aim at improving the quality of life of patients and their families, controlling and managing discomforts and offering mental support, palliative care has a longer service period and a broader scope of service for its earlier intervention. It is safe to say that hospice care is only part of palliative care. Therefore, a child in palliative care can still undergo aggressive treatment, but receiving hospice care means that all aggressive treatments are no longer viable to the patient.
The most appropriate time is as soon as possible after the patient has been diagnosed with terminal or life-limiting illness, when the parents have consented, and when a referral to the service has been made by a doctor.
Yes, especially when it is the wish of both the patient and the parents and it has been fully-discussed with attending medical professionals. It is also important to ensure that a full assessment has been made and that the necessary arrangements are completed before the patient is moved home. Once at home, registered nurses and social workers of our children’s palliative care team will visit the patient at home as needed to support the parents and advise them on taking care of their sick child.
It is common for life-limiting children to have painful symptoms, which may be caused by treatment procedures or their own diseases. Analgesics have two main categories. Doctors will prescribe suitable medicines according to the condition of the sick child. There are many types of modern analgesics. Each has a different effect and needs to be prescribed. Morphine analgesics, which are very effective in moderating cancer pain, will be prescribed when first-line analgesics are no longer effective, and the daily life and mood of the sick child are severely affected.
Some parents are hesitant to give analgesics to their sick child because they are afraid of the possibility of addiction and/or the side effects of the drugs. If the dosage of opioid class analgesics such as morphine is adjusted gradually according to the doctor’s prescription, the sick child will not become addicted to the analgesic. Importantly, when the pain is relieved, the quality of the child’s life will be improved.
Death is a natural process and can occur at any time. If we are able to prepare for it well, life becomes more meaningful as we are able to plan properly and build a buffer against the unpredictability of life. Parents naturally find it difficult and distressing to explain the facts to their sick child, but if we can find the right way to talk to a child about his impending death it will help that child to fulfill his wishes. These may include bidding farewell to their beloved ones, giving instructions on how to distribute their belongings among friends and relatives, and arranging the details of their own funerals before they pass away.
While this may seem hard, parents can find appropriate ways to talk to their sick child with the help of professional counsellors and medical staff. This allows for ventilation of emotions and helps to relieve pressure, both for the parents and for the child. In fact, it is surprising just how much strength children can display in facing their own death. The most important thing is to let children know that everyone will be by their side and support them till the end.