Paediatric Palliative Care: A Research Summary and Action Plan for the Sarawak Children’s Cancer Society

Despite the best efforts of parents, doctors, nurses, and patients, sometimes a child will not survive his or her encounter with cancer. The end-of-life experience is a deeply significant one for everyone involved. A child only dies once, and what occurs during this time shapes the lives of loved ones long after the passing. The end of a child’s life is difficult for everyone involved, but it can also be an opportunity to form deep and lasting memories, approach a sense of peace, and lay the groundwork for healing and acceptance in the future. If the Sarawak Children’s Cancer Society devotes itself to walking with patients and families during every stage of their journey, then excellent palliative care services are crucial to the fulfillment of its mission.

Palliative care is holistic care provided to patients with life-limiting illness. Designed to maximize quality of life, palliative care focuses on the whole person. It minimizes pain and controls symptoms, but it also offers emotional, spiritual, and logistical support for the patient and family. Palliative care is not about making a child’s life shorter or longer – instead, palliative care aims to make a child’s life better. Palliative care often leads into bereavement support; by maintaining connections with social workers, nurses, and doctors who treated their child in life, family members can better process their own loss. Bereavement support affirms the commitment of care providers to supporting the patient and family through all stages of their experience. Moreover, bereavement care can offer its own dividends; parents who feel supported by NGOs and healthcare institutions after the loss of a child may later be willing to offer their support and experience to families who are new to the palliative care or bereavement experience.

It is an exciting time to be doing palliative care work in the world at large, and in Malaysia in particular. In February of this year, the World Health Organization declared palliative care a universal human right, and has developed programming and research objectives to bring this universal right to patients around the world. In the fall of 2012, Kate Middleton and Prince William visited Hospis Malaysia in Kuala Lumpur to show support for its work. Pockets of healthcare professionals around the country are trying to improve their services. Yet palliative care in Malaysia, and in Southeast Asia as a whole, has a long way to go. There is an especially great need for good paediatric palliative care in particular; many hospices and palliative care professionals feel ill-equipped to work with children, and Malaysia still lacks good home-care resources for families.

SCCS has the potential to become a leader in paediatric palliative care in Malaysia and beyond. By using our resources and our experience to create innovative palliative care services that meet the needs of both urban and rural patients, we are developing a model to be modified and adopted in settings across Southeast Asia. Our example serves as both an inspiration as well as a practical paradigm for other NGOs and healthcare institutions. Strong palliative care services allow us to not only meet the needs of our own patients, but also engage in an international dialogue about how to best serve children at the end of life.