The Power of Paediatric Palliative Care
At the heart of the palliative arts concept is the belief that when we engage in purposeful activity, it can enrich and add meaning to life, even during treatment for a serious illness.
We speak to Ria Thomas, chairperson of ANGSANACare – a fully registered not-for-profit society created as a support service to palliative care for underprivileged paediatric patients and their families.
Thank you for agreeing to participate in this interview. We’d like to begin by asking you to describe the work that ANGSANACare is undertaking, how did this come about?
ANGSANAcare is a registered NGO formed to benefit underprivileged children who are classified as needing palliative care. The psychotherapy services are provided free to these children and to their parents who are also suffering trauma and depression along with their very fragile and frightened children.
ANGSANAcare was formed at the request of doctors working in the field of paediatric palliative care, as this service was not available in Malaysia until then. We utilise the power of art, music and play in therapies that enable patients to work through their fragile emotions and pain without the need for complex language and in the comfort of a fun and engaging environment.
Doctors have witnessed reduction in their patients’ pain, stress levels stabilising and a greater ability in these kids to accept medical treatment and intervention that can be debilitating. Parents have reported that they communicate better when working with their sick children, after sessions with our therapists.
With our therapy, our patients gain confidence, are more positive and engage better with medical staff allowing doctors to give them much needed treatment that can save their lives.
What made you devote so much of your life to palliative care?
My mother, who had given most of her life to social work and volunteerism, was stricken with cancer and passed away at 47, having suffered enormous pain and distress. She was given superb medical care but without any professional support for her emotional and mental anguish at leaving behind a very young family.
So when this request was made of me by the doctors to start an NGO such as ANGSANAcare, I couldn’t imagine a better way for me to give back to society and to follow in my mum’s footsteps.
In your leadership role at ANGSANACare, do you view palliative care as a ‘nice to have’ or a ‘must have’ for hospitals across Malaysia?
I intuitively knew how important these services were when I first started ANGSANAcare. However, once the services were running smoothly, I can say in all confidence that palliative care and its supporting services are vital in every hospital.
The relief, strength, acceptance and calm that we have provided through our care of children and families who are suffering, has proven how important it is to provide mental and emotional support alongside expert medical care.
I am also on the Board of the Malaysian Paediatric Palliative Care Association (MAPPAC) and we are doing all we can to expand these services into every Malaysian hospital.
What has been ANGSANACare’s biggest achievement since its inception?
Simply, the complete acceptance among doctors, hospital staff, parents and paediatric patients that ANGSANAcare can improve the lives of the children and families that we serve. The initial resistance we faced was understandable as the patients are very fragile.
Parents felt that their children were better off resting than “indulging” in some art and music classes. It took time for all present in the hospital to understand that these sessions were far from just playing with art or music and greatly improved the child’s pain, acceptance of their condition and the will to continue with medical intervention.
How can members of the public get in touch with ANGSANAcare should they wish to partake in the art therapies you are offering?
Currently, the funds that we have collected are insufficient to spread our services beyond the Paediatric Institute of Malaysia (in HKL). One day we hope that with help from the government and other sponsors, we will be able to set up a centre and mobile therapy services in every state.
What gives you hope for the future?
New Malaysia! With funding from a government that will acknowledge the needs of the most vulnerable children in Malaysia. I also feel that it will soon be recognised that the mortality rates of children in our care have dropped significantly. So that these kinds of services in palliative care are understood to be imperative to a modern society that believes in good mental health as much as a physical one.
For more information on how you can help ANGSANACare, log on to their website at http://www.angsanacare.org/