As a paediatric palliative care service, Rachel House treats poor children diagnosed with cancer and HIV in Jakarta. They are currently working on a campaign called the Living Wall to raise awareness for palliative care and give voices for children who live in pain.
For some people, palliative care is unheard of. In Indonesia, where people are inclined to avoid discussions about death and pain, palliative care is often misconstrued as care given only for the dying, while in reality it helps people with life-limiting conditions to alleviate pain or symptoms. The idea of palliative care is for people to be able to live life to the fullest from the moment they are diagnosed until they die.
As a matter of fact, the term ‘life-limiting’ is not restricted to terminal patients. Conditions concerning the physical, emotional, social and spiritual wellbeing of a person also come into play. A person who has diabetes or hypertension, for instance, can be classified as someone with life-limiting conditions.
When a person must control his or her diet, or relies on insulin, then his or her activities become limited. Ultimately the other three components play out as emotional need comes in, when the person diagnosed submits to fear of losing his or her life; starts wondering about paying for treatments (social); or perhaps becomes closer to faith (spiritual). What’s more is that these three components also apply to families and friends of the diagnosed, all of which are embraced by palliative care.
Familiarising palliative care turns out to be a greater challenge than it may seem. When founder of Rachel House, Lynna Chandra, first built the palliative care service, she struggled with the community’s, and even medical professionals’ acceptance. Due to palliative care’s misconception as a treatment frequently associated with the dying, referring a patient to palliative care might symbolise failure.
“For doctors, admitting and referring a patient to palliative care means that they have lost the battle because doctors are trained in medical school to save lives. Palliative care is the antithesis of that.”
As the first palliative care service in Jakarta, Rachel House cares for children from marginalised backgrounds who suffer from HIV and cancer. The determination to alleviate pain and suffering is what drives Rachel House to continue trying to get the community, professionals and the Government involved.
The motivation behind founding Rachel House came from Chandra’s friend Rachel, who, during her last days, was in need of financial resources. This led Chandra to wonder how sick people, especially children, spend their last days. A visit to a hospital, during which she encountered children screaming in pain due to the hospital’s inability to buy pain killers, encouraged her to build a hospice. It was later reconceptualised into home-based visits, where nurses instead come to the children, make assessments and communicate with doctors about their conditions.
The reconceptualisation occurred because the hospice failed to attract patients, as children preferred to be home with their families. A bigger issue was identified when Chandra realised there was a need for retraining doctors and professionals to start acknowledging pain. The lack of knowledge about palliative care at the time meant that medical professionals did not receive proper training on symptom management.
Furthermore, people’s sentiment towards pain hinders the chances for palliative care to be discussed as we are not accustomed to addressing pain. “When somebody is sick in Indonesia, they have this attitude of pasrah (giving in),” explains Chandra. The tendency of mystifying death and pain by medical professionals may consequently diminish child patients’ rights to a fulfilling life in their final days.
What children require the most, according to Chandra, is the knowledge that they will not be left to suffer alone because no human deserves such a thing. “I thought, as children they didn’t ask to be born. And they didn’t ask to get HIV. And there is no reason why children should actually be left alone,” Chandra says.
For that reason, Rachel House develops programmes to train professionals and bring palliative care to light. In order for people to start talking about this sensitive subject, Rachel House are working on a campaign called ‘The Living Wall’. This student-led campaign works by building walls in the form of a board or banner in their schools, where people can cherish their lives by completing the phrase: ‘If I had one more day to live’. The youth play a pivotal role as advocates to triggering conversations about palliative care.
One of the volunteers of Rachel House, Helene Boscardin, emphasised how palliative care highlights the importance of adding life to one’s remaining days. “Our focus really is more about how today is precious, because not everyone has a tomorrow.” The campaign tries to spread the message that for children with life-limiting conditions to be able to enjoy today, they need palliative care. Boscardin hopes that in return people will stop pretending that child suffering is not real and ask for palliative care.
All it takes is for us to start acknowledging pain and normalise discussions about death so that we can deal with it. If we neglect this, we will be depriving people’s rights to both the life and the death they truly deserve.
As Chandra says, “We know that first and foremost death exists. Patients do die. But how do we make sure that in their final moments they are able to actually have the best quality of life?”
To support Rachel House and the Living Wall, please visit:
Facebook: The Living Wall – Indonesia