Help bring Palliative Care to Indonesia's children

College student and budding photographer, Alfiano Sutianto, recently spent time with our Community Network in Palliative Care trained volunteers in North Jakarta. Alfiano, who is from Depok (South of Jakarta), shares his story and photos below.

My name is Alfiano and I am a college student in Central Jakarta. My daily activities are usually pretty normal and unremarkable of students like me - studying, attending meetings, eating and chilling with my friends. Recently, however, I decided I wanted to experience something different and more rewarding in my life. So I decided to volunteer at Rachel House* as a photographer and was assigned to its North Jakarta community-based program where they provide basic palliative care training to community members (mostly women). The program is called Community Network in Palliative Care, or CNPC.

On my first day, I was exposed to the harsh reality for children and adults living with serious illnesses, and learned why palliative care* is important. Honestly, I never thought that there was an NGO in Jakarta that allocated its limited resources to teach and equip community members with skills to support and care for people living with serious illnesses. Hundreds of women volunteers have been trained under this program and signed up as CNPC volunteers.

During my time with the CNPC team - Ibu Susi (a palliative care nurse), Ibu Yus and Bapak Nando - I met with volunteers from nearby communities of Tanjung Priok. These women volunteers are known as ‘ibu-ibu kader’. We heard from these women about the health condition of their patients, who are essentially their neighbours. It was so interesting. Interesting doesn’t necessarily mean happy stories; in fact, many can be categorized as tragic. It surprised me to know how common these stories of tragedies were in the lives of people living with serious illnesses; and in a community so close to where I live and study in central Jakarta.

On the second day, I visited a patient’s house near the Puskesmas (Primary Health Clinic) in the Lagoa neighbourhood. This is when things really got to me. When we (Ibu Yus and some of the ibu-ibu kader) met with the patient, she started crying. She was very grateful that we came to her house and were checking in on her and asking about her health. Still single, she lives with her cousin in a house with very limited space. She has been diagnosed with stroke several months ago.

Right then I thought of my family. “What if one day, they are diagnosed with life-threatening diseases? What support would I give? Who would stay in touch and be there when the going gets tough? It may sound pretty cliché, but these questions were running through my mind right there at the patient’s home. It must be so hard when you are sick and no one is asking about your day, or even your condition.

I was holding back my tears. Maybe, as a millennial living in the middle of a big cosmopolitan city, I have been too busy with myself, trying to make the most of this crazy city. I never stopped to think about other people that might need my help.

Maybe I can’t do much to help people’s financial problems right now; but Rachel House taught me that financial problem isn’t the only problem. Sometimes, someone just needs to be asked a simple question like, “Hey, how are you feeling?” 

*Rachel House is a not-for-profit organisation established in 2006 to provide home-based palliative care for children living with serious illnesses such as cancer and HIV.

*Palliative Care is a specialised medical care providing pain relief and psychosocial support to patients and their families so that they can live with joy and dignity with optimal quality of life.