JAKARTA — Yanti, 93, lives in a tiny room along with three other family members in the Indonesian capital of Jakarta. She's unable to move or get up so she lies on a bed that dominates the cramped space. The air is thick with the stench of stale urine.
Yanti tells me she can't pass a bowel movement. She says she's constantly urinating. She lies on a layer of opened diapers. She grabs the flesh on my arm, which suddenly feels more chubby and elastic than ever before in her bony hand covered in thin, papery skin.
Palliative care is practically unheard of in Indonesia. Those living with chronic and terminal diseases have little access to pain management and support that could help make their lives more comfortable.
Yanti's neighbor Ibu Deti is a firecracker brimming with energy and jokes. She brings a gust of fresh air into the tiny room. Deti chats and shares stories with Yanti and her family. Yanti likes to remember the past. Yanti "will share stories, laugh and joke. But in the end she would always say, ‘why haven't I died yet?"," Deti recounts. Deti is part of a team of more than 900 community volunteers spread throughout Jakarta who've been trained in the basics of palliative care by Rachel House, a local NGO.
"Volunteers have been trained in how to respond to those kind of questions, how to comfort the patient when they have those kind of worries," says Prita Rifianti, program manger of Rachel House. "If the patient is sad or angry, the volunteer knows how to respond to that in a way that is hopefully relieving for the patient."
Deti and other volunteers do home visits to check on the basic needs of the patient and his or her family. They make sure the patient is being turned over regularly to prevent bed sores and has access to nappies, wheelchairs and anything else that can make the patient's life more comfortable.
But Indonesians still largely lack access to pain management.
"One of the biggest challenges being patients with chronic or serious illnesses tend to have a lot of pain, physical pain, that tends to go unrecognized or untreated by our current healthcare system," says Rifianti. "Sometimes the patient and the family think, well if you're sick of course you have pain, if you're sick of course you're going to be uncomfortable. Or there are people who might think this is a test or a punishment from God, so this is something I have to live with."
Yanti says her whole body hurts. Even though she was struggling, she wasn't taking anything to ease the pain. Painkillers aren't easily accessible in Indonesia, even for those who need them the most.
Rifianti says that the World Health Organization recommends oral morphine tablets, a cheap and effective painkiller, but a lot of healthcare professionals aren't familiar with the pill and don't know how to administer it.
"There's a certain fear among healthcare professionals and also the community that oh, these are addictive drugs and it might cause addiction, it might cause death, and therefore all of that combined cause it to be very difficult to access painkillers," she says.
Journalist Nicole Curby at the Rachel House care center in Jakarta — Photo: Nicole Curby/KBR
Painkillers have the stigma of narcotics – a stigma that is prevalent throughout Indonesia.
Rachel House trains volunteers in pain management. "When you see a patient you want to treat not just the illness, not just a body, but the patient as a whole human being, and you want to treat not just a body but all the emotional and social and spiritual needs of the patient," says Rifianti.
After visiting Yanti, Deti consults Rachel House's medical team and arranges for a doctor to make a home visit and prescribe pain relief medication to Yanti.
Rifianti says community volunteers like Deti who live in the same neighborhood as their patients are a vital link in the chain.
"There is this potential in the community, these volunteers who know their neighbors, who know their community, who know where to get healthcare and all of that," she says. "They become another set of eyes and hands on the ground, where they can identify patients that are hidden in the community."
Deti says that she feels proud when she can make patients happy. "We can help people through other means besides money. We can give them attention, energy, love. I think we all need that."