Palliative care is practically unheard of in Indonesia.
Those living with chronic and terminal illness have very little access to pain management and support that could help make their lives more comfortable.
Nicole Curby explores one initiative that’s tackling this desperate need for millions in Indonesia’s capital, Jakarta.
Ibu Deti is visiting her neighbour, 93-year-old Yanti.
Yanti’s house is just one tiny, cramped room where her family of 4 live, cook and sleep. But the space is dominated by the bed Yanti lies in. She’s unable to move or get up.
The air is thick with the stench of stale urine.
Yanti tells me she can’t pass a bowel movement; that she’s constantly urinating. She’s lying on a layer of opened diapers
She grabs the flesh on my arm, which suddenly feels more chubby and elastic than ever before alongside her bony hand with its thin, papery skin.
She tells me I’m still young and healthy. And right now, I feel it.
But Yanti’s neighbor Deti is a firecracker – brimming with energy and jokes.
She brings a gust of fresh air into this tiny room.
Deti is chatting and sharing stories with Yanti and her family.
And while Yanti likes to remember the past, Deti says her stories always end with the same question.
Deti tells us, ‘she will share stories, laugh and joke, but in the end she would always say, ‘why haven’t I died yet?’
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 treatment by local NGO - Rachel House .
Prita Rifianti is the Program Manger here and she says volunteers are trained to deal with situations like this.
“You heard the volunteer say the patient always says ‘why haven’t I died yet?’ Which I suppose must be uncomfortable for a lot of people to hear, especially if its family members, you don’t really want to hear that from your own family.”
But, explains Prita, "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."
"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 their family – to make sure the patient is being turned over regularly to prevent bed sores, that they have access to nappies or wheelchairs, and to see if anything else is needed to make life more comfortable.
But one of the biggest issues is the lack of 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 goes unrecognised or untreated by our current healthcare system,” says Prita.
“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.”
When we visited Yanti, she told us her whole body hurt.
I could see it written on her face, hear it in her breath.
But even though she was struggling, she wasn’t taking anything to ease the pain.
Painkillers aren’t easily accessible here in Indonesia, even for those who need them most.
Prita explained that one of the cheapest and most effective painkillers recommended by The World Health Organisation is oral morphine tablet immediate release.
However Prita says that it is difficult to access because a lot of healthcare professionals aren’t yet familiar with it or how to use it, they’re not very well trained in how to use it.
“There’s a certain fear among the 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.”
The barriers to accessing painkillers are bound up with the stigma surrounding narcotics – a stigma that is prevalent throughout Indonesia.
Teaching families and health professionals about pain management is one of Rachel House’s main projects.
“We’re holding a lot trainings,” Prita says.
“First to make them realize that pain is to be treated, and that 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.”
Reinforcing compassion and empathy in health care professionals is crucial.
After our visit to Yanti, Deti consulted with the Rachel House medical team and arranged for a doctor to make a home visit, and prescribe pain relief medication.
Prita says community volunteers like Deti who live in the neighbourhood are a vital link in the chain.
“There is this potential in the community, these volunteers who know their neighbours, who know their community, who know where to get healthcare and all of that.”
“They become another set of eyes and hands on the ground, where they can identify patients that are hidden in the community.”
Community volunteer Deti is involved in many aspects of community life, and says that she feels proud when she can make people happy.
“We can help people through other means besides money. We can give them attention, energy, love. I think we all need that as well,” Deti told me after our visit to Yanti.
In the second in this two part series we meet the nurses that travel Jakarta on motorbikes