Hidden Voices: Hospice Care Gives Comfort to Children at Death’s Door
A year earlier, she had been diagnosed with non-Hodgkins lymphoma, a type of cancer. Due to the constant chemotherapy treatments she had to endure, the inside of her mouth had become riddled with ulcers and pervaded with candida infections. Every few minutes, she would struggle to sit up and spit out saliva.
The huge tumour that grew on the right side of her chest was not immediately evident, as she often slumped to hide it. The mass was hard, the colour of soil. It possessed the veined texture of a melon and was the size of a blossoming breast, though Bunga had yet to reach puberty.
Soon after my visit, the girl who should have bloomed into a sprightly teenager, who loved watermelons and crossword puzzles, quietly passed away. She was 13. But she did so with as little pain as possible because her parents elected to stop her chemotherapy after realizing what a detrimental effect the treatment was having on their only daughter. Earlier this year, they brought Bunga to a hospice in Bintaro to receive palliative care, a form of treatment focused on pain relief and reducing the severity of disease symptoms.
The hospice is run by Yayasan Rumah Rachel (Rachel House), a local nongovernmental organization that provides palliative care for terminally ill children with cancer and HIV/AIDS. Established in 2006, the staff at Rumah Rachel includes an HIV consultant from Cipto Mangunkusumo Hospital, a cancer consultant from Dharmais Cancer Centre and a social worker.
“It is not so much about adding days to a child’s life, but adding life to the last few remaining days of their life,” said Lynna Chandra, founder of Rumah Rachel.
According to the Union for International Cancer Control (UICC), more than 160,000 children worldwide are diagnosed with cancer every year and an estimated 90,000 will eventually die of the disease.
Currently, the majority of children handled by Rumah Rachel suffer from leukaemia, retinoblastoma — a cancer that develops in the retina — as well as HIV/AIDS.
When I met Bunga, her limbs underneath her usual blue and white Kung Fu Panda pyjamas were shrunken and withered from lack of activity. She had not taken a step since her final chemotherapy session, more than a month before. Her shoulders were wide and hunched like broken sparrow wings. A fan of crossword puzzles, she needed the help of a nurse to complete them because she was unable to see out of her right eye.
The cancer came fast and aggressively. She had returned home from school one day, her back hurting. Within three days, the right side of her chest became oversized. “Like an ulcer,” her father said.
The swelling of one or more lymph nodes is a common early symptom of NHL.
The family traveled 12 hours by bus from their village in Bengkulu, southwest Sumatra, to Jakarta where Bunga spent a year in and out of hospital beds. By the time she entered the hospice, her mother told me she had outlived all of her last batch of friends at the Dharmais Cancer Center ward for children.
During Bunga’s stay at the hospice, her father was unable to find work. His days consisted of caring for his daughter — feeding her and bathing her wounds with the help of his wife and Rumah Rachel nurses. At night, he would cradle her to sleep. A farmer back in Bengkulu, he had to sell his land and auction off the rest of the family’s belongings to pay for Bunga’s medical expenses.
Rumah Rachel mainly helps low-income families in Jakarta, although some patients like Bunga come from other provinces and farming communities. For in-patient cases like Bunga, the foundation covers the expenses for medication, food and lodging for the child and a caregiver, who is usually a family member. Lynna said that some families are so poor they eat meals left over by their children.
“It’s not just about a child’s death, but it’s the total destruction of a family. They sell their house, their farm to pay for medication. Then they have to go back and work for someone else to pay off the [medical] debts,” said Lynna.
In addition to their hospice, Rumah Rachel has a day-care service in cooperation with the Indonesian Care for Cancer Kids Foundation (YKAKI). The foundation also provides home care service for families who prefer to care for their children at home, covering medical assistance not included in Jamkesmas, a government health insurance scheme for low-income residents. Families, especially poor ones, need support, both emotionally and financially, Lynna said. With the presence and support of Rumah Rachel, now there is a place for them to go.
Source: Titania Veda, Jakarta Globe May 10,2010.
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