The Jakarta Post
An NGO is striving to provide palliative services to children from poor families with terminally-ill diseases like cancer and AIDS.
Rachel House has five nurses, trained by palliative experts from the US and Singapore, who visit their child patients by riding motorcycles amid the city's horrendous traffic.
'Palliative comes from the Latin term 'pallium', which means cloak,' Rachel House program manager Hapsari Wirastuti told The Jakarta Post in a recent interview. 'With palliative care, we don't only give medical treatment, but also physical, emotional and spiritual care.'
Hapsari explained Rachel House was founded in 2006 by Lynna Chandra, a banker who had a best friend named Rachel who died because of cancer.
Hapsari said usually the nurses took care of the children when parents were busy trying to make a living, by teaching the children drawing, massaging while reading stories to them and talking about their hobbies or favorite movies.
'We have standards for children who are our patients. They have to be below 18-years-old, from poor families and have recommendation letters from a doctor verifying they need palliative services,' Hapsari said. 'Because we don't have many resources, we only serve children with HIV and cancer, even though those are not the only life-threatening diseases.'
She said since her organization had started to offer palliative services in 2008, its nurses had served 150 patients.
'Most of the patients and their families refused to accept palliative services because they couldn't accept the reality of death,' she said. 'However, after we explain the importance of palliative services and our nurses use their experience to approach them, they eventually agree.'
A nurse of Rachel House, Rina, said no parent could bear the thought of losing their children.
'But parents should understand that forcing medical treatment like chemotherapy on a child at the end of his/her life will hurt the child more,' she said. 'We should give the kids support so they can die peacefully.'
She said palliative care helped children to be calm and see the bright side of their predicaments.
Rina cited one of her patients ' a 13-year-old boy suffering from bone cancer ' who impressed her and made her believe that with palliative care, every child could 'leave with love'.
After a long and painful treatment in hospital, the boy asked his parents to bring him home, where his remaining days were full of joy and he passed away in peace. (ian)