“There were about thirty beds on each side of the ward and I remember seeing all the children screaming in pain”. That moment, walking through the paediatric ward at one of Jakarta’s public hospitals, has forever stuck with Lynna Chandra, the founder of Rachel House, the first yayasan (foundation) in Indonesia to provide palliative care for children with advanced stage terminal illnesses like HIV/ aids and cancer.
Indonesian-born, Singapore resident Lynna, who was an investment banker, was driven to visit the children’s ward – and eventually establish Rachel House – after caring for a close friend who battled with cancer for thirteen years. Witnessing the last days and eventual passing of her friend Rachel Clayton moved Lynna as is it would anyone. For Lynna, Rachel’s passing had shown her that no matter how sick a person is, and how little time they have left, those last days can be spent comfortably and contentedly. Being part of Rachel’s last days also made Lynna realise how expensive treatment and pain management for cancer is. She began to wonder how Rachel’s experience would differ from that of patients from poorer backgrounds. How would they spend their final days? After visiting wards and talking to nurses, she realised that not only was there a huge lack of awareness about the importance of treating pain, but the whole concept of palliative care was largely unheard of among many health care staff in Indonesia. “When you are suffering from an incurable disease, there isn’t just physical pain; there is also spiritual pain and confusion,” says Lynna. “Doctors and nurses are so stretched, especially these days, but asking “Do you have any questions? Are you afraid?” is important, as is talking to and providing information and support to the families”. Lynna’s original plan was to build a 60-bed hospice where children could spend their last days, complete with trained palliative care specialists to treat pain when needed. “It wasn’t going to be luxurious, just a peaceful place where the children could hear the birds chirping and the wind blowing… I figured it would take me a year to build and then I could go back to my happy life,” says Lynna.
Ten years later, there is no brick-and-mortar hospice, but Lynna is still busy with Rachel House, which provides home-based palliative care with six fully trained nurses who go out into the city on their motorbikes to visit patient’s homes. So why the change of plan from hospice to home care? There simply weren’t any palliative care specialists in Jakarta to hire for the proposed hospice. “It really changed the entire plan. I had to get trainers from Singapore to fly in and train health care professionals here. The majority of what we did at the beginning was to build awareness that pain needs to be treated”. Despite what Lynna describes as ‘cultural barriers,’ and the common belief among poorer Indonesian communities in fate and acceptance of whatever happens, including intense pain, slowly Lynna and her team began to train nurses and spread awareness among the community about palliative care and pain treatment. Very soon, it became clear that what these sick children wanted most was to spend their last days at home, regardless of the circumstances. “A lot of the time, our nurses would ride over to the patient’s house to hear screaming coming from inside. Some of these children had been discharged from hospital a mere few days prior, and unfortunately with inadequate pain medication”.
Impacts of Poverty
Rachel House works specifically with young patients from marginalised communities who have been diagnosed with advanced stage cancer or HIV /aids. While treatment is no longer a viable option for these patients, spending their last days in comfort and with dignity is. After a child has been accepted, Rachel House’s nurses help the patients with physical pain through medical prescriptions, but they also provide guidance for families on how to care for the patient, give emotional support and advice on how to cope with the associated grief and loss, and loan medical equipment like oxygen tanks and wheelchairs to be used at home. Without the help of Rachel House, these children would certainly still die, but it would be a much more painful and stressful passing. “I thought I understood poverty,” begins Lynna, “but only through witnessing the consequences of poverty and the horrific struggle that parents have did I really begin to understand. Death is not the only thing which is difficult,” she continues. “Only recently, we visited a young patient who had HIV. He was struggling with breath; he had a pulmonary infection. Both parents had died so he was being cared for by his 23-year old uncle and grandmother. We could see that he really needed to go to hospital but the Uncle seemed totally indifferent saying, “I’m too tired. You take him if you want”.
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Lynna’s knee-jerk reaction was one of shock and disapproval. But when she stepped back to think about the situation from his point of view, she realised something very sad. “Every time he takes that child to the hospital, he loses his job. Most families in these communities earn IDR 20,000 a day. Even a trip to the hospital is IDR 80,000. What do you cut? Do you not eat for a day?” Lack of funds makes even the seemingly simple tasks of getting to the hospital and paying for food difficult. “I have seen mothers in the hospital waiting until the child has finished eating and then having the leftovers,” says Lynna.
How can we help?
Another branch of Rachel House provides training within marginalised communities for volunteers; women who go out into their neighbourhoods to care for patients with these incurable illnesses. Training covers basic things like dressing wounds, nutritional information, how to access care and hygiene. One of Rachel House’s biggest challenges at these trainings is to provide lunch for the volunteers. “Even though lunch is only about IDR20,000 per person, we quickly end up having to spend two or three million just on food. And as you know, in Indonesia, food is a big draw!”
Donations of money are welcome of course but hotels or restaurants willing to provide food for these trainings would be a massive help.
Yayasan Rumah Rachel
Graha Indramas, Jl. Aipda KS. Tubun Raya No. 77,
Jakarta Barat 11410
Phone: +62 21 5365 2197
FB: Rachel House – Children's Palliative Care Indonesia