There is perhaps nothing more devastating as when young children die and are taken from this world before having been able to live their life to the fullest.
But instead of giving in to desperation, 45-year-old Lynna Chandra has worked relentlessly to make sure children like these can spend the remaining days of their lives pain-free and eventually die in peace and with dignity.
Lynna’s Jakarta-based foundation Yayasan Rumah Rachel, or Rachel House, started in 2008 as a pediatric hospice providing end-of-life care for children suffering from cancer and HIV. However, in 2010, Lynna and her team decided to change their concept because they realized most children would prefer to die at home in familiar surroundings, among their loved ones.
“I imagined a beautiful hospice, in an open area where you can have trees, birds singing, and very good medical care so the children are not in pain,” Lynna said. “That would be how I want to die, in a peaceful place, where I would be taken care of. But as it turns out, the children, if they have had cancer and had been through treatments like chemotherapy at a hospital, it had freaked them out so much, that given a chance, they would go home.
“We found out that many of these children wouldn’t come [to the hospice],” she added. “If they have a home in Jakarta, they would prefer that we go to them.”
That’s what the four nurses on staff at Rachel House, who were trained by medical teams from overseas, are doing now. They currently take care of 13 patients in North, East and West Jakarta.
On the day the Jakarta Globe met with Lynna, she shared the sad news that one of the patients had just passed away. “He’s been with us for two years, in and out,” she said. “But in the last week, his condition dropped. He just slipped away. He had HIV. And yesterday, we had one of our cancer kids pass away too.”
This young boy, Lynna said, had been feeling sick for a whole week, and yet he wanted to go to the mall once more and have a meal at KFC. The staff at Rachel House organized a wheelchair to bring him there. However, when they finally got him to the fast food outlet, he realized he couldn’t really eat anything because he was feeling nauseous and decided to buy a toy car instead.
“When he got back home, he was in so much pain that he never got to play with the car,” Lynna said. “But every child has a story, a wish, beyond the symptoms. They are not just patients, they are human persons.”
Going that extra mile is one of the many things that make Rachel House special. Besides being the first NGO-based medical group in Jakarta as well as the only pediatric palliative care which is non-commercial, Lynna and her team are willing to give their everything to take care of the dying kids.
“Of course you get attached to the kids, especially the nurses,” Lynna said. “We encourage each of the nurses to get to know the children beyond their symptoms and beyond who they are today, which is a patient number or file. And once you are bonding with them, you’d do anything for them. You will improve your own understanding of medical skills just so you can help the patient better.”
That is what palliative care is all about, she added. “It is quality care and time, understanding a patient and communicating with them,” Lynna explained. “A lot of children are not ready for the nurses to just come in, give them care and then get out again. They want you to play with them, to sing to them, before they are ready to let you change the dressing of their wounds.”
And it is not just the children themselves that Rachel House takes care of. The well-being of the caregivers is an equally important factor in palliative care. “If the caregivers are not happy, or if they are tired, then the child will also not be happy,” Lynna said. She remembered one patient who had cancer of the nerves.
“He screamed constantly because he was in a lot of pain,” she said. “Every time he did, his mother would slap him. We didn’t know how to cope with the mother.”
But when a doctor from Singapore was visiting, he took one look at the mother and instantly saw that she had a thyroid problem and was in pain herself — something Lynna and her team hadn’t realized. Once the mother was helped, the child’s life improved as well. In the end, Lynna said, the mother didn’t want to let her child go and the kid would linger on.
“One morning, the mother said to him, you don’t have to wait, you should go if you want to — and he died that afternoon,” Lynna recalled.
Dealing with the pain of losing young patients constantly can become quite a heavy burden, which is especially true for the nurses. “When we started, I used to ask them, do you need someone to come in and talk to you? But they always used to giggle and say it’s okay,” Lynna said.
But after a couple of years in the field of palliative care, the nurses began to understand that their work would have a lasting impact on their own psyches. In April this year, Lynna brought in Liese Groot-Alberts, one of the leading figures in palliative care, who has committed to come to Indonesia two times a year over a period of two years to help Rachel House’s team how to cope with the loss of their patients.
“She showed our team how to heal themselves, how to honor the patients, the time they have spent with them, but also their own feelings and understand that that is important, too,” Lynna said. It was the first time she saw the nurses cry and grieve over their lost children.
“Our nurses are amazing, and they are my teachers as well,” Lynna said. “They are my eyes and ears.”
As for Lynna herself, she never thought she’d end up in palliative care. She grew up in Medan, North Sumatra, and Singapore before going to Australia to study. “The family I lived with in Australia was instrumental in making me who I am today,” Lynna said. “The woman who looked after me was the type of person who would teach you the things that matter in life by showing you. She taught me what it means to care for each other and also the more you give in life, the more you are required to give, because then it becomes your responsibility.”
Yet after leaving university, Lynna started a career in banking. Eleven successful years later, she left the corporate world, without any concrete plans for what to do next. “I think the many years in banking had blinded me so much that I no longer knew who I was outside of that,” Lynna said. “That started me searching, really asking myself what do I want to be when I grow up.”
Lynna’s first philanthropic endeavor began when she was asked to raise funds for a team of Singapore doctors to conduct reconstructive surgeries for children with cleft palate in Indonesia. “In only 20 minutes, the children’s lives had changed,” she said. “It was an amazing feeling.”
At the same time, Lynna was caring for her close friend Rachel, who was dying of cancer. After Rachel passed away, an idea began to form in Lynna’s head. She did some research and visited a hospital in Jakarta that treated kids with cancer and HIV.
“I remember turning around to the doctor and asking her, ‘Why are there so many kids here screaming in pain?’ And she said, ‘Painkillers cost $10, and that’s not covered by the insurance.’ You never look back after that,” Lynna said. “After every meal I was having for Rp 100,000 ($10.50) I was thinking, that’s one child. That’s one scream. And that is how I started.”
She admits that she faced a lot of hardships at the beginning, as she didn’t know “the rules of the game.” And not all people thought she was doing a good thing by opening Rachel House. “I had foreign doctors working in Indonesia telling me, how dare you start something looking after the dying when the living are still struggling?” Lynna said. “Then I asked them, how would you like to die? Not in pain, I’m sure. I think it’s a basic human right.”
Lynna, who is based in Singapore but comes to Jakarta every few weeks, said her main job now was to raise awareness about what Rachel House does by speaking about palliative care at nursing schools and community health care centers.
“Last week, the head of the nursing association in Jakarta came to us to join our weekly team meeting, and he said we had the model of home care that they were trying to grow in Indonesia,” Lynna said. “In June, we were invited to speak at the West Java medical conference, attended by 200 doctors and nurses, all bemoaning the fact that when they send their patients home, there is absolutely no training for the caregivers. The patients therefore basically languish in their last few weeks or days in a horrific state because their caregivers just don’t know what to do. There are also no community nurses. So today, if people go home for any sort of care, there is no preparation.”
Yayasan Rumah Rachel
Graha IndramasJl. Aipda K.S. Tubun Raya No. 77, West Jakarta, Tel. 021 5365 2197E-mail: firstname.lastname@example.orgIf you would like to get involved, visit www.rachel-house.org