SINGAPORE – Lynna Chandra of Medan, Indonesia, has been selected by Ashoka: Innovators for the Public as a member of its global fellowship of leading social entrepreneurs.
Lynna Chandra is changing the way children with terminal illnesses are treated in Indonesia, replacing the default of “giving up” on such patients (when treatments are no longer viable) with a new system of continuous care for the children and support for their families. Her Jakarta-based organization, Rachel House, provides palliative care to children in the final stages of HIV/AIDS and cancer. Patients who benefit from Chandra’s services aren’t forgotten or isolated; they can live with comfort and dignity through their last days. In addition to providing direct care, Chandra is leading a movement to integrate pediatric palliative care into the Indonesian healthcare system.
Though there are nearly 11,000 new cases of childhood cancer each year in Indonesia, palliative care – a medical discipline that focuses on pain and symptom management in a holistic manner – is not a common practice.
“When we were recruiting our first batch of nurses, any mention of palliative care or hospice was met with blank stares” Lynna said. “Only then did I realize that palliative care was not taught in medical or nursing schools.”
One reason is tied to Indonesia’s strict policies on narcotics, which limit access to painkillers such as opioid analgesic, the most effective treatment for severe pain among cancer patients. Another cause can be traced to 2007 governmental regulations, which made palliative care legal to practice only with a hospital license and only for adults.
With such restrictions in place, palliative care has never been formalized into Indonesia’s healthcare system. As a result, most nurses and hospital staff lack training in this area. Instead, they focus on processing patients in overcrowded conditions, providing cures, or, when a cure isn’t available, discharging patients to make room for others.
Founded in 2006, Rachel House began providing at-home care and support in 4 areas of Jakarta in 2008. Since then, Chandra has created ways to integrate her services into the chain of existing healthcare providers, instituting a referral system that enables doctors and nurses at public hospitals to refer patients to Rachel House in a few simple steps. And to ensure optimal care for patients, Chandra has actively promoted awareness of palliative care and brought palliative care training to public hospitals to ensure continuum care for patients. Perhaps most important, her advocacy has made access to the best pain medicine now possible.
Children who are referred to Rachel House receive holistic care, including pain relief and symptom management, as well as spiritual and psychosocial support – making it possible for patients to live optimally through their remaining days. Services are free for patients, most of whose families would have sold all of their belongings to afford the treatment.
Rachel House is quickly becoming a national role model of how to provide high-quality homecare to sufferers of some of the most painful diseases. Chandra has mobilized hundreds of nurses and doctors to take part in palliative care trainings. Furthermore, she has lobbied the Higher Education of Health Science and the Nursing Schools in Jakarta and as far as those in West Java Province to integrate pediatric palliative care nurse training into their curriculum.
A former banker, Chandra was born in Sumatra and educated in Singapore and Australia. She was inspired to improve the lives of dying children after experiencing the death of a beloved friend to cancer in 2004. After observing how her friend passed away surrounded by love and warmth, Chandra felt troubled that many people – especially sick children from poor families – weren’t so fortunate. She became determined to change the fate of children living with fatal illnesses in Indonesia.
If you would like to learn more about Rachel House, please contact:
Yayasan Rumah Rachel (Rachel House)Graha Indramas
Jl. Aipda KS Tubun Raya, No. 77, Jakarta Barat, 11410
Tel. No. (021) 5365 2197
E-mail: info@rachel-house.org
Website: www.rachel-house.org
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