Lynna Chandra

The number of children living with terminal cancer and HIV/AIDS is growing in Indonesia, with no end-of-life care system. Lynna Chandra has pioneered the first national system of home-based pediatric palliative care.

Lynna developed a pediatric palliative care service to provide dying children with high quality integrated care—pain and symptom relief management as well as spiritual and psychosocial support. Initially set up in hospitals, it was soon discovered that the best place for this care is in the home.

Reversing the current top-down, doctor to patient structure, Lynna focuses the pediatric palliative care delivery on parents and nurses. She believes in the power of nurses to serve as the eyes for the doctors and the voices for the patients, and has thus created a new professional role for nurses as home-based pediatric palliative care providers. Lynna equips nurses with the skills to work with parents on how to manage and administer medications, change dressings, manage pain, and detect symptoms. Lynna aims to reframe palliative care as providing continuous care rather than “giving up,” which is how it is currently perceived. Working with Health Sciences Higher Education and other nursing schools, Lynna is integrating pediatric palliative home care training into the curriculum. With the system in place, Lynna also enables parents to understand and provide support and treatment for their critically ill children and to receive grief counseling after their child’s death.

To run a home-based pediatric palliative care service, Lynna set up satellite centers to which families are referred from public hospitals, Puskesmas (Public Health Centers), traditional public health volunteers and individual health professionals. In each of these referring institutions, in-house nurses are trained to identify patients for whom chemotherapy is no longer effective and then refer these patients to Rachel House—Lynna’s organization. Breaking the existing practice where hospitals keep control of all medical records, the new referral system mandates that copies of patients’ medical records be shared with Rachel House. The home care nurses, together with parents, provide the palliative care.

With four home-based palliative care satellites spread across the greater Jakarta area and two participating national public general hospitals (Cipto general hospital and Dhamais cancer hospital), Lynna is developing the Centre of Excellence, an educational training institution as the base for spreading the philosophy and skills for home-based palliative care. The new professional role for nurses in this field is supported by the recent issuance of the Health Ministry regulation on SIPP (license to open nurse practitioner practices). National spread is further boosted by newly passed government regulation for general hospitals to qualify for ISO (International Standardization for Organization) certification. This new regulation makes it compulsory for hospitals to include palliative care programs if they want to receive ISO certification.

Lynna has built and refined her model of care in partnership with many organizations including private and public hospitals and clinics, citizen organizations (COs), individual partners including health professionals, social workers, parents and families of the children, universities, professional associations, private businesses and corporations.

Millions of patients with life-threatening conditions suffer severe pain and have many other physical, psychosocial, and spiritual problems. The World Health Organization (WHO) advocates that palliative care should be incorporated as a component of care in healthcare policies and programs, yet data indicate that the vast majority of the world’s population does not have access to palliative care. This results in unnecessary suffering, particularly among the poor and the underprivileged. There is an estimated 11, 000 new cases of childhood cancer per year in Indonesia. In the greater Jakarta area alone, with a population of over 12 million people, there are an estimated 650 new cases of pediatric cancers per year. Most of them are in families who cannot afford to pay for medical treatment.

Even though some palliative care services have been available in Indonesia since 1992, the government issued new regulations in 2007, which made palliative care legal only under the umbrella of a hospital license and limited to adult care. Despite increasing rates of childhood cancer and HIV/AIDS in Indonesia, there has been no palliative care for children. The number of healthcare professionals capable of providing palliative care for children remains limited since there is no organized education for them in this field of medicine.

Furthermore, the drugs to relieve the pain for dying children are available, but inaccessible. In spite of a WHO directive in 1986 that endorsed the inclusion of opioid in the national drug policy, the Indonesian government’s drug policy tightly controls the provision of opioid due to the fear of drug abuse, thereby limiting supplies in the market, leaving patients to remain suffering from terminal cancer and late-stage AIDS.

Healthcare around the world is dedicated to healing. Doctors and nurses seek a cure and find it very difficult to stop interventions even when they realize there is no hope for cure. Getting acceptance of this fact from doctors and nurses as well as patients requires the whole system to adapt its culture.

The emotional and financial suffering of families is immense. A child’s sickness can condemn the family to poverty. Due to long stays in hospitals that are far from home and travel to and from hospitals for treatments and chemotherapy, parents can often lose their jobs and income, leaving the entire family financially devastated.

Lynna established Yayasan Rumah Rachel (Rachel House Foundation) to provide palliative care for children with life-threatening conditions. Rachel House offers palliative care in home settings, where patients can be cared for in a familiar environment. To abide by regulations, she works under the umbrella of Ichsan Medical Center in South Jakarta.

Initially, since Lynna’s goal was to offer palliative care for poor children and home-based care did not exist, she intended to set up sixty rooms in the hospital as a hospice ward system. This didn’t work due to the financial burden to families and because dying patients wanted to go home. This realization was the impetus that caused Lynna to establish Rachel House, from which trained nurses, under the supervision of a few dedicated physicians, could provide in-home care. Today, Rachel House is operated through four satellite areas covering the Greater Jakarta area including parts of West, North, East, and South Jakarta. The area is defined based on the poverty level, number of children with HIV/AIDS and cancer, early detection data compiled from public health centers, and referrals from the health cadre or midwives.

Since pediatric home-based palliative care is a new concept in Indonesia, Lynna understands the need to advocate at many levels of the system—hospitals, universities, doctors, nurses, patients, and regulatory agencies. However, doctors were resistant, causing Lynna to adopt a more flexible, non-dogmatic approach, where she listened to the nurses and families of patients and adapted her model in order to reach her vision.

Nurses play a vital role for Rachel House. They are in charge of managing the satellites, advocating for pediatric palliative care services to hospitals and health providers, reaching out for new patient referrals, providing home-based care to the patients and training the caregivers, mediating between patients/families and physicians, and helping families during bereavement. Their presence helps build better communication between physicians and families to avoid miscommunication and frustration.

Through the satellites, Lynna has further ensured access to opioid, especially oral morphine or opioid analgesic for cancer pain relief. In treating severe pain among cancer patients, this type of medication is most effective, and cannot be substituted by other types of therapeutic medicine. Rachel House has developed a partnership with pharmacies nearby the satellites and local COs to supply this medicine.

By developing a competent and professional cadre of nurses to provide palliative care, Lynna finally gained support of physicians and key hospitals. She coordinated outside expert training and mentorship in palliative care from Australia and Singapore that has been used to mobilize hundreds of physicians and nurses from different hospitals in Jakarta to take part in training and understand the hospice philosophy. Respected international experts enhanced credibility for Rachel House. Rachel House is strict about service monitoring and audits to maintain the quality of post-training activities.

Historically, medical intervention in the national health system starts at the local level and builds to bigger medical institutions, which hold the prestige and power and offer the most comprehensive care. However, Lynna’s intervention is decentralized, with information and delivery flows in multiple directions. Now medical institutions can send referrals to non-medical institutions and patients’ records can go with them, wherever they are referred. This is possible due to prolonged engagement and education with key members in healthcare centers, with clinicians, by recruiting champions (physicians and community leaders) to support palliative care and related activities, and a team approach to generating referrals. In addition to the hospitals, Rachel House also receives patient referrals from other sources including shelters of the Indonesia Cancer Foundation, public health centers, individual physicians, or communities where terminally ill children are located.

The hospital administrators now see that it is in their interest to cooperate with the new system. Overcrowding of hospitals, especially in urban areas is a serious problem that Rachel House helps to solve.

Due to nurses’ crucial role in delivering the care, Lynna has lobbied the Higher Education of Health Science and the Nursing School of Esa Unggul University to integrate pediatric palliative care nurse training into their curriculum. She is also in the process of developing Rachel House as the Center of Excellence, working together with RSCM general hospital and Dharmais Cancer Hospital, the district public hospitals, and the Puskesmas surrounding the satellites. Lynna has made an agreement with ERC University in Singapore to develop the curriculum. The Center of Excellence will be the training and advocacy base for a new profession—home-based caregivers. It will attract members from medical or non-medical backgrounds and build skills resulting in certification for delivering palliative care.

Lynna’s strategy designates the children and their families as the decision-makers. Lynna and her Rachel House team trains parents to evaluate how much and what kind of support is needed for their children. A plan is then developed with an oncologist or HIV consultant. The parents are also taught about the patient referral process. To support the parents, Lynna trains health cadres at the village level about early detection, basic identification, and the referral system.

To ensure sustainability, Lynna mobilizes resources from volunteers, doctors, and funding agencies. She is also working on running a fee-based training for the Center of Excellence, online fundraising to mobilize corporate funding, and developing a social business, Absolute Impact.

Lynna was born in Medan, North Sumatra in 1960. During the colonial period, her father (then age 9) and grandmother migrated from China to Brastagi, North Sumatra. They made a living selling vegetables. After his mother died, Lynna’s father struggled as a packing boy. Uneducated but determined, at the age of sixteen, he built a tobacco factory and later succeeded in his business. The 1960s were a turbulent time in Indonesia. Although comfortable economically, Lynna grew up with insecurity.

Lynna was sent to Singapore for secondary school and to Australia for university. She studied economics and accounting. It was in Australia that Lynna started to feel security under the guidance of a close-knit and loving family with whom she lived. She gained positive affirmation and confidence in these important years.

After graduation in 1990, Lynna returned to Indonesia to make peace with her past and dived into the heady world of high finance. She quickly moved up in the top global and regional institutions involved in investment, corporate banking, and debt capital markets. Although she found the constant travel, high-stakes negotiations, fast-paced problem-solving and financial success compelling, she began to question the ethics and values of decision-makers, institutions, and her own place in this world.

In 2001 Lynna quit her job to co-found and lead a consulting business focused on business restructuring for companies recovering from the 1997 financial crisis. She explored issues of poverty and development and experimented with using her business and personal skills and connections to improve people’s lives. In 2003 Lynna raised the resources for doctors and medical teams from Singapore to conduct reconstructive surgeries for children with harelip and cleft palate in Indonesia. She raised funds, mobilized doctors and nurses, and 300 children benefitted on the Island of Sumba as a result.

In 2004 Lynna’s close friend, Rachel Clayton, died after a thirteen-year battle against cancer. Unlike Rachel, who had all the resources to access the best care available, Lynna knew there were a lot of terminally ill children from poor backgrounds who have no access to care. She began an exploration of hospitals and villages, studying health and disease with the most respected health leaders in Indonesia. In the hospitals, Lynna was moved by the suffering of the children—dying from HIV and cancer far from home. Lynna decided to dedicate her life to ensuring that poor dying children have access to end-of-life care, free from pain. In order to do this, she had to change the system.