Aru W. Sudoyo, MD, PhD, Indonesian Cancer Foundation, Yayasan Kanker Indonesia, Jalan Drive, GSSJ Ratulangi No. 25, Menteng, Jakarta, 10350, Indonesia; e-mail: moc.liamg@oyodusura.
Received 2022 Sep 2; Revised 2023 Jan 11; Accepted 2023 Feb 27. Copyright © 2023 by American Society of Clinical OncologyLicensed under the Creative Commons Attribution 4.0 License: https://creativecommons.org/licenses/by/4.0/
See "Improving Equity Across Cancer Care Continuum in Asia Pacific" in volume 9, e2300056.Globally, the cancer burden is increasing with significant morbidity and mortality. In 2020, there were more than 19.3 million new cancer cases and 10 million cancer-related deaths worldwide. Studies have shown that the number will increase at an alarming rate, reaching an estimation of 29.4 million cases in 2040. 1,2 There continues to be significant disparities between higher- and lower-income countries, where the burden is greatest in the latter, with a rapid increase in cancer incidence, morbidity, and mortality. 1-4
Community- and home-based palliative care is essential to ensure access of care for patients with cancer. This study aims to give insight from Indonesia's practice and strategies in palliative care development.
Knowledge GeneratedIn large diverse population, key for implementation is multilayer strategic collaboration from policy stakeholders, professionals, nonprofit organizations, and empowering volunteers from community.
RelevancePoints of strategies from Indonesia may be applied in other countries with similar traits of development in large diverse community.
The number of cancer cases found in the advanced stage, along with their burden and suffering, signifies the need for good palliative care. One of the Union for International Cancer Control (UICC) four key pillars of advocacy to address global equity gap in cancer care is ensuring at a minimum a basic supportive and palliative care service for all. 2 ASCO also has published multiple statements to support the integration of palliative care to enhance benefits to patients across cancer journey. 5 However, from 40 million people globally in need of palliative care, just 14% receive it, predominantly in high-income countries. 6
Indonesia is the largest archipelago country in the world in its development stage and has an urgent increasing burden of cancer (1.8 every 1,000 people), with the majority of cases (70% from 240,000 incidence per year) found in the advanced stage. 7-9
Considering the cancer burden in the advanced stage, it was estimated in 2018 that 662,261 Indonesian people are in need of palliative care support. 7,8,10 Accordingly, where the need for palliative care is not met, patients with terminal and incurable illnesses suffer total pain and burdensome costs. 6 Also, in the terminal stage, patients would opt for home care for end-of-life management in consideration of cost and family ties and thus the need for good home-based palliative care in the community. 11
As a challenge, Indonesia has a large population (240 millions people, fourth largest in the world) and a geographical status of 13,466 island and 37 provinces which spread between 1.3 million km. 12 This large area and variance in geographical and topographical characteristics between provinces result in cultural and custom differences between provinces. 13
In terms of strength, Indonesia has advantages in the community to aid in cancer and palliative care management, including the Indonesian Cancer Foundation (ICF), a uniquely tiered population system, active community participation through health care volunteers, and the integration of resources in the national health care system.
ICF (Yayasan Kanker Indonesia) is a nonprofit organization with social and humanity vision in health care, especially in cancer care. The ICF's mission was to increase community awareness and participation in cancer care. The ICF programs aim to support cancer care through promotive, preventive, supportive, and palliative care. Currently, the ICF has 114 branches throughout Indonesia and serves as the largest cancer foundation network. 14
Considering that cancer care would only thrive with multisectoral involvement, the ICF would conduct its services through cooperation with multiple stakeholders: professional organizations, NGO, and the private and business sectors, nationally and internationally. Additionally, unique to other foundations, the ICF has strong ties with the government, including the governor's leadership role. Thus, the program is in conjunction with assisting local governments with cancer care. The ICF plays a role in filling the gap between government health care programs and community needs. 14
Since 1995, the ICF has received international palliative care training and started home hospice care programs to increase cancer patients' quality of life and provide dignity for quality of death. In accordance with the WHO guidelines for the implementation of home-based palliative care, the ICF has set up a team of doctors, nurses, and volunteers to serve vulnerable patients at home. 15,16 For 12 years since its conception, the ICF has served 621 patients in which 79% of them passed peacefully at home after a median of 1-2 months of care with the ICF palliative team. 15 The service continues until now (2022), with an average of 80 services per year, including the development of hospice buildings in South Jakarta. 14
In addition to direct service to patients, the ICF also implements the WHO guidelines for community-based palliative care by providing public education and socialization of programs in conferences. 15,16 From 2015 to 2022, the ICF has conducted palliative care training for caregivers in the community, volunteers, and health care professionals in 10 provinces, with a total of 2,353 participants receiving training. Some of these trainings are joint collaborations with the local district of health and international foundations. 17
In 2015, an attempt to integrate home palliative care with the government and primary health care system was also made by the ICF Jakarta chapter. 18 This is in consideration of Daerah Khusus Ibukota (DKI) Jakarta as a capital city with a significant and increasing burden on patients with cancer, including nationwide patients coming to Jakarta for advance treatment. 19 Furthermore, there was congestion at the hospital level, partly because of the unavailability of adequate home care/community-based palliative services. 18
The ICF Jakarta Palliative call center and palliative home care service were initiated to allow patients with terminal disease to be discharged early and prevent hospital readmission with good-quality home care services. Palliative call center service includes 24-hour patient consultation with trained nurses and doctors. After referral from the hospitals, patient care was continued at home until death and bereavement. 18
Bereavement services could start in hospitals from anticipatory grief moments, identification of potential complicated grief, and follow-up at home by the ICF team, either by phone calls or direct visitations. The providers of bereavement services include hospital counseling/chaplaincy teams and volunteers trained by the ICF. 18
In the 2022 report, the ICF Jakarta palliative service has served 355 patients, with the majority (67%) passing away at home, mitigating the tendency for patients to stay in the hospital until dying. 18 This finding aids in reducing hospital congestion and improving cancer care quality in Jakarta, Indonesia. A multidisciplinary team from the hospital and community is arranged, from specialists to social workers and volunteers, to ensure maximum comfort for the patient. 19 During COVID-19 pandemic in 2019-2022, ICF Jakarta continued its service and served 731 teleconsultation services and remote delivery of symptomatic medicines to ensure that patients at home still received essential palliative care service. 20
ICF Jakarta collaborates with the District of Health government in care provision and education, ensuring regional coverage and setting a principal model for other regions in Indonesia. Concurrently, ICF Jakarta also trained community health care volunteers (CHVs) in cancer prevention and early detection as well as in palliative care provision in the community. In 2015-2022, ICF trained 611 volunteers in palliative care in collaboration with the community family welfare program. 20 In the consequent years, 100 of these volunteers received further advanced training and refreshment courses for practical issues in home and community-based palliative care. These community volunteers serve as extensions of direct care in the neighborhood. 20
Standard operating procedures for health care professionals and volunteer joint work differ according to each health care center policy. In Jakarta, volunteers may report findings of patients in need of medical attention to local health care centers and vice versa; the health care center may ask for volunteers' help in follow-up for the patient's condition. The ICF has regular volunteer meetings for training and refreshment, which also serve as an opportunity for consultation with health care professionals. At times, joint home visits are conducted, for example, with a patient whose volunteers know earlier for better acceptance of medical professionals visiting home. Additionally, health care professionals may perform joint visits to introduce volunteers to patients to assist in future companionship and/or follow-up visits. 20
Indonesia has a unique population system that allows for effective implementation of health care and social support for the smallest family unit. Indonesia's population system is tiered from the smallest unit of family to Rukun Tetangga (RT/neighborhood), Rukun Warga (RW/large neighborhood), Kelurahan (urban village), Kecamatan (subdistrict), Kabupaten (regency/municipality), and province. According to the Department of Population and Civil Registry Office, Ministry of Home Office data, and Indonesia's administrative areas, there are 768,000 RTs (neighborhood), 552,000 RWs (neighborhood), 83,381 Kelurahan (urban village), 514 Kabupaten (regency), and 37 provinces (Fig (Fig1 1 ). 21