The Role of Yayasan Paliatif Surabaya ( YPS ) in Implementation of Palliative Care drg. Lizza C. Hendriadi Universitas Brawijaya Malang Malang, 3 July 2018

Awards Award from RSUD Dr. Soetomo on World Palliative Day and 70th anniversary RSUD Dr. Soetomo, 26 October 2008. Award from Surabaya Mayor on National Health Day, 12 November 2009. Award from Governor of East Java on 21st National Palliative Day, 2013. Award from Centre of Palliative Care (P3BN) RSUD Dr. Soetomo – FK Unair for supporting palliative patients and their families, 21 Juni 2014

What is PALLIATIVE CARE? Origin (Latin): Palliatus (cloak, blanket). Palliative Care is an integrated system of care that improves the quality of life by providing pain and symptoms relief, spiritual and psycho-social support from diagnosis to the end of life and bereavement. - World Health Organization, 2005 3

Palliative care is generally implemented for degenerative or chronic diseases affecting the lungs, kidney, heart, and also HIV/AIDS, stroke, diabetes mellitus, geriatric diseases, etc. However in Indonesia it is prioritized for cancer due to the high mortality rate and high costs of treatment. At RSUD Dr. Soetomo, Palliative Care belongs to the Department of Oncology.

CANCER DISEASE DATA According to the Indonesian Ministry of Health, cancer incidence is 0.1% of population and 50% of those are detected in late stages. It is estimated that globally 9 million people died from cancer in 2017, and is predicted to increase to 13 million in 2030. Cancer treatment costs IDR 2.1 trillion (~ USD 150 million) in 2017, second in place after heart attack. - Indonesian Social Security (BPJS) Lately there are more and more cancer patients especially in LOW INCOME segments of society. DO WE NEED PALLIATIVE CARE IN INDONESIA? Lately there are more and more cancer patients especially in low-income segments of society. According to the Indonesian Health Ministry: Cancer patients account for 0.1% of population, and 50% of those are in late stages. It is estimated that 9 million people died from cancer in 2017, and this number is predicted to increase to 13 million annually in 2030. According to BPJS, cancer treatment costs IDR 2.1 trillion in 2017, second in place after heart attack. 5

Establishment of Yayasan Paliatif Surabaya Background: Palliative Care in Indonesia started by a group of palliative doctors in RSUD Dr. Soetomo Surabaya. They were having a huge challenge, especially in financial aspect. Many aspects of palliative care are not covered by hospitals, such as: 56.4% of patients cannot afford medications Orphans cannot afford to continue education The Palliative Care group of RSUD Dr. Soetomo initiated to set up a palliative foundation then named Yayasan Paliatif Surabaya on 17 April 2001. The initiatives are: Providing free palliative medicines Scholarships Volunteer groups STARTING FROM PAIN-FREE PALLIATIVE CARE CLINIC RSUD DR. SOETOMO 6

YPS LOGO Butterfly Just like human life, beautiful yet prone to diseases. Circle The chain of suffering endured by the cancer patient. Heart Surabaya Palliative Foundation are willing to give their heart and love to all cancer patients so they can be free of their suffering. A Pair of Hands Always support cancer patients and their families. www.paliatifsurabaya.com 7

VISION TO RELIEF CANCER PATIENTS FROM THEIR SUFFERING. Mission TO Support operations and development of Palliative Care for cancer patients. www.paliatifsurabaya.com

PROGRAM & THE IMPLEMENTATION 5-POINT PROGRAM & THEIR IMPLEMENTATION www.paliatifsurabaya.com 9

I. FREE PALLIATIVE MEDICINES FOR LOW-INCOME PATIENTS Patients from Polyclinic of Palliative Care (Poly-Palliative) in partnership with YPS: RSUD Dr. Soetomo RS Baptis Batu. Supporting Home care by team of doctors, therapists, nurses, and volunteers. COMPLIMENTARY MEDICINES FOR LOW-INCOME PATIENTS For low-income patients arriving at Poly Palliative Home care by team of doctors, nurses, and volunteers POLY PALLIATIVE PARTNERSHIP WITH YPS: RSUD Dr. Soetomo RS Baptis Batu RSK St. Vincentius a Paulo (RKZ) 10

II. EDUCATION FOR ORPHANS Up-to high school scholarship for children of deceased patients (ex cancer patients from YPS hospital partners). 2. EDUCATION FOR ORPHANS Up-to middle school scholarship for descendants of deceased patients (ex Cancer patients from YPS hospital partners) 11

III. IMPROVING THE QUALITY & QUANTITY OF PALLIATIVE VOLUNTEERS YPS supports seminar and training to upgrade the skill of palliative volunteers. Traning is conducted by P3BN RSUD Dr. Soetomo & Airlangga University School of Medicine, Surabaya. YPS supports new palliative volunteers recruitment. Volunteers from hospitals : Dr Soetomo. RS Baptis Batu. Community Health Clinic (Puskesmas). From religious organizations : Alfalah. Kristus Raja. Etc. 3. IMPROVING THE QUALITY & QUANTITY OF PALLIATIVE VOLUNTEERS Training for palliative volunteers (REPAL) by P3BN RSUD Dr. Soetomo & Airlangga University School of Medicine, Surabaya. YPS assists in Training, seminar, etc. Volunteers are needed because: Volunteers have diverse background They meet the needs of patients with diverse background as well REPAL provide companionship for patients and their families Volunteers serve all patients equally without discrimination of any race or certain religion. 12

Palliative Volunteers Those who sincerely and freely contribute their effort for palliative care. They act as intermediaries between doctors and patients with their families. Palliative volunteers consist of people from diverse background, social status, and expertise. Two groups of volunteers: Direct physical & psychological care of patients Supporting group: hotline services, fundraising, public education, etc. Palliative Volunteers (REPAL) From the hospitals: REPAL Dr. Soetomo REPAL RS Baptis Batu From community organizations: Alfalah volunteers Kristus Raja volunteers In the advent of The 13th Asia Pacific Hospice Palliative Care Conference (APHC) in Surabaya on (dates), we aim to hit our target of recruiting 1000 volunteers. 13

IV. SOCIALIZATION & EDUCATION Through Mass Media Donation of treatment rooms at RS Bhakti Dharma Husada (government hospital) on 11 February 2011, attended by Indonesian Health Minister, the late dr Endang Rahayu Adiningsih and Surabaya Mayor, Tri Rismaharini. Public & Scientific Seminar. Free consultation events. Produce and distribute brochures, books. DVD of Palliative Gymnastics is composed by volunteers Donation of ambulance for palliative home care RSUD Dr. Soetomo on 13 June 2011. Visits to comfort cancer patients & family. 4. SOCIALIZATION & EDUCATION Public Seminar Free consultation Circulating brochures, books, DVDs Visits to comfort cancer patients Carnival ”Surabaya Bebas Nyeri Kanker (Surabaya Free of Cancer Pain)” at Taman Bungkul Surabaya, followed by 6000 participants on 25 October 2009. Declaration of “Surabaya City of Palliative Care” on 15 May 2010. Donating treatment rooms at Bhakti Dharma Husada Hospital (government hospital) on 11 February 2011, attended by Indonesian Health Minister. Ambulance lending for palliative home care RSUD Dr. Soetomo on 13 June 2011 Officiation of Palliative Park on Jalan Soka Surabaya, with mass physical activities on 11 February 2012 Prof Sunaryadi’s Book launching “Bapak Paliatif Indonesia” and the commemoration of 16 years of Palliative dedication, on 29 April 2018 Carnival of ”Surabaya Bebas Nyeri Kanker (Surabaya Free of Cancer Pain” Officiation of Palliative Park Jl. Soka, inaugurated by Surabaya Mayor, Tri Rismaharini on 11 Februari 2012. Declaration of “Surabaya City of Palliative Care” on 15 May 2010. 14

“Prof. Sunaryadi : Sepenggal Kisah Bapak Paliatif Indonesia” Book Launching “Prof. Sunaryadi : Sepenggal Kisah Bapak Paliatif Indonesia” (Prof . Sunaryadi : A Life Episode from The Father of Indonesian Palliative Care) In occasion of the 16th Anniversary of YPS, 29 April 2017, we dedicate this book to: All Indonesians, especially the people of Surabaya. Prof. Raden Sunaryadi Tejawinata, dr. SpTHT(K-Onk), FISC, FAAO, PGDPall.Med.(ECU) as The Father of Indonesian Palliative Care together with his wife Prof. Netty Ratna Hutari Tejawinata, dr.SpA(K-Hem.Onk.), PGDPall.Med.(ECU) as The Indonesian Palliative Couple who dedicate their lives to develop Palliative Care in Indonesia.

V. FUND RAISING FOR YPS ACTIVITIES Fundraising events : World Palliative Day Concert, 8 October 2005. Social Gathering & Gala Dinner with Surabaya City Mayor, Miss Indonesia, 750 donators, patients, orphans, and volunteers on 27 August 2008. 20th anniversary of Indonesia Palliative Care with the theme “Paliatif untuk Indonesiaku (Palliative for Indonesia)” on 18 February 2012, attended by Governor of East Java, and covered by various mass media. 5. FUND RAISING FOR YPS ACTIVITIES YPS received donations from supporters Fundraising events: World Palliative Day Concert, 8 October 2005 Social Gathering & Gala Dinner with Surabaya City Mayor, Miss Indonesia, 750 donators, patients, orphans, and volunteers on 27 August 2008 20th anniversary of Indonesia Palliative with the theme “Paliatif untuk Indonesiaku (Palliative for my Indonesia)” on 18 February 2012, attended by Governor of East Java, and covered by mass media. 16

Testimonial : Ms. Marsih, cervical cancer patient Three months ago I could only lie on my bed and became a burden for my family. When I came to the Palliative Care unit of RSUD Dr. Soetomo, the doctors, nurses, and volunteers there really took great care of me. I’m very grateful for their support. Now I’m no longer a burden and can enjoy the rest of my days with my husband and children. Mr. Legiman, colon cancer patient Thank goodness, the gracious people from YPS came and brought me gifts and prayer beads. Moreover, they provided me with care and encouraged me to be strong and faithful through my difficult time. Ms. Sulikah, breast cancer patient The YPS team came to my humble home and showered me with love and care. And they did so voluntarily it’s really amazing!

13th Asia Pacific Hospice Conference 1 – 4 August 2019 Surabaya - Indonesia Appointment by Asia Pacific Hospice Palliative Care Network (APHN) to host the 13th Asia Pacific Hospice Conference (APHC) in Surabaya. Cooperation between Indonesia Palliative Society (MPI) and APHN on 30 July 2017. We aim to hit our target of recruiting 1000 volunteers.

OUR HOPES FOR THE FUTURE Initiate a comprehensive and integrated cancer prevention and treatment: a multi-disciplinary approach for 4 aspects for cancer: prevention, early detection, treatment and palliative care. Set up a palliative care clinic at every hospital for degenerative diseases especially cancer. Implement Palliative Care in Indonesia to other degenerative diseases. Palliative Care Specialty at universities to fulfill high demand. Recruit more people to join as donators and volunteers. OUR HOPES FOR THE FUTURE Health Ministry requires poly-palliative care unit in every hospital. Clinics must understand and implement palliative care for degenerative diseases especially cancer. Comprehensive and integrated cancer prevention and treatment: a multi-disciplinary approach for 4 aspects to address cancer: prevention, early detection, cure, and palliative care More people will join as donators and volunteers. 19

Mari Bersama Membuka Hati (Let’s Open Our Hearts Together) POEM READING: Mari Bersama Membuka Hati (Let’s Open Our Hearts Together) - by LIZZA C. HENDRIADI