Palliative Care in Kosovo Preliminary Policy Recommendations for a National Program Presented to the National Board for Cancer Control and the Ministry of Health of the Republic of Kosovo Prepared by Io Jones, Emily Schneider, and A.J. Speigelman PRS Policy Brief 1819-14 September 2018 Dartmouth Global Health Policy Lab The Class of 1964 Policy Research Shop The Global Health Initiative at the Dickey Center for International Understanding ACKNOWLEDGMENTS Prepared by Io Jones, Emily Schneider, and A.J. Spiegelman. This research was made possible through a collaboration between the University Clinical Center of Kosovo (UCCK), the National Board for Cancer Control (NBCC), the Nelson A. Rockefeller Center for Public Policy and the Social Sciences, and the Global Health Initiative at the John Sloan Dickey Center for International Understanding at Dartmouth College. Our partners at UCCK, NBCC, and Action for Mothers and Children (AMC) provided invaluable guidance and advice throughout the research and writing processes. Specifically, this work would not have been possible without the patience, generosity, and goodwill of Dr. Suzana Manxhuka-Kerliu, Dr. Ilir Hoxha, Mrika Aliu, and Dr. Dafina Ademi. This project was supported by three peers at UCCK; we would like to extend our thanks to Dr. Dijon Musliu, Flaka Shoshi, and Berat Fazliu. The research process and final product benefited substantially from ongoing support provided by Dr. Ronald G. Shaiko and Anne Sosin from Dartmouth College. We thank the health practitioners, administrators, policymakers, and other stakeholders who volunteered their time to participate in interviews and welcomed the research team with hospitality. Finally, we thank the Ministry of Health for considering these recommendations to inform evidence-based policymaking and improve the quality of life and death in Kosovo. This report was written by undergraduate students at Dartmouth College under the direction of professors in the Nelson A .Rockefeller Center. The project was a collaboration between the Rockefeller Center and the Global Health Initiative at the Dickey Center for International Understanding, the project funder. Contact: Nelson A. Rockefeller Center, 6082 Rockefeller Hall, Dartmouth College, Hanover, NH 03755 http://rockefeller.dartmouth.edu/shop/ • Email: [email protected] Dickey Center for International Understanding, 6048 Haldeman, Dartmouth College, Hanover, NH 03755 http://dickey.dartmouth.edu/health • Email: [email protected] Table of Contents EXECUTIVE SUMMARY .......................................................................................................... 1 1. BACKGROUND ....................................................................................................................... 3 DEFINITION AND IMPORTANCE OF PALLIATIVE CARE ..................................................................... 3 GLOBAL CONTEXT ...................................................................................................................................... 3 Palliative Care Systems in the Balkans ................................................................................................................. 4 HEALTHCARE IN KOSOVO ......................................................................................................................... 4 Health System Context .......................................................................................................................................... 4 Health System Structure ........................................................................................................................................ 5 2. METHODOLOGY ................................................................................................................... 5 3. CURRENT STATE OF PALLIATIVE CARE ...................................................................... 6 GROWING NEED FOR PALLIATIVE CARE ............................................................................................... 6 Growing Cancer Burden in Kosovo ...................................................................................................................... 6 Need for Palliative Care: 5,802 cases in 2017., .................................................................................................... 7 STATUS OF PALLIATIVE CARE ................................................................................................................. 7 OVERVIEW OF CURRENT PALLIATIVE CARE DELIVERY ................................................................... 8 Primary Care Delivery ......................................................................................................................................... 8 Secondary Care ................................................................................................................................................... 10 Tertiary Care ...................................................................................................................................................... 11 Non-Governmental Organizations ...................................................................................................................... 12 4. KEY OPPORTUNITIES ........................................................................................................ 14 1. IMPROVE CONTINUITY OF CARE FOR PAIN AND SYMPTOM MANAGEMENT ........................ 14 Main Findings ..................................................................................................................................................... 14 Discussion ........................................................................................................................................................... 15 Policy Options..................................................................................................................................................... 15 2. INCREASE ACCESS TO THE ESSENTIAL MEDICINES FOR PALLIATIVE CARE ........................ 16 Main Findings ..................................................................................................................................................... 16 Discussion ........................................................................................................................................................... 19 Policy Options..................................................................................................................................................... 19 3. INCREASE HUMAN RESOURCE CAPACITIES AND COMPETENCIES .......................................... 20 Main Findings ..................................................................................................................................................... 20 Discussion ........................................................................................................................................................... 22 Policy Options..................................................................................................................................................... 22 4. IMPROVE HEALTH EDUCATION AND HEALTH CARE LITERACY .............................................. 23 Main Findings ..................................................................................................................................................... 23 Discussion ........................................................................................................................................................... 24 Policy Options..................................................................................................................................................... 25 5. INTEGRATE SOCIAL, EMOTIONAL, AND SPIRITUAL CARE ......................................................... 25 Main Findings ..................................................................................................................................................... 26 Discussion ........................................................................................................................................................... 27 Policy Options..................................................................................................................................................... 27 5. DELIVERY FRAMEWORK ................................................................................................. 28 STAGE 1 ........................................................................................................................................................ 28 STAGE 2 ........................................................................................................................................................ 31 STAGE 3 ........................................................................................................................................................ 34 6. CONCLUSION ....................................................................................................................... 35 APPENDICES ............................................................................................................................. 36 APPENDIX A: CASE STUDIES OF PALLIATIVE CARE IN THE BALKANS ....................................... 36 Albania ...............................................................................................................................................................