PDF version

Eric Krakauer,^1,2 Sami Ayed Al-Shammary,^3,4 Balaji Duraisamy,³ Maryam Rassouli,⁵ Reda Rizkallah,⁶ Samaher Fadhil⁷ and Hibah Osman^2,8,9

¹Department of Global Health & Social Medicine, Harvard Medical School, Boston, The United States of America (Correspondence to: E. Krakauer: This e-mail address is being protected from spambots. You need JavaScript enabled to view it ). ²Division of Palliative Care & Geriatric Medicine, Massachusetts General Hospital, Boston, The United States of America. ³Palliative Care Unit, Comprehensive Cancer Centre, King Fahad Medical City, Riyadh, Saudi Arabia. ⁴Centre for Postgraduate Studies in Family Medicine, Ministry of Health, Riyadh, Saudi Arabia. ⁵Cancer Research Center, Shahid Beheshti University of Medical Sciences, Tehran, Islamic Republic of Iran. ⁶Palliative Hospice Care Service, Children’s Cancer Hospital, Cairo, Egypt. ⁷Children’s Welfare Teaching Hospital, Medical City, Baghdad, Iraq. ⁸Dana Farber Cancer Institute, Boston, The United States of America. ⁹Balsam Lebanese Center for Palliative Care, Beirut, Lebanon

Abstract

Background: There is a global agreement that palliative care should be universally accessible. However, in low- and middle-income countries and conflict zones, most people lack access to it. In the Eastern Mediterranean Region (EMR), no country has achieved integration of palliative care into its health care system, and only 4 countries have better-than-isolated palliative care provision.

Aims: To promote and guide palliative care improvement in the EMR, with case studies showing the successes and challenges of palliative care implementation from 4 countries in the Region.

Methods: We developed a structured, succinct, case-writing format and invited palliative care leaders in the EMR to use it to describe successes and challenges in palliative care implementation in their countries.

Results: Within the EMR, in addition to many challenges and needs, there are examples of successful palliative care policy development, community-based service creation, and paediatric palliative care implementation.

Conclusion: The experiences of the regional palliative care leaders documented in succinct, structured case studies, can help guide regional palliative care development in the EMR and other regions.

Keywords: Palliative care, EMR, integration, community-based service

Citation: Krakauer E; Al-Shammary SA; Duraisamy B; Rassouli M; Rizkallah R; Fadhil S; et al. Palliative care models and innovations in 4 Eastern Mediterranean Region countries: a case-based study. East Mediterr Health J. 2021;28(8):622–628. https://doi.org/10.26719/emhj.22.038
Received: 05/05/21; accepted: 20/11/21

Copyright © World Health Organization (WHO) 2022. Open Access. Some rights reserved. This work is available under the CC BY-NC-SA 3.0 IGO license (https://creativecommons.org/licenses/by-nc-sa/3.0/igo)

---

Introduction

World Health Assembly Resolution 67.19 expresses the unanimous conviction of the 194 Member States of the World Health Organization (WHO) that palliative care is “an ethical responsibility of health systems” and that universal access to palliative care is necessary for achievement of Universal Health Coverage (UHC) (1). There is global agreement that palliative care should be integrated with disease prevention and treatment and as an essential part of primary health care (2–5). The types of suffering and palliative care needs vary by geopolitical situation, socioeconomic condition and culture (6). In general, people in low- and middle-income countries (LMICs) and in conflict zones endure less healthy social conditions and have less access to disease prevention, diagnosis and treatment and to social support than people in high-income countries (HICs), and thus have greater palliative care needs. Yet, only a small minority of people in need of palliative care in LMICs have access to it (7, 8). None of the 22 countries of the Eastern Mediterranean Region (EMR) has achieved integration of palliative care into its healthcare system, and only 4 countries have better than isolated palliative care provision (7).

In 2019, an Eastern Mediterranean Region Palliative Care Expert Network (EMRPCN) was convened by the WHO Office for the Eastern Mediterranean (WHO/EMRO) in collaboration with the American University of Beirut Medical Center and Harvard Medical School with the long-term goal of developing strategies and pathways for integrating palliative care into the regional healthcare systems. There was agreement that the strategies should provide guidance on national palliative care policy development, accessibility of essential medicines including morphine, training of healthcare professionals in palliative care, implementation of palliative care services, and quality assurance (9). However, considering the large differences within the EMR in culture, economics and social stability, it was agreed that the strategies should remain general or contain different guidance for different cultural, economic or social conditions (10–12). Ideally, the strategies should be based upon studies of the types, severity, prevalence and duration of suffering in each country (8, 13) and informed by case reports of successes in palliative care integration. We present here such cases produced by EMRPCN.

Methods

Members of EMRPCN were invited to submit concise (750–1500 words) reports of specific palliative care models or innovations that were adapted to the needs of a specific population and to the country’s health system and potentially applicable elsewhere. Proposed topics included:

creation of laws, policies or regulations

financing

essential medicine accessibility, especially oral immediate-release morphine

education and training

implementation of clinical services

research / evidence building / measurement / quality improvement

community outreach and engagement of civil society

health system strengthening and promotion of UHC

Each writer was provided with a case-writing format and instructions adapted from those developed by the Case Writing Team of the Global Health Delivery Project at Harvard University (14). They were requested to tell the story of a palliative care model or innovation by responding briefly to a set of questions (Table 1). Submitted case reports were edited where necessary to conform to the prescribed structure and length.

Results

Full case reports were submitted by palliative care leaders from Egypt, Islamic Republic of Iran, Lebanon and Saudi Arabia (Table 2). One report addressed policy, 2 focused on community-based services, and 1 reported on paediatric palliative care.

Discussion

Access to palliative care is limited in LMICs worldwide (8,15) and in the EMR (7,16,17). Barriers to integration of palliative care into healthcare systems in the EMR include: absence of national policies on palliative care; lack of training and practice opportunities for physicians and other healthcare professionals; inadequate staffing of existing palliative care services; lack of opioid analgesics; and lack of understanding of palliative care among policy-makers and the general public (10,15,16). Our case reports address several of these barriers and provide examples of methods to overcome these barriers.

Common barriers mentioned in the reports include lack: of national palliative care policy or strategy; of an official specialty in palliative care; of hospital and community-based palliative care programmes and community-based hospice programmes; of understanding of palliative care among healthcare providers and the public; of palliative care training for medical and nursing under- and post-graduates; and of opioid accessibility for patients in need.

While all 4 cases mentioned the necessity of government policies and regulations to enable implementation and scale-up of palliative care, the case from Lebanon focuses on 1 crucial policy: approval of an official medical specialty in palliative care. While most palliative care is provided by generalist clinicians and specialists in other disciplines, palliative care specialists are needed to serve as teachers, implementers, and leaders of palliative care departments and services (18). Recognition of palliative care as an official medical specialty and training accredited palliative care specialists, as has begun in Jordan and Saudi Arabia (18, 19), are critical and necessary steps in creating and scaling-up high-quality, sustainable palliative care training and services and obtaining health insurance coverage for these services. The case report from Lebanon provides an example of how determined and skilful advocacy can achieve this goal.

Two cases describe the inaccessibility of opioid analgesics due to overly restrictive regulations, lack of training in opioid therapy, or unjustified fear of opioids. While no cases specifically addressed strategies to overcome these barriers to palliative care, multiple case reports have been published by participants in the International Pain Policy Fellowship (20–25). Unfortunately, no countries from the EMR participated in this Fellowship. We propose creation of a similar 2-year fellowship to assist EMR countries to develop balanced national opioid policies using the International Pain Policy Fellowship as a model.

Three of the cases address the inseparability of palliative care service implementation and training in palliative care (26–28). Integration of sustainable, high-quality palliative care services into healthcare systems requires an enabling foundation in government policy as well as coordination of opioid accessibility and training, and establishment of clinical services (9). If opioids are made accessible before appropriate prescribing regulations and training, they may either expire on the shelf or be prescribed injudiciously. If training is provided before opioids are available and before there are places to practice, the training is wasted and the trainees may become frustrated. If palliative care services are established before staff are trained and opioids are accessible, the quality of care may be poor.

In the EMR, as in other regions, most patients in need of palliative care are at home (3). For this reason, primary care physicians in the EMR have the potential to expand access to palliative care (29). Two cases have addressed integration of palliative care with primary health care as recommended by WHO (1, 2) and the importance of cultivating political support for palliative care integration.

The case from the Islamic Republic of Iran demonstrates the benefits of having a strong palliative care advocate within ministries of health to coordinate the key aspects of palliative care implementation. Based on government policy to enable palliative home care, the Nursing Deputy of the Iranian Ministry of Health and Medical Education led development of continuing nursing education courses in palliative and home care, and then advocated successfully for this training to be required for homecare nurses. The case from Saudi Arabia also indicates the importance of strong palliative care leadership within major medical centres. Based on government policy and the recognition that most palliative care needs are in the community, a palliative care leader at a major medical centre arranged to pilot integration of palliative care into primary care at an affiliated primary care centre, intensively trained family physicians in palliative care at the centre, and provided ongoing mentorship and supervision. This model of following training courses with long-term mentoring is more likely to improve trainees’ behaviour than training without follow-up (30). The cases also demonstrate the crucial relationship between primary care providers who provide basic palliative care in the community and palliative care specialists in referral hospitals who can provide clinical mentoring and case consultation and receive transfers of patients with complex problems.

Conclusion

Structured case studies such as those described in this paper can provide important guidance for healthcare planners and managers. Given that palliative care needs vary by location, culture, and socioeconomic and clinical environments, we propose that easily accessible libraries of case studies be made available in the EMR and other regions around the world.

Funding: None

Competing interests: None declared.

Modèles de soins palliatifs et innovations en la matière dans quatre pays de la Région de la Méditerranée orientale : étude de cas

Résumé

Contexte : Il existe un accord mondial sur le fait que les soins palliatifs devraient être universellement accessibles. Cependant, dans les pays à revenu faible et intermédiaire et les zones de conflit, la plupart des personnes n' y ont pas accès. Dans la Région de la Méditerranée orientale, aucun pays n'est parvenu à intégrer les soins palliatifs dans son système de soins de santé, et seuls quatre pays disposent d'une offre de soins palliatifs qui sont en voie d'intégration.

Objectifs : Promouvoir et guider l'amélioration des soins palliatifs dans la Région de la Méditerranée orientale, par le biais d'études de cas montrant les succès et les défis de la mise en œuvre des soins palliatifs dans quatre pays de la Région.

Méthodes : Nous avons mis au point un modèle de rédaction de cas structuré et succinct, et nous avons invité les responsables des soins palliatifs dans la Région de la Méditerranée orientale à s'en servir pour décrire les succès et les défis de la mise en œuvre de ces soins dans leurs pays.

Résultats : Dans la Région de la Méditerranée orientale, outre les nombreux défis et besoins, il existe des exemples de réussite concernant l'élaboration de politiques en matière de soins palliatifs, la mise en place de services communautaires et la mise en œuvre des soins palliatifs pédiatriques.

Conclusion : Les expériences réalisées par les responsables régionaux des soins palliatifs, qui sont documentées dans des études de cas structurées succintes, permettent de guider la mise en place des soins palliatifs au niveau régional.

نماذج الرعاية الملطِّفة وأوجه الارتقاء بها في أربعة بلدان بإقليم شرق المتوسط: دراسة حالة

إيريك كراكاور، سامي عيد الشمري، بالاجي دورايسامي، مريم رسولي، رضا رزق الله، سماهر فاضل، هبة عثمان

الخلاصة

الخلفية: ثمة اتفاق عالمي على أنه ينبغي إتاحة الرعاية الملطِّفة إتاحةً شاملةً عامة. ومع ذلك، يفتقر معظم الناس في البلدان ذات الدخل المنخفض والمتوسط ومناطق الصراع إلى الرعاية الملطِّفة. وما من بلدٍ في إقليم شرق المتوسط قد حقق دمج الرعاية الملطِّفة في نظام الرعاية الصحية فيه، بل إن أربعة بلدان فقط هي التي تقدم رعاية ملطِّفة أفضل من مجرد رعاية العزل.

الأهداف: هدفت هذه الدراسة الى الترويج لتحسين الرعاية الملطِّفة في إقليم شرق المتوسط، ووضع توجُّه وقواعد إرشادية لها، في ضوء دراسات حالة تَعرِض النجاحات والتحديات التي تجابه تنفيذ الرعاية الـمُلطِّفة في أربعة بلدان في الإقليم.

طرق البحث: وضعنا صيغة منظمة وموجزة لصوغ دراسات الحالة، ودَعَوْنا قادة الرعاية الملطِّفة في إقليم شرق المتوسط لاستخدام تلك الصيغة لوصف حالات النجاح في تنفيذ الرعاية الملطِّفة في بلدانهم والتحديات التي تُجابهها.

النتائج: بالإضافة للعديد من التحديات والاحتياجات، يضم إقليم شرق المتوسط أمثلة على النجاح في وضع سياسات الرعاية الملطِّفة، وتوفير الخدمات المجتمعية، وتنفيذ الرعاية الملطِّفة للأطفال.

الاستنتاجات: إن خبرات رواد الرعاية الملطِّفة بالإقليم، الموثقة في هذه الورقة البحثية، يمكن أن تساعد في توجيه تطوير الرعاية التلطيفية الإقليمية في منطقة الشرق الأوسط ومناطق أخرى.

References

1. World Health Assembly Resolution 67.19: Strengthening of palliative care as a component of comprehensive care throughout the life course. Geneva: World Health Organization; 2014 (http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R19-en.pdf, accessed 15 August 2021).

2. Declaration of Astana. Geneva: World Health Organization; 2018. (https://www.who.int/docs/defaultsource/primaryhealth/declaration/gcphc-declaration.pdf, accessed 15 August 2021).

3. Why is palliative care and essential function of primary health care? Geneva: World Health Organization; 2018 (https://www.who.int/docs/default-source/primary-health-care-conference/palliative.pdf, accessed 15 August 2021).

4. Krakauer EL. Just palliative care: responding responsibly to the suffering of the poor. J Pain Symptom Manage. 2008 Nov;36(5):505–12. https://doi.org/10.1016/j.jpainsymman.2007.11.015 PMID:18971074

5. Krakauer EL, Kwete X, Verguet S, Arreola-Ornelas H, Bhadelia A, Mendez O, et al. Palliative care and pain control. In: Jamison DT, Gelband H, Horton S, et al. (editors). Disease control priorities, 3rd edition. Volume 9: improving health and reducing poverty. Washington DC: World Bank; 2018:235–46 (https://openknowledge.worldbank.org/bitstream/handle/10986/28877/9781464805271.pdf?sequence=2&isAllowed=y, accessed 16 August 2021).

6. Integrating palliative care and symptom relief into primary health care: a WHO guide for planners, implementers and managers. Geneva: World Health Organization; 2018 (https://apps.who.int/iris/handle/10665/274559, accessed 15 August 2021).

7. Connor SR, editor. Global atlas of palliative care (2nd edition). London: Worldwide Hospice Palliative Care Alliance, and Geneva: World Health Organization; 2020 (https://www.thewhpca.org/resources/global-atlas-on-end-of-life-care, accessed 15 August 2021).

8. Knaul FM, Farmer PE, Krakauer EL, De Lima L, Bhadelia A, Kwete XJ, et al. Alleviating the access abyss in palliative care and pain relief: an imperative of universal health coverage. Lancet. 2018 Apr 7;391(10128):1391–454. https://doi.org/10.1016/S0140-6736(17)32513-8 PMID:29032993

9. Planning and implementing palliative care services: a guide for programme managers. Geneva: World Health Organization; 2016 (http://apps.who.int/iris/bitstream/10665/250584/1/9789241565417-eng.pdf, accessed 16 August 2021).

10. Fadhil I, Lyons G, Payne S. Barriers to, and opportunities for palliative care development in the Eastern Mediterranean Region. Lancet Oncol. 2017 Mar;18(3):e176–84. https://doi.org/10.1016/S1470-2045(17)30101-8 PMID:28271872

11. Atlas of palliative care in the Eastern Mediterranean Region 2021. Cairo: WHO Regional Office for the Eastern Mediterranean; 2021.

12. Dakessian Sailan S, Salifu Y, Saad R, Preston N. Dignity of patients with palliative needs in the Middle East: an integrative review. BMC Palliat Care. 2021 Jul 16;20(1):112. https://doi.org/10.1186/s12904-021-00791-6. PMID:34271909

13. Krakauer EL, Kwete X, Kane K, Afshan G, Bazzett-Matabele L, Bien-Aimé DR, et al. Cervical cancer-associated suffering: Estimating the palliative care needs of a highly vulnerable population. JCO Global Oncol. 2021;7:862–72. https://doi.org/10.1200/GO.21.00025

14. Rosenberg JD, Wachter KJ, Campbell AC, Rhatigan JJ, Weintraub RL. Addressing complexities in global health and inequities in global health education. Am J Public Health. 2015 Aug;105(8):e1. https://doi.org/10.2105/AJPH.2015.302759 PMID:26066944

15. Abu-Odah H, Molasssiotis A, Liu J. Challenges on the provision of palliative care for patients with cancer in low- and middle-income countries: a systematic review of reviews. BMC Palliat Care. 2020;19:55. https://doi.org/10.1186/s12904-020-00558-5

16. Boufkhed S, Harding R, Kutluk T, Husseini A, Pourghazian N, Shamieh O. What is the preparedness and capacity of palliative care services in Middle-Eastern and North African countries to respond to COVID-19? A rapid survey. J Pain Symptom Manage. 2021 Feb;61(2):e13–e50. https://doi.org/10.1016/j.jpainsymman.2020.10.025 PMID:33227380

17. Al-Saleh K, Al-Awadi A, Soliman NA, Mostafa S, Mostafa M, Mostafa W, et al. Timing and outcome of referral to the first stand-alone palliative care center in the Eastern Mediterranean Region, the Palliative Care Center of Kuwait. Am J Hosp Palliat Care. 2017 May;34(4):325–9. https://doi.org/10.1177/1049909115625959 PMID:26764363

18. Shamieh O, Richardson K, MD, Abdel-Razeq H, Mansour A, Payne S. Gaining palliative medicine subspecialty recognition and fellowship accreditation in Jordan. J Pain Symptom Manage 2020 Nov;60(5):1003–11. https://doi.org/10.1016/j.jpainsymman.2020.05.016 PMID:32442479

19. Alshammary S. Development of palliative care: the current situation in Saudi Arabia. Nov Appro in Can Study. 2021;6(3). https://doi.org/10.31031/NACS.2021.06.000640

20. Mosoiu D, Ryan KM, Joranson DE, Garthwaite JP. Reform of drug control policy for palliative care in Romania. Lancet. 2006 Jun 24;367(9548):2110–7. https://doi.org/10.1016/S0140-6736(06)68482-1 PMID:16798394

21. Joranson DE, Ryan KM. Ensuring opioid availability: methods and resources. J Pain Symptom Manage. 2007 May;33(5):527–32. https://doi.org/10.1016/j.jpainsymman.2007.02.013 PMID:17482042

22. Rajagopal MR, Joranson DE. India: opioid availability – an update. J Pain Symptom Manage. 2007 May;33(5):615–22. https://doi.org/10.1016/j.jpainsymman.2007.02.028 PMID:17482057

23. O’Brien M, Mwangi-Powell F, Adewole IF, Soyannwo O, Amandua J, Ogaja E, et al. Improving access to analgesic drugs for patients with cancer in sub-Saharan Africa. Lancet Oncol. 2013 Apr;14(4):176–82. https://doi.org/10.1016/S1470-2045(12)70343-1 PMID:23561749

24. Paudel BD, Ryan KM, Brown MS, Krakauer EL, Rajagopal MR, Maurer MA, et al. Opioid availability and palliative care in Nepal: influence of an international pain policy fellowship. J Pain Symptom Manage. 2015 Jan;49(1):110–6. https://doi.org/10.1016/j.jpainsymman.2014.02.011 PMID:24768596

25. Krakauer EL, Cham NTP, Husain SA, Hai Yen NT, Joranson DE, Khue LN, et al. Toward safe accessibility of opioid pain medicines in Vietnam and other developing countries: a balanced policy method. J Pain Symptom Manage. 2015 May;49(5):916–21. https://doi.org/10.1016/j.jpainsymman.2014.10.012 PMID:25523889

26. Krakauer EL, Thinh DHQ, Khanh QT, Huyen HTM, Tuan DT, The THN, et al. Palliative care in Vietnam: long-term partnerships yield increasing access. J Pain Symptom Manage. 2018 Feb;55(2S):S92–5. https://doi.org/10.1016/j.jpainsymman.2017.03.038 PMID:28803076

27. Stoltenberg M, Spence D, Daubman BR, Greaves N, Edwards R, Bromfield B, et al. The central role of provider training in implementing resource-stratified guidelines for palliative care in low-income and middle-income countries: Lessons from the Jamaica Cancer Care and Research Institute in the Caribbean and Universidad Católica in Latin America. Cancer. 2020 May 15;126 Suppl 10:2448–57. https://doi.org/10.1002/cncr.32857 PMID:32348569

28. Rajagopal MR, Palat G. Kerala, India: status of cancer pain relief and palliative care. J Pain Symptom Manage. 2002 Aug;24(6):191–3. https://doi.org/10.1016/0885-3924(93)90070-c PMID:7525768

29. Murray SA, Osman H. Primary palliative care: the potential of primary care physicians as providers of palliative care in the community in the Eastern Mediterranean Region. East Mediterr Health J. 2012 Feb;18(2):178–83. https://doi.org/10.26719/2012.18.2.178 PMID:22571096

30. Phillips JL, Heneka N, Bhattarai P, Fraser C, Shaw T. Effectiveness of the spaced education pedagogy for clinicians’ continuing professional development: a systematic review. Med Educ. 2019 Sep:53(9):886–902. https://doi.org/10.1111/medu.13895 PMID:31144348