Ethics and Palliative Care in Humanitarian Action: Study Findings and Next Steps

1. Aid when there is ‘nothing left to offer’: A study of ethics and palliative care in international humanitarian action Sept 27, 2018

2. GOALS for this morning • Deepen our analysis of data within the study’s case studies (including by gleaning insights from other parts of the project that could help enrich analysis); & • Begin cross-case analysis and establish plans for its continuation

3. SCHEDULE for this morning 9h Welcome, introductions, overview 9h30 “Key message” session: • “what are the biggest insights from this piece of the project regarding PC and humanitarian action?” 10h30 Break 10h45 Discussion in groups of 3-4  • Any ‘aha moments’ from the presentations? • What commonalities and patterns cut across data sources? • What differences stand out? 11h05 Brainstorm on moving forward with meta-analysis (large group discussion) of the full corpus of material • What are we learning / can we learn by looking across the data sources? 11h45 Plan next steps for data analysis with concrete action items: • Where do we go from here?

4. Study objectives: • To develop evidence clarifying ethical and practical possibilities, challenges, and consequences of humanitarian organizations addressing or failing to address patients’ and families’ palliative needs during public health emergencies • To inform realistic, context-sensitive guidance, education, and practices for the provision of palliative care during public health emergencies • To develop a baseline of current palliative care provisions for clinical and psychosocial care in humanitarian action against which progress can be measured

5. JORDAN: refugee camp RWANDA: long-term refugee camp 12 Humanitarian health workers Critical interpretive synthesis International survey International interviews In-depth case studies 12 humanitarian policy-makers GUINÉE: Ebola treatment centre Natural disaster

6. Key messages (5 slides/ 5 minutes): • “What are the biggest insights from this component of the project regarding PC and humanitarian action?”

7. JORDAN: refugee camp RWANDA: long-term refugee camp 12 Humanitarian health workers Critical interpretive synthesis International survey International interviews In-depth case studies 12 humanitarian policy-makers GUINÉE: Ebola treatment centre Natural disaster ELYSÉE ELYSÉE

9. Methodology • Initial HHE dialogue to establish need with PalCHASE members (Palliative care in humanitarian aid and emergencies network) • September 2005 to June 30, 2017 • OVID, Embase, PsychInfo, Web of Science, CINAHL, ReliefWeb, IGO 14,434 records 95 sources

10. famine

11. Reuters/Gleb Garanich 2017

12. Literature confirms anecdotal accounts • Lack of guidelines and training • Lived as sub-optimal • Involves improvisation and adaptation

13. Figure 1 in Roddy et al. 2012 Clinical Manifestations and Case Management of Ebola Haemorrhagic Fever Caused by a Newly Identified Virus Strain, Bundibugyo, Uganda, 2007–2008. PLOS One.

14. Are recommendations actionable? • Basic EOL care training for all • Earmarking resources for pallcare • Culturally sensitive care

15. JORDAN: refugee camp RWANDA: long-term refugee camp 12 Humanitarian health workers Critical interpretive synthesis International survey International interviews In-depth case studies 12 humanitarian policy-makers GUINÉE: Ebola treatment centre Natural disaster LISA

16. Experience Level & Geographical Distribution of Survey Participants (n=45) Is there a need for palliative care in humanitarian emergencies?

17. Current state or preparedness to provide palliative care in humanitarian emergencies: • 58% of respondents do not typically see palliative care patients • 56% of respondents felt competent in providing palliative care • 67% of respondents felt capable of providing guidance to others • 73% did not feel that their training was adequate • 82% felt that there was a need for more training Current state of resources

18. A voice from the field… “I have been scarred by sending many many babies home to die. I similarly feel that I have been forced to torture babies who were going to die by prolonging their lives with IV fluids.”

19. “The lack of palliative care in the field is… [a] dirty little secret” “It is desperately needed. Many of our patients are palliative” “For all the research done in health care and disease, we neglect to remember that there is one thing that will affect everyone, death” “Being able to provide palliative care in any of our settings is necessary” “There are no guidelines within our organization for providing [palliative care”

20. What can we do better? Organizational Needs Global Needs

21. JORDAN: refugee camp RWANDA: long-term refugee camp 12 Humanitarian health workers Critical interpretive synthesis International survey KEVIN & CARRIE 12 humanitarian policy-makers GUINÉE: Ebola treatment centre Natural disaster

22. “Critical Needs” Vinsan Saito 2010

23. Ronald Searle 1943 What are the moral experiences of humanitarian health professionals as they respond to the needs of individuals who likely to die during a humanitarian crisis?

24. Duty Dignity Systemic Constraints Balancing priorities Profound Weight of responsibility

25. http://www.t5eiitm.org/2015/11/once-upon-a-summer-volunteering-in-palliative-care/http://www.t5eiitm.org/2015/11/once-upon-a-summer-volunteering-in-palliative-care/

28. JORDAN: refugee camp RWANDA: long-term refugee camp 12 Humanitarian health workers Critical interpretive synthesis International survey ELYSÉE (& SÉKOU) 12 humanitarian policy-makers GUINÉE: Ebola treatment centre Natural disaster

29. Guinea case study • Uniqueness of death, dying, and care in EVD • Role of family & non healthcare professional • Importance of witnessing • Good pallcare is “just” good care • Dying in honor

30. Guinea case study • Uniqueness of death, dying, and care in EVD • Role of family & non healthcare professional • Importance of witnessing • Good pallcare is “just” good care • Dying in honor

31. John Moore/Getty Images 2014

32. Exceptionality of palliative care in ETC • Limited patient healthcare provider contact • Limited knowledge of disease and diagnostics • Proximity of the dead • Trauma: sounds and sights of suffering and dying

33. +++ • Generalized loss, anxiety, depression • No traditional post-mortem rituals • Isolation • Patients stressed and sometimes angry due to limited HCP presence

34. What matters most? • Dying in honor Not dying alone; care from the heart, respectful treatment of the body, opportunity to share secrets • Psychosocial support • Economic support to bereaved

35. JORDAN: refugee camp RWANDA: long-term refugee camp 12 Humanitarian health workers Critical interpretive synthesis International survey OLIVE & IBRAHIM 12 humanitarian policy-makers GUINÉE: Ebola treatment centre Natural disaster

36. Jordan Case Study overview • Participants interviewed: • Refugees living in Za’atari Camp (6) • Refugees living in nearby communities (3) • Jordanian citizens living in Amman (6) • Service Providers (3 NGOs & 2 HCPs) National & International • Recruitment and data collection May 2017 – August 2017 Olive Wahoush & Ibraheem Abu Siam September 26-27 2018

37. Olive Wahoush & Ibraheem Abu Siam September 26-27 2018

38. Provider perspectives • Physician centred and profit driven system • Need for education and raising awareness about PC for social /cultural change • Need for work on the national level • To define concepts & set standards for PC • financial and human resources • Logistic issues in opioid availability • Humanitarian relief focus on other priorities & influence of donor interests • Refugee movements are limited and preapprovals required Olive Wahoush & Ibraheem Abu Siam September 26-27 2018

39. Refugee Perspectives • No-one knew of or had experience of palliative care • When explained - all viewed palliative care as desirable/helpful but needing public education • Wanted mental health & social supports for family • Economics, geography, stigma, gender roles and perceptions of social death/isolation important • Waiting, preapprovals, waiting, tests, waiting and delays or no treatment with little, inconsistent or no pain relief available • No access to King Hussein Cancer Centre Olive Wahoush & Ibraheem Abu Siam September 26-27 2018

40. Al Za’atari Camp - Amman 67 kms – Irbid 41 kms - Mafraq 14 kms Olive Wahoush & Ibraheem Abu Siam September 26-27 2018

41. Jordanian Participant Perspectives • None knew of or had experience of palliative care • When explained - all viewed palliative care as desirable/helpful but needing public education • Care is focused on medical care little or no psychosocial supports • Social support provided by the extended family, the lack of palliative psychosocial care services; and the need for holistic care to meet medical and non-medical needs were all emphasized. • Access to King Hussein Cancer center • Unsatisfactory care and profit driven system • Pain management gaps: prescribed drugs are not available on a continuous basis Olive Wahoush & Ibraheem Abu Siam September 26-27 2018

42. JORDAN: refugee camp RWANDA: long-term refugee camp 12 Humanitarian health workers Critical interpretive synthesis International survey SONYA & EMMANUEL 12 humanitarian policy-makers GUINÉE: Ebola treatment centre Natural disaster

43. 32 years of age Mother of 4 elementary school aged children Widow, husband died in 2015 conflicts in Burundi Breast cancer diagnosis in February 2017 Surgery in October 2017 Was denied her 6-month follow-up appointment because her transit paperwork was no longer valid (despite the appointment). In them meantime, new mass growing since February 2018. Wants to see her children are being cared for “while I’m still alive”.

44. Case Study: • Protracted conflict; • Comparison between two camps: oldest camp, Gihembe (1997); newest camp, Mahama (2015); • Compared to Jordan: lower SES, lower health literacy, less access to comprehensive care; • National palliative care strategy since 2011. Protracted Conflict/Refugee Setting, Rwanda

46. Preliminary findings: Reduce stigma: Public education on cancer, life-threatening conditions, terminal illness Constant pain, to the point of not sleeping at night. Contact / reconnect with family members back home. Dedicated – direct care: bypassing the triage stations in the camp health centres Restricted access to opioids: Told they are too addictive. Childcare: during healthcare visits, especially at night. Holistic, interdisciplinary care: palliative care integrated in the different health disciplines represented in the camp health centre. Could cope if they had electricity: for a fan, or a light in the middle of the night. Orphan care: want to know children will be taken care of while still alive. To not be treated like already dead: by hcp, by family, by community (privacy, safety). Distances to travel: same for local nationals as well. Bureaucracy: increased for refugees. Delays care

47. “Accompagnement” • At the bedside • Good Samaritans • Just talking, sitting beside. • Advocacy • Soliciting donor interventions for particular therapies, treatments, or even access to good & services (e.g, small things). THANK YOU to those who participated, particularly those who were ill; to our supporters in Rwanda, Canada, Switzerland, and beyond; to our funders (ELRHA-R2HC) and to you for providing reflections and feedback. www.humanitarianhealthethics.net

48. Natural Disaster Array Haiti- 2010 earthquake: “There was that young girl who had both arms broken, chest crushed, and she wasn’t going to make it. She was already in respiratory distress…As I was passing by, she looked at me, I looked at her and she said, would you cover me? I don’t want the flies to eat me alive. And I did. That was very hard…And I walked back and I covered her and talked to her a bit, and I move on, to go and look after those who we hoped to save.” [PALL_ND_07]

49. Participant Demographics 17

50. 2010 Earthquake Haiti 2016 Earthquake: Ecuador Seasonal Famine: Chad 2013 Typhoon Haiyan Philippines Tropical Cyclone: Solomon Islands 2015 Earthquake Nepal 2004 Tsunami: India & Sri Lanka Flooding Pakistan