“There is no time for these patients”: Ethics, obstacles ......• Refugees' experiences...
Transcript of “There is no time for these patients”: Ethics, obstacles ......• Refugees' experiences...
“There is no time for these patients”: Ethics, obstacles and palliative care in humanitarian settings
Lisa Schwartz, PhD1; Olive Wahoush RN, PhD1; Wejdan Kahter PhD6; Malek Alnajar7; Rachel Yantzi RN, MPH1; Ibraheem Abu Siam, RN, CNS; Assoc. Public Health Officer8; Ani Chénier, MA2; Kevin Bezanson, MD, MPH3; Elysée Nouvet, PhD4; Carrie Bernard MD5;
Gautham Krishnaraj1; Sonya de Laat, PhD1; Lynda Redwood Campbell MD1; Laurie Elit MD1; Matthew Hunt, PT, PhD2
1McMaster University, Hamilton, ON, Canada; 2McGill University, Montreal, QC, Canada; 3Thunder Bay Regional Health Sciences, Thunder Bay, ON, Canada; 4Western University, London, ON, Canada; 5University of Toronto, Toronto, ON, Canada; Jordan University of Science & Technology, Irbid,
Jordan6; University of Jordan, Amman, Jordan7; UNHCR, Jordan8.
Acknowledgements: We wish to thank the participants who helped bring this study to life. Thanks to collaborators and research assistants, and those who saw the importance of this study enough to help us. Special thanks to UNHCR; The School of Nursing at the Jordan University of Science and Technology; and to the people at elrha’s r2hc program for funding and support.
References: 1. Al Qadire, M., Omran, S., & Tayyem, M. (2014). Palliative Care in Jordan: Accomplishments and Challenges. In M. Silbermann, Palliative Care to the Cancer Patient: The Middle East as a Model for Emerging Countries (pp. 111-124). New York: Nova Science Publishers.
2. Arnaout, M. (2016). Caring for Children with Cancer in a Country Conflicted with Massive Refugee Migration: Jordan as an Example. In M. Silbermann, Cancer Care in Countries & Societies in Transition (pp. 104-116). Springer.
3. Isabel Pinheiro & Dilshad Jaff (2018) The role of palliative care in addressing the health needs of Syrian refugees in Jordan, Medicine, Conflict and Survival, 34:1, 19-38, DOI: 10.1080/13623699.2018.1437966
4. Marston J, De Lima L, Powell RA. 2015. Palliative care in complex humanitarian crisis. The Lancet 386:1940.
5. MacDonald M & Nouvet E (2017) Palliative Health Care in Jordan for Syrian Refugees. A Humanitarian Health Ethics Report. https://humanitarianhealthethics.net/home/research/hhe-research-studies/pall-iphc/case-study-conflict-acute-refugees-jordan/
6. Powell R, Schwartz L, Nouvet E, Sutton B, Petrova M, Marston J. 2017. Palliative care in humanitarian crises: always something to offer. The Lancet 89:1498-9.
7. Smith, J and Aloudat, T. 2017. Palliative Care in Humanitarian Medicine. Palliative Medicine 31(2): 99–101
What could help?§ Access to basic necessities(clean water, nutritious food)
§ Timely access to health services§ Childcare
§ Reduced administrative barriers to accessing care & follow up
§ Support for ADLs§ Contact with family to say their goodbyes
Who they depend on§ Family members e.g. a
son trained as a nurse (P6)
§ Neighbours, strangers sometimes
§ Healthcare providers, when accessible
Challenges
§ Sometimes labyrinthian system to access care
§ Long waits and delays
§ Geographically remote
Provider PerspectivesHealthcare providers felt
palliative care was important yet they
lacked the resources to implement, i.e. pain
meds, treatments
Comparisons to HomeParticipants from
middle income countries were
accustomed to access to healthcare and
specialist care
Expressions of Gratitude
§ Heartfelt
§ Frequent
§ Balanced with frustration
“I can’t afford to pay for my medicine, then
they asked me to come next day for treatment
... it’s a long complicated procedure
and routine which needs a lot of
paperwork” (P5)
“at [the] hospital they said that I should get money
from [org.] to be able to get the [catheter] bags enough for a month regularly, but I am still waiting for [org.] to do something, and that day
I get very frustrated from their long waiting times
and delays. I regret that I shouted at them.” (P6)
“they stopped providing me with
food coupons because I couldn’t
go for required verifications” (P3)
“We are, thanks God, act as one family with Jordanian
people, we came to our family here in Jordan, I am comfortable here, my son also is comfortable here in
Jordan, … they treat us very well.” (P6)
“I have to take extra precautions, such as not to be
exposed to severe weather conditions either severe cold
or hot weather. Now I am suffering here from hot
weather. Sun is harmful for me. There is no electricity
before 8 o’clock and I can’t use the fan all day.” (P5)
“Food, water, and clothing
that’s what, all what I need.”
(P3)
“the interest to provide such kind of a treatments or
services, it’s not optimal because normally they focus
on the life-saving, basic intervention, but not to such
kind of services like rehabilitation, palliative care,
these kind of things, they don’t - especially during the
emergencies.” (IntPro1)
Project: Aid when there is "nothing left to offer": A study of ethics & palliative care during international humanitarian actionAims: The overall study aims to clarify how humanitarian organizations and healthcare providers caring for people affected by a humanitarian crisis might best support ethically and contextually appropriate palliative care. Context:• Here we present results from 1 of 4 case studies, this one focusing on
refugees in Jordan• Participants living with MS, colorectal cancer, breast cancer, lung fibrosis. • Refugees' experiences navigating different mandates of over 280 NGOs
providing various forms of support.
Qualitative Methods: Four case studies based on in-depth semi-structured interviews: public health emergency (Guinea, Ebola), natural disasters, acute conflict (Jordan, refugees) and protracted conflict (Rwanda, refugees). Guided by interpretive description methodology, this inquiry was undertaken within a constructivist paradigm in which human experience is understood as subjective, local, socially and experientially based, and as culturally and historically specific.
Discussion: 1. Comparison of patient and provider perspectives tells a moving story. Where providers are focused on barriers to treatment, these things are significant for patients but overshadowed by simpler, more immediate needs such as access to basic necessities. 2. Silence around death/dying was noted, only one participant clearly indicated he understood he was dying. 3. palliative care is acknowledged as important by international aid actors and basic palliative care training is provided to UNHCR medical staff, but palliative care considered outside main remit until broader donor community expresses interest.
Recommendations: Donors and agency leaders need to consider how to address the need for palliative care during emergencies. While pain management and treatment are significant, they should be considered an aspect of broader needs.
"we don’t prefer to provide services to the refugees at the
level higher than what the normal or the local
government is providing the national because this is create a social tension between the host communities” (IntPro1)
“what I am afraid of is that
my situation will become worse
due to long delays” (P6)
"they asked me to go to [name] organization to
ask for help. They tried to help me, but not enough. A lady there tried to help me, she is very nice, but
what can she do? ... They didn’t secure my
medicine, although they are trying their best to
help." (P5)
May 10,2018