“There is no time for these patients”: Ethics, obstacles ......• Refugees' experiences...

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“There is no time for these patients”: Ethics, obstacles and palliative care in humanitarian settings Lisa Schwartz, PhD 1 ; Olive Wahoush RN, PhD 1 ; Wejdan Kahter PhD 6 ; Malek Alnajar 7 ; Rachel Yantzi RN, MPH 1 ; Ibraheem Abu Siam, RN, CNS; Assoc. Public Health Officer 8 ; Ani Chénier, MA 2 ; Kevin Bezanson, MD, MPH 3 ; Elysée Nouvet, PhD 4 ; Carrie Bernard MD 5 ; Gautham Krishnaraj 1 ; Sonya de Laat, PhD 1 ; Lynda Redwood Campbell MD 1 ; Laurie Elit MD 1 ; Matthew Hunt, PT, PhD 2 1 McMaster University, Hamilton, ON, Canada; 2 McGill University, Montreal, QC, Canada; 3 Thunder Bay Regional Health Sciences, Thunder Bay, ON, Canada; 4 Western University, London, ON, Canada; 5 University of Toronto, Toronto, ON, Canada; Jordan University of Science & Technology, Irbid, Jordan 6 ; University of Jordan, Amman, Jordan 7 ; UNHCR, Jordan 8 . 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 Perspectives Healthcare providers felt palliative care was important yet they lacked the resources to implement, i.e. pain meds, treatments Comparisons to Home Participants 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 action Aims: 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

Transcript of “There is no time for these patients”: Ethics, obstacles ......• Refugees' experiences...

Page 1: “There is no time for these patients”: Ethics, obstacles ......• Refugees' experiences navigating different mandates of over 280 NGOs providing various forms of support. Qualitative

“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