The burden of choice: a qualitative study of healthcare professionals’ reactions to ethical challenges in humanitarian crises
© The Author(s) 2017
Received: 21 October 2016
Accepted: 26 January 2017
Published: 8 February 2017
Healthcare professionals are a vital aspect of public health delivery in humanitarian crises. Both overt and subtle complexities in the decision making process during periods of instability may involve moral and ethical considerations. Few studies have examined the lived experiences of healthcare professionals encountering ethical challenges in the field. The aims of this qualitative study were to explore how healthcare professionals perceive complex ethical choices and to understand the impact these challenges had on them both personally and professionally. The data was analyzed using manifest and latent qualitative content analysis. Four themes emerged from the data analysis: ethics as a sense of right or wrong, adversely bearing the burden of choice, held hostage by institutional constraints, and the difficulty of preparing for ethical challenges. The overarching theme struggling to make the right choice established that ethical challenges created difficulties for healthcare professionals both in negative psychological outcomes and the perception of reduced patient care. Awareness of these ethical challenges can help organizations to fully support healthcare professionals in the field to reduce personal struggles and provide optimal care delivery.
KeywordsHumanitarian crises Ethical challenges Moral distress Healthcare professionals
Humanitarian crises (HCs) are dynamic catastrophes that can burden local systems to the point of collapse. In the current global context, HCs both manmade and natural are highlighted in the realm of international public concern. The healthcare aspect of the response to HCs is most effective when built on models of public health intervention, for example, a strong emphasis on disease prevention and health promotion (Brennan and Nandy 2001). For this reason, there is the direct and necessary involvement of public health delivery systems in times of HCs. International public health response in an HC is often provided by humanitarian organizations in all periods of an intervention: disaster relief, rebuilding, and development stages (Chung 2012). Humanitarian organizations send healthcare professionals (HCPs) to provide care in contexts where there are often disparities between what is needed and the care that HCPs in the field are able to provide.
Many factors innate to the environment in HCs affect the work, including scarcity of resources, security issues, overwork, inter-personal issues, lack of preparation, and perceived lack of appreciation from victims (Bjerneld et al. 2004). Many HCPs report depression, helplessness, anxiety, burnout, and further psychological distress and sleep disturbances upon returning home (e.g., Lopes Cardozo et al. 2012; Walsh 2009; Ager et al. 2012). HCPs recognize that one’s personal characteristics can influence field experiences, particularly in regards to decision making. Characteristics such as personality, mental stability, reasons for going on the mission, and ability to work as a team member may factor into the decisions that are made in the field (Bjerneld et al. 2004; Thoresen et al. 2009).
Recent years have brought an increasing discourse regarding the moral issues encountered in decision making in humanitarian crises. For a decision to be in the ethical dimension, it is not necessary that the resulting decision is consistent with ethical norms (Jones 1991). It simply means that the individual is presumed to recognize that there are moral considerations involved in the presented choices (Nilsson et al. 2011). The term “moral dilemma” is defined as a decision where any possible choice will conflict with an existing moral principle (Blackburn 1994). At times, tough or hellish choices can masquerade as moral dilemmas (Slim 1997). For the purpose of this article, the authors have operationalized the term “ethical challenges” to encompass situations faced when the HCPs perceived themselves to be confronted by decisions that called upon their ethical principles in a problematic manner. The term “dilemma” is used when referencing previous work that utilized this term.
Research in the study of ethical decisions specific to HCPs performing humanitarian work is an emerging and interdisciplinary field. Slim’s (1997) seminal paper acknowledged the demanding moral choices being faced by both humanitarian agencies and their staff and outlined guidelines for confronting these moral dilemmas. However, in the time since Slim’s paper was published almost two decades ago, there has been a scarcity of research that focuses specifically on the lived experience of HCPs who have grappled with decisions in the ethical realm while on an assignment (Nilsson et al. 2011). Topics that have been explored since include: the impact of fieldwork on the physical and mental health of relief workers (e.g., Bjerneld et al. 2004; Lopes Cardozo et al. 2012; Ager et al. 2012), the ethics of both humanitarian aid work and ethical issues encountered in the actual work (e.g. Hunt et al. 2011; Nilsson et al. 2011; Schwartz et al. 2010, 2012), and qualitative studies on HCPs’ individual experiences of stress in the field (Bjerneld et al. 2004). The present study aims to expand this underdeveloped stream of inquiry.
There are multiple international codes of ethics to guide HCPs in their work (i.e., Statement On Medical Ethics In The Event Of Disasters, World Medical Association 2006; United Nations Draft Declaration on Bioethics and Human Rights, UNESCO 2005; The Sphere Project Humanitarian Charter and Minimum Standards in Humanitarian Response 2010). However, there is no overarching system of rules to govern which set of guidelines to follow (Schwartz et al. 2012). There can be conflict between individual and institutional codes of ethics, which in turn intersects with clinical ethics and public health ethics. Tension between clinical and public health ethical ideologies is created because of the different focus of each of the following: individual good versus the focus on the greater good and social justice (Schwartz et al. 2012). The individual needs ingrained in clinical codes of ethics cannot necessarily exist harmoniously with the population-based principles of public health care. Navigating these choices has been identified as a source of confusion and challenge (Schwartz et al. 2012). Compounded by a lack of resources in the field, these decisions can turn into dilemmas where there is no clear “right” choice (Jameton 1984).
HCPs encounter situations demanding immediate decisions, yet have very little training, standardized guidance, or ethical support structures. Four main sources of ethical dilemmas in the field were reported by Schwartz et al. (2010): (i) allocating scarce resources, (ii) navigating existing socio-political landscapes, (iii) the policies and agendas of aid organizations, and (iv) the norms surrounding fieldworkers’ roles and interactions. Other sources of dilemmas include difficulties in adhering to cultural contexts, acknowledging imbalances of power, encountering organizational barriers to provision of care, lack of regulatory standards, and individual differences in understanding of health and illness (Hunt 2008, 2011; Nilsson et al. 2011). HCPs have identified that the burden of responsibility that accompanies these decisions to be highly stressful (Schwartz et al. 2010). The effect on individuals who must make ethical decisions in uncertain environments can be both personal and professional. These challenges can be a cause of self-reflection, questioning of personal identity, and alteration of self-identification as a moral person (Hunt et al. 2011). This issue extends to professional identity when HCPs must perform actions that do not necessarily lie within the boundaries of their usual professional duties or are prevented from delivering care as they would do in their home context (Hunt 2008). The outcome of all of these different pressure points can be distress, anxiety, uncertainty, and remorse (Hunt et al. 2011; Nilsson et al. 2011).
The negative psychological outcomes from ethical dilemmas are one category that can be the cause of “moral distress”. This term is defined as the painful psychological dissonance that happens when one is forced by external institutional constraints to carry out actions that are not in accordance with one’s internal moral compass (Jameton 1984). This definition was extended by Kälvemark et al. (2004) to include external constraints beyond those at the organizational level. Most previous research in this area has investigated moral distress in the context of nurses (Kälvemark et al. 2004). The study of moral distress in humanitarian HCPs is a relatively new field.
Another model related to ethical dilemmas is Raines’ (2000) “ethics stress model” which explains the association between moral analysis, individual coping mechanisms, and the level of stress perceived when one must make ethical decisions. The model is an extension of Jameton’s (1984) three stages of ethical decision making: moral uncertainty, moral dilemma, and moral distress. Paired together, the ethics stress model and moral distress theories can shed some light on the negative stress symptoms associated with ethical challenges in HCs. Both models build on the presupposition that HCPs endeavor to act in an ethically responsible manner in their professional lives (Kälvemark et al. 2004). Being constrained by external limitations that prevent an HCP from working in a manner they deem personally ethical has been shown to manifest in frustration, anger, anxiety, guilt, remorse, and fear (Kälvemark et al. 2004; Radzvin 2011). These symptoms contribute to headaches, feelings of worthlessness, burnout, and a feeling of loss of moral identity (Radzvin 2011). As a result, HCPs may feel unable to provide care using best practices.
Few studies have explored the experiences of HCPs with regard to how they perceive ethical challenges encountered in the field and how they are influenced by these conflicts. The overall objective of this study was to gain a deeper understanding of the experiences of humanitarian HCPs’ encounters with ethical challenges during the course of their field engagement. The specific aims were (i) to explore how HCPs perceive ethical challenges and (ii) to explore the effect these challenges had on them both personally and professionally.
A qualitative research design used data from eight in-depth interviews with HCPs who had participated in fieldwork during any stage of an HC. A semi-structured interview format allowed the participant to describe their lived world (Kvale and Brinkmann 2009).
Participant selection began purposively with the distribution of an information sheet through contacts at several humanitarian aid organizations. Snowball sampling was used to recruit additional participants. The sampling strategy aimed to maximize diversity of experiences, through breadth of public health roles, variety of organizations included in the sample, and participation in different types and stages of HCs. The data was collected as part of a master’s thesis project, and time constraints meant that sampling was restricted to eight participants. Furthermore, the authors noticed a repetition of themes beginning with the seventh interview. However, this possible limitation is further addressed in the “Methodological considerations” section. The criterion for inclusion was previous or ongoing participation in an HC in the capacity of service delivery as a HCP. The participants worked with a number of different organizations, ranging in size from regional NGOs to international humanitarian institutions. Collectively, they had worked with 15 different organizations in a diverse range of public health roles as nurses, medical doctors, heads of mission, area safety officers, and anesthesiologists. Many of the participants had responsibilities in both management and patient care. The HCs were times of war, natural disaster, epidemics, and political turbulence in geographic areas spread across Africa, the Middle East and the Caribbean. The missions were mainly in the disaster relief and rebuilding stages, and one participant had also worked in the development stage. The participants ranged in age from 28 to 69, with careers in humanitarian action spanning between 2 and 20 years. Each individual had completed their most recent mission within the last 2 years. All interactions with participants were conducted in rigorous accordance with ethical guidelines governing research on human subjects, i.e., informed voluntary consent, anonymity, and confidentiality. The regional ethics review board required no formal ethical permission, as the project was a master’s thesis project and complied with institutional ethical requirements.
An interview guide was created solely for this study. The questions were open ended with individually adapted follow-up probing questions. Introductory questions asked for basic personal data, including age, educational level, current occupation, and the nature of their work in HCs. Participants were then asked to reflect on their conception of ethics, the times they had experienced ethical challenges and their reactions, and their thoughts on their preparation for situations of this nature.
The principal researcher carried out every interview in English. One face-to-face interview was conducted in Malmö, Sweden, and seven were conducted via Skype due to the geographical locations of the participants. Each conversation was recorded, and field notes were taken to supplement the recordings. The interviews lasted between 38 and 58 min, and no reimbursement was offered for participation.
Example of the coding process
I think, first of, there is the huge amount of sadness, to, to, know that you are there, and you have quite good financial possibilities behind you of trying to help the people that are there, and your hands are tied from doing anything but sending a person back to, this bad situation they are in.
Condensed meaning unit:
There is a huge amount of sadness, to know you are there with good financial possibilities and your hands are tied from doing anything but sending a person back to a bad situation.
1: Feeling deep sadness
2: Feeling forcibly restrained
3: Being prevented from the right action
1: Experiencing emotional suffering
2: Struggling against orders
3: Experiencing emotional suffering
Results from the data analysis displaying the organization of the overarching theme, themes, categories, and subcategories
Categories and subcategories
Struggling to make the right choice
1. Ethics as a sense of right or wrong
Experiencing various ethical challengesa
Challenges between self and organizationb
Challenges within selfb
Challenges between self and cultureb
Wanting to do the right thinga
Recognizing unethical motivationsa
2. Adversely bearing the burden of choice
Experiencing emotional sufferinga
Powerlessness and instability
Anger and frustration
Being isolated and abandoned
Negative impacts on care deliverya
Not wanting to continue worka
Needing coping mechanismsa
Needing to be tough
3. Held hostage by institutional constraints
Being silenced by the organizationa
Organization feigning ignorancea
Bureaucracy as an alibia
Struggling against ordersa
4. The difficulty of preparing for ethical challenges
Lacking formal ethical guidelinesa
Questioning how to train for challengesa
Looking for guidance from the teama
Experience making it easiera
Positive organizational supporta
Theme # 1: Ethics as a sense of right or wrong
When you are a doctor in the field you try as best as you can to follow the programmatic choices but when it comes into conflict with your own values, well—you disregard them…the fighting always creates residual resentments, or grudges, or destroys the team dynamics, so that is not an easy decision to oppose the programmatic decisions of your organization. (P4)
Then you just kind of have to find out the way that is the best in that situation, it can be wrong if you look at it from your background, but in that situation it is probably the best that you can do. (P2)
It is about the other person, and you know, treating your peers as you would like to be treated yourself. I think that this is something that probably has a common ground with any culture or religion where there is a common ground of humanity. (P7)
Theme # 2: Adversely bearing the burden of choice
Sleeping difficulties I guess. And that is something that I never get, unless in very severe situations. Sleeping difficulties, eating difficulties. Like, we spent days without eating because you just can’t even swallow your own saliva. It’s just, you can’t even breathe normally. (P8)
And it made me angry and it made me feel actually more isolated and alienated, in general. (P1)
So it is the same type of emotion, just from a different aspect of frustration, of helplessness of trying to get other people to work, trying to find somebody who can to help you in the situation but it was both like a moral dilemma and a lot of sadness. (P6)
This very easy and cheap intervention was denied because the mere fact to conduct this intervention would make it clear to the public and to the authorities that something was wrong in detention… I would say anger, tiredness, and I ended up the terms of my mission that I didn’t want to come back. (P4)
To deal with the psychological burden of ethical challenges, numerous participants coped by shutting off emotionally or by putting up barriers between themselves and the patients with whom they felt guilt towards. However, it is important to note that the participants showed courage and strength in facing these tough situations. They identified that they needed to be tough and fight to find emotional stability from within. The motivation to find the toughness within seemed, in part, to come from the drive to deliver the best healthcare possible in accordance with their professional duties, but also from their personal sense of right and wrong.
Theme # 3: Held hostage by institutional constraints
From the [organization’s] side…people agreed it was the right diagnosis, but there was nothing they could do to help me do the right public health action. And, one typical answer that I got, I will always remember this, was “keep a low profile”. (P4)
So that’s my analysis, that it could be the consequence of lack of information or ignorance. Or sometimes it could be deliberate. We don’t want to know about that. We don’t want to know about the uncomfortable truth. (P4)
And it was just like a year of, basically, inaction from head office and they were burying their head in the sand and not dealing with it. […] So I have learned to make moral compromises, and I would like to think on the serious ones that I would not accept it, but, who knows. (P5)
Theme # 4: The difficulty of preparing for ethical challenges
Medically, there are guidelines and there are medical ethics where we are bounded to within the hospital. We have to do this and this and that, and those ethics are clear, and we are trained to use them and to apply them…I just think that there should be a set of guidelines within a catastrophe situation. And there is not. They are very vague and we are not trained about them. (P8)
I don’t think I was very well prepared…well I am not even sure you can go and have a course, of course you can be presented with potential situations or problems but I think once you are in the specific situation…then it is very difficult. (P6)
I think it is basically through talking with your peers and colleagues who have been through the same thing. Almost always with other […] colleagues who have been through the same thing. (P7)
Experience helps a lot. And of course, if you are interested in different cultures, and you want to read and you have a good contact with local people…you can understand better how they think and all this. So I think that comes with the experience. (P2)
I guess there would be other dilemmas where…we succeed and overcome those boundaries…Once again I am quite happy and quite lucky working within the [organization’s] structure because we have those kind of foundations upon which we are working. (P7)
The aims of this qualitative study were to explore how HCPs perceive ethical challenges and to understand the impact that these challenges had on them both personally and professionally. This study demonstrates that HCPs are affected by ethical challenges in emotionally stressful ways that can have an adverse impact on their ability to deliver care. The themes that emerged agree with and expand on earlier findings about the perceptions of ethical challenges in humanitarian aid work. It is important to recognize how HCPs conceive ethics in order to be able to fully understand their experience of ethical challenges. The findings revealed that ethics is a diffuse concept. Individuals identified a strong inner sense of right and wrong as opposed to an explicit definition of what ethics are. The participants indicated that this sense was not necessarily overtly taught but instead instilled in them throughout their lives and experiences. They used their personal values as a moral guide in times of decision making.
Previous research focused on understanding the nature of ethical dilemmas and the moral reasoning employed by HCPs (e.g., Schwartz et al. 2010). The current study identified similar findings, specifically challenges between oneself and the organization, oneself and the cultural context in the HC, and internally within oneself. All of these experiences shared a core of personal conflict. The struggle was a result of the individual’s conception of their ethics interacting with the complex institutional, cultural, and personal environments in HCs. Studies have shown that HCPs who have encountered ethical dilemmas experienced symptoms of anxiety, distress, uncertainty, and remorse (Hunt et al. 2011; Nilsson et al. 2011). The findings in this study are strikingly similar. Participants elaborated on a variety of emotional suffering. They recounted a range of feelings including helplessness, outrage, abandonment, and despair.
The study identifies that the negative feelings being reported are indicative of moral distress. Previously, Kälvemark et al. (2004) built on Jameton’s (1984) definition of moral distress to encompass the negative symptoms of psychological dissonance when one is forced by external restrictions to carry out actions that do not align with one’s internal moral compass. One study (Nilsson et al. 2011) discussed moral distress in humanitarian aid operations, but otherwise, this concept has previously been researched mainly in the field of nursing and healthcare professionals in formal workplaces (e.g., Kälvemark et al. 2004; Radzvin 2011). Moral distress, combined with Raines’ (2000) model of stress related to ethical decision making, can help explain the profound negative feelings expressed by the participants. Further research into the area of ethical challenges and the resulting moral distress in HCPs in HC environments could focus more extensively on the context of the variety of ethical issues being encountered (Kälvemark et al. 2004). This area of inquiry will be beneficial to understanding how HCPs can be more effectively supported in order to avoid negative reactions.
The current study brought to light new ideas about how ethical challenges can be linked to barriers to care. The problem of whether the HCP or their organization should bear the burden of responsibility in ethical dilemmas has previously been commented on (Schwartz et al. 2012). The participants in this study believed that the organizations sometimes prioritized political or institutional agendas over the individual patient. This resulted in the prevention of proper care delivery. This lack of support is a problem that affects the individual both personally and professionally. The negative psychological symptoms experienced in times of moral distress also negatively impacted service. HCPs who were not at their full psychological fitness felt impeded from acting to the fullest of their professional abilities. Participants also identified that after experiencing ethical challenges, they felt resistance to continuing on the mission or working again with their organization. Their experiences affect both optimal public healthcare delivery in HCs and the individual abilities of the HCPs as public health workers.
Previous research has discussed different frameworks and guidelines for approaching ethical dilemmas in the field (Hunt 2011; Hunt et al. 2011). The findings in this study are similar to previous research indicating that ethical challenges are complex situations and therefore institutional guidance is also a complex task. As ethics is an abstract concept, the benefits of including theoretically oriented preparation for ethical dilemmas prompted skepticism from the participants in Hunt et al. (2011). The individuals in this study expressed the same opinions. It was expressed that tools need to be developed are those relevant to the environment in HCs. Developing a comprehensive case-based preparatory package using research findings could help to make HCPs aware of the issues that exist, culturally, politically, and socially (Hunt et al. 2011). For instance, individuals could be made aware of the tension between individual clinical ethics and public health care ethics that exists in HCs (Schwartz et al. 2012). It was expressed previously (Hunt et al. 2011) and in this study that peer support from the local team can help mitigate the stress reaction. Therefore, scheduled team meetings during the mission dedicated to discussing issues related to ethical decision making (both before and after) could be a valuable tool in helping HCPs move through these issues and process the psychological impact. While pre-departure training tools may help to prepare HCPs, a framework for guidance and support during the actual mission may be the most beneficial tool to develop.
One aspect of the findings goes beyond the need for organizations to provide training or support for HCPs. It relates to a deeper issue of organizational ethos and expresses the urgent need for humanitarian organizations to admit to and address the direct impact of ethical challenges on HCPs in the field. This is highlighted by the participants’ commonly shared experience of being “held hostage by institutional constraints.” The current study extends the previous discussion on this issue (Schwartz et al. 2010; Hunt 2008) by elaborating on multiple ways that participants felt their organizations were restricting them: feigning ignorance, silencing them, and hiding behind bureaucracy. HCPs in the current study struggled with feelings of being silenced and ignored by their organization when they reached out for help and guidance in times of ethical challenges. As a result, participants commonly had strong and long-lasting negative emotions towards the organizations they worked for and expressed that they no longer wanted to go on missions in the field.
These findings suggest that organizations have an imperative to address the ways that they both cause and exacerbate ethical challenges experienced by HCPs. Turning a blind eye to ethical issues in the field does not remove an organization’s culpability for their actions. The “feigning of ignorance” allows an organization to make public programmatic decisions that are ethically responsible while at the same time putting their workers in the position of encountering ethical challenges in the field. This raises the issue that for an organization to support their HCPs to the fullest, they must also admit that moral distress is a real issue. There is a rather large challenge of first having humanitarian organizations admit that the guidelines regarding their boundaries of moral responsibility do not necessarily encompass all of the applied decision making in the field. The authors suggest that the first step in the right direction would be to further understand the nature of how organizations respond to ethical challenges in the field and the negative fallout from the burden of these choices on HCPs.
This study achieved its main objective of evolving an understanding of how HCPs perceive ethics and ethical challenges, and the impact that these issues have on them. Understanding moral distress as related by HCPs is the first step to understanding how the negative reactions can be alleviated. Being able to identify the ethical challenges experienced by HCPs and the impact they feel from them will assist organizations to plan suitable frameworks for training and guidance in ethical challenges. This will offer improved support for their HCPs and in turn improve public healthcare provision in the time of HCs. However, first humanitarian aid organizations must recognize the role they play in creating issues surrounding ethical decision making, in order to ever be able to fully support their workers. To build on this study, the next step would be to discuss these issues with a larger cohort of participants in order to gain an understanding of a wider range of experiences and perceptions in these topics.
One possible limitation of the current study is the use of Skype interviews. After the discussion between the co-authors, it was determined that accessing a wide variety of experiences was more important than being limited by geographical constraints. Deakin and Wakefield (2014) identify that Skype interviews allow for increased flexibility and equivalent rapport-building with participants. Another limitation is inherent in the nature of the study design, which included HCPs from a variety of roles and HCs. Further research could pinpoint specific stages of HCs and narrow down specific ethical challenges encountered in each. The small sample size was another limitation, including the snowball method of sampling, which could mean that individuals with similar views may be more likely to be recruited. Furthermore, the participants in the present study were all expatriate HCPs, which means that the voices of local HCPs native to the countries affected by the HC are excluded. A future, expanded project with a larger sample size including non-expat participants is important. By interviewing individuals with a variety of roles from an array of organizations, the authors hoped to reduce this limit. Further qualitative in-depth study into this topic with a larger and more varied sample size is a direction for future research.
Comprehensive public health response during HCs often requires the assistance of HCPs from external organizations. These workers must deal with constraints from both their administrations and the resource-scarce environment. Research has begun to explore the field of ethical dilemmas and challenges in healthcare work in HCs. This study indicates that HCPs in HCs experience ethical challenges in a variety of ways and that they feel negatively impacted both personally and professionally by these conflicts. More research is needed that deepens an understanding of the perceptions of the ethical decision making experienced by HCPs in HCs and the feelings of moral distress they experience as a result. This will assist in developing tools to prepare for and respond to these situations encountered in the field in a way that supports HCPs both psychologically and in care delivery. Public health service provision in HCs will be positively impacted if the HCPs that deliver care are able to work at their optimal capacity.
We thank the participants in this study who willingly shared their experiences and thoughts.
This work was not supported by any funding bodies.
Both authors designed the study together. SG carried out the literature review and data collection. SG led the data analysis and preparation of the manuscript with support, editing and input from ECG. ECG provided a critical review of the manuscript. Both authors read and approved the final manuscript.
The authors declare that they have no competing interests.
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