Burnout and compassion fatigue among organ donation coordinators: A Canadian perspective

Abstract

Aim: To understand the experiences and perceptions of burnout and compassion fatigue among Organ and Tissue Donation Coordinators (OTDCs) in Canada.

Methods: A series of virtual focus group discussions were held with OTDCs from across Canada to discuss burnout and compassion fatigue as part of a national research project in collaboration with Canadian Blood Services, the organ donation and transplantation community, and experts in the field.

Results: 11 participants, including Canadian OTDCs and experts in the area of burnout, compassion fatigue and organ donation, participated in the discussion. OTDCs agreed that the high pressure and demands of their role challenge their workplace wellbeing and mental health. As a result, some of the OTDCs have recognized signs and symptoms of burnout and compassion fatigue throughout their career. Although OTDCs support each other and develop their own personal coping and protective strategies, there is a continued need to develop specific strategies to help mitigate work-related issues and increase retention of experienced OTDCs in Canada.

Conclusion: the highly demanding role of OTDCs in Canada have challenged their mental health and work-related wellbeing, leaving them more susceptible to experiencing issues such as burnout and compassion fatigue. Future research is needed to investigate the levels of work-related issues among OTDCs, as well as to develop specific interventions to help support the work-related wellbeing and mental health of these professionals.

Silva e Silva, V., Bourret, M., Carta, T., Matheson, S., Rivett, H., Taylor, J., van Rassel, B., Butler, H., Baker, J., Rochon, A., Silva, A. R., de Aguiar Roza, B., Appleby, A., John, P., Trompeta, J., Stoddard-Murden, R., Lotherington, K., Hornby, L., Sarti, A., & Dhanani, S. (2021). Burnout and compassion fatigue among organ donation coordinators: A Canadian perspective. The Canadian Journal of Critical Care Nursing, 32(4), 14–20. DOI: 10.5737/23688653-3241420

Implications for Nursing

• Burnout and compassion fatigue are work-related issues that impact the mental health and wellbeing of Organ and Tissue Donation Coordinator (OTDC) nurses given the demanding and high-stress nature of their daily work.

• OTDCs support each other and develop their own personal coping and protective strategies, but these have not been enough to sustain their work-related wellbeing and further investigations on how to better support the mental health of these professionals are needed.

• Results from this study draw attention to work-related issues such as burnout and compassion fatigue among OTDCs and the consequences of working in a highly demanding environment.

• This study will inform future research to further illustrate our findings and develop strategies to help mitigate those issues, and improve quality of life, work wellbeing and mental health of OTDCs.

Background

Organ donation processes are highly specific and take place in complex, interdependent and interprofessional healthcare settings and are frequently encountered in critical care areas (Rosen et al., 2018). The success of organ donation programs depends on a combination of process, structural and contextual factors (Silva e Silva et al., 2021) but the most important one is undoubtedly the role of Organ and Tissue Donation Coordinator (OTDC) nurses.  This role requires a vast amount of knowledge and skills in order to provide optimal care to organ donors and their families, including excellent therapeutic communication skills, extensive critical care  nursing knowledge, ability to engage in interprofessional collaboration, and ethical posture (Silva e Silva et al., 2021). Experienced critical care nurses have the extensive background required to work in the OTDC role. They identify patients who may be suitable organ donors, and thus play a part in increasing the potential number of organ donors (O’Leary, 2018). Critical care nurses are often tasked with caring for organ donors, maintaining organ viability and preparing them for organ procurement, while simultaneously providing support and reassurance to the donor family (O’Leary, 2018). Although it has not been an absolute requirement for organ donation programs worldwide, the OTDC role is typically filled by skilled, compassionate registered nurses (RNs) with critical care experience (Heredero & Berzosa, 2012), or specific organ donation certification or specialized training (Mendes et al., 2012). The OTDC role is multifaceted and fraught with many challenges (Danet & Cardoso, 2020; Mercado-Martinez et al., 2013). OTDCs work in high-pressure and demanding environments involving several stressors; dealing with families in their most vulnerable state following tragic events with their loved ones and striving to provide a positive experience throughout the organ donation journey (Danet & Cardoso, 2020; Jesse et al., 2015). The constant exposure to stressors, pressure and grief can lead OTDCs to experience compassion fatigue and/or burnout, which are conditions characterized by emotional, physical and mental exhaustion (Koinis et al., 2015; Mao et al., 2018). Work-related issues, such as burnout and compassion fatigue, can negatively affect workplace wellness, productivity and quality of life for healthcare professionals (HCPs), and leave them more susceptible to errors and/or adverse events that can negatively impact outcomes for organ donation as it can lead to missed opportunities of donation, reduced quality of organs and elevated costs for the healthcare system (Chandler et al., 2017; Koinis et al., 2015; Mao et al., 2018). 

The majority of OTDCs in a Chinese study experienced burnout, with reduced personal accomplishment being the main clinical feature (Mao et al., 2018). Similarly, OTDCs in Turkey reported relatively high levels of burnout with low levels of personal accomplishment (Kader et al., 2013). No studies specifically measuring the incidence of compassion fatigue among OTDCs were found in the literature, however, a recent review of the literature identified a high prevalence of compassion fatigue among critical care nurses (Alharbi et al., 2019). Burnout and compassion fatigue can impact turnover, retention rates, psychological health, and organ donation outcomes (Danet et al., 2019; Fonseca & Tavares, 2016; Kress, 2009; Lima et al., 2009). With a lengthy and intensive training process for new OTDCs, the cost of attrition and turnover can be significant. While no cost information about OTDC turnover is currently available, the majority of OTDCs are RNs; a recent Canadian study estimated that the rate of annual turnover for RNs is 20%, with an estimated cost of $27,000 per nurse (Rondeau & Wagar, 2016). Although there is evidence to suggest that work-related issues can impact OTDC wellbeing and organ donation outcomes, there is a lack of studies investigating this issue in Canada. While the majority of Canadian provinces have an opt-in system for organ donation, Nova Scotia is the first province to recently adopt an opt-out system. Therefore, the aim of this study was to bring together a sample of OTDCs from Canadian Organ Donation Organizations (ODOs) and experts in the field to discuss and share their experiences on the impact of burnout and compassion fatigue among OTDCs and the importance of further investigation of this topic in Canada.

Methods

In this study, we used a qualitative descriptive approach to explore the perceptions of a sample of OTDCs related to burnout and compassion fatigue. Qualitative descriptive design allows the researcher to explore issues pertinent to healthcare settings while staying closer to the data (Denzin & Lincoln, 2011; Tong et al., 2007). Additionally, we used focus group to generate qualitative data from collective views around the topic of interest (Mishra, 2016).

A series of virtual focus group discussions were held with OTDCs from ODOs across Canada to discuss burnout and compassion fatigue as part of a national research project in collaboration with Canadian Blood Services (CBS), that provided funding for this project through their Centre for Innovation, the organ donation and transplantation community, and other experts in the field. We used a focus group approach as it allows the collection of in-depth data around the experiences and views of a group of people while offering for the participants more control of the interaction (Stewart & Shamdasani, 2017; Tritter & Landstad, 2020). However, in focus groups, participants may also feel uncomfortable to voice their experiences if their thoughts are different from the ones expressed by the rest of the group, and thus, attention is required to ensure that everyone has the opportunity to speak and share their experiences during the discussion process (Stewart & Shamdasani, 2017; Tritter & Landstad, 2020). An invitation letter was sent to the Donation and Transplantation Administrative Advisory Committee (DTAAC) within CBS providing information about the study and requesting the contact of potential participants from the Canadian provinces, as it is DTAAC’s  responsibility to provide advice to inform and guide the development of national initiatives to support interprovincial activities in the area of organ donation and transplantation in Canada (Donation and transplant administrators advisory committee 2020). Then, individual ODO managers from all provinces were contacted with information about this collaborative project and asked to appoint OTDCs representatives, and five ODOs responded positively. Finally, the OTDCs designated by the five ODOs were contacted and invited to participate in the discussion.

For the initial discussion, we arranged a conference call through Zoom® on a pre-determined date in accordance with the availability of participants. Prior to this initial meeting, OTDCs were provided with key literature about burnout and compassion fatigue specific to organ donation and transplantation to review and reflect on the topic. The meeting was recorded, was an hour in duration, and was facilitated by the national research lead (V.S.S.), the project manager (K.L.), and two research assistants (A.R. and A.R.S.). The discussion was guided through a semi-structured interview format using open-ended questions to allow the participants to share their opinions and experiences (Finlayson et al., 2019; Moll, 2014). Some examples of the questions from the interview guide were: Do you think burnout and compassion fatigue are problems faced by you and/or your OTDC colleagues (if so, please explain)? What, in your opinion, may be the triggers or causes of burnout or compassion fatigue? and etc. During the video conference, there were a total of 11 participants that included OTDCs representing the Canadian provinces of British Columbia (n=2), Quebec (n=1), Manitoba (n=1), Ontario (n=3), and Nova Scotia (n=1), as well as international participants with expertise in burnout/compassion fatigue (n=2) and organ donation (n=1) to enhance the discussion. The aim of the discussion was for OTDCs to voice their views and experiences about burnout and compassion fatigue and the importance of this topic in the Canadian context, as well as experts in the field to contribute with their academic experience and share evidence to further explore the perceptions of the OTDCs.

After the meeting was conducted, the core research team members reviewed their notes and recordings to identify themes that were highlighted during the discussion through an inductive approach (Graneheim et al., 2017). An inductive approach is useful to condense extensive and varied raw data into a concise summary format (Thomas, 2003). For this data analysis we followed five steps: initial read through data, identification of specific segments of information, labeling segments of information to create categories, reducing overlap and redundancy among categories, and incorporating the most important categories into themes (Thomas, 2003). We developed a narrative of the themes, and to ensure that the highlights in this collaborative work accurately reflected the discussions held, the narrative was reviewed and validated by all the attendants through a series of online meetings (Zoom®) and electronic communications (e-mail). The Research Ethics Board (REB) at the Children’s Hospital of Eastern Ontario was consulted for ethical approval, but as this study is a narrative reflection it was determined that it does not require research ethics board approval in accordance with the Tri-Council Policy Statement. Yet, verbal consent was obtained from those joining the conference calls and they are all included as authors of this paper.

Results and Discussion

Since there is there is little empirical evidence in the literature around this topic of interest in the OTDC nursing population, we aimed to present a more comprehensive interpretation of our findings. Therefore, in this section we opted for presenting the results and discussion combined and presented in a narrative format. Exploring our findings while combining it with prior findings can help the reader to have access to a more comprehensive understanding. No quotations were used in an effort to avoid erroneous attribution of a quote to a participant.

The reflections and experiences that OTDCs shared during the focus group discussions were reported and concurrently discussed across four themes: (1) demands of the OTDC role; (2) burnout; (3) compassion fatigue; and (4) protective and coping strategies: developed and needed.

Demands of the Organ and Tissue Donation Coordinators’ Role

All OTDCs agreed that they work in a high-pressure and demanding environment, and as a result, they need to work quickly and with a heavy workload. OTDCs are key individuals who participate in all phases of the organ donation process in collaboration with other members of the healthcare team such as critical care nurses and physicians. Therefore, the role can  be challenging as OTDCs need to deal with various multi-disciplinary professionals, engage in difficult interactions with families, work in complex environments (e.g., intensive care units and operating rooms) and face multiple demands involved in their role (e.g., family support, research, education and others) (Matesanz et al., 2011). Furthermore, the presence of ethical conflict as it relates to moral distress can contribute to the burden of the role; for example, when the OTDC believes it may not be an ideal time to approach a family due to the emotional distress the family is facing, but they still go forward with the approach focusing on obtaining informed consent for organ donation due to organizational pressures as organ donation cases are time-sensitive. Ethical conflicts have been reported in the literature as a common source of stress among OTDCs as they constantly face situations where their attitudes are conflicting with their values, or there is a mismatch between their personal values and values of the others involved in the organ donation process (Danet et al., 2019; Fonseca, 2017; Tarabeih & Bokek-Cohen, 2020).

The size of the program and number of OTDCs can vary widely across Canadian ODOs. In smaller programs, OTDCs concurred that they are particularly affected by the multiple tasks of their role, as they may need to work extra hours to cover all shifts in the schedule. Even when they are not working, they may be in constant contact with colleagues to offer support for organ donation processes and difficult cases. For example, OTDCs reported using group chats or text messages to stay connected and offer support to ongoing donation cases sometimes even during non-working hours. There were variations in the intensity of the issues reported by OTDCs depending on the province where they worked. Yet testimonies were similar in their reports of the high pressure, challenges, and demands of the OTDC role, and the impact on their wellbeing.

Burnout

Burnout is a psychological state that occurs in response to prolonged exposure to interpersonal and emotional job stressors and the accumulation of risk factors (Bury, 2019; Maslach et al., 2001; Sinclair et al., 2017). Burnout is considered a multidimensional syndrome that is characterized by three main dimensions: (1) exhaustion (overwhelming physical and mental depletion); (2) depersonalization (cynicism); and (3) reduced personal accomplishment (inefficacy) (Bury, 2019; Maslach et al., 2001). When HCPs are affected by burnout, they become more susceptible to errors in their work environment (e.g., adverse events) and less motivated to work, which can result in reduced quality of care (Chandler et al., 2017). 

There was consensus among the OTDCs that burnout is an important issue in this population and that some of them may have experienced signs and symptoms of burnout throughout their career (e.g., sleep disturbance and diminished patience toward colleagues), which can also impact personal relationships and home life. They also discussed that some barriers they encounter within the system can leave them more vulnerable to burnout, such as complex scenarios involving donor stability, lack of resources, and availability of transplant teams or operating rooms that may prohibit optimal timing for approaching families. Some of the potential ways that OTDCs mentioned could help mitigate these aspects associated to burnout would be the availability of resources to meet their job demands (e.g., electronic platforms such as iTransplant to help reduce the burden of documentation) and development of personal protective and coping strategies. Additionally, OTDCs can feel isolated and alone, especially in smaller programs with few staff and minimal coverage, as OTDCs are responsible for multiple roles (including management of organ retrieval and allocation) that can result in extra working hours which negatively affect their personal lives. Also, in smaller programs, OTDCs felt a lack of control due to the perceived capacity in the scope of their actions. This perceived lack of control and/or professional autonomy and high psychological job demands can result in low job engagement (Blumenthal, 2007; Kress, 2009).

Although these OTDCs agreed that burnout is prevalent in this population, they also discussed that it can be difficult to recognize the signs and symptoms of burnout in themselves or colleagues until they are in an elevated stage. This difficulty in identifying signs of burnout at early stages has been documented in the literature, as burnout has a gradual onset with initial symptoms being subtle enough that they are not recognizable (Hawryluck & Brindley, 2018; Moss et al., 2016). OTDCs also agreed that work-related issues such as burnout and vicarious trauma within teams can perpetuate through social interactions among individuals and impact colleagues who may not otherwise be affected.

Compassion Fatigue

Compassion fatigue is a result of prolonged exposure to human suffering and can manifest as physical, behavioural, psychological, or spiritual symptoms (Sinclair et al., 2017). With repeated exposure to myriad stressors, including ethical dilemmas and investment in outcomes, in addition to grieving and death, OTDCs are at risk of experiencing compassion fatigue. OTDCs mentioned that a source of compassion satisfaction during the organ donation process is to try to give some comfort to families by providing a positive experience. OTDCs work relentlessly to honor the wishes of donors and families and may experience emotional distress and a heavy burden while supporting families through cases with negative outcomes. For example, the level of exposure may also have an impact when an OTDC works on multiple cases with minimal time to recover/decompress in between. Additionally, OTDCs may be overwhelmed by a sensitive case when they do not have adequate time to reflect on their feelings about a situation prior to meeting with a family.

OTDCs discussed that all cases of organ donation are difficult as they are dealing with families in their most vulnerable state following tragic events with their loved ones. However, the OTDCs emphasized two types of cases that can have remarkable personal impact: pediatric patients and organ donation following Medical Assistance in Dying (MAiD). Pediatric patients are impactful as these children die at a young age without the opportunity to properly live their life. If the pediatric death involved non-accidental causes (e.g., domestic violence), this can be an extra burden to OTDCs, as these are vulnerable children who should have been protected and died due to unfortunate conditions that were not in their control. Also, if the case triggers a personal memory or connection, the situation can be even more challenging (e.g., children that resemble someone from their family). Although there is no published literature on the impact of pediatric patients on OTDCs, there is evidence to suggest that for critical care nurses and other HCPs, pediatric patients are a source of moral distress and can potentially lead to the development of burnout and compassion fatigue jeopardizing HCPs’ ability to care (Garros et al., 2015; Gribben et al., 2019; Kase et al., 2019; Mekechuk, 2006; Rourke, 2007).

The availability of MAiD in Canada following legalization in 2016 (Bill C-14), has allowed the possibility for eligible individuals to donate their organs by controlled organ donation after circulatory determination of death (Allard & Fortin, 2017). Organ donation following MAiD is an extremely complex process, charged with moral and ethical dilemmas including conscientious objection and respect for individual autonomy (Allard & Fortin, 2017). For that reason, OTDCs play a significant role in having crucial conversations with individuals about their request and decision to proceed with organ donation following MAiD. In addition, OTDCs provide patient and family support throughout the entire MAiD process that can last over six months, which is relatively long when compared to the management of organ donation cases in the ICU that usually last less than 48 hours (Danet & Cardoso, 2019). Following the patient through the entire journey of saying goodbye before the MAiD procedure, and during the organ retrieval surgery can be emotionally demanding. If the case is prolonged, it can be a cause of substantial stress and potential cause of compassion fatigue for OTDCs. This is not a problem faced only by OTDCs. Since the legalization of MAiD, Canadian RNs are facing conflicting feelings related to their participation in this process, and while for some RNs MAiD is an extension of their profession, for others this can be a source of emotional and moral distress (Beuthin et al., 2018).

Protective and Coping Strategies: Developed and Needed

OTDCs recognized that various stressors can take a toll on them and they have identified a variety of defense mechanisms to help to support their wellbeing. For instance, some OTDCs take time off as a strategy to cope with difficult cases. Nurses and physicians working in demanding environments, such as intensive care units, report strong coping strategies and high levels of work engagement despite the high emotional burden of working in these areas (Mol et al., 2018). OTDCs are frequently reported in the literature to be developing coping and protective strategies to deal with the stressors experienced within their role, such as taking time off, debriefing with peers, focus on the positive outcomes from their role, and others (Fonseca & Tavares, 2014, 2015; Fonseca et al., 2016; Lima et al., 2009; Ponzin, 2015). Although these OTDCs only mentioned positive coping strategies, there are studies showing a concerning pattern where HCPs frequently resort to negative coping mechanisms, such as alcohol and substance use, to cope with their emotions (Kunyk, 2015; Oreskovich et al., 2012). Additionally, OTDCs agreed that resilience, workplace dynamics, and support received from peers and management influence their workplace welfare.

OTDCs mentioned that years of experience in the OTDC role can directly affect the levels of resilience, thus it can be extremely difficult for novice coordinators to deal with the great number of stressors in their workplace. This perceived notion corroborates with findings from the literature that showed professionals with more years of experience working in organ donation are more resilient than novice OTDCs (Powell, 2020). While OTDCs recognize the importance of having protective and coping mechanisms for their wellbeing, some still have difficulty effectively developing these strategies. Therefore, some actions discussed that can be taken at institutional and system level to help supporting OTDCs workplace wellness include training about how to deal with difficult interactions; availability of more resources (e.g., iTransplant and increase in the size of teams); psychological support; and the development of specific education for OTDCs (e.g., specialty for organ donation).

Limitations

This paper highlights the opinion of a group of OTDCs that may not reflect the perceptions of the entire community. The virtual platform, limited meeting opportunities, and the fact that the participants were also authors in this paper may have prohibited some individuals from sharing their views and opinions and may have prevented some minority perspectives from being expressed (e.g., negative coping strategies were not discussed). Also, the small sample size of this study may limit the transferability of our findings.

Conclusions

This reflective narrative voiced the perceptions and experiences of a group of OTDCs related to burnout and compassion fatigue in the Canadian context, which presented aspects that have not been previously documented about this topic. Burnout and compassion fatigue are a result of the demanding and complex situations that these professionals encounter throughout the organ donation process. The high pressures and demands of the OTDC role are affecting their workplace wellbeing and mental health. Thus, understanding the experiences of OTDCs in Canada as a first step toward addressing these negative outcomes is imperative. Although OTDCs support each other and develop their own personal coping and protective strategies, there is a continued need for researchers and institutions to further investigate incidence and impact of moral distress, burnout, and compassion fatigue as a means of developing effective strategies to help mitigate these issues among these professionals in Canada.

In summary, the discussion presented in this paper offers insight about the impact of the demanding role of OTDCs on mental health and wellbeing and provides direction for future research. In order to successfully address these concerns, we must develop interventions to identify and prevent work-related issues, such as moral distress, burnout, and compassion fatigue, improve team cohesiveness and the wellbeing of OTDCs, foster resilience, and maintain the quality and integrity of organ donation programs. Thus, the Burnout and Resilience in Organ and Tissue Donation Coordinators (BRiC) study is currently being developed to examine the rate and experiences of work-related issues among OTDCs, to examine the extent of the problem and potential causative factors, and to develop an intervention to address the key issues identified in Canadian ODOs.

Author Notes

Vanessa Silva e Silva, PhD, RN, Children’s Hospital of Eastern Ontario – Research Institute

Maryanne Bourret, RN, Quebec

Tricia Carta, RN, Manitoba

Shauna Matheson, RN, Nova Scotia

Hayley Rivett, RN, Trillium Gift of Life

Janet Taylor, RN, Trillium Gift of Life

Barb van Rassel, RN, Trillium Gift of Life

Heidi Butler, MScN, RN, BC Transplant

Jenna Baker, RN, BC Transplant

Andrea Rochon, MScN, RN, Children’s Hospital of Eastern Ontario – Research Institute

Amina Regina Silva, MN, RN, Children’s Hospital of Eastern Ontario – Research Institute

Bartira de Aguiar Roza, PhD, Federal University of Sao Paulo

Amber Appleby, MM, RN, Provincial Health Services Authority of British Columbia

Peggy John, Acting Director, Canadian Blood Services

Joyce Trompeta, PhD, International Transplant Nurses Society

Rachel Stoddard-Murden, MSc, RN, NHS Blood and Transplant

Ken Lotherington, Canadian Blood Services

Laura Hornby, MSc, Canadian Blood Services

Aimee Sarti, MD, The Ottawa Hospital

Sonny Dhanani, MD, Children’s Hospital of Eastern Ontario – Research Institute

Acknowledgements

The authors thank the patient partners, Peter Wright, and Diana Brodrecht, for reviewing the manuscript. We would also like to thank Dr. Arzu Kader Harmanci Seren, PhD (Istanbul University) for reviewing the manuscript and contributing an international perspective. Finally, the authors would like to thank Canadian Blood Services for funding this work.

Address for correspondence

Dr. Vanessa Silva e Silva, PhD, RN, CHEO Research Institute, 401 Smyth Rd, Ottawa, ON K1H 5B2

Email: vsilvaesilva@brocku.ca

Funding and Conflict of Interest

The authors have no conflict of interest to disclose. Funding for this work was provided by Canadian Blood Services.

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