Barriers and Enablers to Organ Donation After Circulatory Determination of Death: A Qualitative Study Exploring the Beliefs of Frontline Intensive Care Unit Professionals and Organ Donor Coordinators.

BACKGROUND: A shortage of transplantable organs is a global problem. The purpose of this study was to explore frontline intensive care unit professionals' and organ donor coordinators' perceptions and beliefs around the process of, and the barriers and enablers to, donation after circulatory determination death (DCDD).
METHODS: This qualitative descriptive study used a semistructured interview guide informed by the Theoretical Domains Framework to interview 55 key informants (physicians, nurses, and organ donation coordinators) in intensive care units (hospitals) and organ donation organizations across Canada.
RESULTS: Interviews were analyzed using a 6-step systematic approach: coding, generation of specific beliefs, identification of themes, aggregation of themes into categories, assignment of barrier or enabler and analysis for shared and unique discipline barriers and enablers. Seven broad categories encompassing 29 themes of barriers (n = 21) and enablers (n = 4) to DCDD use were identified; n = 4 (14%) themes were conflicting, acting as barriers and enablers. Most themes (n = 26) were shared across the 3 key informant groups while n = 3 themes were unique to physicians. The top 3 shared barriers were: (1) DCDD education is needed for healthcare professionals, (2) a standardized and systematic screening process to identify potential DCDD donors is needed, and (3) practice variation across regions with respect to communication about DCDD with families. A limited number of differences were found by region.
CONCLUSIONS: Multiple barriers and enablers to DCDD use were identified. These beliefs identify potential individual, team, organization, and system targets for behavior change interventions to increase DCDD rates which, in turn, should lead to more transplantation, reducing patient morbidity and mortality at a population level.

In this article, we explore frontline intensive care unit (ICU) professionals’ and organ donor coordinators’ perceptions and beliefs around the process of, and the barriers and enablers to, donation after circulatory determination death (DCDD). Organ donation is a life-saving or life-enhancing opportunity for people with end-organ failure. However, there continues to be a serious global shortage of organs in comparison to demand. In the United States, the organ shortage is estimated to be as high as 83 000 each year, 29% of their need. In the United Kingdom, a shortage of 6389 organs is reported, 27% of their need[1] and in Canada, a shortage of 2100 organs each year is estimated, 50% of their need.[2] This global lack of available organs for donation results in lengthening of organ transplant wait lists which has serious population health consequences, most importantly being the increased likelihood of individuals dying while waiting for a life-saving donation.[3]

The majority of transplanted organs are received from deceased donors (approximately 85%).[4] The rate of donation by donation after neurological determination of death has plateaued internationally in recent years, largely from the success of head injury prevention programs and strategies and also potentially in part by the growing support for DCDD.[5-7] Donation after circulatory determination death rates show the greatest potential for growth; for example, in the United States and Canada, DCDD cases account for only 16% and 21% of total donations made by deceased donors respectively, which is comparable to the global average of 16.9% reported in 2016.[8,9] However, a potentially achievable benchmark is that of the United Kingdom where in 2016, DCDD accounted for greater than 34% of deceased donors.[10]

Barriers and Enablers to DCDD

Donation after circulatory determination death is a complex process with many interacting and parallel factors that can both inhibit (act as barriers) or promote (act as enablers) it. To develop interventions to increase DCDD that will have more pronounced and sustainable effects, knowledge of these barriers and enablers is critical. However, reasons for low DCDD rates are understudied and as a result, poorly understood. Perceived barriers, suggested in a limited number of studies, include varying clinician attitude, time and logistical constraints, ethical concerns related to withdrawal of life sustaining treatments and premortem interventions, inability to predict time of death to optimize DCDD, unknown incidence of autoresuscitation, and ethical/legal concerns about violation of the “dead donor rule” which states that organ retrieval itself cannot cause death.[11-15] Recently, a review of global barriers to organ donation, found DCDD largely depends on the existence of: (1) appropriate policies for the withdrawal of life-sustaining treatments and (2) specific protocols for the timing of interventions, such as the use of medications, the time between cardiac arrest and organ recovery, declaration of death, and organ retrieval, which are lacking in many institutions.[16] The ethical discomfort that many physicians feel with the management of comfort care was also mentioned as a barrier to effective DCDD processes. For example, some medications commonly used to ease pain (relief of discomfort) also have unintended adverse effects (eg, depressing the donor's respiratory drive and decreasing their blood pressure) which shortens their life.[16]

Enablers of DCDD, also discussed in a small number of reports, include system level initiatives. For example, the United Kingdom's National Organ Retrieval Service, is credited with having played a vital role in contributing to their recent increases in deceased donors and organ transplants. The service, established by the National Health Service Blood and Transplant in April 2010, provides a 24-hour service for retrieving organs from deceased donors. The service has been highly successful; the number of deceased organ donors in the United Kingdom increased by 50% between 2007 and 2013.[17,18]

No studies to date have investigated key factors which may impact the use of DCDD, such as considering perspectives of multiple healthcare professional groups and geographical differences. Further, no studies have specifically investigated DCDD from a behavioral theory approach which encompasses both barrier and enabler assessment of the broad range of the possible multifactorial determinants of DCDD. Therefore, the purpose of this study was to explore frontline ICU professionals' and organ donor coordinators' perceptions and beliefs around the process of, and the barriers and enablers to, DCDD. A behavioral theory perspective using the Theoretical Domains Framework (TDF) was taken. The TDF is a robust behavior change framework comprised of 14 theoretical domains derived from 33 different health, behavioral, and social psychology theories that explain health-related behavior change.[19,20] Although the TDF has been used previously to successfully identify the determinants of a wide range of healthcare professional behaviors,[21-28] this is its first application in the study of DCDD.

MATERIALS AND METHODS

Study Design and Sampling

A qualitative descriptive design was used. Semistructured interviews were conducted with intensivists, intensive care nurses, and organ donor coordinators from across Canada to determine their: (1) beliefs and attitudes about DCDD and (2) their perceptions of the multilevel factors that influence DCDD. A list of eligible participants in each key informant group from across the country (divided by region) was compiled by the national research team. A purposive and stratified (by key informant group and region) sampling strategy augmented with snowball sampling was then used to obtain information-rich cases and to ensure that each key informant group in all Canadian regions were represented in the final sample. The regions were: Atlantic Canada (New Brunswick, Nova Scotia, Newfoundland, Prince Edward Island); Ontario; Quebec; and Western Canada (British Columbia, Alberta, Saskatchewan, and Manitoba). The first key informant on each key informant by region list was chosen at random with subsequent key informants selected according to regular intervals. All potential key informants were contacted by email, we sent 2 follow-up emails to all nonresponders. Sample size was informed by the concept of data saturation, interviews were conducted until no new information was offered.[29]

Data Collection and Analysis

The TDF informed the development of the semistructured interview guide and the subsequent analysis. A sample interview question for each of the 14 TDF domains is provided in Table 1. Interviews were conducted by telephone and digitally recorded. Interviewing, transcription, and analysis occurred concurrently, data were managed in NVivo software version 10.[30] Data were first analyzed separately for each key informant group and then synthesized across groups. The data were analyzed using a thematic content analysis[31] and occurred in 6 systematic steps. First, 2 team members independently coded the transcripts into the 14 TDF domains. Second, specific beliefs were generated for each utterance (coded interview quote) in each TDF domain. A “specific belief” refers to a collection of participant responses with a similar premise that suggests a problem and/or influence on behavior, in this case on DCDD.[22-24] Following generation of specific belief statements, similar statements were merged. Third, themes were then generated from the merged belief statements, allowing for recognition of similarities and differences across the 3 key informant groups and regions. Fourth, the themes were grouped into broader categories. Fifth, each theme was classified as a barrier or an enabler to DCDD. For a small number of themes, key informants had opposing views (eg, DCDD process is difficult (a barrier)/DCDD process is easy (an enabler)); these themes were classified as “conflicting.” Sixth, themes were examined in relation to whether they were shared (ie, said by 2 or more individuals): (1) across key informant groups—said by at least 1 key informant in 2 or more groups, (2) within a key informant group but not across groups (discipline-specific beliefs), and (3) within a region but not across multiple regions (region-specific beliefs).

TABLE 1

The 14 theoretical domains of the theoretical domains framework

Ethics Approval

Ethical approval was obtained from the Ottawa Hospital Research Ethics Board (protocol 20130635-01H).

RESULTS

Sample Characteristics

A total of 144 participants were approached to recruit 55 key informants for a response rate of 38%. Distribution across regions and key informant groups was intentionally similar through the use of purposive and stratified sampling. Within the sample, there were 22 male (40%) and 33 female (60%) participants. The majority of participants were 40+ years of age (n = 42, 76%) and had 10+ years of clinical experience (n = 34, 62%). Over half (n = 30, 55%) of the participants had hands-on experience with DCDD. Additional demographic details of the sample are in Table 2.

TABLE 2

Sample characteristics (N = 55)

Relevant Theoretical Domains

All 14 TDF theoretical domains were identified as relevant to DCDD with the exception of 1 domain: optimism. More beliefs reflected barriers to DCDD (n = 21 themes across 13 TDF domains) compared with enablers to DCDD (n = 4 themes across 7 TDF domains) (Tables 3-5).

TABLE 3

Barriers to DCDD

TABLE 5

Conflicting themes (acting as barriers and/or enablers) to DCDD

Shared Themes Between Key Informant Groups

Barriers

Eight categories of barriers were identified: (1) education, (2) DCDD guidance, (3) practice variation, (4) roles, (5) resources, (6) support, (7) communication, and (8) personal and public opinion. Twenty-one themes emerged across the 8 categories, 18 (86%) of these themes were shared across key informant groups. The individual barriers themes within each category along with their frequencies (overall and for each key informant group) and an illustrative quote is in Table 3.

The 5 highest frequency themes were mentioned by all 3 key informant groups with a frequency of greater than 60% overall: (1) DCDD education is needed for healthcare professionals (n = 46, 84%; category: education), (2) a standardized and systematic screening process to determine DCDD candidacy or identify a potential donor is needed (n = 45, 81%; category: DCDD guidance), (3) practice variation across regions with respect communication about DCDD with families (n = 45, 81%; category: practice variation), (4) role ambiguity—multiple clinician groups have responsibility to identify/assess if a patient is a potential DCDD candidate (n = 36, 65%; category: roles), and (5) DCDD needs to be well resourced (n = 35, 64%; category: resources).

Enablers

Fewer themes (n = 4) were identified that represented enablers to DCDD. Enabler themes fell into 2 categories: (1) personal and public opinion (n = 3 themes) and (2) resources (n = 1 theme). The 4 themes along with their frequencies and an illustrative quote are in Table 4. Overall, the 4 enabler themes were mentioned less frequently compared to the highest frequency barriers themes, with only 1 enabler being mentioned by greater than 50% of key informants compared with 10 barriers themes. The highest frequency enabler was DCDD/organ donation is a priority for me and I believe it should be an option (n = 35, 64%; category: personal and public opinion). Although this particular enabler was mentioned by all 3 key informant groups, it was mentioned substantially more by nurses (n = 16, 100%) and organ donor coordinators (n = 14, 93%) compared with intensivists (n = 4, 17%). Other enablers included: DCDD/donation is positive and beneficial for recipients (n = 22, 40%; category: personal and public opinion), DCDD is important for families and fulfills patient wishes which act as personal incentives to use DCDD (n = 11, 20%; category: personal and public opinion), and availability of an external dedicated physician for DCDD (n = 10, 18%; category: resources).

TABLE 4

Enablers to DCDD

Conflicting Themes

In some cases, beliefs shared between key informants could be a barrier or an enabler, depending on the key informant interview. Four themes fell into this situation (Table 5). Under the category of DCDD guidance, 41 (75%) of key informants felt the DCDD process was challenging and complex (a barrier), whereas 25 (45%) felt the DCDD process was easy (an enabler); some key informants felt it could be both a barrier and an enabler depending on the situation. Also, within the category of DCDD guidance, there were conflicting views with respect to how difficult (a barrier) (n = 23, 42%) or easy (an enabler) (n = 20, 36%), it is to assess which patients are viable for DCDD. Other conflicting themes centered on: institutional support and funding.

Intensivist-specific Themes

The intensivists were the only key informant group to report discipline-specific beliefs. These beliefs grouped into 3 themes, each of which was a barrier to DCDD. Almost a third (n = 7, 29%) of intensivists commented that it would be a substantial challenge to increase DCDD rates due to reservations from the public that DCDD is unethical. Intensivists were also the only key informant group to report that clinician religious views could act as a barrier to DCDD (n = 4, 17%). Finally, a small number (n = 2, 8%) of intensivists felt that the lack of legislation mandating DCDD was a barrier as it increased concerns about the ethical and legal concerns of DCDD.

Regional Differences

Although the frequency of barriers and enablers themes was largely similar between regions, 2 distinct differences were noted. First, Ontario and Quebec key informants more frequently reported that the process of assessing which patients are viable candidates for DCDD is a difficult process. Second, Quebec and Western Canadian key informants reported that the administration of heparin is unclear, acting as a barrier to DCDD use; this belief was not shared by key informants in any other region.

DISCUSSION

Summary of Findings

To our knowledge, this is the first study to use a comprehensive behavioral theory approach to explore healthcare professionals' perceptions of the barriers and enablers to DCDD. By taking this approach, a comprehensive and systematic understanding of the determinants (barriers and enablers) to DCDD was possible. These determinants, which ranged from individual beliefs to team, organizational and system factors, hold potential as targets for future behavior change interventions to improve DCDD rates.

From this national study, enablers to DCDD were seldom reported, and when they were, they were typically associated with beneficence, such as the positivity felt by organ donors and their families, and by the recipients of the donation. Barriers to DCDD were more commonly reported, with the most frequent barriers relating to: need for healthcare professional and public education on DCDD, need for additional DCDD guidance, the current practice variation in DCDD processes, DCDD role—who is responsible at which stages of the DCDD process, and the significant resources needed to do DCDD. Most barriers and enablers were shared between the 3 key informant groups interviewed, indicating there is much common ground for developing efficient implementation interventions that target multiple players, to improve DCDD rates.

Comparison to Previous Research

Several findings from this study reinforce the limited knowledge we have on barriers and enablers to DCDD practice and its acceptance from previous studies. For example, key themes from this study around the need for more education on DCDD, for training on communication between healthcare professionals and family, and the need for continued development of policy and procedures were also noted in previous studies in the United States.[32,33] Also, similar to past studies, all key informant groups in this study desired additional guidance regarding how to care for the dying patient who is a candidate for DCDD. There is also evidence to support the integration of palliative care into critical care units as a means to maintain a high standard of care for patients while optimizing the potential for organ donation by making the process routine.[34,35] Improving end-of-life care in critical care by means, such as involving palliative care consultants or specific palliative care beds within critical care units, has been shown to be effective in recent studies in terms of improving quality of care and potential for organ donation.[36,37]

Despite longstanding evidence that clearer roles and responsibilities lead to better communication,[38,39] this continues to be a challenge for healthcare professionals as evidenced by the beliefs of participants in this study who eluded to overlapping and unclear roles in the DCDD process. In recommendations specific to DCDD, Steinbrook[40] suggested a “surgical timeout,” or “team huddle,” before the withdrawal of life sustaining therapy as a measure that can be taken to verify roles and responsibilities of the staff compliment when beginning the donation process. Development and implementation of appropriate policy and procedures are also a way to address role clarification along with a systematic protocol for all aspects of the DCDD process from initiation, prognostication to completion which is consistent across regions. Likely holding most potential however to reduce role ambiguity in DCDD is early referral to organ donation procurement programs. These programs remove the burden of assessing an individual's viability for DCDD from busy clinicians and place it with trained organ donor coordinators/specialists following a referral. Early referral programs improves communication with family, helps mitigate ethical concerns of the clinical care team, and ensures that best practices are in place if and when any organ donation, including DCDD, becomes appropriate. The core advantage of this type of program is that it prevents withdrawal of care prior to determination of patient's wishes and potential opportunity for organ donation.[41] Other advantages include provision of: a consultation resource of specialized knowledge and information on organ donation, assistance in clarifying donor eligibility, on-site donor coordinator support when required, early engagement with staff and families, and normalizes the integration of donation into end-of-life care.[42]

Limitations

Although we provide much needed valuable insight into the factors that may influence DCDD, there are some limitations to our study. First, although the specific beliefs identified represent intensivists', nurses', and organ donor coordinators' views about what might influence DCDD, they do not provide evidence of actual influences on DCDD. Second, we limited key informant interviews to groups that most frequently encounter DCDD but other healthcare professionals (eg, emergency and pediatric ICU clinicians) and families of DCDD donors may also have valuable insight into the barriers and enablers to DCDD. Third, it is possible that the 55 key informants participating in the study (who agreed to be interviewed) may differ from the 89 individuals approached who did not agree to participate and may have different perceptions of the barriers and enablers to DCDD. Finally, because the purpose of this study was to identify frontline ICU professionals' and organ donor coordinators' perceptions and beliefs of the barriers and enablers to DCDD, we used a behavior change theory that facilitates the identification broadly of all possible barriers and enablers. This framework does not drill down on any specific barriers or enablers. Thus, we are not able to comment on reasons for incorrect beliefs about DCDD where they existed by interviewees.

CONCLUSIONS

In summary, limited consideration of DCDD continues to be a major challenge globally. This study demonstrated the utility in using psychological theories commonly used in behavior change research to explore the barriers to and enablers of DCDD. Our results provide a much-needed and better understanding of intensivists', ICU nurses', and organ door coordinators' behavior change processes in relation to DCDD and can be used to inform the design of future implementation strategies to improve DCDD rates. These implementation strategies will need to be multifaceted and address the individual clinician, team, organizational, and system-level barriers identified in this study.

Based on our findings, we recommend the following behavior change techniques be part of future multifaceted implementation strategies aimed to improve DCDD: (1) provision of DCDD education to ICU professionals and organ donor coordinators, (2) communication skills training for ICU professionals and organ donor coordinators specific to DCDD situations, and (3) development and implementation of a standardized screening process to identify potential DCDD donors and determine DCDD candidacy. Professional education initiatives could include a national education toolkit for DCDD donor identification and referral. The toolkit can provide resources to ICU professionals and organ donor coordinators (eg, clinical trigger cards, posters, simplified messaging) in areas, such as how and when to identify and refer potential donors, how to effectively and compassionately discuss donation with family members, and how to provide optimal end of life care in DCDD cases. Mandatory skills training in donor identification and referral and importantly, in how to communicate with the multidisciplinary team and families around DCDD, should be offered on an ongoing basis to ICU professionals. Finally, establishment of organizational standardized screening processes to determine DCDD potential donors and candidacy will be critical to improving DCDD rates. These processes should be documented in easy-to-follow checklists and policies and make clear distinctions between referral and notification to organ donor organizations.