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Abstract

Background. Potential organ donors are carefully assessed by expert clinicians (donation specialists) who evaluate a variety of factors, including balancing potential transplant benefits and biovigilance risks, under time constraints. We aimed to identify and understand the factors that donation specialists consider when appraising a potential organ donor and how they balance the risk and benefits when determining the medical suitability to proceed to donation. Methods. Exploratory qualitative study involving semi-structured interviews with 12 donation specialists in NSW, Australia. Interviews included 1) open-ended questions focused on the general potential organ donation pathway and 2) hypothetical potential donor scenarios, with participants invited to voice their decision-making process. Interviews were audio-recorded, transcribed verbatim, and analyzed using the framework method. Results. We identified 3 themes: 1) from automatic exclusions to more collaborative decision making; (2) “risk appetite,” uncertainty, and information gaps; and 3) the role of recipients and their families in decision making. Deceased donor medical suitability was determined by a complex interplay of clinical practice guidelines, guidance from colleagues, and personal risk propensity, with variability in decision making irrespective of standardized information provision. Decisions that a potential donor was unsuitable were often driven by compounding risks, accentuated in the context of missing information and incomplete medical histories. Considering both potential donor and potential recipient profiles in tandem and including potential recipients and/or their families in decision making was considered important. However, narratives were marked by frustration with patients’ risk propensity and challenges with communication under time pressure. Conclusion. Clinicians assessing the medical suitability of potential deceased organ donors face challenges such as incomplete medical histories and communication barriers. Decision-support tools and early engagement with potential recipients and their families to elicit their preferences and risk tolerance could aid clinicians in making more informed decisions under time pressure.

Highlights

In this qualitative study with Australian donation specialists, we found that potential deceased donor medical suitability was determined by a complex interplay of clinical practice guidelines, guidance from colleagues, and personal risk propensity, with variability in decision making irrespective of standardized information provision.

Decisions to forego a potential donor were often driven by compounding risks and worsened by missing information and incomplete medical histories.

Considering both potential donor and recipient profiles in tandem and including the recipient and/or their families in decision making were considered important but challenging under time pressure.

Keywords

medical decision making organ donation risk transplant

Globally, there is a shortage of donor organs.¹ Efforts to increase the donor pool across clinical contexts have included increasing the acceptance of extended criteria donors who have morbidity that may affect the longevity and function of the donor organ, donors who died from circulatory deaths, and donors with biovigilance concerns.^2–4 In these cases in particular, the inadvertent transmission of infectious diseases or cancer with donor organs is a central concern in transplant programs (i.e., biovigilance) but must be balanced against substantially reduced quality of life (QoL) and reduced survival experienced by people waiting for a transplant; some people may die waiting.^5,6

Unsurprisingly then, the organ donation process is complex, involving a coordinated effort from multiple medical professionals to ensure that donation and transplantation procedures are safe, efficient, and effectively managed. Donation specialists, in collaboration with the donor’s medical team, assess medical suitability based on clinical practice guidelines that outline risk estimates for potential transmission of infection and cancer and draw on comprehensive evaluations such as tissue typing, serology, clinical examinations, and a review of the donor’s medical and social history.^7–9 Potential donors may be deemed “not medically suitable” for several reasons, including if their organs are determined by clinicians to have irreversible damage and/or if there is a perceived significant risk of transmission of infection or cancer.⁹

For certain infections and cancers, risk estimates in clinical guidelines are linked to clear recommendations. However, where recommendations exist, they use estimates of infection and cancer transmission from donor organs that are biased toward transmission events, as cases of nontransmission have historically not been well reported.^10,11 Beyond this, guidelines cannot provide recommendations on all potential scenarios; in many instances, the decision whether to proceed with donation and transplantation needs to be made on a case-by-case basis, with the final decision left to individual donation specialists. In these instances, clinical decision making is influenced by other factors including the risk attitudes and tolerance of clinicians who are forced to make decisions in time-pressured situations and while integrating a lot of information.¹²

Although several key factors likely influence medical decision making in this context, there is little evidence related to their potential interplay when determining the medical suitability of deceased organ donors. We aimed to identify and understand the conscious, deliberative decision-making factors that donation specialists consider when appraising a potential organ donor and how they balance the risk and benefits when determining donor medical suitability for organ transplantation. This study focused on decision making during biovigilance assessments for donor medical suitability and information-guiding decisions.

Methods

Study Design

We used an exploratory qualitative research design, with semi-structured interviews with donation specialists involved in determining deceased donor organ medical suitability. The study drew on phenomenology as a theoretical orientation and research methodology. Phenomenology is concerned with understanding human experience in terms of “individual consciousness.”¹³ The empirical focus is on the individual experience, appropriate for our interest in donation specialists’ decision making. The reporting of this qualitative study follows the consolidated criteria for reporting qualitative research (COREQ criteria).¹⁴ Ethical approval was obtained through the University of Sydney Ethics Office (ref 2022/108).

Study Setting and Context

This study was conducted in New South Wales, Australia. In New South Wales, guidance in relation to the medical suitability of potential donors is provided by the Transplantation Society of Australia and New Zealand (TSANZ) guidelines.⁹ For individual decisions, the senior treating doctor is responsible for referring patients in intensive care or emergency departments receiving end-of-life care to the Organ and Tissue Donation Service (OTDS).⁸ Once referred, donation specialists, including donation specialist nurses, coordinators, and donation specialist medical officers (e.g., surgeons, nephrologists, hepatologists), offer expertise in the organ donation process.^8,15 Donation specialists assist in preparing for family discussions regarding end-of-life care and consent for organ donation, and they provide guidance on evaluating donor medical suitability (Figure 1).^8,15,16

Figure 1

Organ referral process in NSW, showing biovigilance decision points.

Study Participants

Participants in this study were donation specialists (i.e., health care professionals determining potential donor/organ suitability for transplantation) working in New South Wales (NSW), Australia. Donation specialist roles included donation specialist medical officers (consultants, surgeons, and state medical directors), donation specialist coordinators, donation specialist nurses, and transplant coordinators. All interviews were conducted online via videoconferencing software.

Participant Recruitment

Donation specialists were identified and contacted through professional networks and invited to participate via e-mail (e.g., the NSW OTDS e-mail list). These individuals were sent a link to the Participant Information Statement and invited to complete the consent form if they were interested in participating.

Data Collection Procedure

A female public health researcher (P.P.), with experience in qualitative interviewing, conducted all participant interviews between April 2022 and November 2022. P.P. held no clinical role and was not known to participants prior to contacting them for an interview.

Interviews were semi-structured and based on a flexible topic guide developed by the research team to understand how participants determine donation suitability and what information helps them make their decision. The first half of the interview focused on the general organ referral pathway and overall decision-making process. The second half of the interview provided participants with hypothetical scenarios involving fictional potential donor and recipient profiles (Supplementary File 1). This methodological approach aligns with the objective of the interviews to explore conscious, deliberative decision making among donation specialists.

Hypothetical scenarios were developed by the multidisciplinary team comprising both clinicians and researchers and drawing on real-world clinical cases. The hypothetical scenarios were based on common potential donor profiles, including biovigilance risk. We were interested particularly in how biovigilance risk tolerance might change thinking, as our prior work has shown that biovigilance concerns lead to inconsistent and variable decisions by clinicians.^10,11,17 One scenario involved a greater than baseline risk for transmitting a blood-borne virus infection; the second scenario included a cancer history of low risk for transmission. Both scenarios included other common medical illnesses hypertension and diabetes and clinical information that would usually be highlighted to decision makers.

For each scenario, participants were asked to voice their decision-making process and discuss the risks and benefits considered when assessing the medical suitability of the fictional donor. As the discussion progressed, additional details about the fictional donor were gradually introduced (e.g., serology results, existence of long-standing health conditions, drug and alcohol use), followed by the presentation of a fictional recipient profile. This information timeline closely mirrors the usual time-pressured context of potential donor cases, in which clinical details and medical history evolve dynamically. The ranked list of potential recipients of a donor organ is generated only once a decision is made for the potential donor to proceed to actual donation. Each time, the participants were asked to discuss if their assessment had changed in response to the updated scenarios and clinical information (e.g. “If this was 300 µmol/L creatinine, would your decision change?”). This iterative approach was designed to capture any differences in risk assessment and how participants adjusted their evaluations based on new information, allowing participants to explore their thinking about specific challenges from a higher-order cognition perspective. It was also purposefully designed to align with how donation specialists in the Australian context typically receive information in stages—often shaped by emerging test results or conversations with family—first about the donor and only later about the recipient. Additional simple (e.g., “Can you tell me more about that?”) and clarifying probes (e.g. “When you say XXX, what does that mean to you?”) were used at the interviewer’s discretion.

Interviews lasted 25 min on average. All interview transcripts were audio-recorded, anonymized, and transcribed verbatim by P.P. and R.B.C.

When determining the sample size, we used the concept of information power rather than theoretical saturation.¹⁸ Information power is based on the concept that the more information held by study participants relevant to the research question(s), the smaller the sample size needs to be.¹⁸ The adequacy of the final sample size was evaluated continuously during the research process, considering 1) the relatively narrow study aim, 2) “strong” interview dialogue from participants who openly shared their views and experiences, and 3) the in-depth exploration of narratives through the analysis process.¹⁸

Data Analysis

The interview data were analyzed using the framework analysis method, with data managed in Word and Excel. Authors P.P., D.M.M. and R.D., with input and oversight from other research team members, analyzed the data in an iterative manner, using an analytical approach that was both inductive (data driven) and deductive (researcher driven), based on the research questions, to develop a coding framework to reflect emerging patterns and themes. P.P., D.M.M., and R.D. read all the transcripts to guide the development of the coding framework. In discussion, all authors identified relationships among and between categories to generate themes, and any conflicts were resolved by discussion until agreement. This refined framework was then applied to all transcripts, and the relevance of emerging themes were corroborated and checked across the full coded dataset.

Results

A total of 12 donation specialists took part in the interviews. This included 6 donation specialist medical officers (including nephrologists, hepatologists, and surgeons), 4 donor specialist coordinators, and 2 transplant coordinators. The level of experience in determining the medical suitability of donors ranged from recently starting in the role to extensive experience over multiple decades. Participant characteristics are outlined in Table 1.

Table 1

Participant Characteristics

Participant Characteristics	Number (%)
Sex
Female	6 (50)
Male	6 (50)
Role
Donation coordinator specialist	4 (33)
Donation specialist medical	6 (50)
Transplant coordinator	2 (17)
Average potential donor decisions per month
0–10	4 (33)
10–50	5 (42)
More than 50	3 (25)
Years working since completing health care training
0–19	4 (33)
20–29	3 (35)
30+ years	5 (42)

Theme 1: From Automatic Exclusions to More Collaborative Decision Making

“As a first you just say ‘right, they’re not suitable’.”

Initial decision making regarding whether a potential donor progressed to donation was reported to center on automatic exclusions, with participants acknowledging, “First of all, we kind of do an overall donor assessment, is there anything that would absolutely exclude them? So, for example, metastatic cancer” (P3, donation specialist coordinator). This stage was often supported by the advice and recommendations in the Transplantation Society of Australia and New Zealand (TSANZ) Clinical Guidelines for Organ Transplantation from Deceased Donors.⁹ Participants, in particular the donor specialist coordinators, reported that they routinely used these to guide decisions about donor profiles, referring to the guidelines as a “really useful adjuvant” (P4, donation specialist medical), particularly in relation to malignancy risk, for which there were “automatic exclusion criteria” (P2, donation specialist coordinator). Participants described this as a task in which they were initially looking for any obvious reason to exclude as a starting point, using the TSANZ guidelines to rule out potential donors who would definitely not be suitable to proceed to donation.

We also use that, in conjunction with TSANZ guidelines, it’s got a malignancy section to it which is really helpful for us to say right this cancer, the grading of the risk is this, so that will be excluded. (P5, Donation specialist coordinator)

Complexity and collaboration

As decision making became more complex, participants attended to additional donor factors including “age, and then their presenting reason to hospital and then significantly their past medical history” (P5, donation specialist coordinator). Here, donor specialists reported moving beyond the guidelines, with many adopting a more “collaborative” approach at this stage. Donation specialists frequently engaged in discussions and sought support from colleagues and other external clinical consultants. These collaborative consultations were framed as essential when assessing overall donor suitability in the context of multimorbidity and complex medical histories that did not fit squarely within the boundaries of automatic exclusion.

I’ve been doing this job now for 30 years. So regardless of our educational training and position, we do have a collaborative sort of discussion. (P10, Transplant coordinator)

The long-standing hypertension is quite concerning, especially for 45-year-old, and I would probably at this stage have called a renal physician; I’m quite concerned about his past medical history . . . current acute kidney injury and the fact that he’s a high-risk IV drug user and he drinks as well. (P7, Donation specialist coordinator)

I would get advice from an oncologist about the prognosis [before proceeding]. (P8, Donation specialist medical)

Passing the “risk baton”: Decisional roles and responsibility

While collaboration was considered key, participants’ narratives also highlighted the ways in which decision making was role dependent. Donation specialist coordinators’ decisional remit, for example, was often centered on automatic exclusion; for more ambiguous decisions, participants expressed that it was their responsibility to pass information on to others for them to “make that decision with their recipients as [sic] whether they are happy to accept” (P3, donation specialist coordinator). Here, responsibility for complex decision making was often seen to sit with senior donation specialists and/or with transplant coordinators and other transplant specialists responsible for transplant recipients and their families.

Because at the end of the day we don’t really make that decision, we actually just consider whether that’s something that would exclude them completely. This is prior to going and meeting with the family for consent for donation. (P3, Donation specialist coordinator)

The transplant coordinators or physicians who are receiving this information, and I just highlight those facts and they can make their own decision. (P7, Donation specialist coordinator)

There was an acknowledgement that donation specialists at different stages of the donation and transplantation process would have differing propensities for risk.

As the medical director and looking at medical suitability, [I] will say yes. But . . . transplanting centers will be a bit more hesitant. (P4, Donation specialist medical)

Theme 2: “Risk Appetite,” Uncertainty, and Information Gaps

Risk was identified as a major theme. A few participants spoke about risk appetite and tolerance having changed over time, both for themselves individually but also for donor specialists as a collective. Most commonly, this was discussed in terms of increasing risk propensity and in relation to infectious disease transmission (e.g., hepatitis) where newer treatments have made transmission risk less of a concern. However, one participant shared that their experience had been the opposite, where risk aversion was perceived to have increased over time despite advancements in infectious disease treatments.

I can tell you definitely my risk aversion has changed over the last 5, 6 years. Probably actually over the last 3 years and that’s because of the change with all the hepatitis C treatment, the posttransplant management, the recipients are able to retrieve, from a BBV kind of perspective. (P3, Donation specialist coordinator)

And these decisions 5 years ago were very different to the previous 5 years. We’ve gone back to being a lot more risk averse, I guess. (P11, Transplant coordinator)

While very few participants explicitly acknowledged that decisions about donors and transplantation differed depending on individual “risk appetite” (P1, donation specialist medical), variations in risk propensity emerged during the hypothetical scenarios, in which participants were asked whether they would proceed or choose to exclude a hypothetical potential donor. Although many chose to proceed with the donation, there were some individuals who felt the risk was too great, highlighting variability in decision making irrespective of standardized information provision.

In many instances, hesitations and decisions of unsuitability were driven by the cumulative evaluation of multiple considerations. This held true even when guideline recommendations leaned toward proceeding with the potential donor to donation. The compounding risk of various factors often culminated as the “final straw” (P6, donation specialist medical) influencing the participant’s decisions to choose to exclude a (hypothetical) donor. In this context, donation specialists emphasized the importance of having access to as much medical information as possible to make informed decisions. They believed it was crucial to understand not only donor demographics and comorbidities but also the medical characteristics and circumstances surrounding the donor’s death. Gaps in information, such as the medical history of the donor, raised hesitations, as they were perceived to conceal underlying risks.

I guess we also would like to get a story about why or how they come to be a [potential] donor. You know what the sequence of events, up to the point of them passing away, or withdrawing from care. (P9, Donation specialist medical)

We still have concerns about patients that die under unexplained circumstances that could reflect they had some sort of genetic disease. (P8, Donation specialist medical)

However, in these scenarios, where hesitancies were often underpinned by (perceived) information gaps, participants also raised concerns about the quality and accuracy of information in patient’s medical history and/or that obtained from donors’ families. In some instances, this created a situation in which attempts to bridge information gaps still did not afford decisional clarity.

The past medical history that you might get might not necessarily be true and accurate. (P1, Donation specialist medical)

We don’t tend to trust the donor family history. I don’t, anyway, because . . . if you ask my . . . my immediate family, they wouldn’t know what I did in the last 48 hours, necessarily. (P10, Transplant coordinator)

Theme 3: The Role of Recipients and Their Families in Decision Making

Donor and recipient: Can you make a decision about one without the other?

Often when determining potential donor suitability, profiles were assessed without a particular recipient in mind. However, determining donor suitability in isolation was perceived as particularly challenging and problematic by participants in this study.

People think that transplantation has to be completely separate to donation. . . . It’s not necessary. It actually hampers the whole process by doing that. (P10, Transplant coordinator)

Donation specialists stressed the importance of considering both donor and potential recipient profiles in tandem; knowledge of the potential recipient’s situation significantly influenced the decision-making process. Some participants believed that had they known more about who the organ was going to they would be better placed to make decisions and less risk averse. This was particularly the case for a donor profile that was higher risk due to biovigilance concerns and compounded comorbidities. For kidney donation, for example, donation specialists often prioritized transplantation over prolonged dialysis, viewing it as a preferable option for recipients in terms of QoL, particularly for sicker or more complex patients for whom they were more likely to accept increased risk or suboptimal organs.

And so, you know, my bar is definitely lower for older person and also for people [recipients] who are highly sensitized. (P12, Donation specialist medical)

If they’re struggling on dialysis, as they probably want to get off dialysis if they can, I think it’s reasonable to take some risk. (P9, Donation specialist medical)

Accounting for potential recipients was not without its challenges. When weighing potential benefits and harms, for example, concerns about making the “wrong” decisions for potential recipients were always front of mind.

I guess we’re all in the same boat is that you look ahead and are concerned that . . . they may wait another 10-15 years to get another transplant if we make the wrong decision at that time. (P11, Transplant coordinator)

Engaging recipient patients and families

There was often a preference from clinicians to be able to talk to potential recipient patients early on to understand their propensity for risk and whether they were willing to take a kidney that had biovigilance concerns but would mean that they would no longer need to remain on dialysis. Donation specialists also reflected on the importance of families in the donation process and the role recipients’ families play in decision making.

Because for them, the risk of getting cancer as opposed to dying . . . we want to give them that opportunity to make that decision. (P5, Donation specialist coordinator)

However, participants’ narratives were marked with some reticence as they reflected on the challenges associated with engaging patients and their families. Some participants, for example, expressed frustration in regard to patients’ attitudes to organs from increased (biovigilance) risk donors, particularly when they were experiencing very poor QoL on dialysis.

You know, many people that I know on dialysis say that they would rather be dead than remain on dialysis so that’s why I’m frustrated by some people’s attitudes to accepting an organ. (P6, Donation specialist medical)

The lower risk propensity of patients and/or their families was often linked by donation specialists to their level of “health education,” with some expressing their view that “if they had a bit more health education, then they’ll be more open” (P7, donation specialist coordinator). Language and literacy barriers were also noted. In such cases, the importance of the family in decision making was heightened.

You’ll need to speak to her son or stuff like that. (P10, Transplant coordinator)

Although one participant acknowledged that “we always want to try and make a transplant happen, no matter what, so we would never sort of not offer it based on the fact that explaining to them might be difficult” (P10, transplant coordinator), another shared a recent example in which language barriers and time pressures conflated in the context of an increased (biovigilance) risk organ, which resulted in the organ not being offered.

Language and literacy play [in]to any of the decisions. . . . Because I had a case recently where I had a Hep C positive kidney and we didn’t offer it to someone because they didn’t speak English and their family were overseas and we knew we’d have struggled in the middle of the night actually. (P12, Donation specialist medical)

Discussion

This qualitative study sought to identify and understand the factors that Australian donation specialists consider when appraising a potential organ donor and how they balance the risk and benefits when determining donor medical suitability. Our findings suggest that deceased donor medical suitability was determined by a complex interplay of clinical practice guidelines, guidance from colleagues, and personal risk propensity, with variability in decision making irrespective of standardized information provision. Decisions to forego a potential donor were often driven by compounding risks, accentuated in the context of missing data and incomplete medical histories. Donation specialists stressed the importance of considering both donor and recipient profiles in tandem and including recipients and/or their families in decision making. However, narratives were marked by “frustration” with patients’ risk propensity and challenges with communication under time pressure.

Our findings are consistent with, and build on, international research with clinicians across medical specialties and outside of donation practice, which consistently show variations in both risk propensity and the use of strategies for making risk decisions. Such variations have been attributed to differences in clinicians’ age, years of practice, and role.^19,20 Several studies, for example, report more senior clinicians using clinical guidelines as a filter or tool to organize information for routine cases but not for complex cases or “gray zones,” where multiple influencing factors such as patient demographics, multimorbidity, and insufficient information increase uncertainty.^19,21–23 Here, clinicians rely more on their own experience¹⁹ or seek collaborative decision making,^19,23 as identified in the current study. In this context—and others—it has been widely recognized that communication of risk with patients is difficult to achieve well.^24,25

Decision support tools and risk calculators are widely used in the medical field to aid both clinicians and patients in making consistent evidence-based decisions.²⁶ The literature recommends that probabilities and outcomes displayed in such tools are presented in an unbiased way to allow the individuals to make informed decisions.²⁷ The findings of the current study also suggest that additional support for decision making in the context of cumulative risk factors and variable information quality (e.g., from the patient’s medical history and/or that obtained from families) would also be useful, in addition to tools that consider donor and recipient profiles in tandem and support communication with recipients and their families.

There are strengths and limitations of this study. One strength is that it captures a variety of experiences and perspectives of individuals with different roles within the donation process, including donor specialist coordinators, donation specialist medical staff (nephrologists, hepatologists, surgeons), and transplant coordinators. We also interviewed clinicians with a diverse range of clinical expertise, which broadened the scope of opinions and experiences we received. Hypothetical scenarios used in the interviews—created to show the complexities of the decisions that clinicians are routinely required to make—were developed iteratively by a team of clinician researchers, and the sample size was determined by the concept of information power. While most participants had more than 20 y of clinical experience, this reflects the objectives of the study to explore specialists’ decision making.

However, the generalizability of our findings is limited. Although NSW is the busiest and most administratively complex donation service in Australia, transplantation service delivery varies significantly across jurisdictions. Certain states have a single center providing all transplant services, while in other states, multiple units share the service provision and are all involved in appraising potential organ donors, greatly increasing administrative complexity.²⁸ Differences in transplant service organization across jurisdictions can result in varied decision making, influenced by differences in resources, expertise, and support services. For example, nephrologists in different regions of Australia vary in their likelihood to recommend a patient profile as a suitable recipient for transplantation.²⁹ An additional limitation is that our methodological approach enabled us to explore only conscious, deliberative decision making (i.e., the processes people say they use and the factors they say influence their decisions versus the [often unconscious] factors that influence decisions in practice). We cannot trust the results as valid measures of unconscious decision making and cannot ascertain from this study whether decisions made in real-world clinical settings would differ from those expressed in relation to the hypothetical scenarios presented.

Conclusion

Decision making for deceased potential donor medical suitability is multifaceted, with variability in decision making between clinicians driven by several factors. Although there is a recognized need to evaluate both donor and recipient profiles together, clinicians experience challenges engaging potential recipients and their families in the decision-making process, particularly under time pressure. Using decision support tools and involving potential recipients and families earlier in the donation process to elicit preferences and risk tolerance could address these barriers and help clinicians make informed decisions.

Supplemental Material

sj-docx-1-mpp-10.1177_23814683251386881 – Supplemental material for Understanding Factors Influencing Decision Making during Assessment of Potential Organ Donors: A Qualitative Study of Clinicians Assessing the Medical Suitability of Potential Donors

Supplemental material, sj-docx-1-mpp-10.1177_23814683251386881 for Understanding Factors Influencing Decision Making during Assessment of Potential Organ Donors: A Qualitative Study of Clinicians Assessing the Medical Suitability of Potential Donors by Danielle Marie Muscat, Pinika Patel, Rachel Davies, Rachel B. Cutting, Brenda M. Rosales, Shilpanjali Jesudason, Kirsten McCaffery, Kate R. Wyburn and Angela C. Webster in MDM Policy & Practice

Footnotes

Acknowledgements

We would like to thank the donation specialists who contributed to the content of this study. Angela C. Webster affirms that everyone who contributed significantly to the work is listed as an author. Data relating to this study are confidential and will not be made available publicly. For further information, please contact the corresponding author.

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Financial support for this study was provided by NHMRC Partnership grant 1171364. The funding agreement ensured the authors’ independence in designing the study, interpreting the data, writing, and publishing the report.

Ethical Considerations

Ethical approval was obtained through the University of Sydney Ethics Office (reference 2022/108).

Consent to Participate

Participants were fully informed, in writing, about the purpose of the study, questionnaires and time commitments, potential benefits, and risks. Participants signed a consent form that was approved by the University of Sydney Human Research Ethics Committee.

Consent for Publication

Informed consent for publication was provided by the participants. Obtained written consent is held within the University of Sydney secure Research Data Store with access granted only to those listed as investigators on the study.

ORCID iDs

Danielle Marie Muscat

Pinika Patel

Rachel B. Cutting

Brenda M. Rosales

Kirsten McCaffery

Kate R. Wyburn

Data Availability

Data relating to this study are confidential and will not be made available publicly.

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