Research ArticleResearch

Family and emergency physicians’ knowledge and attitudes toward organ donation and deemed consent

Human Organ and Tissue Donation Act in Nova Scotia

Robin Urquhart, Nelofar Kureshi, Jade Dirk, Matthew Weiss and Stephen Beed
Canadian Family Physician January 2024; 70 (1) e20-e27; DOI: https://doi.org/10.46747/cfp.7001e20

Abstract

Objective To understand Nova Scotian family physicians’ and emergency department (ED) physicians’ knowledge of, attitudes about, and experience with organ donation and transplantation in the context of the Human Organ and Tissue Donation Act (HOTDA).

Design An electronic, self-administered survey.

Setting Nova Scotia.

Participants All family physicians and ED physicians practising in Nova Scotia.

Main outcome measures Demographic characteristics, experience with organ donation and transplantation, knowledge about organ donation and HOTDA, attitudes toward organ donation and HOTDA, and opportunities for and barriers to the implementation of the HOTDA in clinical practice. Survey results were analyzed using descriptive statistics.

Results Overall, 211 family physicians and 73 ED physicians responded to the survey. Most respondents had favourable attitudes around organ donation and most supported a deemed consent model. Nearly three-quarters of family physicians indicated they have a conversation around organ donation only if it is initiated by the patient. In the ED setting, the most common barriers to organ donation and deemed consent were lack of familiarity with the organ donation referral process, refusal of permission from families, and unknown wishes of the deceased.

Conclusion Family physicians and ED physicians had positive attitudes toward organ donation, including high support for a deemed consent model. However, specific knowledge gaps and training topics were identified that should be addressed within the context of this model.

Although Nova Scotia has had a robust history of organ and tissue donation, in recent years deceased donation rates have stagnated while other provinces have reported considerable increases in donation rates as their respective governments have invested financial resources into organ donation programs.1 Owing to this stagnation, the Nova Scotia government passed modifications to its Human Organ and Tissue Donation Act (HOTDA) in April 2019 to update the legal framework around donation and include a deemed consent (or opt-out) model for organ and tissue donation—the first jurisdiction in North America to do so.2 Once HOTDA was implemented on January 18, 2021, all adult Nova Scotians were considered to have consented to deceased organ donation unless they had explicitly opted out.

Although jurisdictions with deemed consent models are among the highest-performing donation systems worldwide,3-5 the impact and effectiveness of the deemed consent system is debatable as it is typically introduced as part of larger health system reforms and can have limited impact without the aid of additional infrastructure (eg, established pathways for neurologic death) and initiatives to raise awareness of the new law and processes to support its implementation. From a physician standpoint, increasing communication about organ donation with patients and families and receiving training on donor identification and management are other components that can increase donation and promote a broader culture of donation.6,7 Outside of the intensive care unit, both family physicians and emergency department (ED) physicians have critical roles to play in promoting and increasing deceased organ donation. In 2020, given the impending legislative changes, we sought to understand family physicians’ and ED physicians’ knowledge of organ donation and transplantation, professional education about and experiences with organ donors and recipients, attitudes toward organ donation and deemed consent, and perceived barriers to implementing a legislated deemed consent approach in Nova Scotia.

METHODS

Setting and study population

Nova Scotia Health Authority is responsible for the delivery of all health care services in Nova Scotia except for children and youth services and some women’s services. Health care is provided at more than 45 facilities throughout the province and services are organized across 4 geographic areas (Western Zone, Northern Zone, Eastern Zone, and Central Zone).

We invited family physicians and ED physicians employed in all 4 zones to participate in a cross-sectional, self-administered survey. These physician groups were selected because of their involvement in organ and tissue donation systems. It is important to note that many family physicians in Nova Scotia work in EDs, particularly in rural regions.

Survey development and administration

Survey questions were based on previous studies of organ and tissue donation8-13 and expert opinion from a co-author (S.B.). The Nova Scotia Health Research Ethics Board provided approval to conduct the study and informed consent was obtained from all participants.

The survey was categorized into 5 sections: demographic characteristics; experience with organ donation and transplantation; knowledge about organ donation and HOTDA; attitudes toward organ donation and HOTDA; and opportunities for and barriers to the implementation of the HOTDA in clinical practice (Appendix 1, available from CFPlus*). While some questions were the same for both physician groups (eg, attitudes around organ donation and HOTDA), some questions differed depending on the physician’s role in organ donation processes (eg, barriers to the implementation of HOTDA in practice).

The survey was electronic and administered using REDCap (Research Electronic Data Capture). A survey invitation and link were sent via email to primary care or emergency medicine Nova Scotia Health Authority programs. The email provided participants with a brief introduction to the survey. At the start of the survey, before data were collected, electronic consent was obtained from all participants. To ensure that respondents met the inclusion criteria (ie, currently practising as a family physician or ED physician in the province of Nova Scotia), a screening section confirmed eligibility for the study. Each survey was identified by a unique online identifier and answers were collected anonymously. Two reminder emails were sent at 2-week intervals to those who had not completed the survey. Respondents had the option of entering a prize draw at the end of the survey by providing their name and email. The survey remained open between July 6, 2020, and August 31, 2020.

Data analysis

Data were primarily analyzed using descriptive statistics. Where possible, variables were transformed for ease of interpretation in the following ways: dichotomizing agreement scales; collapsing response categories where responses totalled less than 5% of the sample into adjacent categories; and dropping the “other” or “neutral” response categories. A Pearson Embedded Image2 test was used to test for statistical differences between 2 categorical variables. Statistical analysis of survey data was carried out using SPSS, version 26.

RESULTS

Overall, 211 family physicians and 73 ED physicians provided consent to begin the survey; of those, 18% and 31%, respectively, had incomplete responses. Incomplete surveys included those in which not all sections were submitted. Among family physicians, 41.5% were older than 55 years of age and most were female (61.4%). Most of the participating family physicians had more than 15 years of experience (61.9%). Among ED physicians, 40.0% were between 45 and 55 years of age, and most within this age group were male (60.0%). Many participating ED physicians had more than 15 years of experience (63.3%). Fewer than half of all respondents had received training for donation-related issues (41.2% of family physicians; 45.3% of ED physicians). Table 1 presents respondent demographic characteristics.

View this table:
Table 1.

Demographic characteristics of participating family physicians and emergency department physicians

Family physicians

Table 2 presents respondents’ personal and professional experience with organ donation and transplantation. Nearly one-fifth of the family physicians responding to this question (19.7%) stated that either they or someone close to them had been an organ donor; fewer (13.3%) reported that they or someone close to them had been an organ recipient. Most family physicians (71.1%) had cared for a potential organ donor in their professional practice, and most (80.9%) had cared for an organ transplant recipient.

View this table:
Table 2.

Experience with organ donation and transplantation

When asked if they discussed organ donation during end-of-life discussions, nearly three-quarters of all respondents (72.6%) said they would have a conversation around organ donation only when the patient initiated it. Most reported that no patients had approached them about organ donation in the past year (56.7%), whereas 38.4% said between 1 and 5 patients had broached the subject with them. Approximately half (52%) agreed that organ donation should be discussed yearly with patients. When asked specific knowledge-based questions, nearly two-thirds of family physicians (64.9%) were strongly confident or somewhat confident in their understanding of donation after neurologic determination of death and three-quarters (75.6%) were strongly confident or somewhat confident in their understanding of donation after determination of cardiocirculatory death.

Table 3 presents respondents’ attitudes toward organ donation and the legislative change. Most family physicians supported or strongly supported organ donation and had signed an organ donation card to donate their organs or tissues or both after death. Moreover, 83.9% supported or strongly supported HOTDA. Of those who supported HOTDA, 80.6% thought that deemed consent would increase organ donation rates in Nova Scotia, and 16.4% believed deemed consent would make it easier to start a conversation about organ donation. Of the 11.8% who opposed or strongly opposed the legislation, most (52.6%) felt that deemed consent was a violation of an individual’s rights.

View this table:
Table 3.

Attitudes toward organ donation

Emergency physicians

Similar to family physicians, nearly one-fifth (19.0%) of ED physicians indicated that either they or someone close to them had been an organ donor; fewer respondents (17.2%) reported that they or someone close to them had been an organ recipient (Table 2). Most (82.8%) had cared for a potential organ donor in their professional practice. Similarly, most (98.3%) had cared for an organ transplant recipient.

In the past year, 43.4% of ED physicians had identified 1 or 2 potential organ donors in the ED setting, with nearly one-third (32.1%) not identifying any. Only 35.8% had made 1 or 2 organ donor referrals in the past year. Most ED physicians were aware of how to contact the donor coordinator (84.9%). When asked about the role of the donor coordinator, most (58.1%) were aware that donor assessment and management were within the scope of the donor coordinator’s professional responsibilities. Emergency department physicians recognized other coordinator roles, including identifying donors (41.9%), approaching families (41.9%), and obtaining informed consent (43.2%).

When asked specific knowledge-based questions, most ED physicians (62.3%) did not know the number of patients on the transplant wait list. Only 13.2% were aware that 150 to 200 patients are awaiting a transplant in Nova Scotia.14 Half (50.9%) did not know the typical delay in organ procurement after neurologic determination of death, with only 3.8% correctly identifying the delay as 19 to 24 hours. When asked about contraindications to organ donation, 64.9% of ED physicians selected the correct responses. The most common incorrect response was a history of intravenous drug abuse, which 23.0% selected.

Nearly all ED physicians (96.1%) supported or strongly supported HOTDA (Table 3). Of those who supported HOTDA, 83.7% thought that deemed consent would increase organ donation rates in Nova Scotia, and 10.2% believed deemed consent would make it easier to start a conversation about organ donation. Most (86.3%) supported or strongly supported mandatory referral under HOTDA.

Emergency department physicians identified numerous barriers to organ donation and implementation of HOTDA (Table 4). Lack of familiarity with the organ donation referral process (56.8%), refusal of permission from families (51.4%), unknown wishes of the deceased (43.2%), and lack of time to discuss donation with the patient’s family (43.2%) were the 4 most common barriers identified. Most agreed that identification of potential donors (63.5%) and contacting the on-call organ and tissue coordinator (62.2%) were part of their professional responsibilities. Emergency department physicians identified donor identification (60.8%), clinical management of donors (52.7%), and coordination of donation process (44.6%) as the 3 most important training topics (Table 5).

View this table:
Table 4.

Barriers to organ donation and deemed consent from the perspective of emergency department physicians: Respondents were asked to check all that apply.

View this table:
Table 5.

Training topics as identified by emergency department physicians: Respondents were asked to check all that apply.

DISCUSSION

This study presents family physicians’ and ED physicians’ attitudes about, knowledge of, and experiences with organ donation and transplantation in the context of a legislated deemed consent model. We found high support for organ donation among respondents, with most having cared for potential organ donors and transplant recipients. There was also high support for a deemed consent model among both physician groups, although support was higher among ED physicians compared with family physicians. Less than half of respondents had any form of organ donation–related training, and knowledge of local organ donation processes and practices was lacking. Collectively, these findings provide important data to understand physician attitudes and experiences in the context of an impending deemed consent model, and should be used to inform educational initiatives for both family physicians and ED physicians. Specifically, they demonstrate enthusiasm for a deemed consent approach, but also a need for education and training that is targeted toward specific knowledge gaps.

We surveyed 2 groups of physicians, both of whom play key roles in organ donation programs. From an ED perspective, physicians are critical personnel in terms of the identification, referral, and management of potential donors. At the front line of trauma care, these physicians need to accurately identify prospective donors, promptly refer prospective donors to organ donation coordinators or programs, and physiologically support prospective donors to provide the time needed to initiate donation. The experience of other jurisdictions has highlighted the necessity of including ED staff in the organ donation process.3,15 In the United Kingdom, for example, regional chart audits have suggested that the ED is a source of missed donation opportunities15 and could conceivably be improved with education. In this study, less than half of ED physicians had ever received training in organ donation–related issues, and a lack of familiarity with the organ donation referral process was noted as the most common barrier. The 3 educational topics of greatest interest were donor identification, clinical management of donors, and coordination of the donation process. Other studies have found that lack of familiarity with the referral process was the most common barrier to organ and tissue donation among Canadian ED staff.16 Educational initiatives in the ED have been shown to increase the timeliness of referral rates and tissue donation rates.6 A recent study of Canadian intensive care unit and ED physicians and nurses found that ED physicians rated the importance of key competencies in organ donation much lower than did the other groups and rated their comfort level with the key competencies as very low.17 These findings highlight a clear target for educational initiatives.

Although organ donation and transplantation are hospital-based activities, family physicians can also play an important role in organ donation. More than 3 decades ago, Walker and McGrath outlined the role of family physicians in organ donation in Canada. This role included promoting organ donation with patients (ie, raising awareness) and supporting families when they were asked to donate their loved one’s organs.18 The long-standing relationship between family physicians, patients, and their families allows family physicians to be more attuned to a patient’s individual values and preferences, and therefore better situated to engage in shared decision making with patients (upstream conversations) or with families (in-the-moment decisions). In our study, family physicians had favourable attitudes around organ donation and a deemed consent model; however, most stated they only discuss organ donation if a patient initiated the conversation. Only half agreed that organ donation should be discussed yearly with patients. The relatively low rates of discussion around organ donation have been noted elsewhere.19,20 For example, a study from Ireland found that fewer than 5% of general practitioners ever raised donation with patients, and only one-third felt they had enough knowledge to discuss organ donation.19 This reluctance represents a missed opportunity, as research has shown that family physicians can increase consent rates for organ donation by up to 34% through a brief verbal discussion.7 In the context of deemed consent, family physicians can help educate patients about organ donation, alleviating their fears and correcting misconceptions. Moreover, even under a deemed consent model, families and substitute decision makers will be asked about a patient’s final wishes and therefore still play an important role in terms of consent for organ donation. Initiating early conversations about organ donation (eg, during advance care planning discussions) can ensure that families understand the explicit wishes of a patient and have certainty when making such decisions under emotionally charged circumstances.

Limitations

This study has several limitations. As with any survey study, it is susceptible to non-response bias, meaning that respondents might have had greater interest and experience in organ donation than non-responders, and therefore have more positive attitudes toward the topic. Moreover, recruitment relied on survey invitations and links being sent by email through the physicians’ respective health authority departments. More targeted invitations might have yielded additional responses. As a result, we are also unable to compute accurate response rates due to not knowing how many physicians actually received the survey invitation (ie, we do not have a denominator). Despite these limitations, this study provides novel findings with respect to family physicians’ and ED physicians’ attitudes around deemed consent legislation and the training and related supports required as this new legislation is rolled out in Nova Scotia.

Conclusion

We found that family physicians and ED physicians had positive attitudes toward organ donation, including high support for a deemed consent model. However, it also revealed gaps in knowledge and identified barriers to organ donation and deemed consent in the ED setting, indicating that education and training is needed as HOTDA is being implemented. The findings of this study should inform educational initiatives in Nova Scotia and elsewhere to optimize organ donation processes and outcomes.

Notes

Editor’s key points

  • ▸ On January 18, 2021, Nova Scotia implemented a deemed consent (opt-out) model for organ and tissue donation, the first jurisdiction in North America to do so.

  • ▸ Research has shown that family physicians can increase consent rates for organ donation through brief verbal discussion with patients and their families. However, although most of the respondents in this study supported the deemed consent model and viewed organ donation favourably, they also reported a reluctance to initiate conversations around organ donation with patients.

  • ▸ The survey also identified gaps in knowledge and barriers to organ donation and deemed consent in the emergency department setting. The study points to the need for training and support for family physicians and emergency department physicians within the context of this legislation.

Points de repère du rédacteur

  • ▸ Le 18 janvier 2021, la Nouvelle-Écosse mettait en vigueur le modèle du consentement présumé (choix de refus) au don d’organes et de tissus humains, devenant la première instance à le faire en Amérique du Nord.

  • ▸ Des recherches ont fait valoir que les médecins de famille peuvent faire croître les taux de consentement au don d’organes par de brèves discussions verbales avec les patients et leur famille. Par ailleurs, même si la plupart des répondants dans cette étude étaient d’accord avec le modèle du consentement présumé et considéraient le don d’organes d’un œil favorable, ils ont aussi signalé être hésitants à amorcer une conversation sur le don d’organes avec les patients.

  • ▸ Ce sondage a aussi permis de cerner des lacunes dans les connaissances, de même que des obstacles au don d’organes et au consentement présumé dans le milieu des départements d’urgence. L’étude met en évidence la nécessité d’une formation et d’un soutien pour les médecins de famille et les urgentologues dans le contexte de cette loi.

Footnotes

  • ↵* Appendix 1 is available from https://www.cfp.ca. Go to the full text of the article online and click on the CFPlus tab.

  • Contributors

    All authors contributed to conceptualizing and designing the study; to collecting, analyzing, and interpreting the data; and to preparing the manuscript for submission.

  • Competing interests

    None declared

  • This article has been peer reviewed.

  • Cet article a fait l’objet d’une révision par des pairs.

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Family and emergency physicians’ knowledge and attitudes toward organ donation and deemed consent
Robin Urquhart, Nelofar Kureshi, Jade Dirk, Matthew Weiss, Stephen Beed
Canadian Family Physician Jan 2024, 70 (1) e20-e27; DOI: 10.46747/cfp.7001e20
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