Factors relating to consent for organ donation: prospective data on potential organ donors

bs_bs_banner Factors relating to consent for organ donation: prospective data on potential organ donors C. H. Marck, 1 S. L. Neate, 2 M. R. Skinner, 3 B. M. Dwyer, 4 B. B. Hickey, 5 R. D Costa, 6 T. J. Weiland 1 and G. A. Jelinek 1 1 Emergency Practice Innovation Centre, 2 Emergency Department and 5 Intensive Care Unit, St Vincent s Hospital Melbourne, 3 DonateLife Victoria, 6 Intensive Care Unit, Royal Melbourne Hospital, Melbourne, Victoria and 4 Organ and Tissue Authority, Canberra, Australian Capital Territory, Australia Key words brain death, circulatory death, consent, organ transplantation, prospective audit. Correspondence Claudia H. Marck, Emergency Practice Innovation Centre, St Vincent s Hospital Melbourne, PO Box 2900, 35 Victoria Parade, Fitzroy, Vic. 3065, Australia. Email: claudia.marck@svha.org.au Received 23 June 2014; accepted 28 September 2014. doi:10.1111/imj.12628 Abstract Background: Obtaining family consent to organ donation is a significant obstacle to improving further Australian deceased organ donation rates. Currently, neither the consent rates for donors eligible to donate after circulatory death, nor factors that influence decision to decline or consent to donation in general are known in Australia. Methods: This study at four university teaching hospitals in Melbourne, Victoria, examined consecutive patients where organ donation was discussed with the family Results: A total of 123 cases were identified; the family consent rate was 52.8%, and 34.1% proceeded to donation. Consent to donation was related to potential donor factors such as country of birth, cultural background in Australia, a non-religious or Christian background and registration on the Australian Organ Donor Register. Family-related factors included being English speaking and having knowledge of the deceased s wishes about organ donation. Family of donation after circulatory deatheligible donors were less likely to consent to donation than the family of donation after brain death-eligible donors, although not reaching statistical significance. Among consented potential donors, those eligible for donation after brain death and with a shorter length of stay were more likely to proceed to donating organs for transplantation. Conclusion: Despite a small sample size, these findings describe current consent and donation rates and associated factors and may assist in improving conversations about organ donation. Introduction Australia has experienced a recent increase in the rate of deceased organ donations. 1 Despite this increase, around 1500 Australians remain on organ transplantation waiting lists at any time. 2 With 1053 organ recipients in 2012 3 and 1122 in 2013, 1 the demand for organs for transplantation is perpetually unmet, resulting in people dying while on the waiting list every year. 4 In Australia, deceased organ donation can occur through two pathways. Traditionally, donation has occurred following brain death (donation after brain death (DBD)), but donation after circulatory death (DCD) is becoming increasingly frequent. DBD occurs following brain death and the deceased proceeds to donation with cardiorespiratory support. DCD occurs in Australia in a Funding: We thank St Vincent s Hospital Melbourne for funding this study. Conflict of interest: None. controlled setting, that is, following withdrawal of cardiorespiratory support (WCRS) and declaration of death occurs when the circulation ceases. Potential donors are defined as patients who are either confirmed to be or are likely to become brain dead (DBD pathway), or are thought likely to die within 90 min of WCRS (DCD pathway) and who appear medically suitable to donate organs. In Australia, the GIVE Clinical Trigger was introduced to increase the early recognition of potential donors, that is, those who were intubated and ventilated and were receiving end-of-life care. It is current Australian practice to seek consent from the next of kin, usually a family member or partner, hereafter termed family, to proceed with organ donation even if the person who has died has registered consent to donate on the Australian Organ Donor Register (AODR). Discussing donation with families and obtaining consent does not follow a standard protocol or path and will differ depending on the circumstances. Ideally, conversations occur in the intensive care unit. Most commonly, organ donation conversations for 40

Factors relating to consent for donation potential DBD donors will occur following brain death; however, in some cases, the clinician may decide to discuss donation around the time of brain death testing. For DCD, consent discussions must occur prior to WCRS, as donor evaluation and recipient matching must be complete and surgical teams must be ready to proceed when WCRS occurs. As DCD can occur only if death occurs within 90 min of WCRS, families of potential DCD donors must also be informed of the possibility that donation will not proceed if death does not occur within this time frame. Therefore, conversations regarding consent may differ significantly in timing and content for DBD and DCD. The timing of discussing donation may also be influenced by the clinicians perception of the readiness of the family to accept imminent death and to discuss what might happen after the patient has died. Families may also raise the topic of donation themselves at any point. Conversations regarding consent to donation are therefore extremely complex and varied. Family non-consent is thought to be one of the biggest obstacles to increasing further organ donation rates in Australia. 5 In 2013, 78% of a sample of 1900 Australians indicated a willingness to donate organs after their own death; 6 however, in both 2012 and 2013, the Australian Organ and Tissue Authority s (OTA) annual performance report shows only 61% of families gave consent when organ donation was requested. 1,3 The National Organ Donation Collaborative s 2009 report recommended a target family consent rate of 75% 7 and this aim has been adopted by the OTA. The current conversion rate (the rate at which potential donors proceed to organ retrieval) is around 45% for DBD and is unknown for DCD, with target rates of 70% for DBD and 50% for DCD. 3 Improving the rate of family consent is a key strategy for maximising organ donation rates in Australia. Understanding the factors that affect the consent decision is fundamental to improving Australia s organ donation rates. To date, there has been little evaluation of the factors associated with consent to organ donation in Australia. In particular, the influence of sociodemographic factors or pre-existing health characteristics of both the potential organ donor and their family have been unexplored. Even fewer data exist with respect to factors influencing non-consent to donation. It is important to recognise that non-consent may not be simply an absence of consent, but a purposeful statement of objection. International data suggest that family of potential donors who are young, male, white and have died from trauma are more likely to give consent for organ donation. 8 10 Alternatively, family of potential donors from the minority populations and with a medical (as opposed to traumatic) cause of brain death have been associated with nonconsent. 10 The family s knowledge of the potential donor s wish to donate organs is strongly associated with consent. 11,12 However, due to the absence of Australian data about factors that influence consent, public awareness campaigns promoting discussion of donation are currently informed by mostly North American and Spanish studies. It is important to know which factors affect consent decisions in the Australian setting so that these public awareness and education campaigns, as well as healthcare staff training and organ donation request models, can be designed specifically for the Australian context. This study, which is part of a larger mixed methods study, aimed to identify the factors associated with family consent or non-consent for organ donation. To our knowledge, this is the first study in Australia to assess factors associated with consent decisions that include both consenting and non-consenting family. Methods Data collection Prospective data on deceased donors and potential donors were collected from four sites between April 2012 and September 2013 with varying starting dates due to human research ethics committee (HREC) constraints. The primary purpose was to detect cases for interview in qualitative research on factors affecting the decision to donate organs. This enabled data from the whole pool of prospective consecutive potential donors to be gathered and analysed for the current study. At each site, a nurse or medical donation specialist (DS) collected and reviewed data of deceased patients to identify (potential) organ or tissue donors for the OTA s audit. The DS at the four participating sites collected similar health, demographic and other additional relevant characteristics about potential organ donors from the hospital database, typed notes in the medical file, hospital clerical data or directly from the treating clinician. A subsample of participants was subsequently invited for a qualitative interview; these results will be reported elsewhere. Approval from the HREC committees at the participating hospitals was obtained. Instruments The data collection tool was based on existing literature and further amended and developed by the research team including psychologists, researchers, four DS employed by the OTA and a Family Support Coordinator. In consultation with the relevant HREC, the tool was further amended. The data collection tool consisted of a password-protected document where research staff could 41

Marck et al. Table 1 Donor categories and definitions Donor category Potential donor Actual organ donor Intended donor Planned DCD donor Non-consent (organ donation declined/refusal) complete the following data items from the hospitals information systems, the data collected for the OTA s audit, as well as from interviews that were held in a subsample: date of birth; admitting hospital; date and time of hospital admission; date and time of death; gender; country of birth (COB); cultural background; religion; presenting complaint; location where potential donor status was identified; potential donation pathway (DCD or DBD); AODR status; outcome of potential donation; and whether the patient s family required a translator, whether they were aware of the patient s donation wish and whether they provided consent. Due to the varying origin of these data, there were no predetermined categories for variables such as cultural background or religion. Participants Data were collected on all potential donors who were considered medically suitable for organ donation at the time organ donation was discussed with the family, regardless of the outcome of the consent conversation or the donation. Participants were categorised according to definitions derived from the OTA audit 13 and World Health Organization 14 (Table 1). Data analysis Definition Patient who is medically suitable to donate organs and has the potential to do so either through donation after brain death (DBD) or donation after circulatory death (DCD). 13 Deceased (...) person from whom at least one solid organ or part of it has been recovered for the purpose of transplantation. 14 A person for whom the donation workup was initiated (...) but donation did not proceed. 13 A patient who was consented for DCD organ donation, irrespective of whether withdrawal of cardiorespiratory support or organ donation actually occurred. 13 The family declined organ donation or the family was not approached because it was known that the patient was opposed to organ donation, such as a documented refusal on the AODR. 13 If a planned DCD donor also fitted the Actual organ donor category, they were only classified in the latter category. This study did not include missed or unrealised potential donors where the family was not approached and organ donation was not considered. AODR, Australian Organ Donor Register. Data were exported to SPSS 22.0 (SPSS, Chicago, IL, USA) and characteristics of potential donors were compared for two outcome measures: (i) family consent; and (ii) whether those for whom consent was obtained proceeded to organ retrieval. We used independent samples median test for continuous variables without a normal distribution, and Chi-squared or Fisher s exact tests for categorical variables. Chi-squared results were only interpreted if there was an expected count of 5 in 80% of cells. For all inferential analyses, alpha was set at 0.05 and two-tailed tests of significance were used. Sample size This study recruited 100% of potential donors where family was consulted from participating hospitals during the study period. Sample size was determined by the desire to interview a subsample of cases meeting more stringent inclusion criteria (e.g. English speaking) in both the consent and non-consent arms of the associated qualitative study until saturation of themes was reached. This occurred when data on 123 potential organ donors were collected and recruitment was halted. Based on the sample obtained, post-hoc analysis revealed that there was sufficient power to detect differences in proportions for dichotomous variables that varied between 15% and 27%, depending on the proportion, when alpha was set at 0.05, with 80% power, and two-tailed tests were used. Results In total, 123 consecutive potential organ donors were identified for inclusion in the study, including 42 organ donors, 12 intended donors, 11 planned DCD donors and 58 non-consent potential donors (whose families declined consent for donation). The consent rate was 52.8% (65/123), and the conversion rate was 34.1% (42/123). The 42 organ donors, including 14 (33%) DCD donors, donated 65 kidneys, 27 livers (one for research), 22 pairs of lungs, 10 hearts (three of which were used for research and one was not used as there was no suitable recipient) and 5 pancreases. There were 124 solid organs transplanted, average 3.0 per donor, and all donors had one or more organs transplanted. In addition, 10 organ donors also donated tissues including eye, bone and/or skin tissues; and of those not able to donate solid organs, seven donated eyes or corneas. The median age at death was 58.5 years (46.8 67.6) and the median time between hospital admission and death was 66.0 h (28.4 120.0). Further demographic data are depicted in Table 2. The data included in the category not recorded were excluded from further bivariate analysis. Variables significantly related to consent were hospital, COB and cultural background (collapsed into three groups for the purpose of analyses). Families of potential donors from Australia 42

Factors relating to consent for donation Table 2 Demographic and donation-related data of potential organ donors Whole sample Consent for organ donation n % n/total n Hospital 1 21 17.1 11/21 2 50 40.7 20/50 3 17 13.8 9/17 4 35 28.5 25/35 Gender Female 53 43.1 28/53 Male 70 56.9 37/70 Country of birth Australia and New Zealand Australia 74 60.2 49/74 New Zealand 1 0.8 0/1 Europe Cyprus 1 0.8 0/1 Germany 1 0.8 1/1 Greece 4 3.3 2/4 Ireland 1 0.8 1/1 Italy 7 5.7 4/7 Macedonia 3 2.4 0/3 Malta 3 2.4 0/3 Netherlands 1 0.8 1/1 Poland 3 2.4 1/3 Serbia 1 0.8 0/1 Turkey 1 0.8 0/1 United Kingdom 5 4.1 4/5 Asia, Melanesia and Polynesia Cambodia 1 0.8 0/1 China 2 1.6 0/2 Fiji 1 0.8 0/1 Hong Kong 1 0.8 0/1 India 1 0.8 0/1 Iraq 1 0.8 0/1 Nepal 1 0.8 0/1 Philippines 3 2.4 0/3 Samoa 1 0.8 0/1 Singapore 1 0.8 0/1 Syria 1 0.8 1/1 Vietnam 1 0.8 0/1 Not recorded 2 1.6 1/2 Cultural background Australia or New Zealand 57 46.3 42/57 Europe 31 25.2 13/31 Asia, Melanesia and Polynesia 20 16.3 1/20 Not recorded 15 12.2 9/15 Religion Not religious Not religious or atheist 43 35.0 27/43 Catholic (Roman) Catholic 25 20.3 11/25 Assyrian Catholic Church 1 0.8 1/1 Other Christian 7th day Adventist 1 0.8 1/1 Anglican 5 4.1 4/5 Baptist 2 1.6 2/2 Christian 5 4.1 4/5 Church of England 3 2.4 3/3 Latter day saints 1 0.8 0/1 Lutheran 1 0.8 1/1 Pentecostal 1 0.8 1/1 Presbyterian 1 0.8 1/1 Salvation army 1 0.8 1/1 Greek Orthodox 5 4.1 2/5 Other Orthodox 3 2.4 0/3 Other Hindu 3 2.4 0/3 Buddhist 3 2.4 0/3 Jewish 1 0.8 1/1 Muslim 2 1.6 0/2 Not recorded 16 13.0 5/16 DCD or DBD pathway DCD 76 61.8 35/76 DBD 47 38.2 30/47 Presenting complaint Cerebrovascular 65 52.8 30/65 Trauma 11 8.9 6/11 Hypoxia/anoxia 37 30.1 21/37 Other 10 8.1 8/10 Location where potential donor status identified ICU 105 85.4 54/105 ED 17 13.8 11/17 Other 1 0.8 0/1 Family speaks English No or very limited 16 13.0 2/16 Yes 107 87.0 63/107 Australian Organ Donor Register record Yes (all consent) 11 8.9 11/11 Not registered on AODR 87 70.7 49/87 Not checked/not recorded 25 20.3 5/25 Family aware of patient s wish No 47 38.2 16/47 Yes 58 47.2 41/58 Not recorded 18 14.6 8/18 Percentages are adjusted for missing data. AODR, Australian Organ Donor Register; DBD, donation after brain death; DCD, donation after circulatory death; ED, emergency department; ICU, intensive care unit. 43

Marck et al. Table 3 Factors related to consent Consent Non-consent P-value n % n % Hospital 1 11 52.4 10 47.6 (P = 0.043) 2 20 40.0 30 60.0 3 9 52.9 8 47.1 4 25 71.4 10 28.6 Country of birth Australia or New Zealand 49 65.3 26 34.7 (P < 0.001) Europe 14 45.2 17 54.8 Asia, Melanesia and Polynesia 1 6.7 14 93.3 Cultural background Australia or New Zealand 42 73.7 15 26.3 (P < 0.001) Europe 18 41.9 13 58.1 Asia, Melanesia and Polynesia 1 5.0 19 95.0 Religion Not religious 27 62.8 16 37.2 (P = 0.011) Catholic 12 46.2 14 53.8 Christian other than Catholic 20 69.0 9 31.0 Other religions 1 11.1 8 88.9 DCD or DBD pathway DCD 35 46.1 41 53.9 (P = 0.065) DBD 30 63.8 17 36.2 Family speaks English None or limited 2 12.5 14 87.5 (P = 0.001) Yes 63 58.9 44 41.1 Family aware of patient s wish No 16 34.0 31 66.0 (P < 0.001) Yes 41 70.7 17 29.3 Registered on the organ donor register No 49 56.3 38 43.7 (P < 0.001) Yes 11 100.0 0 0 Unknown/not checked 5 20.0 20 80.0 Significantly less often in the consenting group. Significantly more often in the consenting group Not statistically significant (= 0.065). DBD = donation after brain death; DCD = donation after circulatory death. and New Zealand were more likely to consent to donation, whereas families of those born in Asia, Melanesia and Polynesia were less likely to consent. Data relating to religion (collapsed into four groups) showed that family of potential donors who affiliated with a religion other than Christian were less likely to consent. Other factors significantly related to consent were whether the family spoke English (considered non-english speaking if requiring a translator); whether the family were aware of the patient s wish regarding donation; and whether the patient was registered on the AODR (Table 3). Although not statistically significant, donation pathway showed a trend with families of those eligible for the DBD pathway more likely to consent compared with those eligible for DCD pathway. Age, time spent in hospital, gender, presenting complaint and location where the potential donor was identified were not significantly related to consent (results not shown). Overall, potential DBD donors spent more time in hospital compared with potential DCD donors (medians of 80.5 h vs 42.7 h; P = 0.012) and were more likely to proceed to donation compared with potential DCD donors (59.6% vs 18.4%; P < 0.001). Additional analyses on those for whom consent was obtained (n = 65) showed that none of the above factors was significantly related to proceeding to organ retrieval, except for donation pathway (DCD 40% vs DBD 93.3%, P < 0.001) and time spent in hospital; those who proceeded to donation spent a median of 46.9 h in hospital, whereas those not proceeding to donate spent a median of 138.9 h in hospital (P = 0.007). Discussion This is the first study to report demographic and donation-related data of potential organ donors and to draw comparisons between consenting and nonconsenting family in Australia. The consent rate of 53% in this study was lower than the national consent rate of 61% (2012 and 2013) published by the OTA. 1,3 This difference may be due to variations in patient cohorts. This study included all potential donors including those with confirmed or suspected brain death and imminent brain death (those who were thought likely to progress to brain death had physiological supports been maintained) as well as potential DCD donors. The annual performance report published by OTA included potential donors with confirmed or suspected brain death, but does not report on potential 44

Factors relating to consent for donation donors with imminent brain death, or potential DCD donors who are thought to have lower conversion rates. To determine consent rates, the current study included all potential DCD and DBD donors considered medically suitable for donation at the time of the family s decision, even if they were later considered medically unsuitable. Including potential DCD donors in consent rate calculations resembles the way family consent rate is defined and calculated in some other countries; however, imminent or unconfirmed brain dead potential donors are not included universally when reporting consent rates, and practices regarding brain death testing differ between countries. 15,16 Recently, there have been some calls for a standard method of assessing the potential donor pool and consent rates; however, these have not yet been adopted. 17,18 As the OTA does not report consent rates of potential DCD donors, these rates are not well known in Australia. The conversion rate of 34% (18% for DCD and 60% for DBD) was also lower than OTA targets. Slightly higher than reported conversion rates of 54% and 45% in 2012 3 and 2013, 1 the conversion rate for potential DBD donors was 60%. This is again likely due to different patient inclusion, as this study did not include missed potential donors. National data on missed potential donors varied between 3% and 10% in 2012 and 2013; 1,3 the conversion rate, therefore, could have been lower if missed potential donors had been included in this study. The conversion rate for potential DCD donors was much lower at 18%, similar to other countries. 15 This may reflect the complexities of the DCD donation process, limited time frames for organ retrieval and difficulties in predicting outcomes. Also, as DCD pathways in some of the hospitals involved were introduced very recently, not all staff may have been fully familiar with the protocols. Knowledge of the wishes of the deceased was highly related to consent in our study. This finding is consistent with US literature, which identifies such knowledge as one of the main predictors for family consent. 9,11,12,19 Promoting family conversation about donation and knowing a loved one s wishes are key components of the OTA s public awareness campaign and would seem, in the Australian context, to be of great relevance. Family were aware of the deceased s wish regarding organ donation in less than 50% of cases in our study, consistent with OTA s own research. 6 Registration on the AODR is also highly related to consent, again consistent with the US literature. National data are unavailable, but a recent Victorian audit reported that the AODR was only checked in 50% of cases, 20 which contrasts with the 80% found in our study, although in both studies, it is not known whether the AODR was checked before consent was requested. If the AODR is not checked before the conversation with the family, it is regular practice to check the AODR for potential donors for whom verbal consent has been obtained, but not those for whom consent was refused, which may explain the association between consent and checking the AODR. 20 In both samples, around 10% of potential donors were registered, whereas it is estimated that around a third of the population over 16 years of age is now registered on the AODR. 21 Among non-english-speaking family, the consent rate was very low at 12.5%. This has significance for those having consent conversations with families from non- English-speaking backgrounds and for those providing education in the sector. Discussions about organ donation are often very sensitive given the circumstances and require explanations of complex medical issues. Verbal and non-verbal communication including perceived compassion, sensitivity and care provided to the patient and family are factors known to influence donation decisions, 19,22,23 and communication is more challenging across language and cultural barriers. 24 Our own experience suggests that barriers to clear communication with non-english-speaking family include the (after-hours) availability of interpreters to participate in often lengthy discussions, continuity of care, and trust by both the family and the clinician in the interpreter. However challenging, it is vital that these families are provided with the opportunity to be fully informed of the opportunity to donate their organs. 25 The significant association of COB with consent rate, with family of potential donors born in Australia or New Zealand more likely to consent compared with those born in Asia, confirms findings in US and UK studies that the minority groups are less likely to consent. 10,26 Although the numbers in the religion subgroups were small, it is noteworthy that the consent rate was lower among those of religious backgrounds other than Christian, consistent with existing literature showing minorities are less likely to consent. 27 For this variable, we largely relied on data collected by hospital clerical staff and were not able to assess for strength of religious beliefs, but this has been shown to influence willingness to donate among the general public, 27 and future studies may be able to assess this further. The variables COB, cultural background, religion and whether the family spoke English are likely inter-related, and it is therefore difficult to distinguish which has the strongest predictive value, as some of the groups in our sample were small. Recent improvements to the methods and tools used to collect national data by the OTA may lead to a database with a larger sample size so that analyses may elucidate this further. There was a significant difference in consent rate between hospitals, and further research is needed to 45

Marck et al. assess whether request models may explain these differences. Of note, 13.8% of all potential donors were identified and referred from ED indicating that this is an important site for donor recognition and referral. 28 There was a trend for families of those patients eligible for the DBD pathway to be more likely to consent to donation, and proceed to organ retrieval, in line with data from the UK. The reasons for this may be hypothesised to include the increased certainty associated with brain death determination and the knowledge that following consent, donation is more likely to proceed in DBD; however, there is currently a lack of literature regarding this. Among the subgroup for whom consent was obtained, those potential donors proceeding to donation had spent less time in hospital between admission and death compared with those not proceeding to donation. This may be due to a proportion of planned DCD patients who did not die in the timeframe required for donation to proceed and therefore had a longer length of stay; however, length of stay could also be associated with a range of other variables such as the underlying illness or treatment plan. A US study has previously indicated that longer length of stay increases the likelihood of medical complications prohibiting donation. 28 However, further research needs to be undertaken to assess this in the Australian setting. Age, time spent in hospital, gender, presenting complaint and location (ED or ICU) where the patient was identified as a potential donor were not significantly related to consent. Some of these factors have previously been shown to affect consent or conversion rates. However, our sample size is small and may have been underpowered to detect smaller differences between groups. In an attempt to verify that our sample was similar to the national sample, a comparison was made of demographic characteristics between the organ donors in our study and organ donors nationally recorded in the annual Australian and New Zealand Organ Donation Registry (ANZOD) 2012 Report. 29 Our sample was older overall and included more non-religious donors (not taking into account the 50% in the unknown category in the ANZOD report), but in terms of gender and COB, it was largely comparable. National data regarding potential donors not proceeding to donation are not available. Our sample represented potential organ donors mostly from Victoria, including from rural areas, who died in innercity hospitals in Melbourne, which may reduce the generalisability but does not negate the importance of these results. Conclusion Our data have the potential to shed further light on the factors influencing consent. This should guide further research into consent and non-consent to organ donation among families of potential donors in Australia and further inform health professionals responsible for donation-related processes and conversations with families and those involved in community education, potentially improving consent rates. Acknowledgements We acknowledge Ms Elizabeth Skewes and Ms Jacinta Schlitz from the intensive care unit, St Vincent s Hospital Melbourne, Dr Sam Radford, Ms Leanne McEvoy, Ms Kate Tozer and Ms Louise Bourke from the intensive care unit of Austin Hospital and Dr Forbes McGain from Western Health for assisting with data collection, and Dr Helen Opdam from the Organ and Tissue Authority for her advice regarding study design. References 1 Australian Organ and Tissue Authority. Performance report 2013. 2014. 2 Australia and New Zealand Organ Donation Registry. 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