Solid organ transplantation not only improves the length and quality of life of recipients but also is an effective use of limited health care resources.1 However, donation rates in the United Kingdom compare poorly compared with other European and North American countries.2 In 2008, the Organ Donor Taskforce made a series of recommendations, which, they argued, would increase the deceased-donor rate in the United Kingdom by 50% in 5 years.3 These changes were implemented, the target was achieved, and donation rates continue to increase.4 However, the current UK deceased-donor rate of 21 per million people still compares unfavorably with rates more than 30 per million people in countries such as Spain, Portugal, and Slovenia.5 The welcome increase in deceased donation has resulted in an increase in overall transplants (up by 30%), but the mortality of those awaiting heart, lung, or liver transplant still exceeds 15%, and further improvements are necessary to continue to reduce morbidity and mortality.
The increase in UK donation rates has been caused by many factors, including increased use of donors after circulatory death, more effective identification and referral of potential donors through improved interspecialty collaboration, effective use of specialist nurses in organ donation, and more efficient use of donor organs.4 In contrast, rates of consent (or authorization in Scotland) have remained static, and the United Kingdom has the second highest refusal rate—the rate at which next of kin (NoK) dissent from organ donation when it is proposed—in Europe at 43% (Figure 1).6 Increasing consent has been highlighted as the “single most important objective” of the national Taking Organ Transplantation to 2020 strategy.5
Last year, of the 5000 deaths in the United Kingdom where there was a potential for deceased donation, only 1212 (24.2%) became donors.7 Relatives not giving consent has been described as the “biggest obstacle” to improving the organ donation rate.8
The Organ Donor Register (ODR) was introduced in 1994.9 Since then, it has become recognized as a legally valid record of an individual's intention to donate organs after his or her death. However, it remains to be a policy to seek NoK consent regardless of ODR registration status.10 Numbers on the ODR have increased from 11.2 million in 2004 to 19.5 million (31% of the UK population) in 2013. When asked, the general public supports organ donation, with up to 86% saying that they are in favor of donation, and 96% would, if needed, take an organ.11
It is therefore important to understand why the overwhelming stated public support for organ donation does not translate into higher rates of ODR registration and, more importantly, consent for donations and transplants. To explore this discrepancy, we have performed a large survey of factors influencing personal decisions to donate, factors influencing the communication of this decision, and the decisions to grant consent for another becoming a donor. This article concentrates on reporting areas appropriate as targets to maximize consent rates.
MATERIALS AND METHODS
The survey was conducted using both small focus groups and a larger panel survey in association with Optimisa Research (Leeds, United Kingdom).
Discussions were performed with 24 couples and 14 small family groups. These represented the range of major socioeconomic groups, ages, and ethnicities in England and were performed during May 2013. The collated results of these discussions were used as the basis for the survey questionnaire.
Between June 18 and 30, 2013, those registered with the commercial survey panel ResearchNow.com (Plano, TX) were approached and asked to complete a survey related to “health care.” Participants received credits toward the panel's reward program. Those targeted were selected to provide a representative cross-section of the general public aged older than 18 years resident in England. The survey questionnaire was completed online and is available as Appendix S1 SDC,http://links.lww.com/TP/B86. Where there were multiple possible responses without an inherent logical order, these were presented in a randomized order. Respondents were required to answer all questions. After the initial recruitment, an additional cohort was approached with higher proportions of people self-reporting to be from black or minority ethnic backgrounds.
Weighting and Statistics
Data were sequentially proportionally weighted according to 2011 UK National Census data by sex, age, socioeconomic grouping, and ethnicity; respondents who had not responded to a question were not weighted in that round. In each round of weighting, a multiplier was calculated for each category, so that the total weight of answers from any given category would reflect Census proportions. Weighting scores were multiplied after each round. After each round, the newly weighted proportions were used to calculate the next weighting factor. By this method, the total weighted score equalled the number in the initial cohort, but with some respondents' responses counting for more than 1 and some less. National Readership Survey demographic categories were used to define socioeconomic groups.12 Briefly, these are as follows: A, higher managerial, administrative, or professional; B: intermediate managerial, administrative, or professional; C1, supervisory or clerical, junior managerial, administrative, or professional; C2, skilled manual workers; D, semiskilled and unskilled manual workers; E, state pensioners or widows (no other earner), casual or lowest-grade workers.
Tests for correlation were performed after weighting and using multiple ordinal regression, Fisher exact test, or the χ2 test as appropriate with SPSS software (version 21, IBM, New York, NY). Statistical significance was assumed at the 0.05 level; categories with an expected response of less than 5 were excluded from χ2 analysis. Odds ratios (ORs) and 95% confidence intervals (CIs) are presented rounded to one decimal place, percentages to the nearest integer.
Ethnicity, Religious Affiliation, and Age Influence Individuals’ Wishes to Become Organ Donors
A total of 2486 registered to complete the survey after advertisement to the wider research panel. Of these, 17 were excluded because they reported that they were “strongly against” organ transplantation in principle, and 920 who did not complete the entire survey were excluded. Of the 1549 who completed the survey, 1007 were from the initial nationally representative cohort and 542 from the subsequent black or minority ethnic–rich cohort. Only responses from those who completed the entire survey were analyzed.
Table 1 shows weighted and unweighted summary demographic data; data presented hereafter are weighted. Eighty percent report that they would consider donating some or all of their organs: 31% would definitely wish to donate all, 17% definitely wish to donate some, 16% consider donating all, 16% consider donating some, 14% are uncertain, and 6% would definitely not wish to donate.
White ethnicity (OR, 1.6; 95% CI, 1.1–2.4; P = 0.03), absence of religion (OR, 3.8; 95% CI, 2.0–7.6; P < 0.0001), Anglican Christianity (OR, 2.3; 95% CI, 1.2–4.6; P = 0.02), Buddhism (OR, 11.4; 95% CI, 2.1–63.4; P = 0.006), and Hinduism (OR, 5.9; 95% CI, 2.2–15.8; P < 0.0001) were positively associated with a definite desire to donate all organs; age groups 18 to 24 years (OR, 0.3; 95% CI, 0.2–0.5; P < 0.001) and 25 to 34 years (OR, 0.4; 95% CI, 0.3–0.6; P < 0.0001) were negatively associated. These same age groups were however not significantly correlated with a reduced overall wish to donate; all age groups of younger than 65 years were more likely to wish to donate some of their organs than the oldest age group.
When assessed by overall wish to donate, AB social status (OR, 2.8; 95% CI, 1.2–6.3; P = 0.016), absence of religion (OR, 6.2; 95% CI, 2.7–14.1; P < 0.0001), Anglican Christianity (OR, 6.2; 95% CI, 2.7–14.2; P ≤ 0.0001), Roman Catholicism (OR, 3.9; 95% CI, 1.6–9.5), Hinduism (OR, 13.4; 95% CI, 4.5–40.2; P < 0.0001), and Buddhism (OR, 17.0; 95% CI, 2.5–116.0) were significantly associated with a greater likelihood of a definite wish to donate. Islam (OR, 2.5; 95% CI, 1–6.5; P = 0.05) correlated with a definite wish not to donate.
Positive and Negative Factors Are Reported as Affecting Individual Wishes to Donate
When presented with a list of potential positive factors affecting personal donation, “improving and saving the lives of others” (65%), “someone I love could one day need a transplant” (58%), and “my organs will only go to waste when I die” (58%) were identified with by the highest proportion of respondents. Reported negative influences are presented in Table S2 (SDC,http://links.lww.com/TP/B85). Overall, the 3 most agreed-with negative factors reported were that respondents did not wish to “think about their own death” (18%), were concerned that their “family might be upset” if they donated their organs (17%), and that they “worry that hospital staff might not do their best to save [their] life” (17%). Among those who would consider donation or “don't know” their position, these statements were agreed with by 27%, 25%, and 23% respectively.
Previous Discussion Is More Important Than ODR Registration When Considering Consenting for Another
Table 2 shows the effects of a loved one having previously discussed a wish to donate and/or having registered on the ODR on respondents granting consent in a hypothetical situation. Both previous discussion and ODR registration had positive effects on consent rates with the former being more powerful: where there had been previous discussion and ODR sign-up, refusal of consent was more than 10 times less likely. An ODR sign-up was significantly correlated with previous discussion (OR, 5.7; 95% CI, 4.5–7.2; P < 0.0001).
Many Are Unaware That NoK Are Approached to Confirm Consent in All Potential Donations
When respondents were asked whether they thought that NoK would be approached to confirm the wishes of a person registered on the ODR, 13% thought that their NoK would not be contacted at all about a decision to donate, 39% thought that the NoK would be informed of the planned donation but not asked to confirm the deceased's wishes, and 48% thought that a confirmation of consent would be required. When a potential donor was not on the ODR, 24% thought that the NoK would not be approached about organ donation, whereas 76% thought that they might be approached.
Individuals’ Decisions to Consent for Another Are Influenced by Their Own Views, Even Where the Potential Donor’s Wishes Are Known
When an individual's wishes regarding potential donation of their own organs were compared with their likelihood of consenting for another, there was significant transference of views: those opposed to donating their own organs were less likely to agree to another donating even if the potential donor had expressed a wish to do so through discussion, ODR registration, or both (Table S2, SDC,http://links.lww.com/TP/B85). Female sex (OR, 1.9; 95% CI, 1.3–2.6; P < 0.0001), absence of religion (OR, 2.8; 95% CI, 1.6–5.0; P < 0.0001), Anglican Christianity (OR, 5.7; 95% CI, 3.0–10.8; P < 0.002), Roman Catholicism (OR, 3.4; 95% CI, 1.6–7.1; P = 0.001), other Christianity (OR, 3.7; 95% CI, 1.6–8.3; P = 0.002), Hinduism (OR, 4.7; 95% CI, 1.6–13.7; P = 0.004), and non-Asian ethnicity (OR, 6.7; 95% CI, 1.3–35.7; P = 0.026) all correlated with a tendency to confirm consent when an individual's prodonation wishes were known.
When potential factors affecting the decision to consent to another's donating without previous discussion or ODR enrollment were presented, respondents identified “it could help to save someone's life” (70%), “I believe it's right for people to donate their organs” (61%), and “I think it's the right thing to do in that situation” (58%) as positive factors. Concerns about delaying a funeral or burial (23%); “worry that their organs may not be used” (23%); and that respondents “might feel differently, depending on who the person is” (17%) were identified with most commonly by those uncertain with regard to consent.
Altruistic Wishes Influence a Decision to Consent for Another, but Misconceptions About the role of Consent Are Common
Positive thoughts among those who would consent without knowledge of previous wishes (Table S3, SDC,http://links.lww.com/TP/B85) included expressions of the benefit to others: “it could help save someone's life” (70%) and that it was “right for people to donate their organs” (61%). Among those who became uncertain without a previous indication of a wish to donate, factors were as follows: “it could help save someone's life (28%); “it's making the best out of a sad situation” (38%); and “if they were strongly against organ donation, they would have told me” (28% compared with 40% of those who agree in any situation).
When presented with potential actions that might help those uncertain about consenting to another's donating, “speaking to the rest of my/their family and friends” (65%), “thinking about the type of person they were” (46%), and “knowing which of their organs would be donated” (31%) were identified with by the highest proportion of respondents (Table S4, SDC,http://links.lww.com/TP/B85).
Table S5 (SDC,http://links.lww.com/TP/B85) details factors reported as preventing individuals giving consent with or without previous discussion and ODR enrollment. Respondents stated that they “couldn't make that decision by myself” in more than 20% of cases, that they “don't have the right to make that decision for someone else” in more than 20% of cases across all categories, and many expressed concerns that the individual might have “changed their mind.” Where there was no previous discussion, 26% felt that without having spoken about donation, ODR registration was insufficient as an expression of the individual's wishes. Where there was no previous discussion, 34% felt that in the absence of information, they should decline consent in case the individual did not wish to be a donor.
Many Have Not Discussed Their Wishes About Organ Donation
Of this sample, 47% had discussed their wishes regarding organ donation with others. White ethnicity (OR, 1.66; 95% CI, 1.2–2.4; P = 0.006), female sex (OR, 1.8; 95% CI, 1.4–2.3; P < 0.0001), and Buddhist religion (OR, 7.5; 95% CI, 1.2–47.4; P = 0.031) correlated with previous discussion. Factors reported as preventing discussion are reported in Table S6 (SDC,http://links.lww.com/TP/B85). The 3 most commonly cited factors were “It's never come up in conversation” (44% overall and 41% of those who profess a desire to donate but who have not discussed the issue), “I don't want to talk about death” (21% and 9%, respectively), and “I haven't got round to it yet” (17% and 20%, respectively).
Misconceptions, Religion, Sex, and Ethnicity All Affect ODR Registration
Of all those surveyed, 82% stated that they were aware of the existence of the ODR. Men (OR, 1.6; 95% CI, 1.2–2.2; P < 0.001), non-white ethnicities (OR, 2.5; 95% CI, 1.6–3.7; P < 0.0001), and those in the age groups 18 to 24 years (OR, 2.2; 95% CI, 1.2–2.2; P = 0.015), 25 to 34 years (OR, 2.0; 95% CI, 1.2–4.0; P = 0.016), and 45 to 54 years (OR, 1.8; 95% CI, 1.1–3.5; P = 0.034) were more likely to be unaware. Overall, 531 (34%) of the respondents reported that they had enrolled on the ODR: 23% were definite that they were enrolled, 12% thought that they had, 23% thought that they had not, 35% were sure that they had not, and 8% were uncertain. AB social grade (OR, 3.8; 95% CI, 1.3–11.5; P = 0.02), other Christian religion (OR, 2.0; 95% CI, 1.0–4.0; P = 0.037), and white ethnicity (OR, 2.2; 95% CI, 1.5–3.3; P < 0.001) were positively correlated with enrollment; Islam was negatively correlated (OR, 0.3; 95% CI, 0.1–0.9; P = 0.03).
Factors acknowledged as negatively affecting a decision to register on the ODR are represented in Table S7 (SDC,http://links.lww.com/TP/B85). Of these, the 3 most frequently cited were “I might change my mind and I don't know if you can take your name off” (37%), “I don't know how to put my name on the register” (18%), and “I don't see the point because my family already knows my wishes” (16%).
To become an organ donor in the United Kingdom, either a person who dies in appropriate circumstances must have given previous consent that their NoK subsequently confirms or their NoK must consent on their behalf on the understanding that this would have been their wish. Of this weighted survey group, more than three quarters wished to become organ donors, and one third stated that they were registered on the ODR. This significant support is in keeping with a 2003 survey work and meta-analysis of previous survey data13,14; 30% of the population of England were registered on the ODR in March 2013.15 Our findings that non-white groups are less likely to wish to become organ donors are consistent with previous findings and experience.7,16 Our findings about the effects of religion on individuals confirming consent for others are consistent with national statistics.7
Our initial analysis demonstrates that younger groups are less likely to wish to donate all of their organs. This is in contrast to findings with respect to donation in general both from the United Kingdom and from the United States.7,17 However, although the young age groups are less likely to wish to donate all of their organs, they are more likely to wish to donate selected organs. When overall desire to donate is analyzed, the young age groups are no less likely to wish to donate. This can be seen in Table 1. The finding that younger age groups are more likely to wish to specify which organs they donate is novel and warrants confirmatory study.
Positive motivations toward a personal wish to donate were most commonly altruistic, focused on reciprocal benefit or the avoidance of waste. Recent work using variations in the approach to soliciting online ODR enrollment has illustrated that emphasizing the reciprocal benefits—in contrast to altruism or possible loss—may be the most effective in ultimate sign-up.18 Other studies have emphasized gain-framed messages as being most effective in promoting individual decisions to donate.19
The most frequent negative influences on personal wishes to donate reveal several areas appropriate as targets to maximize donation. Those who felt that they might be “too old” might be informed that more than half of organ donors are older than 50 years and more than a third are older than 60 years.4 Concerns that hospital staff might not “do their best” for potential donors were not cited by families who had declined consent in one UK study20 and were only mentioned by 1 of 1241 families in the 2013 UK Potential Donor Audit but have been identified as significant in a US work and termed medical mistrust.7,21 The frequency of statements suggesting that organ donation might be against an individual's faith or religion is inconsistent with the fact that all the religions identified by respondents to this survey accept the principle of organ donation.22 More detailed questioning would however be required to explore the specific tenets of belief that respondents felt were incompatible.
Both previous discussion and ODR registration significantly affected the likelihood of consenting for another, with the former being more powerful: only just more than half would consent for a person on the ODR without discussion, whereas 87% would do so after discussion. The particular importance of previous discussion is consistent with previous work with the potential donors' families.23,24 The strong correlation between a respondent's personal wishes and his or her likelihood of giving consent—even to the extent of declining when the potential donor's views were clearly positive—is something that should be challenged, and the importance of individual wishes should be emphasized. Interviews with those who have declined donation in contrast to the views of the deceased highlight not only concerns regarding keeping the body whole but also subsequent regret over the decision by a number of respondents.25
When asked what might allow those who were uncertain about consenting as NoK to reach a decision, most cited a need for further information or additional time to consider the views of the potential donor. However, among those actually approached regarding donation, lack of information and time seem to be reported as lesser factors than adverse reactions to the organ donation process itself.26,27
More than half of our respondents were unaware that NoK consent would be sought when a potential donor was on the ODR. Twenty-four percent were unaware that the NoK might be approached for potential consent in appropriate circumstances. These 2 findings may partially explain why 36% of our prodonation respondents had not discussed their wishes. However, when asked why this group had not discussed their wishes, only 13% stated that they “didn't feel that they needed to,” but 41% stated that it had “never come up in conversation.” Thirteen percent felt that the issue was a personal choice, and so they “didn't need to talk … about it.” That many prodonation individuals feel unable to provide consent for another without previous discussion demonstrates that defaulting to not consenting is a common position. Promotion of discussion in general and highlighting the necessity of NoK consent in donation are appropriate targets to improve donation rates.
Although less powerful in influencing NoK consent rates than previous discussion, ODR sign-up does influence hypothetical consent for others and also correlates with the likelihood of discussion. That donor ODR enrollment increases confirmation of consent is well documented. A significant proportion of our respondents stated that they were unaware (14%) or were uncertain (4%) of the ODR's existence. Eight percent were unaware of their ODR registration status, perhaps suggesting perceived obstacles to doing so. We note that it is possible to query registration status online and that photocard driving licences bearing the code “115” denote registration.
Of the reported barriers to ODR enrollment among those who professed support, other than those who had not found time, a major factor was an uncertainty regarding whether they could subsequently remove their name. Highlighting the existence of the online form to facilitate removal of details from the register at the NHS Organ Donation website may address this issue. Other cited issues being “too old,” not knowing “how to put my name on the register,” and not seeing “the point because my family already know” are all potentially addressable by further education. The persistence of a large number who had not found time despite multiple available routes and advertising strategies in this Internet-aware cohort suggests that this issue may be challenging to address.
A key role of this survey was an attempt to address issues that may cause NoK not to give consent. In addition to those factors discussed earlier, a number of negative influences were recognized by respondents. Common among these were concerns about body integrity and the physical effects of surgery—something that has been identified elsewhere and termed the ick factor.26 Large numbers expressed concern that ODR registration was insufficient as a communication of the deceased's wishes, and more than a quarter would want proof over-and-above being told of ODR enrollment. Many felt that they “couldn't make that decision [by themselves]” or that they “didn't have the right.” Addressing issues around distaste for the process of organ donation remains challenging because of its inherent nature. Statements of incomplete confidence in the ODR and lack of recall of previous registration raise the logistically challenging issue of periodic renewal.
Our study design has several limitations. First, the questions regarding consent are necessarily hypothetical, do not reflect the emotional milieu and precise interpersonal relations of a real decision, and do not account for the way in which an approach for donation is made.25,28 Second, unquantified biases have been introduced by the nature of our commercial panel and by excluding those who expressed strong opposition to organ donation in principle. By their inclination to complete an online survey, our panel may be more opinionated than the general population, although the overall ODR registration rate is similar to the national average. Third, the challenges inherent in coding free-text responses mean that potential factors influencing decision making were identified from previous focus group discussion and suggested to our respondents rather than derived from open questions. Inconsistencies such as those who declare definite wishes to become donors but would not consent for another in any situation raise questions about how consistently some responded to or understood the survey questions. Finally, the analysis of the detailed effects of demographics on responses presented here, particularly with regard to ethnicity and religion, is incomplete through reasons of space, and we intend to publish further analysis of this large data set.
By accepting these limitations, these data inform future interventions aiming to have a real-world impact on consent rates and hence donations. Alongside ongoing efforts to optimize methods to the manner in which NoK are approached,28 these data suggest the following key areas for intervention:
- □ Encouraging discussion of organ donation on the basis that this is the most likely way for any individual to attain his or her wish to either be or not be an organ donor. Large numbers suggested that they simply had not found time to discuss donation.
- □ Similarly, the major reported reason for not joining the ODR is not having found an opportunity. Many are unaware that individuals may remove their names from the register and report this as a barrier to enrollment.
- □ More than half are unaware that in any potential donation situation, the NoK's consent will be sought. This may partially explain lower discussion rates.
- □ Apparent misconceptions regarding religious viewpoints, actual ages of organ donors, and the medical care of potential donors inhibit giving consent.
- □ A significant proportion will not confirm consent where it is clear that the individual concerned has expressed a wish to become a donor. This is especially common when the NoK's personal wishes are against donation and should be challenged as denying the deceased their express wish.
- □ Further work is necessary to clarify the influences behind the opinions expressed in our survey, to relate work from this hypothetical survey to real-world decisions on consent, and to identify the most effective ways of targeting the low consent groups identified.