Australia is a multicultural society of just over 25 million people, with approximately 310 different ancestries, 300 languages, and 150 religions. This diversity suggests that Australia’s people might hold a multiplicity of beliefs regarding organ donation. Research shows that most people in Australia have a strong, positive perception of organ donation; they believe that organ donation helps others and benefits society. However, the current rate of 21.6 donors per million population is below expectations and below the demand for organs needed for transplantation. This has led us to ask whether donation consent rates are differentiated by religious and cultural affiliation. We present a case study of New South Wales, Australia, to address this issue. New South Wales is the most populous state in Australia and is also religiously and culturally diverse. Donation consent data (2016-2019) by ethnicity and by religion show that donation consent rates have improved but not across all groups. Initiatives to increase awareness and support for organ and tissue donation among culturally and linguistically diverse and Aboriginal and Torres Strait Islander communities are discussed. Research is also presented that investigates whether registration rates on the Australian Organ Donor Register can be increased and the implications of this for increasing consent for donation. This research underscores the importance of respecting the diversity of beliefs held regarding organ donation, both positive and negative; offering all people a face-to-face interaction opportunity to consider their beliefs about organ donation, ask questions, and raise concerns without judgment; and providing people with an immediate opportunity to register their donation decision on the Australian Organ Donor Register. The challenges associated with adopting these initiatives are considered along with the role of religious and cultural leaders within the context of organ donation and registration; the unspoken concerns of cultural and religious groups are also addressed. In conclusion, we propose that the rich diversity of Australian society is more of a backdrop than a barrier to organ donation.

Key words : Cultural diversity, Immediate registration, Religious beliefs, Transplantation

Introduction

The Australian population of 25 718 140 is one of the most multicultural societies in the world, with approximately 150 religions, 310 different ancestral groups, and 300 spoken languages.¹ Australia’s record of successful organ and tissue transplantation is woven within this tapestry. However, the full potential of this life-saving therapy is constantly challenged by organ and tissue availability. Religious and cultural diversity are often suggested to play a role, but the picture is not fully understood. We address this and discuss the different religious and cultural approaches to organ donation in Australia.

Australia’s Religious History
The religious profile of Australia has changed drama­tically since the Australian Aboriginal and Torres Strait people first inhabited the land approximately 50 000 years ago. Traditional Aboriginal religions encompass a belief in the reciprocal relationship and intercon­nectedness between people, animals, and the natural world, and the creation of the universe during a period known as the Dreamtime.² The First Fleet,”^2,3 a convoy of British ships, brought Christianity to Australia from England and Ireland in 1788, along with a sprinkling of secular enlightenment and Judaism.^2,4 The discovery of gold in the 1850s and 1860s led to the addition of Chinese Confucians and Buddhists, Pathan Muslims, and Punjabi Sikhs to the non-Christian communities.⁵ However, Australia was identified as a predominantly Christian country in 1911, after 96% of those surveyed in the first census reported being Christian.6 Post-World War II immigration started to diversify the existing population, but it was not until the abolition of the White Australia Policy in 1966 that Australia’s religious profile changed markedly with immigration from non-European countries, where religions other than Christianity were prevalent.^4,7 The religious profile of Australia is now Christian, multifaith, and secular; 60% of the population identify as religious, 30% as having no religion, and 10% did not respond (see Figure 1).¹

Australia’s religious profile continues to change. In the 2016 census, half of the population (49.3%) were either born overseas or had at least 1 parent who was born overseas.⁸ Of those who were born in Australia, currently, only 48% describe their ancestry as either “Australian” or “Indigenous Australian.”⁸ Aboriginal and Torres Strait Islander people (Indigenous Australians) make up 2.9% of the population.⁹ Of these, 54% report being affiliated with a Christian religion, whereas approximately 2% hold traditional Aboriginal religious beliefs.¹⁰ This is argued to reflect the effect of colonization and the introduction of Christianity. This figure is also unlikely to be representative of the exact number.³ The fastest-growing ancestral groups (which the Australian Bureau of Statistics states is the best indication of a person’s cultural group) are from China and India.¹¹ The fastest-growing religious category is that of no religion, and young adults (18-34 y) are more likely than older adults to report either having no religion or being affiliated with a non-Christian religion.⁷

Diversity in ancestral backgrounds has led to diversity within denominations and ethnolinguistic religious expression. For example, the Australian Bureau of Statistics lists 97 denominations within the Christian classification, and Catholicism is delineated into Western, Maronite, Melkite, Ukrainian, Chaldean, and Syro-Malabar.¹²

The Role of Religious Beliefs and Cultural Affiliation in Organ Donation in Australia
The diversity in ancestral background and religious identification suggests that Australia’s people would hold a multiplicity of beliefs about organ donation. This is alluded to in a small number of Australian studies that report cultural and religious differences in the perceptions and knowledge regarding organ donation.^13-15 However, Australian research consis­tently reports that most people have a strong, positive perception of organ donation; they believe that organ donation helps others and benefits society. For example, organ donation “…gives back to the community,” is “…a good note to go out on,” and “…is a parting gift.”^16-20

Similarly, Australia’s opt-in donation system²¹ promotes donation through the Gift of Life doctrine as a selfless act of altruism benefiting those in medical need and society as a whole.^22,23 Organ donation is permissible within all major religions in Australia, and religious leaders have worked closely with the Organ and Tissue Authority to produce online faith permission statements.^24,25 Despite this pro-donation background, organ donation rates in Australia are low. The current rate of 21.6 donors per million population is below expectations and below the demand for organ transplantation,²¹ which leads us to ask whether donation consent rates are differentiated by religious and cultural affiliation. We present a case study of New South Wales (NSW), Australia, to address this issue. NSW is the most populous state in Australia and is also religiously and culturally diverse.

New South Wales as a Case Study: Donation Consent by Ethnicity and Religion
The NSW population is now 8 110 000.26 In 2016, 27.6% of the population was born overseas, with 21.2% from countries with non-English-speaking backgrounds.⁸ The religious profile is similar to the national profile, with slightly higher percentages of multifaith religions.²⁷

At 60%, organ donation consent rates in NSW are similar to the national consent rates (61%).²¹ However, this rate is not evenly spread across social groups. For example, Waller and colleagues²⁸ identified that, between 2010 and 2015, those born overseas with English as a second language or those who identified as Aboriginal or Torres Strait Islanders “…were around half as likely…” to give consent to donation.

More recent data (2016-2019) sourced from the DonateLife Audit and NSW Referral data²⁹ suggest that donation consent rates have improved but, again, not across all groups. We present our data by ethnic group and by religious group, with data described in 2 ways.

First, the data are presented as percent donation consent for each group derived from the total number of consents in NSW during that time period. In Figures 2A and 3A, each pair of bars for each group shows the donation consent for that group expressed as a percentage of all donation consents in NSW plotted beside the percentage of this group in the total population in NSW.^8,12,27 This highlights the size of that group in the NSW population. Stereotypes and the availability heuristic³⁰ can lead to the assumption that the number of people who identify with each group is different from what it actually is.

Second, the data are presented as a percentage donation consent for that group derived from the total number of consents and declines for that group during the time period. As shown in Figures 2B and 3B, the circles represent the group’s total comparative size: the larger the circle, the larger the number of requests made to that group to consider donation (consents and declines) during the time period.

It is important to note that other factors such as donor age, donor medical profile, and circumstances of death may have also influenced these figures, but we were unable to separate this information from the data. Similarly, there are differences in how categories such as “no religion” and “ethnicity” were defined in the data sets. The 2016 Australian Bureau of Statistics census data was the most recent census data available.

As shown in Figure 2A, the highest percentage of donation consents for 2016 to 2019 was given by families who were identified as Oceanian, that is, from Australia, New Zealand, or the central and southern Pacific Islands. This percentage is similar to the percentage of people who identify as such in the NSW population, suggesting that donation consent for this group was not influenced by ethnic identification. A similar pattern is shown for northwest Europe, southeast Asia, sub-Saharan Africa, and the Americas, but the population percentages and the donation consent percentages are much smaller. Figure 2B reiterates these findings and highlights that the donation consent rates for these groups are between 60% and 75%. Percent consent rates are noticeably lower for North Africa and the Middle East, and Northeast Asia.

Similarities and differences emerge for some religious groups between the consent percentage from the total consents for this period (2018-2019) compared with the percentage of that particular religious group in the NSW population. As shown, Christianity, Judaism, Sikhism, Hinduism, no religion, and religions unknown have similar consent rates (from the total consent percentages for 2018-2019) compared with the percentage of each of these groups in the NSW population. This is reiterated in Figure 3B, which highlights that these groups have consent rates greater than 55%. Buddhism and Islam consent rates from the total consent percentages are noticeably lower than the percentage of each of these groups in the NSW population (Figure 3A). These groups also have the lowest percentage consent rates (see Figure 3B). However, caution must be exercised when interpreting the data given the small total size of the groups.

The data presented here suggest donation consent has improved at the state level since the 2010 to 2015 data presented in the Waller study28 and has improved across some religious and ethnic groups. In response to the National Reform Programme in 200931 and the NSW Government Plan in 2012,32 initiatives have been developed that may have contributed to this result.

New South Wales as a Case Study: Initiatives to Increase Donation Consent
Culturally and linguistically diverse communities
The different programs and campaigns targeting culturally and linguistically diverse communities in NSW have ranged from interacting with the public (sometimes in the group’s native language) at various cultural and religious festivals (eg, Eid Festival, Chinese New Year) to storytelling theater events and engaging with young multicultural filmmakers to create innovative films, all with the aim of increasing awareness and support for organ and tissue donation. To achieve these aims, the NSW Organ and Tissue Donation Service works with a variety of partners, community leaders, and organizations that bring invaluable cultural knowledge and experience to help shape the design and delivery of programs, ensuring that the message is culturally appropriate, accessible, and successful.

Aboriginal and Torres Strait Islander communities
Indigenous Australians are 12 times more likely to require dialysis, 5 times more likely to be hospitalized for chronic kidney disease, and 3 times more likely to die from chronic kidney disease than non-Indigenous Australians, thereby rendering community awareness strategies critically important.

Noting the importance of self-determination in Indigenous communities and the unique cultural requirements, awareness-raising activities are led by Aboriginal and Torres Strait Islander people that focus on the benefits of organ and tissue donation for Indigenous people.

Increasing Registrations on the Australian Organ Donor Register
Australia’s national organ donor register, the Australian Organ Donor Register (AODR),34 records organ and tissue donation decisions. An individual can register to donate all organs and tissues, can register some organs and tissues (specifying which), or can choose not to donate. Historically, donation decisions were recorded on the state’s driver’s license; however, in all jurisdictions except South Australia, the recording of donation decisions has transitioned to the AODR. The national register facilitates organ and tissue donation by providing medical personnel in all jurisdictions access to, or verification of, an individual’s donation decision. Individuals are encouraged to register their decision online through the DonateLife and government Medicare websites.³⁴ Registration can also be completed on a hard copy form.³⁴

Registration is important for another reason. In Australia, the family will always be asked to confirm the deceased’s donation decision in the intensive care unit or make the final donation decision if the deceased’s wishes are unknown. Statistics show that between 90% and 93% of consent-to-donate registrations are honored by the next-of-kin in the intensive care unit, whereas only 44% to 52% of families will consent to donation when the wishes of the deceased are unknown.^21,35 This is largely because families must make the donation decision themselves, which adds anguish to a time of grief. Families are tired, overwhelmed, and often simply unable to process information given by health care professionals.^36,37

Therefore, registration is pivotal to donation consent. However, in 2019, only 34% of people had registered nationally (39% in NSW).²¹

The Immediate Registration Opportunity Initiative
The Immediate Registration Opportunity Initiative was designed to increase the number of people who register their donation decision on the AODR. Working with the support of the NSW Organ and Tissue Donation Service, the initiative is for all people: all religious groups, all cultures, and all ages. Premised on the principles of respect, interaction, and immediacy, the initiative involves engaging with the public in face-to-face interactions, discussing concerns and fears about organ donation without judgment, and offering everyone an immediate, on-the-spot opportunity to register on the AODR.

Respect: Importance of Respect for the Diversity of Beliefs Held About Organ Donation
The world’s first heart transplant performed in 1967 (Christian Barnard) and the kidney transplants that preceded this38 situated the origins of donation and transplantation in the domain of the medical world. However, this inherent medicalization of donation and transplantation has led to the assumption that the medical model of organ donation is what the members of the public understand donation to be.²² For transplant procedures to occur, people without a medical background need to donate their organs and tissues, an act or intention that crosses not only the boundaries between the medical and nonmedical worlds but social boundaries that differentiate life from death.³⁹

What is understood by those in the nonmedical world about organ donation is imbued with cultural, religious, and societal values and beliefs.19,40 We have found that strong public support, consistently reported for organ donation, is often coupled with an unspoken level of concern or fear as cultural, religious, or societal values intersect with rational medical knowledge. These beliefs often manifest in a “Yes, but…” response, leading to an unsure and ambivalent procrastination, (I will register tomorrow) or to a no donation decision: “I think organ donation is a great idea, but will I really be dead? Organ donation saves lives, but I don’t want to be cut up. It is the right thing to do, but will doctors try as hard to save me if I agree to be a donor?”^22,41 Reflecting societal, cultural, or religious beliefs, lay knowledge and understanding about donation and organ transplantation need to be respected in their own right, rather than as myths, falsehoods, or erroneous knowledge.⁴²

Interaction: Face-to-Face Opportunity to Consider Beliefs About Organ Donation
It is vital that people have an opportunity to engage in high-quality, meaningful interactions during which they can ask questions and raise concerns without judgment. The conversations need to start with each person’s world view and beliefs about organ donation rather than leading with medical knowledge.

As part of this interaction, we invite people to complete a short survey that asks about the positive and negative aspects of donation. The questions prompt people to ask more questions and raise concerns. The survey enables people to ask about issues they might otherwise feel hesitant to discuss: “Will I really be dead? What will my eyes look like in a casket?”^22,41,43

It is not uncommon for people to say that their religion does not allow them to donate. They often inquire about their religion’s stance regarding donation. Once this religious viewpoint is discussed,²⁵ other concerns and fears begin to be expressed. These may concern the body not being whole or being disfigured, taboos about death, or uncertainties about the concept of brain death. In general, there is a lack of knowledge surrounding the processes and procedures involved in organ donation and the registration process. What is very apparent is that the donation decision is an important decision for many people. People need the time and space to talk about it.

A Profile of Organ Donation Beliefs
From the 1147 people with whom we interacted across 9 different locations, a total of 1050 participants completed “organ donation belief” scale.22,41 The responses to the scale were collapsed across locations, and a confirmatory factor analysis revealed a 4-factor parsimonious structure, which is consistent with our previous research (df = 46; χ2 = 127.97; Tucker-Lewis index = 0.975; comparative fit index = 0.983; root mean square error of approximation = 0.038).

The 4 factors were identified as gift of life beliefs (eg, organ donation is about helping other people; α = .75); benefits of donation to the self (eg, deciding to become an organ donor after death adds extra meaning to life; α = .84); negative consequences associated with donation (eg, organ donation leaves the body disfigured; α = .72); and concerns over the medical care associated with organ donation (eg, by registering to become an organ donor, doctors might declare death too soon; α = .74).

This profile (see Figure 4; Table 1) is typical of the beliefs reported within each location where an immediate registration opportunity has been offered.^22,41

On the left of Figure 4 are the strong positive beliefs about donation consistently reported by the public.^16-19,44 Encapsulated within the scales measuring “gift of life” and “benefits to self” are items that measure the extent to which organ donation is about helping others, saving lives, enabling a person to live on, and adding meaning to life.

On the right of Figure 4 are the weaker negative beliefs about organ donation. Encapsulated within the negative consequences and concerns over medical care scales are items that measure the extent that organ donation leaves the body disfigured, leaves a person with a piece missing, the belief that doctors are hard to trust, and that being a donor may mean that doctors will declare a donor dead too soon or will not try as hard to save an organ donor. Although comparatively weak, these beliefs are very potent, such that the smallest increase in these negative beliefs decreases the probability of registration. For example, an increase in a mean scale score on negative consequences from 1 to 2 decreases the probability of registration from 53.8% to 48.9% when all other predictors are held constant (see Figure 5; see also41).

Immediacy: On-the-Spot Interactive Opportunity to Register on the Australian Organ Donor Register
Offering immediate registration plays a pivotal role in translating beliefs about organ donation into actual donation registrations. Drawing from research conducted in the United States,^45,46 we initially investigated the efficacy of giving the public an immediate, on-the-spot opportunity to register on the AODR compared with a delayed opportunity to register online at home.⁴³ The latter mirrored current registration practices in Australia.³⁴ The results were unequivocal. Despite similar demographic profiles and similar opportunities to interact and ask questions about organ donation, significantly more participants registered in the immediate (48.6 of 81; 60%) compared with the delayed (8 of 69; 11.6%) condition (χ²[1, N = 150] = 41.20; P < .001).⁴³

Once people have had an opportunity to interact with us and complete the survey, they are offered an on-the-spot opportunity to register on the AODR. Registration is typically on a hard copy form. Importantly, people are told they have a choice in their registration decision (ie, yes to donating all organs and tissues, yes to donating some organs and tissues, or no to donation) and that they can change their decision at any time.

Findings
Our research demonstrates that the 3 principles of respect, interaction, and immediacy are fundamental to interventions designed to increase registration rates. The Immediate Registration Opportunity Initiative regularly resulted in registration rates substantially higher than the national registration rate of 34%.²¹ In the data set presented here, which comprises 1147 participants across the 9 locations, the number of people who registered from those eligible to register was 702 (61.2%). The people who registered at the Immediate Registration Opportunity Initiative were from a wide range of religious and cultural backgrounds and typically reflects the proportion of these groups in the NSW population (see Figure 2 and Figure 3).

From a total of 1147 people across 9 locations, 33 religious identifications were reported. These are shown in Figure 6A as a percent registration for a particular religious group from the total number of registrations. These are plotted beside the percentage of that religious group in NSW.⁸ Figure 6B shows the number of registrations for that religious group from the total number of people eligible to register in that group (ie, yes or no to registration).

Similarly, within the same data set, 74 cultural identifications were reported. These are shown in Figure 7A as a percent registration for that particular cultural group from the total number of registrations (N = 1147). These are plotted beside the percentage of that cultural group in NSW and, in Figure 7B, as a percent registration for each cultural group beside the total number of people eligible to register in that cultural group (ie, yes or no to registration).

What We Now Know
Deciding to register a donation decision is an important decision for most people. Organ donation is not an issue that people tend to think about in the course of their everyday lives. Our research suggests that people appreciate being offered the time to consider their beliefs, ask questions, or simply talk with someone about organ donation and registration. Furthermore, outcomes suggest that immediate registration helps to counter procrastination and that procrastination is linked to fears and negative concerns. If people are left to register in their own time, registration will be left for another day, another time, or another place.^41,43 Our results also suggest that the context in which people are asked to think about organ donation will affect the strength of their beliefs about organ donation at that point in time.^47-49 If a person is asked to register in a friendly, positive environment, they will be more likely to register than if they are asked when they are feeling stressed, harassed, or grief-stricken. This has implications for asking people to consider organ or tissue donation for the first time in the intensive care unit when their relative is in the terminal phase of an illness. Increasingly, it is becoming clear just how crucial it is for the donation decision to be made outside of the intensive care unit—before families find themselves in the unenviable position of having to decide whether or not their loved one should be an organ donor, often without knowing what their loved one would have wanted.

Limitations
The research presented here was conducted in the field rather than in a laboratory or clinical setting. This increases the ecological validity of our results but brings with it limitations in relation to sampling and measurement. Similarly, caution should be exercised when interpreting the donation consent figures in light of the small total size of the groups. We are also aware that the donation consent figures may have been influenced by factors other than religion and ethnicity such as donor age, donor medical profile, and circumstances of death.

Conclusions

It may be that this rich cultural diversity of Australian society is more of a backdrop than a barrier to organ donation. However, we do need to be aware of and respect the relationship between religious beliefs and organ donation, along with the intersection between religious and cultural beliefs. We need to involve religious and community leaders in initiatives to increase awareness of organ donation and optimize registrations on the AODR. Moreover, it is suggested that everyone is offered an immediate, on-the-spot opportunity to register their organ donation decision rather than being left to register in their own time, online, or at home.

Registration can become the social norm across NSW and Australia—in contradistinction to our current situation—where the norm is to be unre­gistered. To do this, we need to scale these initiatives, up and out, so that we reach the tipping point where registering an organ donation decision is a normative behavior and is therefore self-perpetuating.

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