Applying utilitarianism to the presumed consent system for organ donation to consider the moral pros and cons

In March 2019, the Organ Donation (Deemed Consent) Bill received Royal Assent and became an Act of Parliament. Named Max and Keira's Law after the girl who donated and the boy who received a heart, the act introduces an opt-out system for organ donation in England (Department of Health and Social Care (DHSC), 2019). In Wales, such legislation has been in effect since 2015, while in Scotland it will come into effect in 2021; it is currently under consideration by the Northern Ireland Assembly.

The opt-out system (also commonly referred to as presumed consent or deemed consent) refers to a process whereby all people will be presumed to have given consent to donate their organs after death. This excludes those who are under the age of 18 years, are not British citizens, have lived in England for a period shorter than 1 year, have registered their wish to not donate their organs (including those who have registered this wish informally with family members), or do not have the capacity to understand the changes to the system (DHSC, 2019; British Medical Association (BMA), 2021). Furthermore, the idea that this is a ‘soft’ opt-out system ensures that the consent of the family is still required for the donation to proceed, as per the Human Tissue Authority (2020) codes of practice.

It is thought that introducing the presumed consent system will lead to an increase in organ donation and, consequently, a decrease in deaths caused by a lack of available organs. There is evidence that such changes will occur in the years following the implementation of the new system: for example a systematic review of six studies found that deceased donation rates increased by up to 76% over 5-14 years in countries that implemented the presumed consent system (Ahmad et al, 2019). Furthermore, countries that have implemented the opt-out system have been found to have the highest donation rates: for example, Spain currently has the highest number of donations globally (Dalal, 2015). According to the International Registry in Organ Donation and Transplantation (2019), countries that have adopted the presumed consent system have some of the highest deceased donation rates globally (Table 1).

This change, of course, comes with its own set of ethical and legal issues, the exploration of which is of interest, given the recent implementation of the scheme. The change brings with it debates, particularly those relating to informed consent and whether the family should be allowed to refuse on behalf of the patient. In this article, the authors use the theory of utilitarianism to explore the ethical issues arising from the debate.

Utilitarianism

Utilitarianism is, in essence, a consequentialist theory that rests on the fundamental premise that the morally preferable action is that which produces the most good overall—it is associated with philosophers such as John Stuart Mill. Like Mill, utilitarians believe that good pertains to happiness or preferences, and therefore that the best outcome is one that maximises the preferences of the greatest number of people and results in distress for the least. This can include the person performing the action, those affected by the action and those important to those affected by this action (Savulescu et al, 2020).

The theory of utilitarianism attempts to simplify decision-making by quantifying satisfaction and dissatisfaction. Utilitarians are of the view that each person's satisfaction or dissatisfaction is equal and has the same value as that of another. Bennett (2015) stated that, since utilitarianism is a consequentialist theory, the decision-maker's relation to those who may benefit from an action is unimportant because each person's satisfaction is considered equal. Furthermore, Bennett (2015) went on to acknowledge that utilitarianism does not recognise that the actions themselves can be morally wrong or right, independent of whether or not they bring about positive consequences, and stated that only the consequences that these actions result in are of any importance. Utilitarianism's practical applications may be extended to the discussion surrounding the ethics of the presumed consent system for organ donation.

Utilitarianism is an umbrella term encompassing a myriad of variations of the theory, including act utilitarianism and rule utilitarianism. Act utilitarianism refers to the idea that the right act is that which produces the most good or maximises the preferences of the highest number of people, whereas rule utilitarianism states that, if a rule produces the most good in the majority of situations, then it is morally right (Gandjour and Lauterbach, 2003). The introduction of the deemed consent system essentially brings with it a shift to a system resembling rule utilitarianism. That is to say that, prior to this change, individuals decided whether donating their or a family member's organs would bring about the most satisfaction, weighing this up against the potential consequences of the alternatives, including their own satisfaction and dissatisfaction and that of those important to them—donation would only proceed with explicit consent from either the donor themselves or that of the family.

Although the wishes of the family are still considered, under the new system it is assumed that, in most cases, the best consequences will be brought about by routinely donating organs (aside from in certain situations). The NHS, bound by its finite resources, must assume a utilitarian standpoint in order to meet the health needs of its service users. Thus, adopting an approach to organ donation that is not dissimilar to rule utilitarianism is beneficial, since it has the potential to increase the number of available resources. (In this case ‘resources’ refers to organs, although this may not be the way in which organs are usually considered, but from the perspective of the NHS and the utilitarian this is how they must be viewed.)

However, as independent decision-makers, the perception of what is morally right of many clinicians may differ from that of the utilitarian NHS, often resulting in tensions between the interests of the practitioner and the NHS. This is reflected in interviews conducted by Sque (2000), during which many health professionals expressed a lack of support for organ donation, which contrasted with the views of non-health professionals in the same study, who generally supported organ donation. However, Kim et al (2006) found that although health professionals generally showed support for organ donation, they expressed considerably less support when the idea of donating their own organs was posited.

Informed consent

One ethical issue arising from the implementation of the new scheme is that of informed consent, and whether consent will be truly informed when it is presumed. Informed consent is considered to be gained in both systems; however, both have the potential to lead to donations proceeding against the will of the donor. While the opt-in system yields consent by requiring a definite ‘yes’ answer from either the individual or their family, the opt-out system assumes that the individual has chosen to donate unless they had opted out, although consent is required from the individual's family for the donation to proceed.

Nonetheless, it has been argued that consent will no longer be part of the organ donation process under the new system (Prabhu, 2019). With the opt-in system, consent from the donor is informed, and explicit for both the donor and their family members. A thematic analysis of responses to a questionnaire regarding attitudes to the deemed consent system (Miller et al, 2019) revealed that a common theme among those who were against the new opt-out system was the idea that the opt-in system demands clear and indisputable consent. However, under the opt-out system, despite the fact that it yields consent in the form of choosing not to opt out, there remains concerns that it could lead to some confusion regarding whether a person has actually consented to donating their organs or whether they had not opted out due to their circumstances. For example, the person may not have had an opportunity to opt out, may not have had access to the internet, or may have been unaware of the changes to the system.

Of course, the new legislation includes a policy to safeguard those who are unable to comprehend such changes. This states that, if a person lacks the capacity to understand the changes to the system, then the organ donation will not proceed (BMA, 2021). However it can be difficult to determine whether or not somebody has capacity to understand these changes. Since capacity can fluctuate, it can be difficult to assess whether somebody who is currently capable to understand these changes will have capacity to understand them in the future. A person's ability to understand and retain information can alter due to unforeseen medical events, such as a stroke or the onset of an infection (Mental Health Foundation, 2021). This could mean that some people who do not understand the changes to the system may still have their organs donated or not donated after death, potentially against their will.

Prabhu (2019) stated that under any system, whether it be opt in or opt out, there will always be a number of people whose wishes are not fulfilled. Under an opt-in system there is the risk of willing donors not opting in before death and subsequently not donating their organs, whereas under a presumed consent system there is the possibility that organs will be donated against the will of the donor. However, Prabhu (2019) went on to reference a survey conducted by UK Transplant in 2003, which showed that, while 90% of adults in the UK were open to donating their organs after death, only around 36% were on the organ donor register. Therefore, to assume consent is to assume that the patient falls within the 90% majority and, consequently, implementing a presumed consent system is likely to maximise the preferences of a higher number of potential donors within the UK compared with an opt-in system.

Although the act of taking organs when consent is unclear and potentially uninformed could be considered to be morally wrong, a utilitarian would argue that taking the organs could lead to the best possible outcome whereby a person or multiple people awaiting an organ transplant receive an organ, despite the act itself being deemed ‘taboo’ by some. This action could maximise the preferences of the recipient of the organ or organs, as well as their family and those close to the recipient, since the donation has the potential to improve the recipient's quality of life and possibly even prolong it.

Conversely, Prabhu (2019) argued that patients receiving organs sometimes express fears about receiving organs that were obtained without informed and explicit consent from the donor. If a recipient were to learn that they had received an organ under circumstances where the donor's consent was presumed rather than explicit, then this has the potential to cause some distress in the recipient. Therefore, it could be argued that obtaining organs when consent is only presumed may lead to a poor outcome for the recipient.

A thematic analysis of a questionnaire investigating attitudes to the presumed consent system by Miller et al (2019) made similar conclusions: they found that participants who were in favour of the opt-in system were concerned that their family would become distressed if they thought that the deceased had had no choice in what happened to their organs after death. Although similar to the opt-in system, the deemed consent system also does require approval from relatives. Perhaps public campaigns to raise awareness of this may be needed in order to provide some clarity on this aspect. Since each person's happiness or unhappiness is equal in utilitarianism (Bennett, 2015), the dissatisfaction that could ensue if an organ is donated when consent has not been explicit would need to be considered equally against the potential satisfaction. The theory depends on the idea that only actions that maximise good are morally right, therefore taking organs when consent is ambiguous can be justified only if the action maximises the preferences of the greatest number of people.

Family refusal

Similar to the opt-in system, the ‘soft’ opt-out system includes a safeguard whereby family members are able to refuse donation on behalf of their relative. The purpose of this is to safeguard those who had decided not to donate their organs and had not formally registered their wishes, but had expressed this to family members (DHSC, 2019; BMA, 2021).

The family veto, however, could leave itself open to abuse. According to Miller et al (2019), in countries where the deemed consent system has already been implemented, the family's opinion still has a significant impact on whether organs are donated, despite family members not technically having the authority to refuse donation without proof that the patient had informally disclosed this to them. Miller et al (2019) reported that this is a concern among individuals who were planning not to opt out in the UK: participants in their study articulated fears that family members could refuse following their death, despite this being against their wishes. In some cases, family members may have different values regarding organ donation to those of the patient, which they could then assert following their loved one's death, even if the donor had articulated their intentions not to opt out and explained their willingness to donate their organs after death. The soft opt-out system could allow for the family to project their values and carry out their own wishes, rather than those of the patient. However, this is also the case under the opt-in system, as families ultimately have the final say as to the whether a donation proceeds It would appear that the primary issue in either system is a lack of communication between individuals and their family members. With the new legislation, it is possible that the shift to the opt-out system may act as a catalyst for conversation on the issue among families.

In the view of the Royal College of Nursing (2019), the family's needs are paramount following a bereavement, so it could be argued that their preferences should be taken into consideration since the their preferences are usually a priority following a patient's death, despite this potentially causing tension between meeting the needs of the patient and meeting the needs of the family. The question as to whose preferences are paramount could, however, beg the question of when the health professional's duty of care to a patient ends (ie whether it is when the patient dies or when they leave the practitioner's workload). However, this is a debate that is outside the scope of this particular discussion.

From the perspective of a utilitarian, whether the act of defying the will of the deceased is considered immoral or taboo is irrelevant, if the satisfaction that this brings to the family is greater than that of those who could potentially benefit from the donated organs. Therefore, allowing family members to veto the donor's decision may lead to the best possible outcome if the family's views on organ donation differ from those of the deceased. The laws surrounding the opt-out system dictate that the donation should not proceed if it is considered that it will cause considerable upset to a patient's loved ones (BMA, 2021).

From a utilitarian standpoint, allowing the family to refuse organ donation could maximise the preferences of the family members if going ahead with donation would cause their dissatisfaction. Therefore, it may be that the highest number of people may be satisfied if the family is able to refuse donation, resulting in an outcome whereby the most good had been achieved.

The findings of Shepherd and O'Carroll's (2014) study, which investigated family members' attitudes to deciding whether or not to donate the organs of a family member, revealed that many feared that they would later come to regret their choice, regardless of whether they chose to allow the donation to proceed or not. Allowing relatives to refuse on behalf of the patient could potentially be very stressful for them, so may not produce the most good overall. A key theme among those who support the presumed consent system is the idea of an ‘effortless choice’ (Miller et al, 2019), both for donors and their loved ones. Presuming consent and not allowing the family to veto, therefore, could produce less stress for the family.

In addition, it is likely that in the years following the introduction of the new scheme we will see the development of a culture, within which the donation of organs after death will be accepted as the norm (Bhopal, 2019). This is supported in a review by Ahmad et al (2019), which showed increasing numbers of donation in countries that had made such a change. If this change in attitude were to become the norm, it would likely place the family under less pressure to make a decision, because donating the organs would simply be seen as conforming to societal norms, thus reducing dissatisfaction for those faced with the decision.

Where a family chooses not to go through with the donation, their refusal may go against the preferences of any potential recipients of the organs or tissue. Since each donor has the potential to donate up to six organs, as well as multiple types of tissue (NHS Blood and Transplant, 2021), the consequence is that up to eight recipients and those important to them could potentially benefit from one donor. Therefore, family refusal may result in the dissatisfaction of many potential recipients and those close to them. From a utilitarian perspective, since family refusal could cause the most dissatisfaction for the highest number of people and satisfaction for the least, then the right action would be to adopt a hard opt-out system and donate the organs regardless of the family's wishes.

To maximise the preferences of as many people as possible, and to keep dissatisfaction to a minimum, health professionals involved in organ donation should aim to uphold the law regarding family refusal. Family members should have to provide proof of the deceased's wishes only if they are certain that their loved one had chosen not to donate their organs, and the donation should not proceed if it is evident that it will be too detrimental to the family (BMA, 2021). Upholding this law has the potential to maximise the preferences of the highest number of people and minimise dissatisfaction, thereby potentially leading to the most good overall.

Conclusion

Overall, it seems that implementing the presumed consent system, despite resulting in some disatisfaction, will ultimately produce the most good for a large number of recipients and their families. Many people still have fears surrounding the new scheme, and it seems that more education and support is needed regarding the opt-out system and the organ donation process to alleviate fears of a breach of bodily integrity and to ensure that, although consent is presumed, it remains informed.

The financial cost of continued education on organ donation and the new scheme will of course be high, but it is likely that the benefit it will have on organ donation rates will justify such costs. The DHSC (2019) states that the NHS is addressing this need for education by campaigning for public awareness on the new system, the organ donation process and the demand for organs. Furthermore, NHS efforts to prompt people to converse with their families and openly discuss organ donation and their own wishes, as well as ensure that they are aware of their family members' wishes, will hopefully alleviate some of the concerns surrounding family refusal and will hopefully ensure that there is less confusion regarding the wishes of the deceased.

In the years following the implementation of the optout system, organ donation after death is likely to become considered a societal norm. This could potentially change the way that people view organ donation (Prabhu, 2019), meaning that more organs will become available to those who need them. While it is unlikely that such a change will happen quickly, continued awareness campaigns by the NHS are likely to ensure that the opt-out system will have a positive effect on a great number of lives in the long term.

KEY POINTS

• Utilitarianism aims to maximise the preferences of the greatest number of people
• It is hoped that England's donation rate will increase following the change in legislation, as similar changes have done in countries that have adopted the opt-out system
• Potential recipients have expressed concerns about receiving organs under the new system due to fears that consent may not be explicit or informed
• Some potential donors feel that the family veto leaves itself open to abuse and that their family may not respect their wishes after their death

CPD reflective questions

• As a nurse, how would you go about addressing the subject of organ donation with families?
• How can nurses support their patients during conversations about their wishes and ensure that they are well advocated for?
• Do you think that societal attitudes towards organ donation will shift in light of the opt-out system?