Adopting an opt-out system to improve rates of organ donation

Written by Zoe Hancox

zoe-hancox@outlook.com

  Introduction

Organ donation is a complex but important issue that needs to be addressed. This literature review focuses on an opt-out organ donation system and how this may benefit the current rates of donation. Recurring themes in literature relate to the dramatic increase in organ donation statistics when a country adopts the opt-out system. Another common theme was the implications of families making the decision for the deceased under stressful and emotional circumstances, and how this decreased the number of donors. The literature also looked at the implications of adopting an opt-out system, such as people losing trust in medical professional and the government. Finally, the lack of education has drastic implications on the current rates of donors in New Zealand.  Although the literature mentions these ideas in a variety of contexts, this paper will primarily focus on their application in an opt-out organ donation system. This review will then discuss the clinical implications of adopting an opt-out system; making recommendations and providing a rationale for the future of organ donation in New Zealand.

  The clinical issue

Organ donation is an important practice issue in New Zealand because currently 533 people await an organ donor; every year approximately 50 people will die from the complications of organ failure which could have been avoided if a donor organ had been available (“Organ Donation New Zealand”, n.d.). There are increasing rates of people requiring organ donations due to the ever growing and aging population, and more detrimental lifestyle factors affecting healthy organs (Abouna, 2008). New Zealand’s donation rates remains among the lowest in the developed world, with only 53 deceased donors in 2015, which is unchanged from a decade earlier (“Organ Donation New Zealand”, n.d.). In the international statistics New Zealand donated 10.2 organs per million people in the population, compared to that of Spain donating 36.0 organs per million people, the highest rate in the world (“Organ Donation New Zealand”, n.d.).   The Ministry of Health reported if organs were retrieved from every potential deceased donor, the supply of organs would still fall well short of the demand for them (Soper, 2007).  The disparity between the number of people awaiting organ transplantation and the number of organs available has become a public health crisis. The need remains for innovative ways to increase both deceased and living donor transplants (Salim et al., 2006).

 

Currently New Zealand operates a system where potential donors must indicate their wishes to their family. Donor status is also stated on the New Zealand drivers’ license, although this is merely an indication of people’s wishes. In 2016 53.7% of people holding licenses said they would not donate (New Zealand Transport Agency, 2017). In 2013, only one New Zealand organ donor had indicated their intention on their driver’s license (Ministry of Health, 2016a). Contributing to the lack of donors, only 1% of all deaths occur in circumstances that make it possible for organs to be donated. With New Zealand’s current system, a medical professional in intensive care units will explain to families how organ donation can help someone else who is awaiting an organ, but donation is not an obligation. With familial acceptance organs can then be donated (Ministry of Health, 2016a).

 

I have decided to research organ donation because of the significant financial, physical, and mental health implications for people with organ failure and their families. Organ failure also has significant implications for the rest of the New Zealand population due to the medical costs for these people, with end stage kidney disease requiring 2% of the total health care expenditure. A kidney transplant is better use of the health care funding costing one third of the overall cost of dialysis (Live Kidney Donation Aotearoa, 2013). New Zealand has limited health funding and if we were able to complete more organ transplants the health system would benefit, benefitting the rest of society.

 

The reason I am passionate about increasing rates of organ donation in New Zealand is because many people could have their quality of life improved if people were better educated and prepared to donate their organs. As a nursing student I am interested in organ donation because I hope to make a difference in someone’s life. If I can begin the discussion around organ donation, increasing people’s education, or make more people have the conversation, there is a likelihood that there will be a positive impact on the life of a person awaiting an organ.

  The question

The PECOT model developed by Rod Jackson, was used to develop my research question. PECOT assisted by enabling a critical examination of at each part of the question in order to find relevant literature.

 

Information   relating to question

Explanation

Population

New Zealanders   over the age of 16.

People   of all ages can be considered for donation (“Organ Donation New Zealand”,   n.d.).  I have chosen the population to   be over 16 because this is the current age for choosing to be a donor in New   Zealand and people over the age of 16 are legally considered   adults. At 16 people should be able to make informed decisions   about their well-being (Medical Council of New Zealand, 2011).

Intervention

Using a soft opt-out system or presumed   consent for organ donation

A hard opt-out   register is where people unwilling to   donate are listed, and organs will be used from all others. Where as a   soft opt-out system is where the donors who opt-out are still clearly stated   on a register, but this decision can be overridden by family (Ministry of Health, 2016a). This would   increase the number of donors and would therefore benefit the rest of   society.

Comparison

Compared   to New Zealand currently, and to other countries that use different systems   to New Zealand and whether this is effective.    I have also compared rates of organ donation in New Zealand to France   and Spain because they are currently using an effective opt-out systems.

Australia   and the United Kingdom have many similarities to the New Zealand population,   so when critiquing literature I have used these countries as comparisons.   This is also because there has been limited research in New Zealand   surrounding the topic of organ donation and ways to increase this. Spain has   also been used because they donate the highest number of organs per million   people in their population (“New Zealand Organ Donation”, n.d.).

Outcome

New   Zealand will begin to increase the number of organ donors

 

 

Evidence   proves that the opt-out system as well as education is likely to begin to   increase organ donation (Shepherd et al., 2014).

Time

Not   applicable

Time   is not relevant as the use of an opt-out system will be continuous

(Schneider, Whitehead, LoBiondo-Wood, & Haber, 2013, p44).

 

The PECOT model developed my search question of:

Should New Zealand consider adopting an opt-out system for people over 16 to increase the rate of organ donation?

  Evidence and findings

Rockloff and Hanley (2014), Whyte et al., (2012) and Shepherd et al., (2014) all critique the importance of family being involved in the decision of organ donation and how this impacts the number of donations occurring. The literature looks at the family impact because this is the most drastic factor influencing organ donation. This is because family are often traumatized following the death of a loved one, limiting the possibility of careful consideration of the deceased persons wishes (Whyte et al., 2012). If a strict opt-out system was adopted the family would no longer be able to over-ride this decision, thus increasing the likelihood of more donations. A soft opt-out system is still beneficial as the deceased persons wishes would be on a register so would be clear. It is suggested that obtaining family consent for donations makes non-donation the default option (Rockloff & Hanley, 2014; Shepherd et al., 2014). An opt-out system is likely to improve donation rates both through an attitudinal effect, and by relieving the decision burden on family members that is biased against donation (Rockloff & Hanley, 2014).

 

An opt-out system would be beneficial for situations of distress and grieving that cause family members to not donate their relative’s organs when they might have under other circumstances (Whyte et al., 2012). A strength to Shepherd’s et al., (2014) study is they acknowledge the lack of data on whether countries were using soft or hard opt-out consent, and the limited number of countries available for the analyses, so it remains for further research to be able to generalise distinctions. The implications that introducing an opt-out system would create for nurses is dealing with family and their perceived lack of control surrounding the death and then the collection of organs. Nurses must be aware of the grieving process, as therapeutic communication in this situation is very important. Nurses need to develop a trusting relationship with the grieving family, and need to feel at ease with them so they can communicate openly (Dempsey, Hillege, & Hill, 2014). Nurses must use the New Zealand Nurses Organisation Code of Ethics (2010) to guide their practice, and having an opt-out system raises problems related to failure of such a policy to give appropriate emphasis to autonomy (Whyte et al., 2012).  The principle of autonomy assumes the individual has the understanding and knowledge to make the best choice for themselves (New Zealand Nurses Organisation, 2010).   If an opt-out system is adopted people may assume they have lost the right of autonomy because the legislation is making the decision for them. Nurses must support and empower patients to have freedom of choice and allow them to opt-off the system if they wish (New Zealand Nurses Organisation, 2010).

 

Shepherd et al., (2014) recognise that an opt-out system is not always beneficial and explained that it caused detrimental effects such as mistrust in medical professionals, initially causing a decrease in donation rates in France. Whyte et al., (2012) recognise a weakness in their study is that the research does not look at the reasons people do not agree to donate organs. There is a common misconception that medical professionals will not provide effective care if you are an organ donor (Organ Donation Taskforce, 2008). Medical practitioners are concerned that the relationship of trust between their patients and families may be destroyed by an opt-out system, as it may be perceived as shifting the balance of power in decision-making all to the doctors (Organ Donation Taskforce, 2008). An implication of this power imbalance is that nurses are supposed to be working within the Competencies for Registered Nurses. Competency 3.2 states that nurse’s practice in a negotiated partnership with the health consumer having care that facilitates independence, self-esteem, and safety whilst acknowledging family involvement in the service (Nursing Council of New Zealand, 2012). The nurse may not acknowledge the family’s perspective in the decision about the deceased organs in a strict opt-out system and shows they are not nursing to a standard that protects public safety. An implication for nurses if an opt-out system was developed could be the effect of this mistrust, making their role difficult and may influence the outcomes for patients in all areas of health not just related to organ donation (Bramhall, 2011). This power imbalance and mistrust may also increase stress in the work place and lead to higher levels of burnout from nurses (Laschinger, Almost, & Tuer-Hodes, 2003).

 

The literature discusses the use of legislation to make societal changes. Every society has developed notions of what is right behaviour, and these notions often become legislation, reflecting the values of society (Keenan, 2010). It is recognised that the wish to not donate organs are caused by personal beliefs that cannot be easily changed, although laws that influence behavior can change norms over time (Rockloff & Hanley, 2014; Parker, 2014). If an opt-out system is legislated it will begin to change society’s views on organ donation and eventually change social norms and therefore people’s values and beliefs. Interestingly, it has been acknowledged that legislation is unlikely to play an immediate role in increasing organ donation. This is recognised because it took 10 years to see any rise in Spanish organ donation levels, following the adoption of further adaptions to their system (Shepherd, et al., 2014). This statement creates concerns for the introduction of legislation to adopt an opt-out system, as it may create many other issues and may not be as beneficial as we have been lead to believe by other studies. Creating this legislation may also cause a public backlash against government intrusion into people’s lives (Whyte et al., 2012). A number of people in the study by the Organ Donation Taskforce (2008) believed that donation rates might go down, due to people resenting government interference. Whyte et al., (2012) therefore recognise that government regulation is not the best approach for correcting problem areas. They then suggest a system of mandated choice, where the decision you make about organ donation is the final decision and it cannot be changed; this still brings issues of family consent. An implication of introducing legislation for an opt-out system is that there will have to be changes to many other legislative documents such as a revision to the Human Tissue Act to state the changes to the current system (Organ Donation Taskforce, 2008). The Organ Donation Taskforce (2008) recognise that an opt-out system that did not seek the opinion from families about the deceased’s own opinions or wishes could be considered going against peoples’ rights. Again it challenges the Competencies for Registered Nurses because Competency 1.1 is that nurses must meet the standards of the professional, ethical and relevant legislated requirements (Nursing Council of New Zealand, 2012). Nurses may then be accused of ignoring the rights of the patient if it is believed they wished to opt-out. This becomes a complicated issue because it questions the competence of the nurse and puts their practicing certificate at risk.

 

Another way the literature suggests to increase organ donation is by further education. A lack of knowledge about organ donation is often reported as a barrier to registering and discussing the donation decision. There is an erroneous a belief that most Western groups do not support organ donation (Hyde & White, 2007). This suggests that the knowledge deficits surrounding organ donation still remain as a barriers and should continue to be future targets for intervention (Hyde & White, 2007). None of the literature had evidence to suggest education alone had improved rates without any other changes being adapted. Although evidence suggests that raising public awareness may be as likely as registers to increase family discussions about donation, and may be more cost effective for increasing organ donation rates (Ministry of Health 2016b). From the literature it has been shown that nurses should focus on educating young people to have the biggest effect on organ donation rates, because young people tend to engage in high-risk behaviors so are more likely to have the opportunity to donate (Rockloff & Hanley, 2013).  Young people are already persuaded by altruistic messages therefore to increase registration rates nurses develop other ways to encourage people to stay on the opt-out system (Hyde & White, 2007).   Education should not only be used for the public but for medical staff.  Opdam (2006) found that a key focus was communication training for staff who participated in conversations with families about the opportunity for donation. This was reiterated by a Spanish study that found 78% of families that declined to have their relative’s organs donated, changed their minds after an explanation of the process, which shows the importance of education and having appropriately trained medical professionals (Spooner, 2003).

  Recommendations

The recommendation after critiquing the literature is that New Zealand should adopt a soft opt-out system allowing doctors to remove organs from every deceased adult– unless the person opted out of the register, but the doctors will still consult with the relatives for their agreement at the time of death (Organ Donation Taskforce, 2008). Consulting the family removes difficult ethical issues. Having a soft opt off system was considered positive by the ethics committee in the Organ Donation Taskforce study (2008) because the benefit it provides to society outweighed the negative principles of the system. If New Zealand adopted this policy it would need to be closely monitored to see why people were opting off and any adaptions made.

 

The rationale for recommending the opt-out system is because it uses a default setting of donating so that inertia works with, rather than against, people’s preferences, and family member bias may be excluded from influencing the decisions (Shepherd et al., 2014; Whyte et al., 2012). To validate this, 42% of people would choose to be organ donors under an opt-in scheme, while only 18% would opt out if their consent was presumed, leaving 82% of the population donating (Whyte et al., 2012). There is an assumption that people would opt out if they did not wish to donate their organs, the Organ Donation Taskforce (2008) acknowledged that this assumption is not supported by evidence. The reason I believe an opt-in system is ineffective is because people often have the intention to register to be an organ donor or to discuss their wishes with their families, but the intention often does not lead to action (Griffin & Tengnah, 2009).

 

Literature suggests that countries with the highest rates of organ donors is due to several influential factors not merely due to the opt-out system (Shepherd, et al., 2014; Zúñiga-Fajuri, 2015). Australia increased its deceased donor rate by 41% from 2009-2014 by increasing their network of donation specialists and clinical training, increasing infrastructure and awareness of organ donation by improving education; instead of making any changes to their consent system (Ministry of Health, 2016c). New Zealand could use this research to make other adaptions to its organ donation system.

 

Along with adopting an opt-out system New Zealand should educate about organ donation. This would have to occur as a legal right to explain how the system will work, whilst generally educating people about the importance of organ donation. A lack of information would disadvantage those who wished to opt out but did not know how to do so, which could lead to legal challenges in the future (Organ Donation Taskforce, 2008). My recommendation from this information is that New Zealand will put further funding into other systems such as advertising to increase knowledge and general awareness. There should also be more funding to improve education for medical professionals so they can encourage family members to donate.

  Conclusion

With New Zealand having one of the lowest rates of organ donation in the world, it highlights the need for urgent changes to be made. Evidence suggests that adopting an opt-out system would be effective to increase deceased donor rates. There are implications of this system such as mistrust in the health system and government and potential to cause more stress for families. Education is another way along with the opt-out system that rates could be increased. My recommendation is New Zealand adopts an opt-out policy with education for all ages, and that this policy is closely monitored.

  References

Abouna, G. M. (2008). Organ shortage crisis: Problems and possible solutions. Transplantation Proceedings, 40(1), 34-38. Retrieved from  https://www.ncbi.nlm.nih.gov/pubmed/18261540

 

Bramhall, S. (2011). Presumed consent for organ donation: A case against. Annals of the Royal College of Surgeons England, 93, 268-272.  Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3363073/

 

Dempsey, J., Hillege, S., & Hill, R. (2014). Fundamentals of nursing and midwifery: A person-centered approach to care (2nd ed.).Sydney, Australia: Lippincott Williams & Wilkins.

 

Griffin, R., & Tengnah, C. (2009). Consent to organ donation: The current arrangements. British Journal of Community Nursing, 14(12), 544-547. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/20216500

 

Hyde, M. K., & White, K. M. (2007).   Young Australian adults’ knowledge about beliefs about organ donation. Progress in Transplantation, 17(3), 220-227. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/17944162

 

Keenan, R. (2010). Healthcare and the law (4th ed.) Wellington, New Zealand: Brookers Ltd.

 

Laschinger, H. K., Almost, J., & Tuer-Hodes, D. (2003). Workplace empowerment and magnet hospital characteristics: Making the link. Journal of Nursing Administration, 33(8), 410-422.

 

Live Kidney Donation Aotearoa. (2013). Centre for clinical research and effective practice. Retrieved from http://kidneydonor.org.nz/

 
Medical Council of New Zealand (2011).  Information, choice of treatment and informed consent. Retrieved from https://www.mcnz.org.nz/assets/News-and-Publications/Statements/Information-choice-of-treatment-and-informed-consent.pdf 

 

Ministry of Health. (2016a). Background information on organ donation and transplantation in New Zealand. Retrieved from http://www.health.govt.nz/our-work/hospitals-and-specialist-care/review-deceased-organ-donation-and-transplantation

 

Ministry of Health. (2016b). Discussion paper: Registers for deceased organ donation. Retrieved from http://www.health.govt.nz/our-work/hospitals-and-specialist-care/review-deceased-organ-donation-and-transplantation

 

Ministry of Health. (2016c). Summary of international examples of organ donation reform programmes. Retrieved from http://www.health.govt.nz/our-work/hospitals-and-specialist-care/review-deceased-organ-donation-and-transplantation

 

New Zealand Nurses Organisation (2010). Code of Ethics. Wellington, New Zealand: Author.

 

New Zealand Transport Agency. (2017). Organ and Tissue Donation. Retrieved from https://www.nzta.govt.nz/driver-licences/getting-a-licence/organ-and-tissue-donation/

 

Nursing Council of New Zealand. (2012). Competencies for registered nurses. Wellington, New Zealand: Author.

 

Opdam, H. (2016). Increasing organ and tissue donation for transplantation. Transplant Journal of Australasia, 25(1), 6-8.

 

Organ Donation New Zealand: New Zealand’s official donor agency. (n.d.). Retrieved from the Organ Donation New Zealand website http://www.donor.co.nz/

 

Organ Donation Taskforce. (2008). The potential impact of an opt out system for organ donation in the UK. Retrieved from http://www.nhsbt.nhs.uk/to2020/resources/ThepotentialimpactofanoptoutsystemfororgandonationintheUK.pdf

 

Parker, C. B. (2014). Laws may be ineffective if they don’t reflect social norms, Stanford scholar says. Stanford Report. Retrieved from http://news.stanford.edu/news/2014/november/social-norms-jackson-112414.html

 

Rockloff, M., & Hanley, C. (2014). The default option: Why a system of presumed consent may be effective at increasing rates of organ donation. Psychology, Health and Medicine, 19(5), 580-585. doi: /10.1080/13548506.2013.841967

 

Salim, A., Martin, M., Brown, C., Rhee, P., Demetriades, D., & 
Belzberg, H. (2006). The effect of a protocol of aggressive donor management: Implications for the national organ donor shortage. Journal of Trauma and Acute Care Surgery, 61(2), 429–433.

 

Schneider, Z., Whitehead, D., LoBiondo-Wood, G., & Haber, J. (2013). Nursing and midwifery research methods and appraisal for evidenced-based practice (4th ed.). Sydney, NSW: Mosby.

 

Shepherd, L. O’Carroll, R. E., & Ferguson, E. (2014). An international comparison of deceased and living organ donation/transplant rates in opt-in and opt-out systems: A panel study.  BioMedicine Central Limited. doi: 10.1186/s12916-014-0131-4


 

Soper, L. (2007). New Zealand Parliament: Hansard (debates). Retrieved from https://www.parliament.nz/en/pb/hansarddebates/rhr/document/48HansS_20071023_00001152/soper-lesley-human-tissue-bill-second-reading

 

Spooner, M. (2003). More countries hoping to copy Spain's organ-donation success. Canadian Medical Association Journal, 169(9), 952. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC219643/

 

Whyte, K. P., Selinger, E., Caplan, A. L., & Sadowki, J. (2012). Nudge, nudge or shove, shove: The right way for nudges to increase the supply of donated cadaver organs. The American Journal of Bioethics, 12(2), 32-39. doi: 10.1080/15265161.2011.634484

 

Zúñiga-Fajuri, A. (2015). Increasing organ donation by presumed consent and allocation priority: Chile. Bulletin World Health Organization, 99, 199-202. doi: http://dx.doi.org/10.2471/BLT.14.139535