Organ and Tissue Donation - Policy Document - Australian Medical Students ...
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Policy Document Organ and Tissue Donation Background The Australian Medical Student Association (AMSA) is the peak body representing medical students in Australia. As such, AMSA advocates on a range of issues impacting the nation’s health. Introduction Organ and tissue transplantation are life-saving treatments for a range of illnesses. Organs and tissue may be donated from living or deceased donors. One deceased donor may improve the lives of more than ten people living with disabling diseases by donating organs such as: kidneys, liver, lungs, heart, pancreas and eyes; or tissues such as: skin, musculoskeletal and cardiac tissues [1]. The national DonateLife Network was established in 2009 by Australian state and federal governments as a central organisation to set standards, allocate organs and support local retrieval arrangements [2]. In 2018, 1,544 organs were received from 554 deceased donors [3]. Whilst the number of deceased donors has increased by 124% since 2009, the demand for organs still outstrips availability [1]. At any time, approximately 1,400 Australians are awaiting an organ transplant [4]. Significantly more would benefit from transplant, but do not meet eligibility criteria to receive an organ immediately [5, 6]. Waiting times for a donation vary between different organs. Those needing a liver wait an average of 58 days, but can wait anywhere up to 5.25 years, whilst people on the waiting list for a kidney wait an average of 2.2 years, with some remaining on the list for up to 3.6 years before transplant [5, 6]. For deceased donation to be possible, brain or circulatory death must occur under specific circumstances, maintaining sufficient organ function [7]. In 2017, less than 2% of deaths in- hospital occurred in appropriate circumstances for donation to proceed [1]. Following death, requests for organ donation are made to the family, who make the final decision based on the deceased’s known wishes, or their values and beliefs if wishes are unknown. Of the 1,093 requests for organ donation that were made in 2017, only 642, or less than 60%, were consented to [1]. Low rates of familial consent are often attributed to uncertainty surrounding the deceased’s wishes regarding organ donation. Surveys show that 69% of Australians support donating their own organs, however, only 51% have discussed this with their families [4]. Where Australians are aware of their family members’ wishes, 93% report they would uphold them [4]. Thus, encouraging family discussions of people’s wishes regarding organ donation is critical to improving rates of donation. Current System Australia currently uses an ‘opt-in’ model of consent for organ donation, where people are required to register with the Australian Organ Donor Register and communicate their wishes to their family. A legally valid registration of consent occurs when an individual records their decision with the Australian Organ Donor Register only, via an online or signed registration form. Expressing an intent to register elsewhere, such as on a driver’s license, is not recognised as consent [8]. As of December 2018, 4,285,591 people had recorded an intent to register, however only 2,383,551 of those had followed through to complete the consent process with the Australian Organ Donation Register (55.6%) [9]. Improving our current system involves raising awareness and educating health professionals to better support organ donation processes. The Opt-out System In an ‘opt-out’ system, consent to donating organs is presumed unless an objection has been registered. In countries that have adopted a ‘soft’ opt-out consent system, donation cannot take place without the consent of family members. By contrast, in countries that have adopted a
‘hard’ opt-out consent system, organs can be transplanted from anyone who has not registered their express opposition to donation, without the need for consent from family members [10]. Several international studies have shown increases in donor rates of 25-30% following transition to an opt-out system [11, 12]. The observed increase in donation rates cannot be isolated from confounding factors such as increased awareness of organ donation surrounding the transition from opt-in to opt-out, and other concurrent legislative changes [13]. However, when accounting for these factors and other covariates, such as Gross Domestic Product (GDP), road traffic accident mortality, hospital beds, and percentage of Catholics, it has been illustrated that countries with opt-out models of consent have statistically greater total number of kidney and liver donations compared to opt-in countries [10]. Reviews by the state governments of Western Australia [14], Queensland [15], and Tasmania [16] have highlighted the benefits of an opt-out model but have been reticent in their support, citing concerns of resistance from a minority of the community, or inadequate evidence of benefit. In Victoria, following a trial by the Royal Melbourne Hospital, health services have adopted a policy of ‘automatic assessment’, whereby all patients nearing end of life are referred to DonateLife specialists to be assessed as to whether they are suitable organ donors, regardless of their status on the donation register. If deemed suitable, doctors will approach the patient and their family to discuss organ donation prior to their death. The Victorian Government expects a 10% increase in donors as a result of this policy [17]. Benefits of Organ Donation Increasing organ donation rates of those who are eligible would improve the function, quality of life, and chances of survival for those on the waiting list [18]. Furthermore, organ transplantation is of economic benefit, as it is a cost-effective treatment when compared to the costs of other treatments for end-stage organ failure. Along with improved quality of life, renal transplantation is consistently more cost-effective than dialysis in a number of countries [19-22]. Prevalence and the financial impact of chronic kidney disease (CKD) is projected to increase in Australia by 2020 [23], necessitating greater use of more cost-effective treatments. Modelling by Kidney Health Australia indicates that increasing the 2010 kidney donation rate by 10% could save up to $14 million in end-stage kidney disease management out to 2020 [24]. Organ Trafficking Lack of organ availability has led to the commercialisation of organs in some parts of the world, where donors are financially compensated. ‘Transplant tourism’, where organs, most commonly kidneys, are bought and sold, are an important part of the medical economies in several countries, including Peru, South Africa, India, the Philippines, Iraq, and China [25]. It has been reported that a small number of Australian patients have travelled overseas to purchase organs, as this practice is illegal in Australia [26]. It is unknown whether the donors involved consented to these procedures, or received any of the fee paid by the recipient. Monetisation of organ and tissue donation is mired in a myriad of ethical concerns [25], which are beyond the scope of this policy. However, aside from ethical concerns, this practice is associated with medical concerns for both donors and recipients. These include developing hypertension and renal insufficiency in donors [25], and an increased risk of developing infections with pathogens such as human immunodeficiency virus (HIV), hepatitis B virus (HBV), cytomegalovirus (CMV), and funguses in recipients [26]. Selling and buying of organs and tissues is not condoned by National Health and Medical Research Council (NHMRC) [27] and World Health Organization (WHO) [28] guidelines. Role of Education in Organ Donation The education of health professionals and medical students on the issue of organ and tissue donation is vital for its efficiency and effectiveness. Lack of educational programs on organ donation and transplantation has been shown to be one of the reasons for the shortage of organ donations [29]. The International Federation of Medical Students’ Associations (IFMSA) calls upon medical associations to ‘support physician training on donation’ and to ‘promote donation awareness among the local population through physician initiatives’ [30] to partly address the issues surrounding organ donation. Data from DonateLife also support that training of health professionals in organ donation increases family consent rates: in 2018, 75% of families consented to organ donation when a trained doctor or nurse was involved in the process, compared to 45% of families consenting when a trained doctor or nurse was not involved [3]. Furthermore, including education on organ donation and transplantation in medical curriculums would allow medical students to disseminate information on organ and tissue donation to their family and friends [29], and counsel future patients. This would help foster a positive attitude towards the issue in the general public, and thus, lead to higher rates of organ and tissue donation.
Position Statement AMSA believes that: 1. Organ and tissue transplantation is an effective, economical treatment for a number of conditions that is critical for improving patient health; 2. There is significant potential to increase the current donor rate in Australia; 3. A soft ‘opt-out’ model of consent would increase the rate of organ donation; a. A soft ‘opt-out’ model is one where consent is presumed unless otherwise documented by the patient and/or family 4. Organ and tissue donation should be centred on the following ethical principles (based on NHMRC [27] and WHO [28] guidelines): a. Donation is altruistic; b. The donor and their family must consent to the removal of their organs and tissues; if no family is available to provide consent, donation should not proceed; c. The choice not to donate is respected, including the right to change a donation choice; d. The wishes of the next of kin not to donate the deceased’s organs or tissues is respected; e. The needs of the donor take precedence over organ procurement; f. Organs and tissues are allocated fairly, without regard to gender, ethnicity, religion, sexual identity or lifestyle, except where this may reduce the likelihood of a positive outcome; g. The recipient consents to transplantation; h. The privacy and confidentiality of donors and recipients is respected; i. In the case of deceased donation, death has occurred following irreversible cessation of brain function or circulation of blood; j. There is a separation of roles between the teams involved in caring for the donor and the recipient; k. There are to be no practices of advertising, soliciting, or brokering for the purpose of transplant commercialism, organ trafficking, or transplant tourism. Policy AMSA calls upon: 1. Australian governments to: a. Adopt a soft ‘opt-out’ model of consent; i. Ensure roll out is inclusive of all patient demographics b. Continue to support the efforts of DonateLife in: i. Increasing awareness of the benefits of organ donation for individuals and the community; ii. Encouraging people to consider their willingness to register for organ, tissue and bone marrow donation; iii. Encouraging family discussions of relatives’ intentions regarding organ and tissue donation; iv. Targeting these campaigns towards a diverse range of populations, including older adults, and culturally and linguistically diverse subpopulations; v. Addressing the disparity between intent and legally valid consent registration c. Institute a simplified, easily accessible way for individuals to electronically register their wishes, and notify family and/or loved ones of these wishes. 2. Medical students to: a. Consider their willingness to register as an organ and tissue donor and to discuss this with their families; and b. Promote organ, tissue and bone marrow donation 3. Medical Student Societies to:
a. Support and participate in educational and promotional campaigns that advocate for organ donation, such as DonateLife week 4. Australian medical schools to: a. Provide appropriate training of medical students in: i. Understanding the ethical issues of organ donation, including the need to promote organ donation while ensuring informed and voluntary consent; ii. Discussing organ and tissue donation with their patients and other stakeholders involved; and iii. Making donation requests in a sensitive and timely manner. 5. All Australians to: a. Consider their willingness to register as an organ and tissue donor, and to discuss their wishes with their family. 6. Hospitals and health systems to: a. Ensure that their processes facilitate ethical donations, and that appropriately trained staff are available to undertake procedures and support families. b. Provide continued support and services for doctors and health professionals to ensure they are equipped with the skills in handling end of life discussions. i. Provide education to doctors and health professionals regarding end of life services currently available and clarify their role in the organ donation process c. Implement educational support and an assessment system to ensure doctors are well-informed of assessing patients who are viable organ donors. References [1] Organ and Tissue Authority. 2017 Australian donation and transplantation activity report [Internet]. Canberra: Organ and Tissue Authority; 2018 [cited 2019 Feb 06]; 11 p. Available from: https://donatelife.gov.au/sites/default/files/2017%20Australian%20Donations%20and% 20Transplantation%20Activity%20Report.pdf [2] DonateLife Network. DonateLife Network [Internet]. Canberra: Organ and Tissue Authority; 2018 [cited 2019 Feb 12]; Available from: http://www.donatelife.gov.au/about-us/ donatelife- network [3] Organ and Tissue Authority. 2018 Organ donations and transplantation outcomes [Internet]. Canberra: Organ and Tissue Authority; 2019 [cited 2019 Feb 06]; 2 p. Available from: https://donatelife.gov.au/sites/default/files/2018_organ_donations_and_ transplantation_outcomes.pdf [4] DonateLife Network. Facts and statistics [Internet]. Organ and Tissue Authority; 2018 [cited 2019 Feb 02]; Available from: https://donatelife.gov.au/about-donation/get-facts/ facts-and- statistics [5] Australia & New Zealand Dialysis & Transplant Registry. ANZDATA registry 41st annual report chapter 6: Australian transplant waiting list [Internet]. Adelaide: Australia & New Zealand Dialysis & Transplant Registry; 2018 [cited 2019 Feb 05]; 7 p. Available from: http://www.anzdata.org.au/v1/report_2018.html [6] Lynch SV, Balderson GA (editors). ANZLT registry report 2017 [Internet]. Brisbane: Australia and New Zealand Liver Transplant Registry; 2018 [cited 2019 Feb 05]; 72 p. Available from: https://www3.anzltr.org/wp-content/uploads/Reports/29thReport.pdf [7] DonateLife Network. The donation process [Internet]. Canberra: Organ and Tissue Authority; 2018 [cited 2019 Feb 12]; Available from: https://donatelife.gov.au/about-donation/ donation- process [8] Department of Health. The Australian organ donation register [Internet]. Canberra: Commonwealth of Australia; 2018 [cited 2019 Feb 13]; Available from: http://www.health.gov. au/internet/main/publishing.nsf/Content/health-organ-aodr.htm
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[22] Perovic S, Jankovic S. Renal transplantation vs hemodialysis: cost-effectiveness analysis. Vojnosanit Pregl. 2009 Aug;66(8):639-44. [23] Tucker PS, Kingsley MI, Morton RH, Scanlan AT, Dalbo VJ. The increasing financial impact of chronic kidney disease in Australia. Int J Nephrol [Internet]. 2014 [cited 2019 Feb 06];2014:120537. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3995178/ doi: 10.1155/2014/120537 [24] Cass A, Chadban S, Gallagher M, Howard K, Jones A, McDonald S, et al. The economic impact of end-stage kidney disease in Australia: projections to 2020 [Internet]. Sydney: Kidney Health Australia; 2010 [cited 2019 Feb 06]. 66 p. Available from: https:// kidney.org.au/cms_uploads/docs/kha-economic-impact-of-eskd-in-australia-projections- 202.pdf [25] Scheper-Hughes N. Keeping an eye on the global traffic in human organs. Lancet [Internet]. 2003 [cited 2019 Feb 06];361(9369):1645-8. Available from: https://eds-a- ebscohost- com.ezp.lib.unimelb.edu.au/eds/detail/detail?vid=2&sid=089d11e2-10d9-4431-8171- 5da44210c815%40sdc-v- sessmgr04&bdata=JnNpdGU9ZWRzLWxpdmUmc2NvcGU9c2l0ZQ%3d%3d#AN=9709252&d b=bth doi: 10.1016/S0140-6736(03)13305-3 [26] Kennedy SE, Shen Y, Charlesworth JA, Mackie JD, Mahony JD, Kelly JJ, et al. Outcome of overseas commercial kidney transplantation: an Australian perspective. Med J Aust. 2005;182(5):224-7. [27] National Health and Medical Research Council. Organ and tissue donation by living donors [Internet]. Canberra: National Health and Medical Research Council; 2007 [cited 2019 Feb 06]. 75 p. Available from: https://nhmrc.gov.au/about-us/publications/organ-and- tissue-donation-living-donors#block-views-block-file-attachments-content-block-1 [28] World Health Organization. WHO guiding principles on human cell, tissue and organ transplantation [Internet]. Geneva: World Health Organization; 2010 [cited 2019 Feb 06]. 9 p. Available from: https://www.who.int/transplantation/Guiding_PrinciplesTransplantation_ WHA63.22en.pdf?ua=1 [29] Radunz S, Benko T, Stern S, Saner FH, Paul A, Kaiser GM. Medical students’ education on organ donation and its evaluation during six consecutive years: results of a voluntary, anonymous educational intervention study. Eur J Med Res [Internet]. 2015 [cited 2019 Feb 06];20(1):23. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4359403/ doi: 10.1186/s40001-015-0116-6 [30] International Federation of Medical Students’ Associations. IFMSA policy statement: organ, tissue and marrow donation and transplantation [Internet]. Puebla (MX): International Federation of Medical Students’ Associations; 2016 [cited 2019 Feb 06]. 4 p. Available from: http://ifmsa.org/wp-content/uploads/2016/09/2016AM_PS_OrganDonation.pdf Policy Details Name: Organ and Tissue Donation (2019) Category: Category: F - Public Health in Australia History: Reviewed and Adopted, Council 1, 2019 Grace Newman (Co-lead Author), Jason Ong (Co-lead Author), Srishti Dhir, Anant Butala, Sophie He, Stephanie Lee, Daniel Zou (Policy Officer) Reviewed and Adopted, Council 2, 2015 Adopted, Council 2, 2012
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