The authority of next-of-kin in explicit and presumed consent systems for deceased organ donation: an analysis of 54 nations.
Ontology highlight
ABSTRACT: Background
The degree of involvement by the next-of-kin in deceased organ procurement worldwide is unclear. We investigated the next-of-kin's authority in the procurement process in nations with either explicit or presumed consent.Methods
We collected data from 54 nations, 25 with presumed consent and 29 with explicit consent. We characterized the authority of the next-of-kin in the decision to donate deceased organs. Specifically, we examined whether the next-of-kin's consent to procure organs was always required and whether the next-of-kin were able to veto procurement when the deceased had expressed a wish to donate.Results
The next-of-kin are involved in the organ procurement process in most nations regardless of the consent principle and whether the wishes of the deceased to be a donor were expressed or unknown. Nineteen of the 25 nations with presumed consent provide a method for individuals to express a wish to be a donor. However, health professionals in only four of these nations responded that they do not override a deceased's expressed wish because of a family's objection. Similarly, health professionals in only four of the 29 nations with explicit consent proceed with a deceased's pre-existing wish to be a donor and do not require next-of-kin's consent, but caveats still remain for when this is done.Conclusions
The next-of-kin have a considerable influence on the organ procurement process in both presumed and explicit consent nations.
SUBMITTER: Rosenblum AM
PROVIDER: S-EPMC3363979 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:Legislation, in the form of presumed consent, has been argued to boost organ donation but most evidence disregards the practice of seeking relative's consent, which can either 'veto' donation decisions, or 'legitimize them', by removing any possible conflict with the donor's family. We study the effect of presumed consent alongside family consent on individuals' willingness to donate (WTD) one's own and relatives' organs, and on actual organ donation behaviours. Using data from 28 European countries for the period 2002-2010, we found that presumed consent (PC) policies are associated with increased willingness to donate organs, but this effect was attenuated once internal family discussions on organ donation were controlled for. Our findings indicate that relative's consent acts as a veto of donation intentions and attenuates the effect of regulation on actual donations. More specifically, PC increases WTD one's own and relatives' organs in countries where no family consent is required. Consistently, we find that family consent attenuates the influence of regulatory environment on actual donations. The effect is driven by the influence of family discussions which increased WTD, and in combination with presumed consent translated into higher organ donation rates.
| S-EPMC7822792 | biostudies-literature
Project description:BackgroundPosthumous organ procurement is hindered by the consenting process. Several consenting systems have been proposed. There is limited information on public relative attitudes towards various consenting systems, especially in Middle Eastern/Islamic countries.MethodsWe surveyed 698 Saudi Adults attending outpatient clinics at a tertiary care hospital. Preference and perception of norm regarding consenting options for posthumous organ donation were explored. Participants ranked (1, most agreeable) the following, randomly-presented, options from 1 to 11: no-organ-donation, presumed consent, informed consent by donor-only, informed consent by donor-or-surrogate, and mandatory choice; the last three options ± medical or financial incentive.ResultsMean(SD) age was 32(9) year, 27% were males, 50% were patients' companions, 60% had???college education, and 20% and 32%, respectively, knew an organ donor or recipient. Mandated choice was among the top three choices for preference of 54% of respondents, with an overall median[25%,75%] ranking score of 3[2,6], and was preferred over donor-or-surrogate informed consent (4[2,7], p?<?0.001), donor-only informed consent (5[3,7], p?<?0.001), and presumed consent (7[3,10], p?<?0.001). The addition of a financial or medical incentive, respectively, reduced ranking of mandated choice to 7[4,9], p?<?0.001, and 5[3,8], p?<?0.001; for donor-or-surrogate informed consent to 7[5,9], p?<?0.001, and 5[3,7], p?=?0.004; and for donor-only informed consent to 8[6,10], p?<?0.001, and 5[3,7], p?=?0.56. Distribution of ranking score of perception of norm and preference were similar except for no-organ donation (11[7,11] vs. 11[6,11], respectively, p?=?0.002). Compared to females, males more perceived donor-or-surrogate informed consent as the norm (3[1,6] vs. 5[3,7], p?<?0.001), more preferred mandated choice with financial incentive option (6[3,8] vs. 8[4,9], p?<?0.001), and less preferred mandated choice with medical incentive option (7[4,9] vs. 5[2,7], p?<?0.001). There was no association between consenting options ranking scores and age, health status, education level, or knowing an organ donor or recipient.ConclusionsWe conclude that: 1) most respondents were in favor of posthumous organ donation, 2) mandated choice system was the most preferred and presumed consent system was the least preferred, 3) there was no difference between preference and perception of norm in consenting systems ranking, and 4) financial (especially in females) and medical (especially in males) incentives reduced preference.
| S-EPMC3519501 | biostudies-literature
Project description:Background: Organ shortage is still a world-wide problem, resulting in long waiting lists for kidney, liver, and heart transplant candidates across many transplant centers globally. This has resulted in the move toward presumed consent to increase deceased organ donation rates. However, there remains a paucity of literature on public attitude and barriers regarding the opt-out system, with existing studies limited to Western nations. Therefore, this study aimed to understand public sentiment and different barriers toward organ donation from the perspective of Singapore, a highly diverse and multiethnic Asian society. Methods: A cross-sectional community semi-structured interview was conducted in a public housing estate in Singapore. Pilot test was undertaken before participants were interviewed face-to-face by trained personnel. All statistical evaluations were conducted using Stata. The χ2-test compared subgroups based on patient characteristics while multivariable logistic regression identified predictors of willingness to donate/ assent. Effect estimates were quantified using odds ratio (OR). Findings: Out of 799 individuals, 85% were agreeable to organ donation after death and 81% were willing to assent to donations of family members' organs, which declined by 16% (p < 0.001) after a clinical scenario was presented. Demographic factors including ethnicity, education, marital, and employment status affected willingness to donate and assent. Knowledge correlated significantly with willingness to donate and assent. In particular, knowledge regarding brain death irreversibility had the strongest correlation (AOR 2.15; 95% CI 1.60-2.89). Conclusions: Organ donation rates remain low albeit presumed consent legislation, due to patient-level barriers, including but not limited to knowledge gaps, cultural values, religious backgrounds, and emotional impact at relatives' death. To effectively boost donor rates, it is crucial for policy makers to invest in public education and improve transplant provisions and family protocols.
| S-EPMC8525798 | biostudies-literature
Project description:Nova Scotia, Canada is the first jurisdiction in North America to pass deemed consent legislation for organ donation. Individuals medically suitable to be deceased organ donors are considered to have authorised post-mortem organ removal for transplantation unless they opt out of the system. While governments do not have a legal duty to consult Indigenous nations before passing health legislation, this does not diminish Indigenous interests and rights in relation to the legislation. This analysis discusses impacts of the legislation, specifically intersectionality with Indigenous rights, trust in the healthcare system, transplant inequities, and distinctions-based health legislation. How governments engage Indigenous groups about the legislation is yet to unfold. Consultation with Indigenous leaders and engagement and education of Indigenous peoples is, however, key to moving forward legislation that respects Indigenous rights and interests. What happens in Canada is being watched globally, as deemed consent is debated as a solution to organ transplant shortages.
| S-EPMC9950653 | biostudies-literature
Project description:ObjectiveFor various reasons, people of Chinese (China, Hong Kong or Taiwan) and South Asian (Indian subcontinent) ancestry (the two largest ethnic minority groups in Ontario, Canada) may be less likely to register for deceased organ donation than the general public, and their families may be less likely to consent for deceased organ donation at the time of death.MethodsWe conducted two population-based studies: (1) a cross-sectional study of deceased organ donor registration as of May 2013, and (2) a cohort study of the steps in proceeding with deceased organ donation for patients who died in hospital from October 2008 to December 2012.ResultsA total of 49 938 of 559 714 Chinese individuals (8.9%) and 47 774 of 374 291 South Asians (12.8%) were registered for deceased organ donation, proportions lower than the general public (2 676 260 of 10 548 249 (25.4%). Among the 168 703 Ontarians who died in a hospital, the families of 33 of 81 Chinese (40.1%; 95% CI: 30.7%-51.6%) and 39 of 72 South Asian individuals (54.2%; 95% CI: 42.7-65.2%) consented for deceased organ donation, proportions lower than the general public (68.3%; 95% CI: 66.4%-70.0%).ConclusionsIn Ontario, Canada Chinese and South Asian individuals are less likely to register and their families are less likely to consent to deceased organ donation compared to the remaining general public. There is an opportunity to build support for organ and tissue donation in these two large ethnic communities in Canada.
| S-EPMC4521812 | biostudies-literature
Project description:The variability in deceased organ donation registries worldwide has received little attention. We considered all operating registries, where individual wishes about organ donation were recorded in a computerized database. We included registries which recorded an individual's decision to be a donor (donor registry), and registries which only recorded an individual's objection (non-donor registry). We collected information on 15 characteristics including history, design, use and number of registrants for 27 registries (68%). Most registries are nationally operated and government-owned. Registrations in five nations expire and require renewal. Some registries provide the option to make specific organ selections in the donation decision. Just over half of donor registries provide legally binding authorization to donation. In all national donor registries, except one, the proportion of adults (15+) registered is modest (<40%). These proportions can be even lower when only affirmative decisions are considered. One nation provides priority status on the transplant waiting list as an incentive to affirmative registration, while another nation makes registering a donation decision mandatory to obtain a driver's license. Registered objections in non-donor registries are rare (<0.5%). The variation in organ donor registries worldwide necessitates public discourse and quality improvement initiatives, to identify and support leading practices in registry use.
| S-EPMC3440579 | biostudies-literature
Project description:Background: An emerging strategy to increase deceased organ donation is to use dedicated donation physicians to champion organ donation. We sought to conduct a systematic review of the effectiveness of donation physicians in improving organ donation outcomes. Objective: A systematic review was conducted following Cochrane principles. MEDLINE, Embase, and CINHAL databases were searched from inception to March 26, 2020. Methods: Quantitative studies examining the effects of donation physicians on all deceased organ donation outcomes were considered for inclusion. Review articles, editorials and opinion articles, and case studies were excluded. Study selection was completed independently by 2 team members; all discrepancies were resolved by consensus. Two team members independently extracted data from studies. Results: A total of 1017 studies were screened, and 12 met inclusion criteria. Included studies were published between 1994 and 2019. Half used an interrupted time series design (n = 6; 50%), 3 (25%) were cohort studies, and 3 (25%) used a before-and-after study design. Outcomes (reported in greater than 50% of included articles) included consent/refusal rate (n = 8; 67%), number of potential donors (n = 7; 58%), and number of actual donors (n = 7; 58%). Across studies and design types, there was an increase in potential organ donors ranging from 8% to 143% (Mdn = 33%), an increase in actual organ donors from 15% to 113% (Mdn = 27%), an increase in donor consent rate from −3% to 258% (Mdn = 12%), and an increase in deceased donor transplants from 13% to 24% (Mdn = 19%) following the introduction of donation physicians. Conclusions: Donation physicians have the potential to significantly improve deceased organ donation. Further implementation and evaluation of donation physician programs is warranted. However, implementation should be undertaken with a clear plan for a methodologically rigorous evaluation of outcomes.
| S-EPMC9218440 | biostudies-literature
Project description:Importance:Presumed consent, or an opt-out organ transplant policy, has been adopted by many countries worldwide to increase organ donation. The implication of such a policy for transplants in the United States is uncertain, however. Objective:To simulate the potential implications of a presumed consent policy in the United States. Design, Setting, and Participants:In a decision analytical model, a simulation model was developed using cohort data from January 1, 2004, to December 31, 2014, in the Organ Procurement and Transplantation Network Standard Transplant Analysis and Research files. All US patients (n = 524 359) who were on the waiting list for at least 1 solid organ and all deceased organ donors during the study period were included in the analyses. All data and statistical analyses were performed from January 30, 2019, to July 31, 2019. Main Outcomes and Measures:Increase in the organs available for donation and life-years gained associated with a 5%, 15%, or 25% increase in deceased donors, based on the published changes from a presumed consent policy. Results:This study considered 524 359 unique candidates (aged ≥18 years; 320 908 [61.2%] male) for a solid organ transplant from January 1, 2004, to December 31, 2014. With a base case scenario of a 5% presumed consent-associated increase in donors, the removals (owing to death or illness) from the waiting list for all organs would have an associated 3.2% to 10.4% mean reduction, depending on the random or ideal allocation of new organs to patients on the waiting list. Sensitivity analyses showed that waiting list removals could be decreased up to 52%; however, this reduction was not enough to completely eliminate waiting list removals during the study period. The biggest estimated increases in annual life-years gained associated with a presumed consent policy were in kidney transplant candidates (95% CIs by deceased donor increase: 5% increase, 3440-3466 years; 15% increase, 10 321-10 399 years; 25% increase, 17 201-17 332 years) and liver transplant candidates (95% CIs by deceased donor increase: 5% increase, 898-905 years; 15% increase, 2693-2714 years; 25% increase, 4448-4523 years). Adoption of a presumed consent policy could result in a 4295-year (95% CI, 4277-4313 years) to 11 387-year (95% CI, 11 339-11 435 years) increase in life-years, accounting for the survival advantages associated with a transplant. Conclusions and Relevance:In this study, presumed consent was estimated to be associated with modest but important improvement in the number of organ transplants and increases in life-years gained for patients awaiting an organ transplant. Further consideration and even debate about the ethical and public policy implications of a presumed consent policy are warranted.
| S-EPMC6777259 | biostudies-literature
Project description:BackgroundRequirements for organ donation after cardiac or imminent death have been introduced to address the transplantable organs shortage in the United States. Organ procurement organizations (OPOs) increasingly use the Internet for organ donation consent.MethodsAn analysis of OPO Web sites available to the public for enrollment and consent for organ donation. The Web sites and consent forms were examined for the minimal information recommended by the United States Department of Health and Human Services for informed consent. Content scores were calculated as percentages of data elements in four information categories: donor knowledge, donor consent reinforcement, donation promotion, and informed consent.ResultsThere were 60 Web sites for organ donation enrollment serving the 52 states. The median percent (10 percentile-90 percentile) content scores of the Web sites for donor knowledge, donor consent reinforcement, and donation promotion were 33% (20-47), 79% (57-86), and 75% (50-100), respectively. The informed consent score was 0% (0-33). The content scores for donor knowledge and informed consent were significantly lower than donor consent reinforcement and donation promotion for all Web sites (P < .05). The content scores for the four categories were similar among the 11 regions of the United Network for Organ Sharing.ConclusionThe Web sites and consent forms for public enrollment in organ donation do not fulfill the necessary requirements for informed consent. The Web sites predominantly provide positive reinforcement and promotional information rather than the transparent disclosure of organ donation process. Independent regulatory oversight is essential to ensure that Internet enrollment for organ donation complies with legal and ethical standards for informed consent.
| S-EPMC1764895 | biostudies-literature
Project description:Previous research shows that countries with opt-out consent systems for organ donation conduct significantly more deceased-donor organ transplantations than those with opt-in systems. This paper investigates whether the higher transplantation rates in opt-out systems translate into equally lower death rates among organ patients registered on a waiting list (i.e., organ-patient mortality rates). We show that the difference between consent systems regarding kidney- and liver-patient mortality rates is significantly smaller than the difference in deceased-donor transplantation rates. This is likely due to different incentives between the consent systems. We find empirical evidence that opt-out systems reduce incentives for living donations, which explains our findings for kidneys. The results imply that focusing on deceased-donor transplantation rates alone paints an incomplete picture of opt-out systems' benefits, and that there are important differences between organs in this respect.
| S-EPMC7968695 | biostudies-literature