'Relative Consent' or 'Presumed Consent'? Organ donation attitudes and behaviour.
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ABSTRACT:
SUBMITTER: Costa-Font J
PROVIDER: S-EPMC7822792 | biostudies-literature | 2021 Feb
REPOSITORIES: biostudies-literature
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'Relative Consent' or 'Presumed Consent'? Organ donation attitudes and behaviour.
Costa-Font Joan J Rudisill Caroline C Salcher-Konrad Maximilian M
The European journal of health economics : HEPAC : health economics in prevention and care 20200710 1
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 count ...[more]
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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: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:BackgroundThe 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.MethodsWe 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.ResultsThe 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.ConclusionsThe next-of-kin have a considerable influence on the organ procurement process in both presumed and explicit consent nations.
| S-EPMC3363979 | biostudies-literature
Project description:ObjectiveThe emergence of evidence suggests that student nurses commonly exhibit concerns about their lack of knowledge of organ donation and transplantation. Formal training about organ donation has been shown to positively influence attitude, encourage communication and registration behaviours and improve knowledge about donor eligibility and brain death. The focus of this study was to determine the attitude and behaviour of student nurses and to assess their level of knowledge about organ donation after a programme of study.DesignA quantitative questionnaire was completed before and after participation in a programme of study using a pretest-post-test design.SettingParticipants were recruited from a University based in Northern Ireland during the period from February to April 2011.Participants100 preregistration nurses (female?:?male=96?:?4) aged 18-50 years (mean (SD) 24.3 (6.0) years) were recruited.ResultsParticipants' knowledge improved over the programme of study with regard to the suitability of organs that can be donated after death, methods available to register organ donation intentions, organ donation laws, concept of brain death and the likelihood of recovery after brain death. Changes in attitude postintervention were also observed in relation to participants' willingness to accept an informed system of consent and with regard to participants' actual discussion behaviour.ConclusionsThe results provide support for the introduction of a programme that helps inform student nurses about important aspects of organ donation.
| S-EPMC3884632 | biostudies-literature
Project description:Background: Increases in opioid-related overdose and death have led to increases in the number of organs available for donation and transplant, however persons who have a substance use disorder (SUD) may be disadvantaged relative to other health conditions with regard to receiving an organ for transplant. Objective: This study aimed to evaluate perceptions regarding acceptability and priority for organ donation vs. a control condition (resuscitation) for hypothetical persons with nine target health conditions including a substance use disorder, among persons recruited as part of an online survey. Methods: Respondents (N = 285; male = 172, female = 113) recruited from Amazon Mechanical Turk rated acceptability and priority that hypothetical persons representing nine target health conditions expected to influence transplant success (including a SUD) receive an organ transplant and resuscitation via a survey hosted by Qualtrics. Primary outcomes of stigma ratings and priority ranking of persons as a function of the hypothetical target health condition were analyzed using Repeated Measures Analyses of Variance and Bonferroni-corrected t-tests. Demographic information was presented descriptively for all respondents. Results: Ratings for acceptability and priority for persons who had a SUD were generally lower than ratings for other conditions for both organ for transplant and resuscitation, though respondents reported less stigma toward resuscitation, F (8) = 22.35, p <0.001 overall. Respondents were least supportive of persons who smoked cigarettes receiving an organ, p's < 0.001. Priority rankings favored persons who were young or had a history of heart disease. Multivariable models determined that target health condition, F (8) = 33.64, p < 0.001, was a better and more consistent predictor of response than demographic variables that were examined. Conclusions: Data suggest that general perception of acceptability and priority ranking for receipt of life-saving interventions was lower for persons who have a SUD relative to other clinically-relevant health conditions. Research to examine this effect among persons working in the donation system are warranted and efforts to reduce stigma toward persons who have a SUD should be continued.
| S-EPMC8633394 | biostudies-literature
Project description:This study investigated the critical care staff's attitude, knowledge and involvement with donation, skills and confidence with donation-related tasks and their association with consent rates at the hospital level. In 2015, we conducted a cross-sectional survey among critical care staff of hospitals involved in organ donation using an anonymous online questionnaire with a response rate of 56.4% (n = 2799). The hospital level consent rate was obtained from the Swiss Monitoring of Potential Donors database (2013-2015). For each hospital, we calculated a mean score for each predictor of interest of the Hospital Attitude Survey and investigated the association with hospital consent rates with generalized linear mixed-effect models. In univariable analysis, one score point increase in doctors' confidence resulted in a 66% (95% CI: 45%-80%) reduction in the odds to consent, and one score point increase in nurses' attitudes resulted in a 223% (95% CI: 84%-472%) increase in the odds to consent. After simultaneously adjusting for all major predictors found in the crude models, only levels of education of medical and nursing staff remained as significant predictors for hospital consent rates. In Switzerland, efforts are needed to increase consent rates for organ donation and should concentrate on continuous support as well as specific training of the hospital staff involved in the donation process.
| S-EPMC6368376 | biostudies-literature
Project description:Background and aimSwitzerland has a low post mortem organ donation rate. Here we examine variables that are associated with the consent of the deceased's next of kin (NOK) for organ donation, which is a prerequisite for donation in Switzerland.Methods and analysisDuring one year, we registered information from NOK of all deceased patients in Swiss intensive care units, who were approached for consent to organ donation. We collected data on patient demographics, characteristics of NOK, factors related to the request process and to the clinical setting. We analyzed the association of collected predictors with consent rate using univariable logistic regression models; predictors with p-values <0.2 were selected for a multivariable logistic regression.ResultsOf 266 NOK approached for consent, consent was given in 137 (51.5%) cases. In multivariable analysis, we found associations of consent rates with Swiss nationality (OR 3.09, 95% CI: 1.46-6.54) and German language area (OR 0.31, 95% CI: 0.14-0.73). Consent rates tended to be higher if a parent was present during the request (OR 1.76, 95% CI: 0.93-3.33) and if the request was done before brain death was formally declared (OR 1.87, 95% CI: 0.90-3.87).ConclusionEstablishing an atmosphere of trust between the medical staff putting forward a request and the NOK, allowing sufficient time for the NOK to consider donation, and respecting personal values and cultural differences, could be of importance for increasing donation rates. Additional measures are needed to address the pronounced differences in consent rates between language regions.
| S-EPMC4160222 | biostudies-literature
Project description:Background: The perception of organ donation and brain death among Syrian population has not been previously explored. The goal of this study is to evaluate the attitude and knowledge of organ donation among Syrians and the willingness of this population to donate their organs.Methods: We conducted a survey-based cross-sectional study in four hospitals in Aleppo, Syria in November 2019. Patient demographic, awareness of brain death; and attitude toward organ donation were collected and analyzed.Results: A total of 350 individuals were invited to participate in the survey among whom 303 (197 females, 106 males) agreed to participate in the study (87% response rate). The majority of our participants (n?=?249, 82%) heard about organ donation with television (n?=?166, 55%), social media (n?=?77, 25%), and the internet (n?=?77, 25%) being the most common sources of information. When assessing knowledge about brain death, only 40% (n?=?116) answered 3 or more questions (out of 5) correctly. Fifty-eight percent (n?=?176) of respondents agreed with the idea of organ donation and 183 (62%) would like to donate their organs one day. The leading motivation to organ donation was the desire to help (n?=?234, 77%), while the most common reason to refuse donation was the refusal to disfigure a dead body by removing an organ (n?=?125, 41%). Religious reasons were cited as motivation for organ donation by 43% of participants (n?=?130), and a reason for refusing to donate organs by 24% (n?=?71). Most respondents (n?=?261, 88%) were unaware of the laws and legislations related to organ donation in Syria. When asked if religion and law were encouraging organ donation, 76% of respondents (n?=?226) would donate their organs. Although more positive attitude was found in those with better brain death knowledge (score???3), this did not translate into more willingness to donate organs in this group of participants.Conclusions: The promotion of organ donations from deceased donors is a necessity given the rising shortage of organs. The information provided by this study could help policy makers build future strategies to promote deceased organ donation programs and overcome current obstacles preventing such initiatives from achieving their goals.
| S-EPMC7727146 | biostudies-literature
Project description:Asian Americans have substantial transplantation needs but have the lowest rates of organ donation in the USA. As the shortage of transplantable organs persists, the rate of deceased donation by Asian Americans has not kept pace with that of the general population. This report is a qualitative study of organ donation-related attitudes and beliefs of three Asian ethnic groups located in the greater Philadelphia metropolitan area: Chinese, Filipino, and Vietnamese Americans. Guided by a Community Advisory Board representing these groups, we conducted 9 focus groups with a total of 64 participants and subsequent thematic analyses. Six major themes emerged: (1) positive views about organ donation, (2) previous exposure to organ donation, (3) primacy of the family in decision making, (4) mistrust of the healthcare and donation systems, (5) religious and cultural beliefs concerning the body, and (6) isolation from mainstream American society. Although participants expressed commonalities and beliefs in line with other American racial and ethnic groups, we also identified unique beliefs, such as familial influence, religious and cultural concerns regarding body wholeness and the dead, and underlying reasons for medical mistrust, such as a belief in a black market. The study's findings challenge the dominant educational and awareness campaigns about organ donation decision making that focus on individual autonomy and overlook the need for incorporating the specific content and message delivery needs of Asian Americans. This study is the first to explore attitudes and knowledge about posthumous organ donation among US Asian American populations in at least a decade.
| S-EPMC6980458 | biostudies-literature