Opinions and Expectations of Muslim Donors' Relatives Deciding Organ Donation: The Sample of Istanbul.

The low rate of consent by relatives of potential donors especially in Muslim majority countries is one of the basic limiting factors of the success of organ transplantation. Therefore, this study aimed to explore opinions and expectations of relatives after donating their beloved ones' organs on a Muslim sample in Istanbul Region. Descriptive method was used. Data were collected from 82 of 95 Muslim donor relatives who agreed to participate in the study between the March and July 2014 via telephone calls. It was found that most of the relatives had donated the organs of their relatives for "keeping alive the beloved ones' organs in others' bodies instead to send them to the soil." Less of the relatives expressed regret for donating due to not introducing to the recipients. Muslim donor families also expect priority in hospitals and priority for transplantation if they have another relative waiting for organ transplantation.

Blood ties and trust: a comparative history of policy on family consent in Japan and the United States.

Informed consent honors the autonomous decisions of patients, and family consent places importance on decisions made by their families. However, there is little understanding of the relationship between these two medical decision-making approaches. Both approaches exist in Japan as part of its truth disclosure policy. What is the status of family consent in the United States, from which Japan introduced informed consent? This paper compares the situation in the United States with that in Japan, where family consent has been combined with informed consent. It then explains the history of policy development through which family consent was added to informed consent in the United States. Based on this analysis, the paper suggests that the relationship between informed consent and family consent in the United States was established on the basis of a family model that places more importance on trust-based relationships than it does on blood ties.

Intimacy and Family Consent: A Confucian Ideal.

In the West, mainstream bioethicists tend to appreciate intimate relationships as a hindrance to individual autonomy. Scholars have even argued against approaching a mother to donate a kidney to save the life of her child; the request, they claim, is too manipulative and, thereby, violates her autonomy. For Chinese bioethicists, such a moral analysis is absurd. The intimate relationship between mother and child establishes strong mutual obligations. It creates mutual moral responsibilities that often require sacrifices for each other. This paper argues that while aiding others is a moral duty, helping one's family is a much stronger duty and poses no threat to one's autonomy. For Confucianism, empathetic intimate feelings, the heart and mind of ren, rest at the root of morality. It requires that we, as moral beings, assume duties to relieve the suffering of others. The more intimate the relationship the stronger the obligation to assist. The family is a closely knitted moral community. Family members often share living resources, mutual experiences, and a sense of identity. Family members act as a social unit, and, ordinarily, mutual obligations among members have priority over duties to those outside of the family. For Confucian bioethics, family-based consent to medical treatment is regarded as natural and reasonable. Family-based decision making is a taken-for-granted norm of social life. While close family members have priority, Confucianism extends such obligations outward toward members of the extended family and the society at large. There is a general principle of gradation of love, which reflects different degrees of personal intimacy and, therefore, of moral obligation. In this fashion, Confucianism seeks to treat the whole of society as one extended family. Hence, in bioethics, mutual responsibility and family-based consent are regarded as basic principles. Through a series of case discussions, this paper illustrates that atomistic individual-based autonomy offers but a poor response to bioethical issues.

Using and respecting the dead human body: an anatomist's perspective.

In his stimulating article enquiring into what the living owe the dead, Wilkinson (2013, Clin. Anat. DOI: 10.1002/ca.22263) sought to unpack a range of ethical questions of considerable interest to anatomists. In this, he looked closely at the extent to which we are or are not to respect all the prior wishes of the deceased, and the implications of this for the role of the family in providing consent, the use of unclaimed bodies, and the public display of bodies. Some of his conclusions challenge widely encountered views by anatomists. In this response I have re-visited these topics in an attempt to ground his arguments in the experience of anatomists, by emphasizing the many intimate connections that exist between each of these areas. The following emerge as issues for further debate. I accept that the wishes of the deceased are preeminent, so that authorities should make every effort to abide by these. This reiterates the importance of body bequests over against unclaimed bodies, and provides a context for assessing the role of family consent. This has repercussions for all activities employing dead bodies, from the dissecting room to public plastination exhibitions. In determining the extent to which the wishes of the deceased are followed the input of other interested parties is a relevant consideration. An ethical assessment of the public display of bodies needs to take into account the nature of the plastination process.

Weekend effect: analysing temporal trends in solid organ donation.

BACKGROUND: Research suggests patients treated over weekends experience poorer outcomes. Only one US-based study explored this weekend effect in organ donation, specifically the kidney discard rate. In Australia potential donors are referred to a donation service, and donation proceeds if family consent is granted and the donor is deemed medically suitable to donate. Organ procurement occurs when utilization is almost certain hence discard rates are much lower than in the USA. We aimed to characterize the effect of weekend referral on organ donation in Australia. METHODS: We retrospectively reviewed all New South Wales Organ and Tissue Donation Service logs from 2010 to 2016. Our primary outcome was progression to organ procurement, and secondary outcomes were family consent and meeting medical suitability thresholds. We used logistic regression with random effects adjusting for clustering of referral hospitals. RESULTS: Of 3496 potential donors referred for consideration, 694 (20%) progressed to organ procurement. There were fewer referrals on weekends (average 415 versus 588 for weekdays). However, donation rates were no lower for weekend compared to weekday referrals (adjusted OR 1.17; 95% CI 0.95, 1.44). Family consent (adjusted OR 1.20; 95% CI 1.00, 1.44) and medical suitability (adjusted OR 1.15; 95% CI 0.96, 1.38) were not lower for weekend compared to weekday referrals. Similar results were found for all sensitivity analyses conducted. CONCLUSIONS: In Australia, the donation pathway operates consistently throughout the week, with donation no less likely to proceed on weekends and holidays. This finding contrasts with findings in the USA.

Bereaved relatives' decision about deceased organ donation: An integrated psycho-social study conducted in Spain.

RATIONALE: Family refusal to organ donation of a deceased relative represents one of the most important barriers to organ transplantation. Although a large literature about family decisions has amassed, the existing evidence needs further integration and structuring. OBJECTIVE: This study seeks to analyse relationships between bereaved relatives' decisions and a wide range of factors that converge in the family decision process, including interactions and complex relationship patterns, and taking psychosocial theoretical frameworks as reference to conceptualize empirical findings. METHOD: This observational study examined 16 Spanish hospitals during a 36-month period. Transplant coordination teams collected data of 421 cases of family decision processes about donation (338 donations/83 refusals) through a previously validated instrument. Indicators of the following factors were collected: deceased's characteristics; circumstances of death; bereaved relatives' characteristics, beliefs, and expressions; behaviour of health and coordination staff; and family's emotional responses. Three global hypotheses related to bivariate and multivariate relations of factors with family decisions and relationships/interactions among factors were tested. RESULTS: Relatives' beliefs about the deceased's wishes concerning donation are the strongest predictor of family decisions. However, family decisions are also related to the deceased's characteristics, relatives' characteristics, satisfaction with medical attention, satisfaction with personal treatment and relatives' emotional responses, and other factors. Relatives' emotional reactions are related to satisfaction with health-staff interventions and condition family decision, even if deceased's will concerning donation is known and positive. Relatives' beliefs about deceased's wishes concerning donation vary as a function of deceased's characteristics and according to relatives' characteristics. CONCLUSIONS: Understanding of family decisions underlying organ donation may greatly benefit from a more complex, integrated, and theoretically based approach. Educational efforts should stress the need to register or simply communicate own willingness to donate organs. However, an adequate training and performance of the health-staff involved in the organ donation process may generate substantive differences in consent rates.

An Integrated Psychosocial Model of Relatives' Decision About Deceased Organ Donation (IMROD): Joining Pieces of the Puzzle.

Organ transplantation remains currently limited because the demand for organs far exceeds the supply. Though organ procurement is a complex process involving social, organizational, and clinical factors, one of the most relevant limitations of organ availability is family refusal to donate organs of a deceased relative. In the past decades, a remarkable corpus of evidence about the factors conditioning relatives' consent has been generated. However, research in the field has been carried out mainly by means of merely empirical approaches, and only partial attempts have been made to integrate the existing empirical evidence within conceptual and theoretically based frameworks. Accordingly, this work articulates the proposal of an Integrated Psychosocial Model of Relatives' Organ Donation (IMROD) which offers a systematic view of the factors and psychosocial processes involved in family decision and their interrelations. Relatives' experience is conceptualized as a decision process about the possibility of vicariously performing an altruistic behavior that takes place under one of the most stressful experiences of one's lifetime and in the context of interaction with different healthcare professionals. Drawing on this, in the proposed model, the influence of the implied factors and their interrelations/interactions are structured and interpreted according to their theoretically based relation with processes like rational/heuristic decision-making, uncertainty, stress, bereavement, emotional reactions, sense of reciprocity, sense of freedom to decide, and attitudes/intentions toward one's own and the deceased's organ donation. Our model also develops a processual perspective and suggests different decisional scenarios that may be reached as a result of the combinations of the considered factors. Each of these scenarios may imply different balances between factors that enhance or hinder donation, such as different levels of uncertainty and potential decisional conflict. Throughout our work, current controversial or inconsistent results are discussed and interpreted on the basis of the relationships that are posited in the proposed model. Finally, we suggest that the structure of the relationships and interactions contained in our model can be used by future research to guide the formulation of hypotheses and the interpretation of results. In this sense, specific guidelines and research questions are also proposed.

Social and Communicative Functions of Informed Consent Forms in East Asia and Beyond.

The recent research and technology development in medical genomics has raised new issues that are profoundly different from those encountered in traditional clinical research for which informed consent was developed. Global initiatives for international collaboration and public participation in genomics research now face an increasing demand for new forms of informed consent which reflect local contexts. This article analyzes informed consent forms (ICFs) for genomic research formulated by four selected research programs and institutes in East Asia - the Medical Genome Science Program in Japan, Universiti Sains Malaysia Human Research Ethics Committee in Malaysia, and the Taiwan Biobank and the Taipei Medical University- Joint Institutional Review Board in Taiwan. The comparative text analysis highlights East Asian contexts as distinct from other regions by identifying communicative and social functions of consent forms. The communicative functions include re-contact options and offering interactive support for research participants, and setting opportunities for family or community engagement in the consent process. This implies that informed consent cannot be validated solely with the completion of a consent form at the initial stage of the research, and informed consent templates can facilitate interactions between researchers and participants through (even before and after) the research process. The social functions consist of informing participants of possible social risks that include genetic discrimination, sample and data sharing, and highlighting the role of ethics committees. Although international ethics harmonization and the subsequent coordination of consent forms may be necessary to maintain the quality and consistency of consent process for data-intensive international research, it is also worth paying more attention to the local values and different settings that exist where research participants are situated for research in medical genomics. More than simply tools to gain consent from research participants, ICFs function rather as a device of social communication between research communities and civic communities in liaison with intermediary agents like ethics committees, genetic counselors, and public biobanks and databases.

An investigation into the factors effective in the consent of families with brain-dead patients candidates for organ donation in Isfahan, Iran in 2012-13.

BACKGROUND: Studies have shown that, with regard to social, cultural, and institutional contexts, several factors affect family decision-making on organ donation. This study aimed to investigate the effective factors in organ donation by family members with brain-dead patients. MATERIALS AND METHODS: This was a descriptive-comparative study in which a researcher-made questionnaire was used to collect data. The reliability of the questionnaire was obtained as 0.81 using Cronbach's alpha. The study sample consisted of 85 members of families with brain-dead patients in Isfahan, Iran in 2012-13. The collected data were analyzed using the Statistical Package for the Social Sciences version 20.0, and the level of significance was considered as <0.05. RESULTS: The obtained results indicated that factors such as age, marital status, level of education, and cause of brain death did not have any effect on their families consent, whereas factors such as gender, duration of hospitalization, having an organ donation card, personal view of the brain-dead patient, and the number of patient's children had a significant relationship with the consent on organ donation. In addition, the care and treatment team were effective in family decisions regarding organ donation. CONCLUSIONS: In general, the necessary culture and increasing the population awareness and their knowledge can be a positive step in this regard and may bring about an easy and rapid acceptance of organ donation by the involved families.

Prior family communication and consent to organ donation: using intensive care physicians' perception to model decision processes.

ABSTRACT: Generally, the Swiss hold favourable attitudes to organ donation, but only few carry a donor card. If no card is found on a potential donor, families have to be approached about donation. The aim of this paper is to model the role that some family communication factors play in the family decision to consent or not to organ donation by a brain dead relative. Information was gathered in face-to-face interviews, using a questionnaire and recording open answers and comments. Eight heads of intensive care units (ICU) of Swiss hospitals and one representative from Swisstransplant were interviewed. Questions asked respondents to estimate the prevalence and effect of communication factors in families facing a decision to consent to donation. Answers were averaged for modelling purposes. Modelling also relies on a previous representative population survey for cross-validation. The family of the deceased person is almost always approached about donation. Physicians perceive that prior thinking and favourable predisposition to donation are correlated and that the relatives' predisposition is the most important factor for the consent to donation, up to the point that a negative predisposition may override an acknowledged wish of the deceased to donate. Donor cards may trigger family communication and ease the physicians' approach to family about donation. Campaigns should encourage donate-willing people to talk to their families about it, make people think about organ donation and try to change unfavourable predispositions. ACKNOWLEDGEMENT: the authors wish to thank the interviewees whose collaboration has provided them an overview of today's situation in Switzerland.