W. Smeets

Decision making by relatives about brain death organ donation: an integrative review.

Background Deciding about the organ donation of one’s brain-dead beloved often occurs in an unexpected and delicate situation. We explored the decision making of the relatives of potential brain-dead donors, its evaluation, and the factors influencing decision making. Methods We used the integrative review method. Our search included 10 databases. Inclusion criteria were presence of the donation request or the subsequent decision process. Three authors independently assessed the eligibility of identified articles. Results Content analysis of 70 included articles led to three themes: decision, evaluation, and support. We extracted results and recommendations concerning these three themes. The timing of the request and understandable information influence the decision. The relatives evaluate their decision differently: in case of refusal, approximately one third regret their decision, and in case of consent, approximately one tenth mention regret. The relatives are often ambivalent about their values (protection, altruism, and respect) and the deceased’s wishes, not wanting additional suffering either for their beloved or for themselves. Support is mainly focused on increasing consent rates and less on satisfaction with the decision. Conclusions Evaluation of decision making by the relatives of potential brain-dead donors reveals possibilities for improving the decision process. Special skills of the requester, attention to the circumstances, and unconditional support for the relatives might prevent the relatives’ regret about refusal and unnecessary loss of organs. We hypothesize that support in exploring the relatives’ values and the deceased’s wishes can lead to stable decisions. This hypothesis deserves further investigation.

Decision making on organ donation: the dilemmas of relatives of potential brain dead donors

BackgroundThis article is part of a study to gain insight into the decision-making process by looking at the views of the relatives of potential brain dead donors. Alongside a literature review, focus interviews were held with healthcare professionals about their role in the request and decision-making process when post-mortal donation is at stake. This article describes the perspectives of the relatives.MethodsA content-analysis of 22 semi-structured in-depth interviews with relatives involved in an organ donation decision.ResultsThree themes were identified: ‘conditions’, ‘ethical considerations’ and ‘look back’. Conditions were: ‘sense of urgency’, ‘incompetence to decide’ and ‘agreement between relatives’. Ethical considerations result in a dilemma for non-donor families: aiding people or protecting the deceased’s body, especially when they do not know his/her preference. Donor families respect the deceased’s last will, generally confirmed in the National Donor Register. Looking back, the majority of non-donor families resolved their dilemma by justifying their decision with external arguments (lack of time, information etc.). Some non-donor families would like to be supported during decision-making.DiscussionThe discrepancy between general willingness to donate and the actual refusal of a donation request can be explained by multiple factors, with a cumulative effect. Firstly, half of the participants (most non-donor families) stated that they felt that they were not competent to decide in such a crisis and they seem to struggle with utilitarian considerations against their wish to protect the body. Secondly, non-donor families refused telling that they did not know the deceased’s wishes or contesting posthumous autonomy of the eligible. Thirdly, the findings emphasise the importance of Donor Registration, because it seems to prevent dilemmas in decision-making, at least for donor families.ConclusionDiscrepancies between willingness to consent to donate and refusal at the bedside can be attributed to an unresolved dilemma: aiding people or protect the body of the deceased. Non-donor families felt incompetent to decide. They refused consent for donation, since their deceased had not given any directive. When ethical considerations do not lead to an unambiguous answer, situational factors were pivotal. Relatives of unregistered eligible donors are more prone to unstable decisions. To overcome ambivalence, coaching during decision-making is worth investigation.

Request for organ donation without donor registration: a qualitative study of the perspectives of bereaved relatives

BackgroundIn the Netherlands, consent from relatives is obligatory for post mortal donation. This study explored the perspectives of relatives regarding the request for consent for donation in cases without donor registration.MethodsA content analysis of narratives of 24 bereaved relatives (14 in-depth interviews and one letter) of unregistered, eligible, brain-dead donors was performed.ResultsRelatives of unregistered, brain-dead patients usually refuse consent for donation, even if they harbour pro-donation attitudes themselves, or knew that the deceased favoured organ donation. Half of those who refused consent for donation mentioned afterwards that it could have been an option. The decision not to consent to donation is attributed to contextual factors, such as feeling overwhelmed by the notification of death immediately followed by the request; not being accustomed to speaking about death; inadequate support from other relatives or healthcare professionals, and lengthy procedures.ConclusionHealthcare professionals could provide better support to relatives prior to donation requests, address their informational needs and adapt their message to individual circumstances. It is anticipated that the number of consenting families could be enlarged by examining the experience of decoupling and offering the possibility of consent for donation after circulatory death if families refuse consent for donation after brain-death.

Religious and nonreligious coping among cancer patients

A pilot study was conducted at the outpatient clinic of the department of medical oncology of Radboud University Nijmegen Medical Centre. The goal was to draw up an inventory of religious and nonreligious coping strategies of patients with a life threatening disease such as cancer. Current research focuses on various forms of coping. An often neglected coping strategy is religious coping. Research in this field so far was conducted mostly in the USA. When it comes to religion and worldview the Netherlands differs from the USA in important respects. In this article we explore religious coping in the context of the Dutch society.

Attentiveness to religious/spiritual coping and meaning questions of patients : A survey among physicians in Dutch academic hospitals

Illness is a bio-psycho-social-spiritual process. Physicians focus primarily on the physical level; but attention to the other levels — including the religious/spiritual level — is recommended. Research, predominantly conducted in the USA , indicates that the worldview of physicians determines their attentiveness to their patient’s religiosity/spirituality. This study investigates medical specialists in academic hospitals in the Netherlands. The study participants were 664 medical specialists from five Dutch academic hospitals. In the more secularised Netherlands, attention to the spiritual level also includes attention to meaningfulness, and related questions of meaning. Our research attempted to show the influence of the worldview of these specialists on their attention to the religiosity/spirituality of and questions of meaning raised by very ill patients. Religiosity/spirituality was operationalised in religious/spiritual coping activities. Meaning questions were measured by a self-constructed instrument. We found four clusters of relevant meaning questions: ‘end of life’, ‘God’, ‘attributions’ and ‘relationship with significant others’. Attentiveness to religious/spiritual coping was influenced by the salience of a worldview in the life of the medical specialists. No such influence was detected with regard to questions of meaning.