Elsevier

Journal of Critical Care

Volume 22, Issue 4, December 2007, Pages 296-304
Journal of Critical Care

Two perspectives on organ donation: experiences of potential donor families and intensive care physicians of the same event

https://doi.org/10.1016/j.jcrc.2007.03.002Get rights and content

Abstract

The aim was to explore how relatives and physicians understood cases where organ donation had been requested and what factors were salient for the decision on donation. Physicians of 25 deceased patients and 20 relatives were interviewed. The material was analyzed using qualitative methods. Eleven patients had declared their wishes on donation before death; in 14 cases the relatives had to decide. Half of these relatives accepted donation and half refused. The donation request was of secondary importance to the families; they were totally occupied by the death and initially tried to avoid the request by regarding “no” as a nonresponse. They needed support to relieve their immediate reactions of uneasiness, start rational thought processes, and reach well-grounded answers. The basis for requesting donation was good; relatives, with regard to circumstances, had been well prepared for the death by continuous information from the physicians and had confidence in staff, accepted that the question was raised, and understood the death criteria. However, about half the physicians experienced conflicts regarding prerequisites of procuring organs and dealing with relatives. Three different approaches were displayed: prodonation, neutral, and ambivalent. Only physicians with a prodonation approach received acceptance for donation.

Introduction

Organ transplantation is more successful than ever and is an option for new categories of patients. However, there is a gap between the need for organs for terminally ill patients and the supply of organs, and the ambition of transplantation clinics is that as many potential donors as possible be actual donors. In Sweden the Transplant Act of 1995 provides that the living will of the deceased concerning organ donation after death shall be followed; if the will of the deceased is unknown, consent is presumed. However, the donors' close relatives have a veto right in these instances; it is thus a form of “weak” presumed consent. Another restriction in the presumed consent is that if the deceased has no relatives or close friends and has not declared his or her wish in life, organs shall not be taken for transplantation. About 40% to 50% of relatives refuse donation.

According to Swedish legislation, registering in the national organ donation registry, signing a donor card, and informing one's close relatives are valid ways of expressing one's opinion about donation. However, only 17% have done this [1]. Thus, if a donation opportunity occurs, the relatives usually do not know whether the deceased was willing to donate. Therefore, in a situation often characterized by shock, grief, and fatigue, the close relatives have to make a decision on whether they will use their veto or not.

In all countries with a transplant program, the families of possible organ donors are consulted about donation. Because of the important roles of the families, several empirical studies have explored their experiences of organ donation requests (eg, references [2], [3], [4], [5], [6], [7]). These studies point to relationships between relatives' decisions and socioeconomic factors, understanding of brain-related death criteria, perception of hospital care, quality of donation request, contact with staff, and issues of information about transplantation. The living will of the deceased is the most important single factor for decision.1

The death of potential donors always takes place in an intensive care unit. According to the Swedish Law on Death, implemented in 1988, an individual is dead when the entire brain has totally and irreversibly ceased to function. Death shall be diagnosed by direct or indirect death criteria. Normally indirect criteria are used, that is, after the heart has irreversibly ceased to beat and after 20minutes' elapse of time, the brain is presumed to be totally infarcted and the patient dead. When organ donation comes up, direct criteria are used. The patient must meet all the direct brain-related death criteria while supported with mechanical ventilation so that blood circulation can be sustained after death. Death is diagnosed by clinical neurologic examination or by angiography. The Swedish law stresses that there is only one death, and the Board of Health and Welfare recommends that only the term death be used, not brain death, so that there will be no question about which death is “the real death.”

In Sweden it is the physicians in the intensive care unit (ICU) that treat potential donors and request organ donation. Incidence rates vary widely between small district hospitals where this happens once per 5 years and university hospitals with about 20 cases per year. This means that the individual physician may have no chance to develop a routine for these cases except at larger hospitals and after long experience of intensive care. In Sweden there is a strict division between staff responsible for potential donors and the Organ Procurement Organization, whose personnel consequently are not involved with families. In many other countries the situation is similar. However, other areas such as Spain and some states in Canada and the United States have personnel that are not associated with the ICUs and are especially educated for donation request and transplantation issues. Several studies explore the staff's attitudes toward organ donation and knowledge about transplantation issues (eg, references [8], [9], [10]). These studies show that an overwhelming majority of staff have a high appreciation of transplantation as such, but that a substantial minority have inconsistent attitudes toward organ donation and feel uncomfortable in contact with families of potential donors. Training in requesting donation is positively related to donation rate.

This study combined exploration of experiences of intensive care physicians and close relatives of potential donors. The focus was on how they understood the organ donation event and what factors were salient for the decision. Previous research on families and staff referred to above guided interviews, but we also tried to maintain an openness toward possible new and unexpected views of these key actors.

Section snippets

Participants

Participants were recruited in one health care region in Sweden. All 26 cases where questions of organ donation had been raised during a 10-month period and reported to the Organ Procurement Organization in central Sweden were examined. The participation of the physicians was approved by the head of the clinical departments. One case was dropped because neither the physician nor the relatives could be traced. The remaining 25 cases included both donors and nondonors (see Table 1 for cause of

Death and determining death

All deaths were unexpected, and preparation time for families and physicians was short. Only 2 patients were hospitalized for more than 4 days, and 14 for not more than 2days. Relatives were continuously informed by the physicians about the patients' conditions and how and when their conditions deteriorated. They were usually first told that even if the patient were to survive, the damages to his or her brain would be so extensive that he or she would never be able to live a normal life. At

Methodological issues

This study demonstrates how relatives and physicians experienced the same issues from their different perspectives. Some of these experiences occur as a function of the health care system and the regulations surrounding organ donation, which make these issues generalizable to other systems with similar frameworks and cultures. On another level there are ideas and feelings that are affected by the existential situation of the informants that therefore should be found in all constellations of

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This study was funded by the Swedish Research Council for Working Life and Social Research (Stockholm).

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