Families are often asked for their consent to donation of their deceased relative’s organs or tissues. This request is made at a time of loss and trauma for the family. It is important both for the well-being of the family as well as for benefit to potential transplant recipients that the request for family consent be conducted well. This scoping review of the literature was conducted to support the work of a Canadian expert group sponsored by Canadian Blood Services to develop consensus on leading practices for end-of-life conversations with families of potential donors. One of the purposes of a scoping review, and the one we pursue here, is to examine the extent, range, and nature of research activity in a particular field to provide a map that aids in visualizing the issues, arguments, and evidence available in the field.1
This scoping review addresses the following question: What are the main themes and conclusions in the recent literature on asking families to consent to organ or tissue donation by a deceased family member. Our objective is to offer an organized and comprehensive overview of the diverse literature on this topic, which includes ethical commentary, qualitative and quantitative empirical research, and a small number of systematic reviews on specific questions.
MATERIALS AND METHODS
Our scoping review followed 5 main steps: (1) identify the research question, (2) identify relevant studies, (3) select studies for inclusion, (4) extract the data, and (5) summarize and present the results.1
Research Question Identification
Our objective is to provide a comprehensive map of the research activity surrounding the topic of making an “effective” request for family consent to deceased organ and tissue donation. We take this to include discussion of the meaning of “effective” in this context, as well as all consideration of factors that make requests effective or ineffective.
Identifying Relevant Studies
We conducted a search of the research databases MEDLINE, Embase, PsycINFO, Web of Science, and CINAHL between January 1, 2000, and February 20, 2015, restricting the search to peer-reviewed journal articles in English. We searched for articles that satisfied the following search criteria in any field:
(“organ don*” OR “tissue don*”) AND (family OR families OR familial OR relative OR relatives) AND (consent)
After the automatic removal of duplicate results using Endnote reference manager software and manual removal of a few remaining duplicate results, the search of these 5 databases generated a set of 957 citations.
Selecting Studies for Inclusion
Two authors screened the starting set of 957 citations on the basis of title and abstract according to the inclusion and exclusion criteria set out in Table 1. Where only a title was available, we screened on the basis of the title alone if it was sufficient for us confidently to apply the inclusion and exclusion criteria. Otherwise, we reviewed the full text of the article to screen the citation. This screening process generated a final set of 168 articles, which were retained for this review.
Data Extraction and Analysis
Two authors reviewed the 168 articles retained after screening to identify the points raised in each article that were relevant to “effective requesting.” For example, the impact on consent rates of “decoupling” (or separating the declaration of brain death from the discussion of donation) was identified as a relevant point in several articles. Another example, addressed mainly in the commentary articles rather than empirical studies, is whether the primary objective of the request to the family is to secure consent and/or to promote family well-being. We viewed this as relevant given that an “effective” request is one that achieves its objectives. Once the points raised by all the included articles were identified, we worked to create a useful conceptual map that grouped related points together. We refer to these 2 levels of organization as subtopics and topics. In a second phase, we grouped the resulting topics into 6 overarching themes (described later in the results) to make the presentation of the detailed information more useful and comprehensible. Finally, we reread all of the articles addressing a given subtopic to produce a narrative description of each subtopic.
Our sample consisted of 168 articles that contained a substantial discussion of (a) whether, when and how to ask families to consent to organ or tissue donation, or (b) the characteristics of families or decedents that affect families’ decisions or family satisfaction with their decisions. We have divided the topics, issues, and evidence contained in these articles into 6 main themes:
- The objectives of requesting and encouraging family consent to donation (Table 2).
- The effect of the donation decision on family well-being (Table 3).
- The process of requesting family consent (Table 4).
- The impact of the quality of the care for the deceased and for the family (Table 5).
- The content and manner of the request for family consent (Table 6).
- Characteristics of the family and deceased that affect the request for family consent (Table 7).
The results are organized by theme in tables below, indicating major topics and subtopics relevant to the theme that are addressed in the literature. We include an introduction to each table indicating how the theme is related to the topic of “effective requesting” from the authors' perspectives. The tables integrate information from a heterogeneous set of articles (including both ethical commentary and professional opinion as well as data-supported studies). Basic information about the type of article referenced below (commentary or empirical study), study date and country are included in a supplementary table, SDC, http://links.lww.com/TP/B410 to this article.
The Objectives of Requesting and Encouraging Family Consent to Donation
One fundamental question has to do with the primary objective of requesting family consent to donation. This could be to secure consent and to maximize donation. Instead, it could be to assist the family to make the decision that is most conducive to their longer-term well-being or reflects the decision they would have made under less stressful conditions. The position taken on this question may lead to differences of opinion on the permissibility of persuasive communication techniques.
The Effect of the Donation Decision on Family Well-Being
The psychological impact of the donation decision on families in the short term and long term is relevant to the topic of how to request family consent to donation. Obligations to protect the family could limit requestors’ efforts to overcome family reluctance if it were known that this could inflict psychological harm. Conversely, if the evidence showed that donation tended to comfort grieving families and that refusing families had a greater tendency to regret their decisions, efforts to encourage family consent would be consistent with care for the family’s well-being. However, in addition to analysis based on the ethical principle of beneficence (promotion of the family’s well-being), manipulative communication techniques might cause an independent ethical harm to family autonomy.
The Impact of the Process of Requesting Family Consent
Various aspects of the process of the request have been explored for their effects on consent rates and family satisfaction. Not surprisingly, careful planning, an unhurried approach, a comfortable and private location, and experienced requestors are all beneficial. Divergences in opinion do appear, however, on whether decoupling of the notification of death and the discussion of organ donation are necessary, as well as on whether it is better for the request to be made by a member of the health care team or professional organ donation personnel.
The Impact of the Quality of the Care for the Deceased and for the Family
The family's perceptions of the quality of care, compassion, and respect shown for the deceased, as well as the empathy and care shown toward the family affect not just the likelihood of family consent, but also family satisfaction with the process.
The Content and Manner of the Request for Family Consent
The content of the discussion with families also influences consent rates and family satisfaction. Particular points are known to impede consent or to increase the psychological harm to the family and should be addressed. In addition, the manner of the requestor influences consent rates and family satisfaction. Although confident, prodonation attitudes are preferable to apologetic or hesitant ones, requestor behavior that is perceived as focused primarily on organ procurement may offend and distress families.
Characteristics of the Family and Deceased That Affect the Request for Family Consent
A broad range of demographic and other characteristics of both family decision makers (the literature reviewed raises the following characteristics of families as associated with consent or refusal to donate: ethnicity, culture, religion, values and beliefs, psychological factors, gender, age, education, socioeconomic status, marital status, relationship to the deceased, residential location family structure and dynamics, and the number of family members present at the request) and the deceased (the characteristics of the deceased patient that have been examined for possible associations with family willingness to consent are: age, sex, religion, medical insurance status, nature of the death (trauma, illness), donation protocol, marital status, residential location, education, and existence of prior expressed wish to donate) are addressed in the literature on family consent rates. In Table 6, we summarize the discussion of selected characteristics that are most relevant to the question of how best to request family consent. In particular, certain reasons for family reluctance have to do with social, cultural, or psychological factors that are not easily amenable to change, raising the question of the appropriateness of aggressive attempts to overcome that reluctance. On the other hand, reluctance may flow from erroneous factual beliefs that can and should be corrected to allow families to make an informed decision.
This scoping review reveals that there is a large body of peer-reviewed journal literature addressing the question of how to modify the process and manner of the request to increase rates of family consent to maximize donation. Another important line of inquiry has been the impact on family well-being of the decision to donate, the prevalence of decision regret, and features of the donation experience that enhance or undermine family well-being. The literature is heterogeneous, encompassing ethical commentary and professional opinion as well as empirical studies of a wide range of qualitative and quantitative designs from a range of countries (see Table S1, SDC, http://links.lww.com/TP/B410 for basic details). A scoping review does not attempt to synthesize or assess the quality of evidence, but instead to map the nature of research activity on a question or topic that may otherwise be difficult to visualize. Taking into account these limitations, the authors' impression is that the literature generally supports the intuitive expectations that compassionate and respectful care for the deceased and family, listening for and addressing family concerns, and an attitude to donation that is positive (but not solely procurement-focused) is best for both consent rates and family well-being.
In the articles reviewed, the objective of requesting family consent is usually presumed to be to secure consent and maximize donation. However, there is also widespread acceptance in this literature of a parallel obligation to protect family well-being. In our view, these 2 objectives are not necessarily in conflict, such as where a family that is initially reluctant to donate due to the stress of the moment is supported to reach a decision to donate that later provides solace. However, persuasion that overrides family misgivings may produce longer-term suffering, such as where the family worries about “giving up too soon,” or where the family faces internal dissension or disapproval from a cultural community. Attention to the types of risk factors associated with this type of longer-term harm is important to avoid this risk to families.
Another theme relates to persuasive communication strategies in requesting family consent to donation. Although some efforts to persuade appear to us to be justifiable and beneficial—such as correcting erroneous beliefs about donation—the appropriateness of others has been questioned (eg, by Truog7) particularly if they are manipulative or aggressive in ways that pose risk to family well-being, undermine family autonomy, or offend the public's sense of due care for the grieving family.
An important dimension for many Western countries is to respond appropriately to ethnic, cultural and religious diversity that may affect family willingness to donate. Further jurisdiction- and population-specific research should explore the ways in which approaches may be tailored to take into account these different attitudes given that they affect the balance of benefits and harms that a family may feel as a result of their donation decision.
Although we have aimed to be as comprehensive as possible, we had to draw lines that excluded some topics that we felt were not sufficiently central to our topic. These topics are indicated within the exclusion criteria (Table 1).
Scoping reviews do not typically include a data evaluation (or quality assessment) step, as the objective is to offer a comprehensive map of multidisciplinary research in a field rather than to offer evidence-based conclusions on narrower research questions.1 Quality assessment is made more challenging by the heterogeneity of the field—in terms of questions, methods, and populations studied. We included only peer-reviewed journal articles, excluding a range of informal publications, conference abstracts, case law and legislation, and editorials.
Another limitation is that cultural changes or changes in policy and practice over the period of the scoping review, such as an increase in donor registration in some jurisdictions, may have altered family perceptions and expectations in a way that affects the continuing relevance of earlier observations and recommendations about how to ask families to consent.
As indicated in Table S1, SDC, http://links.lww.com/TP/B410 many of the empirical studies reviewed here are qualitative interview-based studies involving fairly small numbers of participants. Although this kind of study allows for rich and in-depth exploration of participant experience, it limits the generalizability of the results.
The term “authorization” rather than “consent” in relation to family decision making is favored in some jurisdictions, and it is possible that articles using only the term “authorization” may have been missed by our search strategy.
J.C. acknowledges the support of the Bertram Loeb Organ and Tissue Donation Institute, the Canadian Institutes for Health Research and the Canadian National Transplant Research Program, and Canadian Blood Services.
Cover image copyright © Shutterstock.com.
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