Siminoff LA, Gordon N, Hewlett J, Arnold RM. Factors Influencing Families' Consent for Donation of Solid Organs for Transplantation. JAMA. 2001;286(1):71-77. doi:10.1001/jama.286.1.71
Author Affiliations: Departments of Medicine (Drs Siminoff and Hewlett) and Epidemiology and Biostatistics (Dr Gordon), Case Western Reserve University School of Medicine, Cleveland, Ohio; Department of Medicine, University of Pittsburgh School of Medicine, Pittsburgh, Pa (Dr Arnold).
Context Transplantation has become the therapy of choice for patients with organ
failure. However, the low rate of consent by families of donor-eligible patients
is a major limiting factor in the success of organ transplantation.
Objective To explore factors associated with the decision to donate among families
of potential solid organ donors.
Design and Setting Data collection via chart reviews, telephone interviews with health
care practitioners (HCPs) or organ procurement organization (OPO) staff, and
face-to-face interviews with family for all donor-eligible deaths at 9 trauma
hospitals in southwestern Pennsylvania and northeastern Ohio from 1994 to
Participants Family members, HCPs, and OPO staff involved in the donation decision
for 420 donor-eligible patients.
Main Outcome Measure Factors associated with family decision to donate or not donate organs
Results A total of 238 of the 420 cases led to organ donation; 182 did not.
Univariate analysis revealed numerous factors associated with the donation
decision. Multivariable analysis of associated variables revealed that family
and patient sociodemographics (ethnicity, patient's age and cause of death)
and prior knowledge of the patients' wishes were significantly associated
with willingness to donate (adjusted odds ratio [OR], 7.68; 95% confidence
interval [CI], 6.55-9.01). Families who discussed more topics and had more
conversations about organ donation were more likely to donate (adjusted OR,
5.22; 95% CI, 4.32-6.30), as were families with more contact with OPO staff
(adjusted OR, 3.08; 95% CI, 2.63-3.60) and those who experienced an optimal
request pattern (adjusted OR, 2.96; 95% CI, 2.58-3.40). Socioemotional and
communication variables acted as intervening variables.
Conclusions Public education is needed to modify attitudes about organ donation
prior to a donation opportunity. Specific steps can be taken by HCPs and OPO
staff to maximize the opportunity to persuade families to donate their relatives'
Organ transplantation is one of medicine's success stories. Improvements
in transplant immunology and surgical techniques have transformed transplantation
from an experimental treatment to the therapy of choice for patients with
organ failure. Not surprisingly, its success has dramatically increased demand.
The number of patients waiting for solid organs has increased 70% during the
past decade.1- 3
Patients who have been declared dead using neurologic criteria (irreversible
loss of all brain function but maintained on ventilators) are the single largest
source of transplantable organs. Unfortunately, of these 12 000 to 15 000
potential donors,4 fewer than 6000 become organ
donors each year.5
The major factor limiting the number of organ donors is the low percentage
of families who consent to donation. A 1995 study of families of donor-eligible
patients found that 86.5% were asked to donate but only 47.3% gave consent.6 Other studies have confirmed these findings.7,8
Why are consent rates so low? Public opinion surveys show a great deal
of support for donation. More than 75% of respondents in a recent Gallup poll
stated they would donate their organs if asked.9
While epidemiologic data suggest that minorities, families from lower socioeconomic
strata, and individuals with less formal education are less likely to donate,
these data do not explain why these patterns exist. Results of several studies
of individuals who were asked to donate a family member's organs suggested
that the timing and privacy of the request, the involvement of an organ procurement
staff person, and improved understanding of the meaning of brain death are
key explanatory factors.10- 12
The goals of this study were to assess the determinants of families'
willingness to donate solid organs, to describe the process and content of
the conversations surrounding the donation request, and to evaluate the correlation
between these factors and the consent rate.
Nine trauma hospitals (including 2 pediatric hospitals) in southwestern
Pennsylvania and northeastern Ohio participated. Data were collected from
January 1994 through December 1999. The study was approved by the institutional
review board of each institution and informed consent was obtained from all
Medical records were reviewed and analyzed for 11 555 deceased
patients using the previously validated chart review form (CRF).6
The structure of the CRF and content of the health care practitioner (HCP)
and organ procurement organization (OPO) interviews have been described.6,13,14 The CRF, developed
in conjunction with local OPOs, determines a patient's eligibility to donate
any organ based on age, past medical history, current comorbid conditions,
and neurologic status. The HCPs who cared for donor-eligible patients were
identified from the chart. If any HCP or OPO discussed donation with the family,
that family was included in the study. All HCPs or OPOs who spoke with the
family about donation were interviewed.
The HCP and OPO interviews6,13
were designed to obtain data about the HCPs' procurement-related behavior
(eg, whether health care professionals discussed donation with the family,
and the circumstances surrounding those requests) and their attitudes and
knowledge about the donation process. Interviews were conducted no later than
4 weeks after the patient's death.
All family members and significant others who were at least 18 years
of age and were identified by an HCP or OPO staff person or the chart as being
involved in the decision about donation were invited to participate in a face-to-face
interview. Letters were sent to families 2 to 3 months after the patient's
death. The letters were followed by telephone calls from a trained research
assistant, extending an invitation to participate. Home interviews were arranged
with those who agreed.
The family interview consisted of 3 parts. The first was an open-ended
description of the events immediately surrounding and following the patient's
death. If other family members were identified as being involved in the donation
decision, they were subsequently included in the study. The second part was
a series of structured and semistructured questions about the donation request.
The third part was a series of structured questions to measure attitudes and
knowledge about organ donation. Sociodemographic information was obtained
from all participants.
The interview questions were based on past research and theoretical
Those variables that were found to be associated with the donation decision
are listed in the
Factor 1. Prerequest variablesFamily/patient sociodemographic and medical
Cause of death
Termination of life supports
Family attitudes and beliefs about organ donation
Family attitude scale Family member willing to be a donor
Religion encourages organ donation
HCP's comfort level answering family's questions about organ donation
Family's prior knowledge about patient's wishes regarding donation
Had enough information about patient's wishes
Knew patient had donor card
Thought patient wanted to donate
Explicitly discussed donation with patient
Factor 2. Family understanding of brain death and
treatmentRating of family's overall understanding of brain death
Family understanding of when moment of death occurs
Factor 3. Socioemotional and communication process
variablesFamily felt harassed or pressured to make decision
Family perceived at least 1 health care practitioner not caring or concerned
Family surprised to be asked about donation
Health care practitioners reported family's initial reaction to donation
request to be same as family's self-report (congruence)
Factor 4. Who raised issue of donation and spoke to
familyFirst health care practitioner/organ procurement organization to raise
issue is the same family identifies as most important to them in process
Family raises issue of donation themselves
Optimal request pattern
Factor 5. Organ procurement organization request-related
variablesFamily reported decision influenced by organ procurement organization
Amount of time spent with organ procurement organization
Factor 6. Topics discussed with familyHealth care practitioner told family he/she required to ask
Health care practitioner told family donation helps others
Costs of donation
Impact of donation on funeral
Different body parts could be donated and that family had a choice
Family concerns about disfigurement
Family assured donation would not cost anything
Answered family questions about donation
Total number of topics discussed with family
Number of issues of concern to family
Number of discussions about organ donation
Factor 7. Timing of donation requestOrgan donation mentioned during brain death testing
Organ donation mentioned before, after, or concurrent with declaration of death
All interviews were audiotaped and transcribed. A coding scheme was
developed based on our past work.6 Categories
of responses were derived from the data. Structured coding was used to tabulate
responses to the semistructured questions. A rulebook was developed to guide
the coders. Independent coders double coded the interviews to ensure reliability.
Interview data were entered into a FoxPro database (Version 3.0, Microsoft
Corporation, Redmond, Wash) and analyzed using univariate and multivariable
techniques (SAS Version 8.1, SAS Institute, Cary, NC).
The univariate relationship of independent variables with the family's
final decision to donate was evaluated using a 2-tailed χ2
test for variables with 3 or more categories or the Fisher exact test for
variables with 2 categories. The Wilcoxon rank sum test was used for interval
or ordinal scale variables.
To describe the relationship of the family's final decision to donate
with family and patient characteristics and request process characteristics,
independent variables were grouped
(BOX) based on preidentified conceptual
domains (eg, who raised the issue of donation). First, variables identified
as significantly associated with donation within each of the domains using
bivariate analysis techniques were retained. Second, a separate logistic regression
analysis was performed on each of these groups of variables using donation
as the outcome. This process created 6 variables representing the estimated
probability of donation for each conceptual domain. Third, using the median
probability value as a cut point, each of these variables was transformed
into a dichotomous variable. Only 6 of the 7 variables had a direct relationship
with donation. A log-linear regression using the 6 dichotomous variables and
the donation outcome variable analyzed the interrelationships between the
6 categories of variables and donation.
Of the 11 555 records reviewed, 741 (6.4%) of the cases were potential
solid organ donors. Requests for donation were made by either an HCP or the
OPO for 596 (80.4%) donor-eligible families with a resultant 47.5% consent
rate. Analyses reported here are based on a final sample of 420 cases (238
donors and 182 nondonors) for which we have complete HCP, OPO, and family
interview data. We were able to obtain participation from 92.5% of patients'
HCPs and OPOs. Seventy-four percent of family decisionmakers—84.7% of
donor families and 63.6% of nondonor families—consented to be interviewed.
There were no differences between participants and nonparticipants by age,
sex, or ethnicity. Approximately 2 HCP/OPO interviews and 1.25 family interviews
were obtained for each patient. Patients were predominantly male (60.1%) and
white (85.6%); their mean age was 40.5 years (range, newborn to 83.9 years).
Family decision makers (n = 481) were predominantly female (66.4%), white
(84.6%), married (66.4%), and averaged 44.7 years of age (range, 18-86 years).
Decisions regarding donation were made quickly, with 55% of families
stating they made their decision during the initial request. At initial request,
57.6% of families were favorable toward donation, 25.5% were unfavorable,
and 16.9% were undecided. This initial response predicted the final donation
decisions of 69.5% of families. Of those initially favorable, 80.6% eventually
consented to donation compared with only 9.4% of families initially unfavorable
toward donation and 46.5% of those initially undecided (Table 1).
Family and patient characteristics and their attitudes and beliefs about
organ donation were significantly associated with the decision to donate organs.
Families of white patients (61.4% vs 38.6%, P<.001),
younger patients (P = .001), and male patients (62.2%
vs 37.8%, P = .007) were more likely to consent to
organ donation. However, consent was also associated with deaths due to trauma
compared with nontrauma-related deaths (65.1% vs 34.9%, P = .002). No associations were found between consent rates and families'
educational attainment or income.
Families who reported positive beliefs about organ donation were significantly
more likely to donate, as were families who had prior knowledge of the patients'
wishes regarding donation. Knowing the patient had a donor card (89.3% knew
patient had a card vs 44.4% knew patient did not have card, P<.001), having had an explicit discussion about donation with the
patient (65.9% vs 34.1%, P = .002), and a belief
the patient would have wanted to donate, even exclusive of an explicit discussion
(86.4% vs 13.6%, P<.001), were strongly associated
with consent to organ donation.
Finally, no association was found between the decision to donate and
the hospital environmental variables or HCPs' sociodemographic characteristics
(including age, sex, ethnicity, religious affiliation, and professional role).
While HCPs' attitudes toward organ donation did not correlate with consent
rates, their comfort with answering families' questions about donation was
significantly associated with organ donation (P<.001)
Although overall satisfaction with hospital care was not correlated
with the donation decision, socioemotional and communication issues were important.
Families who believed that 1 or more HCPs involved in their relatives' care
were not caring or concerned were somewhat less likely to donate (56.6% vs
43.4%, P = .04). Factors directly associated with
the donation request were important. For example, families who were surprised
to be asked about organ donation were less likely to donate than families
who were not (66.0% vs 34.0%, P<.001). Families
who felt harassed or pressured to make a decision were also less likely to
donate (65.9% vs 34.1%, P = .002). Health care practitioners'
correct assessment of a family's initial reaction to the issue of donation
was strongly associated with the donation decision. Less than half the HCPs
(46.9%) correctly ascertained families' initial response to the request to
donate organs. Families who were congruent with HCPs concerning the initial
reaction to the donation request were more likely to consent to donate (71.6%
vs 28.4%, P<.001) (Table 2). When we controlled for initial reaction to the donation
request, these findings remained for families who stated they were initially
prodonation (P<.001) or undecided (P<.001).
The best time and person to approach families about donation has not
been clear.7,20 In our study,
families who raised the issue themselves were more likely to donate (85.7%
vs 14.3%, P<.001). Rates of consent were not different
when a physician (53.6%), nurse (56.3%), social worker (66.7%), or OPO staff
member (64.1%) made the initial request (P = .30).
However, when a hospital-based HCP (but not a physician) broached the possibility
of organ donation, followed by a meeting with an OPO staff person, the donation
rate exceeded that of any other discussion pattern (P<.001).
Families reported that conversations with OPO staff were crucial to the donation
decision. Talking to an OPO staff person before being asked to make a donation
decision (P<.001), and spending more time with
an OPO staff person (P<.001) were both factors
strongly associated with donation (Table
2). This was true even after controlling for families' initial reactions
Unlike other retrospective studies that relied on chart review or that
had few nondonor respondents in their samples,20- 22
we found no association between when the donation request was first made and
consent rates. This included the timing of the request in relation to testing
for brain death or the pronouncement of death (Table 2).
We hypothesized that a salient feature of consent would be a family's
understanding that the patient was indeed dead. For example, 18.1% of families
reported confusion as to when the moment of death occurred; 20.9% believed
that the patient was dead only when the heart ceased to beat. Despite this
confusion, 56.6% of family respondents who stated they were unsure as to when
the moment of death occurred consented to donate organs, as did 39.8% of families
who thought the patient was dead only when the heart stopped. No differences
were found between family consent rates and the belief the patient was still
alive after the declaration of brain death (P = .20).
Certain topics discussed with families, and the number of discussions,
were associated with organ donation decisions. Topics correlated with consent
to organ donation were the costs of donation, the impact of donation on funeral
arrangements, disfigurement of the body, and assurances that the family had
a choice about which organs to donate (P<.001).
When HCPs told families they were required to ask about donation, families
were less likely to donate (56.0% vs 44.0%, P = .002).
However, when HCPs mentioned that donation had the potential to help others,
families were more likely to donate (72.3% vs 27.7%, P
= .001). Having more discussions about donation itself, discussing more topics
of concern to the families, and having more questions answered were all associated
with consent to donate (P<.001) (Table 2).
Asking for organ donation is a complex task entailing a number of factors
that may or may not be relevant for every situation. To better understand
the independent effects of these factors on the eventual donation decision,
individual variables were aggregated into 7 categories (factors) representing
different aspects of the donation process
(BOX). The effects of the individual
components comprising each factor were discussed above. Six of the 7 factors,
along with the donation decision, form the basis of the log-linear regression
analysis. The resulting model uses a hierarchical technique such that all
single factors occurring in statistically significant interaction terms are
kept in the model. Table 3 exhibits
the interrelationships between the 6 major factors and the outcome variable
of donation. The model indicates that there were also significant relationships
between the 6 factors themselves.
Results of the multivariable analysis reveal that 4 factors were directly
related to the donation decision: (1) prerequest characteristics, (2) who
raised issue of donation and spoke to family, (3) OPO request-related variables,
and (4) topics discussed with the family. Prerequest variables were strongly
associated with the decision to donate. Families' sociodemographics, attitudinal
characteristics, and prior knowledge of the patients' wishes were included
in this cluster. Families who fit the profile of being more positive about
donation were over 7 times more likely to donate (adjusted odds ratio [AOR],
7.68; 95% confidence interval [CI], 6.55-9.01). After controlling for other
variables, an optimal request pattern (a health care provider other than a
physician making the initial request followed by discussion with an OPO coordinator)
ensured that the family was almost 3 times as likely to give consent compared
with other patterns (AOR, 2.96; 95% CI, 2.58-3.40). Organ procurement organization
request-related factors also were associated with a 3-fold likelihood of donating.
Families who had two-thirds more contact with OPO staff were 3 times as likely
to donate irrespective of other factors (AOR, 3.08; 95% CI, 2.63-3.60). Finally,
the number of topics and the kind of topics discussed were also strongly associated
with the donation decision. Families who had more topics of interest discussed
with them and who had more conversations about organ donation were over 5
times more likely to donate even when controlling for other factors such as
initial response to the donation request (AOR, 5.22; 95% CI, 4.32-6.30) (Table 3).
There is no "magic bullet" that will improve organ donation rates. This
study identified a number of factors that influence family consent to organ
donation. First, we must acknowledge that most families have some knowledge
of organ donation and most have some preconceived attitudes about it. Thus,
what we have termed prerequest variables—characteristics
that individuals bring with them to the decision process—play a significant
role in how the request is received and processed by family members making
these decisions. Of note, families of patients who were younger, male, and
who died from trauma were more likely to donate as were families who were
white, were more positive about organ donation, and who believed the patient
would have wanted to donate. Families who met with HCPs who rated themselves
as generally more comfortable answering families' questions about donation
were also more likely to donate. These variables were the strongest influences
on the consent to donate.
These prerequest variables are significant determinants of donation,
suggesting the need for increased educational efforts to help inform the public
about organ donation. Current emphasis has been on the benefits of transplantation,
which is the proximal outcome of donation. However, little public education
has centered on the donation process itself, which could prepare individuals
for this potential life event. Since it is not reasonable to expect that family
decision makers can or even should relinquish strongly held beliefs about
organ donation when experiencing the severe stress of a loved one's death,
prior education is the best mechanism we may have to inform the public and
prepare families for an organ donation request. Further research might focus
on how best to convey the important information and increase the effectiveness
of public education campaigns.
There remains significant room for improvement in the request process.
First, a good relationship between families and the HCPs caring for the patient
can smooth the way for a donation request. Second, our results suggest that
families are more likely to donate if they are prepared that a request will
be made; conversely, families who reported greater surprise were less likely
to donate. One better approach may be to regularly assess the family's beliefs
regarding their loved one's likelihood of survival and not bring up organ
donation until the family members acknowledge their loved one's terminal status.
Health care practitioners making donation requests must learn how to
ask appropriately. Our results suggest that asking apologetically or mentioning
that one is legally required to ask is likely to result in a refusal. In addition,
we found that the more time spent discussing the issue and the more information
discussed, the more likely the family was to donate, even when controlling
for variables such as the family's initial reaction to the request.
Our data suggest that most HCPs are poor judges of who wants to donate.
Health care practitioners were correct in their assessments in less than half
the cases. When HCPs believed the family was negatively disposed toward donation,
they spent less time discussing donation. Moreover, families whom the HCP
thought were unfavorably disposed regarding donation were less likely to talk
to the OPO staff. An excellent way to avoid this pitfall is to establish a
standard practice of always calling the OPO to meet with the families of potential
Our data strongly indicate that involvement of the family with a professional
from the OPO is critical. The time spent with the OPO coordinator was a strong
factor associated with the decision to donate. Ensuring that all potential
donor families meet with an OPO representative, whether or not the HCP believes
the family will donate, may increase the number of organs donated. Our results
provide empirical data in support of the Health Care Financing Administration
(HCFA) regulations requiring contact of the OPO when a potential organ donor
Our results further suggest that HCPs should limit their role to ensuring
that the OPO staff is called early in the process and work under the direction
of the OPO staff to optimize the donation request. Further research should
investigate whether the role of the HCP should be limited to simply the introduction
of the family to the OPO staff person.
Incomplete or inaccurate information about the donation process may
limit consent. The psychological literature on donation stresses the relationship
between allaying individuals' fears regarding the donation process and the
propensity to consent to donation.23- 27
Our results indicate that family members want information about the costs
of donation, which organs can be donated, and the effect of donation on the
funeral arrangements (especially disfigurement of the body)—topics that
HCPs might be reluctant to raise. We suggest that HCPs should introduce these
issues and address any possible concerns or fears directly. Many of our respondents
reported concerns or misinformation about these issues, which they did not
share or discuss with any of the HCPs or OPO staff at the hospital. Discussion
and correction of common fears and misinformation about organ donation should
be part of the organ donation request process.
Several limitations of our study should be acknowledged. First, the
study took place in northeastern Ohio and southwestern Pennsylvania. Neither
region has significant numbers of Hispanic or Asian ethnic minorities. Moreover,
although we had an overall high response rate, donor families were more likely
to participate than nondonor families, and nondonor families were more likely
to be ethnic minorities. Second, the study relied on HCPs' and families' recollections
of the donation request and may involve some recall bias. However, family
members' and HCPs' responses regarding the conversations were similar, suggesting
that recall was accurate. Third, the number of OPO staff involved in the study
was too small to characterize aspects of successful OPO requests. However,
the Association of Organ Procurement Organizations and United Networks for
Organ Sharing are currently conducting research into this subject. Finally,
current HCFA regulations require that each hospital notify its local OPO about
imminent deaths and that only trained HCPs or the OPO staff approach families
about donation. Pennsylvania passed similar legislation in 1994, the year
we began data collection, but the findings from Ohio did not differ (data
available on request). This leads us to conclude that interventions promoting
better coordination between HCPs and OPOs, as well as request processes tailored
to families' decisional needs, are still needed.
The shortage of organs for transplantation has reached a critical stage.
Our study points to the need for large rigorously conducted intervention studies
to determine the characteristics of successful requests. These studies could
test the various elements of the request process and would provide guidance
to policy makers and practitioners as they attempt to increase the numbers
of solid organs available for transplantation.