American Journal of Transplantation 2014; 14: 172177

Wiley Periodicals Inc.


C

Copyright 2013 The American Society of Transplantation

and the American Society of Transplant Surgeons
doi: 10.1111/ajt.12519

When the Living and the Deceased Cannot Agree on

Organ Donation: A Survey of US Organ Procurement
Organizations (OPOs)
W. J. Chon1,*, M. A. Josephson1, E. J. Gordon2,
Y. T. Becker3, P. Witkowski3, D. J. Arwindekar1,
A. Naik1, J. R. Thistlethwaite Jr.3, C. Liao4
and L. F. Ross3,5
1

Section of Nephrology, University of Chicago, Chicago,

IL
2
Comprehensive Transplant Center, Northwestern
University, Chicago, IL
3
Section of Transplant Surgery, University of Chicago,
Chicago, IL
4
Section of Health Studies, University of Chicago,
Chicago, IL
5
MacClean Center for Clinical Ethics, University of
Chicago, Chicago, IL


Corresponding author: W. James Chon,
wjameschon@uchicago.edu

The legal concept of first person authorization (FPA) is

based on the principle that a decision by a person with
decision-making capacity should be respected even
after he or she dies. Although the transplant community largely supports this concept, its implementation
has not been universal. We conducted a web-based
survey of all 58 Organ Procurement Organization (OPO)
executive directors in the United States to assess
OPOs procurement policies and practices in the
context of family objections. All 58 respondents
(100%) responded to our survey. All OPOs except one
have an online donor registration website. Most OPOs
(89%) (51 of 57 respondents) estimated that the
frequency of family objecting to organ donation in
cases of registered donors was <10%. No OPOs
reported the frequency to be higher than 25%. Only
50% (27 of 54) of the OPOs have a written policy on
handling family objections. Approximately 80% of the
OPOs reported honoring FPA. However, in the past
5 years, 20 OPOs (35%) have not yet participated in
organ procurement from a registered deceased donor
over family objection. Further research to identify the
barriers and possible solutions to implementing FPA is
warranted.
Keywords: Donor registration, first person authorization, organ donation, procurement
Abbreviations: AOPO, Association of the Organ Procurement Organizations; DSA, donation service; FPA,
172

first person authorization; NCCUSL, National Conference of Commissioners on Uniform State Laws; ODBC,
Organ Donation Breakthrough Collaborative; OPO,
Organ Procurement Organization; OTBC, Organ Transplant Breakthrough Collaborative; UAGA, Uniform
Anatomical Gift Act
Received 21 June 2013, accepted for publication 23
September 2013

Introduction
The shortage of transplantable organs remains a critical
problem. In 2012, a total of 6259 patients died while waiting
for an organ transplant (1). Each day, an average of 79
people receive organ transplants in the United States, but
18 individuals die while waiting (2). The demand for
transplantable organs rises at 35% a year (2,3). Although
regulatory initiatives such as the Organ Donation Breakthrough Collaborative and the Organ Transplant Breakthrough Collaborative have led to increases in the organ
donation rates in the early 2000s (4), the number of
recovered organs has remained largely unchanged at about
8000 per year over the past 5 years (2). Given the growing
gap between the number of waitlisted patients and the
number of donated organs, greater efforts are needed to
increase organ donation rates.
A longstanding challenge to increasing deceased donation
rates is the disconnect between high public support for
organ donation and the relatively low rate of organ donor
registration and donation (5). Family refusal to consent for
organ donation also remains a significant obstacle to
successful organ donation (6,7). The international figures
estimate an average family refusal rate of 3438% (8,9), and
most countries (85%) would not pursue organ procurement
if the next-of-kin objected, regardless of their consent policy
(presumed vs. explicit consent) (8). Family members often
refuse because they feel uncomfortable giving permission
for donation when they do not directly know the wishes of
the deceased. One study showed that family members
were more than six times more likely to consent to donation
when they had discussions about organ donation with
the donor in the past (10). However, in 2005, at the time of
the last national survey on organ donation, only 53% of

A Survey of US OPOs on Implementation of First Person Authorization

Americans reported that a family member had communicated their wishes about donation (5).
In 2006, the National Conference of Commissioners on
Uniform State Laws issued the Revised Uniform Anatomical
Gift Act (UAGA), which empowered individuals to consent
to donation by signing a donor card or other official
document (e.g. drivers license) or by enrolling in a donor
registry (section 4) and also restricted family authority to
override the authorization: a person other than the donor is
barred from making, amending, or revoking an anatomical
gift of a donors body or part if the donor made an anatomical
gift of the donors body or part   (section 8) (11). That is,
the legislation empowers an adult to provide first person
authorization (FPA) to consent to donate organs and/or
tissue, and it gives hospitals legal authority to proceed with
organ procurement without requiring the informed consent
of the family. FPA is based on the principle that the decision
to donate by a person with decision-making capacity should
be respected even after he or she dies. Currently, all 50
states and the District of Columbia have enacted FPA (12),
46 jurisdictions have enacted the 2006 UAGA amendment,
and five states (Delaware, Florida, Illinois, New York and
Pennsylvania) have enacted FPA legislation at the state
level. With the state of South Dakota embarking on an online
donor registry in July 2013, all 51 jurisdictions have an online
donor consent registry in operation. However, implementation of FPA has been rather slow and controversial.
The Organ Procurement Organization (OPO) community
has engaged in diverse efforts to improve the organ
consent process and to implement the FPA over the past
decade (1315). For example, some OPOs have changed
the way they approach familiesfrom asking for their
permission for procurement to expressing the OPOs goal
to honor the patients wishes (16). On rare occasions, as
recently seen in the case of Elijah Smith, a 21-year-old, hitand-run victim, OPOs have gone to court to proceed with
organ procurement from a registered organ donor whose
family objected to donation (17). In this study, we assessed
how the 58 US OPOs practice organ procurement when the
wishes of the designated organ donors and the next-of-kin
or family members do not coincide.

Methods
In cooperation with the Association of the Organ Procurement Organizations
(AOPO), we conducted an online survey of executive directors of all 58
OPOs active at the time of the survey administration to better understand
the current organ procurement policies and practices in the United States.
The study was approved by the Institutional Review Board at the University
of Chicago, which also waived written consent.

Survey development
Survey items were based on a literature review and focus group, with further
refinement provided by two experts in organ procurement (David Bosch and
Alison Smith from Gift of Hope Illinois OPO). At the request of the leadership

American Journal of Transplantation 2014; 14: 172177

of AOPO, the survey was made anonymous to encourage participation and

reduce concern that OPOs would be reprimanded for their actions. The final
survey contained 18 questions that addressed: (1) organ procurement policy;
(2) factors influencing organ procurement; (3) donor registration; (4) FPA
implementation; (5) adverse consequences of implementing FPA (a copy of
the survey is available upon request from the corresponding author). The
term, family was used to represent the next-of-kin or the durable power
of attorney for the potential organ donor.
To assess OPOs policies, respondents were asked to select one of the five
statements that best described them: (1) In most cases, follow donors
wishes; (2) In all cases, follow the donors wishes as indicated in the
official state registry or donor document; (3) Procure organs only if there is
no family objection; (4) In most cases, follow the familys wishes or (5)
Other.
To assess what the OPOs do when the decedent is a registered organ donor
but his/her family objects to organ donation, the respondents were asked to
choose one of the following three statements: (1) Inform the family of the
donors wish to donate organs and proceed with organ procurement; (2)
Try to educate the family to reach consensus toward deceaseds wishes,
but, if unsuccessful, will move ahead with procurement over familys
objection or (3) Try to educate the family to reach consensus toward
deceaseds wishes and do not proceed with organ procurement unless the
family consents. We classify OPOs that chose options 1 or 2 as FPAcompliant because both responses lead to fulfillment of the decedents
wish to have the organs procured. OPOs that chose option 3 are FPAnoncompliant.
To further explore what OPOs do in practice, we also measured how OPOs
act in specific situations: (1) what they do if they have an FPA but the family
cannot be located; (2) whether they had ever participated in organ
procurement in the face of family objection; and if yes, how often; (3) to
provide an estimate range of how often (010%, 1125%, 2650%,
5175%, >75%) they encounter family objections in the face of an FPA and
(4) whether they move forward despite family objection; and if yes, whether
their OPO had ever been subject to any litigation as a consequence.
We calculated the FPA conversion rate based on the response to the
following question, In what percentage of FPA cases does your OPO move
forward with donation? and the following choices were given: 010%,
1125%, 2650%, 5175% or >75%.
Factors influencing the decision to procure organs were ascertained.
Respondents were asked to rate six factors used in Wendler and Dickerts
survey (registered donor status, potential legal liability, adverse publicity,
state laws, impact on deceaseds family, and presumed effect on donation
rates) (18) as very likely, somewhat likely, somewhat unlikely or
very unlikely to affect their decision in FPA situation. The survey also
provided seven scenarios in which the deceaseds and the familys wishes
were discordant or unknown. For each scenario, a 4-point Likert scale was
used to rate the likelihood of procuring organs (very likely, somewhat likely,
somewhat unlikely or very unlikely).

Data collection
The survey was administered by the AOPO in June 2012. An introductory
email was sent to each OPOs executive director explaining the purpose of
the study, and a link to a commercial survey website, SurveyMonkey.com,
was included in the email. Either the executive director or an experienced
OPO employee of his/her choice was asked to complete the online survey.
Anonymity of the respondents and the OPO was assured. A reminder email
was sent to the OPO if no response was received within 2 weeks.

173

Chon et al
Statistical analysis
For statistical purposes, the categorical variables for the likelihood of organ
procurement were grouped as likely or unlikely for data analysis in both
FPA-compliant and FPA-noncompliant groups. The association between
questions was assessed with the chi-squared or Fishers exact test
depending on the number in each 2  2 table or responses. All statistical
analyses were conducted using IBM SPSS Statistics (version 19; IBM
Company, Chicago, IL); the level of significance was set at p < 0.05. If the
OPO had a donation service area (DSA) that covered more than one state and
if their responses to a question varied depending on the states they served,
the answer for the largest area was used in data analysis.

Results
Respondents/OPO DSA
All 58 OPOs completed or partially completed the online
questionnaire (100% response rate). Of the 58 respondents,
40 (69%) were either executive directors or operating
directors of the OPO and 17 (29%) were department heads
(procurement supervisors). One respondent did not answer
the question.
Thirty-four OPOs (60%) had a DSA that included only one
state, 20 (35%) had a DSA covering two or three states, and
3 (5%) had DSAs extending over four to six states. One
OPO did not provide the information. All of the questions
were asked for each state the OPO served. Only 1% of the
survey questions answered by the 23 multi-state OPOs had
state-specific answers, and in such instance, the response
for the larger area was used (data not shown).
OPOs policies/practices
When asked about the OPOs policies on organ procurement, 53% of the respondents answered that they follow
the donors wish in all cases whereas 45% said that they
followed the donors wishes in most cases. None chose
either follow familys wishes in most cases or procure
organs only if there is no objection from family.
To better characterize the OPOs actual practices, we
asked what they would do when the registered organ donor
and the familys wishes on organ donation were discordant.
Twelve of the 56 (21%) responding stated that they would
inform the family of the donors wish to donate organs and
proceed with procurement and an additional 33 of 56
respondents (59%) reported they would proceed with
procurement even if they were unsuccessful at convincing
the family members. Contrary to these FPA-compliant
OPOs, 11 of the 56 respondents (20%) indicated they
would not proceed with organ procurement unless they
had the consent of the family. Ten of the 11 OPOs in the
FPA-noncompliant group described their organ procurement policy as follow donors wishes in most cases even
though in practice they previously stated that they do not
proceed with organ procurement unless the family
consents.
174

Nearly 97% (56 of 58) of the respondents stated they would

proceed with organ procurement if the registered organ
donors family could not be located.
Half (50%) (27 of 54) of the OPOs did not have a written
policy for handling family objections. Having a written policy
was not statistically associated with honoring FPA (data not
shown).
Incidences/outcomes
Most OPOs (89%) (51 of 57 respondents) estimated that
the frequency of family objection to organ donation in cases
of registered donors was <10%. No OPOs reported the
frequency to be higher than 25%. Sixty-five percent (37 of
57 responses) of the OPOs reported they participated in
organ procurement in the face of family objections during
the past 5 years. Of these OPOs, 79% (26 of 33 responses)
stated that one to five donors were procured under these
circumstances during the past 5 years.
The self-reported donor conversion rate was much higher
for the FPA-compliant group. Excluding the one OPO that
did not respond, 37 of 44 (84.1%) FPA-compliant OPOs
versus 3 of 11 (27.3%) of FPA-noncompliant OPOs were
successfully converting >50% of the times, p 0.001.
Thirty-seven OPOs reported no lawsuits by donors
families; the remaining 21 did not provide a response.
Factors influencing OPOs implementation of FPA
Virtually all (98%) (56 of 57) of OPOs reported that the
decedents registered donor status would very likely
influence the OPOs decision to proceed with organ
procurement. Most (93%) (53 of 57) OPOs indicated that
state laws were either very likely or somewhat likely to
influence their decision. Almost half of the respondents
(49%) (28 of 57) considered the impact on the deceaseds
family as very likely or somewhat likely to affect their
decision. Less than half of the OPOs reported that the
potential legal liability, impact on family, adverse publicity
and the presumed effect on donation rates would have
very likely or somewhat likely influenced their decision
(Figure 1).
Whereas both the OPOs that honor and those that do not
honor FPA agreed that registered donor status and state
laws were likely to influence their decision to procure
organs, the groups differed on the importance of potential
legal liability (34% vs. 73% [p 0.038]), adverse publicity
(32% vs. 100% [p < 0.001]), impact on decedents family
(36% vs. 91% [p 0.001]) and presumed effect on
donation rates (18% vs. 64% [p 0.005]).
FPA case scenarios
When seven scenarios were presented, the OPOs differed
in the likelihood of organ procurement (Table 1).
American Journal of Transplantation 2014; 14: 172177

A Survey of US OPOs on Implementation of First Person Authorization

Figure 1: Factors influencing

practice of organ procurement.

OPOs

All the FPA-compliant OPOs chose very likely or

somewhat likely to proceed with organ procurement,
whereas only 45% of OPOs in the FPA-noncompliant group
chose somewhat likely when the registered donor had
family who objected to donation (scenario A) (p < 0.001).
The two groups also differed in the likelihood of procuring
organs when the deceased was a registered donor and the
family was unable to reach consensus (scenario C)
(p 0.04) or when the deceased objected to donate and
the family was either unavailable or unable to reach a
decision (scenario D) (p 0.043). On the other hand, there
was not a significant difference between likelihood of
procuring organs when the deceased was registered and
the family was not available (scenario B); or the case when
the donors wishes were unknown and the family was
either unavailable or unable to reach a decision (scenario E)
(p > 0.999 for scenario B, 0.301 for scenario E).
Donor registry
All OPOs except one (57 of 58, 98%) had online registries
for donor registration. A minority of the donor registries (19
of 57 responses or 33%) has a mechanism to notify the
donors family of the donors decision to become an organ
donor at the time of donor registration.

Discussion
Our study is the first to examine the implementation of FPA
by OPOs since the policy has been enacted in all US
jurisdictions. Wendler and Dickert (18) reported on a survey
of OPOs in 1999 prior to the enactment of current FPA
policies. They reported that 31% of OPOs followed the
next-of-kins wishes in deciding whether to proceed with
organ procurement when there was discordance between
the donor and his or her family (18). They also found that
48% of OPOs ranked the impact on the deceased family as
the most important factor affecting the OPOs choice of
standard consent practice whereas only 12% of OPOs
selected the priority of the deceaseds wishes.
We found that 80% of OPOs in the United States have
accepted FPA as their procurement policy and that
registered donor status and state laws were the most
important factors in deciding to pursue organ procurement.
However, some OPOs that have accepted the concept of
FPA still attempt to obtain the next-of-kins blessing,
although they will still procure organs even if family cannot
be located or if objection persists. While not following the
wishes of the registered organ donor is unethical (19,20),
the practice of involving the family is permissible. Although

Table 1: Comparison of the likelihood of procuring organs between the FPA-compliant and FPA-noncompliant OPOs in the settings where
the deceased and the familys wishes differ or are not known
Scenario
A
B
C
D
E
F
G

Deceased

Family

% FPA NC OPOs
likely to procure

% FPA C OPOs
likely to procure

p-Values

Registered
Registered
Registered
Object to donate
Wish unknown
Wish unknown
Wish unknown

Objects to donation
Unavailable
Unable to reach decision
Unavailable or unable to reach decision
Unavailable or unable to reach decision
Would like to donate
Objects to donation

45% (5/11)
100% (11/11)
82% (9/11)
30% (3/10)
45% (5/11)
100% (11/11)
0% (0/11)

100% (42/42)
98% (41/42)
100% (42/42)
5% (2/42)
29% (12/42)
100% (42/42)
2% (1/42)

<0.001
NS
0.04
0.043
NS

NS

FPA C, first person authorization compliant Organ Procurement Organizations (OPOs); FPA NC, first person authorization noncompliant
OPOs.

American Journal of Transplantation 2014; 14: 172177

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Chon et al

a purist might posit that seeking family assent violates the

spirit of the FPA, a pragmatist could argue that it is
reasonable to seek the next-of-kins agreement in order to
maintain a positive relationship with the community and to
respect the family in a time of great emotional distress.
What is morally and legally problematic, however, is that
20% of OPOs still accede to the next-of-kin. We found that
OPOs that violated the FPA were more concerned
about negative publicity and potential lawsuits.
According to our respondents, the incidence of family
objections to organ donation by a registered donor is quite
low (<10% for most respondents). Over the past 5 years,
65% of OPOs have participated in procuring organs even
when the next-of-kin and the deceased have differing
opinions regarding organ donation. Nearly 80% of OPOs
reported that this situation occurred one to five times,
whereas the remaining 20% reported more than five
occasions during that period. Even though the majority of
US OPOs have accepted FPA as procurement policy, it is
unlikely that full implementation of FPA by all OPOs will
produce a large increase in the number of deceased donors.
Yet, given the diminishing deceased donor rate, it is critical
that OPOs strive to make every donor count.
A closer look at the remaining 35% of OPOs that have not
participated in organ procurement from a registered organ
donor in the setting of family objection reveals two
subgroupsone that encourages families to honor their
loved ones wishes (represented by procurement rates
>75% in the majority), and the other that accedes to family
preferences (represented by low procurement rates). It
shows that the actual practices of some OPOs may not
reflect their policies.
Although all responders (n 37) to the question about
lawsuits stated that they have not had a lawsuit brought by
a donor family, over one-third of respondents did not
answer the question. Coming under an increasing scrutiny
over their performance by the Centers for Medicare &
Medicaid Services and the Organ Procurement and
Transplant Network, the nonresponse suggests that the
OPO community appears reluctant to discuss this potential
topic of controversy.

ing their preference to accede to the wishes of the living

over that of the deceased.
As our survey shows, state-specific, organ donor registries
are widely available and currently there are more than 101
million registered organ donors in the United States and this
represents 43% of all US residents age 18 and over (21).
However, only a third of the OPOs report that they have a
way to inform the registered donors family of his/her
decision at the time of donor registration. This represents a
missed opportunity for the donor to make the family
members aware of his/her decision and could alleviate the
stress the family might face when approached about organ
donation.
Although our study had a 100% response rate, there are
limitations. First, we collected de-identified data, which
prevented us from evaluating whether there were certain
factors that may be associated with the nonimplementation
of FPA. Second, defining FPA compliance as being
compliant or noncompliant 100% of the time may
oversimplify the practice of OPOs. Third, several survey
questions relied on the respondents recollection and
therefore could have been affected by recall bias. Fourth,
respondents may have responded in ways they considered
more socially appropriate. Last, although we used the same
scenarios used by Wendler and Dickert, some of these
situations are unlikely to occur in actuality (e.g. donor
objected to donation and family not available or unable to
reach a decision).
In conclusion, most OPOs in the United States support FPA
and honor the registered donors wishes; however, 20% of
OPOs still have not implemented this policy. Further
research is needed to identify the barriers and possible
solutions to promote adherence to the FPA.

Acknowledgments
The authors would like to thank Katrina Harmon, Alison Smith, David Bosch
and Mark Lockwood for their input in reviewing the questionnaire.

Disclosure
The responses to the seven possible scenarios had both
expected and unanticipated aspects. It is reassuring to
know that when the decedents wishes are not known, all
OPOs stated that they would follow the decision of the
family 100% of the time. Not surprisingly, when compared
to the FPA-noncompliant group, the FPA-compliant group
was much more likely to procure organs when the
deceased is a registered donor regardless of the familys
availability or decision. However, when it came to a
situation where the decedent was against organ donation,
and the family was either unavailable or unable to reach a
consensus, the non-FPA aligned OPOs were slightly more
likely to proceed with organ procurement perhaps reflect176

The authors of this manuscript have no conflicts of interest

to disclose as described by the American Journal of
Transplantation.

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