Mandated Choice
The Preferred Solution to the Organ Shortage?
Aaron
\s=b\ Background.\p=m-\Acritical shortage of organs is perhaps the
major barrier facing transplantation today. Adopting a sys-
tem of presumed consent or mandated choice are among
the solutions proposed. Under presumed consent, organs
may be removed after death without explicit consent, un-
less the deceased had previously objected or the family ob-
jects at the time of death. Under mandated choice, all adults
would be required to decide for themselves whether they
wish to donate on their deaths and their decisions would be
controlling.
Methods.\p=m-\Tosee if educated young people would sup-
port these proposals, I carried out two surveys at the Uni-
versity of Maryland, College Park, Md, of a total of 418 stu-
dents who were at least 18 years of age.
Results.\p=m-\Anoverwhelming 90% would support man-
dated choice while a smaller percentage, just over 60%,
would support presumed consent. The vast majority believe
that the family should not be able to override the previously
expressed wishes of their recently deceased loved one. Un-
fortunately, only a minority of respondents had discussed
organ donation with their families and even fewer had
signed donor cards.
Conclusions.\p=m\Even young educated people frequently
fail to consider organ donation prospectively and this is a
major barrier to organ retrieval. While presumed consent
and mandated choice are designed to deal with this serious
problem, mandated choice seems preferable and would
likely receive widespread support. Therefore, I suggest that
a small scale trial of mandated choice be undertaken as soon
as possible in the hope of finding an acceptable system that
will quickly and efficiently increase the supply of desper-
ately needed organs.
(Arch Intern Med. 1992;152:2421-2424)
of
The abilityof manytransplantation
lives patients
established beyond question.
with
and improve the
to save
end-stage organ
the success of
disease is
Yet, this med¬
ical miracle has led to an ever-increasing demand for or¬
gans, far outstripping supply.1-2 The resulting severe organ
shortage is not due simply to a lack of potential donors, but
rather to a failure to turn many potential donors into ac¬
tual donors.3-4 As a result, there now exists an incongruous
situation wherein some patients are dying unnecessarily
while lifesaving organs are buried. Clearly, our cadaveric
Accepted for publication May 13, 1992.
From the University of Maryland School of Medicine, Baltimore. Dr
Spital is now with The Genesee Hospital, Rochester, NY.
Reprint requests to The Genesee Hospital, 224 Alexander St, Roches-
ter, NY 14607 (Dr Spital).
Downloaded From: http://archinte.jamanetwork.com/ by a Western University User on 06/11/2015
Spital, MD
procurement system, based on altruistic donations, has so
far been unable to meet our needs.2
Stimulated by this tragic state of affairs, several research¬
ers have studied the weaknesses of our present procure¬
ment system and have proposed solutions to them.5 One
of several important obstacles to maximizing organ re¬
trieval under the current system appears to be the family
consent process.2-610 Although the Uniform Anatomical
Gift Act was designed to foster voluntary organ donation
and gives individuals control over what is to be done with
their bodies after death,11 very few take advantage of this
by signing a donor card12"14; even when a donor card (or
other advance directive) is available at the time of death,
almost all organ procurement personnel still approach the
next of kin for additional approval.1314 Therefore, almost
uniformly, successful cadaveric organ retrieval involves
obtaining explicit consent from the family. Obviously, this
question can add to the family's distress during their time
of grief and devastation.2-8"10-15 Making an informed deci¬
sion under such circumstances is difficult at best. Often the
family does not know their loved one's wishes. Further¬
more, sensitive medical personnel, not wanting to add to
the family's pain, are often understandably hesitant to
raise the issue. Therefore, it is not surprising that despite
required request laws, consent is not always sought; and
despite public opinion polls showing support for organ
donation, consent is frequently not obtained.2-78 Further¬
more, the consent process can be quite time consuming,
thereby jeopardizing the quality of precious organs.
"Presumed consent" and "mandated choice" are two al¬
ternative consent systems that have been proposed to deal
with the problems noted above by shifting responsibility
away from the family and back to the individual. Both
systems are designed to encourage everyone to consider
organ donation for themselves, and are based on the
assumption that most people favor donation but fail to act
on their intentions. Under presumed consent,810-15"17 all el¬
igible adults who have not registered an objection to organ
donation are assumed to have consented, and their organs
may be retrieved on their deaths without explicit permis¬
sion. All members of the public must be informed of this
policy to have the opportunity to object, and a registry of
objections must be kept. At the time of death, in the absence
of any previous objection by the decedent, the family is
notified that the organs will be removed as per routine. The
family may object at this point if they choose and their ob¬
jection will be respected, but their explicit consent is not
required nor requested.
Under mandated choice,2-7-18 all adults are required to
decide and record whether or not they wish to be an organ
donor on their deaths. This could be accomplished by in-
 eluding the following question on all driver's license
applications or income tax returns: "Would you object to
having your organs removed for transplantation after your
death?" The goal of obtaining the license or having the tax
return accepted would be dependent on the individual
answering this question.18 The answer could be recorded
on the driver's license or entered into a central registry. A
simple procedure would allow one to indicate a change of
mind with a written directive. The individual's decision
would be controlling; when organs are collected in accor¬
dance with the decedent's previously expressed wishes,
the family would be notified but would not be able to
override their loved one's decision. Since the vast majority
of adults file tax returns and carry driver's licenses, this
system would easily reach almost all adults who could
potentially serve as organ donors.
Both of these systems could minimize or eliminate the
added stress on the family and staff resulting from the
need to consider and the need to ask for consent.2 Sim¬
ilarly, both systems would avoid potentially damaging
delays that can arise under our present time-consuming
system for obtaining consent. Furthermore, if the public
is truly supportive of organ donation, both systems
could substantially increase the donor pool. On the
other hand, some have criticized presumed consent,
suggesting that it is intrusive and therefore could con¬
ceivably even decrease the supply of organs by offend¬
ing some would-be donors.19"21 Similar concerns could
be raised regarding mandated choice. Are these fears
well founded? Only a public opinion poll can reliably
answer this question. While there have been a few pre¬
liminary surveys of public attitudes toward presumed
consent,12-2224 none has specifically targeted young, edu¬
cated adults, a prime group of potential donors. Fur¬
thermore, no previous study has investigated attitudes
toward mandated choice. Therefore, I decided to poll
university students, asking for their opinions regarding
these two proposals to increase the supply of available
organs.
SUBJECTS AND METHODS
To achieve these goals, I administered two closed-ended ques¬
tionnaires to students 18 years of age and older at the University
of Maryland at College Park, who were waiting to be seen at the
health center. The vast majority presented for minor self-limited
illness (eg, upper respiratory tract infection), allergy desensitiza-
tion, immunization, or physical examination. The surveys were
completed voluntarily and anonymously, and the students had
ample time to complete them at their leisure. Very few refused to
participate. Both surveys were accompanied by cover letters that
explained the purpose of the study and the nature of the proposed
consent system focused on in the questionnaire.
The first survey was completed in the fall of 1990 and covered
the following topics: (1) support for presumed consent (Table 1);
(2) the role of the family when a loved one had previously con¬
sented to organ donation by signing a donor card; and (3) whether
or not the respondent had signed a donor card or discussed or¬
gan donation with his or her family.
The second survey was completed in the spring of 1991 and
asked the following: (1) whether a system of mandated choice
would be supported (Table 1); and (2) whether the family should
be able to override the prestated wishes of their recently deceased
loved one. Both of the surveys asked for the respondent's age, sex,
race, and place of birth. (The questionnaires are available from me
on request.) Statistical analysis of the data was performed with the
X2 test using Yates' correction. P<,05 was considered significant.
Downloaded From: http://archinte.jamanetwork.com/ by a Western University User on 06/11/2015
Table 1.—Questions Asked in the Surveys
Survey 1
In some countries, hospitals can remove organs for
transplantation after someone dies without his or her
prior consent, unless the person had previously objected
or his or her family objects. The public is made aware of
this policy and so has the opportunity to refuse prior to
death. Would you support such a policy of "presumed
consent" in the United States?
Survey 2
Would you support a system of "mandated choice" for
organ donation, under which all adults would be
required to decide for themselves prospectively whether
or not they want to be an organ donor when they die?
RESULTS
Presumed ConsentSurvey
Two hundred eight surveys were completed. The aver¬
age (±SD) age of the respondents was 22 ±3 years (range,
18 to 50 years). Forty-six percent were male, and 54% were
female. Sixty-seven percent were white, 12% were black,
and 11% were Asian. Seventy-five percent had been born
in the United States.
Only 24% of respondents had previously discussed or¬
gan donation with their families, and even fewer, 15%, had
actually signed a donor card. Among those who had
signed a donor card, 58% had discussed organ donation
with their families, compared with only 18% among those
who had not signed a donor card (P<.05).
Most respondents, 62%, said they would probably sup¬
port a system of presumed consent, while the remainder
would not (Table 2). There was no significant difference in
the level of support for this proposal between those who
had signed a donor card and those who had not. There
were also no significant differences regarding this question
between blacks and whites, those born in the United States
and those born elsewhere, and those younger than 23 years
of age vs those 23 years and older. Nonetheless, there was
a nonsignificant trend toward less support for presumed
consent with advancing age, only 10 (48%) of the 21
respondents older than 27 years favoring such a system.
The only demographic variable that exerted a significant
effect was sex, with 67% of men but only 52% of women
supporting presumed consent (P<.05).
An overwhelming 92% of respondents indicated that if
an individual signs a donor card, volunteering to become
an organ donor after death, the family should not be able
to override this decision (Table 2). There were no signifi¬
cant differences regarding this question between men and
women, blacks and whites, those born in the United States
and those born elsewhere, those who had signed a donor
card and those who had not, and younger vs older
respondents.
Mandated Choice Survey
Two hundred ten surveys were completed. The demo¬
graphic characteristics of the respondents were similar to
those of the first survey. The mean age was 22 ±4 years
(range, 18 to 43 years). Fifty-three percent were male, and
47% were female; 69% were white, 14% were black, and
13% were Asian; 79% had been born in the United States.
The vast majority of respondents, 90%, indicated that
they would support a system of mandated choice (Table 2).
There was no significant difference in the level of support

Table 2.—Viewpoint of Respondents
Support, Oppose,
% %
Presumed consent 62 38
Mandated choice* 90 10
Should the family be able to override?t 13 87
'Mandated choice was supported by significantly more respondents
than was presumed consent (P<.05).
tThe results from the two surveys were pooled for this question.
for this proposal between blacks and whites, men and
women, those born in the United States and those born
elsewhere, and younger vs older respondents. However, as
in the presumed
toward
consent survey, there was a nonsignificant
less support with increasing age. Yet,
tendency
even among the 21 respondents over 27 years of age, 17
(81%) still supported mandated choice.
Similar to the findings in the previous survey, the great
majority, 81%, believe that if an individual has decided to
become an organ donor and signed a donor card, the fam¬
ily should not be able to override their loved one's decision
(Table 2).
COMMENT
In an attempt to alleviate the critical organ shortage,
several proposals for facilitating organ donation have been
suggested, including presumed consent and mandated
choice. Presumed consent was first suggested in the United
States more than 20 years ago16 but never gained wide¬
spread support.2 Recently there has been renewed interest
in this system, probably because of its apparent success
elsewhere. At least 13 European countries operate under
presumed consent laws and seem to come closer to meet¬
ing their needs for organs than do countries without such
laws.25-26 For example, 3 years after enacting a policy of
presumed consent in 1986, the number of available cadav¬
eric kidneys in Belgium increased by 119%.27 Similar suc¬
cess in Singapore has recently been reported.28 Despite
these encouraging results, the pros and cons of introduc¬
ing this system in our country continue to be hotly
debated.2-19-21-22
Mandated choice is a less well-known proposal, but one
that may have distinct advantages compared with pre¬
sumed consent.2-18-29 These include (1) the assurance that
virtually all adults would be aware of the system; this
avoids the possibility under presumed consent that some
who object, but fail to register out of ignorance, would
mistakenly become donors; (2) possible enhanced partici¬
pation resulting from heightened awareness of the great
value of organ donation which the system fosters; (3)
elimination of added stress for the family and staff, since
the family would not be involved in the decision to donate;
and (4) the possible elimination of the need for a central
registry of objections when the driver's license is used to
record an individual's wishes (assuming emergency and
hospital personnel are required to search for the license
when appropriate).
As has been pointed out, the theoretical risks and ben¬
efits of these and other proposed solutions to the organ
shortage have now been clearly delineated; continued idle
debate about them is not productive.22-30 What is badly
needed is an exploration of attitudes, since any unpopular
proposal, no matter how ingenious, is likely to fail.
Downloaded From: http://archinte.jamanetwork.com/ by a Western University User on 06/11/2015
A few surveys of the US public regarding presumed
consent have been published. Two early studies suggested
that the great majority would oppose such a system of or¬
gan procurement.12-23 However, apparently in neither
study was it made clear to the respondents that under
presumed consent individuals and their families are in¬
formed of their right to object to donation, and that such
objection is respected. In the absence of such clarification,
presumed consent may be seen as tantamount to a system
of organ conscription.18-31 Confusion regarding the concept
of presumed consent was confirmed in the recent United
Network for Organ Sharing survey,22 which reported that
"the difficult notion of presumed consent seems not to
have been fully understood by some responders." None¬
theless, in this survey the response rate was more positive
than in the earlier ones, with 39% supporting presumed
consent.
In this survey, I attempted to minimize such misunder¬
standing by carefully explaining each proposal and by
choosing an educated group of young respondents. Per¬
haps this explains why, in contrast to the previous studies,
a majority reported that they would likely support pre¬
sumed consent. Outside the United States, others have
found similar results. For example, the majority of those
polled in a Canadian survey thought presumed consent
was a good idea.24 Furthermore, according to the president
of the British Kidney Patient Association, 61% of those
polled in England favored presumed consent (E. D. Ward,
MBE, Hon LLD, written communication, November 4,
1991). In addition, this system is apparently well accepted
by the public in those countries with such laws in place.27-32
Interestingly, the 62% approval rate in this survey is iden¬
tical to the percentage of people in a 1985 US Gallup poll
who answered affirmatively to the statement that "even if
I have never given anyone permission, I wouldn't mind if
my organs were donated upon my death."33
Nevertheless, because education correlates with favor¬
able attitudes toward organ donation,12 the results pro¬
vided by this select group probably represent a maximal
estimate of the level of support to be expected for pre¬
sumed consent in this country. That at least a substantial
minority would oppose this system suggests that any trial
would probably be met with considerable resistance.
What about mandated choice? Although several authors
have outlined its merits,218'29-34 this study is the first to ex¬
plore attitudes toward this alternative system. The results
suggest that mandated choice may well be more acceptable
to the public than presumed consent. Thus, the vast
majority of respondents said they would support such a
policy. This was true across demographic subgroups,
although some of these were quite small. Indeed, several
respondents wrote comments indicating that mandated
choice is a very good idea.
Since our society treasures individual freedoms, the
overwhelming support for mandated choice likely derives
from the power it gives people over the disposition of their
own bodies after death. Supporting this concept of a desire
for self-determination, the vast majority of respondents
believe that the family should not be able to override the
previously expressed wishes of the potential donor. Other
surveys have reached similar conclusions.12-24-35 Neverthe¬
less, even when a signed donor card is found, organ pro¬
curement organizations still require additional approval
from the next of kin.13-14 Clearly, this approach must be
abandoned if mandated choice is to have any chance of
 succeeding; advance directives must be treated as legally
binding, in keeping with the provisions of the Uniform
Anatomical Gift Act and the wishes of the public.
A major caveat of this study is that the responses of this
young, educated group may not be representative of the
general population. Certainly this is quite possible. Nev¬
ertheless, I believe that the data are valuable for several
reasons. First, young people who die unexpectedly are
prime organ donors, making the views of this group quite
relevant.23-36 Second, even if these subjects are not fully
representative of the general population, the results of this
survey may at least provide an estimate of the maximal
level of support for the two proposals considered, thereby
suggesting which will be most acceptable and the best we
can hope to achieve through education. Finally, many of
the respondents in this study will be among the decision
makers of tomorrow, destined to become influential in
shaping future policy. These considerations probably ex¬
plain why university students have frequently been the
subjects of other surveys regarding organ donation.35"40 In¬
terestingly, one of these compared knowledge of organ
donation between university students and community
members and found similar results.37 Since knowledge is
an important determinant of attitudes, the views of stu¬
dents and the general population may be closer than
expected. Further supporting this possibility is the nearly
identical low percentage of students and the general pop¬
ulation who have signed donor cards.37 Sadly, our survey
confirmed these previous observations that even among
the young and educated, very few actually sign up.
The present organ procurement system is failing. Despite
intense educational efforts, few people consider organ do¬
nation prospectively and sign donor cards. The few who do
sign up are treated on their deaths as if the cards did not
exist.13 Presumed consent and mandated choice are two
proposals designed to circumvent these problems by trans¬
ferring control away from the family and back to the indi¬
vidual, while insisting that everyone consider organ dona¬
tion for themselves. The data presented here suggest that,
of the two, mandated choice is preferable and likely would
receive widespread support. Based on these observations
and professed public altruism, I believe that mandated
choice has great potential to increase the supply of organs,
especially if combined with an incentive to donate, such as
giving priority to recipients who previously had volun¬
teered to donate their own organs.6-22-41 Therefore, after con¬
firming these findings among a national sample, I suggest
that a small-scale trial of mandated choice be conducted as
soon as possible to see whether or not this system would
actually work. With so many lives at stake, we cannot afford
simply to continue idle theoretical debates over which sys¬
tem is best. The time for action is here.
I thank Max Spital, MD, for his helpful comments and Mary Ma-
zurick for her careful preparation of the manuscript.
References
1. Randall T. Too few human organs for transplantation, too many in need
... and the gap widens. JAMA. 1991;265:1223-1227.
2. Spital A. The shortage of organs for transplantation: where do we go
from here? N Engl J Med. 1991;325:1243-1246.
3. Bart KJ, Macon EJ, Whittier FC, Baldwin RJ, Blount JH. Cadaveric kid-
neys for transplantation: a paradox of shortage in the face of plenty. Trans-
plantation. 1981;31:379-382.
4. Evans RW, Orians CE, Ascher NL. The potential supply of organ donors:
an assessment of the efficiency of organ procurement efforts in the United
States. JAMA. 1992;267:239-246.
Downloaded From: http://archinte.jamanetwork.com/ by a Western University User on 06/11/2015
5. Spital A. Locked in dialysis: turning the transplant key. Semin Dialysis.
1991;4:265-272.
6. Kleinman I, Lowy FH. Cadaveric organ donation: ethical considerations
for a new approach. Can Med Assoc J. 1989;141:107-110.
7. MacKersie RC, Bronsther OL, Shackford SR. Organ procurement in pa-
tients with fatal head injuries: the fate of the potential donor. Ann Surg.
1991;213:143-150.
8. Matas AJ, Veith FJ. Presumed consent for organ retrieval. Theor Med.
1984;5:155-166.
9. Morton JB, Leonard DRA. Cadaver nephrectomy: an operation on the
donor's family. BMJ. 1979;1:239-241.
10. Muyskens JL. An alternative policy for obtaining cadaver organs for
transplantation. Philos Public Affairs. 1978;8:88-99.
11. Sadler AM, Sadler BL, Stason EB. The uniform anatomical gift act: a
model for reform. JAMA. 1968;206:2501-2506.
12. Manninen DL, Evans RW. Public attitudes and behavior regarding or-
gan donation. JAMA. 1985;253:3111-3115.
13. Lee PP, Kissner P. Organ donation and the Uniform Anatomical Gift
Act. Surgery. 1986;100:867-875.
14. Overcast TD, Evans RW, Bowen LE, Hoe MM, Livak CL. Problems in
the identification of potential organ donors: misconceptions and fallacies as-
sociated with donor cards. JAMA. 1984;251:1559-1562.
15. Caplan AL. Organ transplants: the costs of success. Hastings Cent Rep.
1983;13(6):23-32.
16. Dukeminier J, Sanders D. Organ transplantation: a proposal for rou-
tine salvaging of cadaver organs. N Engl J Med. 1968;279:413-419.
17. Matas AJ, Arras J, Muyskens J, Tell is V, Veith FJ. A proposal for cadaver
organ procurement: routine removal with right of informed refusal. J Health
Polit Policy Law. 1985;10:231-244.
18. Katz BJ. Increasing the supply of human organs for transplantation: a
proposal for a system of mandated choice. Beverly Hills Bar J. Summer
1984:152-167.
19. Childress JF. Ethical criteria for procuring and distributing organs for
transplantation. J Health Polit Policy Law. 1989;14:87-113.
20. Sadler AM, Sadler BL, Stason EB, Stickel DL. Transplantation: a case
for consent. N Engl J Med. 1969;280:862-867.
21. Veatch RM. Routine inquiry about organ donation: an alternative to
presumed consent. N Engl J Med. 1991;325:1246-1249.
22. Kittur DS, Hogan MM, Thukral VK, McGaw LJ, Alexander JW. Incen-
tives for organ donation? Lancet. 1991;338:1441-1443.
23. Batten HL, Prottas JM. Kind strangers: the families of organ donors.
Health Affairs. Summer 1987:35-47.
24. Corlett S. Public attitudes toward human organ donation. Transplant
Proc. 1985;17(suppl 3):103-110.
25. Cohen B. Organ donor shortage: European situation and possible so-
lutions. Scand J Urol Nephrol Suppl. 1985;92:77-80.
26. Stuart FP, Veith FJ, Cranford RE. Brain death laws and patterns of con-
sent to remove organs for transplantation from cadavers in the United States
and 28 other countries. Transplantation. 1981;31:238-244.
27. Roels L, Vanrenterghem Y, Waer M, et al. Three years experience with
a 'presumed consent' legislation in Belgium: its impact on multi-organ do-
nation in comparison with other European countries. Transplant Proc. 1991;
23:903-904.
28. Soh P, Lim SML. Impact of the opting-out system on kidney procure-
ment in Singapore. Transplant Proc. 1991;23:2523.
29. Medical technology and the law: organ transplantation. Harvard Law
Rev. 1990;103:1614-1643.
30. Spital A. Testing remedies for the shortage or organs. Ann Intern Med.
1992;116:428-429.
31. Silver T. The case for a post-mortem organ draft and a proposed model
organ draft act. Boston Univ Law Rev. 1988;68:681-728.
32. Benoit G, Spira A, Nicoulet I, Moukarzel M. Presumed consent law:
results of its application/outcome from an epidemiologic survey. Transplant
Proc. 1990;22:320-322.
33. The U.S. Public's Attitudes Toward Organ Transplants/Organ Dona-
tion. Princeton, NJ: The Gallup Organization Inc; January 1985.
34. Miller M. A proposed solution to the present organ donation crisis
based on a hard look at the past. Circulation. 1987;75:20-28.
35. Harris RJ, Jasper JD, Lee BC, Miller KE. Consenting to donate organs:
whose wishes carry the most weight? J Appl Soc Psychol. 1991;21:3-14.
36. Harris RJ, Lee BC, Miller KE. Organ donation terminology: are we
communicating life or death? Health Psychol. 1991;10:34-41.
37. Horton RL, Horton PJ. Knowledge regarding organ donation: identify-
ing and overcoming barriers to organ donation. Soc Sci Med. 1990;
31:791-800.
38. Nolan BE, Spanos NP. Psychosocial variables associated with willing-
ness to donate organs. Can Med Assoc J. 1989;141:27-32.
39. Osborne DJ, Gruneberg MM. Kidney donation: where some of the
problems lie. Injury. 1979;11:3-9.
40. Winkel FW. Public communication on donorcards: a comparison of
persuasive styles. Soc Sci Med. 1984;19:957-963.
41. Peters DA. A unified approach to organ donor recruitment, organ pro-
curement, and distribution. J Law Health. 1989-1990;3:157-187.