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James Neuberger a Liver Unit, Queen Elizabeth Hospital,
Birmingham B15 2TH, b MORI, London SE1 0HX
Correspondence to: Dr Neuberger
james.neuberger{at}university-b.umsds.nhs.uk
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Abstract |
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Objectives: To compare the priorities of the general
public, family doctors, and gastroenterologists in allocating donor
livers to potential recipients of liver allograft.
Design: Representative quota sampling of 1000 members of the general public and 200 family doctors, and a postal
questionnaire of 100 gastroenterologists.
Subjects: Respondents were given eight hypothetical
case histories (based on real patients) and asked to select recipients
for four donor livers. Cases were selected to identify controversial
areas such as extremes of age, misuse of alcohol, and intravenous
drugs. Respondents were also asked to select the least deserving case
and which of seven possible factors (time on waiting list, outcome,
age, value to society, return to work, previous use of illicit drugs,
and involvement of alcohol in the liver damage) should be used to
select patients already listed for transplantation. Focus groups were
also held to explore further the reasons for the choices given.
Results: There were considerable differences between
the three groups in the choice of the recipients, although alcohol use
and antisocial behaviour always rated low. For selection of recipients
the general public thought that, in decreasing order of importance,
age, outcome, and time on the waiting list were the most important
factors in selecting recipients; family doctors rated outcome, age, and
likely work status after transplantation and the gastroenterologists
outcome, work status, and non-involvement of alcohol in the cause of
the liver disease as the most important factors.
Conclusions: The views of the public are at variance
with those of clinicians. Further debate is required to ensure an
equitable and appropriate distribution of a scarce resource.
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Key messages
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Introduction |
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The number of patients being referred and accepted for liver transplantation is increasing. Thus, in the United Kingdom at the end of each year the number of patients waiting for a graft has increased from 83 in 1992 to 193 in 1996, despite an increase in the number of cadaveric liver transplants being done.1 Similar findings are reported from North America,2 where between 1992 and 1996 the number of patients waiting for a liver graft at the end of the year increased from 2323 to 7467 while the number of cadaveric transplants done increased from 3031 to 4012. The United Network for Organ Sharing (UNOS) has drawn up guidelines for placing patients on the waiting list 3 4 ; introduction of these minimal listing criteria has been controversial.5 In the United Kingdom there are no central guidelines for accepting patients for transplantation.
The World Health Organisation has endorsed a series of guiding principles on organ transplantation.6 The ninth principle was "donated organs should be made available to patients on the basis of medical need and not on the basis of financial or other considerations." The relative shortage of donor livers, however, means that medical need cannot be the only criterion used to select patients for transplantation. We therefore took the example of the Oregon Health Services Commission7 and sought the views of the public on perceived priorities on allocating organs to recipients. We also asked family doctors, who have close involvement with the patients, and hospital gastroenterologists, the main source of referral to the transplant centres.
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Methods |
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The questionnaire was designed by the clinicians in conjunction with MORI (Market and Opinion Research International); to ensure that the questions were understood by non-clinicians, questions were brief and simplified.
Selection of patients
Respondents were given eight case histories and asked to
select four recipients. Respondents were informed that, except where
stated, all patients would have a good chance of living a normal life
for at least another 10 years after transplantation and, except where
indicated, the liver disease was not related to alcohol. The case
histories, which had not been piloted before undertaking the
questionnaire, were selected to highlight specific problems and are all
based on patients referred to us. The focus of the question is
indicated in parentheses for simpler reporting of results.
Factors used to select listed patients
Respondents were asked to select four of seven possible criteria
that should be used for allocation.
patients who have waited longer should be
given priority
patients aged under 5 years should be given priority
those of "value to society" would get high
priority and those of less value would get lower priority
patients whose liver disease is unrelated to
alcohol would be a higher priority than those who have alcohol related
liver disease
those who are likely to return to paid work or caring for
family after transplant would get priority
patients likely to live longest after transplant
will get priority
patients whose liver disease is unrelated to an overdose or
taking illegal drugs would receive a higher priority than those whose
liver disease is related to drug abuse.
Respondent selection
General public
The fieldwork for the general public was
carried out between 11 and 14 April 1997. Personal interviews were
conducted with a nationally representative quota sample of 1000 people
aged 15 and above. The quota sample used is based on a 10 cell quota
for sex, household tenure, age, and work status. The final sample was
weighted on a series of additional factors
rim weights for social
class, standard region, unemployment within region, cars in household,
and age within sex. Of the sample, 37% were aged below 34 years, 49%
were male, 21% were social class AB, 51% class C1/C2, 28% class DE,
32% had children in the household, 61% were married or living
together, 32% had no educational qualifications, 30% had GCSE or NVQ,
and 24% A levels or above. With respect to annual household income
22% had less than £9500 and 14% above £30 000.
Family doctors
The field work was carried out by NOP
(National Opinion Polls) between 1 and 14 April 1997; personal face to
face interviews were conducted with a nationally representative sample
of 200 family doctors in Great Britain. Quotas were based on region
with one practitioner per practice; within regions the selection of
practices was random. Of the family doctors questioned, 84% were men,
47% were qualified before 1975, 43% were fund holders, 19% were in
single handed practices, and 11% were in dispensing practices. Of
the total, 32% had referred or looked after patients after liver
transplantation.
Gastroenterologists
Senior gastroenterologists
looking after adult or paediatric patients but working outside
designated transplant units and resident in the United Kingdom were
identified from the membership of the British Society of
Gastroenterology (JN); 100 were selected at random by MORI and sent a
postal questionnaire between 1 April 1997 and 12 May 1997; the response
rate of analysable answers was 78%. Of those who responded, 96% were
men and 31% started their specialist training in gastroenterology
before 1975.
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Statistics
Data from the three surveys were ranked and rankings were
correlated with the Spearman rank correlation coefficient.
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Results |
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Selection of patients
The three groups indicated different priorities (table 1). In all
three groups the man with alcoholic liver disease and the prisoner were
given low priority. There was a correlation between the rankings given
by the general public and the family doctors (r=0.88)
and between the family doctors and the gastroenterologists
(r=0.76) but not between the general public and the
gastroenterologists (r=0.48). When subjects were asked
which patient least deserved a liver, however, the patient with
alcoholic liver disease and the prisoner were the two most selected
patients (table 2). There was no significant correlation between the
rankings of the three groups.
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Criteria to select recipients
There was a clear variation in priorities between the three
groups. While the general public thought that priority should be given
to younger children, those with a better outcome, and those who had
waited longest the gastroenterologists gave highest priority to outcome
alone. The family doctors put priorities intermediate between the two
other groups (table 3).
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Discussion |
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Best use of a limited resource
The debate about rationing of health care has been focused
primarily on funding issues, although other issues are clearly
involved.
8 9
The current need for rationing of liver
transplantation has arisen not primarily as a consequence of
financial restrictions but rather because of the lack of suitable donor
organs. As with many other areas of health care where rationing has
been necessary there has been little public discussion. There is
controversy about whether the central government, local authorities,
and health purchasers are able to define the criteria for allocation of
a scarce resource or are the appropriate organisations to do
so
10 11
; the decisions about who to refer for
transplantation and who to offer a suitable graft have been left to the
healthcare professionals. The public, however, should be involved in
defining the principles underlying the allocation of
organs.12 A study in the United States found that those
members of the public who elected not to donate organs had little trust
in the fairness of organ allocation and uncertainties about the success
of transplantation.13
Which criteria should be used?
The American Medical Association listed acceptable criteria
for selection of patients for organ transplantation: likelihood of
benefit for the patient, importance of the treatment in improving the
quality of the patient's life, duration of benefit, urgency of
treatment, and amount of resources likely to be
required.14 There were five unacceptable criteria: ability
to pay, contribution of the patient to society, perceived obstacles to
treatment (such as alcohol abuse, transport difficulties, antisocial
personality), the contribution by the patient to his or her medical
condition (such as alcohol abuse, intravenous drug abuse), and past use
of medical resources. It is clear from this study that neither the
general public nor the medical profession fully share these ideals.
Public opinion
The Oregon Health Services Commission asked the public to rank 714 condition-treatment pairs.7 Liver transplantation for
cirrhosis not related to alcohol use was ranked 364 (just above hip
replacement for osteoarthritis) whereas transplantation for alcohol
related liver disease was 695 (just above in vitro fertilisation for
tubal dysfunction). In a smaller study 380 prospective jurors were
asked to distribute livers among patients grouped according to
prognosis.21 It was found that while prognosis was an
important factor in the allocation of donor livers few were willing to
base allocation solely on the basis of maximum survival. Some groups
have attempted to involve patients in the selection process for renal
transplantation, but this is not without problems.22
criminal
behaviour and drug or alcohol misuse. The general public, unlike the
clinicians, have probably not considered in depth the implications of
donor shortage; furthermore, the case histories had to be brief and
oversimplified. It was, in part, for this reason that we arranged for
two focus groups. There are methodological concerns too. We used quota
rather than random sampling; random sampling is purer but requires more
respondents and more resources. The quota sampling used has been found
to be robust and consistent over time.
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Acknowledgments |
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We are grateful to all those who helped by taking part in this survey. We thank Miss Jayne Folwarski, Queen Elizabeth Hospital, Birmingham, for facilitating the study and Mr Brian Gosschalk, managing director, MORI, for his help and support.
Contributors: JN initiated the project and developed the ideas with DA and PMacM; the questionnaires were developed with AM and MS, who conducted the focus groups and analysed the findings.
Funding: Liver Research Trust.
Conflict of interest: MORI was paid by Birmingham Liver Unit to carry out the study.
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References |
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devising a fair system.
N Engl J Med
1997;
336:
436-438
an American dilemma.
Arch Intern Med
1996;
156:
2419-2424
a survey and ethical analysis.
Can Med Assoc J
1996;
154:
337-342[Abstract].(Accepted 6 April 1998)
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