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LIVER TRANSPLANTATION 13:S65-S68, 2007

SUPPLEMENT

Public and Professional Attitudes to Transplanting Alcoholic Patients James Neuberger Liver Unit, Queen Elizabeth Hospital, Birmingham, United Kingdom

KEY CONCEPTS The discrepancy between the number of people who might benefit from liver transplantation continues to exceed the availability of donor livers available, so rationing of grafts must occur. Alcoholic liver disease (ALD) is an excellent indication for liver transplantation, with outcomes at least as good as for other indications. ALD remains a controversial indication for liver transplantation. There is no robust evidence that public disquiet over distribution of donor livers to those with ALD (even if they return to alcohol) greatly affects organ donation, although this does not mean there is no consequence of such disquiet. Numerous surveys of the general public, patients, and health care professionals indicate the these patients are thought to have lower priority for access to available liver grafts. Public education is required to demonstrate that patients with ALD are carefully selected for liver transplantation and available grafts are used with attention to equity, justice, and utility. Liver Transpl 13: S65-S68, 2007. © 2007 AASLD. The increasing discrepancy between the number of people with end-stage liver disease who could benefit from a liver transplant (with in improvement in both quality and quantity of life) and the availability of suitable livers from deceased donors means that not all those who might benefit from the procedure can be offered and receive a graft. Thus, rationing of the available organs has to occur. The often competing objectives of equity, justice, utility, and benefit have to be balanced. Different health care systems have developed appropriate guidelines. It has been recognized for many years that selected patients with alcoholic liver disease (ALD) are suitable candidates for liver transplantation with excellent outcomes, broadly similar to those grafted for other indica-

tions.1 Nonetheless, transplantation of those with ALD has generated a widespread concern among the general public, health care professionals, patients, and potential donors and their families. The reasons for this concern are multifactorial and encompass both judgmental and nonjudgmental issues, including concerns that the liver damage is self-induced and the recipient may return to a pattern of alcohol consumption, leading to graft failure or noncompliance. The actual situation is more complex, and health care professionals have developed guidelines to help select suitable recipients who not only would benefit from the procedure, but would also be at low risk of returning to a damaging pattern of alcohol consumption, whether from a direct effect of alcohol on the graft or indirect effects on extrahepatic organ damage, noncompliance, or other patterns of behavior that lead to death. Despite the observations that a return to some form of alcohol consumption is not uncommon, with current practice, graft loss from a return to alcohol consumption is small, and far less than the effect of recurrent hepatitis C viral infection. Nonetheless, the views of the public and health care professionals are important, and clinicians involved in the delivery of liver transplantation must recognize the public opinion, even if they disagree with those views. In this article, the surveys of public opinion will be discussed. It must be remembered that public opinion may not necessarily reflect current medical and ethical practice, and in some cases, there may not have been the opportunity to think through the consequences and implications of the responses.

VIEWS OF THE GENERAL PUBLIC The Oregon Study The state of Oregon undertook a widespread public debate about the use of federal funds for medical treatments.1 The public was asked, after much debate, to

Abbreviations: ALD, alcoholic liver disease; PBC, primary biliary cirrhosis Address reprint requests to James Neuberger, Liver Unit, Queen Elizabeth Hospital, Birmingham, B15 2TH, Kingdom. E-mail: [email protected] DOI 10.1002/lt.21337 Published online in Wiley InterScience (www.interscience.wiley.com).

Liver Transplantation, Vol 13, No 11, Suppl 2 (November), 2007: pp S65-S68

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TABLE 1. Public Preferences for Organ Allocation2 1000 members of the public, 200 Family Doctors (GP) and 100 Gastroenterologists were given 8 clinical cases and asked a) to select four recipients to receive one of four donor livers and b) select the least deserving of the cases. Numbers are show as % responses. Select 4 recipients Patient 68-year-old woman 9-month-old boy 21-year-old pregnant woman with large HCC 17-year-old with FHF after overdose 50-year-old man serving a long sentence for violence 45-year-old with alcoholic hepatitis 35-year-old single unemployed man 45-year-old woman with HCV acquired from IVDU 20 years before

Select least deserving

Aspect

Public

GP

Gastro

Public

GP

Gastro

Upper age Lower age Emotional

38 78 74

26 82 57

21 64 45

7 3 1

7 5 7

15 5 13

Selfinduced Prisoner

47

81

95

6

1

0

2

7

9

33

27

34

Alcohol

16

18

19

17

40

33

Value to society Previous drug use

56

67

74

2

1

0

17

41

76

10

3

0

Abbreviations: GP, general practitioners (family doctors); gastro, gastroenterologists; HCC, hepatocellular carcinoma; FHF, fulminant hepatic failure; IVDU, intravenous drug use. Results are shown as a percentage of responses.

TABLE 2. Likelihood of Referring or Selecting Patient for Transplantation Patients with PBC with and without a transplant, family members and friends, together with members of AASLD were given 11 case scenarios and asked whether they would refer patients for consideration for transplantation (if clinical) select patients for transplantation (if working in a transplant unit) or they felt that patients should be selected (if lay members). Figures are given as a % of responses.

Patient ALD abstinent ⬎9 mo ALD abstinent 3 mo ALD still drinking HCV HCV ⫹ ALD abstinent ⬎9 mo HCV ⫹ ALD abstinent 3 mo HCV ⫹ ALD still drinking NASH Smoker Cannabis user Methadone user

PBC relative

PBC transplant

PBC

PBC friend

AASLD

68 56 44 50 58 50 42 52 38 40 49

58 52 35 58 55 39 39 39 48 35 22

37 27 28 23 34 27 26 27 22 22 23

61 43 42 42 60 43 42 52 44 37 43

77 36 25 71 46 40 24 65 34 29 34

Abbreviations: PBC, primary biliary cirrhosis; AASLD, American Association for the Study of the Liver; ALD, alcoholic liver disease; HCV, hepatitis C virus; NASH, nonalcoholic steatohepatitis. Data are expressed as the percentage very likely or likely to refer.

rank 714 diagnoses and treatments. There has been some criticism about the approach, but the findings are relevant. Of the 714 treatments, renal transplantation and dialysis for renal failure were ranked 311 and 318, respectively. Heart transplantation for cardiomyopathy was ranked at 365. In contrast, liver transplantation for nonalcoholic and for ALD were ranked at 364 and 695, respectively. Clearly, the inhabitants of Oregon not only

differentiated between causes of cirrhosis but were not in favor of transplantation for those with ALD.

The UK Study In 1998, we published the results of a UK-wide study2 where 1,000 members of the public, 200 family doctors, and 100 gastroenterologists were questioned by a well-

LIVER TRANSPLANTATION.DOI 10.1002/lt. Published on behalf of the American Association for the Study of Liver Diseases

ATTITUDES TO TRANSPLANTING ALCOHOLIC PATIENTS S67

TABLE 3. Selection of 4 Most Likely Candidates to Be Selected Patients with PBC with and without a transplant, family members and friends, together with members of AASLD were given 8 clinical cases and asked to select 4 patients to receive a liver. Figures are shown as % of respondents. PBC Foundation Patient 3-year-old boy 69-year-old woman with PBC 18-year-old with FHF after overdose 25-year-old pregnant woman with large HCC 39-year-old man with ALD 58-year-old single unemployed man 48-year-old prisoner 56-year-old woman with HCV after IVDU 20 years earlier

Aspect

Relative

Transplant

Patient

Friend

AASLD

Young age Old age

25 27

25 22

27 20

23 12

28 10

Overdose

19

15

20

22

22

Emotional

13

0

12

8

6

Alcohol Value to society

2 13

16 2

2 15

1 14

⬍1 12

Prisoner Ex-IVDU

1 10

3 13

1 10

4 13

3 23

Abbreviations: PBC, primary biliary cirrhosis; AASLD, American Association for the Study of the Liver; FHF, fulminant hepatic failure; HCC, hepatocellular carcinoma; HCV, hepatitis C virus; IVDU, intravenous drug use. Results are shown as a percentage of responses.

TABLE 4. Patients Considered Least Deserving Patients with PBC with and without a transplant, family members and friends, together with members of AASLD were given 8 clinical cases and asked to select the person they considered least deserving to receive a liver. Figures are show as % of respondents. PBC Foundation Patient 3-year-old boy 69-year-old woman with PBC 18-year-old with FHF after overdose 25-year-old pregnant woman with large HCC 39-year-old man with ALD 58-year-old single unemployed man 48-year-old prisoner 56-year-old woman with HCV after IVDU 20 years earlier

Aspect

Relative

Transplant

Patient

Friend

Young age Old age Overdose Emotional

0 5 3 7

0 0 8 12

1 1 3 8

1 5 2 23

Alcohol Value to society Prisoner Ex-IVDU

34 6 39 7

32 6 33 5

34 4 37 9

52 5 33 3

Abbreviations: PBC, primary biliary cirrhosis; FHF, fulminant hepatic failure; HCC, hepatocellular carcinoma; ALD, alcoholic liver disease; HCV, hepatitis C virus; IVDU, intravenous drug use. Results are shown as a percentage of responses.

established public opinion survey company. Respondents were given 8 possible cases for consideration of receipt of a liver transplant and were asked to select which patients they would select for 4 available grafts; they were also asked to select the patient who they considered least deserving. The patients, all based on real patients, were selected to highlight one aspect of the dilemmas. The findings are provided in Table 1. As can be seen, there are some differences between the views of the public and the health care professionals; with respect to ALD, it is clear that there is overall little support for transplantation for those with ALD, com-

pared with other indications, although the public rates those with ALD more deserving than the health care professionals.

The Hong Kong Study A similar study was performed by Chan et al.3 in Hong Kong where the views on selection criteria of 281 participants were studied. Most participants (75%) thought that preference should be given to those with naturally occurring rather than self-induced liver disease, although the strongest priority was given to sur-


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vival and benefit; these data again reinforce the public’s view that those with a diagnosis of alcohol-associated liver disease have a lower priority than those with naturally occurring disease.

Other Groups To explore further the views of other groups with respect to ALD and transplantation, 2 other surveys were conducted: one among the membership of the PBC (primary biliary cirrhosis) Foundation, and one among members of the American Association for the Study of the Liver. The aim was to further analyze the views of the respondents on those diseases that are considered self-induced. The 3 conditions selected were ALD, obesity-associated nonalcoholic fatty liver disease, and hepatitis C cirrhosis from intravenous drug use. We also asked the respondents about transplantation for those who were current smokers, users of cannabis, and users of methadone. A similar questionnaire was administered to both groups. Respondents were asked to indicate the extent selected patients should be considered, referred, or accepted for transplantation (depending on the status of the respondent), and they were given a list describing 8 people with end-stage disease and were asked to select 4 suitable recipients, along with the recipient they were the least likely to select. The PBC Foundation is a patient support group based in the United Kingdom, but it has an international membership. In the newsletter, members, families, and friends were invited to complete the questionnaire. Respondents were divided into those who had PBC (n ⫽ 718), those who had had PBC and received a liver transplant (n ⫽ 31), family members (n ⫽ 101), and friends (n ⫽ 102). The findings are shown in Table 2.

IMPLICATIONS OF THE FINDINGS

selection of the recipient for a deceased donor liver) is usually considered unacceptable on ethical grounds. However, in a survey of just over 2000 adults aged over 15 years in the U.K. 39% stated that it was either very or fairly acceptable to state that organs must not be given to anyone with alcohol induced liver disease. (Tables 3 and 4). In my view, although it is important that the views of the public are considered when practicing of medicine, these views should not be the prime determinant of medical practice.

Effect of Public Concerns on Organ Donation After the return to alcohol (and subsequent death) of a well-known UK football player (that is, soccer player), newspapers and other publications ran articles from individuals stating they were no longer prepared to donate livers for transplantation. However, analysis by the director of UK Transplant (the UK national health service agency that supervises organ donation and utilization) failed to find any statistically significant effect of such views nationally.

CONCLUSIONS The views of the public in use of grafts for people with end-stage liver disease from alcohol are at some variance with those of health care professionals. Transplant clinicians need to be aware of these differences and ensure that public confidence remains high so that donated organs are used appropriately.

ACKNOWLEDGEMENTS I am grateful to Collette Thain, MBE, and Gillian Billett at the PBC Foundation and to the staff of the American Association for the Study of the Liver, especially Helen Proulx and Janeil Klett for their enormous help in surveying members of their organizations and collating the findings.

Ethical Dimension There are clear ethical considerations in both selection and allocation of liver allografts because of the relatively shortage of organs and the resources required. The basis for both selection and allocation need public and informed debate. It is clearly problematic when the public priorities differ from those of the health care professionals and when the principles of medical ethics are at variance to those of the public. Conditional organ donation (where the relatives place conditions on the

REFERENCES 1. Dixon J, Welch HG. Priority setting: lessons from Oregon. Lancet 1991;337:891-894. 2. Neuberger J, Adams D, MacMaster P, Maidment A, Speed M. Assessing priorities for allocation of donor liver grafts. Br Med J 1998;317:172-175. 3. Chan HM, Cheung GM, Yip AK. Selection criteria for recipients of scarce liver donors: a public opinion survey from Hong Kong. Hong Kong Medical Journal 2006;12:4046.
