Soc. Sci..fled. Vol. 22. No. 10. pp. 1075-1080. 1986 0277-953686 $3.00 -- 0.00 Printed in Great Britain Pergamon Journals Ltd

INCREASING KIDNEY TRANSPLANTATION IN BRITAIN: THE IMPORTANCE OF DONOR CARDS, PUBLIC

OPINION AND MEDICAL PRACTICE

ALAN LEWIS and MARTIN SNELL School of Humanities and Social Sciences, University of Bath, Claverton Down, Bath BA2 7AY, England

Abstract--The Department of Health and Social Security has recently spent over three-quarters of a million pounds advertising the merits of kidney donor cards. The advertising campaign stresses that carrying signed cards requesting the removal of kidneys and other organs after death both increases the number of kidneys available and increases the number of kidney transplants that actually take place. This paper examines the relative success of the kidney donor card campaign in Britain and the nature of the relationship between a more widespread distribution of donor cards and the frequency of kidney transplantation. This is done in two main ways:

(I) Through a review of the evidence detailing public support expressed in the media and from social surveys (including original empirical work conducted at Bath University).

(2) By an analysis of previously unpublished statistical evidence made available by the Department of Health and Social Security.

The paper concludes that the battle for public sympathy towards kidney donation has largely been won and the kidney donor card campaign has been a success. However these successes perhaps deflect attention away from more important issues in the transplant equation, as the link between card carrying and increased transplantation is neither direct nor simple.

Key words--kidney transplantation, donor cards, public opinion, medical practice

INTRODUCTION

The Department of Health and Social Security has recently spent over three-quarters of a million pounds advertising the merits of carrying signed kidney donor cards [1]. Eleven million cards were distributed between February 1984 (the beginning of the cam- paign) and July 1984. The main thrust of these policy initiatives has been centred on raising public consciousness and gaining public support through a greater willingness to donate. Inherent in this initiative is the assumption that Britain's compara- tively poor record is caused by the shortfall of transplantable organs and an unwillingness to donate. These assumptions are questioned in the latter parts of the present paper.

The evidence that Britain indeed has a compara- tively poor record of end state renal failure treat- ment is strong. In a report comparing dialysis and transplantation in Europe, Wing et al. [2] recorded that 14 other European countries treated more patients per million population than the U.K. There is no evidence that the incidence of the disease is lower in the U.K. Looking specifically at kidney transplantation, the U.K. Transplant Service Review

This research was conducted with the help and assistance of the Centre for the Analysis of Social Policy, Univer- sity of Bath, Mr Hurst and Mr Paterson of the Department of Health and Social Security and Margaret Jackson of the National Federation of Kidney Patients Association. The authors also wish to thank two anonymous referees for their helpful comments.

[3], showed that 62.1 per million population were alive with functioning transplanted kidneys in England (54.3 Wales; 54.2 Scotland; 49.7 Eire). A total of eight European countries were recorded as having a better record. However, the proportion of patients receiving transplants in Northern Ireland (76%) and in Eire, England, Wales and Scotland (40-45%) was considerably higher than the average for all European countries (20%). This figure may reflect a greater awareness in the U.K., possibly related to greater public expenditure constraints, of the cost effectiveness of transplantation over dialysis as a form of treatment. Using 1983-1984 prices, the present value of extra service costs over 10 years has been estimated to be as high as £66-£70,000 for dialysis, compared to £15,000 for a successful trans- plant (Williams [4], based on Mancini [5]). Pressure has been brought to bear by vociferous sections of the medical profession because of the relatively poor record of the U.K., growing waiting lists for patients over 45 years of age, regional variations within the U.K., and the relative lack of renal centres, resources and manpower (cf. Dowie [6]; Taube et al. [7]; Challah et al. [8]). More pressure has come from the highly active and professional National Federation of Kidney Patients Association (NFKPA) .

A number of policy options for increasing kidney transplantation have been considered by the present government in the U.K. on the assumption that there is a shortage of donors. As an example the so called 'opting-out scheme' debated in Parliament in February 1984, proposed that people would be con- sidered to be prospective donors unless an objection

1075

1076 ALAN LEwis and MARr1N SNELL

was recorded--a wish to "opt-out'. There would be no need to consult the next of kin. The proposal was criticized as an infringement of personal liberty, people became concerned as to the inaccuracy of records, and this opposition, not least in the form of letters to MPs, led to the shelving of the plan. A more recent questionnaire by Moore of the views of 940 doctors in Scotland also revealed that doctors themselves were opposed to 'opting-out' schemes [9].

THE MEDIA AND PUBLIC OPINION

The media have not always been kind to the cause. The BBC Panorama programme of October 1980 'Transplants, Are the Donors Really Dead?' is a case study of the influence of opinion as portrayed in the media both on the incidence of transplantation and subsequent changes in medical practice and legis- lation. Editorials in The Lancet ( 'Panorama's lost- transplants' 6 December 1980) [10] and the British Medical Journal (5 December 1981) [1 I] both show a fall in kidney transplants following the programme. The average monthly cadaver transplants recorded were:

January-December 1979 = 66 January-September 1980 = 80 October-December 1980 = 37* January-September I981 = 65

*The period immediately following the Panorama programme.

By 1983, the second edition of a code of practice, including the diagnosis of brain death 'Cadaveric Organs for Transplantation', was drawn up by a working party on behalf of the Health Departments of Great Britain and Northern Ireland [12].

Results from social surveys have generally shown sympathetic attitudes towards kidney donations among the general public and a steady if slow growth in card carrying. The surveys reviewed here include a random survey of Great Britain by Marplan Ltd [13], a national quota sample by Gallup [14] on behalf of the British Kidney Patient's Association (BKPA) and a further national quota sample by MORI for BBC's 'That 's Life' [15] and the most recent, a previously unpublished restricted quota sample carried out by Bath University undergraduates (Lewis, [16]). In the 1979 Marplan Survey 12% of the respondents said they had a card (compared with 10% recorded by NOP in 1978). However only 6% were 'effective' card carriers in the sense that they had filled them in and carried them with them at all times. Card carrying was found to be disproportionately common among women and young people. The report speculated that card displays in health centres were more visible to women and that the increase in card carrying among the young was influenced by the enclosure of cards for those first applying for driving licences. People in professional occupations were more likely to carry cards as were those who had spent more years in education. By 1982, Gallup polls recorded 19% of their sample carrying a card and by 1984 MORI recorded a figure of 25% (although only approxi- mately half of this number had it with them at the

time). Both Gallup and MORI recorded the familiar social class differences as defined by occupation. In the MORI poll 77% were prepared to have their kidneys removed after death indicating the large number of potential donors. The main problem in increasing the carrying of signed cards was inertia. In the 1984 study by MORI only 28% were concerned about the 'brain-death" controversy and opposition to the "opting-out" scheme appeared to be softening. The 1982 Gallup poll did however show that 53% of the sample were concerned that kidneys could be removed without the recourse to the views of the next of kin. (The Human Tissues Act 196l requires only a signed agreement or an oral statement in the presence of two witnesses.)

The restricted sample reported by Lewis [16] was insufficient to make statements about the overall incidence of card carrying but was sufficient to illus- trate differences between demographic groups. Briefly the results showed that those in manual occupations and those who do not carry a card were most frequently unaware of the kidney card donor cam- paign. In unprompted responses the most popular explanation for not carrying a signed card was in- ertia, apathy and lack of thought and information. 87% of the sample considered that card carrying was a good idea. All the surveys reviewed reveal that a positive attitude towards kidney transplantation al- ready exists; the problem is the distribution of cards and getting them signed.

Attitudes towards kidney donation show few differences between people of varying ages, occupa- tions or between males and females. It seems unlikely then that social class differences in card carrying is a function of varying attitudes. It is much more likely that this is brought about by unequal visibility of card displays and in their general distribution. These and similar points have been made to the Minister Mr Norman Fowler by the NFKPA. The N F K P A favours more localized campaigns in the press, regional radio and argues for encouraging open discussions in youth groups and within the

i family.

AN EVALUATION OF THE CAMPAIGN: SOME STATISTICAL EVIDENCE

Data were made available to us showing the num- ber of donors and transplants, etc.. for each U.K. Transplant Centre for each month from January 1982 to August 1984. Including Dublin. this gave 31 Centres in total. Thus we have data for the first 6 months of the campaign, which began in March 1984, and for the previous 26 months. The following anal- ysis must therefore be regarded only as an initial attempt at evaluating the campaign since further data would be required to confirm that any trends were sustained. Because data on a monthly basis are numerically small and since reporting the actual dates of donations may be subject to delays and errors, it was decided that analysis would be based on quar- terly trends, We therefore have data for 9 quarters before the campaign and for 2 during the campaign.

Since the aim of the campaign was basically to obtain more kidney donations, the success of it can simply be measured by looking at the number of

Increasing kidney transplantation in Britain 1077

220 --

- • 200 - • i ~ A 180 - -

, ° o _ /\ ' \ ° ,_/,. / 0 140 z

t2o I I I I I I ! I I I 2 3 4 5 6 7 s 9 to ~I

All 31 centres Quor ters 1982 Q1 to 1 9 8 4 Q3

Fig. 1. Donations over time.

kidneys donated over time. It is possible that some centres were, even before the campaign, making every effort to secure the maximum number of kidneys. If so, then these centres would be unable to increase noticeably their number of kidney donations per quarter. However, without detailed data of the num- ber of deaths from various causes and the relative suitability of organ transplants, the total number of kidney donations provides a useful starting point. Figure Ishows the number of donations per quarter for the 31 kidney centres, over the time period involved.

Figure 1 shows the dramatic increase in the number of kidney donations since the start of the campaign. The average quarterly number of donors was 212 during the campaign compared to 149 for the pre- vious 9 quarters, an increase of 42%. There would appear to be some slight seasonal fluctuation, with the second quarter (in this figure March-May) occur- ring at peaks, so that the effectiveness of the cam- paign might be slightly overstated compared to a seasonally adjusted series. Nevertheless, the effect of the campaign is clear.

We now turn to differences in the effect of the campaign between the 31 centres. As might be ex- pected, there were considerable variations around the 42% average increase, ranging from a 31% decrease (Royal Free Centre) to a three-fold increase (St Mary's). The variation is shown in a histogram in Fig. 2. [We have only included in this and further tables, those centres where more than one donor per quarter was received on average over the sample period. This excludes Westminster (now closed), Chafing Cross and St Pauls/St Philips.]

7 -

6 i -

3

~ 2

Oi I I I I I 1 I Under 0 I 4 0 - 7 9 I 120-159 I 200+

0 - 3 9 80-119 160-199 2e ten t re$

I n c r e o s e ( % } i n no. o f donors / q t r .

Fig. 2. Variations between centres.

Clearly, there are likely to be a considerable num- ber of explanations as to why these differences occur. We note first, that by examining the percentage increase in donations over time, we have tried to control for geographical variations in mortality rates. etc. However, whilst one would not have expected the overall death rates within an area to change in pattern substantially over time (excluding seasonal fluctuation), it is possible that the two quarters of the campaign monitored were insufficient to overcome some random fluctuations. A fuller analysis would require assessment over a longer period.

Apart from this, we can distinguish two possible lines of argument over the causes of the differences displayed in Fig. 2. First, if it is the attitude of the public towards carrying donor cards that is im- portant, then, as seen above, geographical variations in social class, age and sex are likely to be important. The effect of the campaign would vary according to regional demographic composition. In addition, there may have been geographical patterns in the implementation of the campaign itself.

Second, if supply constraint problems are arising at the hospital end, then differences in attitudes of medical staff could be important. To resolve this question, it would be interesting to know the per- centage of kidney donations which came from per- sons who possessed a kidney donor card. If this was low, this would seem to indicate that the problems with shortage of organs due to lack of donor cards might have been exaggerated, and that campaigns should be addressed more to medical personnel than to the general public. This is not to undervalue the importance of kidney donor cards, however. We now expand this argument further.

MEDICAL PRACTICE AND DECISION .MAKING

So far we have considered mainly the willingness of the general public to carry donor cards and to donate kidneys. We have discussed the relationship between sympathetic attitudes, card carrying behaviour and the actual incidence of kidney transplantation. How- ever, this relationship is likely to be neither a simple nor a direct one. Furthermore, the sympathies of potential donors and their relatives is only part of the transplantation equation and ignores perhaps the most important factor, namely medical practice and decision making.

There is little doubt that doctors themselves are in favour of donor card schemes. Moore's survey of 940 doctors in Scotland revealed that over 90% held this view [9], and he also found widespread support for renal transplantation (over 84% in the overall Scottish sample considered it an essential NHS pro- vision). Among his conclusions was the familiar theme that any suggestion of pressure on potential donors or their relatives inhibits doctors" enthusiasm over transplant programmes. He found some evi- dence that "greater knowledge of renal transplan- tation was associated with stronger support for NHS provision of this service" (p. 24) indicating perhaps that a campaign to provide doctors with more infor- mation might encourage their co-operation in trans- plant programmes. Indeed, a plausible, if contentious conjecture (although not one suggested by Moore) is

1078 ALAN LEWIS a n d MARTIN SNELL

that donor card carrying is of little direct importance at all and that the purpose of card carrying is to increase knowledge and visibility of transplantation procedures and to convince the medical profession and staff that an enquiry of patients and relatives as to the possibility of donation will not be met with hostility.

The importance of this sensitive interaction has been further stressed in the medical literature (e.g. Clark and Whitfield [17], Jennett and Hessett [18], Jennett [19]). Thus. Clark and Whitfield argue that the most important factor is "'the diffficulty some doctors feel in approaching relatives whose only interest (as is theirs) is in the survival of the potential donor. This sensitivity is understandable and may explain why some units (even those concerned with accidents and emergency) never produce a donor" [17, p. 287]. In addition Clark and Whitfield found no mention of donor cards in case notes of a sample of 1168 hospital in-patient deaths under 80 years old. Kidneys were obtained from only 20, in 10 cases donation was refused, and 8 proved impractical. In these cases the approach seems to have been almost exclusively verbal. Of the deaths, 98 were due to subarachnoid haemorrhage, a form of death providing a good opportunity for donation.

Jennett and Hessett [18] reiterate Clark and Whitfield remarks concerning the stress and anxiety of the parties but mention other considerations as well:

"'There is no doubt that the most important determinant oF the frequency of organ donation is the willingness of medical and nursing staff caring for potential donors to initiate this process and to undertake the considerable extra work that this entails" (p. 362).

Jennett [19] has also pointed out that the reticence of medical staff may be because of some of the rushed removals of organs following cardiac arrest:

"'The days of trying to snatch organs from patients who have suffered cardiac arrest in hospital, and who had been declared dead soon after arrival at hospital are fortunately now past. The unseemly haste inevitably associated with attempting to secure organs in such situations was a major factor in alienating some doctors and nurses from organ transplantation some years ago" (p. 16).

Jennett claims (especially now the inhibitory effects of the Panorama broadcast have subsided and the code of practice for diagnosis of brain death imple- mented) that most donors are patients on ventilator machines, which allows proper and comparatively unrushed consultation with the next of kin. The Gallup poll [14] showed in a survey of 500 hospitals that some 70% of doctors involved in some capacity with the transplant procedure perceived problems in dealing with nurses and relatives. However, while these doctors expect that nurses and relatives will prove difficult, evidence from units where donation has become commonplace does not support this [19].

Given the problems of knowing the exact method by which the campaign was expected to work, it is therefore difficult and beyond the scope of this paper to evaluate the variations between centres. One poss- ible factor we did examine was the throughput of the centre, as indicated by the average number of donors per quarter over the sample period. This figure [20]

"6

0 Z

O I I Under I 1.0-3 J

ii , J, , , N , N

5 o - 7 I 9 o - , , I , 3 , 30-5 ZO-9 11-13 31 cenrres

Mean no of donors /quarter

Fig. 3. Throughput of transplant centres.

varied quite substantially between centres from less than 1 per quarter to over 13 (Fig. 3). Without further data, one cannot comment on whether costs and effectiveness of transplants vary with throughput or on whether there is any optimal 'size" of centre, but this would seem a very relevant question for further research. However, there did appear to be a signi- ficant negative relationship (correlation coefficient -0.42) between the throughput of the centre and the percentage increase in the average quarterly number of donors during the campaign.

To explain why centres with the smaller through- put tended to increase their kidney donations propor- tionately more than larger centres requires further data, and we must be content with suggesting possi- bilities. First, it is possible that larger centres were nearer capacity for performing transplants and so could not expand as much as smaller centres. Second, the Regional Health Authorities, under whose auspices all the hospitals operate, may have their own priorities for the allocation of organs where more than one centre falls under their jurisdiction. Third, the liaison between donor hospitals and the transplant centres may have already been good for the larger centres, and the campaign served primarily to improve the liaison with the smaller transplant centres. The use of transplant co-ordinators is referred to below.

We now turn to the effect of the campaign on the movement of kidneys between centres. Although a centre may receive a donor, there are often occasions when the kidneys are transferred to another centre. A detailed look at the operation of the kidney-donating process would be required to find out why this happened. Thus, for example, it may not be possible to contact persons requiring transplants, there may be no potential recipient attending the centre suitable for "matching', or there may be no staff or funds for staff allocated to carry out the transplant at that particular time. What we do know is that, on average over the sample period for the 28 centres, 45% of transplanted organs used 'imported' kidneys. Of the full 31 centres, 9 received over 60% of their kidneys from other centres, and the 2 hospitals receiving very few donors direetly--Charing Cross and St Pauls and St Philips--did in fact perform transplants by "im- porting' nearly all their kidneys. The percentages "imported" were 84 and 92% respectively, enabling an average of 3.9 and 2.2 transplants per quarter to be

Increasing kidney transplantation in Britain 1079

carried out in each hospital. Geographical proximity of centres may be a factor determining these per- centages, but this was not examined. There was some slight indication that centres with a high percentage of 'imports' carried out fewer transplants, and this may reflect the possibility that the initial 'receipt" of kidneys is through the larger centres. Looking at the trend over time, the percentage of kidneys trans- ferred remained relatively constant (with the cam- paign having no noticeable effect), although, as with Fig. 1, the figures conceal variations between centres.

CONCLUSIONS

We may distinguish three broad conclusions from our review. First, the initial 6 months of the campaign to increase the number of people carrying donor cards in Britain coincided with a 42% increase in the number of donors. From this point of view, the campaign appears to have been a success, although its effect may have been indirect, rather than through the number of card holders. There may also have been other factors at work, not accounted for in this paper.

As noted, we can by no means be certain that it was the greater number of card holders itself which led to the 42% increase. People's willingness to donate kidneys for transplantation has been favourable for some years, and the effect of the campaign may have been more on doctors and medical staff, who now believe that enquiries made of potential donors and their families are less likely to be met with hostility. Given this success, it would seem appropriate to continue to keep public awareness at a high level. Discussion groups among doctors and support staff to debate the problems, to share experiences and to investigate the most effective and sensitive forms of approach, should also be encouraged. The develop- ment of a computerized list of willing donors (i.e. those who have voluntarily 'opted-in') would lessen the consultation time at crucial moments. Whilst there is likely to be some concern among the general public as to the accuracy of these records, it avoids the problems of infringement of personal liberty and coercion perceived by the general public in the 'opting-out' scheme.

Second. analysis of the data showed that there was considerable variation in the effect of the campaign across the U.K. Whilst we were not in a position to try to explain these variations, other studies have also noted regional differences in provision (Dowie [6]). If one of the aims of the health service is to provide equality of access to treatment, further work is required in this area to ascertain exactly why the campaign had differential geographical effects.

Finally, this analysis and review would seem to suggest a review of the entire organizational process--from referral to transplant. Suitable organs removed in the local accident units must find their way to the appropriate transplant unit. and at the same time the appropriate recipient must also be informed and admitted. This is a complex operation. Such a re-assessment might cover such questions as:

(i) The most appropriate destination for notification that an organ has been removed. It is important that doctors or administrators should

know immediately what should happen to the re- moved organ. In 1982. 6 of the 26 transplant centres had transplant co-ordinators in post. and this may be a useful way forward tbr increasing the use of suitable kidneys. However, if regional equality is to be pro- moted, careful monitoring would be required to ensure that, even with 26 transplant co-ordinators, centres were all obtaining their 'fair" share of organs. Since kidneys can be transported between regions, they could be regarded as a national resource, and the use of one national co-ordinator might be examined as an alternative.

(ii) The economics of the movement of kidneys from the donating hospital to the transplant centre. Over the sample period analysed in this review 45% of the transplanted organs used 'imported" kidneys from other transplant centres. Whilst some of these journeys may not have been very tar, it would be interesting to examine the full matrix of donations and receipts. The campaign seemed to have little impact on this percentage. It may be that this level of movement is necessary if regional equality is the aim, or because of 'matching' problems, but one must be certain that inter-regional movements are part of a co-ordinated and rational process to achieve this aim, rather than a random pattern resulting from ad hoc telephone calls.

(iii) The most suitable 'size' of a transplant centre. There is considerable variation in the number of transplants carried out at each centre. An assess- ment of ideal throughput should consider how this affects expertise, the unit costs of transplant, and convenience for the patient.

(iv) The large number of kidney movements noted may be due in part to the inability to contact the most suitable recipient in the local area. A relevant empir- ical study might examine the extent to which this was the case. One obvious suggestion is for regional centres, or a national centre, to make every effort to keep track of those patients ready for transplant, particularly if they are deemed of high priority. Patients themselves should be urged strenuously to inform centres of their movements. Computerization of records could indeed provide a major enhance- ment. The pioneering work of the U.K. Transplant Service is to be commended in this regard.

To conclude, the battle for public sympathy to- wards kidney donation has largely been won. The kidney donor card campaign has been a success but perhaps deflects attention away from more important issues in the transplant equation.

REFERENCES

1. Many donors cards are multi-purpose and read: *I request that after my death *(a) my *kidneys, *eyes, *heart, *liver, *pancreas be used for transplantation or *(b) any part of my body be used t'or the treatment of others *(delete what is not applicable).

2. Wing A., Broyer M. and Brunner F. Combined report on regular dialysis and transplantation in Europe. Xiii, 1982. Proc. Eur. Dial. Transplant Ass. 20, 5-75. 198Y

3. U.K. Transplant Service Reriew (Edited by Bradley B. and Moras D.). U.K. Transplant Service, Bristol. 1982.

1080 ALAN LEWIS and M.XRTIN SNELL

4. Williams A. Economics of coronary artery bypass ,,rafting. Br. reed. J. 291, 3 August. 3_6-3,.9, 1985.

5. Mancini P. Costs o f Treating End-Stage Renal Failure. DHSS, London. 1984.

6. Dowie R. Development of resources in treatment in end stage renal failure in England & Wales. Br. reed. J. 288, 31 March, 988-990, 1984.

7. Taube D.. Winder E., Ogg C., Bewick M.. Cameron J., Rudge C. and Williams D. Successful treatment of middle-aged and elderly patients with end stage renal disease. Br. reed. J. 286, 25 June, 2018-2020, 1983.

8. Challah S., Wing A., Bauer R., Morris R. and Schroeder S. Negative selection of patients for dialysis and transplantation in the U.K. Br. reed. J. 288, 14 April, 1119-1122, 1984.

9. 640 of respondents were opposed to the idea that unless a person carried an ~opting-out' card. it would be assumed that he would have no objection to trans- plantation of his organs in the event of his death. This result and others is reported in Moore E. J. H. Organ transplantation: views of doctors in Scotland. Hlth Bull. 43, 19-26, 1985.

I0. The Lancet 2, 6 December, 1258. 1980. 1l. Br. reed. J. 283, 5 December. 1553. I98l. 12. Cadaveric Organs Jor Transplantation. A code of prac-

tice including the diagnosis of brain death. Working Party on behalf of the Health Departments of Great Britain and Northern Ireland, I983.

13. Marplan Ltd. Public Attitudes to Kidney Donation. August, 1979.

14. GaIlup Ltd for BKPA. Kidney Donors, 1982. 15. MORI Research report for BBC's "That's Life',

February, 1984. 16. Details available from A. Lewis, School of Humanities

and Social Sciences, University of Bath. 17. Clark C. and Whitfield G. Deaths from chronic renal

failure. Br. reed. J. 283, 25 July, 283-286,286-287. 1981. 18. Jennett B. and Hessett C. Brain deaths in Britain as

reflected in renal donors. Br. reed. J. 283, I August. 359-362. 1981.

19. Jennett B. Update on donor supply. U.K. Transplant Service Review, Bristol, 1982.

20. This is the figure of donations before any transfers take place.