Health care rationing: the public's debate

QUESTIONNAIRE DESIGN

The questionnaire was based on an earlier version developed and extensively piloted and tested for the City and Hackney survey12 and on questions from surveys in the United States.3 The original pilot survey tested respondents' understanding and acceptability of different forms of question wording and methods of prioritising on 326 members of community groups in Hackney. Full details of the process of refinement have been reported elsewhere.12 To make it suitable for use in a large national population survey, with up to 100 interviewers and around 2000 respondents, I worked with survey experts at the Office of Population Censuses and Surveys to simplify it for this national application. The number of services listed was reduced from 16 to 12, and services were listed without any examples in brackets (such examples were given in the City and Hackney survey) because examples may have caused bias. The service items were deliberately biasing—for example, treatments for life threatening illness were itemised separately for children, for people aged 75 and over, and with no age specification to assess age biases in relation to these treatments. Respondents were asked to look at a card displaying the 12 services and “choose the four services that you consider the most essential,” then they were asked to “choose the four services that you consider the next most important.” The bottom four services, by deduction, were the four remaining services, and respondents were asked to check the order—”may I just check, that leaves….” The services were coded in the order that they were selected by respondents. The frequency distributions for each service's priority codes were also converted into averages and the averages listed in order of priority to provide the ranking.

Respondents were asked about the extent of their agreement or disagreement (strongly disagree to strongly agree) with six statements about priorities (“I am now going to read out a series of statements about health priorities, please tell me whether you agree or disagree. Choose your answer from this card”). They were asked who they thought should set priorities and asked to select their preference from a precoded list of doctors at local level, the public at local level, local NHS managers, local health authorities, and politicians or government at national level (“If health services rationing is inevitable, who should have most say in setting priorities for health services?”). Finally, they were asked about how they themselves would allocate £100000 (“If you were in charge of a health authority with £100000 left to allocate for your health budgets, which of the following would you choose to do?”). These further sets of questions on priorities were developed for use in the studies in Hackney and the United States and, as with the main priority ranking exercise, subjected to the same process of wording refinement during piloting3 12 and discussions with experts in survey methodology at the Office of Population Censuses and Surveys.

The standard questions of the Office of Population Censuses and Surveys on self rated state of health (“excellent,” “very good,” “good,” “poor,” “very poor”) and on the prevalence of longstanding illness, disability, or infirmity were asked, clarified as “… anything that has troubled you over a period of time or that is likely to affect you over a period of time?” Sociodemographic data were also collected. Results were analysed by the sociodemographic characteristics of the sample and by state of health.

SOCIODEMOGRAPHIC CHARACTERISTICS OF SAMPLE

Comparisons between respondents' age and sex and mid-term estimates for the age and sex structure of the population derived from census data show that respondents were similar to the population as a whole.18 If anything, as with the general household survey,19 there was a slight under-representation of people aged under 30 years but by less than 1% in each band. Table 1 compares some of the sociodemographic and health characteristics of the sample with those of the sample members aged 16 and over from the most recently published British general household survey.19 This shows that the responders to each survey were similar in their sociodemographic characteristics, as would be expected given that sampling methods are the same and both the omnibus survey and the annual general household survey are conducted by the Office of Population Censuses and Surveys. The general household survey is able to link with census data for most of the households sampled, and analyses of the linked data show that the general household survey, and by comparison the omnibus survey, slightly under-represents people who live in London (by <1%) and people living in single occupancy households in comparison with households with two or more people (the non-contact rate was 5.3% in comparison with 2.6% for the latter). Otherwise, the only notable difference is with the proportion who reported a longstanding illness, which is lower in the omnibus survey. Apart from fluctuations in affirmative responses by month of questioning, the total proportion of people reporting a longstanding illness over time is fairly stable in surveys conducted by the Office of Population Censuses and Surveys. The omnibus staff suggested that the difference arose between these two surveys because the question was asked at the end of the omnibus questions rather than at the beginning and was not in the context of a battery of questions about respondents' own health. It was also asked after complex questioning on health service priorities, perhaps leading respondents with milder conditions to reconsider whether they should be labelled as a “longstanding illness, disability or infirmity.”

PRIORITISATION EXERCISES

Table 2 shows the frequency distributions and the mean priority rankings for the 12 services and treatments. The table shows that the highest priority (rank 1) was accorded to “treatments for children with life threatening illness,” the next highest priority (rank 2) was accorded to “special care and pain relief for people who are dying.” “Preventive screening services and immunisations” were ranked next highest (3). “Psychiatric services” was given a middle ranking (6) as was “high technology surgery” (7); “health promotion” was given a middle to low ranking (8). The lowest priorities were assigned to “treatment for infertility” (11) and “treatment for people aged 75 and over with life threatening illness” (12).

A further question on attitudes was asked in which respondents were asked if they strongly disagreed to strongly agreed (on a five point scale) with each of six statements. Table 3 shows the responses to these statements. Most respondents agreed or strongly agreed that high cost technology should be available to all, regardless of age, which somewhat contradicts their bottom ranking of treatments for people aged 75 and over with life threatening illness (table 2), illustrating the complexity of prioritisation by age group. In agreement with earlier research,12 however, most respondents agreed or strongly agreed that the patient's quality of life should be considered. More consistent with the priority ranking exercise of the 12 services, half (979) of respondents agreed or strongly agreed that if resources are to be rationed then higher priority should be given to treating the young rather than elderly people.

Table 3 also shows that respondents were more evenly divided on whether people who contribute to their own illness (for example, through smoking, obesity, or drinking) should have lower priority for health care, although 42% (842) agreed or strongly agreed with this. Most respondents agreed or strongly agreed that the responsibility for rationing spending on health care should rest with doctors rather than managers, health authorities, or the government, echoing a similar direct question asked (see below). Consistent with this again most people disagreed or strongly disagreed with the statement that the government should issue guidelines to doctors about rationing lifesaving treatments.

PRIORITY SETTING

Respondents were asked who should set priorities and shown a precoded list: 56% (1104) said “doctors at local level,” 19% (377) said “local health authorities,” 17% (336) said “the public at local level,” 5% (89) said “local NHS managers,” and 3% (61) said “politicians and the government at national level.” In reply to a separate question 88% (1739) said that they thought that “surveys of the general public's opinions, like this one, should be used in the planning of health services,” 7% (149) disagreed with this, and 5% (91) said that they did not know.

They were also asked how they themselves would allocate £100000. Seventy one per cent (1393) of respondents selected “a health screening and education programme which could prevent a large number of people needing lifesaving operations in the future (for example, screening for cancers)” and 26% (521) selected “12 extra immediate lifesaving operations this year (for example, heart bypass)”; (3%: 65 said they did not know).

There were few associations between health service priorities and sociodemographic characteristics, although those that were found did make theoretical sense. For example, 44% (426) of people aged between 16 and 45 prioritised as their first choice “treatments for children with life threatening illness,” in comparison with 26% (218) of people aged between 45 and 75 and 21% (30) of people aged 75 and over (χ²=79.29; df=2; P<0.001); and whereas just 1% (15) of people aged under 75 years prioritised as first “treatments for people aged 75 and over with life threatening illness,” 10% (14) of people aged 75 and over prioritised this as first (χ²=75.13; df=1; P<0.001). Forty six per cent (300) of people with one or more children aged under 16 and 28% (375) of those with no children ranked as first “treatments for children with life threatening illness” (χ²=64.77; df=1; P<0.001).