Background

Rationing is ubiquitous in healthcare systems around the world.1–3 However, it is agreed that there is currently no ‘gold standard’ for managing priority setting in healthcare,4 and it has been characterised as one of the most important policy issues to be addressed in the 21st century.5 There is broad agreement from clinicians and academics alike that healthcare rationing should be undertaken as accountably and explicitly as possible,6–8 and policymakers around the world have responded to this by introducing policies to set priorities more explicitly.9 The UK has taken a leading role in this area, most obviously through the establishment of the National Institute for Health and Clinical Excellence (NICE). Moves to make decision-making as open as possible were also endorsed within the recent ‘NHS Constitution,’ which has been billed as a handbook for patients and healthcare professionals to detail their rights and responsibilities when it comes to NHS provision.10

NICE has been lauded as an international leader when it comes to more accountable priority setting in healthcare,11 12 and its methodology and organisational structure are being closely observed by policymakers around the world.13 However, NICE guidance only covers the treatment of particular health conditions, and its mandatory guidance generally only relates to the assessment of selected new healthcare technologies. Other potential sources of information about rationing for patients are the popular media, patient support groups, family and friends, and the clinical professionals involved in their care. Professional bodies representing clinicians have supported more explicit healthcare rationing for some time, and have repeatedly called for Ministers to set priorities more openly to relieve some of the responsibility on clinicians to allocate scarce NHS resources.1 14 Despite this commitment to openness as a professional body, empirical research shows that rationing openly on the ‘front line’ of healthcare provision can be very difficult, and doctors are concerned about the distress such disclosures may cause, and their implications for sustaining ongoing relationships with patients.15–18

Research over the past 30–40 years has shown consistently that patients require a great deal of information when it comes to their healthcare,19 20 and most want to be involved in clinical decision-making.21–23 Indeed, research shows that patients' requirements for information consistently outstrip the expectations of clinicians.24 25 There have been three studies that have researched the views of the public when it comes to knowing about rationing,26–28 but, prior to this study, none relating to the views of patients.29 The three studies with citizens consistently showed that the majority of the public wanted to know as much information as possible about how healthcare priorities are set, and would want to know if financial factors were affecting their own access to treatments. However, the one qualitative study with citizens showed that informants struggled to know how much information they would want if they were actually in the role of patients themselves.26

This research set out to understand patients' experiences of implicit and explicit rationing, whether they wanted to know when financial factors affected their access to healthcare, and whether they received enough information from the sources available to them.

Research design and methodology

The study took a qualitative approach, and commenced with an exploratory study with professionals working at the community level, which was used to select two clinical case studies (morbid obesity and breast cancer) to structure the remainder of the fieldwork. Sampling commenced using a snowballing approach and became more purposeful as the research was ongoing to ensure that representatives from a number of different professional groups working in the clinical areas selected had an opportunity to participate. Clinical professionals facilitated access to patients and worked with the researcher to ensure that patients with a range of views and experiences were recruited to the research, including those who had experienced implicit and explicit decision-making, and those who had accepted rationing decisions, contested them or paid for private care. Patients were recruited either by letter or in outpatient clinics. Approval from NHS ethics committees was obtained prior to any fieldwork being carried out.

Data were collected through in-depth individual interviews with 31 patients and 21 professionals. Interviews were focused by the use of a brief topic guide, although this was applied flexibly so that informants could raise issues that were important to them and provide their own narratives of providing or receiving care. Data collection and analysis were carried out iteratively to ensure that arising themes of interest could be followed up, and the techniques of constant comparison were used to elicit emerging themes, which were then examined by repeatedly revisiting data to build up conceptual links and test emerging hypotheses.30 A more detailed reporting of recruitment processes, and a full description of the data collection and analysis techniques used, can be found elsewhere.31

All informants were asked about their general views of the appropriateness of rationing explicitly, and patients were asked to relate their personal experiences of accessing healthcare. In addition, professionals were asked about particular points on the care pathway where financial factors typically impacted on decision-making, and the extent to which this information was made available to patients. Data reported below relate to those parts of interviews where patients were reflecting on whether they wanted to be told about the impact of financial factors on their care and whether they were able to obtain sufficient information, and where professionals were reflecting on the extent of disclosure routinely employed during consultations.

Results

Twenty-one professionals and 31 patients were recruited to the research, including 13 patients with morbid obesity and 18 with breast cancer. Not all patients were aware their care had been subject to financial limitations, although 15 knew they had had particular treatments withheld for financial reasons, and a further six were aware that cost had impacted on their care through waiting times or receiving a reduced quality of care. However, all were able to reflect on what information they needed about how healthcare rationing affected their access to treatments, and commented on whether they had received sufficient information.

Discussion

Nearly all informants wanted to know how financial factors affected their access to healthcare, although all recognised the emotional distress that might result from rationing explicitly, and some felt it would not be the right approach in all situations. The key source of information about rationing was clinical professionals, and many felt that the provision of all available information was an essential element of clinical advocacy. However, information needs were not always understood by professionals, and cases of implicit rationing were common.18 Most patients were understanding of the competing demands on professionals, and were usually forgiving when cases of implicit rationing became apparent. National guidance detailing entitlements to care was of surprisingly little use to patients; many had not heard of such guidance where it existed, and those who had were unable to use it to access appropriate care. Other sources of information about rationing included the popular media, patient advocacy groups, other resources available on the internet, and informal networks of support.

This study constituted the first empirical research of patients' views about knowing about rationing, and enhances our understanding of the experience of accessing NHS treatment. The use of qualitative techniques meant the research could adopt a flexible approach and allowed informants to reflect on issues that were important to them, which generated a number of insights including the broad range of information sources patients use to find out about treatment options. The structuring of the research around two clinical case studies made the research programme manageable and enabled some consistency by which to compare individual accounts. However, this also meant that the sample was heavily weighted towards middle-aged females (see table 1), and it is unknown whether other patient groups share the views and experiences reported. Additionally, the research was carried out solely through in-depth interviews, which means that conclusions are reliant on the accounts of individual patients and professionals, and no direct observation of consultations was undertaken.

Clinical professionals need to be aware that most patients want to know about rationing decisions, and to realise that they are the main gateway for the transmission of this information. Despite the fears expressed by clinicians in previous research15–17 explicit rationing did not habitually damage relationships with patients, although these were threatened if clinicians did not respond honestly to direct questioning about treatment options, or tried to control patients' reactions to rationing (eg, through discouraging protests against decision-making). This implies that clinicians need to be sensitive to patients who want to take on a consumer role within the doctor–patient relationship and not resort to a paternalistic model when they feel vulnerable due to factors outside their individual control. Additionally, professionals need to be aware that patients use a number of different information sources to research the availability of particular treatments, notably including the popular media and a variety of internet sites. This is of concern, since the use of the internet to research health conditions is increasing steeply, yet information may be incomplete, inaccurate or subject to the influence of vested interests.35 Furthermore, reliance on electronic media to distribute information may result in social inequalities in access to information,36 and therefore potentially exacerbate inequalities in access to health and healthcare.

Both clinical professionals and policymakers need to be aware that many patients in this study had not heard of NICE guidance, and of those who had, many lacked a clear understanding of its role and purpose. Even those who knew they were entitled to care according to NICE guidance were unable to use this information to advance their case for treatment. Clinicians need to be prepared to discuss the existence of national guidance and its potential utility with patients to ensure an equitable approach to information provision, and this needs to be supported by an effort by policymakers to make information about NICE guidance more accessible and useful to patients when they need to assert their right to access care. This finding also has implications for the usefulness of the NHS Constitution,10 where, given the relatively small amount of publicity awarded to its launch compared with the ongoing media attention paid to NICE guidance, policymakers are likely to encounter even greater difficulties in promoting patient knowledge and understanding.

However, there are clearly concerns raised by the prospect of making information about rationing decisions more widely available, and the impact of this on the ongoing viability of the NHS needs to be considered. In this research, the most common reason for wanting to know about rationing was to assess whether the decision could be contested or care could be accessed in the private sector, and the implications of increasing access to such information for the ongoing political and financial sustainability of the NHS clearly warrants consideration. Additionally, this research showed that knowing about healthcare rationing could be very distressing if patients had no other means to access healthcare, and explicitness may not be the right approach in all clinical contexts. This implies that professionals need to consider how to reliably elicit preferences for information, and how to make information available in a sensitive manner.

Future research in this area should focus on the experience of rationing for different patient groups and in different clinical contexts, particularly with a view to uncovering whether there are particular situations where it is better for rationing to be carried out implicitly. Observation of clinical consultations where rationing issues are discussed would be a useful means to consider how rationing issues are currently raised and explained, and to consider the effectiveness and acceptability of ongoing means of communication in this area. Other areas for future research include investigating the acceptability of more open healthcare rationing to clinical professionals, and considering the impacts of explicit rationing on doctor–patient relationships over longer periods of time. Additionally, research exploring how national guidelines on entitlements to care can be more successfully communicated to patients would be of benefit.

In conclusion, this research found that patients require detailed information on how financial factors affect their access to healthcare but often do not receive sufficient information from professionals, meaning they are frequently reliant on other sources of information. Both clinicians and policymakers need to consider how they can most sensitively fulfil the information needs of patients across the social spectrum, and the academic community should contribute to this through ongoing rigorous research into how these needs might vary by context, and what the most effective and acceptable ways are to make this information available.