4.1.1 Resources and responsibility

Patients have been given explicit statements of their rights, such as the Human Rights legislation in the year 2000. Rights are expressed both in general terms and in detail, as individual problems have necessitated clarification of patients' rights in particular circumstances. For example, following the discovery that hospitals had received expenses for passing thymus tissue to pharmaceutical companies, the Secretary of State, Alan Milburn, said that 'above all for trust to thrive there has to be informed consent. Not a tick-in-the box consent régime but consent that is based on discussion and dialogue, for consent is actively sought and positively given.' In this book it has been argued that patients also have rights to resources that would allow them to manage their care to a much greater degree than is possible at present. With rights, however, come responsibilities.

4.1.2 Pre-consultation prep and post-consultation homework

Not all patients will wish to avail themselves of the responsibilities and resources that have been described. However, the fundamental contract between patient and clinician in the 21st century should start with the assumption that the patient is competent and responsible, providing they are given the resources to exercise that responsibility. There is a need to recognise that some patients would want to ask the clinician to take responsibility for, among other things, managing their records, arranging all aspects of their care, and taking the lead in decision-making. However, many patients would like to be more involved and to take more responsibility themselves. For those patients who wish to use the resources there will, however, be expectations: they will be expected to prepare for the consultation and, if necessary, do homework after it.

4.1.2.1 Pre-consultation prep

The average consultation in primary care is eight minutes; in secondary hospital care, it is somewhat longer, but in both settings the time is inadequate for complex decision-making. Even though clinicians try to set aside time for longer consultations when they know difficult decisions have to be made, it is often impossible for all relevant issues to be discussed in this period of time. This is particularly so if the patient does not understand the basic language and concepts, because not everyone is well informed about their body, or the process of care.

The resourceful patient would therefore be expected to prepare for the consultation by reading material available on the Web and by ensuring that all the terms, concepts and options that may come up during consultation are understood. The preparation that the patients need depends upon the complexity of the decision they face and the level of understanding they have of health and disease, and basic biology. Using World Wide Web technology, it is relatively simple to ask patients what newspaper they read as a measure of general reading level, and questions about medical terms and concepts to appraise their level of biomedical literacy. On the basis of this appraisal, patients could be offered material to prepare them for the consultation. This could range from videos of patients talking about the decision, and how they had come to make it, to an overview of the authorities, good and bad, right through to the original scientific papers on which medical practice is currently based. Telephone coaching could also be offered. The World Wide Web allows the reader to access detailed information easily and quickly, and in the UK it has been decided that although NHS Direct Online will be offered as the first point of access for patients, all patients will be eligible to access the National electronic Library for Health, prepared primarily for professionals, if they want to know more.

Patients, of course, already have access to the World Wide Web. The difference is that in the context of a health service that expects and supports resourcefulness, the resourceful patient would be using the same information as the clinician. It might be necessary for patients to check that they had understood all the options by testing themselves with standardised questions, so that they could spend more time during the consultation on areas which were still unclear, or perhaps access different ways of explaining it before the start of the consultation. This may sound ambitious, but it does not take months and years of preparation to understand medical documents, or concepts such as the function of the gall bladder or levels of cholesterol.

Furthermore, a systematic review of 22 studies of interactive computerised patient education came to the conclusion that, when used to complement clinical encounters, these techniques improved both the process and outcome of care. Interestingly, they also concluded that 'patients seemed more willing to confide in computers than in human interviewers, possibly because the computers were perceived as non-judgmental.' (1)

Helping people prepare the questions they want to have answered will make life better for clinicians and patients but the limits of the consultation, even with good preparation, should not be underestimated, and post-consultation homework may be required.

4.1.2.2 Post-consultation homework

There is good evidence that, not surprisingly, patients and carers cannot remember everything that is discussed during the consultation. Some clinicians already use cassette recorders to provide the patient and their family with a taped record of the consultation, and this practice is recommended in the guides to improve cancer services in the UK. With new generation palm-tops, this will be easy to do routinely. The patient could be asked to do further work at home before reaching a decision, either to ponder in greater depth on the options considered in the pre-consultation preparation and covered in the consultation, or to think about a new option raised during the consultation. To help with this, the patient could be given written information (on paper or on the Web), a recording of the consultation, and details of a telephone or e-mail decision support service.

4.1.3 The e-consultation

The electronically enhanced consultation, either a face-to-face consultation with prep and homework or an e-mail consultation, described in the Vignette at the end of this book, will allow better decision-making if patients are given resources to accept their responsibilities.

4.1.4 The resourceful patient is nothing new

It has been customary to describe patients as 'highly dependent' if they have been receiving domiciliary care for an hour or two, seven days a week. However, such patients are still without care support for up to 22 hours a day. The resources these people have are limited and largely personal - courage, hope, and a sense of humour. A large independent income also helps, but few have that. However, even those without financial wealth cope remarkably well; with the resources described in this book, patients could cope even better over a wider range of issues than self-care. The resources that patients have called on in the past, resilience and courage, can now be complemented by a range of other resources, perhaps the most important of which is research evidence. The following testimony of one patient demonstrates the importance of this, when he asked (and answered) the question, 'How should I interpret differences of opinion among my medical advisers?' (2)

In the early 1990s, I broke my ankle while on holiday in the USA. The orthopaedic surgeon I saw there put my leg in a temporary splint. He said that, after the soft-tissue swelling had subsided, the lower leg would be put in a plaster cast for six weeks. At the fracture clinic in my hometown a couple of days later, the orthopaedic surgeon dismissed his American colleague's prescription. Putting the leg in plaster was wholly inappropriate. What was I to make of these differences of opinion? My request for references to good review articles on the natural history and management of fractured fibula was ignored.

The patient's approach is to find a systematic review of the research evidence, and then ask the questions:

• Am I sufficiently different from the people included in the review that the evidence can be dismissed confidently as irrelevant to me?
• Are the interventions available to me so sufficiently different from those in the review that the evidence can be dismissed confidently as irrelevant to me?
• Are the outcomes relevant to me sufficiently different from those in the review that the evidence can be dismissed confidently as irrelevant to me?

He addresses the difficult issue of how one should react to health professionals who shun evidence from systematic reviews of research, and concludes by answering his original question.

Next time I break my ankle I hope that I and my professional advisors will be able to consider the results of systematic reviews of controlled trials comparing lower-leg plastering with strapping for fractured fibula, paying attention to outcomes that are likely to be important to me. Often, the information I would value will not be available, but that is not a reason for ignoring any information that is available. Furthermore, if systematic reviews reveal that there is inadequate evidence to support a clear choice between treatment alternatives, I want to be offered the opportunity to participate in randomised comparisons of the alternative approaches.

Some people might refer to this process as evidence-based patient choice. Whatever it is called, it is motivated in my case not by some unthinking allegiance to a new fad, but by naked self-interest, informed by my professional work over the past three decades.

I have referred to examples of patients who have suffered and died unnecessarily because clinicians have ignored existing research evidence. It is undoubtedly the case that a great deal remains to be done to help all clinicians access reliable, up-to-date information from research, but the practicability of using available evidence in day-to-day clinical practice has been demonstrated.

People who imply that I and other patients should be wary of adopting this approach to the use of research evidence need to show me that, on balance, our approach is less likely than theirs to result in our receiving good healthcare. I shall certainly require something more substantial from them than polemical defences of the status quo - and I shall try to avoid ending up receiving care from any of them who are clinicians.

Although this patient is exceptionally well informed for the year 2000, this level of confidence and competence may be common by 2020.

4.1.5. Giving patients resources and responsibility for self-management

Throughout this book we have focused on decision-making and decision-taking but once the decision has been made to institute treatment, patients can be given resources and responsibility for looking after themselves, seeking help only when problems arise. This has long been the case with chronic diseases such as diabetes or asthma but recent evidence demonstrates that the patient can take charge of recurrent episodes of illness.

A study reported in 2001 demonstrated that young women were able to control recurrent attacks of upper urinary tract infection. (3) The research team showed patients how to obtain a clean urine specimen and send the specimen to the laboratory. Patients were also given antibiotics to take if symptoms of urinary tract infection developed. Thus, women in the study who diagnosed that they had a urinary tract infection as a result of the development of symptoms, collected a urine sample and started a course of antibiotics. More than 90 percent of the proven episodes if urinary tract infection were cured without important adverse effects and without the involvement of a clinician, and nearly all of the women who were asked reported that they were confident about managing future urinary tract infections in this way.

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