The Resourceful Patient

4.4 Shared decision-making and patient-centred care

Things cannot go on in the same old way. Health care has never been so effective, as measured objectively, or so much criticised and self-criticised, as measured subjectively.

A leader in the British Medical Journal (1) by its bold and perceptive editor, Richard Smith asks, 'Why are doctors so unhappy?', and answers this question by saying that there is a 'bogus contract' between doctor and patient and that this bogus contract needs to be replaced by a new contract. His elegant analysis of the bogus contract and his proposal for a new contract is summarised in the box below (Table 15).

Table 15: Doctors and patients: redrafting a bogus contract

The bogus contract: the patient's view

  • Modern medicine can do remarkable things: it can solve many of my problems
  • You, the doctor, can see inside me and know what's wrong
  • You know everything it's necessary to know
  • You can solve my problems, even my social problems
  • So we give you high status and a good salary

The bogus contract: the doctor's view

  • Modern medicine has limited powers
  • Worse, it's dangerous
  • We can't begin to solve all problems, especially social ones
  • I don't know everything, but I do know how difficult many things are
  • The balance between doing good and harm is very fine
  • I'd better keep quiet about all this so as not to disappoint my patients and lose my status.

The new contract

  • Both patients and doctors know
  • Death, sickness and pain are a part of life
  • Medicine has limited powers, particularly to solve social problems, and is risky
  • Doctors don't know everything: they need decision making and psychological support
  • We're in this together
  • Patients can't leave problems to doctors
  • Doctors should be open about their limitations
  • Politicians should refrain from extravagant promises and concentrate on reality

The importance of perception cannot be underestimated. Doctors in both the United States and the United Kingdom believe that they have less time for each patient, yet objective measures, described in an article in the British Medical Journal, show that time spent with patients is increasing in both countries. (2) This article, entitled 'How should hamsters run?', summarises the impression that doctors have of themselves as being like hamsters in a wheel.

The position is serious but not hopeless. New technologies, such as e-mail consultation as described in the hamster article, offer new opportunities for working in different ways.

Of even greater importance than the need to deliver the old-style consultation in new and slicker ways, however, is the need to redefine the consultation and the practice of medicine. Furthermore, this requires not only a broader definition of the concept of medicine as embodied, for example, in the concept of integrated medicine (3), but also a fundamental realignment of the relationship between clinician and patient, sometimes called 'patient-centred care'.

4.4.1 Patient-centred care

Even allowing for the fact the past is often viewed through rose-tinted spectacles, many people talk about an era when they had better relationships with the clinicians who treated them. This was, however, a time in which the patient was clearly subservient to the clinician (Figure 13).

figure 13

In the past ten years, clinicians and patients have drifted into a more adversarial relationship. Part of the reason for this is that patients have changed and new cohorts of patients who have grown up in an era of consumerism, suspicious of modern science, do not want a return to the subservient relationship. For the 21st century the relationship will evolve to become one of partnership between, on the one hand, healthcare organisations and clinicians and, on the other, patients and their representatives (Figure 14).

figure 14

The balance differs from patient to patient and clinician to clinician, and the relationship between each patient and clinician lies on a continuum. In some relationships, at the left-hand of the spectrum (Figure 15), the patient will bear more responsibility; but in all the consultations decision-making will be shared.

figure 15

The definition of 'patient-centred care' varies from one culture to another but certain common themes emerge, embodied in five questions published in a paper developed under the sponsorship of the American Academy on Physician and Patient (4). The five key questions are:

  • Who is this patient?
  • What does this patient want from the physician and the medical team?
  • How does the patient experience this illness?
  • What are the patient's ideas about the illness?
  • What are the patient's main feelings about the illness?

Although this approach was developed in family practice, it is of relevance and importance to all aspects of health care and clinical practice. Central to the development of patient-centred care is a commitment not only to give high priority to the patient's view of the problem, and the health service with which they are interacting, but also to promote shared decision-making. Better organised patients

This book has focused on the consultation because that is where most crunch decisions are made between the clinician and patient. Outside the consultation the clinician, however, is a member of, and is supported by, a number of organisations and societies, whereas the patient is usually a lone agent supported by an informal network of family and friends. The informal network can, of course, be very powerful; love and concern are strong sources of support, but it is usually poorly informed with few resources. These informal networks are now complemented by well organised 'patients' groups.

The growth of these groups, sometimes called mutual aid societies, has been one of the striking features of healthcare in almost every disease or health problem in the last two decades of the twentieth century. Some are large and well funded, usually because they deal with common problems such as diabetes or heart disease, whereas those which support people with a rare disease, or their carers, depend largely on the resources provided by fellow sufferers, usually supported by the leading doctors who have a special interest in that problem. The smaller organisation may sometimes join a larger umbrella one, such as the Long-Term Medical Conditions Alliance or Contact a Family, and the Patients' Forum now acts as the one focus for all this activity with its remit being to:

  • promote wider discussion of current health issues among the whole raft of organisations representing patients and carers;
  • improve arrangements for communication, timely consultation and liaison between the health consumer network and Government, and relevant societies and professional organisations.

These societies offer the opportunity for institutional shared decision-making to complement individual shared decision-making in the consultation. Leading clinicians are often influential in these societies, many of which also raise money for research, and, increasingly, representatives from the societies are involved by the professions and government in their committees and working groups. In 2001, for example, that venerable institution, the Royal College of Physicians, appointed the Chief Executive of the patients' group Diabetes UK to chair an influential committee. Patients are now not only better informed but also better organised but that offers the medical profession an excellent opportunity for partnership.

4.4.2 Learning from Bristol

On 17 January 2002, the Secretary of State for Health, Alan Milburn, presented the government's response to the report of the public inquiry in children's heart surgery at the Bristol Royal Infirmary, known as the Kennedy Report. The Department of Health's response, Learning from Bristol, dealt with all of the recommendations made in the Kennedy Report, emphasising that they were going to put patients at the centre of the NHS and 'improve quality, reliability and the range of information which supports decision-making.'

The report calls for a culture of openness and honesty, and makes specific recommendations about the need for patients to be involved in decision-making. The report says patients 'should be offered full, accurate, understandable and timely information about their condition, its prognosis, the treatment options, and the associated risks and benefits.' In addition, patients 'should also be offered understandable, time accurate, relevant information about the quality of care available to them in a particular NHS organisation, and how it compares with standards of good quality and performance elsewhere. This should include information about the outcomes of care, as well as information about other relevant aspects of quality, such as patients' experience.' Whenever possible, patients and their families 'should have a chance to take information away with them, to reflect upon information, and to ask questions. The Department also recognises that steps have to be taken to recognise and support patients for whom greater knowledge causes or increases anxiety and endorse the principle of support by encouraging patients to take another person with them to the consultation.'

Because of the content and context of the Kennedy Report, it is relatively light on patient responsibilities, but if patients have these resources, then they too have responsibilities and can participate and share in decision-making.

4.4.3 Shared decision-making

The Picker Institute, developed in Boston, is committed to measuring the experience of patients, rather than their degree of satisfaction, because:

  • satisfaction is determined not only by the quality of the service but also by the expectations of the patient, whereas
  • patient experience provides a direct measure of service quality

What emerges from Picker Europe, for example through its work on the national survey of patients in the National Health Service, is that patients feel they are not sufficiently included in decision-making. This led a group based on Picker Europe to propose that shared decision-making should be an objective of clinical practice and healthcare. Shared decision-making, however, is only one element of patient-centred care, defined in a leader in the British Medical Journal as care which 'took into account the patient's desire for information and for sharing decision-making, and responding appropriately'. (5)

The BMJ editorial addressed three questions:

  • do patients want it?
  • do doctors practise it?
  • what are its benefits? Do patients want patient-centred care?

The study on which the BMJ editorial was based (6) found, like many other studies, that patients do want patient-centred care which:

'explores the patient's main reason for the visit, [their] concerns and need for information;

seeks an integrated understanding of the patient's world - that is, their whole person, emotional needs and life issues;

finds common ground on what the problem is and mutually agrees management;

enhances prevention and health promotion;

enhances the continuing relationship between the patient and doctor.'

Some patients want to understand fully and to be in control (7, 8); the majority want more control and involvement than they get at present. Do clinicians practise it?

Because patient-centred care is a spectrum, it is hard to answer this question categorically. Almost all clinicians try to practise patient-centred care but with varying degrees of success, as perceived by the patient. Furthermore, many doctors now try to tailor their decision-making to take into account the patient's desire for patient-centred care and this is a difficult thing to do. One study found that the desire for a patient-centred approach with shared decision-making was highest in patients who were:

  • worried
  • anxious or depressed
  • unemployed

Patients who feel vulnerable want the doctor to focus on the whole person; those who have a clear diagnosis, and who are not anxious or depressed, also want to be at the centre of the clinician's attention but are willing to accept that the main focus should be on the disease. Does it lead to a better outcome?

The answer is positive; patient-centred care is better for patients, clinicians and the health service.

Of central importance in delivering patient-centred care is good communication. This was reviewed at a conference in Toronto which came to the conclusion that:

  • communication problems in medical practice are both important and common
  • the quality of clinical communication is related to positive health outcomes
  • beneficial clinical communication is feasible routinely in clinical practice and can be achieved during normal clinical encounters without unduly prolonging them
  • to become effective communicators, clinicians must master a set of skills, knowledge and attitudes.

Part of the problem lies in the language that people use, and a study of the language used in the consultation found that even when doctors were intending to practise patient-centred care and were committed to good communication, the medical jargon they used all too easily maintained the unfavourable power balance. It is not only medical terms such as 'cancer' which the patients need to understand, but also the grammar of clinical practice, and concepts such as 'risk' and 'effectiveness'.

Communication can be assisted by decision aids on paper, compact disc and on the World Wide Web and decision aids do improve knowledge and help patients be more active in decision-making without increasing their anxiety. (9)

The clinician alone, no matter how well trained, may find it very difficult to communicate well but a health service cannot be run with leaflets and Web sites alone; human contact and interaction is of central importance in health care and will remain so. There have been calls for patients to be more responsible but what is needed is for patients to be allowed the opportunity to be resourceful. Suddenly the topic is hot, both politically and in the world of research, as shown in a separate supplement to the influential journal Quality in Health Care, published in 2001 with twelve papers commissioned by the Medical Research Council on 'Engaging Patients in Decisions. (9) We already have knowledge about both the methods and the benefits of engagement. What is needed is to get the knowledge into action. Clinicians need to be better communicators and more patient focused, but before planning more investment in professional education, priority should be given to developing resourceful patients.



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