The Resourceful Patient

3.6 Resources - pathways and guidebooks for patient journeys

'Have you had your INR, Mr F.?'

'What's an INR?'

'It's a blood test for your anticoagulation. We need to know what the state of your blood is before you can have the operation.'

'Well, no-one ever told me I had to have a blood test.'

'Well, Mr F, I'm very sorry but you can't have your operation until you've had the blood test. We'll need to postpone it and rearrange.'

Patients make two types of journey - disease journeys and healthcare journeys. The disease journey progresses through diagnosis to treatment which leads to cure or lifelong co-existence.

The healthcare journey is punctuated by events like consultations, operations and prescriptions, and each journey is unique. The journey may be mundane or fascinating; a new branch of biography - autopathography - was described by Jeff Aronson in the Christmas 2000 edition of the British Medical Journal in which he reviewed patients' accounts of their illnesses. However, decisions and events can be identified which are relevant to every patient on a particular journey and to ensure that these are always remembered and that the clinician responds appropriately, guidelines and pathways are developed.

3.6.1 Guidelines and pathways

A guideline presents information to support a decision; a care pathway sets out all the decisions and actions that a clinician and patient should consider, or do, on their journey, or part of their journey.

Care pathways are particularly relevant to discreet parts of the journey, for example:

  • going into hospital for hip replacement
  • starting anti-coagulation
  • having a episode of renal dialysis

Care pathways have been shown to reduce errors and improve the efficiency of care, principally by ensuring that small but significant events are not overlooked by busy professionals carrying out routine tasks and procedures, and who are therefore prone to lapses in concentration.

3.6.2 Guidebooks

Most guidebooks recommend specific tours, city walks spelled out street by street, or rural tours village by village. However, most people use guidebooks in their own way, particularly when there are problems. A study of the management of asthma using the care pathway approach (10) found that many of the patients did not want to feel that they were following a pre-set pathway but did want easy access to help and support when a problem occurred.

3.6.3 Crossroads and signposts on the patient's journey

The group that has done most to develop guidebooks for patient journeys is the Harvard-based group led by Professor Al Mulley and Professor Jack Wennberg.

Mulley and Wennberg have worked for years to develop a style of patient guides involving four main stages in travelling:

  • getting ready
  • looking ahead
  • gaining perspective
  • moving forward Getting ready

The person making a decision has to think about the likely end of the journey, for example the decision to accept an antenatal screening test could finish up with a choice of whether or not to have an abortion. If the woman is implacably opposed to abortion, she should not start on the journey without knowing that abortion is a possible option at the end of it. The health care professionals must make sure they are aware of the end of the journey before the journey begins, but the patient, or, in this case, the pregnant woman, needs to be getting ready for decision-making. Looking ahead

In looking ahead the patient needs to reflect before focusing in on the decision, asking questions such as:

  • how healthy am I now?
  • what are the options that I face?
  • what would happen if I did nothing?

If patients wish to take a decision, they need more detailed focus on options. Gaining perspective

In gaining perspective the patient needs to ask questions such as:

  • what are the good outcomes of treatment?
  • what is the probability that I will get a good outcome?
  • what are the bad outcomes of treatment?
  • what is the probability that I will get a bad outcome?
  • how do I value both the good and the bad outcomes?

It is then time for the patient to move forward, making the best decision they can in the circumstances, aware of the fact that bad outcomes can follow good decisions. Moving forward

One of the areas where Mulley and Wennberg have developed the journey most clearly is the decision faced by men about whether or not to have a PSA test - a prostate specific antigen test - to detect asymptomatic prostate cancer. They have identified at least fifteen crossroads on the prostate cancer journey, one of which is the decision whether or not to accept the offer of a PSA test. When these men were given adequate information about the options, based on the principles outlines above, a significant proportion declined the offer of a PSA test, emphasising that more information does not always lead to more treatment. (11) In this way, resourceful patients make responsible decisions for themselves and for the health service.

The Foundation for Informed Medical Decision-Making produced two simultaneous interactive decision aids to help patients considering hormone replacement therapy and patients considering prostatectomy with their decisions. The evaluation of these aids were very encouraging, (12) with the authors concluding that 'an interactive multimedia decision aid in the NHS would be popular with patients, reduce decisional conflict, and enable patients to play a more active part in decision-making without increasing anxiety.'

3.6.4 The resourceful patient and the pathway

Patients should be given the same pathway as clinicians, because pathways have been shown to be effective and acceptable. The patient could be given responsibility for parts of the pathway and had Mr F in the vignette at the beginning of this chapter been given responsibility for, and authority to carry out, the INR blood test, he would have had his operation on the day planned. The clinician is meant to be the guardian of the patient, but some patients need coaching to help them cope with their journey.

3.6.5 The expert patient

People who have life-long diseases such as diabetes, for which they claim none of the rights of illness, sometimes refer to their problem not as a disease or an illness but as a condition, something they have to live with and manage with occasional help from a professional. In the United States, where patients have traditionally had to manage more of their care including its payment, self-management programmes have been studied and promoted for many years - for example, in the famous Chronic Disease Self-Management Programme at Stanford. In the United Kingdom a number of initiatives focusing on specific diseases have been developed with the lead being taken by mutual aid societies or patient organisations, as they are sometimes called - for example:

  • 'Challenging Arthritis' is the name given to the arthritis self-management course developed by the charity Arthritis Care.
  • The Self-Management Training Programme for people with depression was developed by people with manic depression, co-ordinated by the Manic Depression Fellowship.
  • A structured self-management programme for people with multiple sclerosis has been developed by the Multiple Sclerosis Society.

The Department of Health produced a report on these approaches to chronic disease management called 'The Expert Patient' and a review of the evidence about the benefit of self-management programmes commissioned for the task force which produced the report concluded that among the obvious benefits were:

  • reduced severity of symptoms significantly decreased pain
  • improved life control activity
  • improved resourcefulness and life satisfaction
Table 8: Evidence for impact of self-management programmes on service use
Chronic pain Arthritis Reduction in number of visits to health professionals (13,14)
Reduction in number of general practitioner visits (15,16,17,18,19)

Sickle cell disease
Reduction in number of hospitalisations and length of stay (20,21)
Insomnia Reduction in number of visits to specialists (19)
Sickle cell disease
Reduction in number of accident and emergency department visits (20,21)

The report made eight specific recommendations, namely:

  • to promote awareness and create expectations that patient expertise is central in the delivery of care to people with chronic disease
  • to set up a programme to develop more self-management courses and programmes
  • to identify the barriers to the uptake of self-management in the NHS
  • to integrate user-led self-management into the NHS provision of care
  • to ensure that each primary care trust has arrangements for user-led self-management programmes
  • to expand the practical support for user-led programmes
  • to change professional training so that they understand how they can support self-management
  • to establish a national co-ordinating and training resource to promote and realise the concept

The expert patient with the chronic disease will not need a guide in future. Patients will find their own way to better health.

3.6.6 The need for interpreters

The sight of two world leaders facing each other across a table, each with an interpreter at their elbow, emphasises that without interpretation, dialogue is sometimes impossible when two people meet. The need for interpretation is also common when the patient and clinician are in a consultation.

Sometimes the patient can take an interpreter to the consultation, particularly when the first language of clinician and patient are not the same. An interpreter is, however, also necessary for many consultations when both clinician and patient share the same first language. The interpreter may have to:

  • explain the meaning of anatomical terms such as gall bladder or carcinoma in situ
  • clarify the options that are on offer to the patient and the consequences, both good and bad, of the options
  • support the patient who feels too timid to ask questions or challenge the clinician, namely act as the patient's advocate as well as interpreter

Many more patients would like an interpreter present in the consultation than there are interpreters available. To fill the gap, the Department of Health set up NHS Direct, but there are many other services of interpretation provided by voluntary organisations. There are now hundreds of help lines covering both common long-term medical conditions such as rheumatoid arthritis, and rare conditions, such as the service provided by Contact a Family, a charity which provides support and advice for parents who have children with disabling diseases, some of which are so rare that even the paediatrician they are seeing may see a case no more than once a decade.

Even if the first language of the patient and the clinician is the same, interpretation may be necessary. A study of the language used in consultations showed that, to paraphrase Winston Churchill's famous dictum, the Britons and Americans were two nations divided by a common language. The fact that clinician and patient both use English does not mean that each understands the other. (22) Furthermore, the words used act not only as tools to aid diagnosis or clarify options but also as tools of social control, maintaining the power of the doctor over the patient. Often the clinicians used words with the intention of reassuring the patient and reducing their anxiety, but the use of comforting words such as 'it's just a little lesion' not only fail to comfort every patient but also maintain the paternalistic relationship with the clinician as parent and the patient as child. In the 21st century, both clinicians and patients have to view each other as adults.