Final Report > Chapter 23: Respect and Honesty > Partnership: involving patients and parents in decision-making > Information

Information

16 The exchange and provision of information is at the core of an open and honest relationship between healthcare professionals and patients. It is also an inextricable part of the caring for the patient. As the Royal College of Surgeons told us:

`The better informed and more involved a patient is, the more likely it is that they will: be better able to weigh up the pros and cons of treatment and make decisions about their care; be better prepared for what to expect of surgery; adhere to treatment regimes; be satisfied with their care - which has a positive impact on the outcome of treatment; be less likely to complain or sue should a complication occur.' [15]

17 One of the principal ways of empowering the patient is to ensure that they have the necessary information to allow them to understand and participate in their care to the extent desired. The ability to assess patients' needs for information requires the ability to listen, combined with a willingness to avoid second-guessing what they will want to hear, or be able to understand.

18 In the light of the contributions to our seminar on empowering patients, we identify four fundamental principles which should in future underpin any policy aimed at meeting patients' needs for information. First, trust can only be sustained by openness. Secondly, openness means that information be given freely, honestly and regularly. Thirdly, it is of fundamental importance to be honest about the twin concerns of risk and uncertainty. Lastly, informing patients and in the case of young children their parents must be regarded as a process and not a one-off event.

19 Translated into practical action, we believe that these principles should influence both the form and the content of information, and the process by which it is communicated:

• information should be given in a variety of forms (written, oral, audio-visual), it should be given in stages and be reinforced over time;
• information should be tailored to the needs, circumstances and wishes of the individual;
• information should be based on the current available evidence, and include a summary of the evidence and data, in a form comprehensible to patients and their carers;
• various modes of conveying information, whether leaflets, tapes, videos or CDs, should be regularly updated and developed and piloted with the help of patients and carers;
• patients and, where appropriate, carers, should always be given the opportunity and time to ask questions about what they are told, to seek clarification, and to ask for more information;
• patients and, where appropriate, carers, should also be given the sense of freedom to indicate when they do not want any (or more) information: this requires skill and understanding from healthcare professionals;
• before embarking on any procedure, patients and, where appropriate, carers, should be given an explanation of what is going to happen and, after the procedure, should have the opportunity to review what has happened;
• patients and carers should be supported in dealing with the additional anxiety sometimes created by greater knowledge; and
• patients should be told that they may have another person of their choosing present when receiving information about a diagnosis or a procedure. [16]

20 These principles and practical proposals are deliberately more comprehensive than is usual. They go further than most current guidance. By being more comprehensive, they serve to provide a protocol on which partnerships can be built and patients can know what to expect, rather than having to rely on the discretion of the professional to part with information. We note that the need for change in this direction is recognised. For example, the new edition of the GMC's code for doctors, `Good Medical Practice', gives a higher priority than was previously the case to the importance of good communication between patients and doctors. [17]

21 What these principles make clear is that the issue is no longer whether to inform a patient, but how to do so effectively. There is a voluminous literature on the mechanics, as well as the principle, of informing patients. It has been argued that, because it is unclear what patients may wish to know or impossible fully to inform them (i.e. to the level of the professional), it is unwarranted, if not cruel, to impose information on them. We are not persuaded. We believe that healthcare professionals have a duty to empower patients: providing information is one means of such empowerment. We accept that each patient is different and may wish for varying amounts of information at various times, with the constant ability to say `enough'. But this fact does not serve as a reason for not setting off on the information journey. Rather, it indicates how carefully the journey must be travelled and that healthcare professionals need good, all-round communications skills, if the patient's needs are to be respected and met.

22 In the particular case of children, their needs for information should also be assessed by listening to them and being led by their questions. Children will ask about what they want to know and must be answered truthfully and clearly. For those healthcare professionals who are inexperienced or lack confidence in talking to children, there are a number of people within the healthcare team who can advise and guide, for example, play specialists, social workers, psychologists and teachers. A reluctance by any professional to consult team members, for whatever reason, is counterproductive, as an holistic approach to the needs of the child within the family, combined with a multidisciplinary, multi-professional approach, is likely to be most effective. [18]

Footnotes

[15] Seminar 7. The Royal College of Surgeons of England. Position Paper

[16] See Report of Seminar 7, Annex B. See also the article by Coulter et al. referred to in footnote 19 of this chapter

[17] General Medical Council. `Good Medical Practice', July 1998. www.gmc-uk.org

[18] We note the call for further research in Dixon-Woods M. et al. `Partnerships with Children', `BMJ' 18 September 1999; 319: 778-780. www.bmj.com