Q J Med 2002; 95: 411
© 2002 Association of Physicians
Correspondence |
Delivery of information during and beyond the medical consultation
Department of Oncology, University Hospitals of Leicester, Leicester, ras20{at}le.ac.uk
Sir,
In congratulating Ami Schattner on an insightful editorial that pinpoints many of the weaknesses of our current knowledge base about patients' desire for information,1 we would like to make two points.
Firstly, there currently exist large gaps between policy-makers, published research and the practical realities of the out-patient clinic. The NHS Information Authority has identified a general need for patient-centred information that should be objectively appraised.2 In practice, those of us who have to tell patients and relatives about cancer on a daily basis have to apply discretion and individual consideration. In such a subjective art, involving the interpretation of subtle visual cues at the same time as listening to what a patient and their relatives are saying or not saying, there is always scope for improvement. Although there may be dispute regarding the exact percentage, there is no doubt that a minority of patients do not want to know details regarding their diagnosis and treatment.
Indeed, even within the west of Scotland study (which is slightly misquoted by Dr Schattner, since some of the patients had not been told their diagnosis and those that had, would have received differing verbal accounts, depending on the style of the consultant involved), there were discrepancies regarding the proportions of patients that did not want to know certain facts, e.g. 15% of patients said that they did not want any information regarding their diagnosis, yet 96% wanted to know if they had cancer.3 It is difficult to quantify exactly how much a patient does not want to know. Dr Schattner's suggestion that this preference should be ascertained before the patient becomes ill is not really analogous to a ‘do not resuscitate’ order, since the diagnosis of terminal cancer usually allows time to experience a broad range of emotions with regard to dying, during which time predetermined decisions should not be any more valid than the patient's feelings at the time.
Secondly, the burden of providing patients with as much or as little verbal and written information as they want should not be placed on the shoulders of a single clinician on a single occasion. It is the responsibility of members of the medical team, who must develop a continuing relationship with a patient. This approach is particularly pertinent to treatment decisions. In a recent questionnaire study of patients attending a chemotherapy clinic, we found significant differences in responses between patients receiving clinical trial chemotherapy compared to those receiving standard chemotherapy. Patients in clinical trials were significantly more likely to remember receiving written information from a hospital nurse, and were more willing to approach a nurse with questions about diagnosis or treatment.4 Levels of satisfaction were high. This finding shows the importance of the continuing relationship between the patient and individual members of the team caring for them, tailoring the provision of information to patients' wishes as they change.
References
1.
Schattner A. What do patients really want to know? Q J Med2002; 95:135–6.
2. NHS Executive. Cancer Information Strategy. London, NHSE, 2000.
3.
Meredith C, Symonds P, Webster L, et al. Information needs of cancer patients in west Scotland: cross sectional survey of patients’ views. Br Med J1996; 313:724–6.
4. Sharma RA, Symonds RP, O'Byrne KJ, et al. Involving patients in treatment decisions: can we learn from clinical trials? Clin Oncol2001; 13:328–32.
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