- S L Turner,
- E J Maher
- Mount Vernon Centre for Cancer Treatment, Mount Vernon and Watford Hospitals NHS Trust, Northwood, Middlesex HA6 2RN.
EDITOR, - We support L J Fallowfield and colleagues' conclusions that patients' “desire for autonomy may be less strong than the need for clear and accurate information” and that patients “have the right to decline the opportunity to participate in decision making.”1 In a study of 165 patients treated for Hodgkin's disease within protocols of the British national lymphoma investigation, with a median interval from diagnosis of eight years, we examined patients' participation in decision making and the provision of information and choice. Of special interest was the impact on patients' views of the success or otherwise of treatment. Successful treatment was defined as complete response with no relapse, while unsuccessful treatment was defined as a failure of initial treatment to result in complete response or a relapse requiring further treatment.
Patients' answers to self administered questionnaires indicated that, although 102 patients thought that all decisions about treatment had been made entirely by their doctor, almost half of these were satisfied with this while the other half were not. A perception of participation in the decision making process did not necessarily mean that patients thought that they had been given choices with respect to treatment: 41 of the 53 who said that they had participated in decision making perceived that no real choices had been available. Satisfaction with the information given to patients at and around the time of diagnosis was significantly linked to satisfaction with the perceived level of participation in the overall decision making process (table). The success or otherwise of treatment had less influence than expected on the relation between satisfaction with the information given and satisfaction with the degree of participation in decisions (sums of squares test), although numbers are small.
|Satisfied with participation in decision making|
|Satisfied with information||Success||Failure||Total||Success||Failure||Total|
*Excludes 17 patients who could not remember or did not answer. (dagger)P<0.001 (X2 test).
These data, like those reported by Fallowfield and colleagues, imply that patients' overall experience of decision making is more positive if they view the provision of information as adequate but not that their involvement in choices concerning treatment is necessarily desired. Many people may actively seek to relinquish the decision making role to the doctor and should be allowed to do so. Moreover, the outcome of a particular choice of treatment may not have any bearing on patients' satisfaction with information or their level of participation.
Many patients seem not to distinguish clearly between participation, information, and choice. Further research into understanding the complex relation between patients' desire for information, their need to participate, and choice in medical decision making should be a priority.