Final Report > Chapter 23: Respect and Honesty > Respect

Respect

3 Perhaps one of the most important features of a patient's experience when going into hospital is a sense of powerlessness and loss of control over personal decisions. Of course, patients are usually ill, and more than content to let others take care of them. But this should not be read as implying a readiness to have all decisions made for them, nor a willingness to be kept in partial or complete ignorance of what is going on. Good practice now demands better communication with the patient, and seeks to involve the patient, wherever possible, in decisions about treatment. Yet we were told, by a wide cross-section of patient groups during Phase Two, that there is still an image of patients as passive recipients for whom rather than by whom decisions are made. As one patients' group put it:

`Medical practice is essentially an intellectual pursuit. Being ill is a highly emotional experience. ... patients are deemed incapable of deciding what is in their medical interests. They become clinical material to which things are done.' [1]

4 The imbalance of power between professional and patient arises for a variety of reasons. For example, patients generally have less knowledge about the healthcare system, its organisation and institutions than those who work within it. They possess a justifiable need to believe in the competence of the professionals caring for them. They may perceive themselves to be different in status from the professional, in terms of expert knowledge, class, gender or ethnicity. Structural factors can also inhibit patients' confidence: physical circumstances such as the patient being confined to a bed; or an awareness of the constrained amount of time for consultations whether on the ward, or visiting an outpatient clinic. We have no doubt that this sense of vulnerability is perhaps even more acute in the case of the parents of an unwell child. This feeling was expressed by a group which includes Bristol parents, as follows:

`The majority of parents who enter the NHS with a child who has a life threatening condition enter a world which is unfamiliar. A world of high tech machinery, a place where clinicians are making serious decisions which affect life and death outcomes. ... The effect of being in such an alien environment can leave a parent feeling disempowered, scared, vulnerable and anxious.' [2]

5 If a sense of powerlessness is a common experience, and engenders feelings of frustration or worse, ways must be found to empower the patient, and, in the case of unwell children, their parents. We emphasise that we are not concerned to empower patients at the expense of healthcare professionals. The aim should be to foster an environment in which both patients and professionals feel that they are playing a mutually supportive role in the patient's care.