Between a rock and a hard place: exploring the conflict between respecting the privacy of patients and informing their carers

Background: A patient's right to privacy is considered fundamental to medical care, with physicians assuming the role of guardian of the clinical information which is conveyed to the patient. However, as a patient's health declines, physicians are often challenged by the need to protect patient privacy while addressing the expectations of the patient's carers, who seek medical information to provide appropriate care at home.

Aims: This study sought to explore the expectations of patients, their carers and physicians regarding the communication of clinical information to carers.

Methods: Surveys were distributed in outpatient clinics at a metropolitan quaternary hospital, with responses from 102 patients and carers, as well as 219 medical staff.

Results: The expectations of patients and carers differed from those of medical staff. Physicians typically believed discussions with carers should begin following the patient's permission and at the patient's request. Patients and carers, however, believed information should be automatically offered or provided when questioned. Further, carers generally felt information updates should occur regularly and routinely, whereas physicians indicated updates should occur with prompting either by a major clinical change or in response to a carer's concern.

Conclusion: Physicians should be aware that the expectations of patients and carers regarding information communication to carers may not match their own. Meanwhile, patients and carers should be made aware of the constraints upon physicians and should be encouraged to convey their preferences for information sharing. These tasks could be facilitated by the development of a prompt sheet to assist the clinical encounter.