Sharing information with carers: the dilemma

A middle aged man thinking

The carer’s need for information must be balanced against the service user’s right to privacy.

The carer’s need for information must be balanced against the service user’s right to privacy. This need by carers relates to information that will protect their own health and wellbeing, and support them to provide effective and appropriate support. For service users, the right to decide with whom information is shared is of paramount importance. It is linked to self-esteem, privacy, personal choice, independence, autonomy, general well-being and empowerment.(1)

Achieving this balance will involve weighing up the ethical dilemma of non-malificance (not doing harm through failing to disclose) and beneficience (doing good, by respecting patient confidentiality – if consent has not been obtained).

Confidentiality is seen as a particularly difficult ethical issue when the family’s involvement appears justified but the service user is withholding consent.(2)

Communication with colleagues, the service user and family/friend carer is central to resolving these issues.  All should be aware of the potential consequences of disclosure or non-disclosure. Service users need to be made aware that rights to confidentiality are not absolute, and may be breached in cases of societal and public interest (as shown in case law). They may need to be helped to understand why their carer might benefit from limited information sharing.Carers report that supportive explanations of why information cannot be shared are preferable to the bland ‘patient confidentiality’ retort, which they may see as a convenient excuse not to engage.

Further Reading

  1. Slade M, Pinfold V, Rapaport J, Bellringer S, Bannerjee S, Kuipers E, et al. Best practice when service users do not consent to sharing information with carers. British Journal of Psychiatry. 2007; 190148-155.
  2. Szmukler,G, Bloch S. Family involvement in the care of people with psychoses: an ethical argument. British Journal of Psychiatry. 1997; 171401-405.