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Sharing information and confidentiality - being sensitive to patient and carer wishes

 

 

“Nam et ipsa scientia potestas est” (“Knowledge itself is power”)
Francis Bacon 1561 - 1626

 

  • Good communication and information sharing is an important part of a professional’s role. You should always aim to use clear, straightforward language, be concise and accurate. Take care that you differentiate between facts, opinions and judgements.

  • All patients with Parkinson’s disease (PD) have a right to be fully informed about all aspects of their medical condition. They also have a right to choose not to be informed if that is their wish.

  • When people with PD have a good understanding of their condition, they are better able to manage their own health and treatment and have a better quality of life. The well informed patient has better psychological outcomes, with less anxiety and depression. They also make less demand on professional time and have fewer hospital admissions.

  • Family members and carers also benefit from a full understanding of the nature and management of the condition of the person they are looking after. However, information about diagnosis and treatment belongs to the person with PD. It is only with their consent that this confidentiality can be broken.


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  • Sometimes people with PD may be reluctant to share information with family members, because they feel it is private and not necessary for others to know,  because they are afraid it may lead to others taking over and loss of their independence, or because they want to protect those close to them from worry and distress.

  • Sometimes family members and carers ask doctors not to explain the diagnosis (and especially prognosis) of PD with patients. They argue that they know the person best and that knowledge of the true nature of the condition, the lack of a cure and inevitable progression will be too upsetting and provoke avoidable anxiety and depression.

  • §In practice, most patients wish to be told their diagnosis and to be kept fully informed. Certainly they have a legal and moral right to know, if this is their wish. Disclosure of the diagnosis of PD typically relieves uncertainty and anxiety over symptoms, justifies subsequent treatment and allows plans to be made for the future.

  • It is nearly always best to be honest to the person with PD and to encourage them to be open with family members and carers. This will ensure that relatives and friends do not become alienated and can provide informed and appropriate care and support.
 
FURTHER INFORMATION

Useful websites include:

Breaking Bad News : educational website for professionals

Expert Patient Programme
 

This site has been established for the dissemination of information. While every effort is made to ensure that information on this site is accurate and current we accept no liability for any omissions or inaccuracies that may have crept in. If in any doubt please contact your doctor for further advice.

Last Modified 13 August 2004
Maintained by Matthew Harris