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Telling the diagnosis of Parkinson’s disease to the patient and family

 

 

“The information that you give has to be sensitive to the needs of that person at that stage of the disease process"
 

 

  • §Telling people that they have a chronic, disabling and progressive condition, such as Parkinson’s disease (PD), is not easy.

  • §The lack of a definitive diagnostic test when symptoms first present introduces an element of uncertainty. This makes the timing of telling the diagnosis of PD more difficult. Discussion of the possible cause of problems, their likely course and potential management is best initiated early rather than late.

  • §Before breaking the news, it is important to ensure privacy and freedom from interruptions and adequate time. All the relevant medical information should be to hand.

  • §Whenever possible, it is best for both the person with PD and involved relatives (the likely future carers) to be given information together. If appropriate, the consent of the patient to this should be obtained.

  • §Initially it is useful to establish what the person with PD knows or suspects. Focus on telling what is most relevant - diagnosis, prognosis, treatment options and available support.
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  • §Do not give more information at one time than can be absorbed - be led by the patient on what are the most important areas to be covered at the time.


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  • §Information should be given at the patient’s pace, checking for understanding as you go along and being sensitive to emotional reactions. Be honest and explain medical terms as you go along.

  • §Mellow the negative news (lack of a cure, likely increasing disability and handicap) with the positive (effective drug treatment, likely slow progression).

  • §Allow time and space for the information to be absorbed and for people to ask immediate questions.

  • §Document in the patient’s notes what was said and the patient and family’s reaction to it.

  • §Provide a contact person and telephone number so that they can get in touch if uncertain or in need of support in the next few days.

  • §Arrange follow up. Often a telephone call in a few day’s time, or a home visit by a Parkinson’s Disease Nurse Specialist when available, will be appreciated before the next formal contact.
FURTHER INFORMATION

Useful books are:

‘When the News is Bad’, by Anne Faulkner. Published by Stanley Thornes (Publishers) Limited in 1998.

Useful websites are:

Breaking Bad News


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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