the diagnosis of Parkinson’s disease to the patient and family
information that you give has to be sensitive to the needs of that person at that
stage of the disease process"
people that they have a chronic, disabling and progressive condition, such
as Parkinson’s disease (PD), is not easy.
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.
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.
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.
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.
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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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.
the negative news (lack of a cure, likely increasing disability and
handicap) with the positive (effective drug treatment, likely slow
time and space for the information to be absorbed and for people to ask
in the patient’s notes what was said and the patient and family’s
reaction to it.
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.
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.
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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