information and confidentiality - being sensitive to patient and carer
“Nam et ipsa scientia
potestas est” (“Knowledge itself is power”)
Francis Bacon 1561 - 1626
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.
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.
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.
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
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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
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.
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.
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.
Useful websites include:
Breaking Bad News : educational website for
Expert Patient Programme