Funder by the Department of Human Services Auspiced by Our Community

PRIVACY, SECRECY AND CONFIDENTIALITY

Issues of privacy, secrecy and confidentiality are often uppermost in our minds after we are diagnosed with 'mental illness'.

There are differences between these three concepts as we generally understand them. Our commonsense understanding suggests that:

Even amongst ourselves, consumers have widely differing ideas about these three concepts. What is experienced by one person as 'necessary privacy' may be for another 'dangerous secrecy'. Personalities and our past histories influence our views.


The family context

One of the contexts in which these competing ideas can be most problematic is in the relationship between us and our families. Sometimes our families try to 'shut us up'. They seem to be convinced that even though we seem to freely talk about our experiences of 'mental illness' we don't really want to disclose so much to the world. Behind them stands a mountain of 'evidence' that we might not be very good decision makers about such things, especially when we are 'unwell'. This can cause conflict.

There is an element of truth on both sides. At times families are understandably embarrassed. This is the nature of cultural censure. Instead of facing this embarrassment and coming to terms with the social pressures that are driving their feelings, they sometimes blame us, especially when we refuse to be silent. As people diagnosed with 'mental illness', we can be sitting ducks for this sort of displacement behaviour.

On the other hand, some of our experiences of mental distress leave us prone to over-analysis which, when verbalised to others, can be experienced as both too divulging and also boring.


Expectations

There are also problems in relation to what we sometimes believe we are expected to divulge to those with whom we have an ongoing therapeutic relationship. This is largely to do with differences in power between us and our psychiatrists, psychologists, nurses, counsellors or other clinicians.

As clinical psychologist and consumer Patricia Deegan puts so well, "A meeting with a psychiatrist need not be a confession!"


Confidential(ish)

There are ethical and professional responsibilities of clinicians in relation to privacy and confidentiality.

Medical professionals are required by the standards of their professional organisations, their registration bodies and their employing organisations to respect the confidentiality and privacy of the people they treat. Most medical professionals practicing in the field of psychiatry believe they do this. They would be dismayed that many of us are so critical of their practice in relation to confidentiality.

Our criticism tends to hinge on the fact that they do not treat other medically trained people the same way as they treat lay people in relation to confidentiality. That is, information that is not necessarily relevant is routinely passed from one doctor to the next, from one nurse in casualty to another nurse in the hospital - and to other clinicians who do not need to know.

We believe that this is bad practice. 'Mental illness' is not like other illnesses. It is maligned and misunderstood - even by many medical people. The starting assumption should always be that the only people who should be privy to information about us are those who need to know for the 'treatment' to be carried out in the best way possible.

It is imperative that everyone being treated for 'mental illness' - especially in an inpatient situation -knows that when a staff member says, "this is confidential" they mean, "confidential to the team". That is, the information can be passed to other people who are deemed to be part of 'your' treatment 'team'.

Many inpatients are unaware of this and believe that when they reveal really private and important things - even disclosure of childhood abuse - these revelations will go no further than the person they have learnt to trust and to whom they have actually spoken. The reality is that this person is in no position to promise this sort of confidentiality. They are required as part of their responsibility as a 'treating team' member to not only pass on this information verbally but also to document it in the patient's file.

Often, there is no transparency around this expectation. Ideally, clinicians should tell us all of this when we are first admitted to the ward or unit in order to allow us to make an informed decision about what we will divulge and to whom. However, this is rarely done.


The cloak of 'confidentiality'

Often it feels like everyone seems know what is going on (about us) except us. No one tells us anything.

At the same time, those we want clinicians to talk to are shut out under a cloak of 'confidentiality'. We believe this is lazy communication. Confidentiality should not be used as an excuse for poor communication. It is our lives. We should be able to ask clinicians to speak to whoever is important to us. This will not always be the people whom the service recognises as 'next of kin' or 'carer' - it could be a lover, a priest, or simply a close and trusted friend.

Many of us now use an Advance Directive to allow us to indicate, as officially as possible, to whom we want clinicians to talk, and what we want to be kept private.


Legal protection

In Victoria our privacy is, on paper, protected by both state and federal legislation. The pertinent Acts are:

See the Community Law Handbook's arguments about the difference between confidentiality and privacy and how this might affect any actions we might consider taking - both legal and non-legal.