Carers (and others) and Confidentiality

"to unmask falsehood and bring the truth into light" ... Shakespeare : the Rape of Lucrece







M ental

I llness

C oncerns

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What to do when it becomes apparent that the patient cannot, will not, or does not - because of the illness condition likely to be found present - give a proper history.
In physical illness the patient wants to give all the necessary information.

In mental illness that is not the case.

In schizophrenia patients cannot remember previous illness behaviour, may tell what seem to be lies but which is just a way of answering to meet expectation.
Patients with affective illness present their account coloured by the state of their abnormal affect.
Patients with anorexia or bulimia downplay any difficulties.
Obsessional disorders also diminish the effect their behaviour has on their lives and that of others.
Personality disorders deny and embroider.

The doctor /patient relationship in mental illness IS NOT that of the co-operative patient giving full disclosure.

What to do when the patient asks that others be not approached about them?


Answered succinctly in a letter from a concerned observer in one deteriorating scene involving a neglecting ill person in response to an article about the caring in community especially from family. ( British Journal of Psychiatry letter 1998 )...

Family involvement in the care of people with psychoses.

Sir ,

Should communication between psychiatrists and non-professionals be permitted without the patients agreement ?

Szmukler & Bloch (1) have confirmed my impression that the profession is at sea over the question . [ ed and still is ]

Community care of people with psychosis demands fundamental changes in our attitude to medical ethics as they apply to the rights and liberties of such people. Ethical questions cannot be resolved by laying down rigid rules . Whenever there is doubt about the patient's frankness or ability to communicate then surely it is incumbent upon the clinician to seek extra information from family or other informants, even without the patients permission .

The duty of 'care towards carer' ( proclaimed in the article) cannot be considered as a separate issue. The interests of the patient and carer are closely linked .
...only the carers, who knows them well, and sees them frequently know the full extent of the day to day inadequacies.
The professional visitor may see nothing of the effort being put in by carers, who are themselves highly stressed , either singly or collectively.
If one or more should crack, disaster may ensue before the professional has any inkling as to what is going on .
So, it is not only a duty of' care towards carer' that is involved.

To neglect communication with them is to neglect the duty of care to the patient as well, and should be regarded as serious negligence .
The profession should recognise that there should be no rigid requirement to get the patients consent for such communication. If it does not, then there will be more disaster of the kind that has already disturbed public confidence in psychiatry , and many less dramatic disasters in which the lives of patients and carers are undermined unnecessarily

Ingram .
Letter March 98 1997 correspondence in response to a leading article on carers in B.J.Psychiatry [ (*)Szmukler&Bloch 1997171401-405 .]

The Royal College of Psychiatry referring to the White Paper [ 5.33 ] heralding a new Mental Health Bill - rather inelegantly addresses the enveloping mantra of confidentiality beneath which the psychiatrist work is hidden.

.. ..." Confidentiality is the cornerstone of the doctor/patient relationship.

Unless patients are assured that what they say is confidential, except with their consent or in the most extreme circumstancesof public interest, they will avoid giving information which they believe may incriminate them, yet which is essential if the patent is to be given appropriate and necessary treatment.
This is likely to reduce rather than increase risk.
An example is the Government's proper concern that drug addicts should be encouraged to seek treatment.Their drug taking is illegal.They are unlikely to seek help if information about their activities is to be given to criminal justice agencies..... "

This defensive line of argument disregards the common experience that people with schizphrenia cannot recall what has happened in between. Often they deny what has been seen by others who could fill in the gaps with what is needed by a point interviewer. People with schizophrenia do not - cannot, the illness condition prevents it - recount what has happened so that they seem to lie and deny what has been observed by witnesses, often then accusing the family witness of deliberately painting a bad picture to let the patient down.

So how can a psychiatrist have a proper basis on which to judge the best interests of the patient before them - unless thay have access to some observer of in-between behaviour - a witness, who must be able to put that information before the professional somehow - without undermining the informer's relationship with the patient - so as to be able to continue to observe and report in the future.

The College defends confidentiality by saying this will bring better disclosure in the future - as though the withholding of information is deliberate and is down to lack of trust - but with schizophrenia that is not the case - withholding is not deliberate - it is part of the disconnection which defines the active illness. And how to know that information is withheld unless there is comparison with information from others ?

Working psychiatrists are beginning to speak out against the defensive advice freom their Royal College.

What serves the patient best

"When my son comes out of hospital," Mary says, "the professionals forget about him. But he is my son for life."

Dr.Launer is impatient with the legal arguments.
He says: "If, as a psychiatrist, you are worried about your professional status, would you rather answer to a coroner or to the General Medical Council for the fact that you did not act and your patient killed himself, or would you rather risk being accused of breaking confidentiality? I know which I'd choose."<P>Some psychiatrists state they cannot keep families in the loop because the family may be part of the cause of the mental illness.
Launer is unimpressed by that argument "Most carers are ordinary, distressed people who want the best for their relative," he says They may inadvertently behave in a way that is unhelpful, but in that case it is all the more important to include and inform them.

The carer is part of the clinical team, Launer says. If the patient objects, then you need to find out why. "Often, the objection is illness-based ('they're trying to kill me* or 'she hates me'), rather than reality-based," he says. "I would talk to them about their concerns, explain why it would be useful for their carer to be involved, and agree what information should be shared and what will be kept private."

Says Rethink's research and policy manager, Vanessa Pinfold. ..... Not only are main caring relatives expected to cope with less information than any professional carer would require, but also psychiatrists are missing out on the carer's in-depth understanding of the patient.

... " there is no single solution. It all comes down to judgment and individuals. It is difficult, and is made more so by the very poor continuity of care in psychiatry, and by psychiatrists' fear of being sued if they break 'confidentiality'. They find it easier and safer to say nothing. The culture needs to change."

Rethink is involved in a Department of Health-funded project, Positive and Inclusive Effective Ways for Professionals.

The general lack of understanding - that information at point interview from a patient with schizophrenia cannot be relied upon - 'they were not sectionable as I saw them' - 'they seemed capable enough when I interviewed them' -- is no absolution' if the door was not open to receive information from others - as many family 'victims' of homicide attest.

The psychiatrist - the clinical supervisor ... the responsible medical officer - cannot be authoritative nor lead clinically unless and until they have asked for and acquired all the hinterland 'in between' information - which they will not get if they are shut off from the witness of in-between behaviour and they have to rely and decide on what is said in the 'therapeutic' interview.

In the home - at the out-patients - in the police station cell.

If it is at all likely that the patient has an illness where insight and capacity is lost or likely to be variably present then point examinations and interviews cannot be expected to reveal all the information relevant to a therapeutic decision.

Yet to ask for permission to approach other people who are in the observing loop may well end any prospect that the patient will confide or reveal difficult thoughts in the future but will hide illness from the observer - upon which observation and information the therapist or the community witness contact will rely - to anticipate real risk situations. And may lead to the potential witness being seen as a spy or 'informer' thus becoming a victim of retaliation.

What to do ?

The working answer comes from the Local Authority Social worker seconded to the community mental health team who is expected routinely - as part of what is the routine of the team - the way a team works properly - to obtain a family history at first illness and to maintain family contact thereafter - keeping open the route in for the carer comments about in-between behaviour. The mental health community nurse identifies with the 'user'patient and reports in. The psychiatrist - at the weekly team working meeting hears from both and the team is there to respond appropriately.
And to respond without revealing the source of the information or using it in a way which singles out a particular observer who has given the information.

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