Monday 19 March 2018

Mind and meaning: Doctor-patient Confidentiality

Health Minister Leo Varadkar. Photo: Damien Eagers
Health Minister Leo Varadkar. Photo: Damien Eagers

Patricia Casey

On the Sunday before last week's election a young woman spoke on the Week in Politics on RTE 1. There was sadness and frustration in her voice as she recounted that her brother had died by suicide six weeks ago. She explained that her family had wrestled with the mental health services to obtain information about his illness because of the barrier posed by confidentiality.

Leo Varadkar, the Minister for Health, explained that confidentiality was a complex issue because it is so central to the doctor-patient relationship and that if permission is not given to discuss his illness with family members then this cannot be disregarded.

All of this is true. But confidentiality is not absolute and family members also require certain information, particularly if the person is dependent on them for care. The task is to respect confidentiality while meeting the needs of carers.

The starting point is that permission to provide information to family members about the illness is required. Provided the person is well enough to give informed consent, then a refusal must be respected.

But even this is a simplification as the refusal may stem from a fear that personal information about their feelings, thoughts, behaviour and beliefs will be given.

If reassurance that this type of intimate information is out of bounds and will not be shared, it is my experience that most of our patients will allow us meet with and discuss treatment issues with their family. This involves a dialogue with the patient whereby what may and may not be discussed is made explicit and is respected by the doctor.

The kind of information most families request is little different from that required when a medical illness is diagnosed.

Firstly they want to know the diagnosis and if it is treatable. They want to know what the ultimate prognosis is and what the aftercare will be. How frequently will the person have to attend the out-patient clinic, will they be on medication and/or seeing a therapist? They will inquire if the person can return to work or college and when. Are there any lifestyle precautions that should be observed?

Relatives also want to know who they can turn to in an emergency situation.

Invariably most patients have no objection to all of this information being shared with those closest to them but I have, on occasion, had to negotiate which of these questions I can address for the peace of mind of their family.

I have rarely been forbidden from at least providing some information unless the family is dysfunctional or abusive.

On occasion a doctor can ethically breach the code of confidentiality against the wishes of the patient if they pose a danger to themselves or others. This is especially pertinent when there is a risk of suicide.

Likewise, if a person is in danger of relapsing into a serious illness, for instance if medication has been discontinued against medical advice, the gravity of a potential recurrence of symptoms might justify informing the next of kin.

If the life of somebody else is at risk, that person or a policeman should be informed.

Situations arise in the emergency departments of our hospitals when people attend because of suicidal thoughts or behaviours, because they are emotionally overwhelmed or because of terrifying psychotic experiences such as hallucinations or delusions. Many are homeless and have nobody from whom we can obtain collateral information.

Those who have, sometimes refuse permission, but because a life might be at stake this can be over-ridden. This is a judgement call that has to be made, taking into consideration the possibility that the person might consciously minimise their risk if information from other sources is not obtained.

Families feel frustrated that there is a wall between them and the mental health team. This should not be, and even if the patient absolutely forbids a doctor from disclosing information, there is no reason not to listen to what the family have to say.

In my experience families understand this when it is explained. Family members know the person best of all and what they tell us can sometimes throw a different light on the diagnosis and on how we manage the illness.

On the other hand, families can be over-involved in their loved one's treatment and this may be difficult for them to appreciate. For example, sometimes they do not accept the diagnosis or they discourage the person from accepting the treatment that is recommended and this is as likely with talking therapies as with medication. The information they request is occasionally just too intrusive.

The basic principle is to do no harm, and the assumption that confidentiality prevents us speaking to family members or listening to their concerns is misguided and dangerous.

A nuanced understanding of confidentiality ensures that the trust it enshrines in the doctor-patient relationship is respected, while also engaging actively and meaningfully with family members.

These views are published in the online issue of the Irish Journal of Psychological Medicine ("Beneficence and non-maleficence: carers and confidentiality") and will be published in the paper issue in the near future.

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