How often have you heard these words? ‘Sorry nurse, but can you tell me about my father? What's the plan? What's the diagnosis? No one is telling us anything.’ What do you do? Is telling a family member breaching patient confidentiality or is it a key element of patient care? Should you simply say: ‘I will call the doctor…’ knowing full well that the on-call team don't know the patient and are highly unlikely to be able to come and see the patient's relative, thereby resulting in more family frustration? It is a real conundrum and happens on a daily basis.
When pondering this question, it is worth remembering that navigating patient care is increasingly complicated, particularly with an ageing population. Caring for a frail elderly relative places pressure on family members, many of whom will be elderly themselves. Therefore, effective communication is essential for safe discharge planning, especially as communication failures are commonly at the centre of failed discharges, often with tragic consequences (Mellor, 2016).
The Nursing and Midwifery Council (NMC) Code (2018) provides advice on confidentiality. First, it states that all patients have the absolute right to have information about them treated with privacy and respect. Therefore, before sharing information with family members, the patient should give their consent. It is advisable that this consent is recorded in the nursing notes. Should a patient with capacity not consent to their information being shared, even with family members, then this request must be, in the first instance, upheld. However, this can place the nurse in an extremely challenging position and can result in conflict with family members.
Although the family will be understandably anxious about the patient's condition and diagnosis, it is important that information about the patient is first shared with the patient. The refusal to give out a formal diagnosis can be a challenging area to navigate, and it must be conducted with compassion and understanding. However, by remembering that the diagnosis ‘belongs to the patient and not the relatives’ you can avoid the all-too-feasible situation where family members request that a diagnosis is withheld from the patient.
Nevertheless, increasingly, severe illness, frailty or dementia mean patients lack the capacity to understand what is being requested of them, when it comes to sharing information. The Code provides some guidance on this matter by stating ‘share with people, their families and their carers, as far as the law allows, the information they want or need to know about their health, care and ongoing treatment sensitively and in a way they can understand’ (NMC, 2018: 5.5). So what does ‘the law allow’? The concept of ‘in the patient's best interests’ is the guiding principle. The Department of Health (2003) provided guidance.
My first ward sister set clear guidelines for her staff on this matter, which I continue to rely on today.
First, ask the patient to nominate a family member or friend with whom information can be shared. The nurse should support the patient to make this decision as the obvious choice of the husband or wife may not be appropriate, particularly if they live alone and are themselves elderly. Sadly, these simple key nursing roles may be overlooked during a hurried admission process, resulting in frantic decision-making about who, when and how to contact a family member should an emergency occur.
It is then important to agree with the nominated family member/friend that they are the primary conduit for the sharing of all information, and that other family members should contact them for information. If done effectively this approach can improve communication by minimising ‘Chinese whispers’ as families try to piece together different sources of information, often resulting in confusion. This also minimises multiple phone calls to the ward and requests for information from family and friends.
Having recently been in this position myself, following the admission of a loved one, my family found that, by using social media, communication was readily maintained. This allowed one family member to be the primary contact, empowered through the consent of the patient to link in with ward staff.
The concept of confidentiality can result in a minefield for the inexperienced nurse, resulting in the all-too-common and generally unhelpful nursing statement of:‘He's doing as well as can be expected …’ This can be avoided by at least agreeing a policy at ward level while developing a hospital-wide policy on how to share information with relevant parties.