Should the personal taxation arrangements of the Chancellor of the Exchequer be public knowledge? Would you feel entitled to try to find out the age of a celebrity film star even if they wanted it kept secret? Our answers to such questions, none of which is unambiguously correct, show how mixed attitudes are to personal information about individuals in different situations, writes Jef Smith.
It might be thought that the rights of health and social care users present no such dilemmas, but the reasons for breaches of trust over personal information go well beyond mere prurience. The affairs of a person receiving care at home may provoke little interest among the general public, but seen from the perspective of the person themselves, confidentiality remains central to dignity. This applies whether the risk of disclosure relates to finances, sexual or personal habits or health, or even date of birth.
Threats to the privacy of data relating to a person being given personal support in their own home arises arise not from the external value of leaked information but from the organisational context of social care.
Difficulties of confidentiality in home care
First, confidentiality is always more difficult to protect where people are heavily dependent, as home care clients often are. Conversations may have to take place in situations in which it is difficult to prevent their being overheard, visitors’ comings and goings are difficult to conceal, and gossip, true or false, cannot easily be denied.
Confidentiality is a close cousin of privacy, which is equally threatened for those who are dependent because of disability — a bathroom door left open, a lack of control over personal space, carers' insensitivity to the varied boundaries people wish to set to protect their intimacy. Managers and staff have to be particularly vigilant to compensate for these factors, in order to preserve both their service users’ physical privacy and the discretion with which information about them is held and transmitted.
The need for such information to be known to a number of people in the agency constitutes the second difficulty over confidentiality. Service users often ask a staff member to treat something they tell them in confidence, but it is rarely possible to provide an unconditional guarantee and care workers should be warned against it. Rather, they should seek to explain to anxious clients that sharing information among the relevant members of the agency’s staff is very much in their own interest; indeed that providing continuity of care actively requires it.
A third area of concern arises from contacts with a range of people beyond the confines of the agency. If a client has a live-in carer or is in touch with relatives, friends, a representative or advocate, it should not be assumed that such people should automatically be privy to all of the information about the service user an agency has accumulated. People specifically nominated as a representative may have been appointed in order to pursue a particular issue or complaint, but are not necessarily entitled to have access to material beyond that specific brief.
Passing information to other people
The knowledge which a client may wish to share with carers, friends and family members may be constrained within even more subtle limits, and staff should certainly not assume anyone’s right to know without checking carefully with the individual.
Boundaries can be extremely sensitive, whether they relate to finances, to health and personal matters, or even to age and birthdays. A service user may have very good reasons for withholding information about their financial situation from children who might or might not inherit from them. They may have decided not to tell certain things about themselves to even a spouse or partner, and that is a right which must be respected. A client may wish to be less than frank about their age or about other personal details with people with whom they have otherwise quite close relationships. Workers should never assume that there are general patterns of who knows what, even within well-functioning families.
Nor is the right to secrecy automatically ceded in instances when the user has dementia or may be acting in ways which seem against their own best interest. Mental capacity legislation lays down stringent limits to situations in which decisions may lawfully be taken without consent and these safeguards apply as much to disclosure of information as to any other issues of care or treatment.
There are limits too to the information which a care agency may legitimately pass on to other organisations involved in other aspects of their service users’ care. It is true that there are complex counter-pressures here, as all health and social care bodies have a general responsibility of co-operation in their clients’ and patients’ interest. This duty featured prominently in debates in Parliament and elsewhere during the passage of the recently enacted Health and Social Care Act, it being repeatedly questioned whether the widespread introduction of competition into the NHS would not cut across the underlying duty to collaborate to provide optimal care.
Outcome 6: Co-operating with Other Providers of the Care Quality Commission’s Guidance about Compliance: Essential Standards of Quality and Safety touches on, but does not altogether resolve, this dilemma. The Outcome expands on the requirements of the similarly titled Regulation 24, which calls on service providers to share “appropriate information in relation to the admission, discharge and transfer of service users”. The Outcome fills this out to “share information in a confidential manner with all relevant services, individuals, team or agencies to enable the care, treatment and support needs of people who use services to be met”, and then adds that information sharing must be organised so that “the confidentiality of people who use services is protected”.
Like many of the statements urging confidentiality on practitioners, the Essential Standards are expressed in fairly general terms, forcing professionals back onto their own judgment in specific situations in which a conflict of interest appears. What should be done, for example, about a client who tells a care assistant about a health problem or admits to breaking agreed dietary restrictions, but then insists that the information should not be passed on to their GP or therapist?
In fairness to the Essential Standards, their predecessors, the National Minimum Standards for Care Homes, were even less specific, the section on Record Keeping not making any reference at all to the issue of confidentiality. A further stipulation, in a separate standard, that care records be kept in service users’ own homes, was laudably intended to give users power over what was written about them, but quite failed to take into account the added risk to confidentiality. The Code of Practice for Social Care Workers, produced by the General Social Care Council, to which all workers in the sector are required to subscribe, also has only a brief reference. It requires staff to “strive to maintain the trust and confidence of service users and carers” by — among other means — “respecting confidential information and clearly explaining agency policies about confidentiality”.
Three critical tests
Beyond such generalisations, are there any specific checks which can help practitioners to decide where the limits to confidentiality lie? Here are three suggested critical tests, expressed in the following questions: what is in the user’s best interest in this situation, who has a need to know this information, and how can we explain the position to the user to ensure that they have the greatest possible chance to contribute to the decision?
Honest answers to each or all of these questions can steer the prudent professional through most dilemmas which the duty of confidentiality poses.
Care workers will claim that they have the user’s best interest at heart in everything that they do, but applying the test to the passing of information is helpful. Simple chatter or gossip about service users, designed to amuse, entertain or just pass time, is immediately ruled out as serving the interest of the person passing on facts or the one hearing them but not the individual to whom they relate.
If the recipient of information is a fellow professional or someone with a relationship to the service user, the question as to whether or not they will use what they are told to advance the client’s interest is usually easily answered.
If there is any cause for hesitation, that probably indicates that the service user should be specifically asked about their wishes, or at very least that further advice should be sought from a supervisor or manager.
The need to know operates in much the same way. No one who will be using confidential information simply for their own benefit has a need to know, but for anyone whose actions to help a service user are likely to be influenced by their having or not having certain facts, the need to know flows naturally and properly from that relationship.
Thus a care worker’s friend outside the agency or a service user’s relative who is simply curious should generally not be given information about a user’s medical condition, while a GP, community nurse or hospital specialist is likely to make good use of it to the client’s benefit.
Perhaps the key principle of the confidentiality debate is transparency. If workers openly explain the process of passing and sharing information to their service users with candour and lucidity, it is likely that the majority of situations will pose no difficulty. Most people readily recognise that providing care involves not just individuals but teams of practitioners. Indeed, often they will welcome the fact that they do not have to retell their story endlessly but can depend on those receiving information to use it professionally and with respect.
For this trust to be established and maintained, those needing care and support must always feel confident that they are been fully informed of information about them that is being transferred. Once that sort of trust is established, confidentiality need carry few fears for either service users or those helping them.