Monday, January 17, 2011

A Problem of Privacy ...

Have you ever been frustrated by your inability to give (as a helping professional) or receive (as a family caregiver) patient information needed to enhance family caregiving? It is becoming a more frequent problem as family caregivers are asked to take on more responsibility for ill or disabled loved ones at home.

In a 2010 Nursing Ethics article entitled, Information Disclosure to Family Caregivers: Applying Thiroux's Framework, John Rowe of Open University, UK, makes an arguement for " ... seeking a re-balance so that more consideration is given to the rights of caregivers as they are faced with taxing responsibilities". He does not advocate giving open access to patient information but does suggest that we begin to see "the patient" as the family unit and provide family caregivers with information that will directly affect their lives.

Mr Rowe describes the information-sharing problem thus:

Willingness to share information is central to an effective relationship between practitioners and family caregivers. Active and informed involvement of family caregivers can be vital to recovery, even where there is conflict between the needs and wishes of service users and those of their caregivers. For example, a service user's care plan may stipulate attendance at a day centre to take part in occupational or recreational activities and foster community participation. The caregiver is often required to urge attendance, especially when the service user lacks drive and motivation, and believes that he or she already engages in purposeful activities outside the social care system. The caregiver may use this "free" time to shop or see friends and so gain a secondary benefit from the service user's attendance at the day centre. At a day centre review meeting in the absence of the caregiver, the service user's wish to stop attending may be agreed. In this situation the desires and wishes of the service user and those of the caregiver are in conflict.

In the circumstances given above it is central to the service user's recovery plan to attend a day centre, but the service user would not do so without the active urging of the caregiver. The caregiver therefore has a pivotal role in the service user's recovery, but not it seems in the decision-making process. Rethink, a mental health charity and campaigning organization, reported that many practitioners use the principle of confidentiality to block sharing of information, thereby excluding caregivers from care planning and other discussions, with the relationship between caregivers and professionals being the actual root of the problem.

Many caregivers subsequently feel unsupported and excluded from decision making. "Confidentiality smokescreens" thus make things worse: practitioners find it easier and safer to say nothing, and do not take into account caregivers' rights to basic information to enable them to fulfill their caring role. This makes matters worse for caregivers because they are prevented from understanding mental health issues and how to deal with the challenges they encounter and, frequently, service users also suffer.

After using Thiroux's Ethical Framework to provide guidance for practitioners facing these confidentiality problems, Mr Rowe concludes with these words:

An ethical case for disclosure would have to include the nurse as part of the relationship triangle, with the nurse committed to engagement while seeking what is a good outcome. This draws into question the role of the nurse: whether the nurse is for the service user, or for the care context as a whole, with the context including all the major players in practice situations. This latter approach would contradict the accumulated legal and professional rules that still focus heavily on respecting patient autonomy and the rights
of confidentiality.

There needs to be a reappraisal of the rights to confidentiality in situations where one person's rights are supported and upheld at the expense of the rights of others, especially for those who provide significant support to enable a cared for person to have a better life.

Better guidance on when to breach confidentiality that recognizes the level of dependency and the relationship between caregivers and service users is needed. This guidance should acknowledge the ethical imperatives for a specific course of action, taking into account what is good in any particular situation to complement guidance on what is bound by law, professional codes and health care obligations. Nurses should be guided to look for what matters, not what is prescribed.

That helping professionals are looking into the impact of withheld information upon the stress level of family caregivers is encouraging and may contribute to a lessening of vulnerability to compassion fatigue in both groups - by reducing moral distress on the part of helping professionals and by lessening the experience of helplessness in family caregivers.

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