Jun 01, 2012
Shared responsibility? Family caregivers and home care nurses
Last year, Manitoba became the first Canadian province to pass a caregiver recognition act. It states that all caregivers “should be acknowledged as individuals with their own needs within and beyond the caring role” and be supported to achieve optimum health, economic well-being and participation in society. Like national caregiver acts in Australia and the United Kingdom, the Manitoba legislation asserts a view of caregivers as individuals separate from clients. U.K. law goes so far as to require that case managers assess and take into account the distinct needs of family caregivers. By contrast, in Canada it is more common that the presence of family support will reduce the amount of formal services allocated to a client, an approach that views family as substituting for these services.
I believe that health-care organizations and practitioners can best support family caregivers by not considering them as a resource or substitute for formal services. Family members already perform most of the home care for those in need and support a model of shared responsibility between informal and formal care. Yet provincial and regional home and community care policies imply that family members should have primary responsibility, with formal services playing a supplemental role.
The Canadian Hospice Palliative Care Association and the Canadian Caregiver Coalition highlight ethical concerns that arise when family members feel pressured into caregiving, particularly when they are unprepared or do not fully understand what is involved. In my research with Kelli Stajduhar at the University of Victoria, bereaved family caregivers recalled their fears about their ability to help the patient — some even felt they had inadvertently contributed to hastening the patient’s death.
Research suggests that when home care nurses — whether RNs or LPNs — develop a relationship with a client, they may expect family members to take more responsibility in providing care. They may encourage and promote the benefits of family care, idealizing it as a way to respect the client’s wishes or downplaying the challenges, risks and complexities of certain tasks. Indeed, nurses’ managers may view such teaching and encouragement as important professional skills that align with organizational goals to discharge clients from home care as soon and as safely as possible.
Health-care organizations and practitioners can respect the dignity of family caregivers and protect their well-being by ensuring that caregivers’ willingness and ability to provide different levels and types of care are assessed repeatedly over time. If a family member is present at a client interview, the nurse and case manager must not assume that person will be the primary caregiver. They must remember the challenges, strain and risks involved in family care work. Family members who simply cannot, for various reasons, provide client care are not abandoning their responsibilities because of a lack of “family values” — they may live at a distance or be estranged, have health issues, work full time or have competing family responsibilities. Ultimately, health-care providers must respect a family member’s decision not to be involved in particular levels or kinds of care.
If home care nurses are to appropriately support family caregivers, organizational policies must allow for flexibility and sensitivity in responding to a variety of circumstances. This approach will help ensure that family members are treated as individuals, not as a free resource.