Support Needs of Carers Making Proxy Health Care Decisions for People with dementia; a systematic meta-ethnography of qualitative studies

Problem

There are 50 million dementia sufferers world-wide. The disease runs a protracted course and comorbidities are common. Decisions about health care often need to be made when the person with dementia (PwD) lacks capacity to do so.This systematic review of qualitative studies aimed to review the existing literature with a view to developing new understanding of the support needs of carers facing these decisions and to inform practitioners who may be in a position to provide support.

Approach

A qualitative systematic review protocol was published on PROSPERO. A search was conducted using three online databases (MEDLINE with full text, CINAHL with full text and PsycINFO). We limited inclusion to decisions about specific medical treatments, and so excluded studies of decisions about place of stay (e.g nursing home placement) or limits of treatment (e.g. advanced care plans). A meta-ethnography was performed to develop descriptive themes and analytical constructs. Thirteen studies were included: five from Australia, five from the UK, two from the USA and one from the Netherlands. All included studies were primary qualitative research involving carers of people with dementia who had been involved in making proxy health care decisions.

Findings

Studies varied in their focus. Some explored decision making about specific health problems, such as cancer treatment decisions or use of antipsychotics, others focussed more broadly on the experience of making health care decisions for a PwD. Support needs fell into 3 main themes: information support, practical support and emotional support. Within the theme of information, carers needed information about dementia and the expected disease trajectory as well as information about the specific health care decision to be made. Health care practitioners (HCPs) who recognize the emotional burden of decision making and act as empathic guides for carers were highly valued. Practical factors included the importance of continuity of care, person centred care and early planning/legal issues such as lasting power of attorney (LPA). LPAs were often poorly understood and underutilised. Carers frequently described their expertise in the PwD being overlooked when health care decisions were made. As a result, opportunities to achieve true patient-centred care were missed.

Consequences

HCPs and policy makers could improve the experience of carers making proxy health care decisions for PwD by integrating carer input more explicitly into NHS frameworks/models of person-centred care. Education of families about the importance of using relevant legal structures such as LPAs for future decision making could be prioritised by HCPs.