A new study, published in the journal Palliative Medicine, has highlighted the importance of assessing the support needs of family caregivers before dying patients are discharged from hospital so that carers are better prepared for the end of life caregiving at home.
Researchers from the Universities of Manchester and Cambridge looked at barriers to supporting carers, which are often responsible for a breakdown of care at home and ultimately, for dying patients being unnecessarily readmitted to the hospital.
Interviews with healthcare professionals and carers revealed an absence of formal procedures for identifying carers' support needs within current hospital practice. The researchers describe an "organizational focus" on patients' needs that tend to not take the separate support needs of carers into account.
Carers were involved in discussions about discharge but in relation to patients' needs which overwhelmingly emphasized practical issues, such as equipment requirements, with little consideration of emotional needs.
Healthcare professionals felt that carers often had "unrealistic expectations" in terms of the realities of providing 24-hour care to a dying family member and lacked a clear understanding of the physical and emotional demands involved.
They also explained that carers tend to overestimate the level of community support that they will receive once at home, with expectations around support at night being a particular difficulty.
Another barrier identified by healthcare professionals was that carers often had limited awareness that their loved ones were approaching the end of life. In these cases, it was difficult for carers' concerns to be elicited and for healthcare professionals to put appropriate community support services in place.
Dr. Jane Collins, Chief Executive for Marie Curie said, "Enabling successful discharge of terminally ill patients home and prevention of readmissions are key issues for our health service. Family carers clearly play a central role in this but these findings show that they often feel uninvolved and unsupported – the result being that they find themselves unprepared for the challenges of caring and are forced to go back to the hospital when a crisis occurs."
"As well as the pain and distress this causes to patients and their families, readmissions place a huge unnecessary pressure on our health service. Recognising the personal burden involved in caring for a dying loved one and providing carers with the support they need and deserve is vital to providing to the compassionate, community model of care that we aspire to."
In response to the highlighted challenges, the study identified the utility of a Carer Support Needs Assessment Tool (CSNAT) for healthcare professionals, to help facilitate conversations with carers and prepare them for the realities of caring for someone at end of life.
The study, notes that this approach was viewed positively by both carers and healthcare professionals. Potential benefits of using the approach included; giving carers permission to consider their own needs, assisting communication around support needs, and offering a 'way in' to difficult end of life discussions.