End of life care

Objective: To explore factors that influence how informal caregivers manage medications as part of caring for hospice patients.

Methods: Semistructured, open-ended interviews were conducted with 23 informal caregivers and 22 hospice providers from 4 hospice programs in the Chicago metropolitan areas. Qualitative analysis was conducted consistent with the grounded theory approach.

Background: People with dementia often die badly, receiving end-of-life care of poorer quality than that given to those who are cognitively intact.

Aims: To define good end-of-life care for people with dementia and identify how it can be delivered across care settings in the UK.

Method: In-depth interviews were conducted with 27 bereaved family carers and 23 care professionals recruited from the community, care homes, general hospitals and continuing care units. Data were analysed using the constant comparison method.

Background: Collective caregiving, performed by caregivers working in pairs (informal primary and secondary caregivers working together), is common in the hospice setting. Research suggests that caregiving pairs may experience different caregiver outcomes. However, little is known about how caregiving pairs differ from solo caregivers (informal primary caregivers) on outcome measures.

Place of death is at times suggested as an outcome for palliative care services. This study aimed to describe longitudinal preferences for place of care and place of death over time for patients and their caregivers. Longitudinal paired data of patient/caregiver dyads from a prospective unblinded cluster randomised control trial were used. Patients and caregivers were separately asked by the palliative care nurse their preference at that time for place of care and place of death.

Six recorded stories giving first-hand personal accounts of carers of people experiencing dementia or those nearing the end of their lives. Each story can be used to highlight and support areas of learning covered by the Care Council's Knowledge Sets for dementia and end of life care.