End-of-life

Purpose: Understanding the concept of a "good death" is crucial to end-of-life care, but our current understanding of what constitutes a good death is insufficient.

Background: Although people with dementia receive substantial care from informal sources, there is limited research available that investigates how these carers experience end-of-life care. Aim: This review aimed to identify what is currently known about carers’ experiences of providing end-of-life care to a family member or friend with dementia and draw implications for palliative care policy and service provision.

Background: Family carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers’ every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support.

Background For people living with dementia, the capacity to make important decisions about themselves diminishes as their condition advances. As a result, important decisions (affecting lifestyle, medical treatment and end of life) become the responsibility of someone else, as the surrogate decision-maker. This study investigated how surrogate decision-makers make important decisions on behalf of a person living with dementia.

Family caregivers may experience emotional and relational distress due to decreased intimacy and communication with their loved one at end-of-life. The purpose of the study was to examine intimacy behaviors in a family-patient relationship at the end-of-life with the central research question: Is there a difference in frequency of family caregivers’ intimacy acts, defined and recorded as verbal intimacy, affective intimacy, and physical intimacy with their dying loved one when comparing music therapy and chaplaincy?

It is important to ensure regional variances are considered when setting future end-of-life research priorities, given the differing demographics and service provision. This project sought to identify end-of-life research priorities within Greater Manchester (United Kingdom). Following an initial scoping exercise, six topics within the 10 national priorities outlined by The Palliative and end-of-life care Priority Setting Partnership were selected for exploration. A workshop involving 32 healthcare professionals and a consultation process with 26 family carers was conducted.