Implications for practice and research

• It is important to introduce and integrate the concept of palliative and end-of-life care well in advance of anticipated death to allow patients and those important to them to reframe their expectations and understanding of their condition that enables patients and families to find meaning and value in the last phase of life.

• There is a need for more research into the barriers and enablers of transition to end-of-life care.

Context

This paper addresses an important topic as communication and shared decision making are integral to good end-of-life care.1 It interrogates the transition from cure-focused medical care to care that prioritises comfort and quality of life and quality of dying. It highlights the need to better understand how patients, their families and healthcare professionals negotiate this transformation. Unfortunately situating the study in the emotive language of suffering and describing the journey to the end of life as ‘fraught with distress and conflict’ detracts from a clear, evidenced-based description of the gap in evidence that this study begins to address.

Findings

Fifty-six papers that derived from 50 primary qualitative research studies were included in the metasynthesis. The paper highlights the importance of the ongoing, continued provision of information, effective support, respect and control promoted ‘reframing perceptions’ and capacity to embrace a changed identity. This allowed patient and family to find meaning and value in their final phase of life. The findings are summarised into a model of transition to comfort-focused care; however, there is a disappointing lack of a robust rationale or discussion of how the model was developed.

Commentary

This article synthesises qualitative literature about the process of transition from cure-focused to comfort-focused care from the perspectives of patients, family members and healthcare providers. However, the breadth of the discussion distracts from the specificity of the issues confronting patients. This is particularly important in the context of increasing numbers of people living with and dying from dementia.

The study confirms that patients need to receive clear and consistent information to achieve an understanding of change in aims of care.2 It endorses the endeavours of nurses to meaningfully contextualise medical information and to help family members understand events and identify the likely impact on this particular patient’s life. It highlights how detrimental it can be when members of the interdisciplinary team lack understanding of the aims of palliative care.

The needs for individuals to change their identities and sources for hope is emphasised. Intriguingly, this contrasts with the findings of a related metasynthesis that considered the transitions of people with cancer experienced by persons in palliative care, which emphasised the need to develop strategies to achieve and maintain normality in everyday life with their disease.3 Both studies emphasise the importance of hope and meaning making, preparing, strengthening and enjoying relationships and living well one day at a time. The strength of this study is that it does highlight the complex negotiations that are ongoing for patients, their families and healthcare professional as death approaches.