The stress of uncertainty

8th October 2021

Transitions of care between settings, between home, care home, hospice or hospital, can be challenging for both patients and their families. However little is known about how these transitions are experienced differently by patients with palliative care conditions.

Patients and families in this study found that a lack of information and poor information led to stressful feelings of uncertainty. Patients and families adapted better to transitions if they were able to redefine their view of what was normal and ‘carry on as normal’.

The researchers noted that family caregivers often act as advocates in healthcare and play an important role, not only practically, such as arranging transport or coordinating care but also in providing emotional support.

Healthcare professionals should acknowledge that transitioning to a new care setting can be a stressful or difficult experience for patients and families, therefore, having options and being available to offer support is important when needed.

Recommended changes to improve experiences of transitions included improving communication between teams and across organisations, clarifying accountability as patients move across settings, standardising discharge processes and providing additional in-house staff training for different health professionals on psychosocial support, communication skills and information giving.

This study emphasises the importance of person-centred seamless care and demonstrates that better integration of palliative care in all settings is needed. Family needs assessment and support are crucial in transitions and caring for patients with advanced illness.

The researchers conclude that future research should explore the experiences of patients and families with a variety of ethnic and cultural backgrounds and with transitions from and to care homes, as every transition seems to be unique and context specific.

Guo P, Pinto C, Edwards B, Pask S, Firth A, O’Brien S, Murtagh FE. Experiences of transitioning between settings of care from the perspectives of patients with advanced illness receiving specialist palliative care and their family caregivers: A qualitative interview study. Palliat Med. 2021 Sep 3:2692163211043371. doi: 10.1177/02692163211043371. Online ahead of print. PMID: 34477022