How continuity of care is experienced within the context of integrated palliative care: A qualitative study with patients and family caregivers in five European countries

Abstract

Patients and family caregivers most likely experience continuity of care by having a small number of trusted health care professionals who are available, provide multidisciplinary care and regularly transfer information to all health care professionals involved. Optimizing continuity of care requires further integration of integrated palliative care initiatives with other health care professionals involved in the patients' care networks.

Early palliative care for those who care: A qualitative exploration of cancer caregivers’ information needs during hospital stays

“…In line with international findings (Den Herder‐van der Eerden, ), our results highlight the need for continuity of care after discharge from hospital. Information about what should happen when and where, or whom to contact are required early in the inpatient treatment phase in order to give caregivers sufficient time to prepare.…”

Disseminating research findings using a massive online open course for maximising impact and developing recommendations for practice

“…Once again, this may reflect the daily experience of staff. From our own research on integrated palliative care [9,10], we found that in some countries, this was only achieved by practitioners giving personal contact numbers and being permanently 'on call'. Whilst this was not true in all countries, it may go some way to explaining why the MOOC participants rated maintaining a work life balance (REC 9) higher than those at the consensus workshop.…”

“…This is the first independent survey that specifically elicits practitioners' (and other professionals') views on integrated palliative care, and compares this large sample with the views of experts [9]. Our study is innovative in that it incorporated a wide range of views on recommendations and priorities for integrated palliative care rather than just the views of experts.…”

“…The authors were part of a Framework Programme 7 (FP7) European Commission funded study, called InSup-C, which was designed to evaluate best practice in integrating palliative care services in five countries: Netherlands, Belgium, Germany, Hungary and the United Kingdom (UK) [8][9][10]. Using multiple embedded case study methods, it aimed to find out the best ways to deliver care to people who have advanced cancer, heart failure or lung disease as they come towards the end of their lives.…”

Should every patient have goals of care discussed in the emergency department? No

“…Additionally, initiating comprehensive end‐of‐life discussions in the ED could have unforeseen negative consequences, particularly interfering with the continuity of care. A European study looking at the importance of continuity of care described ‘trusted relationships with a small number of key health care professionals’ as ‘essential’ in palliative care . Initiating this discussion in the ED not only adds additional voices to the discussion – a ‘too many chefs’ situation – but also forces the patient and their family to begin the conversation with one person or team and then continue it with another, undoing or rendering useless any established rapport with the emergency team and forcing the patient to build new relationships with another team.…”