Integrating lived experiences of out-of-hours health services for people with palliative and end-of-life care needs with national datasets for people dying in Scotland in 2016: A mixed methods, multi-stage design

Abstract

Background: Unscheduled care is used increasingly during the last year of life by people known to have significant palliative care needs. Aim: To document the frequency and patterns of use of unscheduled healthcare by people in their last year of life and understand the experiences and perspectives of patients, families and professionals about accessing unscheduled care out-of-hours. Design: A mixed methods, multi-stage study integrating a retrospective cohort analysis of unscheduled healthcare service use in the last year of life for all people dying in Scotland in 2016 with qualitative data from three regions involving service users, bereaved carers and general practitioners. Setting: Three contrasting Scottish Health Board regions and national datasets for the whole of Scotland. Results: People who died in Scotland in 2016 ( n = 56,407) had 472,360 unscheduled contacts with one of five services: telephone advice, primary care, ambulance service, emergency department and emergency hospital admission. These formed 206,841 individual continuous unscheduled care pathways: 65% starting out-of-hours. When accessing healthcare out-of-hours, patients and carers prioritised safety and a timely response. Their choice of which service to contact was informed by perceptions and previous experiences of potential delays and whether the outcome might be hospital admission. Professionals found it difficult to practice palliative care in a crisis unless the patient had previously been identified. Conclusion: Strengthening unscheduled care in the community, together with patient and public information about how to access these services could prevent hospital admissions of low benefit and enhance community support for people living with advanced illness.

Specialist palliative care out of hours telephone advice in Ireland: a national survey

“…Seventy-five per cent of responding organisations stated they have not had complaints made in relation to advice given from SPC OOH calls. Much of the research to date on OOH advice has been evaluating the experience of the patients and families 8 15 20. However, there is little evidence relating to the confidence and competence of staff providing OOH telephone advice or the support they need to effectively perform this service.…”

“…More than 70% of patients with palliative care needs would prefer to receive care at home if they can access appropriate services and support there 4. Recent international studies have indicated a growing demand for community care and a reduction in trends for inpatient hospice care 5–8…”

“…Goodrich et al 15 tell us that key components of OOH community care for patients at the end of life include having access to electronic healthcare records, that advanced care plans are shared between healthcare staff, that the person providing advice OOH is trained in communicating with palliative care patients and is able to deal with acute complex symptoms and provide support to a family in crisis 8…”

‘The palliative care ambulance’: A qualitative study of patient and caregiver perspectives of an ambulance service

“…5 Furthermore, a recent Scottish study highlighted that people with organ failure were less likely to be identified in primary care as requiring coordinated care, relative to other groups who require palliative care -and ambulance and emergency departments were the unscheduled services they used most. 6 Despite out-of-hours care being a significant component of palliative care at home, most resources tend to be directed to in-hours care. A recent report from the United Kingdom demonstrated that out-of-hours care is fragmented and inadequate.…”

“…5 Furthermore, a recent Scottish study highlighted that people with organ failure were less likely to be identified in primary care as requiring coordinated care, relative to other groups who require palliative care – and ambulance and emergency departments were the unscheduled services they used most. 6 …”