Communication of palliative care needs in discharge letters from hospice providers to primary care: a multisite sequential explanatory mixed methods study

Abstract

Background The provision of palliative care is increasing, with many people dying in community-based settings. It is essential that communication is effective if and when patients transition from hospice to community palliative care. Past research has indicated that communication issues are prevalent during hospital discharges, but little is known about hospice discharges. Methods An explanatory sequential mixed methods study consisting of a retrospective review of hospice discharge letters, followed by hospice focus groups, to explore patterns in communication of palliative care needs of discharged patients and describe why these patients were being discharged. Discharge letters were extracted for key content information using a standardised form. Letters were then examined for language patterns using a linguistic methodology termed corpus linguistics. Thematic analysis was used to analyse the focus group transcripts. Findings were triangulated to develop an explanatory understanding of discharge communication from hospice care. Results We sampled 250 discharge letters from five UK hospices whereby patients had been discharged to primary care. Twenty-five staff took part in focus groups. The main reasons for discharge extracted from the letters were symptoms “managed/resolved” (75.2%), and/or the “patient wishes to die/for care at home” (37.2%). Most patients had some form of physical needs documented on the letters (98.4%) but spiritual needs were rarely documented (2.4%). Psychological/emotional needs and social needs were documented in 46.4 and 35.6% of letters respectively. There was sometimes ambiguity in “who” will be following up “what” in the discharge letters, and whether described patients’ needs were resolved or ongoing for managing in the community setting. The extent to which patients received a copy of their discharge letter varied. Focus groups conveyed a lack of consensus on what constitutes “complexity” and “complex pain”. Conclusions The content and structure of discharge letters varied between hospices, although generally focused on physical needs. Our study provides insights into patterns associated with those discharged from hospice, and how policy and guidance in this area may be improved, such as greater consistency of sharing letters with patients. A patient-centred set of hospice-specific discharge letter principles could help improve future practice.

Entlassmanagement im Kontext eines Palliativdienstes im Krankenhaus – Entwicklung und Anwendung von Qualitätskriterien

“…Unsere Ergebnisse decken sich zu großen Teilen mit ähnlichen Studien im palliativen Kontext. Diese konnten ebenfalls das regelmäßige Fehlen von relevanten Informationen in den Entlassdokumenten nachweisen und empfehlen Richtlinien zur Implementierung dieser Daten [27,28]. Da diese Dokumente derzeit häufig von Ärzt:innen in jungen Stadien ihrer Ausbildung verfasst werden, sollte bei der Verbesserung auch curricularen Faktoren während der universitären Ausbildung eine entscheidende Bedeutung zukommen [29].…”

Improving patients’, carers’ and primary care healthcare professionals’ experiences of discharge communication from specialist palliative care to community settings: a protocol for a qualitative interview study

“…hospices), which is not only for people in the last days of life, but is available to intervene and support people with life-limiting illnesses whenever they develop complex palliative needs [ 2 – 4 ]. Patients who have benefited from specialist intervention during periods of acute/complex palliative care needs often transition from specialist-to-primary care where their day-to-day healthcare needs will be managed by general practice and community teams, once such needs have been managed and/or controlled [ 5 ]. A previous systematic review on hospice discharge [ 6 ] estimated discharge rates from 5–23%.…”

“…Our recent study looking at hospice discharge in five UK hospices, indicated that hospice patients (and where relevant, their carers) are not consistently receiving or being offered discharge letters [ 5 ]. Although hospice care seeks to provide a holistic service, we also found that there was a focus on physical needs in these letters, with much less focus on psychological/emotional and social needs, with spiritual needs being rarely documented (2.4%) [ 5 ].…”

“…Our previous research [ 5 , 20 ] found heterogeneity in the quality of specialist palliative care discharge communications to primary care, along with the inconsistencies in copying in patients to discharge communication. We also found that little is known about how being discharged from specialist palliative services affects patients’ and carers’ experiences of end of life care, or what information community teams need for managing the patient’s ongoing care;…”

“…Improving discharge communication has the potential to increase shared understanding of the patient’s condition, their symptoms and planned management of pain, symptoms and holistic needs. Improved communication should empower those receiving such information to better enact the patient’s chosen advance care plan [ 5 , 20 ], which may in turn improve a patient’s quality of life and experience of death and dying. Therefore, this study aims to understand how discharge communications from specialist palliative care services to primary care are currently being experienced by those receiving them, and how this can be improved in order to ensure improved care at this crucial and time-sensitive part of the healthcare journey.…”