“I think that she would have wanted. . .”: Qualitative interviews with bereaved caregivers reveal complexity in measuring goal-concordant care at the end of life

Abstract

Background: Experts consider goal-concordant care an important healthcare outcome for individuals with serious illness. Despite their relationship to the patient and knowledge about the patient’s wishes and values, little is known about bereaved family caregivers’ perceptions of how end-of-life care aligns with patient goals and preferences. Aim: To understand caregivers’ perceptions about patients’ care experiences, the extent to which care was perceived as goal-concordant, and the factors that contextualized the end-of-life care experience. Design: Qualitative interview study employing a semi-structured interview guide based on the National Health and Aging Trends Survey end-of-life planning module. Template analysis was used to identify themes. Setting/participants: Nineteen recently bereaved family caregivers of people with serious illness in two academic medical centers in the Northeastern United States. Results: Most caregivers reported goal-concordant care, though many also recalled experiences of goal discordance. Three themes characterized care perceptions and related to perceived quality: communication, relationships and humanistic care, and care transitions. Within communication, caregivers described the importance of clear communication, inadequate prognostic communication, and information gaps that undermined caregiver confidence in decision making. Patient-clinician relationships enriched care and were considered higher-quality when felt to be humanistic. Finally, care transitions impacted goal discordance when marked by logistical barriers, a need to establish relationships with new providers, inadequate information transfer, and poor care coordination. Conclusions: Bereaved caregivers commonly rated care as goal-concordant while also identifying areas of disappointing and low-quality care. Communication, relationships and humanistic care, and care transitions are modifiable quality improvement targets for patients with advanced cancer.

A 6-Week Program to Strengthen Resiliency Among Women With Metastatic Cancer: A Randomized Clinical Trial

“… 55 , 56 Balancing the dual goals of living as well and as fully as possible while also preparing to face one’s mortality can be extremely challenging. 57 , 58 The World Health Organization has underscored the role of palliative care in integrating the psychological and spiritual aspects of patient care and offering a support system to help patients live as actively as possible until death. 59 The recent Institute of Medicine (IOM) report, Dying in America (2015) also highlighted the need for viable programs to address existential and spiritual distress among those with advanced illness.…”

„Alleine schaffe ich das nicht…“ – Bedürfnisanalyse der Angehörigen von Palliativpatienten im Entlassungsprozess aus dem Krankenhaus

“…Auf diesem Weg können Informationsblätter ebenfalls zur Qualitätsverbesserung der Pflegeüberleitung und des Entlassungsmanagements beitragen. Die Pflegeüberleitung und -koordination sind modifizierbare Ziele für eine Qualitätsverbesserung der Pflege zu Hause am Lebensende [14]. Eine Einbeziehung der Angehörigen in die pflegerische und gegebenenfalls medizinische Versorgung, bereits während des stationären Aufenthaltes, kann die Angehörigen stärken und praktische Kompetenzen vermitteln.…”

“…Sie berichten von einem hohen Beratungs-und Informationsbedarf, dem Wunsch nach Vermittlung von Sicherheit und einer Überforderung im Umgang mit dem Thema Sterben und Tod [12,13]. Der Übergang zwischen den Versorgungssettings ist mit Belastungen für die Patient*innen und Angehörigen und dem Risiko für Kommunikationsschwierigkeiten, beziehungsweise unzureichender Informationsweitergabe zwischen den Versorgenden verbunden [14]. Die Zufriedenheit mit dem Versorgungsübergang hängt mit den Informationen zum Entlassungsprozess, dem Zeitpunkt der Informationsvermittlung, dem Vorhandensein eines zuverlässigen Mitarbeiters und einer ambulanten ärztlichen Betreuung zusammen [15].…”

49 The information and communication needs of patients with advanced incurable cancer: a rapid review

“…They were all qualitative study designs but included a range of qualitative methods and analysis. The data collection methods included semi-structured interviews (1,2,3,4,5,6,8,11,12,13,14,15,16,17,18,19,20,21,22,23,24,26,28,29,30,31,32,33,34,36,38), structured interviews (35), narrative interviews (9,25) and ethnographic (observations and conversations) (6,7,25,37). The analysis methods included thematic analysis (1,2,5,7,8,11,17,18,20,21,22,24,26,…”