Improving regional care in the last year of life by setting up a pragmatic evidence-based Plan–Do–Study–Act cycle: results from a cross-sectional survey
Lena Ansmann,
Holger Pfaff,
Ingrid Schubert,
Ludwig Kuntz,
Stephanie Stock,
Sheila Payne,
Nadine Scholten,
Ute Karbach,
Stefanie Hamacher,
Raymond Voltz,
Christian Albus,
Frank Jessen,
Christian Rietz,
Frank Schulz-Nieswandt,
Julia Strupp,
Gloria Dust,
Nicolas Schippel
Affiliations
Lena Ansmann
Department of Organizational Health Services Research, University of Oldenburg, Oldenburg, Germany
Holger Pfaff
Faculty of Human Sciences and Faculty of Medicine, Institute for Medical Sociology, Health Services Research, and Rehabilitation Science, University of Cologne, Cologne, Germany
Ingrid Schubert
Ludwig Kuntz
Department of Business Administration and Healthcare Management, University of Cologne, Cologne, Germany
Stephanie Stock
Institute for Health Economics and Clinical Epidemiology, University of Cologne, Cologne, Germany
Sheila Payne
International Observatory on End of Life Care, University of Lancaster, Lancaster, UK
Nadine Scholten
University of Cologne, Faculty of Medicine and University Hospital Cologne, Institute of Medical Sociology, Health Services Research and Rehabilitation Science, Chair of Health Services Research, Cologne, Germany
Ute Karbach
Department of Rehabilitation Sociology, Faculty of Rehabilitation Sciences, Technical University Dortmund, Dortmund, Germany
Stefanie Hamacher
Institute of Medical Statistics and Computational Biology, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany
Raymond Voltz
1 Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
Christian Albus
Frank Jessen
Department of Psychiatry and Psychotherapy, University of Bonn, Bonn, Germany
Christian Rietz
Faculty of Educational and Social Sciences, Department of Educational Science, Heidelberg University of Education, Heidelberg, Germany
Frank Schulz-Nieswandt
Julia Strupp
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
Gloria Dust
Department of Palliative Medicine, University of Cologne, Faculty of Medicine and University Hospital, Cologne, Germany
Nicolas Schippel
Faculty of Human Sciences and Faculty of Medicine, Institute for Medical Sociology, Health Services Research, and Rehabilitation Science, University of Cologne, Cologne, Germany
Objectives To set up a pragmatic Plan–Do–Study–Act cycle by analysing patient experiences and determinants of satisfaction with care in the last year of life.Design Cross-sectional postbereavement survey.Setting Regional health services research and development structure representing all health and social care providers involved in the last year of life in Cologne, a city with 1 million inhabitants in Germany.Participants 351 bereaved relatives of adult decedents, representative for age and gender, accidental and suspicious deaths excluded.Results For the majority (89%) of patients, home was the main place of care during their last year of life. Nevertheless, 91% of patients had at least one hospital admission and 42% died in hospital. Only 60% of informants reported that the decedent had been told that the disease was leading to death. Hospital physicians broke the news most often (58%), with their communication style often (30%) being rated as ‘not sensitive’. Informants indicated highly positive experiences with care provided by hospices (89% ‘good’) and specialist palliative home care teams (87% ‘good’). This proportion dropped to 41% for acute care hospitals, this rating being determined by the feeling of not being treated with respect and dignity (OR=23.80, 95% CI 7.503 to 75.498) and the impression that hospitals did not work well together with other services (OR=8.37, 95% CI 2.141 to 32.71).Conclusions Following those data, our regional priority for action now is improvement of care in acute hospitals, with two new projects starting, first, how to recognise and communicate a limited life span, and second, how to improve care during the dying phase. Results and further improvement projects will be discussed in a working group with the city of Cologne, and repeating this survey in 2 years will be able to measure regional achievements.Trial registration number DRKS00011925.
