Chloé Prod'homme1,2,3, Dominique Jacquemin1,4, Licia Touzet5, Regis Aubry6, Serge Daneault7, Laurent Knoops4,8. 1. 1 ETHICS (Experiment, Transhumanism, Human Interactions, Care and Society) - EA7446, Lille Catholic University, Lille, France. 2. 2 Department of Hematology, CHU Lille, Lille, France. 3. 3 Faculté de Médecine et de Maïeutique, Université Catholique de Lille, Lille, France. 4. 4 IREC, Université Catholique de Louvain, Brussels, Belgium. 5. 5 Department of Palliative Medicine, CHU Lille, Lille, France. 6. 6 Palliative Care Unit, Jean Minjoz Hospital, Besancon, France. 7. 7 Department of Palliative Care, Montreal University, Montreal, QC, Canada. 8. 8 Unité de Soins Continus, Cliniques Universitaires Saint-Luc, Brussels, Belgium.
Abstract
BACKGROUND: Integrated palliative care is correlated with earlier end-of-life discussion and improved quality of life. Patients with haematological malignancies are far less likely to receive care from specialist palliative or hospice services compared to other cancers. AIM: The main goal of this study was to determine hematologists' barriers to end-of-life discussions when potentially fatal hematological malignancies recur. DESIGN: Qualitative grounded theory study using individual interviews. SETTING/PARTICIPANTS: Hematologists ( n = 10) from four hematology units were asked about their relationships with their patients and their attitudes toward prognosis and end-of-life discussions at the time of recurrence. RESULTS: As long as there are potential treatments, hematologists fear that end-of-life discussions may undermine their relationship and the patient's trust. Because of their own representations, hematologists have great difficulty opening up to their patients' end-of-life wishes. When prognosis is uncertain, negative outcome, that is, death, is not fully anticipated. Persistent hope silences the threat of death. CONCLUSION: This study reveals some of the barriers clinicians face in initiating early discussion about palliative care or patients' end-of-life care plan. These difficulties may explain why early palliative care is little integrated into the hematology care model.
BACKGROUND: Integrated palliative care is correlated with earlier end-of-life discussion and improved quality of life. Patients with haematological malignancies are far less likely to receive care from specialist palliative or hospice services compared to other cancers. AIM: The main goal of this study was to determine hematologists' barriers to end-of-life discussions when potentially fatal hematological malignancies recur. DESIGN: Qualitative grounded theory study using individual interviews. SETTING/PARTICIPANTS: Hematologists ( n = 10) from four hematology units were asked about their relationships with their patients and their attitudes toward prognosis and end-of-life discussions at the time of recurrence. RESULTS: As long as there are potential treatments, hematologists fear that end-of-life discussions may undermine their relationship and the patient's trust. Because of their own representations, hematologists have great difficulty opening up to their patients' end-of-life wishes. When prognosis is uncertain, negative outcome, that is, death, is not fully anticipated. Persistent hope silences the threat of death. CONCLUSION: This study reveals some of the barriers clinicians face in initiating early discussion about palliative care or patients' end-of-life care plan. These difficulties may explain why early palliative care is little integrated into the hematology care model.
Entities:
Keywords:
Advance care planning; hematology; hope; palliative care; recurrence
Authors: Mary-Joanne Verhoef; Ellen J M de Nijs; Claudia S Ootjers; Marta Fiocco; Anne J Fogteloo; Christian Heringhaus; Corrie A M Marijnen; Nanda Horeweg; Yvette M van der Linden Journal: Am J Hosp Palliat Care Date: 2019-12-23 Impact factor: 2.500