D Hauke1, S Reiter-Theil2, E Hoster3, W Hiddemann1, E C Winkler4. 1. Department of Internal Medicine III (Haematology and Oncology), University Hospital Grosshadern, Munich, Germany. 2. Department of Medical and Health Ethics, Medical Faculty, University Hospital, Basel, Switzerland. 3. Department of Internal Medicine III, Institute for Medical Informatics, Biometry and Epidemiology, Ludwig-Maximilians University of Munich, Germany. 4. Department of Internal Medicine III (Haematology and Oncology), University Hospital Grosshadern, Munich, Germany. Electronic address: eva.winkler@med.uni-muenchen.de.
Abstract
BACKGROUND: This study examines the extent to which relatives of severely ill cancer patients are involved in the decision to limit treatment (DLT), their role in communicating patient wishes and the incidence of and reasons for disagreement with relatives. PATIENTS AND METHODS: This cohort study followed 70 patients with terminal cancer, for whom a limitation of life-prolonging treatment was being considered. 'Embedded researchers' recorded patients' wishes and the relatives' roles and disagreements with DLT. RESULTS: Although 63 out of 70 patients had relatives present during their care, only 32% of relatives were involved in DLT. Physicians were more likely to know the end-of-life (EOL) preferences for those patients who had visiting relatives than those without them (78% versus 29%, P = 0.014). Most relatives supported patients in voicing their preferences (68%), but one-third acted against the known or presumed wishes of patients (32%). Disagreements with patients' relatives occurred in 21% of cases, and predominantly when relatives held views that contradicted known patient preferences (71% versus 7%, P = 0.001). CONCLUSION: If relatives are to play an important part in EOL decision making, we must devise strategies to recognise their potential as patients' advocates as well as their own needs.
BACKGROUND: This study examines the extent to which relatives of severely ill cancerpatients are involved in the decision to limit treatment (DLT), their role in communicating patient wishes and the incidence of and reasons for disagreement with relatives. PATIENTS AND METHODS: This cohort study followed 70 patients with terminal cancer, for whom a limitation of life-prolonging treatment was being considered. 'Embedded researchers' recorded patients' wishes and the relatives' roles and disagreements with DLT. RESULTS: Although 63 out of 70 patients had relatives present during their care, only 32% of relatives were involved in DLT. Physicians were more likely to know the end-of-life (EOL) preferences for those patients who had visiting relatives than those without them (78% versus 29%, P = 0.014). Most relatives supported patients in voicing their preferences (68%), but one-third acted against the known or presumed wishes of patients (32%). Disagreements with patients' relatives occurred in 21% of cases, and predominantly when relatives held views that contradicted known patient preferences (71% versus 7%, P = 0.001). CONCLUSION: If relatives are to play an important part in EOL decision making, we must devise strategies to recognise their potential as patients' advocates as well as their own needs.
Authors: Aline Weis; Sabrina Pohlmann; Regina Poss-Doering; Beate Strauss; Charlotte Ullrich; Helene Hofmann; Dominik Ose; Eva C Winkler; Joachim Szecsenyi; Michel Wensing Journal: BMC Med Inform Decis Mak Date: 2020-07-13 Impact factor: 2.796
Authors: J Nicholas Dionne-Odom; Deborah Ejem; Rachel Wells; Amber E Barnato; Richard A Taylor; Gabrielle B Rocque; Yasemin E Turkman; Matthew Kenny; Nataliya V Ivankova; Marie A Bakitas; Michelle Y Martin Journal: PLoS One Date: 2019-03-13 Impact factor: 3.240
Authors: J Nicholas Dionne-Odom; Rachel D Wells; Kate Guastaferro; Andres Azuero; Bailey A Hendricks; Erin R Currie; Avery Bechthold; Chinara Dosse; Richard Taylor; Rhiannon D Reed; Erin R Harrell; Shena Gazaway; Sally Engler; Peg McKie; Grant R Williams; Rebecca Sudore; Christine Rini; Abby R Rosenberg; Marie A Bakitas Journal: J Pain Symptom Manage Date: 2021-07-31 Impact factor: 3.612
Authors: Katsiaryna Laryionava; Timo A Pfeil; Mareike Dietrich; Stella Reiter-Theil; Wolfgang Hiddemann; Eva C Winkler Journal: BMC Palliat Care Date: 2018-02-17 Impact factor: 3.234