Ai Chikada1, Sayaka Takenouchi1, Yoshiki Arakawa2, Kazuko Nin1. 1. Department of Human Health Sciences, Graduate School of Medicine, Kyoto University, Kyoto, Japan. 2. Department of Neurosurgery, Graduate School of Medicine, Kyoto University, Kyoto, Japan.
Abstract
BACKGROUND: End-of-life discussions (EOLDs) in patients with high-grade glioma (HGG) have not been well described. Therefore, this study examined the appropriateness of timing and the extent of patient involvement in EOLDs and their impact on HGG patients. METHODS: A cross-sectional survey was conducted among 105 bereaved families of HGG patients at a university hospital in Japan between July and August 2019. Fisher's exact test and the Wilcoxon rank-sum test were used to assess the association between patient participation in EOLDs and their outcomes. RESULTS: In total, 77 questionnaires were returned (response rate 73%), of which 20 respondents replied with refusal documents. Overall, 31/57 (54%) participated in EOLDs at least once in acute hospital settings, and a significant difference was observed between participating and nonparticipating groups in communicating the patient's wishes for EOL care to the family (48% vs 8%, P = .001). Moreover, >80% of respondents indicated that the initiation of EOLDs during the early diagnosis period with patients and families was appropriate. Most EOLDs were provided by neurosurgeons (96%), and other health care providers rarely participated. Additionally, patient goals and priorities were discussed in only 28% of the EOLDs. Patient participation in EOLDs was not associated with the quality of EOL care and a good death. CONCLUSIONS: Although participation in EOLDs is relatively challenging for HGG patients, this study showed that participation in EOLDs may enable patients to express their wishes regarding EOL care. It is important to initiate EOLDs early on through an interdisciplinary team approach while respecting patient goals and priorities.
BACKGROUND: End-of-life discussions (EOLDs) in patients with high-grade glioma (HGG) have not been well described. Therefore, this study examined the appropriateness of timing and the extent of patient involvement in EOLDs and their impact on HGG patients. METHODS: A cross-sectional survey was conducted among 105 bereaved families of HGG patients at a university hospital in Japan between July and August 2019. Fisher's exact test and the Wilcoxon rank-sum test were used to assess the association between patient participation in EOLDs and their outcomes. RESULTS: In total, 77 questionnaires were returned (response rate 73%), of which 20 respondents replied with refusal documents. Overall, 31/57 (54%) participated in EOLDs at least once in acute hospital settings, and a significant difference was observed between participating and nonparticipating groups in communicating the patient's wishes for EOL care to the family (48% vs 8%, P = .001). Moreover, >80% of respondents indicated that the initiation of EOLDs during the early diagnosis period with patients and families was appropriate. Most EOLDs were provided by neurosurgeons (96%), and other health care providers rarely participated. Additionally, patient goals and priorities were discussed in only 28% of the EOLDs. Patient participation in EOLDs was not associated with the quality of EOL care and a good death. CONCLUSIONS: Although participation in EOLDs is relatively challenging for HGG patients, this study showed that participation in EOLDs may enable patients to express their wishes regarding EOL care. It is important to initiate EOLDs early on through an interdisciplinary team approach while respecting patient goals and priorities.
Authors: Daniel I Jacobs; Priya Kumthekar; Becky V Stell; Sean A Grimm; Alfred W Rademaker; Laurie Rice; James P Chandler; Kenji Muro; MaryAnne Marymont; Irene B Helenowski; Lynne I Wagner; Jeffrey J Raizer Journal: Neurooncol Pract Date: 2014-05-05
Authors: Eefje M Sizoo; H Roeline W Pasman; Janine Buttolo; Jan J Heimans; Martin Klein; Luc Deliens; Jaap C Reijneveld; Martin J B Taphoorn Journal: Eur J Cancer Date: 2011-12-05 Impact factor: 9.162
Authors: Dong Wook Shin; JiEun Choi; Mitsunori Miyashita; Jin Young Choi; Jina Kang; Young Ji Baik; Ha Na Mo; Jong Soon Choi; Young Sun Son; Hae Sook Lee Journal: J Pain Symptom Manage Date: 2011-04-07 Impact factor: 3.612
Authors: Eefje M Sizoo; Martin J B Taphoorn; Bernard Uitdehaag; Jan J Heimans; Luc Deliens; Jaap C Reijneveld; H Roeline W Pasman Journal: Oncologist Date: 2013-01-18
Authors: J A F Koekkoek; L Dirven; J C Reijneveld; E M Sizoo; H R W Pasman; T J Postma; L Deliens; R Grant; S McNamara; W Grisold; E Medicus; G Stockhammer; S Oberndorfer; B Flechl; C Marosi; M J B Taphoorn; J J Heimans Journal: J Neurooncol Date: 2014-07-20 Impact factor: 4.130
Authors: Andrea Pace; Johan A F Koekkoek; Martin J van den Bent; Helen J Bulbeck; Jane Fleming; Robin Grant; Heidrun Golla; Roger Henriksson; Simon Kerrigan; Christine Marosi; Ingela Oberg; Stefan Oberndorfer; Kathy Oliver; H Roeline W Pasman; Emilie Le Rhun; Alasdair G Rooney; Roberta Rudà; Simone Veronese; Tobias Walbert; Michael Weller; Wolfgang Wick; Martin J B Taphoorn; Linda Dirven Journal: Neurooncol Pract Date: 2020-07-16
Authors: Lara Fritz; Linda Dirven; Jaap C Reijneveld; Johan A F Koekkoek; Anne M Stiggelbout; H Roeline W Pasman; Martin J B Taphoorn Journal: Cancers (Basel) Date: 2016-11-08 Impact factor: 6.639