Stephen P Miranda1,2, Rachelle E Bernacki2,3,4,5,6, Joanna M Paladino2,3, Andrew D Norden5,7,8, Jane E Kavanagh2, Marissa C Palmor2,5, Susan D Block2,3,5,6,9. 1. 1 Department of Neurosurgery, Hospital of the University of Pennsylvania, Philadelphia, PA, USA. 2. 2 Ariadne Labs, Brigham and Women's Hospital and Harvard T. H. Chan School of Public Health, Boston, MA, USA. 3. 3 Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA. 4. 4 Harvard Medical School Center for Palliative Care, Boston, MA, USA. 5. 5 Harvard Medical School, Boston, MA, USA. 6. 6 Department of Medicine, Brigham and Women's Hospital, Boston, MA, USA. 7. 7 Department of Neurology, Brigham and Women's Hospital, Boston, MA, USA. 8. 8 Center for Neuro-Oncology, Dana-Farber Cancer Institute, Boston, MA, USA. 9. 9 Department of Psychiatry, Brigham and Women's Hospital, Boston, MA, USA.
Abstract
BACKGROUND: Early, high-quality serious illness (SI) conversations are critical for patients with glioblastoma (GBM) but are often mistimed or mishandled. OBJECTIVE: To describe the prevalence, timing, and quality of documented SI conversations and evaluate their focus on patient goals/priorities. DESIGN/PARTICIPANTS: Thirty-three patients with GBM enrolled in the control group of a randomized controlled trial of a communication intervention and were followed for 2 years or until death. At baseline, all patients answered a validated question about preferences for life-extending versus comfort-focused care and completed a Life Priorities Survey about their goals/priorities. In this secondary analysis, retrospective chart review was performed for 18 patients with GBM who died. Documented SI conversations were systematically identified and evaluated using a codebook reflecting 4 domains: prognosis, goals/priorities, end-of-life planning, and life-sustaining treatments. Patient goals/priorities were compared to documentation. MEASUREMENTS/ RESULTS: At baseline, 16 of 24 patients preferred life-extending care. In the Life Priorities Survey, goals/priorities most frequently ranked among the top 3 were "Live as long as possible," "Be mentally aware," "Provide support for family," "Be independent," and "Be at peace." Fifteen of 18 patients had at least 1 documented SI conversation (range: 1-4). Median timing of the first documented SI conversation was 84 days before death (range: 29-231; interquartile range: 46-119). Fifteen patients had documentation about end-of-life planning, with "hospice" and "palliative care" most frequently documented. Five of 18 patients had documentation about their goals. CONCLUSION: Patients with GBM had multiple goals/priorities with potential treatment implications, but documentation showed SI conversations occurred relatively late and infrequently reflected patient goals/priorities.
RCT Entities:
BACKGROUND: Early, high-quality serious illness (SI) conversations are critical for patients with glioblastoma (GBM) but are often mistimed or mishandled. OBJECTIVE: To describe the prevalence, timing, and quality of documented SI conversations and evaluate their focus on patient goals/priorities. DESIGN/PARTICIPANTS: Thirty-three patients with GBM enrolled in the control group of a randomized controlled trial of a communication intervention and were followed for 2 years or until death. At baseline, all patients answered a validated question about preferences for life-extending versus comfort-focused care and completed a Life Priorities Survey about their goals/priorities. In this secondary analysis, retrospective chart review was performed for 18 patients with GBM who died. Documented SI conversations were systematically identified and evaluated using a codebook reflecting 4 domains: prognosis, goals/priorities, end-of-life planning, and life-sustaining treatments. Patient goals/priorities were compared to documentation. MEASUREMENTS/ RESULTS: At baseline, 16 of 24 patients preferred life-extending care. In the Life Priorities Survey, goals/priorities most frequently ranked among the top 3 were "Live as long as possible," "Be mentally aware," "Provide support for family," "Be independent," and "Be at peace." Fifteen of 18 patients had at least 1 documented SI conversation (range: 1-4). Median timing of the first documented SI conversation was 84 days before death (range: 29-231; interquartile range: 46-119). Fifteen patients had documentation about end-of-life planning, with "hospice" and "palliative care" most frequently documented. Five of 18 patients had documentation about their goals. CONCLUSION:Patients with GBM had multiple goals/priorities with potential treatment implications, but documentation showed SI conversations occurred relatively late and infrequently reflected patient goals/priorities.
Entities:
Keywords:
advance care planning; end-of-life care; glioblastoma; goals of care; hospice; palliative care; physician–patient communication; serious illness conversation
Authors: Joseph R Linzey; Rachel Foshee; Sudharsan Srinivasan; Arjun R Adapa; Meghan L Wind; Carina Brake; Badih Junior Daou; Kyle Sheehan; Thomas C Schermerhorn; Teresa L Jacobs; Aditya S Pandey Journal: Acta Neurochir (Wien) Date: 2020-08-21 Impact factor: 2.216