Bereaved Caregivers Perspectives of Negative Communication Experiences Near the End of Life for Adolescents and Young Adults with Cancer

Author(s):  
Bryan A. Sisk ◽  
Megan A. Keenan ◽  
Ginny L. Schulz ◽  
Marie Bakitas ◽  
Erin R. Currie ◽  
...  
PEDIATRICS ◽  
2012 ◽  
Vol 130 (5) ◽  
pp. 897-905 ◽  
Author(s):  
L. Wiener ◽  
S. Zadeh ◽  
H. Battles ◽  
K. Baird ◽  
E. Ballard ◽  
...  

2009 ◽  
Vol 7 (1) ◽  
pp. 27-35 ◽  
Author(s):  
Sebastien Montel ◽  
Valerie Laurence ◽  
Laure Copel ◽  
Helene Pacquement ◽  
Cecile Flahault

ABSTRACTObjective:To improve the palliative care and more effectively meet the needs of young patients and their families at the end of life, the authors investigated the place of death of adolescents and young adults treated in their institution and identified some of the factors influencing the choice of place of death.Methods:The parents and/or partners of adolescents and young adults (15 to 25 years old) who died at Institut Curie (cancer center) between 2000 and 2003 were contacted. Twenty-one families agreed to participate in the interview between October 2005 and April 2006. Analysis of the interviews comprised a descriptive part and a thematic part.Results:Nineteen out of 21 (90%) families declared that they did not really choose their child's place of death due to lack of time. However, all families said that they preferred the hospital. No family attended a bereavement group after their child's death and only 3 families (14%) consulted a mental health care professional. Thematic analysis showed that representations and beliefs concerning life and death at least partly determined the family's capacity to discuss the place of death with their child.Significance of results:Although progress has been made over recent years in France, there is still considerable room for improvement of palliative care to more effectively meet the needs of young patients and their families at the end of life.


2016 ◽  
Vol 34 (15_suppl) ◽  
pp. e21518-e21518
Author(s):  
Emily E. Johnston ◽  
Elysia Marie Alvarez ◽  
Olga Saynina ◽  
Lee Sanders ◽  
Smita Bhatia ◽  
...  

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 10559-10559
Author(s):  
Hallie Coltin ◽  
Adam Rapoport ◽  
Chenthila Nagamuthu ◽  
Nancy N. Baxter ◽  
Paul C. Nathan ◽  
...  

10559 Background: End-of-life (EOL) care in adolescents and young adults (AYA) with cancer is poorly characterized, though this group may be at risk of elevated rates of high-intensity (HI) care and consequently, increased EOL suffering. Few population-based studies exist, and are limited by incomplete clinical information. AYA care patterns can vary by locus of care (LOC – pediatric v. adult), but LOC disparities in AYA EOL care are unstudied. Methods: We conducted a retrospective decedent population-based cohort study of all Ontario AYA diagnosed between 15-21 years of age with 6 prevalent primary cancers between 1992-2012, who died ≤5 years from diagnosis. Chart-abstracted clinical data were linked to health services data. The primary composite outcome (HI-EOL care) included any of: intravenous chemotherapy ≤14 days from death; > 1 emergency department visit ≤30 days from death; or > 1 hospitalization or intensive care unit (ICU) admission ≤30 days from death. Secondary outcomes included measures of the most invasive (MI) EOL care: mechanical ventilation ≤14 days from death, and death in the ICU. Factors associated with HI-EOL were examined. Results: Of 483 patients, 292 (60.5%) experienced HI-EOL care, 98 (20.3%) were mechanically ventilated ≤14 days from death, and 110 (22.8%) died in the ICU. Patients with hematological malignancies (v. solid tumors) were at greatest risk of HI-EOL care (OR, 2.3; 95CI, 1.5-3.5, p < 0.01), mechanical ventilation (OR, 5.4; 95CI, 3.0-9.7, p < 0.01), and death in an ICU (OR, 4.9; 95CI, 2.8-8.5, p < 0.01). AYA who died in a pediatric center were substantially more likely to experience MI-EOL measures compared to those dying in adult centers (mechanical ventilation, OR 3.2, 95CI 1.3-7.6, p = 0.01). Assessment of interactions showed LOC-based disparities widening over the study period (ICU death in pediatric v. adult centres: early period OR 0.9, 95CI 0.3-2.9, p = 0.91; late period OR 3.3, 95CI 1.2-9.2, p = 0.02; interaction term p = 0.04). AYA living in rural areas were also at higher risk of experiencing mechanical ventilation (OR, 2.0; 95CI, 1.0-3.8, p = 0.04) and death in ICU (OR, 2.1; 95CI, 1.1-4.0, p = 0.02). Conclusions: AYA with cancer experience high rates of HI-EOL care, with patients in pediatric centers and those living in rural areas at highest risk of MI-EOL care. Our study is the first to identify LOC-based disparities in AYA EOL care. Future studies should explore mechanisms underlying these disparities, including potential differences in palliative care services.


2020 ◽  
Vol 9 (2) ◽  
pp. 157-165 ◽  
Author(s):  
Ursula M. Sansom-Daly ◽  
Claire E. Wakefield ◽  
Pandora Patterson ◽  
Richard J. Cohn ◽  
Abby R. Rosenberg ◽  
...  

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