The End-of-Life Phase of High-Grade Glioma Patients: Dying With Dignity?

被引:56
作者
Sizoo, Eefje M. [1 ]
Taphoorn, Martin J. B. [1 ,5 ]
Uitdehaag, Bernard [1 ,2 ]
Heimans, Jan J. [1 ]
Deliens, Luc [3 ,4 ,6 ,7 ]
Reijneveld, Jaap C. [1 ,8 ]
Pasman, H. Roeline W. [3 ,4 ]
机构
[1] Vrije Univ Amsterdam, Dept Neurol, Med Ctr, NL-1007 MB Amsterdam, Netherlands
[2] Vrije Univ Amsterdam, Dept Epidemiol & Biostat, Med Ctr, NL-1007 MB Amsterdam, Netherlands
[3] Vrije Univ Amsterdam, Dept Publ & Occupat Hlth, Med Ctr, NL-1007 MB Amsterdam, Netherlands
[4] Vrije Univ Amsterdam, EMGO Inst Hlth & Care Res, Med Ctr, NL-1007 MB Amsterdam, Netherlands
[5] Med Ctr Haaglanden, Dept Neurol, The Hague, Netherlands
[6] Univ Ghent, End Of Life Care Res Grp, Brussels, Belgium
[7] Vrije Univ Brussel, Brussels, Belgium
[8] Univ Amsterdam, Acad Med Ctr, Dept Neurol, NL-1105 AZ Amsterdam, Netherlands
关键词
High grade glioma; Dignity; End of life; Quality of life; Quality of care; DECISION-MAKING; PALLIATIVE CARE; TERMINALLY ILL; BRAIN-TUMORS; DEATH; COMMUNICATION; FACILITATORS; ASSOCIATIONS; PREFERENCES; DISCUSSIONS;
D O I
10.1634/theoncologist.2012-0247
中图分类号
R73 [肿瘤学];
学科分类号
100214 ;
摘要
Background. In the end-of-life (EOL) phase, high-grade glioma (HGG) patients have a high symptom burden and often lose independence because of physical and cognitive dysfunction. This might affect the patient's personal dignity. We aimed to (a) assess the proportion of HGG patients dying with dignity as perceived by their relatives and (b) identify disease and care factors correlated with dying with dignity in HGG patients. Methods. We approached relatives of a cohort of 155 deceased HGG patients for the study. Participants completed a questionnaire concerning the EOL phase of the patient, covering several subthemes: (a) symptoms and signs, (b) healthrelated quality of life, (c) decision making, (d) place and quality of EOL care, and (e) dying with dignity. Results. Relatives of 81 patients participated and 75% indicated that the patient died with dignity. These patients had fewer communication deficits, experienced fewer transitions between health care settings in the EOL phase, and more frequently died at their preferred place of death. Relatives were more satisfied with the physician providing EOL care and reported that the physician adequately explained treatment options. Multivariate analysis identified satisfaction with the physician, the ability to communicate, and the absence of transitions between settings as most predictive of a dignified death. Conclusions. Physicians caring for HGG patients in the EOL phase should timely focus on explaining possible treatment options, because patients experience communication deficits toward death. Physicians should strive to allow patients to die at their preferred place and avoid transitions during the last month of life. The Oncologist 2013; 18: 198-203
引用
收藏
页码:198 / 203
页数:6
相关论文
共 33 条
[1]   THE EUROPEAN-ORGANIZATION-FOR-RESEARCH-AND-TREATMENT-OF-CANCER QLQ-C30 - A QUALITY-OF-LIFE INSTRUMENT FOR USE IN INTERNATIONAL CLINICAL-TRIALS IN ONCOLOGY [J].
AARONSON, NK ;
AHMEDZAI, S ;
BERGMAN, B ;
BULLINGER, M ;
CULL, A ;
DUEZ, NJ ;
FILIBERTI, A ;
FLECHTNER, H ;
FLEISHMAN, SB ;
DEHAES, JCJM ;
KAASA, S ;
KLEE, M ;
OSOBA, D ;
RAZAVI, D ;
ROFE, PB ;
SCHRAUB, S ;
SNEEUW, K ;
SULLIVAN, M ;
TAKEDA, F .
JOURNAL OF THE NATIONAL CANCER INSTITUTE, 1993, 85 (05) :365-376
[2]   Analysis of the construct of dignity and content validity of the patient dignity inventory [J].
Albers, Gwenda ;
Pasman, H. Roeline W. ;
Rurup, Mette L. ;
de Vet, Henrica C. W. ;
Onwuteaka-Philipsen, Bregje D. .
HEALTH AND QUALITY OF LIFE OUTCOMES, 2011, 9
[3]   Content and Spiritual Items of Quality-of-Life Instruments Appropriate for Use in Palliative Care: A Review [J].
Albers, Gwenda ;
Echteld, Michael A. ;
de Vet, Henrica C. W. ;
Onwuteaka-Philipsen, Bregje D. ;
van der Linden, Mecheline H. M. ;
Deliens, Luc .
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 2010, 40 (02) :290-300
[4]   Primary brain tumours in adults [J].
Behin, A ;
Hoang-Xuan, K ;
Carpentier, AF ;
Delattre, JY .
LANCET, 2003, 361 (9354) :323-331
[5]   Dying, dignity, and new horizons in palliative end-of-life care [J].
Chochinov, HM .
CA-A CANCER JOURNAL FOR CLINICIANS, 2006, 56 (02) :84-103
[6]   Dignity in the terminally ill: a cross-sectional, cohort study [J].
Chochinov, HM ;
Hack, T ;
Hassard, T ;
Kristjanson, LJ ;
McClement, S ;
Harlos, M .
LANCET, 2002, 360 (9350) :2026-2030
[7]   Dignity in the terminally ill: a developing empirical model [J].
Chochinov, HM ;
Hack, T ;
McClement, S ;
Kristjanson, L ;
Harlos, M .
SOCIAL SCIENCE & MEDICINE, 2002, 54 (03) :433-443
[8]   Looking back from death: The value of retrospective studies of end-of-life care [J].
Earle, CC ;
Ayanian, JZ .
JOURNAL OF CLINICAL ONCOLOGY, 2006, 24 (06) :838-840
[9]   Palliative care of patients with a primary malignant brain tumour: case review of service use and support provided [J].
Faithfull, S ;
Cook, K ;
Lucas, C .
PALLIATIVE MEDICINE, 2005, 19 (07) :545-550
[10]  
Fayers P., 2001, EORTC QLQ C30 SCORIN, V3rd ed.