Advanced search
1 file | 848.13 KB

Rethinking end-of-life care and palliative care : learning from the illness trajectories and lived experiences of terminally ill patients and their family carers

Marij Sercu (UGent) , Ilse Beyens, Marc Cosyns (UGent) , Fien Mertens (UGent) , Myriam Deveugele (UGent) and Peter Pype (UGent)
(2018) QUALITATIVE HEALTH RESEARCH. 28(14). p.2220-2238
Author
Organization
Abstract
Lynn conceptualized end-of-life (EoL) care for patients with advanced chronic-progressive illnesses as a combination of life-preserving/palliative care, the palliative aspect gradually becoming the main focus as death approaches. We checked this concept by exploring the advanced-terminal illness trajectories of 50 patients. Strategies heralding active therapy exhaustion were the catalyst for a participant's awareness of terminality, but were not a decisive factor in the divergent EoL care pathways we detected. The terms life-preserving and palliative do not adequately capture EoL care pathways due to their conceptual ambiguity. Conversely, the concept of EoL care encompassing three palliative care modalities (life-prolonging palliative therapy, restorative palliative care, and symptom-oriented [only] palliative care), each harboring a different blend of life-preserving and symptom-comforting aspects, proved adequate. These modalities could run serially, oscillatorily, or parallelly, explaining the divergent EoL care pathways. We suggest an adjustment of the model of Lynn and reconsider the traditional palliative care concept.
Keywords
Qualitative analysis, interviews, Western Europe, chronic-progressive disease, advanced illness, illness trajectories, palliative care, medical care, life-preserving care, end-of-life care, CANCER CARE, FUNCTIONAL DECLINE, HEALTH, AGGRESSIVENESS, DEFINITIONS, DISEASE, QUALITY, TRENDS

Downloads

  • (...).pdf
    • full text
    • |
    • UGent only
    • |
    • PDF
    • |
    • 848.13 KB

Citation

Please use this url to cite or link to this publication:

Chicago
Sercu, Marij, Ilse Beyens, Marc Cosyns, Fien Mertens, Myriam Deveugele, and Peter Pype. 2018. “Rethinking End-of-life Care and Palliative Care : Learning from the Illness Trajectories and Lived Experiences of Terminally Ill Patients and Their Family Carers.” Qualitative Health Research 28 (14): 2220–2238.
APA
Sercu, Marij, Beyens, I., Cosyns, M., Mertens, F., Deveugele, M., & Pype, P. (2018). Rethinking end-of-life care and palliative care : learning from the illness trajectories and lived experiences of terminally ill patients and their family carers. QUALITATIVE HEALTH RESEARCH, 28(14), 2220–2238.
Vancouver
1.
Sercu M, Beyens I, Cosyns M, Mertens F, Deveugele M, Pype P. Rethinking end-of-life care and palliative care : learning from the illness trajectories and lived experiences of terminally ill patients and their family carers. QUALITATIVE HEALTH RESEARCH. 2018;28(14):2220–38.
MLA
Sercu, Marij et al. “Rethinking End-of-life Care and Palliative Care : Learning from the Illness Trajectories and Lived Experiences of Terminally Ill Patients and Their Family Carers.” QUALITATIVE HEALTH RESEARCH 28.14 (2018): 2220–2238. Print.
@article{8575902,
  abstract     = {Lynn conceptualized end-of-life (EoL) care for patients with advanced chronic-progressive illnesses as a combination of life-preserving/palliative care, the palliative aspect gradually becoming the main focus as death approaches. We checked this concept by exploring the advanced-terminal illness trajectories of 50 patients. Strategies heralding active therapy exhaustion were the catalyst for a participant's awareness of terminality, but were not a decisive factor in the divergent EoL care pathways we detected. The terms life-preserving and palliative do not adequately capture EoL care pathways due to their conceptual ambiguity. Conversely, the concept of EoL care encompassing three palliative care modalities (life-prolonging palliative therapy, restorative palliative care, and symptom-oriented [only] palliative care), each harboring a different blend of life-preserving and symptom-comforting aspects, proved adequate. These modalities could run serially, oscillatorily, or parallelly, explaining the divergent EoL care pathways. We suggest an adjustment of the model of Lynn and reconsider the traditional palliative care concept.},
  author       = {Sercu, Marij and Beyens, Ilse and Cosyns, Marc and Mertens, Fien and Deveugele, Myriam and Pype, Peter},
  issn         = {1049-7323},
  journal      = {QUALITATIVE HEALTH RESEARCH},
  language     = {eng},
  number       = {14},
  pages        = {2220--2238},
  title        = {Rethinking end-of-life care and palliative care : learning from the illness trajectories and lived experiences of terminally ill patients and their family carers},
  url          = {http://dx.doi.org/10.1177/1049732318796477},
  volume       = {28},
  year         = {2018},
}

Altmetric
View in Altmetric
Web of Science
Times cited: