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
Maria SercuPeter Pype

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.

References

Oct 8, 1982·Sociology of Health & Illness·A StraussC Wiener
Mar 15, 2003·Journal of Clinical Oncology : Official Journal of the American Society of Clinical Oncology·Craig C EarleSusan Block
May 15, 2003·JAMA : the Journal of the American Medical Association·June R LunneyJack M Guralnik
Jun 16, 2004·European Journal of Cancer Care·T van KleffensE Van Leeuwen
Oct 14, 2004·JAMA : the Journal of the American Medical Association·David E Weissman
Nov 2, 2006·International Journal of Palliative Nursing·Maureen GamblesJohn E Ellershaw
Feb 22, 2007·JAMA : the Journal of the American Medical Association·Paul K MaciejewskiHolly G Prigerson
Mar 9, 2007·Palliative Medicine·Merryn GottNeil Small
Mar 18, 2008·European Journal of Cancer : Official Journal for European Organization for Research and Treatment of Cancer (EORTC) [and] European Association for Cancer Research (EACR)·Irene J Higginson, Massimo Costantini
Aug 9, 2008·Journal of Clinical Oncology : Official Journal of the American Society of Clinical Oncology·Craig C EarleJohn Z Ayanian
Oct 22, 2008·Annals of Emergency Medicine·Alexander K SmithEllen P McCarthy
Apr 2, 2010·The New England Journal of Medicine·Thomas M GillHeather G Allore
Apr 14, 2010·Journal of the National Cancer Institute. Monographs·Paul K J Han, Daniel Rayson
Sep 18, 2010·BMJ : British Medical Journal·Kirsty Boyd, Scott A Murray
Feb 1, 2011·Journal of the American Geriatrics Society·Fliss E M MurtaghIrene J Higginson
Mar 16, 2011·Journal of Clinical Oncology : Official Journal of the American Society of Clinical Oncology·Thi H HoCraig C Earle
Jul 7, 2011·Advances in Neonatal Care : Official Journal of the National Association of Neonatal Nurses·Anita Catlin
Jul 9, 2011·Qualitative Health Research·Bridget Taylor, Hilde de Vocht
Oct 15, 2011·International Journal of Nursing Studies·Bernadette Dierckx de CasterléYvonne Denier
Apr 3, 2012·Critical Reviews in Oncology/hematology·Marija Trajkovic-VidakovicSaskia C C M Teunissen
Sep 1, 2012·Supportive Care in Cancer : Official Journal of the Multinational Association of Supportive Care in Cancer·David HuiEduardo Bruera
Nov 28, 2012·Clinics in Geriatric Medicine·Mark RosenbergSumi Misra
Jan 5, 2013·The Australasian Medical Journal·Christine ToyeMeg Hegarty
Jan 30, 2013·JAMA Internal Medicine·Jaclyn YoongJennifer S Temel
Feb 19, 2013·BMC Palliative Care·Barbara GomesIrene J Higginson
Mar 28, 2013·BMC Family Practice·Susanne J J ClaessenLuc Deliens
May 30, 2013·Current Opinion in Pulmonary Medicine·Jennifer Shin, Jennifer Temel
Jul 12, 2013·PloS One·Marjolein GyselsUNKNOWN Project PRISMA
Mar 20, 2014·BMJ Supportive & Palliative Care·Elizabeth Reed, Jessica Corner
May 21, 2014·Current Opinion in Oncology·Jan GaertnerB Alt-Epping
Apr 9, 2015·Qualitative Health Research·Louisa Polak, Judith Green
Nov 26, 2015·Nature Reviews. Clinical Oncology·David Hui, Eduardo Bruera
Jan 20, 2016·Journal of Geriatric Oncology·Shi-Yi WangCary P Gross
Jan 20, 2016·JAMA : the Journal of the American Medical Association·Justin E BekelmanUNKNOWN International Consortium for End-of-Life Research (ICELR)
Oct 18, 2016·Journal of Medical Radiation Sciences·Wsam A Ghandourh

❮ Previous
Next ❯

Citations

May 13, 2019·International Journal of Gynecological Cancer : Official Journal of the International Gynecological Cancer Society·Thanchanok SompratthanaRuangsak Lertkhachonsuk
Jun 18, 2021·Medical Anthropology·Sylvie FortinMichel Duval

❮ Previous
Next ❯

Software Mentioned

EoL
Qualitative Analysis Guide of ( QUAGOL )
DIPex

Related Concepts

Trending Feeds

COVID-19

Coronaviruses encompass a large family of viruses that cause the common cold as well as more serious diseases, such as the ongoing outbreak of coronavirus disease 2019 (COVID-19; formally known as 2019-nCoV). Coronaviruses can spread from animals to humans; symptoms include fever, cough, shortness of breath, and breathing difficulties; in more severe cases, infection can lead to death. This feed covers recent research on COVID-19.

Blastomycosis

Blastomycosis fungal infections spread through inhaling Blastomyces dermatitidis spores. Discover the latest research on blastomycosis fungal infections here.

Nuclear Pore Complex in ALS/FTD

Alterations in nucleocytoplasmic transport, controlled by the nuclear pore complex, may be involved in the pathomechanism underlying multiple neurodegenerative diseases including Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. Here is the latest research on the nuclear pore complex in ALS and FTD.

Applications of Molecular Barcoding

The concept of molecular barcoding is that each original DNA or RNA molecule is attached to a unique sequence barcode. Sequence reads having different barcodes represent different original molecules, while sequence reads having the same barcode are results of PCR duplication from one original molecule. Discover the latest research on molecular barcoding here.

Chronic Fatigue Syndrome

Chronic fatigue syndrome is a disease characterized by unexplained disabling fatigue; the pathology of which is incompletely understood. Discover the latest research on chronic fatigue syndrome here.

Evolution of Pluripotency

Pluripotency refers to the ability of a cell to develop into three primary germ cell layers of the embryo. This feed focuses on the mechanisms that underlie the evolution of pluripotency. Here is the latest research.

Position Effect Variegation

Position Effect Variagation occurs when a gene is inactivated due to its positioning near heterochromatic regions within a chromosome. Discover the latest research on Position Effect Variagation here.

STING Receptor Agonists

Stimulator of IFN genes (STING) are a group of transmembrane proteins that are involved in the induction of type I interferon that is important in the innate immune response. The stimulation of STING has been an active area of research in the treatment of cancer and infectious diseases. Here is the latest research on STING receptor agonists.

Microbicide

Microbicides are products that can be applied to vaginal or rectal mucosal surfaces with the goal of preventing, or at least significantly reducing, the transmission of sexually transmitted infections. Here is the latest research on microbicides.

Related Papers

The Medical Journal of Australia
B S Cole
The Journal of the South Carolina Medical Association
Charles S Bryan
Canadian Medical Association Journal
C Saunders
International Journal of Psychosomatics : Official Publication of the International Psychosomatics Institute
S R Engelman
© 2022 Meta ULC. All rights reserved