Cargando…
The broad spectrum of unbearable suffering in end-of-life cancer studied in dutch primary care
BACKGROUND: Unbearable suffering most frequently is reported in end-of-life cancer patients in primary care. However, research seldom addresses unbearable suffering. The aim of this study was to comprehensively investigate the various aspects of unbearable suffering in end-of-life cancer patients ca...
Autores principales: | , , , |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2012
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3453495/ https://www.ncbi.nlm.nih.gov/pubmed/22853448 http://dx.doi.org/10.1186/1472-684X-11-12 |
_version_ | 1782244469302624256 |
---|---|
author | Ruijs, Cees DM Kerkhof, Ad JFM van der Wal, Gerrit Onwuteaka-Philipsen, Bregje D |
author_facet | Ruijs, Cees DM Kerkhof, Ad JFM van der Wal, Gerrit Onwuteaka-Philipsen, Bregje D |
author_sort | Ruijs, Cees DM |
collection | PubMed |
description | BACKGROUND: Unbearable suffering most frequently is reported in end-of-life cancer patients in primary care. However, research seldom addresses unbearable suffering. The aim of this study was to comprehensively investigate the various aspects of unbearable suffering in end-of-life cancer patients cared for in primary care. METHODS: Forty four general practitioners recruited end-of-life cancer patients with an estimated life expectancy of half a year or shorter. The inclusion period was three years, follow-up lasted one additional year. Practices were monitored bimonthly to identify new cases. Unbearable aspects in five domains and overall unbearable suffering were quantitatively assessed (5-point scale) through patient interviews every two months with a comprehensive instrument. Scores of 4 (serious) or 5 (hardly can be worse) were defined unbearable. The last interviews before death were analyzed. Sources providing strength to bear suffering were identified through additional open-ended questions. RESULTS: Seventy six out of 148 patients (51%) requested to participate consented; the attrition rate was 8%, while 8% were alive at the end of follow-up. Sixty four patients were followed up until death; in 60 patients interviews were complete. Overall unbearable suffering occurred in 28%. A mean of 18 unbearable aspects was present in patients with serious (score 4) overall unbearable suffering. Overall, half of the unbearable aspects involved the domain of traditional medical symptoms. The most frequent unbearable aspects were weakness, general discomfort, tiredness, pain, loss of appetite and not sleeping well (25%-57%). The other half of the unbearable aspects involved the domains of function, personhood, environment, and nature and prognosis of disease. The most frequent unbearable aspects were impaired activities, feeling dependent, help needed with housekeeping, not being able to do important things, trouble accepting the situation, being bedridden and loss of control (27%-55%). The combination of love and support was the most frequent source (67%) providing strength to bear suffering. CONCLUSIONS: Overall unbearable suffering occurred in one in every four end-of-life cancer patients. Half of the unbearable aspects involved medical symptoms, the other half concerned psychological, social and existential dimensions. Physicians need to comprehensively assess suffering and provide psychosocial interventions alongside physical symptom management. |
format | Online Article Text |
id | pubmed-3453495 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2012 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-34534952012-09-25 The broad spectrum of unbearable suffering in end-of-life cancer studied in dutch primary care Ruijs, Cees DM Kerkhof, Ad JFM van der Wal, Gerrit Onwuteaka-Philipsen, Bregje D BMC Palliat Care Research Article BACKGROUND: Unbearable suffering most frequently is reported in end-of-life cancer patients in primary care. However, research seldom addresses unbearable suffering. The aim of this study was to comprehensively investigate the various aspects of unbearable suffering in end-of-life cancer patients cared for in primary care. METHODS: Forty four general practitioners recruited end-of-life cancer patients with an estimated life expectancy of half a year or shorter. The inclusion period was three years, follow-up lasted one additional year. Practices were monitored bimonthly to identify new cases. Unbearable aspects in five domains and overall unbearable suffering were quantitatively assessed (5-point scale) through patient interviews every two months with a comprehensive instrument. Scores of 4 (serious) or 5 (hardly can be worse) were defined unbearable. The last interviews before death were analyzed. Sources providing strength to bear suffering were identified through additional open-ended questions. RESULTS: Seventy six out of 148 patients (51%) requested to participate consented; the attrition rate was 8%, while 8% were alive at the end of follow-up. Sixty four patients were followed up until death; in 60 patients interviews were complete. Overall unbearable suffering occurred in 28%. A mean of 18 unbearable aspects was present in patients with serious (score 4) overall unbearable suffering. Overall, half of the unbearable aspects involved the domain of traditional medical symptoms. The most frequent unbearable aspects were weakness, general discomfort, tiredness, pain, loss of appetite and not sleeping well (25%-57%). The other half of the unbearable aspects involved the domains of function, personhood, environment, and nature and prognosis of disease. The most frequent unbearable aspects were impaired activities, feeling dependent, help needed with housekeeping, not being able to do important things, trouble accepting the situation, being bedridden and loss of control (27%-55%). The combination of love and support was the most frequent source (67%) providing strength to bear suffering. CONCLUSIONS: Overall unbearable suffering occurred in one in every four end-of-life cancer patients. Half of the unbearable aspects involved medical symptoms, the other half concerned psychological, social and existential dimensions. Physicians need to comprehensively assess suffering and provide psychosocial interventions alongside physical symptom management. BioMed Central 2012-08-01 /pmc/articles/PMC3453495/ /pubmed/22853448 http://dx.doi.org/10.1186/1472-684X-11-12 Text en Copyright ©2012 Ruijs et al.; licensee BioMed Central Ltd. http://creativecommons.org/licenses/by/2.0 This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. |
spellingShingle | Research Article Ruijs, Cees DM Kerkhof, Ad JFM van der Wal, Gerrit Onwuteaka-Philipsen, Bregje D The broad spectrum of unbearable suffering in end-of-life cancer studied in dutch primary care |
title | The broad spectrum of unbearable suffering in end-of-life cancer studied in dutch primary care |
title_full | The broad spectrum of unbearable suffering in end-of-life cancer studied in dutch primary care |
title_fullStr | The broad spectrum of unbearable suffering in end-of-life cancer studied in dutch primary care |
title_full_unstemmed | The broad spectrum of unbearable suffering in end-of-life cancer studied in dutch primary care |
title_short | The broad spectrum of unbearable suffering in end-of-life cancer studied in dutch primary care |
title_sort | broad spectrum of unbearable suffering in end-of-life cancer studied in dutch primary care |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3453495/ https://www.ncbi.nlm.nih.gov/pubmed/22853448 http://dx.doi.org/10.1186/1472-684X-11-12 |
work_keys_str_mv | AT ruijsceesdm thebroadspectrumofunbearablesufferinginendoflifecancerstudiedindutchprimarycare AT kerkhofadjfm thebroadspectrumofunbearablesufferinginendoflifecancerstudiedindutchprimarycare AT vanderwalgerrit thebroadspectrumofunbearablesufferinginendoflifecancerstudiedindutchprimarycare AT onwuteakaphilipsenbregjed thebroadspectrumofunbearablesufferinginendoflifecancerstudiedindutchprimarycare AT ruijsceesdm broadspectrumofunbearablesufferinginendoflifecancerstudiedindutchprimarycare AT kerkhofadjfm broadspectrumofunbearablesufferinginendoflifecancerstudiedindutchprimarycare AT vanderwalgerrit broadspectrumofunbearablesufferinginendoflifecancerstudiedindutchprimarycare AT onwuteakaphilipsenbregjed broadspectrumofunbearablesufferinginendoflifecancerstudiedindutchprimarycare |