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Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study
BACKGROUND: In late-stage palliative cancer care, relief of distress and optimized well-being become primary treatment goals. Great strides have been made in improving and researching pharmacological treatments for symptom relief; however, little systematic knowledge exists about the range of non-ph...
Autores principales: | , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Public Library of Science
2012
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3279347/ https://www.ncbi.nlm.nih.gov/pubmed/22347815 http://dx.doi.org/10.1371/journal.pmed.1001173 |
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author | Lindqvist, Olav Tishelman, Carol Hagelin, Carina Lundh Clark, Jean B. Daud, Maria L. Dickman, Andrew Benedetti, Franzisca Domeisen Galushko, Maren Lunder, Urska Lundquist, Gunilla Miccinesi, Guido Sauter, Sylvia B. Fürst, Carl Johan Rasmussen, Birgit H. |
author_facet | Lindqvist, Olav Tishelman, Carol Hagelin, Carina Lundh Clark, Jean B. Daud, Maria L. Dickman, Andrew Benedetti, Franzisca Domeisen Galushko, Maren Lunder, Urska Lundquist, Gunilla Miccinesi, Guido Sauter, Sylvia B. Fürst, Carl Johan Rasmussen, Birgit H. |
author_sort | Lindqvist, Olav |
collection | PubMed |
description | BACKGROUND: In late-stage palliative cancer care, relief of distress and optimized well-being become primary treatment goals. Great strides have been made in improving and researching pharmacological treatments for symptom relief; however, little systematic knowledge exists about the range of non-pharmacological caregiving activities (NPCAs) staff use in the last days of a patient's life. METHODS AND FINDINGS: Within a European Commission Seventh Framework Programme project to optimize research and clinical care in the last days of life for patients with cancer, OPCARE9, we used a free-listing technique to identify the variety of NPCAs performed in the last days of life. Palliative care staff at 16 units in nine countries listed in detail NPCAs they performed over several weeks. In total, 914 statements were analyzed in relation to (a) the character of the statement and (b) the recipient of the NPCA. A substantial portion of NPCAs addressed bodily care and contact with patients and family members, with refraining from bodily care also described as a purposeful caregiving activity. Several forms for communication were described; information and advice was at one end of a continuum, and communicating through nonverbal presence and bodily contact at the other. Rituals surrounding death and dying included not only spiritual/religious issues, but also more subtle existential, legal, and professional rituals. An unexpected and hitherto under-researched area of focus was on creating an aesthetic, safe, and pleasing environment, both at home and in institutional care settings. CONCLUSIONS: Based on these data, we argue that palliative care in the last days of life is multifaceted, with physical, psychological, social, spiritual, and existential care interwoven in caregiving activities. Providing for fundamental human needs close to death appears complex and sophisticated; it is necessary to better distinguish nuances in such caregiving to acknowledge, respect, and further develop end-of-life care. Please see later in the article for the Editors' Summary |
format | Online Article Text |
id | pubmed-3279347 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2012 |
publisher | Public Library of Science |
record_format | MEDLINE/PubMed |
spelling | pubmed-32793472012-02-17 Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study Lindqvist, Olav Tishelman, Carol Hagelin, Carina Lundh Clark, Jean B. Daud, Maria L. Dickman, Andrew Benedetti, Franzisca Domeisen Galushko, Maren Lunder, Urska Lundquist, Gunilla Miccinesi, Guido Sauter, Sylvia B. Fürst, Carl Johan Rasmussen, Birgit H. PLoS Med Research Article BACKGROUND: In late-stage palliative cancer care, relief of distress and optimized well-being become primary treatment goals. Great strides have been made in improving and researching pharmacological treatments for symptom relief; however, little systematic knowledge exists about the range of non-pharmacological caregiving activities (NPCAs) staff use in the last days of a patient's life. METHODS AND FINDINGS: Within a European Commission Seventh Framework Programme project to optimize research and clinical care in the last days of life for patients with cancer, OPCARE9, we used a free-listing technique to identify the variety of NPCAs performed in the last days of life. Palliative care staff at 16 units in nine countries listed in detail NPCAs they performed over several weeks. In total, 914 statements were analyzed in relation to (a) the character of the statement and (b) the recipient of the NPCA. A substantial portion of NPCAs addressed bodily care and contact with patients and family members, with refraining from bodily care also described as a purposeful caregiving activity. Several forms for communication were described; information and advice was at one end of a continuum, and communicating through nonverbal presence and bodily contact at the other. Rituals surrounding death and dying included not only spiritual/religious issues, but also more subtle existential, legal, and professional rituals. An unexpected and hitherto under-researched area of focus was on creating an aesthetic, safe, and pleasing environment, both at home and in institutional care settings. CONCLUSIONS: Based on these data, we argue that palliative care in the last days of life is multifaceted, with physical, psychological, social, spiritual, and existential care interwoven in caregiving activities. Providing for fundamental human needs close to death appears complex and sophisticated; it is necessary to better distinguish nuances in such caregiving to acknowledge, respect, and further develop end-of-life care. Please see later in the article for the Editors' Summary Public Library of Science 2012-02-14 /pmc/articles/PMC3279347/ /pubmed/22347815 http://dx.doi.org/10.1371/journal.pmed.1001173 Text en Lindqvist et al. http://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are properly credited. |
spellingShingle | Research Article Lindqvist, Olav Tishelman, Carol Hagelin, Carina Lundh Clark, Jean B. Daud, Maria L. Dickman, Andrew Benedetti, Franzisca Domeisen Galushko, Maren Lunder, Urska Lundquist, Gunilla Miccinesi, Guido Sauter, Sylvia B. Fürst, Carl Johan Rasmussen, Birgit H. Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study |
title | Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study |
title_full | Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study |
title_fullStr | Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study |
title_full_unstemmed | Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study |
title_short | Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study |
title_sort | complexity in non-pharmacological caregiving activities at the end of life: an international qualitative study |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3279347/ https://www.ncbi.nlm.nih.gov/pubmed/22347815 http://dx.doi.org/10.1371/journal.pmed.1001173 |
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