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-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
Vyšlo v časopise:
Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study. PLoS Med 9(2): e32767. doi:10.1371/journal.pmed.1001173
Kategorie:
Research Article
prolekare.web.journal.doi_sk:
https://doi.org/10.1371/journal.pmed.1001173
Souhrn
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
Zdroje
1. HarlosM 2011 The terminal phase. HanksGChernyNIChristakisNAFallonMKaasaS Oxford textbook of palliative medicine, 4th edition Oxford Oxford University Press 1549 1559
2. HanksGChernyNIPortenoyRKKaasaSFallonM 2011 Introduction to the fourth edition: facing the challenges of continuity and change. HanksGChernyNIChristakisNAFallonMKaasaS Oxford textbook of palliative medicine, 4th edition Oxford Oxford University Press 1 5
3. EllershawJWilkinsonS 2011 Care of the dying: a pathway to excellence Oxford Oxford University Press 288
4. SaundersCM 1978 The philosophy of terminal care. SaundersCM The management of terminal disease London Edward Arnold 193 202
5. ClarkD 1999 ‘Total pain’, disciplinary power and the body in the work of Cicely Saunders, 1958–1967. Soc Sci Med 49 727 736
6. World Health Organization 2002 WHO definition of palliative care. Available: http://www.who.int/cancer/palliative/definition/en/. Accessed 26 August 2011
7. HanksGChernyNIChristakisNAFallonMKaasaS 2011 Oxford textbook of palliative medicine, 4th edition Oxford Oxford University Press 1,704
8. WalshTDCaraceniATFainsingerRFoleyKMGlareP 2009 Palliative medicine Philadelphia Saunders Elsevier 1,520
9. BrueraEHigginsonIJRipamontiCVon GuntenCF 2009 Textbook of palliative medicine London Hodder Arnold 1,024
10. National Institute for Clinical Excellence 2004 Improving supportive and palliative care for adults with cancer: the manual. Available: http://www.nice.org.uk/nicemedia/live/10893/28816/28816.pdf. Accessed 10 October 2011
11. National Consensus Project for Quality Palliative Care 2009 Clinical practice guidelines for quality palliative care, 2nd edition. Available: http://www.nationalconsensusproject.org/guideline.pdf. Accessed 11 October 2011
12. FerrellBViraniRGrantMJuarezG 2000 Analysis of palliative care content in nursing textbooks. J Palliat Care 16 39 47
13. FerrellBRViraniRGrantM 1999 Analysis of symptom assessment and management content in nursing textbooks. J Palliat Med 2 161 172
14. RabowMWHardieGEFairJMMcPheeSJ 2000 End-of-life care content in 50 textbooks from multiple specialties. JAMA 283 771 778
15. WuHYMalikFAHigginsonIJ 2006 End of life content in geriatric textbooks: what is the current situation? BMC Palliat Care 5 5
16. TishelmanCLovgrenMBrobergerEHambergKSprangersMA 2010 Are the most distressing concerns of patients with inoperable lung cancer adequately assessed? A mixed-methods analysis. J Clin Oncol 28 1942 1949
17. BernardHR 2002 Research methods in anthropology. Qualitative and quantitative approaches New York Altamira Press 753
18. WellerSDRomneyAK 1988 Systematic data collection Newbury Park (California) Sage Publication 96
19. GoffmanE 1959 The presentation of self in everyday life London Penguin 259
20. IslamGZyphurMJ 2009 Rituals in organizations: a review and expansion of current theory. Group Organ Manag 34 114 139
21. RasmussenBHEdvardssonD 2007 The influence of environment in palliative care: supporting or hindering experiences of ‘at-homeness’. Contemp Nurse 27 119 131
22. RigbyJPayneSFroggattK 2010 Review: what evidence is there about the specific environmental needs of older people who are near the end of life and are cared for in hospices or similar institutions? A literature review. Palliat Med 24 268 285
23. MeadNBowerP 2000 Patient-centredness: a conceptual framework and review of the empirical literature. Soc Sci Med 51 1087 1110
24. EdvardssonDWinbladBSandmanPO 2008 Person-centred care of people with severe Alzheimer's disease: current status and ways forward. Lancet Neurol 7 362 367
25. SandelowskiM 1999 Troubling distinctions: a semiotics of the nursing/technology relationship. Nurs Inq 6 198 207
26. ArandaSBrownR 2006 Nurses must be clever to care. NelsonSGordonS The complexities of care: nursing reconsidered Ithaca ILR Press 122 142
27. TishelmanCBernhardsonBMBlombergKBorjesonSFranklinL 2004 Complexity in caring for patients with advanced cancer. J Adv Nurs 45 420 429
28. MüllerMCox DzurecL 1993 The power of the name. ANS Adv Nurs Sci 15 15 22
29. WilliamsSJ 2003 Medicine and the body London Sage Publications 242
30. GordonS 2006 The new Cartesianism: dividing mind and body and thus disembodying care. NelsonSGordonS The complexity of care: nursing reconsidered Ithaca ILR Press 104 121
31. CornerJDunlopR 1997 New approaches to care. ClarkDHockleyJAhmedzaiS New themes in palliative care Buckingham (United Kingdom) Open University Press 287 302
32. WallerSFinnH 2011 Environments for care at end of life London The King's Fund Available: http://www.kingsfund.org.uk/publications/ehe_care_environment.html. Accessed 10 October 2011
Štítky
Interné lekárstvoČlánok vyšiel v časopise
PLOS Medicine
2012 Číslo 2
- Statinová intolerance
- Očkování proti virové hemoragické horečce Ebola experimentální vakcínou rVSVDG-ZEBOV-GP
- Parazitičtí červi v terapii Crohnovy choroby a dalších zánětlivých autoimunitních onemocnění
- Metamizol v liečbe pooperačnej bolesti u detí do 6 rokov veku
- Co dělat při intoleranci statinů?
Najčítanejšie v tomto čísle
- The Activities of Current Antimalarial Drugs on the Life Cycle Stages of : A Comparative Study with Human and Rodent Parasites
- Association between Clean Delivery Kit Use, Clean Delivery Practices, and Neonatal Survival: Pooled Analysis of Data from Three Sites in South Asia
- Prevalence, Distribution, and Impact of Mild Cognitive Impairment in Latin America, China, and India: A 10/66 Population-Based Study
- Characterisation of Hospital Ward–Based Transmission Using Extensive Epidemiological Data and Molecular Typing