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A painful experience of limited understanding: healthcare professionals' experiences with palliative care of people with severe dementia in Norwegian nursing homes.
BMC Palliat Care. 2018 Feb 13; 17(1):25.BP

Abstract

BACKGROUND

People dying with dementia have significant healthcare needs, and palliative care, with its focus on comfort and quality of life, should be made available to these patients. The aim of this study was to explore and increase knowledge of healthcare professionals' experiences with palliative care to people with severe dementia in nursing homes.

METHODS

To describe the phenomenon under investigation, we used a phenomenological research approach grounded in the philosophy of Husserl. Data were collected using in-depth interviews with 20 healthcare professionals from four Norwegian nursing homes.

RESULTS

The general meaning structure of the healthcare professionals' experiences with providing palliative care to people with severe dementia is painfulness, due to their limited understanding of patients' individual modes of expression. The painfulness is illustrated by the following themes: challenges related to "reading" the patients' suffering, coming up short despite occasional success, handing the patients over to strangers, and disagreeing on the patients' best interests. The healthcare professionals struggled to understand patients by "reading" their suffering. Occasionally, they succeeded and were able to calm the patients, but they often had the feeling of coming up short in situations related to pain relief and coping with behavioural symptoms, such as aggression and rejection of care. They also found it painful when the weakest patients were moved from the sheltered unit to a somatic long-term unit and were handed over to strangers who did not know the patients' ways of expression. Although the healthcare professionals emphasized the importance of good collaboration with the patients' relatives to ensure the best possible palliative care, they frequently found themselves in difficult situations when they disagreed with the family on the patients' best interests.

CONCLUSIONS

We found healthcare professionals' experiences of providing palliative care to people with severe dementia to be painful. To be able to understand the patients better, long-term familiarity and knowledge of how to "read" and observe patients with severe dementia are necessary. Openness in cooperation with the patients' relatives and with the professional team may increase healthcare professionals' understanding of the patients' situations and hence improve the quality of care.

Authors+Show Affiliations

Department for Health Sciences in Aalesund, Faculty of Medicine and Health Sciences, Norwegian University of Science and Technology, Serviceboks 17, 6025, Aalesund, NO, Norway. mmi@ntnu.no.Department for Health Sciences in Aalesund, Faculty of Medicine and Health Sciences, Norwegian University of Science and Technology, Serviceboks 17, 6025, Aalesund, NO, Norway.University of Bergen, Global Public Health and Primary Care, Box 7804, 5020, Bergen, Norway. Molde University College, Faculty of Health Sciences and Social Care, Box 2110, 6402, Molde, Norway.Molde University College, Faculty of Health Sciences and Social Care, Box 2110, 6402, Molde, Norway.

Pub Type(s)

Journal Article

Language

eng

PubMed ID

29433497

Citation

Midtbust, May Helen, et al. "A Painful Experience of Limited Understanding: Healthcare Professionals' Experiences With Palliative Care of People With Severe Dementia in Norwegian Nursing Homes." BMC Palliative Care, vol. 17, no. 1, 2018, p. 25.
Midtbust MH, Alnes RE, Gjengedal E, et al. A painful experience of limited understanding: healthcare professionals' experiences with palliative care of people with severe dementia in Norwegian nursing homes. BMC Palliat Care. 2018;17(1):25.
Midtbust, M. H., Alnes, R. E., Gjengedal, E., & Lykkeslet, E. (2018). A painful experience of limited understanding: healthcare professionals' experiences with palliative care of people with severe dementia in Norwegian nursing homes. BMC Palliative Care, 17(1), 25. https://doi.org/10.1186/s12904-018-0282-8
Midtbust MH, et al. A Painful Experience of Limited Understanding: Healthcare Professionals' Experiences With Palliative Care of People With Severe Dementia in Norwegian Nursing Homes. BMC Palliat Care. 2018 Feb 13;17(1):25. PubMed PMID: 29433497.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - A painful experience of limited understanding: healthcare professionals' experiences with palliative care of people with severe dementia in Norwegian nursing homes. AU - Midtbust,May Helen, AU - Alnes,Rigmor Einang, AU - Gjengedal,Eva, AU - Lykkeslet,Else, Y1 - 2018/02/13/ PY - 2017/11/16/received PY - 2018/02/06/accepted PY - 2018/2/14/entrez PY - 2018/2/13/pubmed PY - 2018/9/28/medline KW - Dementia KW - Nursing homes KW - Palliative care KW - Phenomenology KW - Qualitative methods SP - 25 EP - 25 JF - BMC palliative care JO - BMC Palliat Care VL - 17 IS - 1 N2 - BACKGROUND: People dying with dementia have significant healthcare needs, and palliative care, with its focus on comfort and quality of life, should be made available to these patients. The aim of this study was to explore and increase knowledge of healthcare professionals' experiences with palliative care to people with severe dementia in nursing homes. METHODS: To describe the phenomenon under investigation, we used a phenomenological research approach grounded in the philosophy of Husserl. Data were collected using in-depth interviews with 20 healthcare professionals from four Norwegian nursing homes. RESULTS: The general meaning structure of the healthcare professionals' experiences with providing palliative care to people with severe dementia is painfulness, due to their limited understanding of patients' individual modes of expression. The painfulness is illustrated by the following themes: challenges related to "reading" the patients' suffering, coming up short despite occasional success, handing the patients over to strangers, and disagreeing on the patients' best interests. The healthcare professionals struggled to understand patients by "reading" their suffering. Occasionally, they succeeded and were able to calm the patients, but they often had the feeling of coming up short in situations related to pain relief and coping with behavioural symptoms, such as aggression and rejection of care. They also found it painful when the weakest patients were moved from the sheltered unit to a somatic long-term unit and were handed over to strangers who did not know the patients' ways of expression. Although the healthcare professionals emphasized the importance of good collaboration with the patients' relatives to ensure the best possible palliative care, they frequently found themselves in difficult situations when they disagreed with the family on the patients' best interests. CONCLUSIONS: We found healthcare professionals' experiences of providing palliative care to people with severe dementia to be painful. To be able to understand the patients better, long-term familiarity and knowledge of how to "read" and observe patients with severe dementia are necessary. Openness in cooperation with the patients' relatives and with the professional team may increase healthcare professionals' understanding of the patients' situations and hence improve the quality of care. SN - 1472-684X UR - https://www.unboundmedicine.com/medline/citation/29433497/A_painful_experience_of_limited_understanding:_healthcare_professionals'_experiences_with_palliative_care_of_people_with_severe_dementia_in_Norwegian_nursing_homes_ L2 - https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-018-0282-8 DB - PRIME DP - Unbound Medicine ER -