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Perspectives of family members on planning end-of-life care for terminally ill and frail older people.
J Pain Symptom Manage. 2014 May; 47(5):876-86.JP

Abstract

CONTEXT

Advance care planning (ACP) is the process by which patients, together with their physician and loved ones, establish preferences for future care. Because previous research has shown that relatives play a considerable role in end-of-life care decisions, it is important to understand how family members are involved in this process.

OBJECTIVES

To gain understanding of the involvement of family members in ACP for older people near the end of life by exploring their views and experiences concerning this process.

METHODS

This was a qualitative research study, done with semistructured interviews. Twenty-one family members were recruited from three geriatric settings in Flanders, Belgium. The data were analyzed using the constant comparative method as proposed by the grounded theory.

RESULTS

Family members took different positions in the ACP process depending on how much responsibility the family member wanted to take and to what extent the family member felt the patient expected him/her to play a part. The position of family members on these two dimensions was influenced by several factors, namely acknowledgment of the imminent death, experiences with death and dying, opinion about the benefits of ACP, burden of initiating conversations about death and dying, and trust in health care providers. Furthermore, the role of family members in ACP was embedded in the existing relationship patterns.

CONCLUSION

This study provides insight into the different positions of family members in the end-of-life care planning of older patients with a short life expectancy. It is important for health care providers to understand the position of a family member in the ACP of the patient, take into account that family members may experience an active role in ACP as burdensome, and consider existing relationship patterns.

Authors+Show Affiliations

Nursing Science, Department of Public Health, Faculty of Medicine and Health Sciences, Ghent University, Ghent, Belgium; Department of Geriatrics, Ghent University Hospital, Ghent, Belgium. Electronic address: ineke.vaneechoud@ugent.be.Department of Geriatrics, Ghent University Hospital, Ghent, Belgium.Department of Geriatrics, Ghent University Hospital, Ghent, Belgium.Nursing Science, Department of Public Health, Faculty of Medicine and Health Sciences, Ghent University, Ghent, Belgium.Department of Geriatrics, Ghent University Hospital, Ghent, Belgium.Department of General Practice and Primary Health Care, Faculty of Medicine and Health Sciences, Ghent University, Ghent, Belgium.Department of Medical Oncology, Ghent University Hospital, Ghent, Belgium.Nursing Science, Department of Public Health, Faculty of Medicine and Health Sciences, Ghent University, Ghent, Belgium.

Pub Type(s)

Journal Article
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

24035067

Citation

van Eechoud, Ineke J., et al. "Perspectives of Family Members On Planning End-of-life Care for Terminally Ill and Frail Older People." Journal of Pain and Symptom Management, vol. 47, no. 5, 2014, pp. 876-86.
van Eechoud IJ, Piers RD, Van Camp S, et al. Perspectives of family members on planning end-of-life care for terminally ill and frail older people. J Pain Symptom Manage. 2014;47(5):876-86.
van Eechoud, I. J., Piers, R. D., Van Camp, S., Grypdonck, M., Van Den Noortgate, N. J., Deveugele, M., Verbeke, N. C., & Verhaeghe, S. (2014). Perspectives of family members on planning end-of-life care for terminally ill and frail older people. Journal of Pain and Symptom Management, 47(5), 876-86. https://doi.org/10.1016/j.jpainsymman.2013.06.007
van Eechoud IJ, et al. Perspectives of Family Members On Planning End-of-life Care for Terminally Ill and Frail Older People. J Pain Symptom Manage. 2014;47(5):876-86. PubMed PMID: 24035067.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Perspectives of family members on planning end-of-life care for terminally ill and frail older people. AU - van Eechoud,Ineke J, AU - Piers,Ruth D, AU - Van Camp,Sigrid, AU - Grypdonck,Mieke, AU - Van Den Noortgate,Nele J, AU - Deveugele,Myriam, AU - Verbeke,Natacha C, AU - Verhaeghe,Sofie, Y1 - 2013/09/12/ PY - 2013/01/31/received PY - 2013/05/31/revised PY - 2013/06/14/accepted PY - 2013/9/17/entrez PY - 2013/9/17/pubmed PY - 2015/4/7/medline KW - Advance care planning KW - aged KW - family KW - terminal care SP - 876 EP - 86 JF - Journal of pain and symptom management JO - J Pain Symptom Manage VL - 47 IS - 5 N2 - CONTEXT: Advance care planning (ACP) is the process by which patients, together with their physician and loved ones, establish preferences for future care. Because previous research has shown that relatives play a considerable role in end-of-life care decisions, it is important to understand how family members are involved in this process. OBJECTIVES: To gain understanding of the involvement of family members in ACP for older people near the end of life by exploring their views and experiences concerning this process. METHODS: This was a qualitative research study, done with semistructured interviews. Twenty-one family members were recruited from three geriatric settings in Flanders, Belgium. The data were analyzed using the constant comparative method as proposed by the grounded theory. RESULTS: Family members took different positions in the ACP process depending on how much responsibility the family member wanted to take and to what extent the family member felt the patient expected him/her to play a part. The position of family members on these two dimensions was influenced by several factors, namely acknowledgment of the imminent death, experiences with death and dying, opinion about the benefits of ACP, burden of initiating conversations about death and dying, and trust in health care providers. Furthermore, the role of family members in ACP was embedded in the existing relationship patterns. CONCLUSION: This study provides insight into the different positions of family members in the end-of-life care planning of older patients with a short life expectancy. It is important for health care providers to understand the position of a family member in the ACP of the patient, take into account that family members may experience an active role in ACP as burdensome, and consider existing relationship patterns. SN - 1873-6513 UR - https://www.unboundmedicine.com/medline/citation/24035067/Perspectives_of_family_members_on_planning_end_of_life_care_for_terminally_ill_and_frail_older_people_ L2 - https://linkinghub.elsevier.com/retrieve/pii/S0885-3924(13)00392-8 DB - PRIME DP - Unbound Medicine ER -