TY - JOUR
T1 - Hospice Family Members' Perceptions of and Experiences With End-of-Life Care in the Nursing Home
AU - Oliver, Debra Parker
AU - Washington, Karla
AU - Kruse, Robin L.
AU - Albright, David L.
AU - Lewis, Alexandria
AU - Demiris, George
N1 - Funding Information:
This study was funded by the National Institute of Nursing Research (grant number 1R01NR011472 ). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute of Nursing Research or the National Institutes of Health. This study was also partly funded by the University of Missouri Student Research Fellowship .
Publisher Copyright:
© 2014 AMDA - The Society for Post-Acute and Long-Term Care Medicine.
PY - 2014
Y1 - 2014
N2 - Objective: Even though more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had 2 research questions; (1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared with family members of community dwelling hospice patients? (2) What are family members' perceptions of and experiences with end-of-life care in the nursing home setting? Methods: This study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family members of hospice patients residing in the community. Results: Outcome measures for family members of nursing home residents were compared (n= 176) with family members of community-dwelling hospice patients (n= 267). The family members of nursing home residents reported higher quality of life; however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents, concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting. Conclusion: These interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for residents. This study suggests that nursing homes should embrace the opportunity to demonstrate the value of family participation in the care-planning process.
AB - Objective: Even though more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had 2 research questions; (1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared with family members of community dwelling hospice patients? (2) What are family members' perceptions of and experiences with end-of-life care in the nursing home setting? Methods: This study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family members of hospice patients residing in the community. Results: Outcome measures for family members of nursing home residents were compared (n= 176) with family members of community-dwelling hospice patients (n= 267). The family members of nursing home residents reported higher quality of life; however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents, concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting. Conclusion: These interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for residents. This study suggests that nursing homes should embrace the opportunity to demonstrate the value of family participation in the care-planning process.
KW - End-of-life
KW - Family
KW - Hospice
KW - Nursing home
KW - Palliative care
UR - http://www.scopus.com/inward/record.url?scp=84927692800&partnerID=8YFLogxK
U2 - 10.1016/j.jamda.2014.05.014
DO - 10.1016/j.jamda.2014.05.014
M3 - Article
C2 - 25017391
AN - SCOPUS:84927692800
SN - 1525-8610
VL - 15
SP - 744
EP - 750
JO - Journal of the American Medical Directors Association
JF - Journal of the American Medical Directors Association
IS - 10
ER -