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Open Access Highly Accessed Research article

Bereaved family member perceptions of patient-focused family-centred care during the last 30 days of life using a mortality follow-back survey: does location matter?

Fred Burge1, Beverley Lawson1*, Grace Johnston2, Yukiko Asada3, Paul F McIntyre4, Eva Grunfeld5 and Gordon Flowerdew3

Author Affiliations

1 Department of Family Medicine, Dalhousie University, 5909 Veterans Memorial Lane, Abbie J. Lane Building, 8th Floor, Halifax, NS B3H 2E2, Canada

2 School of Health Administration, Dalhousie University, 5161 George St, Suite 700, PO Box 15000, Halifax, Nova Scotia B3H 4R2, Canada

3 Community Health and Epidemiology, Dalhousie University, Center for Clinical Research (2nd & 4th Floors), 5790 University Avenue, PO Box 15000, Halifax, Nova Scotia B3H 4R2, Canada

4 Division of Palliative Medicine, Department of Medicine, Room 307, Bethune Building, Queen Elizabeth II Health Sciences Centre, 1276 South Park Street, Halifax, Nova Scotia B3H 2Y9, Canada

5 Department of Family and Community Medicine and Ontario Institute for Cancer Research, University of Toronto, 500 University Avenue, Room 352, Toronto, Ontario M5G 1V7, Canada

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BMC Palliative Care 2014, 13:25  doi:10.1186/1472-684X-13-25

Published: 14 May 2014

Abstract

Background

Improving end-of-life care is an important international issue. Recently Nova Scotia researchers conducted a mortality follow-back survey to provide a population-based description of care provided to adults during their last 30 days of life as perceived by knowledgeable bereaved family members. Here we describe the relationship between the location where the decedent received the majority of care during their last 30 days and the informant’s perception of the extent of unmet need, as defined by multiple domains of patient-focused, family-centred care.

Method

Death certificate identified informants (next-of-kin) of eligible adults who died between June 2009 and May 2011, in Nova Scotia, Canada were invited to participate in a telephone interview based on the After-Death Bereaved Family Member Interview. Whether or not the informant expressed unmet need or concerns for six patient-focused, family-centred care domains were assessed in relation to the location where the majority of care occurred during the decedent’s last 30 days.

Results

1358 informants took part (25% response rate). Results of 1316 eligible interviews indicated home (39%) was the most common location of care, followed by long-term care (29%), hospital (23%) and hospital-based palliative-care units (9%). Unmet need ranged from 5.6% for dyspnea help to 66% for the emotional and spiritual needs of the family. Although the mean score for overall satisfaction was high (mean = 8.7 in 1–10 scale; SD 1.8), 57% were not completely satisfied. Compared to home, adjusted results indicated greater dissatisfaction with overall care and greater communication concerns in the hospital. Greater unmet need occurred at home for dyspnea. Less overall dissatisfaction and unmet need were expressed about care provided in long-term care facilities and hospital-based palliative-care units.

Conclusion

Bereaved informants were generally highly satisfied with the decedent's care during their last 30 days but variations were evident. Overall, no one location stood out as exceptionally different in terms of perceived unmet need within each of the patient-focused, family-centred care domains. Communication in various forms and family emotional and spiritual support were consistently viewed as lacking in all locations and identified as targeted areas for impacting quality care at end of life.

Keywords:
Terminal care; Caregivers; Health care surveys