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01.12.2014 | Research article | Ausgabe 1/2014 Open Access

BMC Palliative Care 1/2014

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?

BMC Palliative Care > Ausgabe 1/2014
Fred Burge, Beverley Lawson, Grace Johnston, Yukiko Asada, Paul F McIntyre, Eva Grunfeld, Gordon Flowerdew
Wichtige Hinweise

Electronic supplementary material

The online version of this article (doi:10.​1186/​1472-684X-13-25) contains supplementary material, which is available to authorized users.

Competing interests

The authors report no conflicts of interest.

Authors’ contributions

FB conceived the study, participated in the design and coordination, helped to draft and finalize the manuscript. BL participated in the conceptualization and design of the study, acted as coordinator, performed the statistical analyses and helped to draft and finalize the manuscript. GJ participated in the conceptualization of the project, aided with the interpretation of results and helped to finalize the manuscript. YA, PM, EG and GF participated in the conceptualization of the project and helped to finalize the manuscript. All authors read and approved the final manuscript.



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.


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.


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.


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.
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