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?

Abstract

BackgroundImproving 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.MethodDeath 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.Results1358 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.ConclusionBereaved 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.

Psychosocial consequences of living with breathlessness due to advanced disease

“…In fact, breathlessness is one of the most common reasons for emergency room visits of patients with advanced cancer receiving palliative care [17]. Moreover, a study exploring the relationship between unmet needs in the last month of life and the site of end-of-life care found that help with breathlessness was more frequently reported as an unmet need by bereaved family caregivers of patients who were cared for at home, than in the hospital [18].…”

Quality of End-of-Life Cancer Care in Canada: A Retrospective Four-Province Study Using Administrative Health Care Data

“…The literature also suggests the presence of a discrepancy between what patients report as their preferred place of death (most often home) and their actual place of death [12][13][14][15][16][17][18][19][20] . Compared with people receiving patient-centred palliative care services at home, those who die in institutions such as acute care facilities have unmet needs for symptom control, physician communication, emotional support, and respectful treatment 21,22 .…”

“…Those criticisms have included lack of expertise and of adequate home support services, lack of coordinated comprehensive programs, fragmentation of care, and inadequate caregiver support. Although eol care has been studied in several provinces 14,22,[33][34][35][36][37][38][39] , the quality of data for comparing eol care in cancer patients across Canada is poor.…”

Nonbeneficial Care

“…Strengths of the study include the exceptional agreement with the two NBT definitions that include quality of life and patient self-determination as well as demonstrating providers comfort with being able to differentiate NBT from beneficial treatment with fairly high certainty. Not surprisingly, unrealistic expectations on the part of the patients and their surrogates were felt to be a driving force behind continuing NBT, and there were several variables that demonstrate different perceptions on the part of physicians and nurses; themes that were present 20 years ago (1) and still evident in recent literature (3)(4)(5). Lastly, the proposed solutions are to have better communication, training, and strategies and increased use of advanced care planning.…”

“…A recent study demonstrated that the addition of a palliative care team to an urban ICU led to earlier hospital discharge and an increased number of hospice admissions and transitions to palliative care (6). Including palliative care as an option leads to an improvement in surrogate and patient perception of end-of-life care (3,6,15).…”