Bereaved family members’ perceptions of the quality of end-of-life care across four types of inpatient care settings

The quality of care provided to the dying and their family members has become an important health and social policy issue in Canada and in much of the western world. Despite repeated policy directives encouraging a shift in the setting for health care delivery into the home and away from institutions, the majority of Canadians will spend their final days and die in inpatient care settings [1‐4]. A review of location of death across 45 countries found that 54% of deaths occur in hospital [5]. Researchers have examined the quality of end-of-life (EOL) care within inpatient care settings such as hospices [6, 7] [8], acute care [9‐12], extended care [13‐15], critical care [16], and palliative care units [6, 17]. Yet, few studies compare the quality of EOL care across settings from the perspective of family members and, studies that do, tend to focus on comparing inpatient and home care experiences [18] or reporting on barriers to optimal care in general [19]. Little research focuses on how dying in a particular inpatient care setting (i.e., acute care medical units, palliative care units, extended care units and intensive care units) influences family members’ perceptions of the quality of care.

The focus of this research was on the perceptions of bereaved family members because they have experienced the complete episode of care, including the time of death, have important assessments to make related to care quality, and may be more free to express dissatisfaction with care once the patient has died and they are not dependent on the health care system for care. Additionally, how family members perceive the quality of care provided at the EOL can have a profound influence on how they perceive the health care system as a whole [20, 21]. One study in Western Canada, for example, showed that dissatisfaction with acute hospital care was one of the primary reasons why family members opt to provide EOL care at home, even when they are unprepared or reluctant to do so, or when care becomes overly burdensome for them [22]. Negative perceptions about care quality can also influence how family members adjust to the loss of the person close to them [23, 24]. Research has shown that family members’ dissatisfaction with the quality of EOL care is associated with negative psychological outcomes such as prolonged and pathologic grief, depression and decreased quality of life, and, in turn, can contribute to an increase in the utilization of health care resources by bereaved family members [14, 25‐28]. Some research has suggested that grief following the loss of a significant other, and both patient and family member demographic characteristics [29, 30], may play a role in influencing how individuals appraise certain events in their life but studies examining these characteristics in relation to how bereaved family members perceive care quality are sparse [31]. In addition, there is some indication that psychological traits such as resilience and optimism, may play a role in how people appraise certain life events. Resilience, defined as the ability to withstand and rebound from crisis and adversity or to transform disaster into a growth experience and move forward, is believed to consist of high levels of self-esteem, personal control, and optimism [32]. While resilience affects appraisal of stress, optimism (the belief that “good things are likely to happen”) diminishes the negative impact of life’s difficult experiences [33]. Resilience and optimism have been suggested as protective against the harmful effects of stress on mental and physical health [34‐37], but these concepts have received little attention when studying family perceptions of EOL care.

The overall aim of this study was to gain a better understanding of how bereaved family members perceive the quality of EOL care based on where the patient has died. We define EOL care as care for people in decline who are deemed to be terminal or dying in the foreseeable (near) future [38]. Four care settings were compared: extended care units (ECU), intensive care units (ICU), medical care units (MCU) and palliative care units (PCU). The specific research questions guiding this study were: (1) To what extent are bereaved family members satisfied with the quality of care received at the EOL? (2) Does satisfaction with care vary across different inpatient care settings? and (3) To what extent is satisfaction with care explained by differences in care settings, patient and family member demographics, and psychological variables of family members?

This study involved analysis of data from a cross sectional survey of bereaved family members using a consecutive sample from death records.

In total, 712 of the 1254 patient death records screened over a 21 month period identified eligible family member participants. Of the 712 who were invited to participate, 558 agreed to have their name given to the project coordinator and were mailed the questionnaire. A total of 388 usable questionnaires were returned resulting in a response rate of 70% of surveys sent and 54% of eligible family members. Reasons for non-participation in the study from those who agreed to receive the questionnaire but did not return it included: being too busy to participate; not being interested; not wanting to re-live the experience; believing that the survey would be emotionally challenging; and believing that the majority of questions did not apply to their experience. Of the 388 family members who responded, 155 rated their satisfaction with PCUs, 140 with MCUs, 63 with ECUs, and 30 with ICUs.

The overall aim of this study was to gain a better understanding of how bereaved family members perceive the quality of EOL care based on where the patient has died. While findings suggest that there is room for improvement across all settings of care, the findings particularly reveal the need for greater efforts towards improving the quality of EOL care provided in acute care medical units. This is consistent with results from other studies, which indicate that up to 35% of all hospital inpatients have palliative care needs [21, 24, 51] with these needs going largely unaddressed in acute care; patients and families report poor quality care, characterized by aggressive therapies, unnecessary pain, and depersonalized practices by providers [22, 52‐56]. While resource constraints, including the absence of specialized palliative care consultation services may be one factor explaining lower overall satisfaction with acute care for bereaved family members in this study, the tendency toward curative and treatment-oriented care in acute care, and a lack of integration of palliative care approaches to care [57, 58] may also play a role. Gott et al. [59] explored how transitions to a palliative approach are managed in acute care, citing challenges such as lack of discussion with patients about prognosis and communication difficulties among team members as barriers. Indeed, in the present study, 56% of family members in acute care were not satisfied with participation in decision-making. Other research points to communication breakdowns among the interprofessional team and differing perspectives among nursing and medical staff on what constitutes quality of care for people with chronic life-limiting illnesses [60]. Additionally, a prevailing belief that dying patients “don’t belong” in acute care [60, 61] can sometimes direct providers’ attention toward a desire to discharge these patients to palliative care services instead of considering the important role that acute care medical units have in the care of the dying.

As acute care still functions as a major provider of EOL care in Canada and elsewhere [1‐4], improving the quality of EOL care should be a priority, both for cancer patients - the more traditional recipients of palliative care - and for the larger population of people with life-limiting conditions such as those with advancing heart, lung and kidney disease, frailty and dementias. Integration of a palliative approach has been cited as one possible solution [57, 62, 63], but a lack of conceptual clarity about what is meant by a palliative approach hampers widespread application. Yet, a palliative approach, which involves building the capacity of providers who do not specialize in palliative care to adopt adopt the foundational principles of palliative care, adapt palliative care knowledge and expertise to the illness trajectories of people with chronic life-limiting conditions other than cancer, and embed this adapted knowledge “upstream” into the delivery of care across care settings [57], requires consideration if improvements for the dying in acute care are to be achieved. Interventions such as using the “individualized” version of the CANHELP on medical teaching units is another promising improvement strategy to be considered if we are to achieve improvements in EOL care in these settings [64].

Despite the fact that family members were generally satisfied with the quality of care in the PCUs, findings suggest that there is room for improvement in areas that PCUs aim to excel. We might have expected to see higher satisfaction scores for all of the CANHELP subscales given the emphasis in palliative care on communication, decision making, symptom management and attention to psychosocial and spiritual concerns. Though illness management was the only subscale with a statistically significant difference in family member ratings between PCUs and ICUs, ICU ratings were observed to be higher for all but one subscale. Perhaps this is not surprising given that the ICU environment tends to have higher staffing ratios than most inpatient settings [65, 66]. At the same time, ICU is an environment that is highly technical, institutionalized, and where staff have not traditionally been exposed to much formal palliative care training [67, 68]. The lower than expected PCU scores run counterintuitive to clinical reports where families in palliative care report how deeply grateful they are for the care, services and support provided [31, 69]. However, it may be that our study of bereaved family members provides us with a different picture of their perceptions of care quality. Some reports suggest that family members are sometimes reluctant to be critical of palliative care services when the patient is alive because they do not want their complaints conceived as being non-appreciative of care and support or they do not want their critical comments to influence care that the patient receives [70, 71]. This is consistent with the work of the Picker Institute in the United Kingdom that has shown that real time satisfaction scores tend to be more favorable than retrospective scores and may lead to the conclusion that quality of care is better than it really is [72].

Finally, as Fig. 2 reveals, psychological variables and type of setting accounted for most of the explained variances in the CANHELP subscales and total score. That is, while psychological variables, mainly resilience of family members, play an important role in perceptions of the quality of EOL care, the type of care setting in which EOL care occurs, and several other characteristics of family members (e.g., their employment status, whether they provide care, and whether they live with the care recipient), are also important considerations in how bereaved family members appraise the quality of EOL care. These findings are not unexpected but point to some possible sites for targeted intervention. For example, acute care hospital interventions such as advance care planning has been shown to improve EOL care, enhance patient and family satisfaction and reduce stress, anxiety and depression among surviving relatives [73]. Likewise, research on resilience is being used to design interventions in other populations (i.e., helping families cope with a parent with a depressive disorder) and that may have applicability to supporting families in EOL care situations [74]. Focused attention on improving the delivery of high quality EOL care in all inpatient settings and on supporting families should be a goal for health system managers and administrators. The aging of the population along with increasing numbers of people diagnosed with chronic life-limiting illnesses will necessitate expansion or revision of existing services to meet the needs for EOL care, at least into the foreseeable future. Home care is often cited as the current solution to meet rising needs for palliative care [75, 76] and is reported to be the place where most people would prefer to be cared for and die [77‐80]. However, without substantive investments in home-based palliative care it is unclear how this goal will be achieved or even sustained without adding significant cost to an already fragile system [75, 81] especially without shifting the financial burden to families [82]. Further, while findings not surprisingly suggest that resilient people are more likely to be satisfied with their care, there is a concurrent concern that resiliency may mask the very real quality of care and systemic issues that prevent excellent EOL care from occurring in inpatient settings. Research has shown that lack of knowledge of how to complain, low expectations, feelings of gratitude, fear of retribution and deference to health professionals may mask the problems patients and families face in receiving quality care [83‐85]. Indeed, analyses of qualitative data collected for this study and published elsewhere [86] suggests that family members sometimes rationalize negative care experiences as an unavoidable reality within a constrained health care system, excusing front-line staff and the larger health care system from responsibility when undesirable care occurs.

Improving care at the EOL is a key policy direction to improve the quality of life for patients facing life-limiting conditions and their family members [87‐89]. Understanding how quality of care is perceived by family members across inpatient care settings is one way to determine specific domains of care that are in need of improvement and to begin to address barriers to quality care. Although enhancing quality of EOL care is important in all settings, this study adds to the increasing body of evidence suggesting a critical need to focus on improvements in acute care, and suggests that care provided in palliative care units might also require attention.