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Bereaved family members’ perceptions of the quality of end-of-life care across four types of inpatient… Stajduhar, Kelli; Sawatzky, Richard; Robin Cohen, S.; Heyland, Daren K; Allan, Diane; Bidgood, Darcee; Norgrove, Leah; Gadermann, Anne M Nov 25, 2017

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RESEARCH ARTICLE Open AccessBereaved family members’ perceptions ofthe quality of end-of-life care across fourtypes of inpatient care settingsKelli Stajduhar1*, Richard Sawatzky2, S. Robin Cohen3, Daren K. Heyland4, Diane Allan5, Darcee Bidgood6,Leah Norgrove7 and Anne M. Gadermann8AbstractBackground: The aims of this study were to gain a better understanding of how bereaved family membersperceive the quality of EOL care by comparing their satisfaction with quality of end-of-life care across four differentsettings and by additionally examining the extent to which demographic characteristics and psychological variables(resilience, optimism, grief) explain variation in satisfaction.Methods: A cross-sectional mail-out survey was conducted of bereaved family members of patients who had died inextended care units (n = 63), intensive care units (n = 30), medical care units (n= 140) and palliative care units (n = 155).1254 death records were screened and 712 bereaved family caregivers were identified as eligible, of which 558 (whowere initially contacted by mail and then followed up by phone) agreed to receive a questionnaire and 388 returned acompleted questionnaire (response rate of 70%). Measures included satisfaction with end-of-life care (CANHELP- CanadianHealth Care Evaluation Project - family caregiver bereavement version; scores range from 0 = not at all satisfied to 5 =completely satisfied), grief (Texas Revised Inventory of Grief (TRIG)), optimism (Life Orientation Test – Revised) andresilience (The Resilience Scale). ANCOVA and multivariate linear regression were used to analyze the data.Results: Family members experienced significantly lower satisfaction in MCU (mean = 3.69) relative to other settings(means of 3.90 [MCU], 4.14 [ICU], and 4.00 [PCU]; F (3371) = 8.30, p = .000). Statistically significant differences were alsoobserved for CANHELP subscales of “doctor and nurse care”, “illness management”, “health services” and“communication”. The regression model explained 18.9% of the variance in the CANHELP total scale, and between 11.8%and 27.8% of the variance in the subscales. Explained variance in the CANHELP total score was attributable to the settingof care and psychological characteristics of family members (44%), in particular resilience.Conclusion: Findings suggest room for improvement across all settings of care, but improving quality in acute care andpalliative care should be a priority. Resiliency appears to be an important psychological characteristic in influencing howfamily members appraise care quality and point to possible sites for targeted intervention.Keywords: Bereaved family members’, Quality of care, Inpatient healthcare settings, End-of-life care, Palliative care* Correspondence: kis@uvic.ca1School of Nursing and Institute on Aging and Lifelong Health, University ofVictoria, PO Box 1700 STN CSC, Victoria, BC V8W 2Y2, CanadaFull list of author information is available at the end of the article© The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Stajduhar et al. BMC Palliative Care  (2017) 16:59 DOI 10.1186/s12904-017-0237-5BackgroundThe quality of care provided to the dying and their familymembers has become an important health and social pol-icy issue in Canada and in much of the western world.Despite repeated policy directives encouraging a shift inthe setting for health care delivery into the home andaway from institutions, the majority of Canadians willspend their final days and die in inpatient care settings[1–4]. A review of location of death across 45 countriesfound 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], criticalcare [16], and palliative care units [6, 17]. Yet, few studiescompare the quality of EOL care across settings from theperspective of family members and, studies that do, tendto focus on comparing inpatient and home care experi-ences [18] or reporting on barriers to optimal care ingeneral [19]. Little research focuses on how dying in a par-ticular inpatient care setting (i.e., acute care medical units,palliative care units, extended care units and intensivecare units) influences family members’ perceptions of thequality of care.The focus of this research was on the perceptions ofbereaved family members because they have experiencedthe complete episode of care, including the time ofdeath, have important assessments to make related tocare quality, and may be more free to express dissatisfac-tion with care once the patient has died and they are notdependent on the health care system for care. Addition-ally, how family members perceive the quality of careprovided at the EOL can have a profound influence onhow they perceive the health care system as a whole [20,21]. One study in Western Canada, for example, showedthat dissatisfaction with acute hospital care was one ofthe primary reasons why family members opt to provideEOL care at home, even when they are unprepared orreluctant to do so, or when care becomes overly burden-some for them [22]. Negative perceptions about carequality can also influence how family members adjust tothe loss of the person close to them [23, 24]. Researchhas shown that family members’ dissatisfaction with thequality of EOL care is associated with negative psycho-logical 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 healthcare resources by bereaved family members [14, 25–28].Some research has suggested that grief following the lossof a significant other, and both patient and family mem-ber demographic characteristics [29, 30], may play a rolein influencing how individuals appraise certain events intheir life but studies examining these characteristics inrelation to how bereaved family members perceive carequality are sparse [31]. In addition, there is someindication that psychological traits such as resilience andoptimism, may play a role in how people appraisecertain life events. Resilience, defined as the ability towithstand and rebound from crisis and adversity or totransform disaster into a growth experience and moveforward, is believed to consist of high levels of self-esteem, personal control, and optimism [32]. Whileresilience affects appraisal of stress, optimism (the beliefthat “good things are likely to happen”) diminishes thenegative impact of life’s difficult experiences [33].Resilience and optimism have been suggested as protect-ive against the harmful effects of stress on mental andphysical health [34–37], but these concepts havereceived little attention when studying family percep-tions of EOL care.The overall aim of this study was to gain a betterunderstanding of how bereaved family members perceivethe quality of EOL care based on where the patient hasdied. We define EOL care as care for people in declinewho are deemed to be terminal or dying in the foresee-able (near) future [38]. Four care settings werecompared: extended care units (ECU), intensive careunits (ICU), medical care units (MCU) and palliativecare units (PCU). The specific research questionsguiding this study were: (1) To what extent are bereavedfamily members satisfied with the quality of carereceived at the EOL? (2) Does satisfaction with care varyacross different inpatient care settings? and (3) To whatextent is satisfaction with care explained by differencesin care settings, patient and family member demograph-ics, and psychological variables of family members?MethodsThis study involved analysis of data from a crosssectional survey of bereaved family members using aconsecutive sample from death records.SampleStructured surveys were completed by a sample ofbereaved family members who had a relative or frienddie on an ECU, ICU, MCU or PCU in one health regionin Western Canada in the past 3–6 months. For thepurpose of this study, family member was defined as theperson who had the most contact with the dying patientduring the last days of life and who could comment onthe quality of care provided. Additional eligibility criteriaincluded a length of stay of more than 48 h and thefamily member being more than 18 years old and able tospeak English. Family members were excluded if theirrelative or friend died because of traumatic causes suchas an accident, homicide, suicide, or unexpected myocar-dial infarction. This exclusion criterion was necessary toensure that the sample identified was one that would beStajduhar et al. BMC Palliative Care  (2017) 16:59 Page 2 of 12representative of people who would typically requireEOL care.SettingsIn this particular health region three ECUs wererepresented in the study as they had a sufficient numberof resident deaths to allow for evaluation. ECUs, oftenreferred to as nursing homes, provide longer-termresidential care for people unable to remain at home andwho are diagnosed with chronic conditions including,for example, frailty and dementia. Care is providedprimarily by resident care aides and licensed practicalnurses under the supervision of a registered nurse.Services from allied health professionals such as socialworkers, occupation or physical therapists, recreationaltherapists, chaplaincy and pharmacy also exist. A med-ical director oversees medical care and is responsible forimplementation of relevant policies, but ongoing medicalcare and monitoring is provided by the patient’s generalpractitioner. End-of-life care is provided by facility staffwith limited or no access to specialist palliative care forcomplex cases.The only two ICUs in the health region, both of whichare represented in the study, provide care to critically illpatients as a result of trauma or severe exacerbations ofillnesses. ICUs typically have a one-to-one registerednurse-to-patient ratio, and access to in-house internists.The seven MCUs represented in the study providecare for acutely ill patients with a variety of illnesses(malignant and non-malignant conditions), but notrequiring surgical interventions. Care in MCUs is pro-vided by licensed practical nurses and registered nursesand the registered nurse-to-patient ratio is considerablylower than for ECU and higher than for ICU (typicallyone nurse for five to six patients). Services from alliedhealth professionals (most commonly respiratory techni-cians, social workers, chaplains, occupational and phys-iotherapists, nutritionists) are also available in ICU andMCU settings depending on patient and family need.Specialist palliative care services are available on referralbut access is limited because of resource constraints. Inthis health region, no regular palliative care consultservice is available to acute care, including MCUs andICUs, or ECUs.Finally, the only two PCUs in the health region, bothof which are represented in the study, offer a total of 27beds. One of the PCUs has 17 beds and is the primaryreferral site for complex symptom issues, and has in-house specialist services including palliative care physi-cians, counsellors, spiritual care providers and a largevolunteer base. Adjunct and more limited services areavailable from occupational and physical therapists,music therapists and pharmacists. Nursing care isprovided by licensed practical and registered nurses andsupported by a Clinical Nurse Leader. The other PCUhas 10 beds, with care provided by licensed practical andregistered nurses. A palliative care physician is employedfor approximately 10 h per week to oversee medical careand is responsible for implementation of relevantpolicies. Ongoing medical care and monitoring is pro-vided by general practitioners, depending on the severityof symptoms. There are resources from allied healthprofessionals (i.e., social work, spiritual care/chaplains,music therapy, pharmacy, occupational and physicaltherapy) to support the unit that are shared with otherhospital units at the site. On occasion, patients from thisunit are transferred to the 17-bed PCU at the request offamily or when the care situation requires moreresources than this unit can provide. The nurse-to-patient ratio is typically one nurse to for four to fivepatients on both of these units, and the large majority ofpatients being cared for have a malignancy.RecruitmentTo identify eligible bereaved family members, permissionwas received from the health authority to screen andaccess death records. Registered nurses employed by thehealth authority were hired as research assistants toreview the charts of patients who had died and identify acontact person. Letters describing the study were thensent by the research assistants (health region employees)to each eligible contact. A follow-up phone call from theresearch assistant was made to determine if the contactperson on the chart was most involved with the patient’scare and if so, they were invited to participate. In the caseswhere no one answered, up to five phone calls were madeon different days of the week and at different times of theday. If the identified contact person said they were unableto comment on the quality of care, they were asked toidentify an alternate who was then contacted.Data collectionThose agreeing to participate were mailed a question-naire by the research assistant and asked to return it in apre-addressed stamped envelope. However, six partici-pants (1.5% of the sample) requested to complete thequestionnaire by phone and this was accommodated.Family members of patients who received care in mul-tiple care settings in their last month of life (because ofin-patient transfers) were asked to rate the care of thesetting in which their loved one died. All family mem-bers signed a letter of informed consent prior to partici-pating. Ethical approval for the study was granted by auniversity-based ethics review board.InstrumentsSatisfaction with EOL care in the last month of theirrelative or friend’s life was measured using theStajduhar et al. BMC Palliative Care  (2017) 16:59 Page 3 of 12CANHELPa (Canadian Health Care Evaluation Project)instrument [39, 40]. This self-report instrument wasdeveloped and validated for patients at the EOL andtheir family members to assess satisfaction with a varietyof actionable items. The CANHELP Bereavement ver-sion used in this study was a 43-item instrument withtwo items about overall satisfaction with care, and 41items that fall into one of six quality of care subscalesthat each had good internal consistency reliability (basedon the ordinal alpha; [41]) in our study sample: doctorand nurse characteristics (8 items; ordinal alpha = 0.94);illness management (9 items; ordinal alpha = 0.92);health service characteristics (4 items; ordinal alpha =0.81); communication and decision-making (11 items;ordinal alpha = 0.92); you and your relationships withothers (5 items; ordinal alpha = 0.73); and spiritualityand meaning (4 items; ordinal alpha = 0.89). Responsesto each item are scored on a 5-point scale ranging from‘not at all satisfied’ (1) to ‘completely satisfied’ (5). A ‘notapplicable’ response category is available for items thatfamily members believe do not apply to their particularsituation. The subscale scores are the means of thecorresponding items and the total score is the mean ofthe 41 items (ordinal alpha = 0.96), with higher scoresindicating greater satisfaction (ranging from 1 to 5).In addition to demographic information collected aspart of the self-report questionnaire, participant grief,optimism and resilience were also measured. Level ofgrief in bereavement was measured using the TexasRevised Inventory of Grief (TRIG) [42, 43]. This is aLikert-type measure in two parts. Part 1 comprises eightitems, measuring initial grief around the time of death;Part 2, with 13 items, assesses present grief. Responsesare scored on a 6-point scale ranging from completelytrue (1) to completely false (6). The authors reportedacceptable internal consistency reliability (Cronbach’salpha) of 0.77 (Part 1) and 0.86 (Part 2) and a test-restreliability of 0.74 (Part 1) and 0.88 (Part 2). The overallTRIG score, based on the mean of all item responses,was used in the analysis. Higher scores are indicative ofless grief.Optimism was measured using the Life OrientationTest – Revised, a personality measure used to assessindividual differences in generalized optimism [44,45]. This is a 10-item measure scored on a 4-pointLikert scale ranging from strongly disagree (0) tostrongly agree (4). The authors provide evidence forinternal consistency (Cronbach’s alpha = .78) andGiven et al. [34] also reported moderate internalconsistency with family caregivers of cancer patients(Cronbach’s alpha = .80). The overall optimism scorebased on the average of all 10 items (after reversecoding of negatively worded items) was used in thisstudy, with higher scores indicating greater optimism.Resilience was measured using a resilience scale devel-oped by Wagnild and Young [46]. This measure is com-prised of 25 questions using a 7-point Likert scaleranging from strong disagree (1) to strongly agree (7).Authors provide evidence for this measure’s internalconsistency (Cronbach alpha = .72–.94) and test-retestreliability (r = .67–.84), construct validity, and concur-rent validity [47]. This measure has been widely used toidentify the degree of individual resilience (personalcompetence and acceptance of self and life) in multiplegroups (adolescents, younger and older adults) [48]. Theoverall resilience measure, based on the average meanscore of all items, was used in this study, with higherscores indicating greater resilience.Data analysisDescriptive statistics (means and standard deviations[SD] for continuous variables and percentages forcategorical variables) were used to descibe the demo-graphic variables. To examine differences in demograph-ics between settings, chi-square tests were used for thecategorical variables, and analysis of variance (ANOVA)was used for age, a continuous variable. The firstresearch question was addressed by examining the distri-butions of the CANHELP total and subscale scores.Analysis of covariance (ANCOVA) was used to evalu-ate the extent to which the CANHELP total score andthe subscale scores differed across the four types of set-tings (research question #2), while controlling for vari-ability in patient characteristics (age, gender, type ofcancer), caregiver characteristics (age, gender, employ-ment status, relationship to patient, provided care, livedwith care recipient), and psychological variables of familymembers (optimism, resilience, grief ). Multivariate linearregression was used to examine the extent to whichCANHELP total and subscale scores (dependent vari-ables) were explained by the following independent vari-ables: type of care setting, the same patient and familymember characteristics as noted above, and the psycho-logical variables of family members (optimism, resilience,grief ) (research question #3). A p-value of <.05 was con-sidered indicative of statistical significance. For eachdependent variable, a Pratt Index was computed toevaluate the relative importance of each independentvariable [49]. The Pratt Index values represent the per-centages of the explained variance in the dependent vari-able (i.e., the R-squared) that are attributable to eachindependent variable in the regression analysis.Multiple imputation, using mean and varianceadjusted weighted least squares estimation, was used tocreate 20 imputed data files with imputed values formissing data for variables that were included in the ana-lysis (total missing was 0.9%). In addition, based on rec-ommendations by Holman et al. [50] multipleStajduhar et al. BMC Palliative Care  (2017) 16:59 Page 4 of 12imputation was used to impute the “not applicable”response category for the CANHELP items (total “notapplicable” was 9.0%).ResultsIn total, 712 of the 1254 patient death records screenedover a 21 month period identified eligible family mem-ber participants. Of the 712 who were invited to partici-pate, 558 agreed to have their name given to the projectcoordinator and were mailed the questionnaire. A totalof 388 usable questionnaires were returned resulting in aresponse rate of 70% of surveys sent and 54% of eligiblefamily members. Reasons for non-participation in thestudy from those who agreed to receive the question-naire but did not return it included: being too busy toparticipate; not being interested; not wanting to re-livethe experience; believing that the survey would be emo-tionally challenging; and believing that the majority ofquestions did not apply to their experience. Of the 388family members who responded, 155 rated theirsatisfaction with PCUs, 140 with MCUs, 63 with ECUs,and 30 with ICUs.Sample description by settingResults pertaining to the comparison of demographiccharacteristics for both family members and patients(care recipients) across settings is provided in Table 1.There were several significant differences in demo-graphic characteristics of care recipients and their familymembers across the four types of care settings (seeTable 1 for details on distributions and statistical signifi-cance). Not surprisingly, the average age of care recipi-ents was highest in the ECU setting (84.7 years) andcare recipients in the ECU setting stayed much longer incare (92% stayed more than 34 days) than in any of theother settings. The shortest length of stay was in theICU setting, with 58.6% of care recipients staying nomore than 5 days. Care recipients in the ICU settingwere younger (mean = 64.5 years on average) and lesslikely to be a relative (33.3%), relative to the otherTable 1 Sample description: care recipients and family membersTotal (n = 388) ECU (n = 63) ICU (n = 30) MCU (n = 140) PCU (n = 155) pCare recipientsAge (years)/Mean(SD) (n = 384) 78.4 (14.0) 84.7b,d (14.1) 64.5a,c,d (10.9) 79.3b (13.9) 77.5a,b (12.6) .000Female (%) (n = 381) 54.3 67.2b 33.3a,c,d 54.8b 52.9b .023Cancer (%) (n = 388) 38.4 7.9c,d 3.3c,d 21.4a,b,d 72.9a,b,c .000Days on unit (%) (n = 379) .000Q1: <= 5 26.9 0.0b,c,d 58.6a,c,d 29.2a,b 29.8a,bQ2: 5 to <= 11 23.5 1.6b,c,d 24.1a 24.8a 31.1aQ3: 11 to <= 34 25.1 6.5c,d 13.8c 35.0a,b 25.9aQ4: >34 24.5 92.0b,c,d 3.4a 10.9a 13.2aFamily membersAge (years)/Mean(SD) (n = 383) 61.2 (12.9) 63.6 (12.5) 59.6 (12.9) 60.5 (12.5) 61.3 (13.4) nsFemale (%) (n = 385) 67.8 69.4 70.0 67.4 67.1 nsMarried (%) (n = 385) 65.5 77.4b,d 53.3a 68.8 60.0a .035Caregiving for (%) (n = 383) .000Spouse 35.8 21.3b,d 60.0a,c 28.5b,d 43.2a,cParent/in-law 49.6 65.6b,d 20.0a,c,d 53.3b 45.8a,bOther 14.6 13.1 20.0 18.2 11.0Working (%) (n = 381) 43.8 50.0 40.0 46.0 40.3 nsCared for care recipient (%) (n = 385) 69.7 66.1b,d 34.5a,c,d 64.9b,d 81.8a,b,c .000Lived with care recipient (%) (n = 385) 46.5 37.1b,d 63.3a,c 39.1b,d 53.5a,c .008Psychological variablesOptimism possible range of 0 to 4: Mean(SD) (n = 375) 2.79 (0.64) 2.78 (0.61) 2.86 (0.71) 2.87 (0.62) 2.70 (0.64) nsResilience possible range of 1 to 7: Mean(SD) (n = 379) 5.73 (0.74) 5.75 (0.69) 5.70 (0.66) 5.81 (0.61) 5.66 (0.85) nsGrief possible range of 1 to 6: Mean(SD) (n = 369) 4.64 (1.15) 4.86a (1.08) 4.03a,c (1.26) 4.90b,d (1.03) 4.43c (1.19) .000Note. Analyses based on non-imputed data. asignificant difference with ECU. bsignificant difference with ICU. csignificant difference with MCU. dsignificantdifference with PCU. P-value is based on ANOVA for continuous variables and a chi-square test for categorical variables. ns not significant. Q quartile. SDstandard deviationStajduhar et al. BMC Palliative Care  (2017) 16:59 Page 5 of 12settings. Distributions of sex and age of family memberswere very similar across the four settings. Family mem-bers in the ICU setting were most likely to be a spouse(60.0%) of the care recipient, while family members froman ECU setting were most likely to have been caring fora parent/in-law (65.6%). The PCU setting had the high-est percentage of family members (81.8%) who indicated“yes” in response to the question “Did you providecare?”. Care recipients in the PCU setting were muchmore likely to have cancer (72.9%) than in any of theother settings (ranging from 7.9% in the ECU to 21.4%in the MCU).CANHELP item, subscale and total scores by settingThe relative frequencies of responses for the 43CANHELP items are presented in Fig. 1, which revealsseveral observable differences between the settings androom for improvement across all settings. Family mem-bers in the MCU setting were least satisfied with overallcare, with 41% reporting being less than satisfied,whereas only 14% in the ICU reported being less thansatisfied. The item that had the lowest satisfactionratings in most of the settings was “you had enough timeand energy to take care of yourself” (ranging from 61%to 66% of family members who reported not beingFig. 1 Percentages of family members within settings who are less than “satisfied” for each CANHELP item. Note. % refers to the percentage ofpeople who are not “satisfied” or “completely satisfied”.* “You participated with your relative or friend in discussions with the doctor relation tohis/her end of life care and treatment plan”Stajduhar et al. BMC Palliative Care  (2017) 16:59 Page 6 of 12satisfied). An example of notable differences betweensettings includes the relatively large percentages offamily members in the ECU (56%), MCU (69%) andPCU (55%) who reported not being satisfied with therelief of emotional problems of the care recipient, suchas depression.Results pertaining to the mean comparison ofCANHELP total and subscale scores across settings arereported in Table 2. Family in the MCU experienced sta-tistically significant lower satisfaction overall (CANHELPtotal mean = 3.68) relative to any of the other settings(means of 3.92 [ECU], 4.12 [ICU], and 4.01 [PCU];F(3371) = 8.30, p = .000). Comparisons of subscale scoresacross settings reveal that satisfaction was significantlygreater in the PCU than MCU for “doctor and nursecare”, “illness management”, “health services”, and “com-munication and decision-making”. Satisfaction in theICU and ECU also tended to be higher than in theMCU for several of the subscales (see Table 2 for statis-tical significance of different subscale comparisons).There were no statistically significant differences for anyof the group comparisons on the “relationships” and“spirituality and meaning” subscales. “Spirituality andmeaning” was the area of least satisfaction in all settings,ranging from 3.46 in the ICU to 3.81 in the PCU.Prediction of CANHELP total and subscale scoresThe regression model including all independent vari-ables explained 18.9% of the variance in the CANHELPtotal scale, and between 11.8% and 27.8% of the variancein the subscales (see Table 3). The partitioning of theexplained variance is shown in Fig. 2. Most of theexplained variance in the CANHELP total score wasattributable to the setting of care (Pratt Index = 44%),notably receiving care in the MCU versus the PCU, andpsychological characteristics of family members (PrattIndex = 41%). In particular, a one-point lower score inresilience (on a scale from 1 to 7) was associated with anaverage relative decrease of 0.21 in the total score (on ascale from 1 to 5). These results were similar for the“illness management” subscale, with a relative decreaseof 0.18. Resilience of family caregivers also accounted formost of the explained variance in the “relationships withothers” (75% of the explained variance) and “spiritualityand meaning” subscales (76% of the explained variance).However, optimism was associated only with “illnessmanagement” and “spirituality and meaning” (regressioncoefficients of 0.15, and 0.23, respectively), and grief wasassociated only with “relationships with others” and“spirituality and meaning”; one-point higher score on theTRIG (i.e., less grief) was associated with a relative increaseof 0.11 for both of these subscale scores. Family membercharacteristics (notably “employment status”), accountedfor most of the explained variance in “health services char-acteristics” (39% of the explained variance), where familymembers who are employed had scores that were 0.29points lower than those who were not employed.DiscussionThe overall aim of this study was to gain a better under-standing of how bereaved family members perceive thequality of EOL care based on where the patient has died.While findings suggest that there is room for improve-ment across all settings of care, the findings particularlyreveal the need for greater efforts towards improving thequality of EOL care provided in acute care medical units.This is consistent with results from other studies, whichindicate that up to 35% of all hospital inpatients havepalliative care needs [21, 24, 51] with these needs goinglargely unaddressed in acute care; patients and familiesreport poor quality care, characterized by aggressivetherapies, unnecessary pain, and depersonalized prac-tices by providers [22, 52–56]. While resource con-straints, including the absence of specialized palliativecare consultation services may be one factor explaininglower overall satisfaction with acute care for bereavedfamily members in this study, the tendency toward cura-tive and treatment-oriented care in acute care, and alack of integration of palliative care approaches to care[57, 58] may also play a role. Gott et al. [59] exploredTable 2 CANHELP scale and subscale means (SD) by setting adjusted for covariatesECU (n = 63) ICU (n = 30) MCU (n = 140) PCU (n = 155) Overall test F(3371), pCANHELP (total) 3.92(1.50)c 4.12(2.30)c 3.68(0.98)a,b,d 4.01(1.04)c 8.30, .000Doctor and nurse care 3.87(1.97) 4.07(3.03)c 3.63(1.38)b,d 4.01(1.38)c 6.01, .000Illness management 3.98(1.85)c 4.26(2.82)c,d 3.64(1.20)a,b,d 3.94 (1.28)b,c 8.39, .000Health services 3.97(1.99)c 4.17(3.43)c 3.70(1.38)a,b,d 4.09(1.38)c 6.89, .001Communication 3.96(1.93)b 4.36(2.95)a,c 3.74(1.26)b,d 4.17(1.34)c 9.76, .000Relationships 3.83(1.60) 3.94(2.48) 3.80(1.08) 3.88(1.12) 2.64, .055Spirituality and meaning 3.81(2.36) 3.46(3.68) 3.54(1.56) 3.81(1.63) 2.64, .059Note. ANCOVA results for each CANHELP scale based on averages across 20 imputations. All means are adjusted for patient characteristics (age, gender, diagnosis(cancer vs. not cancer)), caregiver characteristics (age, gender, employment status, relationship to patient, provided care, lived with care recipient), andpsychological variables of family members (optimism, resilience, grief).astatistically significant difference (p < .05) with ECU. bstatistically significant difference withICU. cstatistically significant difference with MCU. dstatistically significant difference with PCUStajduhar et al. BMC Palliative Care  (2017) 16:59 Page 7 of 12Table 3 Multivariate regression analysisIndependent variables CANHELPTotalCharacteristics ofdoctors and nursesIllnessmanagementHealth servicescharacteristicsCommunication anddecision makingRelationshipswith othersSpiritualityand meaningCare setting (ref = palliative)ECU −0.10 −0.15 0.04 −0.13 −0.21 −0.06 0.00ICU 0.11 0.06 0.32 0.08 0.19 0.06 −0.35MCU −0.33* −0.39* −0.30* −0.39* −0.43* −0.08 −0.27*Care recipient characteristicsAge (years) 0.00 0.00 0.00 0.00 0.00 0.00 0.01Gender (ref = male) 0.02 0.00 −0.05 0.05 0.04 0.11 0.02Diagnosis (cancer versus not)a 0.02 0.04 0.10 0.19 −0.07 0.02 −0.07Family member characteristicsAge (years) 0.00 0.00 0.00 0.01 0.00 0.01* 0.00Gender (ref = male) −0.10 −0.14 −0.15 −0.03 −0.19* 0.06 0.10Employment statusa −0.12 −0.07 −0.14 −0.29* −0.10 −0.09 −0.12Relationship to patientHusband/wife (ref = ‘other’) −0.01 −0.07 0.09 0.19 −0.01 −0.14 −0.10Parent/parent in law(ref = ‘other’)−0.09 −0.03 0.02 0.04 −0.22 −0.22 −0.09Provided carea 0.14 0.14 0.13 0.08 0.24* −0.02 0.09Lived with care recipienta −0.10 0.03 −0.08 0.03 −0.20 −0.31* −0.02Psychological variables of family membersOptimism (possible range of0 to 4)0.09 0.05 0.15* 0.03 0.03 0.11 0.23*Resilience (possible range of1 to 7)0.21* 0.20* 0.18* 0.14* 0.22* 0.25* 0.27*Grief (possible range of 1 to 6) 0.01 −0.03 −0.03 0.01 0.00 0.11* 0.11*R-square 18.90% 11.80% 14.10% 16.20% 15.30% 27.80% 19.50%Note. Unstandardized regression coefficients. ayes versus no (referent). *p < .05 (bolded values)Fig. 2 Relative importance of combined independent variables predicting CANHELP. Note. Pratt Index was used to compute relative importanceas the percentages of explained variance attributable to variability in care settings (ECU, ICU, MCU, PCU), patient characteristics (age, gender,diagnosis (cancer vs. not cancer)), caregiver characteristics (age, gender, employment status, relationship to patient, provided care, lived with carerecipient), and psychological variables of family members (optimism, resilience, grief)Stajduhar et al. BMC Palliative Care  (2017) 16:59 Page 8 of 12how transitions to a palliative approach are managed inacute care, citing challenges such as lack of discussionwith patients about prognosis and communication diffi-culties among team members as barriers. Indeed, in thepresent study, 56% of family members in acute care werenot satisfied with participation in decision-making.Other research points to communication breakdownsamong the interprofessional team and differing perspec-tives among nursing and medical staff on what consti-tutes quality of care for people with chronic life-limitingillnesses [60]. Additionally, a prevailing belief that dyingpatients “don’t belong” in acute care [60, 61] can some-times direct providers’ attention toward a desire todischarge these patients to palliative care servicesinstead of considering the important role that acute caremedical units have in the care of the dying.As acute care still functions as a major provider of EOLcare in Canada and elsewhere [1–4], improving the qualityof EOL care should be a priority, both for cancer patients -the more traditional recipients of palliative care - and forthe larger population of people with life-limiting conditionssuch as those with advancing heart, lung and kidneydisease, frailty and dementias. Integration of a palliativeapproach has been cited as one possible solution [57, 62,63], but a lack of conceptual clarity about what is meant bya palliative approach hampers widespread application. Yet,a palliative approach, which involves building the capacityof providers who do not specialize in palliative care toadopt adopt the foundational principles of palliative care,adapt palliative care knowledge and expertise to the illnesstrajectories of people with chronic life-limiting conditionsother than cancer, and embed this adapted knowledge“upstream” into the delivery of care across care settings[57], requires consideration if improvements for the dyingin acute care are to be achieved. Interventions such as usingthe “individualized” version of the CANHELP on medicalteaching units is another promising improvement strategyto be considered if we are to achieve improvements in EOLcare in these settings [64].Despite the fact that family members were generally sat-isfied with the quality of care in the PCUs, findings sug-gest that there is room for improvement in areas thatPCUs aim to excel. We might have expected to see highersatisfaction scores for all of the CANHELP subscales giventhe emphasis in palliative care on communication, deci-sion making, symptom management and attention to psy-chosocial and spiritual concerns. Though illnessmanagement was the only subscale with a statistically sig-nificant difference in family member ratings betweenPCUs and ICUs, ICU ratings were observed to be higherfor all but one subscale. Perhaps this is not surprisinggiven that the ICU environment tends to have higherstaffing ratios than most inpatient settings [65, 66]. At thesame time, ICU is an environment that is highly technical,institutionalized, and where staff have not traditionallybeen exposed to much formal palliative care training [67,68]. The lower than expected PCU scores run counterin-tuitive to clinical reports where families in palliative carereport how deeply grateful they are for the care, servicesand support provided [31, 69]. However, it may be thatour study of bereaved family members provides us with adifferent picture of their perceptions of care quality. Somereports suggest that family members are sometimes reluc-tant to be critical of palliative care services when thepatient is alive because they do not want their complaintsconceived as being non-appreciative of care and supportor they do not want their critical comments to influencecare that the patient receives [70, 71]. This is consistentwith the work of the Picker Institute in the UnitedKingdom that has shown that real time satisfaction scorestend to be more favorable than retrospective scores andmay lead to the conclusion that quality of care is betterthan it really is [72].Finally, as Fig. 2 reveals, psychological variables andtype of setting accounted for most of the explained vari-ances in the CANHELP subscales and total score. Thatis, while psychological variables, mainly resilience offamily members, play an important role in perceptionsof the quality of EOL care, the type of care setting inwhich EOL care occurs, and several other characteristicsof family members (e.g., their employment status,whether they provide care, and whether they live withthe care recipient), are also important considerations inhow bereaved family members appraise the quality ofEOL care. These findings are not unexpected but pointto some possible sites for targeted intervention. Forexample, acute care hospital interventions such asadvance care planning has been shown to improve EOLcare, enhance patient and family satisfaction and reducestress, anxiety and depression among surviving relatives[73]. Likewise, research on resilience is being used todesign interventions in other populations (i.e., helpingfamilies cope with a parent with a depressive disorder)and that may have applicability to supporting families inEOL care situations [74]. Focused attention on improv-ing the delivery of high quality EOL care in all inpatientsettings and on supporting families should be a goal forhealth system managers and administrators. The agingof the population along with increasing numbers ofpeople diagnosed with chronic life-limiting illnesses willnecessitate expansion or revision of existing services tomeet the needs for EOL care, at least into the foresee-able future. Home care is often cited as the current solu-tion to meet rising needs for palliative care [75, 76] andis reported to be the place where most people wouldprefer to be cared for and die [77–80]. However, withoutsubstantive investments in home-based palliative care itis unclear how this goal will be achieved or evenStajduhar et al. BMC Palliative Care  (2017) 16:59 Page 9 of 12sustained without adding significant cost to an alreadyfragile system [75, 81] especially without shifting thefinancial burden to families [82]. Further, while findingsnot surprisingly suggest that resilient people are morelikely to be satisfied with their care, there is a concurrentconcern that resiliency may mask the very real quality ofcare and systemic issues that prevent excellent EOL carefrom occurring in inpatient settings. Research has shownthat lack of knowledge of how to complain, low expecta-tions, feelings of gratitude, fear of retribution anddeference to health professionals may mask the prob-lems patients and families face in receiving quality care[83–85]. Indeed, analyses of qualitative data collected forthis study and published elsewhere [86] suggests thatfamily members sometimes rationalize negative careexperiences as an unavoidable reality within a con-strained health care system, excusing front-line staff andthe larger health care system from responsibility whenundesirable care occurs.LimitationsStudy findings should be considered in light of the factthat data are limited to one health region and the find-ings are undoubtedly influenced by the particular healthservice context and resource base available. In addition,there are small sample sizes within several of the settingsthough this is somewhat mitigated by a relatively goodresponse rate among settings. Only English speakingpeople were surveyed and in a health region whereEnglish is the dominant language. Perceptions of carequality may differ in bereaved family membes withculturally and linguistically different backgrounds.Despite these limitations, the study raises some import-ant questions in need of further exploration.ConclusionImproving care at the EOL is a key policy direction toimprove the quality of life for patients facing life-limitingconditions and their family members [87–89]. Under-standing how quality of care is perceived by familymembers across inpatient care settings is one way todetermine specific domains of care that are in need ofimprovement and to begin to address barriers to qualitycare. Although enhancing quality of EOL care is import-ant in all settings, this study adds to the increasing bodyof evidence suggesting a critical need to focus on improve-ments in acute care, and suggests that care provided inpalliative care units might also require attention.AbbreviationsANCOVA: Analysis of covariance; ANOVA: Analysis of variance;CANHELP: Canadian health care evaluation project; ECU: Extended care unit;EOL: End of life; ICU: Intensive care unit; MCU: Medical care unit;PCU: Palliative care unit; TRIG: Texas revised inventory of griefAcknowledgementsAt the time of this study Dr. Stajduhar was supported by investigator awardsfrom the Canadian Institutes of Health Research and the Michael SmithFoundation for Health Research. The authors gratefully acknowledgebereaved family members who participated in the study.aThe CANHELP questionnaire was designed to evaluate satisfaction with carefor older patients with life threatening illnesses, and their family members.Details can be found at the Canadian Reserachers at the End of Life Network(CARENET) website [90].FundingThis research was funded by the Michael Smith Foundation for HealthResearch (MSFHR). The funder had no role in study design; the collection,analysis and interpretation of data; the writing of the report; or the decisionto submit the article for publication.Availability of data and materialsThe datasets analysed during the current study are available from thecorresponding author upon reasonable request.Authors’ contributionsKS led all aspects of the study. KS, RC, DH, DA, DB and LN were involved inoverall study design. RS led data analysis with contributions from AG, KS, DA,RC and DH. All authors contributed to interpretation of findings. KS, RS, andAG drafted the initial manuscript and all other authors provided ongoingfeedback throughout manuscript preparation. All authors read and approvedthe final manuscript.Ethics approval and consent to participateEthical approval was granted by the joint University of Victoria andVancouver Island Health Authority Subcommittee for Health Research EthicsBoard. All participants provided written informed consent prior to datacollection.Consent for publicationNot applicable.Competing interestsThe authors declare that they have no competing interests.Publisher’s NoteSpringer Nature remains neutral with regard to jurisdictional claims inpublished maps and institutional affiliations.Author details1School of Nursing and Institute on Aging and Lifelong Health, University ofVictoria, PO Box 1700 STN CSC, Victoria, BC V8W 2Y2, Canada. 2School ofNursing, Trinity Western University, 7600 Glover Road, Langley, BC V2Y 1Y1,Canada. 3Oncology and Medicine, McGill University, Lady Davis ResearchInstitute, Jewish General Hospital, 845 Sherbrooke Street West, Montreal, QCH3A 0G4, Canada. 4Critical Care Medicine, Queen’s University, 76 StuartStreet, Kingston, ON K7L 2V7, Canada. 5College of Nursing, University ofSaskatchewan, 104 Clinic Place, Saskatoon, SASK S7N 2Z4, Canada. 6Instituteon Aging and Lifelong Health, University of Victoria, PO Box 1700 STN CSC,Victoria, BC V8W 2Y2, Canada. 7Palliative Care, Saanich Peninsula Hospital,Island Health, 2166 Mt. 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