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Original Research: Critical Care |

Factors Associated With Family Satisfaction With End-of-Life Care in the ICUFamily Satisfaction With ICU End-of-Life Care: A Systematic Review FREE TO VIEW

Laura J. Hinkle, MD; Gabriel T. Bosslet, MD, FCCP; Alexia M. Torke, MD
Author and Funding Information

From the Department of Medicine (Drs Hinkle and Torke), the Division of Pulmonary, Allergy, Critical Care, Occupational, and Sleep Medicine (Drs Hinkle and Bosslet), the Fairbanks Center for Medical Ethics, Indiana University Health (Drs Bosslet and Torke), and the Indiana University Center for Aging Research, Regenstrief Institute, Inc (Dr Torke), Indiana University School of Medicine, Indianapolis, IN.

CORRESPONDENCE TO: Laura J. Hinkle, MD, Department of Medicine, Division of Pulmonary, Allergy, Critical Care, Occupational, and Sleep Medicine, Indiana University School of Medicine, 541 Clinical Dr, CL 260, Indianapolis, IN 46202; e-mail: ljhinkle@iu.edu


FUNDING/SUPPORT: The authors have reported to CHEST that no funding was received for this study.

Reproduction of this article is prohibited without written permission from the American College of Chest Physicians. See online for more details.


Chest. 2015;147(1):82-93. doi:10.1378/chest.14-1098
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Published online

BACKGROUND:  Family satisfaction with end-of-life care in the ICU has not previously been systematically reviewed. Our objective was to perform a review, synthesizing published data identifying factors associated with family satisfaction with end-of-life care in critically ill adult populations.

METHODS:  The following electronic databases were searched: MEDLINE (Medical Literature Analysis and Retrieval System Online), MEDLINE Updated, EMBASE (Excerpta Medical Database), CINAHL (Cumulative Index to Nursing and Allied Health Literature), PsycInfo, and PubMed. Two authors reviewed retrieved titles and abstracts. Studies describing nonadult and non-ICU populations or not addressing end-of-life care, family satisfaction, or factors affecting satisfaction were excluded. The remaining articles underwent full review and data extraction by two authors. Quality was assessed using a checklist based on the recommendations of the Consolidated Standards for Reporting Trials group.

RESULTS:  The search yielded 1,072 articles, with 23 articles describing 14 studies meeting inclusion criteria. All studies obtained satisfaction data from family members via surveys and structured interviews. Specific communication strategies increasing satisfaction included: expressions of empathy, nonabandonment, and assurances of comfort and provision of written information. Additionally, support for shared decision-making, family presence at time of death, and specific patient-care measures such as extubation before death were associated with increased satisfaction.

CONCLUSIONS:  Good-quality communication, support for shared decision-making, and specific patient-care measures were associated with increased satisfaction with end-of-life care. Assessing the family’s desire to participate in shared decision-making may also be an important factor. Few interventions increased satisfaction. Future research is needed to further define optimal communication strategies, understand effective integration of palliative care into the ICU, and define significant score changes in survey instruments.

Figures in this Article

Although 90% of Americans desire to die at home, 20% experience end-of-life care in an ICU after life-prolonging therapies have failed.1 The significant impact of a loved one’s hospitalization on the physical, psychologic, and emotional health of the families of patients in the ICU is increasingly being recognized, with the Society of Critical Care Medicine proposing the term “post-intensive care syndrome—family” to describe it.2 Transitioning from care with curative intent to focusing on goals of comfort is often a difficult transition for families to make, and family members often suffer from anxiety, depression, posttraumatic stress disorder, and complicated grief.3 Recognition of this makes both patient and family-centered care a tremendously important goal for the ICU team. Although widespread interest in improving end-of-life care for patients in the ICU and their families exists, no well-defined quality indicators exist to measure its effectiveness and guide improvement.4

Most outcomes-based quality indicators used in ICU settings inadequately assess the quality of end-of-life care. The Institute of Medicine’s Committee on End-of-Life Care defines a good death as “One that is free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients’ and families’ wishes; and reasonably consistent with clinical, cultural, and ethical standards.”5 Assessing patient and family satisfaction with end-of-life care provides a way to determine whether these goals were attained. Directly measuring this in patients in the ICU is difficult because of their clinical status; thus, family (surrogate) satisfaction is used as a proxy measure.

A growing body of literature exploring end-of-life care in the ICU has investigated various measures and their associations with family satisfaction. However, we are unaware of prior systematic reviews examining aspects of care associated with satisfaction in this setting. To guide provision of quality end-of-life care and define areas where further work is needed, we performed a systematic review addressing the question: What factors are associated with family satisfaction with end-of-life care in the ICU?

Data Sources and Searches

This review includes studies describing factors associated with family satisfaction with end-of-life care in the ICU. “Satisfaction” is difficult to define and could encompass several domains, from patient care, to communication, to long-term well-being of family members. We defined family satisfaction to include positive ratings of elements of patient care and family support that are most important at the end of life. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) checklist for reporting systematic reviews was used during preparation of this manuscript.6 A search strategy (e-Appendix 1) was developed with assistance of a medical research librarian and used to search the following databases: Medical Literature Analysis and Retrieval System Online (MEDLINE), MEDLINE Updated, Excerpta Medical Database (EMBASE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycInfo, and PubMed. Each database was searched from inception through January 2013 for English-language articles reporting original data. Reference lists of included articles and personal journal collections were hand searched by the authors to identify other pertinent studies.

Study Selection

All retrieved titles and abstracts underwent independent review by two unblinded authors (L. J. H. and A. M. T.). Studies describing nonadult and non-ICU populations or not addressing end-of-life care, family satisfaction, or factors affecting satisfaction were excluded. Remaining articles underwent full review by two authors (L. J. H. and A. M. T). Disagreements were resolved by consensus.

Data Extraction and Quality Assessment

All included articles were abstracted using an instrument developed by the authors to sort for study design, key outcomes, and study problems or biases. The abstraction was performed independently by two authors (L. J. H. and A. M. T), and disagreements were resolved by consensus. Study quality was evaluated using a checklist adapted from recommendations of the Consolidated Standards for Reporting Trials (CONSORT) group.7

Our search identified 1,072 articles for review, with three additional articles identified by review of the authors’ personal collections (Fig 1). Review of titles and abstracts resulted in exclusion of 910 articles. The remaining 165 underwent full review, and 23 articles describing 14 studies met inclusion criteria. Most included studies were limited by the low survey response rates typical for these types of studies.8,9

Figure Jump LinkFigure 1 –  Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram of article inclusion. CINAHL = Cumulative Index to Nursing and Allied Health Literature; EMBASE = Excerpta Medical Database; MEDLINE = Medical Literature Analysis and Retrieval System Online.Grahic Jump Location

Sixteen articles were descriptive (Table 1).1025 Four articles described data from one larger study,18,21,22,25 and five reported preintervention baseline data collected as part of a multicenter randomized trial.1012,20,24 Six articles described unique studies, and the final article analyzed preintervention data from a pilot intervention study.23

Table Graphic Jump Location
TABLE 1 ]  Descriptive Study Quality Characteristics
a 

Studies were deemed to be of high quality if all of the following were present: sample size > 100, clear participant flow, survey response rate ≥ 40%, use of externally validated instrument, performance of multivariate analysis, and prespecified primary outcomes. If only multivariate analysis was missing, but all other criteria were met, the study was considered to be of moderate quality.

b 

Family surveys were returned for 45 of 51 (88%) of family conferences; however, only 51 of 111 (46%) eligible families agreed to participate in the study.

Seven articles evaluated interventions (Table 2),2632 and three of these were randomized controlled trials (RCTs). Interventions were palliative care consultation, quality improvement initiatives, family involvement with rounds, and efforts to improve family experience of withdrawal of life-support.

Table Graphic Jump Location
TABLE 2 ]  Intervention Study Quality Characteristics

RCT = randomized controlled trial.

a 

Studies were deemed to be of high quality if all of the following were present: clear participant flow, power calculation present, use of externally validated instrument, missing data < 60%, and prespecified primary outcomes. If the only missing criterion was power calculation, the study was determined to be of moderate quality.

Included studies obtained data from family members via surveys and structured interviews to determine degree of satisfaction and its association with study interventions or aspects of care and varied significantly in quality of design. Several core domains measuring satisfaction were identified, including direct care of the patient or family, quality of dying and death, decision-making, and communication.

Descriptive Studies
Quality of Dying and Death:

Four studies assessed factors affecting family perception of quality of dying and death. All studies used externally validated questionnaires, and little overlap existed in evaluated variables. Two high-quality articles11,20 and one of lower quality19 found variables significantly associated with increased Quality of Dying and Death (QODD) scores that are detailed in Table 3. The single common domain associated with increased QODD scores was support for the family of critically ill patients. Other variables identified in at least one of these studies and studies included elsewhere in this review were family presence at time of death, perceived nursing skill, decision-making support, and documentation of patient wishes regarding end-of-life care. Significantly lower scores were associated with CPR in the last hour of life. The final study surveyed a community in Japan15 and compared QODD scores of families whose loved one died in the ICU with vs without a cancer diagnosis. Families of patients with cancer scored significantly lower in prompt symptom control, perceived nursing skills and knowledge, and consideration of the family’s well-being by providers.

Table Graphic Jump Location
TABLE 3 ]  Outcomes of Descriptive Studies

FS-ICU = Family Satisfaction in the ICU; QODD = Quality of Dying and Death.

Communication:

The impact of communication quality on family satisfaction was addressed in four articles that described two studies of high quality. Three articles describe a multicenter study in which family conferences were recorded and a postconference questionnaire assessed family satisfaction with communication.18,21,22 Conferences were analyzed for proportion of family speech and number of empathic statements made by clinicians. Higher proportion of family speech vs clinician speech and increased empathic statements assuring nonabandonment, symptom control, and decision-making support were associated with higher satisfaction. There was no association between satisfaction and conference length. The fourth article analyzed baseline data from a pilot intervention study finding that families of ICU survivors were less satisfied with family-centered aspects of care, such as decision-making and communication, than families of nonsurvivors.23

Spiritual Care:

A high-quality study addressed associations between satisfaction and spiritual care. For families who rated satisfaction with spiritual care, higher scores correlated with greater overall satisfaction.24 Higher satisfaction with spiritual care was significantly associated with presence of a spiritual advisor in the last day of life.

Decision-making:

Two high-quality studies12,25 addressed satisfaction with decision-making, which was associated with discussion of spiritual needs and the patient’s end-of-life wishes during family conferences (increased satisfaction) and death in the setting of full support (decreased satisfaction). Additionally, satisfaction increased when physicians recommended withdrawal of life-prolonging interventions and when these interventions were withdrawn. White et al25 also evaluated incorporation of key elements of shared decision-making into family conferences. Satisfaction improved with increased shared decision-making, which occurred more often when physicians believed life-prolonging interventions should be withdrawn and with higher family educational level.

Withdrawal of Life-Prolonging Therapies:

Two studies evaluated processes of withdrawal of life-prolonging interventions associated with increased satisfaction. The first10 found that for patients with prolonged (> 8 days) ICU stays, longer periods of withdrawal increased family satisfaction, whereas the opposite was true for those with short ICU stays. In all patients, extubation before death resulted in higher satisfaction. A lower-quality instrument-development study performed at a single center in London sought to assess family satisfaction with the process of withdrawal of life-prolonging interventions.14 Greater overall satisfaction with care and with the process of withdrawal were significantly associated with the withdrawal process being well explained, proceeding as expected, and achieving of good symptom control.

Intervention Studies
Palliative Care Consultants:

Two studies assessed the impact of palliative care consultation on satisfaction (Table 4). The first was a very small study26 that noted no significant change in satisfaction in the intervention group. A second, larger study looked at satisfaction with care before and after the implementation of early palliative care consultation.30 This study identified significant improvements in overall satisfaction, involvement in decision-making, the dying process, and provider communication and perceived competence.

Table Graphic Jump Location
TABLE 4 ]  Outcomes of Intervention Studies

See Table 3 legend for expansion of abbreviations.

Quality-Improvement Initiative:

A quality-improvement initiative first piloted as a single-center before-after study27 and performed as a 15-center cluster RCT28 assessed the effectiveness of palliative care education, training of “local champions,” feedback, and system support. The pilot showed an insignificant trend toward improvement in QODD scores and significantly shorter ICU lengths of stay; however, these findings were not replicated in the RCT.

Nurse Liaison:

A single-center retrospective study performed an outcome analysis of a critical care nurse liaison program designed to assist the families of ICU nonsurvivors.32 The study was performed using a tool created by the authors lacking external validation. Family members were very satisfied with support provided by the nurse liaison, but evaluation of the effectiveness of this intervention was limited by lack of a control group.

Family Attendance at Rounds:

A single center before-after study evaluated purposefully including family members in ICU work rounds.29 This intervention resulted in significant improvement in satisfaction with communication and decision-making support for families of survivors. However, there was no change in satisfaction scores for families of nonsurvivors.

Communication Intervention:

A small RCT assessed the effectiveness of written information to prepare families for the dying process after withdrawal of life-prolonging interventions.31 The written message differed depending on expected duration of survival after withdrawal of support and presence or absence of an endotracheal tube, described observable physical signs, and assured families they could touch and talk to the patient. Families receiving the written communication were more satisfied with information given and knowing what to expect. A trend toward improved mood was also noted.

This systematic review of factors associated with family satisfaction with end-of-life care in the ICU reviewed 23 articles reporting data from 14 unique studies. Of these, three studies were RCTs, four were nonrandomized interventions, and seven were descriptive. There was wide variation in study quality and design, and little similarity in identified variables associated with satisfaction. However, recurrent themes provide guidance for improving end-of-life care and suggest directions for future research.

Well-designed descriptive studies demonstrated that satisfaction with communication significantly contributed to satisfaction with end-of-life care. Families reported greater satisfaction when allowed more time to speak during family conferences. Specific expressions of empathy by clinicians with an emphasis on decision-making support, nonabandonment, and good symptom control and when clinicians inquired about spiritual needs during the family conference and involved spiritual advisors when appropriate also increased satisfaction. If implemented, these findings could immediately impact families. Interestingly, these findings do not mandate longer family conferences, as no correlation was found between conference length and satisfaction.18

One descriptive study found increased satisfaction when physicians recommended withdrawal of life-prolonging interventions and when these interventions were withdrawn.12 There is evidence that difficult discussions about poor prognosis or death have both positive and negative effects on families,33 and clinicians may fear that bad news can diminish hope.34,35 It is an oversimplification to state that withdrawing life-prolonging interventions improves satisfaction with care. The increase may be related to greater satisfaction with the decision-making process, a sense of control over the situation, and having time to prepare for their loved one’s death.

In multiple studies, families who reported knowing what to expect during the withdrawal process had higher overall satisfaction scores. An interventional study provided written information describing the withdrawal process adequately communicated this information to families. Although small study size prohibits a definitive statement about the effectiveness of this intervention, other large studies have shown provision of written information to effectively communicate with families of patients in the ICU.36 Written communication may work especially well at the end of life, when overwhelmed family members may not retain verbal communication. Further research in this area to determine the optimal amount and detail of included information as well as the effectiveness of this message across a wide range of educational levels should be performed.

Shared decision-making is a prime area to impact overall satisfaction with care, but how to do this is unclear. In multiple descriptive studies, increased shared decision-making was associated with greater family satisfaction, and a study surveying family members of survivors and nonsurvivors reported all families desired to participate in shared decision-making.25,37 However, these findings cannot be assumed to be universally true. A large French study found one-half of family members did not want to participate in shared decision-making, and those who did experienced more posttraumatic stress syndrome, anxiety, and depression than their less-involved counterparts.38,39 In both the North American and European studies, families with less education were less involved in decision-making, but whether this was by choice or because clinicians believed they lacked ability to participate is unclear. Matching actual and preferred decision-making roles of families may be a factor affecting satisfaction in this domain.40 Recognizing this, clinicians should assess preferred decision-making roles, which families may not be able to voice themselves.

Specific patient-care measures associated with higher satisfaction scores in multiple descriptive studies included: extubation prior to death, good symptom control, absence of CPR in the last hour of life, and family presence at time of death. Having comfort care orders in place at the time of death was also associated with increased satisfaction, but none of the included studies evaluated whether having an institutional comfort care order set increased the likelihood of these orders being in place.

An intervention that would seemingly address many of the factors demonstrated to improve satisfaction is the timely involvement of palliative care specialists; however, our review of interventional studies addressing this provides mixed results about its effectiveness. One study demonstrated palliative care consultation increased satisfaction across multiple domains; a second showed no change, but was limited by very low enrollment. A well-designed palliative care quality-improvement study surprisingly demonstrated no impact on satisfaction. Potential reasons outlined in an editorial by Azoulay and Siegel41 included lack of patient or family-centered interventions, lack of established, significant score changes for the QODD instrument, and a follow-up period that may have been too short to detect a change. Although the data we presented regarding involvement of palliative care specialists was inconclusive, the included studies may have been inadequately powered to show a change. Studies not limited to the ICU setting have demonstrated that palliative care involvement leads to higher family satisfaction with care provided to both the patient and family.42,43 Many of the domains measured in these studies mirrored those discussed here, and it is possible that future, well-designed studies in the ICU setting would demonstrate increased family satisfaction with palliative care interventions. Further studies should be done in this area to identify optimal strategies for effective implementation of palliative care.

The included studies have significant limitations. First, there is no single, widely accepted, standardized satisfaction outcome measure. The majority of included studies experienced relatively low survey response rates, introducing the potential for self-selection bias. Some studies used surveys lacking external validation, which may limit validity of findings. None of the surveys had established significant score changes, hindering interpretation of the results. Finally, minorities were underrepresented in most studies,30 again limiting generalizability. Despite our efforts to capture all articles meeting our inclusion criteria, it is possible some were missed. Additionally, our search only identified published work, creating the possibility of publication bias.

Our ability to make conclusive recommendations regarding how to best impact family satisfaction with end-of-life care in the ICU is limited by a lack of robust, interventional studies on the topic. This review included primarily descriptive studies; thus, definitive statements of causality cannot be made. Our review found evidence from descriptive studies that good communication, including expressions of empathy and explanations of the withdrawal process, increased satisfaction. Whenever possible, the family’s desires regarding extubation before death should be addressed, and comfort care orders should be in place. Shared decision-making may also play a role. Very few interventions consistently improved satisfaction. Palliative care consultations and provision of written information show promise. Finally, future research is needed to translate promising communication strategies into interventions, to further demonstrate the impact of palliative care, and to define significant score changes in the Family Satisfaction in the ICU and QODD surveys.

Author contributions: L. J. H. and A. M. T. had full access to the study data and take responsibility for its integrity and analysis. L. J. H. and A. M. T. contributed to acquisition, analysis, and interpretation of data, and L. J. H., G. T. B., and A. M. T. contributed to study design and drafting of the manuscript.

Financial/nonfinancial disclosures: The authors have reported to CHEST that no potential conflicts of interest exist with any companies/organizations whose products or services may be discussed in this article.

Other contributions: We thank Thomas Emmett, MD, MLS, at the Indiana University School of Medicine Ruth Lilly Medical Library for his assistance in the design and execution of the database search strategy.

Additional information: The e-Appendix can be found in the Supplemental Materials section of the online article.

QODD

Quality of Dying and Death

RCT

randomized controlled trial

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Figures

Figure Jump LinkFigure 1 –  Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram of article inclusion. CINAHL = Cumulative Index to Nursing and Allied Health Literature; EMBASE = Excerpta Medical Database; MEDLINE = Medical Literature Analysis and Retrieval System Online.Grahic Jump Location

Tables

Table Graphic Jump Location
TABLE 1 ]  Descriptive Study Quality Characteristics
a 

Studies were deemed to be of high quality if all of the following were present: sample size > 100, clear participant flow, survey response rate ≥ 40%, use of externally validated instrument, performance of multivariate analysis, and prespecified primary outcomes. If only multivariate analysis was missing, but all other criteria were met, the study was considered to be of moderate quality.

b 

Family surveys were returned for 45 of 51 (88%) of family conferences; however, only 51 of 111 (46%) eligible families agreed to participate in the study.

Table Graphic Jump Location
TABLE 2 ]  Intervention Study Quality Characteristics

RCT = randomized controlled trial.

a 

Studies were deemed to be of high quality if all of the following were present: clear participant flow, power calculation present, use of externally validated instrument, missing data < 60%, and prespecified primary outcomes. If the only missing criterion was power calculation, the study was determined to be of moderate quality.

Table Graphic Jump Location
TABLE 3 ]  Outcomes of Descriptive Studies

FS-ICU = Family Satisfaction in the ICU; QODD = Quality of Dying and Death.

Table Graphic Jump Location
TABLE 4 ]  Outcomes of Intervention Studies

See Table 3 legend for expansion of abbreviations.

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