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(Chest. 2005;127:1775-1783.)
© 2005 American College of Chest Physicians

Quality of Dying and Death in Two Medical ICUs*

Perceptions of Family and Clinicians

Cari R. Levy, MD; E. Wesley Ely, MD, MPH, FCCP; Kate Payne, RN, JD; Ruth A. Engelberg, PhD; Donald L. Patrick, PhD, MSPH and J. Randall Curtis, MD, MPH, FCCP

* From the Division of Healthcare Policy and Research (Dr. Levy), University of Colorado Health Sciences Center, Aurora, CO; Department of Internal Medicine (Dr. Ely), Vanderbilt University School of Medicine, Nashville, TN; Department of Medicine (Dr. Payne), St. Thomas Hospital, Nashville, TN; and Division of Pulmonary and Critical Care (Drs. Engleberg, Patrick, and Curtis), University of Washington, Seattle, WA.

Correspondence to: Cari Levy, MD, University of Colorado Health Sciences Center, Division of Health Care Policy and Research, 13611 E Colfax Ave, Suite 100, Aurora, CO 80011; e-mail: cari.levy{at}uchsc.edu


   Abstract
TOP
 Abstract
Introduction
 Materials and Methods
 Results
 Discussion
 References
 
Objective: We compared perceptions of the quality of dying and death in the ICU across nurses, resident physicians, attending physicians, and family members. The aim was to obtain a surrogate assessment of the quality of the dying process and examine differences in the perceptions of different types of raters.

Design: Cross-sectional survey of family members and ICU clinicians conducted following the death of enrolled patients.

Setting: Two medical ICUs at academic tertiary care medical centers.

Patients: Patients dying in the ICU (n = 68).

Measurements and results: The previously validated Quality of Dying and Death (QODD) instrument was modified for use in the ICU. Within 48 h of the time of death, the nurse, resident, and attending physician caring for the patient were asked to complete the QODD. One month following the death, a designated family member was contacted and the QODD was administered on the telephone. Family members and attending physicians gave the most favorable ratings of death, while nurses and residents provided less favorable ratings. Significant differences between these groups were notable (p < 0.01) on items related to patient autonomy: maintaining dignity, being touched by loved ones, and the overall quality of death.

Conclusions: The perception of dying and death in the ICU varies considerably between nurses, attending physicians, resident physicians, and family members. Further studies are needed to explain these differences and determine the utility of the ICU QODD instrument for assessing and improving the quality of end-of-life care in the ICU.

Key Words: critical care • death • geriatrics • ICU • quality of care • quality of dying


   Introduction
TOP
 Abstract
 Introduction
Materials and Methods
 Results
 Discussion
 References
 
The ICU represents an important setting in which to study the dying process. First, surveys indicate that most Americans prefer to die at home, and families of dying patients state that they value the opportunity to provide terminal care at home.1234 Despite these expressed preferences, most Americans die in a hospital5 and, of patients who die in the hospital, approximately half are cared for in an ICU within 3 days of their death and one third spend at least 10 days in the ICU during their final hospitalization.6 Second, numerous studies7891011 have shown that most ICU deaths are preceded by withholding or withdrawing life support. Therefore, the ICU represents a setting in which death is frequently managed and negotiated between clinicians and family members.12 Finally, there is evidence that many patients dying in the ICU are dying with significant pain and other symptoms and without adequate communication between families and critical care clinicians.13141516 In order to advance the goal of improving the quality of care that we provide to patients who die during or shortly after a stay in the ICU, it is important to understand the quality of the dying experience from the perspectives of family members and critical care clinicians.

Elements of the dying experience that are important to patients and family are being actively studied by a number of investigators,17181920 who have characterized conceptual domains to measure quality of dying and death and have developed an instrument called the Quality of Dying and Death (QODD) to measure these conceptual domains. A preliminary validation study21 suggested that this instrument had good reliability and validity characteristics. The QODD has also been used in the ICU setting.2223 The current study used the QODD in the ICU to measure the quality of the dying experience of the patient as perceived by four groups of care providers including family members, nurses, residents, and attending physicians. The goal of this study was to describe and compare the ratings of the quality of death between family members, nurses, resident physicians, and attending physicians in the care of medical ICU patients who spent at least 48 h in the ICU.


   Materials and Methods
TOP
 Abstract
 Introduction
 Materials and Methods
Results
 Discussion
 References
 
Study Design and Subjects
This study was a cross-sectional survey of nurses, attending physicians, resident physicians, and family members of patients who died during a stay in the ICU. Consecutive patients were identified from the medical ICUs at Vanderbilt University Hospital and St. Thomas Hospital in Nashville, TN, and surveys were conducted following the death of each patient. The St. Thomas ICU is an open, 8-bed unit with many different community-based care providers, whereas the Vanderbilt ICU is a closed, 16-bed unit staffed by a limited number of academically based care providers. Both institutions encouraged involvement of nurses and resident physicians in family meetings, but attendance was variable due to competing responsibilities of patient care in the ICU. Additionally, both hospitals encouraged the use of "withdrawal protocols," a standardized order sheet designed to give a range of doses for medications needed to provide comfort at the end of life.

The institutional review boards at both hospitals approved this study, and written informed consent was obtained from family members at the time that patients were admitted to the ICU. The consent process for clinicians involved approaching the clinicians after the death of the patient and describing the purpose of the study. The clinicians were then asked if they would be willing to complete the questionnaire. Once completed, clinician questionnaires were returned to study personnel without individual identifiers and were therefore anonymous. Clinicians were all approached privately to minimize the influence of their responses or willingness to participate on one another.

Entry criteria for patients included any patient admitted to the adult medical ICU during the study interval from February to June of 2000 who died during their ICU stay. All deaths in the ICU were screened for eligibility. We excluded patients with an ICU length of stay before death of < 48 h (n = 46) in order to maximize the probability that all clinicians and family members had an opportunity to observe the patient’s experience in the ICU. If only one of the three clinicians (nurse, resident physician, or attending physician) was available to complete the QODD, the death was also excluded (n = 16). Clinicians were also able to decline completion of the QODD if they believed they had insufficient patient contact to accurately answer the questions (n = 7). Family members were identified from the hospital records as the emergency contact person. In cases where the family was not available to consent to a phone interview, only the clinicians (nurses, physicians, and residents) were asked to complete the QODD (n = 18).

Data Collection
Within 24 h of the time of death, the attending physician, nurse, and resident caring for the patient were identified and given a self-administered version of the QODD instrument. When a clinician was not familiar with the patient due to a recent shift or rotation change, the clinician who provided care during the time interval preceding the shift or rotation change was asked to complete the survey instrument. One month after the patient’s death, a family member was contacted and the QODD was administered by telephone interview. The time period between death and survey completion for clinicians was chosen to minimize the chance that clinicians would forget salient features of the quality of dying and death for the individual patients. The time period for family members was chosen in an effort to allow families some time to grieve, but not so much time that they may not recall details about the death.

The QODD Instrument
The 31-item QODD instrument was developed for completion after death by family members or clinicians. The family assessed QODD instrument has shown some evidence of validity in a study of 204 deaths in Missoula County and was shown to have good internal consistency (Cronbach {alpha} = 0.86) and construct validity, correlating significantly with measures of symptom burden, patient-clinician communication about treatment preferences, and quality of care.24 The ICU QODD instrument has also been validated in two studies.2223 The instrument demonstrates moderate interrater reliability when compared by two to four family members and high internal consistency (Cronbach {alpha} = 0.96) when used by ICU nurses. In the current investigation, we used two different versions of the QODD instrument, one for clinicians (nurse, attending physician, and resident physician) and another for family members. The family QODD has two parts to each question. Part A asks for the frequency with which an experience occurred. For some experiences (eg, having pain under control, breathing comfortably, being able to feed oneself), families used a 0 to 5 scale (0, none of the time; 1, a little bit of the time; 2, some of the time; 3, a good bit of the time; 4, most of the time; 5, all of the time). For other experiences (eg, having funeral arrangements in order, having a religious ceremony before dying, having discussed wishes for end-of-life care with doctor), families indicated either "yes" or "no."

Part B of each question asks the family to rate the quality of each experience on a 0 to 10 scale, with a score of 0 designating a "terrible experience," and 10 an "almost perfect experience." The clinician QODD contains only part B rating items. For use in the ICU, we report in this article an ICU QODD version with 21 items. The 10 deleted items were found to have poor relevance to the ICU setting, low completion rates, and lack of concordance between family members of patients dying in the ICU.22 The ICU QODD instrument is available from the authors (http://depts.washington.edu/eolcare).

The ICU QODD total score is based on the rating items used in part B. Scores range from 0 to 100 and are based on an arithmetic transformation of the mean score for all valid items. Valid responses were defined as a score of 0 to 10, which eliminated answers such as "do not know" and "does not apply." In order to maximize the inclusion of respondents and perform a per-patient analysis, total scores were based on a minimum of two valid responses for clinicians and five valid responses for family members.

Statistical Analysis
The primary analysis in this study was to compare the ICU QODD instrument item and total scores for family members, nurses, resident physicians, and attending physicians. To assess differences in scores on individual items across the types of raters, we compared the individual item scores using the Friedman test, followed by the Wilcoxon rank-sum test25 to determine which groups were significantly different. To adjust for multiple comparisons, the false-discovery rate procedure was used26; this procedure adjusts the p value to control for the expected number of comparisons with a p value < 0.05 by chance alone.

To assess differences in scores on the ICU QODD total score, we used two analytic approaches. First, as with the item analysis, we used the Friedman test, followed by the Wilcoxon rank-sum test, controlling for multiple comparisons using the false discovery rate. Second, we used Kendall {tau}-b27 to compare the concordance and discordance between pairs of raters. Kendall {tau}-b is a nonparametric measure of association based on the number of concordances and discordances in paired observations. Concordance occurs when the values for different raters of the same patient are higher than the comparable values for another patient. Discordance occurs when the value for one rater is higher for one patient compared to another, but this relationship is reversed when examining a second rater. Statistical significance was assessed at p < 0.05. Because the number of raters for some patients differed, the Friedman test was performed using only patients for whom all four raters completed questionnaires to ensure that this variable number of patients did not confound observed differences between groups.

We also provide percent of endorsements by family respondents for the items from part A of the ICU QODD instrument. These are "report" items in which the frequencies of experiences are evaluated by the family. These data are presented for descriptive purposes only as the items were not asked of other types of respondents.


   Results
TOP
 Abstract
 Introduction
 Materials and Methods
 Results
Discussion
 References
 
Demographics
During the study period, 141 patients were screened and 50 deaths were initially excluded due to ICU length of stay < 48 h or no resident physician on the team (Fig 1 ). Family members and/or an investigator were unavailable for consent for 38 deaths, and the primary physician requested that the family not be interviewed for 3 deaths. For 16 deaths, only one clinician was available to complete the questionnaire; in seven cases, two or more clinicians declined to complete the questionnaire because they believed they had insufficient contact with the patient before the death. As shown in Figure 1, the QODD was completed by a family member for 50 deaths (55% of eligible deaths), by at least two clinicians for 68 deaths (75% of eligible deaths), and by all four raters (attending, resident, nurse, and family) for 38 deaths. The majority of clinicians (63%) completing the QODD cared for patients ≤ 3 days prior to death, whereas > 90% of family members had known the patient for ≥ 14 years. The relationship of the family members to the patients was as follows: 26 spouse/partner (52%), 12 children (24%), 6 siblings (12%), 1 friend (2%), 1 parent (2%), and 1 cousin (2%).



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  		Figure 1. Flow chart displaying participant enrollment.

 
Male and female patients were represented equally, and the mean patient age was 64 years (Table 1 ). The average length of stay in the ICU was between 1 week and 2 weeks. Patients were admitted with a wide variety of diagnoses, although many patients ultimately experienced multiple organ failure syndrome (Table 1). The majority of patients received respiratory support with mechanical ventilation (89%) as well as BP support with either IV vasopressor agents or intra-aortic balloon counterpulsation (Table 1). During the course of hospitalization do-not-resuscitate (DNR) orders were written for most patients (n = 53, 78%), but the DNR order was frequently written < 24 h before death (Table 1). Twenty-one percent of patients (n = 14) in this cohort received cardiopulmonary resuscitation (CPR) prior to death. One patient without a DNR order did not have CPR performed as the result of a family discussion moments before death. Withdrawal of life-sustaining treatments, defined as removal of mechanical ventilation, weaning of vasopressors, cessation of enteral tube feeding, or termination of hemodialysis, occurred prior to death for 43 patients (63%).


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  		Table 1. Characteristics of Deceased Patients (n = 68)*

 
ICU QODD Instrument Scores
Mean scores and the results of comparisons using a Friedman analysis of variance are presented in Table 2 . Resident physicians and nurses provided the lowest scores on individual questions. Family and attending physicians provided higher scores than did nurses and resident physicians on 19 of the 20 items. Attending scores were significantly higher than resident scores for 17 of 20 questions, whereas attending scores were higher than family scores for only 1 of 20 questions. The most similar responses were provided by the pair of raters, resident vs nurse, which is not included in Table 2 because no significant differences were noted for any of the 20 questions. For all comparisons that were statistically significant, the same general pattern occurred with higher ratings for family members and attending physicians. This consistent pattern makes spurious findings due to multiple comparisons less likely. Because not all raters submitted questionnaires for all patients, there were patients who did not have responses from all four raters. Because the number of raters for patients differed, the Friedman analysis of variance was performed using only patients for whom all four raters completed the questionnaire (n = 38) to ensure that this variable number of patients did not confound observed differences between groups. This analysis was consistent with the initial analysis using all patients regardless of the number of raters (data not shown).


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  		Table 2. Comparison of Mean Scores for Part B, ICU QODD Instrument Questions Between the Four Groups of Raters*

 
The ICU QODD instrument total score varied significantly for the four groups of raters. Based on a sample size of 38, for whom there were all four respondent types, mean scores are as follows: family members, 77.7 ± 9.3; attending physicians, 81.5 ± 17.3; resident physicians, 67.8 ± 22.5; nurses, 66.9 ± 16.3 (± SD). These scores were significantly different (p < 0.001). Total scores from the two hospitals were not significantly different.

Concordance for the ICU QODD instrument total score between pairs of raters, using Kendall {tau}-b to account for chance agreement, was significant for attending physicians and nurses ({tau} = 0.20, p = 0.03) and for attending physicians and residents ({tau} = 0.20; p = 0.03) [Table 3 ]. Although the Kendall test was significant, the absolute value of the association was low to moderate, using Cohen standards for judging the strength of an association.28


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  		Table 3. Concordance Between QODD Ratings*

 
Findings for the part A frequency items completed by family members are presented in Table 4 . Family members perceived that pain was under control most or all of the time in 88% of patients. Seventy-nine percent of family members reported that their loved one maintained dignity and spent time with family all or most of the time. In contrast, approximately one in three family members indicated that their loved one breathed comfortably only some, a little bit, or none of the time, and one in three also reported that their loved one was at peace with dying only some, a little bit, or none of the time. When asked if dying was unnecessarily prolonged for a given patient, 9 of 50 family members (18%), 16 of 53 nurses (30%), and 10 of 50 resident physicians (20%) replied yes. No attending physician indicated that dying was prolonged unnecessarily for any patient.


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  		Table 4. Scores From Family Questionnaire*

 

   Discussion
TOP
 Abstract
 Introduction
 Materials and Methods
 Results
 Discussion
References
 
Our goal was to compare the perceptions of family members and clinicians who observe dying and death in the ICU. Our results indicate that attending physicians, resident physicians, nurses, and family members of ICU patients evaluate the quality of dying and death differently, as measured by answers to the ICU QODD instrument. Conceptually, variation between different raters can be viewed as being comprised of two components. First, variability may represent measurement error or "noise" in the instrument. Second, variability may represent "real differences" in ratings of the same patient’s death. These real differences in the reported quality of dying and death ratings can be divided into differences in the observations made because different raters were at the patient’s bedside at different times and for differing amounts of time witnessing different events during the ICU stay ("observed" differences), or differences in perceptions of the same events due to the raters’ prior experiences, training, or relationship with the patient ("perceived" differences). For example, the resident physician may have spent more time at the bedside than the attending physician and therefore had a greater likelihood of observing an episode of severe pain or other distressing symptom that then caused the resident to provide a lower ICU QODD instrument score. Similarly, perceived differences may reflect attitudes of residents completing residency. Studies293031 suggest that idealism decreases over the course of residency, residents are less satisfied when caring for patients with pain and psychiatric diagnoses, and psychosocial dysfunction is more common among resident physicians than attending physicians,32 which may also contribute to a pessimistic perception of the dying experience and translate to lower ICU QODD instrument scores.

The Kendall {tau}-b statistics indicates statistically significant concordance between some of the clinician respondents (the attending/nurse and resident/attending) on the ICU QODD instrument total score. Concordance in Table 3 indicates that when one rater provided a high score, the other rater in the pair also provided a high score. This methodology clarifies whether responses from different groups of raters are in a similar direction, even though the absolute values are different. For example, if one rater systematically provided lower scores while another rater systematically provided higher scores, this may result in a statistical difference between mean scores; however, concordance between the raters can still be high if the direction of the responses is similar for the two raters. Although there was statistically significant concordance between these raters, the magnitude of the concordance is low (≤ 0.20). We are not able to determine how much of the discordance seen between raters is due to the three different sources of variability (noise, observed differences, perceived differences), but future studies will need to assess this issue if we are to be able to use a measure of the quality of the dying experience to improve quality of care.

Family and Physician Assessments
We observed systematic differences in the scores on the individual items that demonstrated a pattern suggesting that attending physicians and family members rate the dying experience more positively than resident physicians or nurses. Prior research has also suggested that physicians provide a much more positive assessment of the quality of decision making concerning end-of-life care than nurses.3334 Having a sense of personal responsibility for a "good death" is one potential explanation for why overall scores were highest among family members and attending physicians. One explanation for higher ratings from attending physicians than resident physicians may be that attending physicians feel ultimately responsible for the care provided and believe they are providing appropriate management for their patients. In contrast, resident physicians may be aware of differences between the intent of the attending physician and the actual management of the patient. The finding that no attending physician believed that death was prolonged for any of their patients supports the hypothesis that attending physicians believed that the management was the most appropriate possible. Thus, high scores may be a consequence of these raters feeling personally invested in the quality of the dying process and consequently a desire that the process be considered an experience characterized by comfort and dignity. Alternatively, it is possible that attending physicians and family members may have had conversations with the dying patient that substantially altered their answers as compared to the other clinicians.

Nurse Assessments
Lower overall nurse scores are consistent with previous investigations3334 of critical care nurses perceptions of end-of-life care in the ICU. In one large national survey, most nurses (78%) thought that dying ICU patients received inadequate analgesia and 40% indicated that they acted against their conscience in caring for dying ICU patients.35 Moreover, prior studies36373839 have shown that nurses come to a decision that withdrawal of life support is indicated before other members of the care team. Critical care nurses express marked frustration about their limited role in the management of patients at the end of life, especially given their special understanding of these patients’ experiences,40 and end-of-life care in the ICU is a common source of interdisciplinary conflict for physicians and nurses.41 Hodde et al23 clearly documents the negative effects of CPR performed in the last 8 h of life. Thus, having DNR orders early during the ICU stay is important and serves as a marker of preparation for death. An assessment by critical care nurses of certain aspects of the dying experience may therefore be viewed through a perspective of frustration and conflict and may contribute to lower overall nurse scores as well as lower concordance between raters. Understanding these differences is an important area of future research.

The overall perception of the ICU stay was relatively favorable at these institutions. Family members reported that adequate time with loved ones occurred frequently in the ICU. The majority also indicated that their loved one maintained dignity and self-respect most or all of the time during their ICU stay. Pain was also described as under control most or all of the time by the majority of family members. Although some of these perceptions may be influenced by a desire to believe that their loved one died a dignified death and did not suffer, these responses, consistent with the work of other investigators, suggest a relatively high level of satisfaction with end-of-life care in the ICU.

Limitations
Our goal in this study was to assess the perspective of the families and clinician on the patient’s experience, and we cannot address the degree to which these perceptions reflect patients’ experiences. We have documented important differences between the perspectives of family members and clinicians. There are undoubtedly also important differences between the unmeasured perspective of the patient and those of both the family and clinicians. Family member assessments are often not representative of patient preferences,4243 and the absence of patient responses is an obvious limitation of this study. However, this is an unavoidable limitation for assessments of the dying experience after death. Furthermore, in the ICU setting, assessments directly from the patient are hampered by the inability to communicate with most patients at the time that decisions are made to withhold or withdraw life-sustaining treatments. Consequently, understanding the differences in perceptions by different potential raters is an important aspect to assessing the quality of the dying experience. An additional limitation, especially for family assessments in this study, includes the potential for recall bias. We assessed clinician perspective as soon after the death as possible to maximize the memory of the patient. However, for family members we waited 1 month to provide them time to grieve and under the assumption that family members are less likely to forget salient details.

This study is also limited by the sample size, and additional differences between raters may be seen in studies with a larger sample size. We compared the scores on the multiple items of the ICU QODD instrument, which raises the concern of multiple comparisons. However, for all comparisons that were statistically significant, the same general pattern occurred with higher ratings for family members and attending physicians. This pattern makes spurious findings due to multiple comparisons less likely.

Although ICUs from both a private community hospital and an academic tertiary care center were utilized, both are affiliated with a university and the patient population was predominantly white, both of which may limit generalizability of the findings. The generalizability of this study may also be limited by exclusion of patients who died within 48 h of ICU admission or for whom family members or clinicians were not available at the time of death. In addition, these findings included only medical ICU patients and this study was done in two hospitals, in one geographic location with one closed ICU staffed by intensivists, and the other with an open staff. Finally, we found a proportion of DNR orders and CPR prior to death that is similar to that seen in some studies,44454647 although different than observations in other studies.2048 Based on all these concerns, our results may not be generalizable to all institutions, locations, or practice models.

Summary
In summary, family members of those who died in an ICU had a relatively favorable perception of dying and death in the ICU, but important variability existed reflecting the perception by some that the quality of end-of-life care was poor. There was considerable discordance among the four groups of raters. Ratings were systematically lower for nurses and residents than for attending physicians and family members. Validation of the QODD instrument in the ICU setting and an exploration of the reasons for variation in perceptions of death among different care providers will require additional research. Efforts to measure and improve the quality of dying and death will depend on understanding these differences, clarifying reasons for these differing perceptions, and determining ways to account for such differences when assessing the quality of the dying process in the ICUs. Future clinical implications may involve eliciting perceptions regarding quality of care from all clinicians on daily ICU rounds. An understanding of each team members’ perception of the dying process may improve the clarity of goals of care and the overall plan of care to achieve uniformity in information passed on to patients and their families.


   Footnotes
 
Abbreviations: CPR = cardiopulmonary resuscitation; DNR = do not resuscitate; QODD = Quality of Dying and Death

This study was performed at Vanderbilt University Hospital and St. Thomas Hospital in Nashville, TN.

Dr. Levy is supported by the Hartford/Jahnigan Center of Excellence Award. Dr. Ely is a recipient of the AFAR Pharmacology in Aging Grant and the Paul Beeson Faculty Scholar Award from the Alliance for Aging Research. He is a recipient of a K23 from the National Institute of Health (AG01023–01A1) and is the Associate Director of Research for the Tennessee Valley Geriatric Research and Education Clinical Center. Drs. Curtis, Patrick, and Engelberg were supported by a grant from the Robert Wood Johnson Foundation for development and validation of the QODD (grant 036351).

Received for publication December 19, 2003. Accepted for publication November 21, 2004.


   References
TOP
 Abstract
 Introduction
 Materials and Methods
 Results
 Discussion
 References
 

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