Abstract
Rationale
Few studies have examined the role of patient age on family experiences of end-of-life care.
Objectives
To assess measurement characteristics of two family-assessed questionnaires across three patient age groups.
Methods
Four hundred and ninety-six patients who died in an intensive care unit (ICU) at a single hospital were identified and one family member per patient was sent two questionnaires: 1) Family Satisfaction in the ICU (FS-ICU); and 2) Quality of Dying and Death (QODD). Two hundred and seventy-five surveys were returned (55.4%). We analyzed three age groups: <35, 35–64, and ≥65 years. Differences were evaluated using χ2 tests to evaluate ceiling, floor, and missing responses; Kruskal-Wallis tests to compare median scores on items and total scores; and linear regression controlling for patient sex, race, diagnosis, and family-member sex, race, education, and relationship to provide adjusted comparisons of total and subscale scores.
Results
Measurement characteristics varied by age groups for both questionnaires. Missing values and floor endorsements were more common for the younger age groups for six items and one overall rating score. Ceiling endorsements were more common for the older group for 11 items. Fifteen items and four total scores were significantly higher in the older group.
Conclusions
The FS-ICU and QODD questionnaires performed differently across patient age groups. Assessments of family satisfaction and quality of dying and death were higher in the oldest group, particularly in the area of clinician-family communication. Studies of the dying experience of older adults may not generalize to patients of other ages, and study instruments should be validated among different age groups.
Introduction
Approximately 20% of deaths in the United States occur in an intensive care unit (ICU).1 Despite the frequency of occurrence, many studies suggest that end-of-life care in the ICU is inadequate.2,3,4 As a result, there has been an increasing focus on measuring and understanding the experience of dying patients and their families in critical care settings5,6,7,8 and on developing interventions to improve the quality of such care.9,10,11,12,13,14 Most tools that are available to assess end-of-life care have been developed and used for older participants.15,16 It is unclear whether results from these studies can be generalized to younger patients whose life and illness experiences may be quite different. Only a few studies have evaluated the association of patient age at the time of death with family assessments of end-of-life experiences.17,18
To compare differences in families' experiences of patients' deaths that may be attributed to patient age, we examined the measurement characteristics of two questionnaires, the Family Satisfaction in the Intensive Care Unit (FS-ICU) and the Quality of Dying and Death (QODD), by patient age. We asked two specific questions: 1) did the questionnaires display similar characteristics across three patient age groups as measured by ceiling, floor, and missing responses; and 2) did scores on the questionnaires vary by patient age group, suggesting that patient age differentially affected families' experiences?
Materials and Methods
Population and setting
Data for this study come from a prospective study that evaluated a palliative care intervention for ICU patients and their families.19 Study participants were recruited between July 2003 through October 2005 from Harborview Medical Center, a level 1 trauma hospital that had 65 critical care beds during the study. Eligible patients died in the ICU or within 30 hours of ICU discharge and had a minimum ICU stay of 6 hours. The University of Washington's institutional review board approved the study.
Measures and data collection
Survey packets were mailed to the family's home 4 to 6 weeks after the patient's death and included the FS-ICU and QODD questionnaires (see Appendices 1 and 2), and demographic questions about the patient and respondent. The FS-ICU is a reliable and valid self-report questionnaire measuring family satisfaction with ICU care. 15,20,21 It includes a total satisfaction score (24 items) and two subscale scores: satisfaction with care (14 items) and satisfaction with decision making (10 items).22 The QODD allows families to evaluate an adult patient's experiences at the end of life.16,23,24 A 22-item version has been used to evaluate the quality of ICU deaths.17,19,24,25,26,27,28 It also contains a single question assessing the overall quality of dying (QOD) that is scored separately. Higher scores on both questionnaires indicate better outcomes.
Statistical analysis
To test our hypothesis that differences would most likely be found between the youngest and oldest age groups, patients were stratified into three groups using Centers for Disease Control and Prevention death and mortality data to identify cutoffs29: <35, 35–64, and ≥65 years-old. Descriptive information was assessed using analysis of variance (ANOVA) for normally distributed variables (family respondent age), Kruskal-Wallis tests for nonnormally distributed variables (length of stay), and χ2 tests for categorical variables (patient sex, race/ethnicity, diagnosis, and service, as well as family-member sex, race/ethnicity, education, and relationship to patient). To evaluate questionnaire characteristics, we examined total, subscale, and item scores for percent missing, percent ceiling (highest), and percent floor (lowest) scores using χ2 tests. To evaluate whether patient age was associated with different family assessments of end-of-life care, we completed unadjusted and adjusted analyses. For the unadjusted analyses, we used Kruskal-Wallis tests to accommodate the nonnormally distributed responses. For the adjusted analyses, we used linear regression with robust standard errors, comparing FS-ICU and QODD total and subscores across the age groups adjusting for patient sex, patient race (white versus nonwhite), diagnosis (trauma versus neurologic versus all others), family-member sex, family-member race (white versus nonwhite), family-member education, and family-member relationship to the patient (parent, spouse, or other relationship). Because we viewed this examination as hypothesis generating, we chose a liberal significance level and set p≤0.05 for all tests despite the large number of comparisons.
Results
Four hundred and ninety-six families received mailed questionnaires and returned surveys for 275 patients (55.4%). Response rate did not vary by age group. Patients' demographic characteristics differed across age groups (Table 1). A larger proportion of the youngest group had trauma diagnoses, whereas the oldest group had more neurologic diagnoses. Family respondents for the youngest group were younger and more likely to be the patients' parents.
Table 1.
Characteristics of Study Population
| Age <35 (n=26) | Age 35–64 (n=113) | Age ≥65 (n=136) | P value | |
|---|---|---|---|---|
| Patient characteristics | ||||
| Age, years, mean (SD) | 25.38 (5.8) | 53.6 (6.8) | 76.9 (7.0) | |
| Female, no. (%) | 5 (19.2) | 46 (40.7) | 48 (35.3) | 0.117* |
| Nonwhite, no. (%) | 5 (20.0)a | 11 (10.2)b | 22 (17.1)c | 0.233* |
| LOS, days, median (IQR) | 5.0 (2.0, 8.8) | 5.0 (2.0, 12.0) | 5.0 (2.0, 12.0) | 0.815** |
| ICU LOS, days, median (IQR) | 3.9 (2.2, 6.9) | 4.8 (1.8, 9.7) | 3.2 (1.5, 9.9) | 0.563** |
| Diagnosis, no. (%) | <0.001* | |||
| Cardiovascular | 0 | 9 (8.0) | 9 (6.6) | |
| Infectious | 2 (7.7) | 18 (16.1) | 6 (4.4) | |
| Respiratory | 0 | 4 (3.6) | 12 (8.8) | |
| Gastrointestinal and hepatic | 1 (3.8) | 13 (11.6) | 7 (5.1) | |
| Neurologic | 4 (15.4) | 34 (30.4) | 65 (47.8) | |
| Trauma | 14 (53.8) | 20 (17.9) | 27 (19.9) | |
| Cancer | 0 | 3 (2.7) | 1 (0.7) | |
| Miscellaneous | 5 (19.2) | 11 (9.8) | 9 (6.6) | |
| Service, no. (%) | 0.045* | |||
| Medical ICU | 5 (19.2) | 40 (35.4) | 36 (26.5) | |
| Cardiac care | 0 | 7 (6.2) | 7 (5.1) | |
| Neurology | 1 (3.8) | 11 (9.7) | 21 (15.4) | |
| Neurosurgery | 7 (26.9) | 30 (26.5) | 41 (30.1) | |
| General surgery/Trauma | 12 (46.2) | 20 (17.7) | 28 (20.6) | |
| Burns/Plastics/Peds | 1 (3.8) | 5 (4.4) | 1 (0.7) | |
| Other | 0 | 0 | 2 (1.5) | |
| Family characteristics | ||||
| Age, years, mean (SD) | 49.0 (10.1) | 52.5 (12.8)d | 61.22 (13.6)e | <0.001*** |
| Female, no. (%) | 20 (76.9) | 71 (63.4)f | 88 (65.7)g | 0.423* |
| Nonwhite, no. (%) | 7 (26.9) | 16 (14.2) | 26 (19.7) | 0.249* |
| Level of education, no. (%) | h | 0.776* | ||
| High school or Less | 6 (23.1) | 29 (25.7) | 35 (26.1) | |
| Some college | 11 (42.3) | 51 (45.1) | 58 (43.3) | |
| 4-Year college degree | 4 (15.4) | 16 (14.2) | 27 (20.1) | |
| Graduate or Professional | 5 (19.2) | 17 (15.0) | 14 (10.4) | |
| Relationship to patient, no. (%) | i | <0.001* | ||
| Parent | 20 (76.9) | 11 (9.7) | 0 | |
| Spouse/Partner | 2 (7.7) | 55 (48.7) | 64 (47.4) | |
| Child | 0 | 18 (15.9) | 55 (40.7) | |
| Sibling/Other relative/Friend | 4 (15.4) | 29 (25.7) | 16 (11.9) | |
IQR, interquartile range; SD, standard deviation; ICU, intensive care unit; LOS, length of stay.
: response (n) differs from total (n): a=25, b=108, c=129, d=112, e=134, f=112, g=134, h=134, i=135.
χ2, **Kruskal-Wallis, ***ANOVA. P values set in bold are those P values that reach significance (p<0.05).
Several significant differences were found in the characteristics of the FS-ICU by patient age (Table 2). The middle age group endorsed fewer ceiling scores for the decision-making subscale. The youngest group endorsed more floor scores for the item, “ICU staff care of patient” and the middle age group endorsed more floor scores for the item, “time for questions.” The oldest group endorsed more ceiling scores on five items. The youngest and oldest groups endorsed more ceiling scores for “time for questions” than the middle group.
Table 2.
Measurement Characteristics for FS-ICU, QODD Total/Subscale Scores, and Individual Items That Significantly Differ by Age
| Age <35 (n=26) | Age 35–64 (n=113) | Age ≥65 (n=136) | P value* | |
|---|---|---|---|---|
| Total and subscale scores | ||||
| Missing % (n) | ||||
| FS-ICU total | 3.8 (1) | 2.7 (3) | 1.5 (2) | 0.678 |
| FS-ICU care | 3.8 (1) | 2.7 (3) | 1.5 (2) | 0.678 |
| FS-ICU DM | 3.8 (1) | 1.8 (2) | 1.5 (2) | 0.707 |
| QODD | 7.7 (2) | 2.7 (3) | 0.7 (1) | 0.076 |
| QOD | 11.5 (3) | 4.4 (5) | 4.4 (6) | 0.291 |
| Floor % (n) | ||||
| FS-ICU total | 0 (0) | 0 (0) | 0 (0) | – |
| FS-ICU care | 0 (0) | 0 (0) | 0 (0) | – |
| FS-ICU DM | 0 (0) | 0 (0) | 0 (0) | – |
| QODD | 4.2 (1) | 2.7 (3) | 0.7 (1) | 0.353 |
| QOD | 13.0 (3) | 7.4 (8) | 1.5 (2) | 0.021 |
| Ceiling % (n) | ||||
| FS-ICU total | 4.0 (1) | 2.7 (3) | 4.5 (6) | 0.770 |
| FS-ICU care | 8.0 (2) | 7.3 (8) | 14.9 (20) | 0.146 |
| FS-ICU DM | 20.0 (5) | 6.3 (7) | 17.2 (23) | 0.023 |
| QODD | 8.3 (2) | 5.5 (6) | 7.4 (10) | 0.795 |
| QOD | 17.4 (4) | 25.0 (27) | 36.2 (47) | 0.068 |
| Individual items | ||||
| FS-ICU missing % (n) | ||||
| None | ||||
| FS-ICU floor % (n) | ||||
| ICU staff care of patient | 7.7 (2) | 0.0 (0) | 0.0 (0) | <0.001 |
| Time for questions | 4.0 (1) | 22.4 (24) | 3.8 (5) | <0.001 |
| FS-ICU ceiling % (n) | ||||
| Teamwork of ICU staff | 48.0 (12) | 55.6 (60) | 70.1 (94) | 0.021 |
| RN communication | 76.9 (20) | 61.3 (68) | 77.0 (104) | 0.020 |
| Competence of ICU MD | 65.4 (17) | 51.4 (57) | 70.5 (93) | 0.009 |
| MD communication | 36.0 (9) | 35.1 (39) | 53.7 (72) | 0.010 |
| Completeness of information | 52.0 (13) | 46.4 (52) | 63.9 (85) | 0.022 |
| Time for questions | 96.0 (24) | 77.6 (83) | 96.2 (125) | <0.001 |
| QODD missing % (n) | ||||
| Peace with dying | 65.4 (17) | 48.7 (55) | 37.5 (51) | 0.018 |
| Fear of dying | 61.5 (16) | 54.0 (61) | 39.0 (53) | 0.019 |
| Funeral arrangements | 30.8 (8) | 22.1 (25) | 12.5 (17) | 0.032 |
| QODD Floor % (n) | ||||
| Funeral arrangements | 27.8 (5) | 15.9 (14) | 7.6 (9) | 0.024 |
| QODD Ceiling % (n) | ||||
| Time spent with family | 28.6 (6) | 27.4 (26) | 44.0 (51) | 0.034 |
| Costs taken care of | 20.0 (3) | 26.4 (19) | 45.7 (43) | 0.015 |
| Use of dialysis | 35.7 (5) | 15.1 (8) | 41.9 (31) | 0.005 |
| Funeral arrangements | 5.6 (1) | 13.6 (12) | 30.3 (36) | 0.004 |
| Discussion of end-of-life care with MD | 6.3 (1) | 14.7 (11) | 35.3 (36) | 0.001 |
FS-ICU, Family Satisfaction in the Intensive Care Unit; QODD, Quality of Dying and Death; Care, Satisfaction with Care Subscale; DM, Satisfaction with Decision Making Subscale; QOD, Quality of Dying single item score. For complete phrasing of individual questions, please see Appendices 1 and 2.
χ2 tests: missing vs. all others; floor vs. all others; ceiling vs. all others. P values set in bold are those P values that reach significance (p<0.05).
Significant differences were also found for the characteristics of the QODD (Table 2). For the single-item QOD the oldest group endorsed fewer floor scores. For the individual QODD questions, three items differed by missing responses (all fewer in the oldest group), one item differed by floor scores (fewer in the oldest group), and five items differed by ceiling scores (all more in the oldest group).
In the unadjusted analyses of questionnaire items, nine of the FS-ICU items and six of the QODD items differed by age group with the highest scores associated with the oldest group. For the total and subscale scores, the FS-ICU total and decision-making subscale scores were higher for the oldest group. Similarly, the QODD total and the QOD-single-item scores were higher for the oldest group. These findings for the total and subscale scores were supported in the adjusted analyses except for the QODD total score. Additionally, in the adjusted analyses, the FS-ICU satisfaction with care subscale score was higher for the oldest group (Table 3).
Table 3.
Descriptive Statistics for FS-ICU, QODD Total/Subscale Scores, and Individual Items That Significantly Differ by Age
| Age <35 (n=26) | Age 35–64 (n=113) | Age ≥65 (n=136) | Unadjusted P value* | Adjusted P value** | |
|---|---|---|---|---|---|
| Median (IQR) | |||||
| FS-ICU total | 83.3 (74.5, 94.7) | 83.9 (69.4, 93.8) | 88.0 (77.4, 94.8) | 0.031 | 0.006 |
| FS-ICU care | 87.5 (74.1, 96.3) | 87.5 (69.6, 94.6) | 89.3 (80.4, 96.2) | 0.070 | 0.010 |
| FS-ICU DM | 80.0 (71.3, 96.3) | 80.0 (62.5, 95.0) | 87.5 (75.0, 97.3) | 0.010 | 0.001 |
| QODD | 57.6 (50.8, 78.8) | 65.6 (45.2, 82.7) | 72.9 (54.8, 89.5) | 0.049 | 0.075 |
| QOD | 8 (5, 9) | 8 (5, 9.75) | 9 (7, 10) | 0.019 | 0.004 |
| FS-ICU %excellent (n) | |||||
| Teamwork of ICU staff | 48.0 (12) | 55.6 (60) | 70.1 (94) | 0.009 | |
| ICU staff care of family | 61.5 (16) | 63.6 (68) | 76.1 (102) | 0.032 | |
| RN communication | 76.9 (20) | 61.3 (68) | 77.0 (104) | 0.018 | |
| Competence of ICU MD | 65.4 (17) | 51.4 (57) | 70.5 (93) | 0.008 | |
| ICU waiting room | 12.0 (3) | 8.7 (9) | 18.8 (24) | 0.031 | |
| MD communication | 36.0 (9) | 35.1 (39) | 53.7 (72) | 0.001 | |
| Completeness of information | 52.0 (13) | 46.4 (52) | 63.9 (85) | 0.026 | |
| Consistency of information | 38.5 (10) | 44.5 (49) | 57.5 (77) | 0.017 | |
| Time for questions | 96.0 (24) | 77.6 (83) | 96.2 (125) | <0.001 | |
| QODD median (IQR) | |||||
| Time spent with family | 8.0 (6.5, 10) | 8.0 (3, 10) | 9.0 (6, 10) | 0.020 | |
| Costs taken care of | 7.0 (2, 9) | 8.0 (4, 10) | 9.0 (7, 10) | 0.003 | |
| Goodbye to loved ones | 2.0 (0, 6.5) | 1.0 (0, 5) | 5.0 (0, 9) | 0.050 | |
| Use of dialysis | 6.5 (5, 10) | 5.0 (5, 9) | 8.5 (5, 10) | 0.030 | |
| Funeral arrangements | 4.0 (0, 5.5) | 5.0 (2, 8) | 8.0 (5, 10) | <0.001 | |
| Discussion of end-of-life care with MD | 5.0 (1, 8) | 5.0 (3, 8) | 8.5 (4.75, 10) | <0.001 | |
FSICU, Family Satisfaction in the Intensive Care Unit; QODD, Quality of Dying and Death; Care, Satisfaction with Care Subscale; DM, Satisfaction with Decision Making Subscale; QOD, Quality of Dying single item score; IQR, interquartile range; SD, standard deviation; LOS, length of stay. For complete phrasing of individual questions, please see see Appendix 1 and 2.
Kruskal-Wallis analysis.
Scores are adjusted for patient sex, patient race (white vs. nonwhite), patient diagnosis (trauma vs. neurologic vs. all others), family-member sex, family-member race (white vs. nonwhite), family-member education, and family-member relationship to patient (parent vs. all others, spouse vs. all others) using linear regression with robust estimators.
P values set in bold are those P values that reach significance (p<0.05).
Discussion
In this study, we found that both of these questionnaires, whether measuring satisfaction with end-of-life care or quality of dying and death, performed differently depending on patient age. First, a number of measurement characteristics that are important for construct validity30 varied by age. In general, the oldest group had fewer missing responses, fewer percent floor responses, and more percent ceiling responses.
Second, families of patients from different age groups provided significantly different assessments of end-of-life experiences. Families of the oldest patients reported higher levels of overall satisfaction with the ICU care and they also perceived that their loved one had a higher-quality dying and death experience. These results persisted after adjusting for patient sex, race, and diagnosis as well as the family-member's sex, race, education, and relationship to the patient. The nine FS-ICU items that were rated as higher in the oldest group suggest that families of the oldest patients were more satisfied with diverse aspects of ICU care but especially those related to clinician-family communication. The six QODD items that were rated significantly higher in the oldest group fall into the domains of preparation and connectedness.31 Both of these domains are focused on communication (clinician-family, patient-family, or intra-family). No items differed by age in the domains of symptom control or transcendence.
This study has several important limitations. First, many patients had a trauma diagnosis; their experiences may be different from those of patients dying from other causes. Second, the small sample size of the youngest group (n=26) may reduce the study's power to find differences among age groups. Third, it is possible that patient age is a proxy for other important factors that covary with patient age (e.g., parental roles and experiences and clinician communication style) and which we have not accounted for in these analyses. Finally, this study cannot differentiate true differences in quality of care from questionnaire performance. Our findings should be regarded as hypothesis generating, requiring future studies to further explore these questions.
Most studies aimed at measuring family satisfaction with ICU care and family perceptions of their loved one's dying and death experience use questionnaires developed with older patients and enroll patients who would fall into our oldest group. Our study suggests that such questionnaires may not measure the patient and family end-of-life experiences equivalently across a range of adult patient ages, and further research is needed to improve these measures. Additionally, end-of-life experiences may differ by patient age; therefore, findings in previous studies may not generalize to younger patient age groups. Our study suggests a central role of communication in explaining many differences associated with patient age. Younger patients and their families may need more support around end-of-life preparation and discussion of treatment preferences. Finally, if satisfaction with care and quality of dying is lower for younger patients and their families, they may be at higher risk for stress disorders.18,32 Improving our understanding of the areas in which we provide lower-quality end-of-life care, such as for younger patients, may help us tailor our interventions and improve our care of patients and their families.
Appendices
Appendix 1.
Items in the Family Satisfaction in the ICU (FS-ICU) survey
| Item | |
| 1 | Care: courtesy, respect, and compassion by staff toward patient |
| 2 | Care: management of pain |
| 3 | Care: management of breathlessness |
| 4 | Care: management of agitation |
| 5 | Care: how well staff considered family needs |
| 6 | Care: how well staff provided emotional support toward family |
| 7 | Care: coordination and teamwork by staff |
| 8 | Care: courtesy, respect, and compassion by staff toward family |
| 9 | Care: skill and competence of nurses |
| 10 | Care: communication by nurses |
| 11 | Care: skill and competence of doctors |
| 12 | Care: atmosphere of the ICU |
| 13 | Care: atmosphere of the ICU waiting room |
| 14 | Care: satisfaction with level or amount of care patient received |
| 15 | Decision making: frequency of communication by doctors |
| 16 | Decision making: willingness of staff to answer questions |
| 17 | Decision making: staff provided understandable explanations |
| 18 | Decision making: honesty of information provided about patient's condition |
| 19 | Decision making: completeness of information about what was happening |
| 20 | Decision making: consistency of information about patient's condition |
| 21 | Decision making: feel included in the decision-making process |
| 22 | Decision making: feel supported during the decision-making process |
| 23 | Decision making: feel control over the care of the patient |
| 24 | Decision making: adequate time to address concerns and answer questions |
Appendix 2.
Items in the Quality of Dying and Death (QODD) survey
| Item | |
| 1 | How would you rate your loved one's pain control? |
| 2 | How would you rate loved one's control over what was going on around him/her? |
| 3 | How would you rate your loved one's ablility to feed her/himself? |
| 4 | How would you rate your loved one's comfort with breathing? |
| 5 | How would you rate your loved one's peace with dying? |
| 6 | How would you rate your loved one's fear of dying? |
| 7 | How would you rate how often your loved one laughed and smiled? |
| 8 | How would you rate your loved one's ability to keep his/her dignity and self-respect? |
| 9 | How would you rate your loved one's time spent with family or friends? |
| 10 | How would you rate your loved one's time spent alone? |
| 11 | How would you rate your loved one's experience of being touched or hugged by his/her loved ones? |
| 12 | How would you rate your loved one's health care costs being taken care of? |
| 13 | How would you rate your loved one's chance to say goodbye to loved ones? |
| 14 | How would you rate your loved one's chance to clear up any bad feelings with others? |
| 15 | How would you rate your loved one's opportunity for visits from a religious or spiritual advisor? |
| 16 | How would you rate your loved one's opportunity for a spiritual service or ceremony before his/her death? |
| 17 | How would you rate your loved one's use or non-use of a mechanical ventilator to breath for him/her? |
| 18 | How would you rate your loved one's use or non-use of dialysis for his/her kidneys? |
| 19 | How would you rate your loved one's opportunity to have his/her funeral arrangements in order? |
| 20 | How would you rate your loved one's opportunity to discuss his/ her wishes for end-of -ife care? |
| 21 | How would you rate the opportunity for someone to be present at the moment of your loved one's death? |
| 22 | How would you rate your loved one's state of consciousness at the moment of death? |
| 23 | Overall, how would you rate the quality of your loved one's dying? |
Acknowledgments
This project was funded by a grant from the National Institute of Nursing Research (R01NR05226) and a grant from the Robert Wood Johnson Foundation.
Author Disclosure Statement
No competing financial interests exist.
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