Abstract
Importance
Efforts to improve end-of-life care have focused primarily on cancer patients. High quality end-of-life care is also critical for patients with other illnesses.
Objective
Compare patterns of end-of-life care and family-rated quality of care for patients dying with different serious illnesses.
Design
Retrospective cross-sectional study.
Setting
All 146 inpatient facilities within the Veteran Affairs (VA) health system.
Participants
Patients who died in VA inpatient facilities between October 2009 and September 2012 with clinical diagnoses categorized as: end-stage renal disease (ESRD), cancer, cardiopulmonary failure (congestive heart failure/chronic obstructive pulmonary disease), dementia, frailty, or other conditions.
Main Measures
Palliative care consultation; do-not-resuscitate order; death in inpatient hospice; death in the intensive care unit (ICU); family-reported end-of-life care quality.
Results
Among 57,728 decedents, approximately half of patients with ESRD, cardiopulmonary failure or frailty received palliative care consultations (adjusted proportions 50.4%, 46.7%, and 43.7%, respectively) versus 73.5% of cancer patients and 61.4% of dementia patients (P<.001). Approximately one-third of patients with ESRD, cardiopulmonary failure, or frailty (adjusted proportions 32.3%, 34.1%, and 35.2% respectively) died in the ICU, more than double the rates among cancer and dementia patients (13.4% and 8.9%, respectively) (P<.001). Rates of excellent end-of-life care quality reported by 34,005 decedents’ families were similar for cancer and dementia patients (adjusted proportions 59.2% and 59.3% [P=.61]), but lower for patients with ESRD, cardiopulmonary failure, or frailty (54.8%, 54.8%, and 53.7%, respectively; all P≤.015 vs. cancer). This quality advantage was mediated by palliative care consultation, setting of death, and do-not-resuscitate order: adjustment for these variables rendered the relationship between diagnosis and overall end-of-life care quality non-significant (P=.87)
Conclusions and Relevance
Family-reported quality of end-of-life care was significantly better for cancer and dementia patients than for patients with ESRD, cardiopulmonary failure, or frailty, largely due to higher rates of palliative care consultation and do-not-resuscitate orders and fewer ICU deaths among cancer and dementia patients. Increasing access to palliative care and goals of care discussions that address code status and preferred setting of death, particularly for patients with end-organ failure and frailty, may improve the overall quality of end-of-life care for Americans dying of these illnesses.
INTRODUCTION
Most individuals in the United States die of conditions other than cancer.1 Yet, historically, efforts to improve end-of-life care have focused primarily on cancer.2,3 More recently, there has been increasing recognition that high quality end-of-life care is also critical for patients with serious illnesses other than cancer, particularly with the aging of the U.S. population.
Few studies have compared patterns of end-of-life care and quality across different serious illnesses, and these studies have generally examined only a small number of diagnoses.4,5 Researchers have found differences in care between certain diagnoses–-such as higher rates of mechanical ventilation among patients with chronic obstructive pulmonary disease (COPD) compared to cancer patients5—but much is still unknown. Moreover, previous work has typically been limited to administrative or chart review data,4–7 which do not include patient or family perspectives. To address these important questions, we compare quality of care for decedents across multiple diagnoses, the first study to do so, to our knowledge. Furthermore, our analysis takes advantage of a unique survey of bereaved family members. Such surveys can play a critical role in assessing end-of-life care quality.8–14 The aim of this study was to compare measures of care at the end of life and family-reported quality of care for patients with end-stage renal disease (ESRD), cancer, cardiopulmonary failure (congestive heart failure [CHF]/COPD), dementia, and frailty.
METHODS
Data Sources and Procedures
Our data were from the Veteran Affairs (VA) Performance Reporting and Outcomes Measurement to Improve the Standard of Care at the End-of-life (PROMISE) Center. We used two data sources from PROMISE: chart review and the Bereaved Family Survey.
Chart review data for nearly every patient who died in a VA inpatient facility, including acute care, long-term care, and inpatient hospice were abstracted by hand prior to October 1, 2012. Subsequently, except for setting of death, which was still abstracted by hand, data were derived from the VA’s Corporate Data Warehouse that integrates databases containing clinical and administrative information.15,16 The only ineligible Veterans were those in a VA inpatient facility less than 24 hours in the last month of life or who died by suicide (< 4% of all deaths).
The PROMISE Center also surveys patients’ families about the quality of care that their loved ones received in the last month of life using the Bereaved Family Survey. Human subjects approval was obtained from the Philadelphia VAMC institutional review board.
Study Cohort
Among 58,408 patients who died in one of the 146 VA facilities nationwide between October 2009 and September 2012, 655 (1.1%) patients were ineligible for our analyses due to missing ICD-9 data. Thus, chart review analyses included 57,753 patients. Of these, 4,331 had incorrect contact information for their next-of-kin. This left 53,422 next-of-kin eligible for the Bereaved Family Survey. Of those, 34,015 completed the survey (response rate 64%). Survey weights (described below) could not be calculated for 10 respondents due to incomplete covariate data, producing a final survey cohort of 34,005 (see eMethods).
Outcomes
From chart review, we obtained several measures of care at the end of life that have been associated with high-quality end-of-life care: 1) palliative care consultation in the last 90 days of life;10,17 2) do-not-resuscitate order at the time of death, which may reflect a “goals of care” discussion;13,18 and 3) death in a hospice/palliative care unit.19,20 We also examined one measure, death in the intensive care unit (ICU), associated with worse family-reported quality.21–25
Using the Bereaved Family Survey, we examined family members’ assessment of end-of-life care quality.26 Our primary measure was the family’s global rating of quality on a 5-point Likert scale, which we dichotomized as “excellent” versus all other categories. In a sensitivity analysis comparing all five ratings ranging from “poor” to “excellent” using ordered logistic regression, results were similar (not presented).
We also examined four questions about provider communication: “providers always listened to concerns”; “providers always provided desired medical treatment”; “providers always kept family informed”; and “providers always gave enough emotional support”, and two questions about the presence and frequency of pain.
Independent Variables
Our independent variable of interest was the patient’s serious illness diagnosis, based on inpatient admissions in the last year of life, which likely reflects their most serious medical conditions near death. We used inpatient diagnoses rather than death certificate diagnoses since past research found the latter unreliable.27,28 Each inpatient admission was associated with one primary diagnosis and potentially secondary diagnoses. Patients could have admissions in addition to their terminal admission, each with a primary diagnosis. As in prior studies, we categorized patients into six mutually-exclusive diagnosis categories: (1) end-stage renal disease (ESRD), (2) cancer, (3) cardiopulmonary failure (CHF or COPD), (4) dementia, (5) frailty, and (6) other.6,7,29–31 Our approach was the following (see eMethods): 1) Decedents with one or more primary diagnoses for ESRD, cancer, cardiopulmonary failure, dementia or frailty were categorized using the above hierarchy. 2) For those with none of the five primary diagnoses in the last year of life, secondary diagnoses were examined, and decedents were categorized using the same hierarchy.6 As in previous work, frailty included Parkinson’s disease, stroke, hip fracture, delirium, pneumonia, incontinence, dehydration, leg cellulitis, or syncope. Cardiopulmonary failure included CHF or COPD.6
We conducted three sensitivity analyses of diagnosis assignment. In the first, we categorized decedents using only hospitalizations within the last month of life. In the second, we divided cardiopulmonary failure into CHF and COPD as separate diagnoses. In the third, we combined frailty and “other” diagnosis categories.
Covariates
Age, gender, race, comorbidity, and relationship of next-of-kin came from the VA’s Corporate Data Warehouse. Comorbidity was measured using the Deyo adaptation of the Charlson Comorbidity Index32 applied to inpatient ICD-9 codes (see eMethods). The unweighted number of comorbidities was categorized as: none, 1–3 comorbidities, and ≥4 comorbidities.33,34
Statistical Analysis and Survey Weights
To compare measures of care and family ratings of end-of-life care quality among decedents with different serious illnesses, we used the Pearson Χ2 test to examine unadjusted associations and multivariable logistic analyses adjusted for decedent age, race, gender, relationship of next-of-kin, and comorbidity. We used generalized estimating equations to adjust standard errors for clustering of patients within facilities. We report adjusted proportions for each outcome by diagnosis and P-values both for the overall association of diagnosis with each dependent variable and for the comparison of each diagnosis versus cancer.
We next assessed whether the association between diagnosis and family-reported quality was mediated by differences across diagnoses in measures of end-of-life care. After documenting the association between diagnosis and these measures (palliative care consultation, do-not-resuscitate order, and setting of death) and between these measures and family-reported quality, we added these three variables to the models assessing associations between diagnosis and family-reported quality. We included all settings of death (ICU, hospital non-ICU, nursing home, inpatient hospice) because of the important role that setting can play in end-of-life care. In sensitivity analyses we also examined the association between diagnosis and each outcome stratified by setting of death.
Missing covariate and chart review outcomes data were infrequent (<0.1%). The 25 patients with missing covariate data were excluded from models. Missing survey outcomes data were also infrequent (<4% for each outcome, except frequent uncontrolled pain [14%]).
We adjusted for nonresponse in the Bereaved Family Survey using inverse probability weights. Specifically, after fitting a logistic regression model predicting survey completion that included all covariates described above, we calculated a weight for each decedent equal to the reciprocal of the probability of that decedent’s family member completing the survey.
RESULTS
Sample Characteristics
Table 1 presents demographic and clinical characteristics by diagnosis for the full cohort. Decedents with dementia, cardiopulmonary failure, and frailty were older than decedents in other diagnosis groups. A higher proportion of decedents with ESRD were African-American (30%) compared with other diagnosis groups (range 13–19%). Decedents with ESRD had the greatest comorbid disease burden. The characteristics of patients whose families completed the Bereaved Family Survey are presented in eTable 1. Compared with this group, decedents whose families did not respond to the survey were younger and more likely to be African-American.
Table 1.
Characteristics of Veterans Who Died in VA Inpatient Settings Nationally (N=57,753)a
| Patient Characteristics | Total Sample 57,753 (100.0) | Cancer 23,532 (40.8) | Dementia 3676 (6.4) | End-stage Renal Disease 2266 (3.9) | Cardiopulmonary Failure 13,864 (24.0) | Frailty 9935 (17.2) | Other 4480 (7.7) |
|---|---|---|---|---|---|---|---|
| Age: mean age in years (SD)b | 74.1 (12.0) | 71.4 (11.2) | 82.5 (9.1) | 71.4 (11.2) | 76.7 (11.2) | 75.9 (12.4) | 70.9 (13.6) |
| Age, yearsb | |||||||
| <60 | 6855 (12) | 3391 (14) | 84 (2) | 316 (14) | 983 (7) | 1109 (11) | 972 (22) |
| 60–69 | 16,535 (29) | 8443 (36) | 335 (9) | 824 (36) | 3228 (23) | 2348 (24) | 1357 (30) |
| 70–79 | 12,591 (22) | 5368 (23) | 677 (18) | 520 (23) | 3345 (24) | 1963 (20) | 718 (16) |
| 80–89 | 16,996 (29) | 5284 (22) | 1903 (52) | 518 (23) | 4849 (35) | 3376 (34) | 1066 (24) |
| >89 | 4755 (8) | 1038 (4) | 676 (18) | 87 (4) | 1452 (10) | 1135 (11) | 367 (8) |
| Gender: Maleb | 56,484 (98) | 23,020 (98) | 3605 (98) | 2234 (99) | 13,582 (98) | 9691 (98) | 4352 (97) |
| Race | |||||||
| White | 42,601 (74) | 16,853 (72) | 2824 (77) | 1388 (61) | 10,836 (78) | 7438 (75) | 3262 (73) |
| African American | 9919 (17) | 4548 (19) | 484 (13) | 682 (30) | 1867 (13) | 1601 (16) | 737 (16) |
| Asian & Other | 954 (2) | 385 (2) | 69 (2) | 57 (3) | 201 (1) | 164 (2) | 78 (2) |
| Unknown | 4279 (7) | 1746 (7) | 299 (8) | 139 (6) | 960 (7) | 732 (7) | 403 (9) |
| Next of kinb | |||||||
| Spouse | 22,298 (39) | 8542 (36) | 1719 (47) | 1008 (45) | 5476 (40) | 3876 (39) | 1677 (37) |
| Child | 18,951 (33) | 7254 (31) | 1354 (37) | 656 (29) | 4932 (36) | 3410 (34) | 1345 (30) |
| Sibling | 8093 (14) | 4075 (17) | 223 (6) | 309 (14) | 1625 (12) | 1200 (12) | 661 (15) |
| Other | 8030 (14) | 3480 (15) | 365 (10) | 283 (12) | 1751 (13) | 1387 (14) | 764 (17) |
| None | 372 (1) | 179 (1) | 15 (0.4) | 9 (0.4) | 75 (0.5) | 61 (0.6) | 33 (0.7) |
| Number of Charlson Comorbidities | |||||||
| 0, Best health | 12,333 (21) | 6361 (27) | 960 (26) | 194 (9) | 2068 (15) | 1398 (14) | 1352 (30) |
| 1–3, Average health | 39,013 (68) | 15,711 (67) | 2424 (66) | 1553 (69) | 9596 (69) | 6768 (68) | 2961 (66) |
| ≥4, Worst health | 6407 (11) | 1460 (6) | 292 (8) | 519 (23) | 2200 (16) | 1769 (18) | 167 (4) |
| Setting of Death | |||||||
| Intensive Care Unit | 13,959 (24) | 3447 (15) | 240 (7) | 800 (35) | 4408 (32) | 3301 (33) | 1763 (39) |
| Hospital, non-ICU | 14,074 (24) | 4933 (21) | 652 (18) | 578 (26) | 3696 (27) | 3108 (31) | 1107 (25) |
| Nursing Home | 11,810 (20) | 5284 (22) | 1508 (41) | 363 (16) | 2494 (18) | 1458 (15) | 703 (16) |
| Inpatient Hospice | 17,898 (31) | 9865 (42) | 1276 (35) | 524 (23) | 3260 (24) | 2066 (21) | 907 (20) |
Data are presented as No. (column %) unless otherwise noted. Column % may not add to 100 due to rounding
Data were missing for age (n=21), gender (n=16), next of kin (n=9), and setting of death (n=12). Column N’s may not sum to total N due to missing data.
End-of-Life Care Outcomes
Table 2 shows the adjusted proportions of each dependent variable by diagnosis (see eTable 2 for unadjusted proportions). For all outcomes, both unadjusted and adjusted proportions differed significantly by diagnosis (P≤.003 for all models).
Table 2.
Adjusteda Proportions for Measures of Care at the End of Life and Family Perceptions of Quality Outcomes by Diagnosis
| Outcomes | Cancer | Dementia | End-stage Renal Disease | Cardiopulmonary Failure | Frailty | Other | P Valueb |
|---|---|---|---|---|---|---|---|
| All Veteran Decedents (N=57,728) (N ((%))c | 23,523 (40.8) | 3675 (6.4) | 2265 (3.9) | 13,854 (24.0) | 9931 (17.2) | 4480 (7.8) | |
|
| |||||||
| Measures of Care at the End of Life | |||||||
| Palliative care consultation | 73.5 | 61.4 | 50.4 | 46.7 | 43.7 | 41.5 | <.001 |
| Do-not-resuscitate order | 95.3 | 93.5 | 87.0 | 86.3 | 88.6 | 83.9 | <.001 |
| Died in inpatient hospice | 42.9 | 32.3 | 24.3 | 22.9 | 20.3 | 20.6 | <.001 |
| Died in the intensive care unit | 13.4 | 8.9 | 32.3 | 34.1 | 35.2 | 37.4 | <.001 |
|
| |||||||
| Bereaved Family Survey Participants (n=34,005) (%)d,e | 40.3 | 6.6 | 3.7 | 24.4 | 17.4 | 7.6 | |
|
| |||||||
| Overall rating of patient’s care was excellent | 59.2 | 59.3 | 54.8h | 54.8f | 53.7f | 55.0f | <.001 |
| Providers always listened to concerns | 73.8 | 75.7 | 68.6f | 71.5f | 70.5f | 73.0 | <.001 |
| Providers always provided the medical treatment that patient and family wanted | 79.1 | 80.4 | 73.4f | 76.8f | 76.5f | 77.4 | <.001 |
| Providers always kept family informed about patient’s condition and treatment | 68.2 | 71.1h | 63.8g | 65.9f | 66.6 | 67.5 | .0011 |
| Providers always gave enough emotional support prior to the patient’s death | 64.6 | 67.5h | 61.5 | 62.1f | 62.0h | 63.3 | <.001 |
| Patient had frequent uncontrolled paini | 55.0 | 49.4f | 54.3 | 55.9 | 53.3 | 55.3 | .003 |
Analyses adjusted for age, race, gender, next-of-kin relationship, and comorbidity, and clustered by facility.
P value for the overall association of diagnosis with each outcome
Table excludes 25 decedents from Table 1 who were missing covariate data. P < .003 for the comparison of each diagnosis versus cancer for all “measures of care at the end of life” outcomes
Analyses weighted for survey non-response. Table excludes 10 Bereaved Family Survey participants for whom no survey weight could be calculated because of missing covariate data.
Among the 34,005 Bereaved Family Survey participants for whom survey weight could be calculated. Sample size varies to reflect % missing data for individual survey items: overall rating (1.4), providers listened (2.6), provision of desired medical treatment (3.5), provider informed family (1.9), frequent uncontrolled pain (13.7), and providers gave enough emotional support (3.0)
P < .001 for the comparison of each diagnosis versus cancer
P < .01 for the comparison of each diagnosis versus cancer
P < .05 for the comparison of each diagnosis versus cancer
Includes only the 81.7% of patients who, per family report, experienced pain
The upper half of Table 3 shows that, in adjusted analyses, only half of ESRD patients and less than half of cardiopulmonary failure or frailty patients received palliative care consultations in the last 90 days of life (adjusted proportions 50.4%, 46.7%, and 43.7%, respectively). In contrast, 73.5% of cancer patients and 61.4% of dementia patients received such consultations. Approximately one-third of patients with ESRD, cardiopulmonary failure, and frailty (adjusted proportions 32.3%, 34.1%, and 35.2%, respectively) died in the ICU, compared with 13.4% and 8.9% among cancer and dementia patients, respectively. Conversely, 42.9% of cancer patients and 32.3% of dementia patients died in inpatient hospice units, versus less than a quarter of ESRD, cardiopulmonary failure, and frailty patients (adjusted proportions 24.3%, 22.9%, and 20.3%). Cancer and dementia patients had higher rates of do-not-resuscitate orders at the time of death (adjusted proportions 95.3% and 93.5%) than patients with ESRD (87.0%), cardiopulmonary failure (86.3%), or frailty (88.6%). For each outcome, pairwise comparisons between cancer and other diagnoses were significant (P<.003).
Table 3.
Adjusteda Proportions for Family Perceptions of End-of-Life Care Quality Outcomes by Diagnosis, Further Adjusted for Palliative Care Consultation, Setting of Death, and DNR Order
| Outcomes | Cancera | Dementia | End-stage Renal Disease | Cardiopulmonary Failure | Frailty | Other | P Valueb |
|---|---|---|---|---|---|---|---|
| Bereaved Family Survey Participantsc,d | 40.3 | 6.6 | 3.7 | 24.4 | 17.4 | 7.6 | |
|
| |||||||
| Overall rating of patient’s care was excellent | 56.4 | 57.7 | 56.4 | 56.7 | 56.0 | 57.4 | .87 |
| Providers always listened to concerns | 72.1 | 75.1f | 70.0 | 73.0 | 72.1 | 74.9f | .013 |
| Providers always provided the medical treatment that patient and family wanted | 77.6 | 79.5 | 74.5f | 78.0 | 77.9 | 78.9 | .14 |
| Providers always kept family informed about patient’s condition and treatment | 66.4 | 70.4e | 65.1 | 67.3 | 68.1 | 69.4f | .0095 |
| Providers always gave enough emotional support prior to the patient’s death | 62.3 | 66.2f | 63.0 | 63.8 | 63.9g | 65.4f | .013 |
| Patient had frequent uncontrolled painh | 55.9 | 50.1e | 53.6 | 55.2 | 52.3e | 54.3 | <.001 |
Analyses adjusted for age, race, gender, family relationship, comorbidity, palliative care consultation, setting of death, and DNR order, and clustered by facility.
P value for the overall association of diagnosis with each outcome
Analyses weighted for survey non-response. Table excludes 10 Bereaved Family Survey participants for whom no survey weight could be calculated because of missing covariate data.
Among the 34,005 Bereaved Family Survey participants for whom survey weight could be calculated. Sample size varies to reflect % missing data for individual survey items: overall rating (1.4), providers listened (2.6), provision of desired medical treatment (3.5), provider informed family (1.9), frequent uncontrolled pain (13.7), and providers gave enough emotional support (3.0)
P < .001 for the comparison of each diagnosis versus cancer
P < .01 for the comparison of each diagnosis versus cancer
P < .05 for the comparison of each diagnosis versus cancer
Includes only the 81.7% of patients who, per family report, experienced pain
The lower half of Table 3 shows that rates of family-reported excellent overall end-of-life care quality were similar for cancer and dementia patients (adjusted proportions 59.2% and 59.3% P=.61), but were lower, relative to cancer, for patients with ESRD, cardiopulmonary failure, or frailty (54.8%, 54.8%, and 53.7%, respectively; all P≤.015).
Family members’ evaluation of provider communication followed a similar pattern. However, among the 81.7% of decedents who had pain (based on family report), the proportion with frequent uncontrolled pain did not differ significantly among cancer, ESRD, cardiopulmonary failure, and frailty patients (adjusted proportions 55.0%, 54.3%, 55.9%, and 53.3%, respectively) but was significantly lower among dementia patients (49.4%, P<.001 compared with cancer).
Setting of death, palliative care consultation, and do-not-resuscitate order at death were all independently associated with family-reported overall quality of end-of-life care (P≤.001) and with several other family-reported quality measures. Adjusting for these variables attenuated the association between diagnosis and overall family rating of care, rendering the relationship non-significant (P=.87) (Table 3). In sensitivity analyses stratified by setting of death, there was no longer a significant association between diagnosis and family-reported overall quality of end-of-life care for any setting. However, differences by diagnosis in rates of palliative care consultation and DNR orders remained significant for three of the four settings (ICU, hospital non-ICU, and nursing home) (results not shown).
A sensitivity analysis assigning decedents to diagnosis categories based on hospitalizations in the last month of life produced estimates very similar to our main findings (eTable 3). Analyses with cardiopulmonary failure examined as CHF and COPD separately suggested that COPD tended to have better end-of-life care quality outcomes than CHF, but left other findings largely unchanged (results not shown). Sensitivity analyses combining frailty with “other” also produced very similar results to our primary analyses (results not shown).
DISCUSSION
In a large national cohort of nearly all patients dying in VA inpatient facilities, we observed important differences in the end-of-life care received by individuals with different illnesses. Overall, we found that diagnosis was significantly associated with the quality of end-of-life care as measured both by family surveys and by several established measures of end-of-life care quality.10,17,18,21–25,35–39 Patients with end-organ failure and frailty generally received lower quality end-of-life care than patients with cancer or dementia.
Specifically, individuals with end-organ failure were less likely than those with cancer or dementia to receive palliative care consultation or have do-not-resuscitate orders, two measures associated with high-quality end-of-life care.10,17,18,35–39 Consistent with prior work comparing COPD and cancer,5 we found that patients with end-organ failure or frailty were more likely than patients with cancer and dementia to die in the ICU, a measure of end-of-life treatment intensity associated with poor symptom control and bereavement outcomes.10,21–25,40 Conversely, death in a hospice unit–the inpatient setting with the highest family-reported quality13–was more common among cancer and dementia patients than those with end-organ failure or frailty. Finally, overall quality of end-of-life care was rated more favorably by family members of cancer and dementia patients than by those of patients with end-organ failure or frailty. These findings suggest a need for greater attention to diagnosis-related disparities in the quality of end-of-life care.
What factors explain these differences in end-of-life care across conditions? We found that the observed differences by diagnosis in setting of death, palliative care consultation, and do-not-resuscitate orders mediated most of the diagnosis-related variation in family-reported end-of-life care quality. Our analysis stratified by setting of death also emphasize that the setting of end-of-life care is a key driver of the differences in quality by diagnosis. These results suggest several actionable steps that may improve disparities in overall quality of end-of-life care, such as increasing access to palliative care and inpatient hospice for patients with ESRD, cardiopulmonary failure, and frailty, and increasing goals of care discussions that address code status and preferred setting of death for patients with these conditions.
Another potential contributor to our findings could be diagnosis-related differences in patient and/or family preferences. However, we found that the groups of patients who were less likely to receive palliative care consultation, less likely to have a do-not-resuscitate order, and more likely to die in the ICU–namely those with end-organ failure or frailty–also had lower rates of families reporting that their providers offered the medical treatment that the patient and family wanted. This is more consistent with the notion that some diagnosis groups experience a greater mismatch between the care they receive and their underlying preferences, rather than diagnosis groups exhibiting sharp differences in preferences.
Our findings may also reflect differences in perceptions regarding the treatability of different serious conditions and the reversibility of their associated acute complications. For instance, patients with end-organ failure often have a clinical trajectory marked by acute exacerbations that are temporarily responsive to interventions.7,29 But when these interventions are no longer beneficial, it can be a difficult transition for patients, families, and providers. Therefore, differences in quality by diagnosis may reflect a failure to accept impending death and de-escalate aggressive treatment in conditions characterized by chronic progressive end-organ failure. Although measures of treatment intensity have been used to assess quality in oncology,41 the frequency of high-intensity care for patients with end-organ failure in our study suggests potential for use of these as quality measures among patients dying of other conditions as well.
Another important finding was the high prevalence of pain among inpatient decedents. More than three-quarters of patients had pain in the last month of life, over half of whom had frequent uncontrolled pain, similar to results of a recent study among community-dwelling adults near the end of life.30 Our finding that patients with end-organ failure and frailty had similar rates of frequent, uncontrolled pain as cancer patients (a group generally appreciated to be at high risk for pain) suggests another opportunity to improve care. The lower rates of uncontrolled pain in dementia patients must be viewed with caution since pain is often under-appreciated in this population, even by family members.42
The strengths of our study include a large national cohort with a rich set of outcomes on end-of-life care from both chart review and a family survey, and–-to our knowledge–-one of the most comprehensive assessments to date of the quality of end-of-life care received by patients with different serious illnesses. Our study builds on past work on the quality of care provided to hospitalized patients at the end of life43 (the most common setting of death nationally44,45) by also including the growing number of patients dying in nursing homes and inpatient hospice.5 Our finding that measures of end-of-life care and family evaluations of care were similar for patients with dementia as for cancer patients is novel, and suggests that the substantial body of research aimed at improving end-of-life care for dementia patients may be having an impact.46–48
Nonetheless, our study has several limitations. First, while previous studies have documented the value of classifying patients near the end of life into mutually exclusive diagnosis groups,6,7,29 there are challenges in doing so. Using mutually exclusive diagnosis groups does not address multi-morbidity. We adjusted for comorbidity in our models; however, the end-of-life care experience for patients with multiple conditions could differ substantially from the experiences of those with one condition. Defining frailty is particularly difficult, especially using administrative data,29 since frailty can exist along with other conditions and may reflect substantial clinical heterogeneity. Results were very similar when combining “frailty” into the broader group of “other” conditions. Second, our findings may not generalize to patients outside of the VA, though some research comparing end-of-life care quality between VA and non-VA health care facilities suggests care may be similar.49 Furthermore, this rich VA data source allowed for a more robust assessment of end-of-life care across multiple diagnoses than has otherwise been possible. Third, while our survey response rate was high (64%), nonresponse bias is possible. We attempted to minimize this by adjusting survey analyses for nonresponse. Fourth, while examining the timing of do-not-resuscitate orders and palliative care consultations relative to death would be informative, such information was unavailable. Finally, while past research documents that patient-family member agreement is high for quality of care ratings, it is lower for ratings of subjective symptoms,50 which could affect the validity of our pain-related analyses.
In conclusion, while there is room for improvement in end-of-life care across all diagnoses, family-reported end-of-life care quality was significantly better for cancer and dementia patients than for patients with ESRD, cardiopulmonary failure, or frailty. This quality advantage was mediated by palliative care consultation, do-not-resuscitate order, and setting of death. Increasing access to palliative care and increasing goals of care discussions that address code status and preferred setting of death, particularly for patients with end-organ failure and frailty, may improve the quality of end-of-life care for Americans dying with these conditions.
Supplementary Material
Acknowledgments
Authors’ Contributions:
Study concept and design: Wachterman, Ersek, Keating.
Acquisition of data: Wachterman, Smith, Ersek.
Analysis and interpretation of data: Wachterman, Pilver, Smith, Ersek, Lipsitz, Keating.
Drafting of the manuscript: Wachterman, Keating.
Critical revision of the manuscript for important intellectual content: Wachterman, Pilver, Smith, Ersek, Lipsitz, Keating.
Statistical analysis: Wachterman, Pilver, Lipsitz, Keating.
Obtained funding: Wachterman.
Administrative, technical, or material support: Wachterman, Pilver, Smith, Ersek, Lipsitz, Keating
Study supervision: Ersek, Keating.
Conflict of Interest Disclosures: All authors will complete and submit the ICMJE Form for Disclosure of Potential Conflicts of Interest and there are none to report.
Funding/Support and Role of Funder/Sponsor: Dr. Wachterman received support from the National Palliative Care Research Center Junior Faculty Career Development Award, from grant 1K23AG049088-01A1 from the National Institute on Aging, and from the Department of Veterans Affairs, Veterans Health Administration. None of the sponsors played any role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation or approval of the manuscript, and decision to submit the manuscript for publication. VA reviewed this article before submission. The views expressed in this article are those of the authors and do not reflect the position or policy of the Department of Veterans Affairs.
Data Access, Responsibility, and Analysis: Dr. Wachterman had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Previous Presentation: An earlier version of this work was presented in abstract form at the national meeting of the American Academy of Hospice and Palliative Medicine; Philadelphia, Pennsylvania; February 25, 2015; and at the national meeting of the Society of General Internal Medicine; Toronto, Canada; April 23, 2015.
Additional Contributions: We thank Benjamin Sommers, MD, PhD, Harvard School of Public Health, for his helpful feedback on an earlier version of this manuscript. He did not receive compensation for the contribution. Written permission to name Dr. Sommers in this Acknowledgment section has been obtained.
References
- 1.Kochanek KD, Murphy SL, Xu J, Arias E. Mortality in the United States, 2013. NCHS Data Brief, no 178. Hyattsville, MD: National Center for Health Statistics; 2014. [PubMed] [Google Scholar]
- 2.Foley KM, Gelband H, editors. Improving Palliative Care for Cancer: Summary and Recommendations. Washington (DC): 2001. [PubMed] [Google Scholar]
- 3.Higginson I. Palliative care: a review of past changes and future trends. J Public Health Med. 1993 Mar;15(1):3–8. doi: 10.1093/oxfordjournals.pubmed.a042817. [DOI] [PubMed] [Google Scholar]
- 4.Barnato AE, Cohen ED, Mistovich KA, Chang CC. Hospital end-of-life treatment intensity among cancer and non-cancer cohorts. J Pain Symptom Manage. 2015 Mar;49(3):521–529. e521–525. doi: 10.1016/j.jpainsymman.2014.06.017. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5.Teno JM, Gozalo PL, Bynum JP, et al. Change in end-of-life care for Medicare beneficiaries: site of death, place of care, and health care transitions in 2000, 2005, and 2009. JAMA. 2013 Feb 6;309(5):470–477. doi: 10.1001/jama.2012.207624. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6.Duffy SA, Copeland LA, Hopp FP, Zalenski RJ. Diagnostic classifications and resource utilization of decedents served by the Department of Veterans Affairs. J Palliat Med. 2007;10(5):1137–1145. doi: 10.1089/jpm.2006.0256. [DOI] [PubMed] [Google Scholar]
- 7.Lunney JR, Lynn J, Hogan C. Profiles of older Medicare decedents. J Am Geriatr Soc. 2002;50(6):1108–1112. doi: 10.1046/j.1532-5415.2002.50268.x. [DOI] [PubMed] [Google Scholar]
- 8.Teno JM, Clarridge BR, Casey V, et al. Family perspectives on end-of-life care at the last place of care. JAMA. 2004 Jan 7;291(1):88–93. doi: 10.1001/jama.291.1.88. [DOI] [PubMed] [Google Scholar]
- 9.Casarett D, Pickard A, Bailey FA, et al. A nationwide VA palliative care quality measure: the family assessment of treatment at the end of life. J Palliat Med. 2008 Jan-Feb;11(1):68–75. doi: 10.1089/jpm.2007.0104. [DOI] [PubMed] [Google Scholar]
- 10.Finlay E, Shreve S, Casarett D. Nationwide veterans affairs quality measure for cancer: the family assessment of treatment at end of life. J Clin Oncol. 2008 Aug 10;26(23):3838–3844. doi: 10.1200/JCO.2008.16.8534. [DOI] [PubMed] [Google Scholar]
- 11.Rhodes RL, Mitchell SL, Miller SC, Connor SR, Teno JM. Bereaved family members’ evaluation of hospice care: what factors influence overall satisfaction with services? J Pain Symptom Manage. 2008 Apr;35(4):365–371. doi: 10.1016/j.jpainsymman.2007.12.004. [DOI] [PubMed] [Google Scholar]
- 12.Teno JM, Mor V, Ward N, et al. Bereaved family member perceptions of quality of end-of-life care in U.S. regions with high and low usage of intensive care unit care. J Am Geriatr Soc. 2005 Nov;53(11):1905–1911. doi: 10.1111/j.1532-5415.2005.53563.x. [DOI] [PubMed] [Google Scholar]
- 13.Ersek M, Thorpe J, Kim H, Thomasson A, Smith D. Exploring End-of-Life Care in Veterans Affairs Community Living Centers. J Am Geriatr Soc. 2015 Apr;63(4):644–650. doi: 10.1111/jgs.13348. [DOI] [PubMed] [Google Scholar]
- 14.Ersek M, Smith D, Cannuscio C, Richardson DM, Moore D. A Nationwide Study Comparing End-of-Life Care for Men and Women Veterans. J Palliat Med. 2013 Jul;16(7):734–740. doi: 10.1089/jpm.2012.0537. [DOI] [PubMed] [Google Scholar]
- 15.Casarett D, Pickard A, Amos Bailey F, et al. Important aspects of end-of-life care among veterans: implications for measurement and quality improvement. J Pain Symptom Manage. 2008 Feb;35(2):115–125. doi: 10.1016/j.jpainsymman.2007.03.008. [DOI] [PubMed] [Google Scholar]
- 16.National PROMISE Center: Unpublished data. Philadelphia, PA: Center for Health Equity Research and Promotion; 2012. [Google Scholar]
- 17.Manfredi PL, Morrison RS, Morris J, Goldhirsch SL, Carter JM, Meier DE. Palliative care consultations: how do they impact the care of hospitalized patients? J Pain Symptom Manage. 2000;20(3):166–173. doi: 10.1016/s0885-3924(00)00163-9. [DOI] [PubMed] [Google Scholar]
- 18.Phillips RS, Wenger NS, Teno J, et al. Choices of seriously ill patients about cardiopulmonary resuscitation: correlates and outcomes. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. Am J Med. 1996 Feb;100(2):128–137. doi: 10.1016/s0002-9343(97)89450-8. [DOI] [PubMed] [Google Scholar]
- 19.Lysaght S, Ersek M. Settings of Care within Hospice: New Options and Questions about Dying “At Home”. J Hosp Palliat Nurs. 2013;15(3):171. doi: 10.1097/NJH.0b013e3182765a17. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 20.Evans WG, Cutson TM, Steinhauser KE, Tulsky JA. Is there no place like home? Caregivers recall reasons for and experience upon transfer from home hospice to inpatient facilities. J Palliat Med. 2006;9(1):100–110. doi: 10.1089/jpm.2006.9.100. [DOI] [PubMed] [Google Scholar]
- 21.Kross EK, Engelberg RA, Gries CJ, Nielsen EL, Zatzick D, Curtis JR. ICU care associated with symptoms of depression and posttraumatic stress disorder among family members of patients who die in the ICU. Chest Journal. 2011;139(4):795–801. doi: 10.1378/chest.10-0652. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 22.Gries CJ, Engelberg RA, Kross EK, et al. Predictors of symptoms of posttraumatic stress and depression in family members after patient death in the ICU. Chest Journal. 2010;137(2):280–287. doi: 10.1378/chest.09-1291. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 23.Wright AA, Keating NL, Balboni TA, Matulonis UA, Block SD, Prigerson HG. Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers’ mental health. J Clin Oncol. 2010 Oct 10;28(29):4457–4464. doi: 10.1200/JCO.2009.26.3863. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 24.Nelson JE, Meier DE, Oei EJ, et al. Self-reported symptom experience of critically ill cancer patients receiving intensive care. Crit Care Med. 2001;29(2):277–282. doi: 10.1097/00003246-200102000-00010. [DOI] [PubMed] [Google Scholar]
- 25.Siegel MD, Hayes E, Vanderwerker LC, Loseth DB, Prigerson HG. Psychiatric illness in the next of kin of patients who die in the intensive care unit*. Crit Care Med. 2008;36(6):1722–1728. doi: 10.1097/CCM.0b013e318174da72. [DOI] [PubMed] [Google Scholar]
- 26.The Promise Survey. Center for Health Equity Research and Promotion; 2012. [Accessed November 21, 2015]. www.cherp.research.va.gov/CHERP/PROMISE/The_PROMISE_Survey.asp. [Google Scholar]
- 27.Smith Sehdev AE, Hutchins GM. Problems with proper completion and accuracy of the cause-of-death statement. Arch Intern Med. 2001 Jan 22;161(2):277–284. doi: 10.1001/archinte.161.2.277. [DOI] [PubMed] [Google Scholar]
- 28.Wachterman M, Kiely DK, Mitchell SL. Reporting dementia on the death certificates of nursing home residents dying with end-stage dementia. JAMA. 2008;300(22):2608. doi: 10.1001/jama.2008.768. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 29.Lunney JR, Lynn J, Foley DJ, Lipson S, Guralnik JM. Patterns of functional decline at the end of life. JAMA. 2003 May 14;289(18):2387–2392. doi: 10.1001/jama.289.18.2387. [DOI] [PubMed] [Google Scholar]
- 30.Singer AE, Meeker D, Teno JM, Lynn J, Lunney JR, Lorenz KA. Symptom trends in the last year of life from 1998 to 2010: a cohort study. Ann Intern Med. 2015 Feb 3;162(3):175–183. doi: 10.7326/M13-1609. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 31.Smith AK, Cenzer IS, Knight SJ, et al. The epidemiology of pain during the last 2 years of life. Ann Intern Med. 2010;153(9):563–569. doi: 10.1059/0003-4819-153-9-201011020-00005. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 32.Deyo RA, Cherkin DC, Ciol MA. Adapting a clinical comorbidity index for use with ICD-9-CM administrative databases. J Clin Epidemiol. 1992;45(6):613–619. doi: 10.1016/0895-4356(92)90133-8. [DOI] [PubMed] [Google Scholar]
- 33.Walter LC, Lindquist K, Nugent S, et al. Impact of age and comorbidity on colorectal cancer screening among older veterans. Ann Intern Med. 2009 Apr 7;150(7):465–473. doi: 10.7326/0003-4819-150-7-200904070-00006. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 34.Sudore RL, Casarett D, Smith D, Richardson DM, Ersek M. Family involvement at the end-of-life and receipt of quality care. J Pain Symptom Manage. 2014 Dec;48(6):1108–1116. doi: 10.1016/j.jpainsymman.2014.04.001. [DOI] [PubMed] [Google Scholar]
- 35.Casarett D, Pickard A, Bailey FA, et al. Do palliative consultations improve patient outcomes? J Am Geriatr Soc. 2008 Apr;56(4):593–599. doi: 10.1111/j.1532-5415.2007.01610.x. [DOI] [PubMed] [Google Scholar]
- 36.Higginson IJ, Finlay IG, Goodwin DM, et al. Is there evidence that palliative care teams alter end-of-life experiences of patients and their caregivers? J Pain Symptom Manage. 2003 Feb;25(2):150–168. doi: 10.1016/s0885-3924(02)00599-7. [DOI] [PubMed] [Google Scholar]
- 37.Higginson IJ, Finlay I, Goodwin DM, et al. Do hospital-based palliative teams improve care for patients or families at the end of life? J Pain Symptom Manage. 2002 Feb;23(2):96–106. doi: 10.1016/s0885-3924(01)00406-7. [DOI] [PubMed] [Google Scholar]
- 38.Hanson LC, Usher B, Spragens L, Bernard S. Clinical and economic impact of palliative care consultation. J Pain Symptom Manage. 2008;35(4):340–346. doi: 10.1016/j.jpainsymman.2007.06.008. [DOI] [PubMed] [Google Scholar]
- 39.Kuin A, Courtens AM, Deliens L, et al. Palliative care consultation in the Netherlands: a nationwide evaluation study. J Pain Symptom Manage. 2004;27(1):53–60. doi: 10.1016/j.jpainsymman.2003.06.001. [DOI] [PubMed] [Google Scholar]
- 40.Fisher ES, Wennberg DE, Stukel TA, Gottlieb DJ, Lucas FL, Pinder EL. The implications of regional variations in Medicare spending. Part 2: health outcomes and satisfaction with care. Ann Intern Med. 2003 Feb 18;138(4):288–298. doi: 10.7326/0003-4819-138-4-200302180-00007. [DOI] [PubMed] [Google Scholar]
- 41.Earle CC, Landrum MB, Souza JM, Neville BA, Weeks JC, Ayanian JZ. Aggressiveness of cancer care near the end of life: is it a quality-of-care issue? J Clin Oncol. 2008;26(23):3860–3866. doi: 10.1200/JCO.2007.15.8253. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 42.Corbett A, Husebo B, Malcangio M, et al. Assessment and treatment of pain in people with dementia. Nature Reviews Neurology. 2012;8(5):264–274. doi: 10.1038/nrneurol.2012.53. [DOI] [PubMed] [Google Scholar]
- 43.Walling AM, Asch SM, Lorenz KA, et al. The quality of care provided to hospitalized patients at the end of life. Arch Intern Med. 2010 Jun 28;170(12):1057–1063. doi: 10.1001/archinternmed.2010.175. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 44.Statistics NCfH. Health, United States, 2010: With Special Feature on Death and Dying. Hyattsville, MD: 2011. [PubMed] [Google Scholar]
- 45.Goodman DCEA, Fisher ES, Chang CH. Trends and Variation in End-of- Life Care for Medicare Beneficiaries With Severe Chronic Illness: A Report of the Dartmouth Atlas Project. Lebanon, NH: Dartmouth Institute for Health Policy & Clinical Practice; 2011. [PubMed] [Google Scholar]
- 46.Gozalo P, Teno JM, Mitchell SL, et al. End-of-life transitions among nursing home residents with cognitive issues. N Engl J Med. 2011 Sep 29;365(13):1212–1221. doi: 10.1056/NEJMsa1100347. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 47.Mitchell SL, Miller SC, Teno JM, Kiely DK, Davis RB, Shaffer ML. Prediction of 6-month survival of nursing home residents with advanced dementia using ADEPT vs hospice eligibility guidelines. JAMA. 2010;304(17):1929–1935. doi: 10.1001/jama.2010.1572. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 48.Mitchell SL, Teno JM, Kiely DK, et al. The clinical course of advanced dementia. N Engl J Med. 2009;361(16):1529–1538. doi: 10.1056/NEJMoa0902234. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 49.Lu H, Trancik E, Bailey FA, et al. Families’ perceptions of end-of-life care in Veterans Affairs versus non-Veterans Affairs facilities. J Palliat Med. 2010 Aug;13(8):991–996. doi: 10.1089/jpm.2010.0044. [DOI] [PubMed] [Google Scholar]
- 50.McPherson CJ, Addington-Hall JM. Judging the quality of care at the end of life: can proxies provide reliable information? Soc Sci Med. 2003 Jan;56(1):95–109. doi: 10.1016/s0277-9536(02)00011-4. [DOI] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.