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Assessing the Quality of Death and Dying in an Integrated Health Care System in Rural Pennsylvania
Vol. 50 No. 3 September 2015
Journal of Pain and Symptom Management 343
Original Article
Assessing the Quality of Death and Dying in an Integrated Health Care System in Rural Pennsylvania Jonathan D. Darer, MD, MPH, Desera e N. Clarke, MPA, Amanda C. Sees, BA, Andrea L. Berger, MAS, H. Lester Kirchner, PhD, Rebecca A. Stametz, DEd, MPH, and Daniel Davis, PhD Center for Clinical Innovation (J.D.D., D.N.C., A.C.S., R.A.S.), Center for Health Research (A.L.B., H.L.K.), and Center for Bioethics (D.D.), Geisinger Health System, Danville, Pennsylvania, USA
Abstract Context. With growing emphasis on improving the value of health care, there is increased scrutiny of quality outcomes and high health expenditures during the final months of life. Objectives. The purpose of this project is to answer 1) how do next of kin (NOK) perceive the quality of their loved ones’ dying and death; 2) are there patient and NOK characteristics that predict lower quality; and 3) are there structural aspects of care associated with lower quality? Methods. A mailed survey was administered to a stratified random sample of NOK of Geisinger Health System patients who had died in the past year. The Quality of Death and Dying, the General Anxiety Disorder seven-item scale, the Patient Health Questionnaire eight-item depression scale, and selected questions from the Toolkit of Instruments to Measure End of Life Care were used. Results. There were 672 respondents. Significant predictors of Quality of Death and Dying score were number of doctors involved in care (P ¼ 0.0415), location of death (P < 0.0001), frequency of receiving confusing or contradictory information (P < 0.0001), illness progression (P ¼ 0.0343), Patient Health Questionnaire-2 score (P ¼ 0.0148), and General Anxiety Disorder seven-item scale score (P < 0.0070). Conclusion. Several findings suggest that factors such as NOK depression and anxiety, prolonged illness, dying in the hospital, receipt of conflicting information, and confusion around the doctor in charge are associated with lower quality of the dying and death experience for NOK. Further investigation is warranted to facilitate high-quality measurement and the use of measurement results to improve care. J Pain Symptom Manage 2015;50:343e349. Ó 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved. Key Words End-of-life care, quality of dying and death, next of kin, conflicting information
Introduction With the growing emphasis on improving value in health care delivery, there is increased scrutiny of both the quality of health outcomes and the high health expenditures during the last few months of life.1 As noted by Provonost and Angus,2 traditional models of value measurement, for example, ‘‘increases in quality adjusted life years divided by costs,’’ are nonsensical when applied to the deceased. Developing
Address correspondence to: Deserae N. Clarke, MPA, Center for Clinical Innovation, Geisinger Health System, 100 N. Academy Avenue, Danville, PA 17821, USA. E-mail: dnclarke@ geisinger.edu Ó 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
accurate methods to measure the quality of the dying process is a necessary step toward delivering greater health value to dying patients and their families. Deficits in understanding the experiences of patients and families,3,4 failures in communication and care coordination,3 and an often misguided emphasis on high-intensity treatment despite poor prognoses3,5 are prominent well-documented barriers to advancing the quality of care for patients at the end of life. There has been little attention paid to the dying process as a Accepted for publication: March 12, 2015.
0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2015.03.011
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performance measure for health care systems or health plans. The purpose of this project is to answer three questions about end-of-life outcomes in the Geisinger Health System (GHS) located in rural Pennsylvania: 1) how do next of kin (NOK) perceive the quality of dying and death experienced by their loved ones; 2) are there patient and NOK characteristics that predict lower quality; and 3) what structural aspects of care delivery, such as frequency of receiving confusing or contradictory information, clarity of which doctor was in charge, and number of doctors involved in care, are associated with lower quality? It is known that patients with such chronic conditions as end-stage renal disease (ESRD), congestive heart failure (CHF), and chronic obstructive pulmonary disease (COPD) are at greater risk for dying experiences of poor quality;3,6e11 thus, these populations were oversampled for analysis and future initiatives.
Methods GHS is an integrated health system providing care to more than 2.6 million residents throughout 44 counties in central and northeastern Pennsylvania. The population is generally older than the average for the U.S., with a heavier burden of chronic disease. A random sample of deceased patients was drawn from the electronic health record. Patients were eligible for selection if they were older than 65 years at the date of death. Additionally, they had to have had at least one outpatient visit within the two years before death and died between three and 15 months before the administration of the survey. Patients with ESRD, CHF, and COPD on their electronic health record problem list were oversampled; any patient with one of these three diseases was included in the sample. Of the remaining patients who did not have ESRD, CHF, or COPD, a random sample was included. A survey was mailed to the listed NOK of the selected sample of deceased patients. To obtain the mailing addresses of NOK, we used the emergency contact field in the deceased patient’s chart. A modified Dillman method12 was used for mailing the survey. The mailing packet included spiritual care information, a notification letter explaining the initiative, and instructions for opting out of the project. The initial survey was sent to the full sample. After three weeks, NOK who had not asked to be removed from the project were called by a member of the project team to confirm receipt of the questionnaire and inquire about interest in participation. Those interested in participating were sent a follow-up letter explaining the project in more detail and a copy of the survey to complete and return by mail.
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Geisinger’s institutional review board reviewed and declared this initiative to be a quality assurance project and thus exempt under the federal regulations governing human subjects research.
Questionnaire The survey questionnaire comprised the Quality of Death and Dying instrument (QODD), the General Anxiety Disorder seven-item scale (GAD-7), the Patient Health Questionnaire eight-item depression scale (PHQ-8), selected questions from the Toolkit of Instruments to Measure End of Life Care, and questions created by the project team. The QODD is a 25-item measure of the quality of death and dying as perceived by NOK.13 The GAD-7 and PHQ-8 were used to assess NOK for symptoms of anxiety and depression. The brief two-question version of the PHQ (PHQ-2) also was considered for analysis purposes. A series of questions related to coordination and continuity of care and location of death were added from the Toolkit of Instruments to Measure End of Life Care.14 Finally, the research team added a question regarding illness progression at the end of life.
Statistical Analysis Scoring instructions of each survey instrument were followed. An overall QODD score was calculated if the respondent answered at least one of the 22 questions used for scoring. Possible overall scores ranged from 0 to 100 (low quality to high quality).15 An overall PHQ score was calculated if the NOK responded to all eight questions. Possible overall scores ranged from 0 to 24 (no symptoms of depression to severe depressive symptoms).16 Similarly, an overall GAD score was calculated only if the NOK responded to all seven questions, with a range from 0 to 21 (no symptoms of anxiety to severe anxiety symptoms).17 Characteristics of deceased patients, NOK, the quality of the dying process, and coordination of care and conflicting information are summarized using the mean and SD or, for skewed distributions, the median and interquartile range (IQR) for continuous variables; categorical variables are presented using frequency counts and percentages. Comparisons between respondents and nonrespondents were tested using the Wilcoxon rank sum test, Pearson’s Chisquared test, or Fisher’s exact test, as appropriate. To identify patient or NOK characteristics and structural aspects of care delivery associated with lower quality of the dying process, a series of linear regression models were fit. Models were constructed using both the PHQ-8 and PHQ-2 scores. Because both models produced similar results, the PHQ-2 was used in the
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Assessing the Quality of Death and Dying
final models. Variable selection was based on significant bivariate results (P # 0.05). Model results are presented with estimated marginal means with corresponding 95% CIs and P-values. Additionally, univariate analysis to measure variable association with receipt of conflicting information and clarity of who was in charge was performed. Associations were tested using either Pearson’s Chi-squared test or Fisher’s exact test based on the variable. All analyses were conducted using SAS version 9.3 (SAS Institute, Inc., Cary, NC).
Results Of 4655 decedents who met the inclusion criteria, the NOK of 2644 were selected for the QODD survey. Of these, 1017 patients had a history of COPD, ESRD, or CHF, and thus their NOK were included in survey outreach. The remaining 1627 patients were identified via a random sample of patients with no history of COPD, ESRD, or CHF. Deceased patients (whose NOK received surveys) were on average of 81.0 years; 48.3% were females and 99.4% were Caucasian. A total of 672 NOK responded to the survey, for a response rate of 25.4%. No significant differences were observed in characteristics of decedents by NOK response (Table 1). The NOK respondents were predominantly females (72.8%), white (98.5%), and 60 years or older (64.4%). They were most frequently a spouse or partner (35.9%) or a child (50.8%) of the deceased patient, and nearly half (47.4%) lived with the patient. Most had a high school diploma or some college education (59.6%), and many had a four-year college degree or higher (34.7%) (Table 2). There were 657 (98%) survey respondents with calculated QODD scores. The median score was 73.6 (IQR 56.8e86.2). There were 634 (94%) respondents with available PHQ-8 scores, with a median of 4 (IQR 1e8). There were 632 (94%) respondents with
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available GAD-7 scores, with a median of 2 (IQR 0e6) (Table 2). In univariate analysis, the patient and NOK characteristics associated with poor QODD scores were the PHQ-8 scores (P < 0.0001), the GAD-7 scores (P < 0.0001), and illness progression. Patients who were sick for most of the last six months of life had lower scores reported by NOK than patients who were relatively healthy and then suddenly stricken (70.8 vs. 81.7, P ¼ 0.0079) (Table 2). PHQ-2 (P ¼ 0.0148), GAD-7 (P ¼ 0.0070), and illness progression (P ¼ 0.0343) also remained significant in the final regression model (Supplementary Table 1, available at jpsmjournal.com). The structural aspects of care that affected the QODD score in univariate analysis were location of death, receipt of contradictory information, and whether NOK were clear about the physicians in charge of their loved ones. Lower QODD scores were associated with dying in the hospital (68.2) compared with dying at home (80.0) or dying in hospice (76.3) (P < 0.0001). There were 499 responses to the question about the frequency of receiving confusing or conflicting information, a question that was answered only by NOK who reported that their loved one saw two or more doctors for care. Nearly half of these reported receiving contradictory information sometimes (32.9%), usually, or always (8.8%). NOK who received contradictory information sometimes, usually, or always had worse PHQ scores (P < 0.0001), worse GAD scores (P < 0.0001), and lower QODD scores (P < 0.0001) (Table 3). QODD scores were 33% lower when the NOK always or usually received contradictory information (51.2) compared with those who never received contradictory information regarding their loved one’s care (76.2) (P < 0.0001). Similarly, when NOK were unclear which physician was in charge, the QODD scores were lower (68.0 vs. 72.3, P ¼ 0.0004) (Table 2).
Table 1 Comparison of Respondents and Nonrespondents Based on the Total Selected NOK Population for the QODD Survey (n ¼ 2644) Nonresponse (n ¼ 1972)
Responded (n ¼ 672) Patient Characteristic Age Gender Race Location of death GHS PCP
Total Population (n ¼ 2644)
Category
N
Mean (SD)/%
N
Mean (SD)/%
P-value
N
Mean (SD)/%
Age Male Female White Other GHS inpatient Not GHS inpatienta Yes No
672 344 328 667 4 72 600 207 465
81.5 (7.6) 51.2 48.8 99.4 0.6 10.7 89.3 30.8 69.2
1972 1021 948 1957 12 163 1809 546 1426
80.9 (8.4) 51.9 48.1 99.4 0.6 8.3 91.7 27.7 72.3
0.0759 0.7664
2644 1365 1276 2624 16 235 2409 753 1891
81.0 (8.2) 51.7 48.3 99.4 0.6 8.9 91.1 28.5 71.5S
1.0000 0.0541 0.1222
NOK ¼ next of kin; QODD ¼ Quality of Death and Dying; GHS ¼ Geisinger Health System; PCP ¼ primary care physician. a Not GHS inpatient refers to all patients who died without a current admission to a Geisinger facility (e.g., nursing home, other inpatient hospital, etc.).
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Table 2 Measure Scores by Patient and NOK Characteristics QODD Score (n ¼ 657) Measures QODD score Patient age NOK age NOK sex NOK relationship NOK education level
Lived with patient vs. not Location of death
Number of self-reported doctors PHQ-8
GAD-7
Question 53dcontradictory informationc Question 54dclear who in chargec Question 55dillness progressionc
Category All respondents 65e74 (n ¼ 133) 75e84 (n ¼ 288) 85þ (n ¼ 251) 18e59 (n ¼ 234) 60e79 (n ¼ 336) 80e99 (n ¼ 88) Male (n ¼ 180) Female (n ¼ 482) Spouse/partner (n ¼ 237) Child (n ¼ 335) Other (n ¼ 88) Less than high school (n ¼ 37) High school diploma or GED (n ¼ 224) Some college or trade school (n ¼ 169) Four-year college degree (n ¼ 98) Graduate or professional school (n ¼ 131) Yes (n ¼ 313) No (n ¼ 347) At home (n ¼ 210) In a hospital (n ¼ 177) In hospice (n ¼ 71) In a nursing home or other long-term care/facility (n ¼ 182) Other (n ¼ 15) 0e1 (n ¼ 113) 2þ (n ¼ 511) None (0e4) n ¼ 351 Mild (5e9) n ¼ 166 Moderate (10e14) n ¼ 69 Moderately severe and severe (15þ) n ¼ 48 None (0e4) n ¼ 417 Mild (5e9) n ¼ 134 Moderate (10e14) n ¼ 47 Severe (15þ) n ¼ 34 Always/usually (n ¼ 44) Sometimes (n ¼ 164) Never (n ¼ 291) Yes (n ¼ 335) No (n ¼ 153) Sick for most of the last six months (n ¼ 224) Healthy for part of the last six months and gradually declined (n ¼ 79) Healthy for most of the last six months and rapidly declined (n ¼ 142) Healthy and suddenly stricken shortly before death (n ¼ 59)
Median (IQR) 73.6 69.5 73.5 75.0 71.8 75.0 73.8 73.7 73.7 73.1 75.3 69.3 79.3 72.5 73.5 73.0 73.2 73.7 73.6 80.0 68.2 76.3 69.4
(56.8, (52.9, (58.9, (56.8, (55.5, (57.6, (55.5, (58.1, (56.5, (54.3, (58.2, (56.3, (59.5, (56.5, (58.1, (53.3, (58.2, (55.5, (58.1, (61.4, (50.6, (59.5, (54.4,
86.2) 86.8) 85.8) 85.4) 84.5) 87.6) 84.4) 84.8) 86.7) 87.1) 85.8) 84.3) 91.9) 86.3) 85.0) 85.6) 85.2) 87.1) 85.3) 89.0) 82.9) 87.7) 82.7)
78.8 76.5 73.7 76.0 69.8 73.7 55.0 75.9 74.7 63.9 52.8 51.2 71.8 76.2 72.3 68.0 70.8 76.1
(46.0, 88.8) (59.7, 89.1) (57.2, 86.1) (61.1, 88.4) (54.4, 85.3) (53.4, 83.7) (26.8, 78.6) (59.5, 88.2) (59.5, 84.1) (47.5, 75.8) (24.4, 73.0) (34.0, 69.0) (55.5, 83.2) (61.4, 89.0) (59.4, 88.0) (51.4 79.5) (55.2, 81.8) (58.9, 86.7)
P-valuea 0.5704 0.3765 0.4354 0.5102 0.4838
0.9309 <0.0001b
0.1391 <0.0001b
<0.0001b
<0.0001b 0.0004b 0.0079b
75.0 (57.9, 87.7) 81.7 (67.2 91.7)
NOK ¼ next of kin; QODD ¼ Quality of Death and Dying; IQR ¼ interquartile range; GED ¼ General Educational Development; PHQ ¼ Patient Health Questionnaire; GAD ¼ General Anxiety Disorder. a P-values for QODD are from the Kruskal-Wallis test. b P < 0.05. c Only NOK who indicated more than one physician (n ¼ 511) were asked to answer Questions 53e55.
Significant structural predictors of QODD score in the multivariate model were number of doctors involved in care (P ¼ 0.0415), location of death (P < 0.0001), frequency of confusing or contradictory information (P < 0.0001), and illness progression (P ¼ 0.0343). Clarity over which doctor was in charge was not a significant predictor of QODD score in the multivariate model (Supplementary Tables 2 and 3, available at jpsmjournal.com). There were 488 responses to the question about whether NOK were clear about which doctors were
in charge of their loved ones’ care. Most NOK reported that it was clear who was in charge of care (68.6%). Children of the patient were less likely to have clarity around who was in charge (63.0%) than spouses/partners (74.0%) or those who reported their relationship as other (79.3%) (P ¼ 0.0106). NOK who were clear who was in charge of care had better PHQ scores (P ¼ 0.0028), better GAD scores (P ¼ 0.0023), and higher QODD scores (P ¼ 0.0076). They also reported a lower frequency of receiving confusing or contradictory information (P < 0.0001) (Table 3).
Confusing or Contradictory Information (n ¼ 499)a Always/ Usually Measures
Lived with patient vs. not PHQ-8
GAD-7
QODD score
Question 53dcontradictory information Question 54dclear who in charge
Never
Category
N
%
N
%
N
%
All respondents Spouse/partner (n ¼ 187) Child (n ¼ 256) Other (n ¼ 61) Yes (n ¼ 248) No (n ¼ 256) None: 0e4 (n ¼ 269) Mild: 5e9 (n ¼ 127) Moderate: 10e14 (n ¼ 55) Moderately severe and severe: 15þ (n ¼ 42) None: 0e4 (n ¼ 319) Mild: 5e9 (n ¼ 105) Moderate: 10e14 (n ¼ 35) Severe: 15þ (n ¼ 29) Quartile 1: QODD # 57 (n ¼ 122) Quartile 2: 57 < QODD $ 74 (n ¼ 132) Quartile 3: 74 < QODD $ 86 (n ¼ 121) Quartile 4: QODD > 86 (n ¼ 125) Always/usually (n ¼ 44) Sometimes (n ¼ 164) Never (n ¼ 291) Yes (n ¼ 335) No (n ¼ 153)
44 12 30 2 22 22 16 6 7 14 15 8 12 7 23 13 3 3 N/A N/A N/A 12 31
8.8 6.6 12.0 3.3 9.2 8.7 6.1 4.8 13.0 35.0 4.8 7.7 34.3 25.9 19.8 9.8 2.5 2.5 N/A N/A N/A 3.6 20.4
164 64 78 19 78 83 74 53 17 13 97 34 16 8 42 47 41 29 N/A N/A N/A 92 68
32.9 35.4 31.1 31.7 32.5 32.9 28.0 42.4 31.5 32.5 31.1 32.7 45.7 29.6 36.2 35.6 34.7 23.8 N/A N/A N/A 27.5 44.7
291 105 143 39 140 147 174 66 30 13 200 62 7 12 51 72 74 90 N/A N/A N/A 230 53
58.3 58.0 57.0 65.0 58.3 58.3 65.9 52.8 55.6 32.5 64.1 59.6 20.0 44.4 44.0 54.5 62.7 73.8 N/A N/A N/A 68.9 34.9
Yes P-value 0.1419 0.9835 <0.0001b
<0.0001b
<0.0001b
<0.0001b
No
N
%
N
%
335 131 155 46 163 169 188 88 28 19 218 73 15 14 69 87 76 96 12 92 230 N/A N/A
68.6 74.0 63.0 79.3 69.4 68.7 72.9 71.0 54.9 48.7 71.5 71.6 44.1 51.9 59.5 68.0 66.7 80.0 27.9 57.5 81.3 N/A N/A
153 46 91 12 72 77 70 36 23 20 87 29 19 13 47 41 38 24 31 68 53 N/A N/A
31.4 26.0 37.0 20.7 30.6 31.3 27.1 29.0 45.1 51.3 28.5 28.4 55.9 48.1 40.5 32.0 33.3 20.0 72.1 42.5 18.7 N/A N/A
P-value 0.0106b 0.8752 0.0028b
0.0023b
0.0076b
Assessing the Quality of Death and Dying
NOK relationship
Sometimes
Clear Which Doctor in Charge of Loved One’s Care (n ¼ 488)a
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Table 3 Individual Question Responses by Patient and NOK Characteristics
<0.0001b
NOK ¼ next of kin; PHQ ¼ Patient Health Questionnaire; GAD ¼ General Anxiety Disorder; QODD ¼ Quality of Death and Dying; N/A ¼ not available. a Questions were only applicable to respondents who reported having two or more doctors involved in loved ones’ care. b P < 0.05.
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It is known that the dying process is associated with NOK depression or anxiety,18 and it is not unreasonable to think that this depression and anxiety may affect QODD scores. The relationship between the PHQ-8, GAD-7, and QODD was described using Spearman rank correlation coefficients. The PHQ-8 and GAD-7 surveys were strongly positively correlated (r ¼ 0.7581, P < 0.0001), whereas the QODD and PHQ-8 instruments were weakly negatively correlated (r ¼ 0.2258, P < 0.0001). This indicated a weak trend that PHQ-8 scores decreased as QODD scores increased. A similar correlation was shown for QODD and GAD-7 (r ¼ 0.2257, P < 0.0001).
Discussion We conducted a survey of the NOK of patients in an integrated health system in rural Pennsylvania who died between September 2011 and August 2012 in an attempt to assess the quality of the dying process, identify opportunities for improvement, and support strategies for targeting at-risk families and explore the relationships between the QODD, mental health questionnaires and questions regarding coordination of care. In this study, NOK generally reported high satisfaction with their care team and providers with the median score benchmarking at the high end of QODD scores reported by other institutions.19e21 Of note, factors associated with NOK reporting lower quality of the dying and death experience included: 1) the importance of the location of death (in-hospital associated with lower quality), 2) the length of time of poor health before death (the longer the illness, the lower the quality), 3) the number of physicians involved in care (the greater the number, the lower the quality), 4) and the quality of coordination between and among them (i.e., the receipt of confusing or conflicting information was associated with lower quality). There was neither association between time since death and QODD score nor did time since death impact QODD association with other factors, indicating that recall bias is not a concern for this particular survey. The quality of the dying process for NOK in this study who reported receiving conflicting information was 33% lower than the quality of the dying process for those who did not. Although this association is the finding of a single study in a single integrated and rurally based health system, we suggest that it deserves closer and broader scrutiny with the aim of encouraging efforts to improve clinician communication with the families of patients with advanced illness and at the end of life. Surveying and assessing the experiences of NOK who have recently lost loved ones is a challenge to organizations wishing to assess the quality of the dying
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process. The methodology needed to perform such assessments should be family centered and should be grounded in an acknowledgment of and respect for the grieving process and the psychological and emotional burdens that death often imposes on surviving caregivers. Although the risk of harm to the NOK of deceased patients should not be underestimated, we show here that it is possible to engage families in a process that may benefit other patients and loved ones within their community. This initiative was intended, in part, to supplement current national efforts to identify and reduce barriers to improved quality in end-of-life care. Important study limitations to be considered when interpreting our results include the following: 1) low response rate, 2) limited diversity of the NOK who participated in the survey (a predominantly white, rural, and older population), 3) use of mailed surveys several months after death contributing to potential recall bias, and 4) a survey population engaged primarily with a single health care institution for its health care. Additionally, the correlation between the receipt of confusing or conflicting information and the quality of the dying process is not necessarily causal. Despite these limitations, we suggest that the use of several instruments to clarify the interactions between mental health concerns, communication breakdowns, and perceptions of quality of care represents an important contribution to the measurement of quality in end-of-life care. Further investigation is warranted to more fully understand the complex interactions regarding families’ perceptions of communication breakdowns and quality of care to effectively design interventions to enhance communication between care teams and families at the end of life. In the current economic environment and in light of the demand to enhance the delivery of high value care, care for dying patients willdand shoulddcome under greater scrutiny as a potential opportunity to reduce costs and improve quality. Establishing measurements for the quality of the dying process and collecting data will be important to health care institutions seeking to enhance value of this complex and challenging aspect of health care.
Disclosures and Acknowledgments Support for this work was provided by internal funding through the GHS. No competing financial interests exist for any author of this article. The authors thank J. Randall Curtis, MD, MPH, Professor, Division of Pulmonary and Critical Care Medicine, who was a paid consultant with GHS and advised on survey instruments and analysis.
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11. Davison SN, Simpson C. Hope and advance care planning in patients with end stage renal disease: qualitative interview study. BMJ 2006;333:886e991.
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Supplementary Table 1 Measure Scores by Patient and NOK Characteristics PHQ Score (n ¼ 634)
QODD Score (n ¼ 657) Measures QODD score Patient age NOK age NOK sex NOK relationship NOK education level
Number of self-reported doctors PHQ-8
QODD score
73.6 69.5 73.5 75.0 71.8 75.0 73.8 73.7 73.7 73.1 75.3 69.3 79.3
(56.8, (52.9, (58.9, (56.8, (55.5, (57.6, (55.5, (58.1, (56.5, (54.3, (58.2, (56.3, (59.5,
86.2) 86.8) 85.8) 85.4) 84.5) 87.6) 84.4) 84.8) 86.7) 87.1) 85.8) 84.3) 91.9)
P-Value
0.5704 0.3765 0.4354 0.5102 0.4838
Median (IQR) 4 5 4 2 3 3 5 3 4 6 2 2 7
(1, (2, (1, (0, (1, (1, (2, (0, (1, (2, (0, (0, (1,
8) 8) 9) 7) 7) 7) 11) 7) 8) 10) 6) 6) 12)
P-Value
<0.0001b 0.0124b 0.0317b <0.0001b 0.0046b
Median (IQR) 2 3 3 1 3 1 3 1 3 3 2 1 4
(0, (0, (0, (0, (0, (0, (0, (0, (0, (0, (0, (0, (1,
6) 7) 7) 5) 6) 5) 8) 5) 6) 7) 6) 5) 8)
72.5 (56.5, 86.3)
4 (1, 8)
3 (0, 6)
73.5 (58.1, 85.0)
3 (0, 9)
2 (0, 7)
73.0 (53.3, 85.6)
3 (1, 6)
1 (0, 5)
73.2 (58.2, 85.2)
3 (0, 6)
1 (0, 5)
73.7 73.6 80.0 68.2 76.3 69.4
(55.5, (58.1, (61.4, (50.6, (59.5, (54.4,
87.1) 85.3) 89.0) 82.9) 87.7) 82.7)
78.8 76.5 73.7 76.0 69.8 73.7 55.0
(46.0, (59.7, (57.2, (61.1, (54.4, (53.4, (26.8,
88.8) 89.1) 86.1) 88.4) 85.3) 83.7) 78.6)
75.9 74.7 63.9 52.8
(59.5, (59.5, (47.5, (24.4, N/A N/A
88.2) 84.1) 75.8) 73.0)
0.9309 <0.0001b
0.1391 <0.0001b
<0.0001b
N/A
5 2 4 4 4 3
(2, (0, (1, (1, (1, (0,
10) 6) 7) 8) 9) 8)
5 (1, 8) 3 (0, 6) 4 (1, 8) N/A N/A N/A N/A 2 8 11 17 6 3
(0, 4) (5, 11) (8, 15) (11, 19) (2, 11) (1, 7)
<0.0001b 0.1505
0.0595 N/A
<0.0001b
<0.0001b
3 1 2 3 3 1 5 2 2 0 5 8 14
(0, (0, (0, (0, (0, (0,
7) 5) 6) 7) 7) 5)
(0, 9) (0, 6) (0, 6) (0, 2) (2, 7) (6, 10) (10, 17)
N/A N/A N/A N/A 4 (0, 9) 3 (0, 6)
N/A
3 (0, 8)
1 (0, 6)
N/A
2 (0, 6)
1 (0, 4)
P-Valuea 0.0094b 0.0259b 0.0145b 0.0055b 0.0735
0.0003b 0.2012
0.3429 <0.0001b
N/A
<0.0001b
(Continued)
Vol. 50 No. 3 September 2015
GAD-7
All respondents 65e74 (n ¼ 133) 75e84 (n ¼ 288) 85þ (n ¼ 251) 18e59 (n ¼ 234) 60e79 (n ¼ 336) 80e99 (n ¼ 88) Male (n ¼ 180) Female (n ¼ 482) Spouse/partner (n ¼ 237) Child (n ¼ 335) Other (n ¼ 88) Less than high school (n ¼ 37) High school diploma or GED (n ¼ 224) Some college or trade school (n ¼ 169) Four-year college degree (n ¼ 98) Graduate or professional school (n ¼ 131) Yes (n ¼ 313) No (n ¼ 347) At home (n ¼ 210) In a hospital (n ¼ 177) In hospice (n ¼ 71) In a nursing home or other long-term care/facility (n ¼ 182) Other (n ¼ 15) 0e1 (n ¼ 113) 2þ (n ¼ 511) None (0e4) n ¼ 351 Mild (5e9) n ¼ 166 Moderate (10e14) n ¼ 69 Moderately severe and severe (15þ) n ¼ 48 None (0e4) n ¼ 417 Mild (5e9) n ¼ 134 Moderate (10e14) n ¼ 47 Severe (15þ) n ¼ 34 Quartile 1 QODD # 57 (n ¼ 165) Quartile 2 57 < QODD $ 74 (n ¼ 170) Quartile 3 74 < QODD $ 86 (n ¼ 157) Quartile 4 QODD > 86 (n ¼ 165)
Median (IQR)
GAD Score (n ¼ 632) a
Darer et al.
Lived with patient vs. not Location of death
Category
a
QODD Score (n ¼ 657) Measures Question 53dcontradictory informationc Question 54dclear who in chargec Question 55dillness progressionc
Category
51.2 71.8 76.2 72.3 68.0 70.8
(34.0, 69.0) (55.5, 83.2) (61.4, 89.0) (59.4, 88.0) (51.4 79.5) (55.2, 81.8)
P-Value
<0.0001b 0.0004b 0.0079b
Median (IQR) 9 5 3 3 5 5
(2, (1, (0, (1, (2, (1,
16) 8) 6) 7) 10) 9)
GAD Score (n ¼ 632) a
P-Value
<0.0001b 0.0003b 0.2464
Median (IQR) 8 2 1 2 3 3
(1, (0, (0, (0, (0, (0,
12) 7) 5) 6) 9) 7)
76.1 (58.9, 86.7)
2 (1, 7)
2 (0, 5)
75.0 (57.9, 87.7)
3 (1, 7)
2 (0, 6)
81.7 (67.2 91.7)
3 (1, 8)
3 (0, 7)
P-Valuea <0.0001b 0.0050b 0.5477
NOK ¼ next of kin; QODD ¼ Quality of Death and Dying; PHQ ¼ Patient Health Questionnaire; GAD ¼ General Anxiety Disorder; IQR ¼ interquartile range; GED ¼ General Educational Development; N/A ¼ not available. a P-values for QODD, PHQ, and GAD score differences are from the Kruskal-Wallis test. b P < 0.05. c Only NOK who indicated more than one physician (n ¼ 511) were asked to answer Questions 53e55.
Assessing the Quality of Death and Dying
Always/usually (n ¼ 44) Sometimes (n ¼ 164) Never (n ¼ 291) Yes (n ¼ 335) No (n ¼ 153) Sick for most of the last six months (n ¼ 224) Healthy for part of the last six months and gradually declined (n ¼ 79) Healthy for most of the last six months and rapidly declined (n ¼ 142) Healthy and suddenly stricken shortly before death (n ¼ 59)
Median (IQR)
PHQ Score (n ¼ 634) a
Vol. 50 No. 3 September 2015
Supplementary Table 1 Continued
349.e2
349.e3
Supplementary Table 2 Individual Question Responses by Patient and NOK Characteristics Confusing or Contradictory Information (n ¼ 499)a Always/ Usually Measures Patient age NOK age NOK sex NOK relationship NOK education level
PHQ-8
GAD-7
Question 53d contradictory information
Yes
Category
N
%
N
%
N
%
All respondents 65e74 (n ¼ 103) 75e84 (n ¼ 223) 85þ (n ¼ 185) 18e59 (n ¼ 181) 60e79 (n ¼ 260) 80e99 (n ¼ 62) Male (n ¼ 140) Female (n ¼ 365) Spouse/partner (n ¼ 187) Child (n ¼ 256) Other (n ¼ 61) Less than high school (n ¼ 25) High school diploma or GED (n ¼ 154) Some college or trade school (n ¼ 132) Four-year college degree (n ¼ 85) Graduate or professional school (n ¼ 108) Yes (n ¼ 248) No (n ¼ 256) At home (n ¼ 169) In a hospital (n ¼ 132) In hospice (n ¼ 61) In a nursing home or other long-term care/facility (n ¼ 129) Other (n ¼ 11) None: 0e4 (n ¼ 269) Mild: 5e9 (n ¼ 127) Moderate: 10e14 (n ¼ 55) Moderately severe and severe: 15þ (n ¼ 42) None: 0e4 (n ¼ 319) Mild: 5e9 (n ¼ 105) Moderate: 10e14 (n ¼ 35) Severe: 15þ (n ¼ 29) Quartile 1: QODD # 57 (n ¼ 122) Quartile 2: 57 < QODD $ 74 (n ¼ 132) Quartile 3: 74 < QODD $ 86 (n ¼ 121) Quartile 4: QODD > 86 (n ¼ 125) Always/usually (n ¼ 44) Sometimes (n ¼ 164) Never (n ¼ 291)
44 9 21 14 23 18 3 12 32 12 30 2 3 13 10 9 9
8.8 8.9 9.6 7.8 12.8 7.1 5.1 8.7 9.0 6.6 12.0 3.3 12.5 8.7 7.6 10.8 8.6
164 29 74 61 59 80 21 49 112 64 78 19 3 47 40 34 37
32.9 28.7 33.9 33.9 32.8 31.7 35.6 35.5 31.5 35.4 31.1 31.7 12.5 31.5 30.5 41.0 35.2
291 63 123 105 98 154 35 77 211 105 143 39 18 89 81 40 59
58.3 62.4 56.4 58.3 54.4 61.1 59.3 55.8 59.4 58.0 57.0 65.0 75.0 59.7 61.8 48.2 56.2
22 22 10 17 9 8
9.2 8.7 6.1 13.0 15.0 6.3
78 83 53 45 13 44
32.5 32.9 32.5 34.4 21.7 34.9
140 147 100 69 38 74
58.3 58.3 61.3 52.7 63.3 58.7
0 16 6 7 14
0.0 6.1 4.8 13.0 35.0
3 74 53 17 13
30.0 28.0 42.4 31.5 32.5
7 174 66 30 13
70.0 65.9 52.8 55.6 32.5
15 8 12 7 23 13 3 3 N/A N/A N/A
4.8 7.7 34.3 25.9 19.8 9.8 2.5 2.5 N/A N/A N/A
97 34 16 8 42 47 41 29 N/A N/A N/A
31.1 32.7 45.7 29.6 36.2 35.6 34.7 23.8 N/A N/A N/A
200 62 7 12 51 72 74 90 N/A N/A N/A
64.1 59.6 20.0 44.4 44.0 54.5 62.7 73.8 N/A N/A N/A
P-Value 0.8319 0.2089 0.7000 0.1419 0.3303
0.9835 0.1471
<0.0001b
<0.0001b
<0.0001b
No
N
%
N
%
335 75 146 114 113 180 39 95 238 131 155 46 17 105 88 54 68
68.6 75.8 68.5 64.8 63.8 73.2 68.4 70.9 68.4 74.0 63.0 79.3 77.3 71.4 71.0 64.3 65.4
153 24 67 62 64 66 18 39 110 46 91 12 5 42 36 30 36
31.4 24.2 31.5 35.2 36.2 26.8 31.6 29.1 31.6 26.0 37.0 20.7 22.7 28.6 29.0 35.7 34.6
163 169 114 83 39 84
69.4 68.7 73.5 63.8 65.0 67.7
72 77 41 47 21 40
30.6 31.3 26.5 36.2 35.0 32.3
10 188 88 28 19
100.0 72.9 71.0 54.9 48.7
0 70 36 23 20
0.0 27.1 29.0 45.1 51.3
218 73 15 14 69 87 76 96 12 92 230
71.5 71.6 44.1 51.9 59.5 68.0 66.7 80.0 27.9 57.5 81.3
87 29 19 13 47 41 38 24 31 68 53
28.5 28.4 55.9 48.1 40.5 32.0 33.3 20.0s 72.1 42.5 18.7
P-Value 0.1691 0.1214 0.5940 0.0106b 0.5844
0.8752 0.0870
0.0028b
0.0023b
0.0076b
<0.0001b
(Continued)
Vol. 50 No. 3 September 2015
QODD score
Never
Darer et al.
Lived with patient vs. not Location of death
Sometimes
Clear Which Doctor in Charge of Loved One’s Care (n ¼ 488)a
Confusing or Contradictory Information (n ¼ 499)a Always/ Usually Measures Question 54dclear who in charge Question 55dillness progression
Category
%
N
%
Never N
Yes %
P-Value <0.0001
b
No
N
%
N
%
P-Value
N/A N/A 147
N/A N/A 67.7
N/A N/A 70
N/A N/A 32.3
0.7402
12 31 24
3.6 20.4 11.0
92 68 76
27.5 44.7 34.7
230 53 119
68.9 34.9 54.3
7
9.0
22
28.2
49
62.8
54
70.1
23
29.9
10
7.1
46
32.9
84
60.0
91
65.9
47
34.1
3
5.4
35
62.5
18
32.1
37
74.0
13
26.0
0.6544
NOK ¼ next of kin; GED ¼ General Educational Development; PHQ ¼ Patient Health Questionnaire; GAD ¼ General Anxiety Disorder; QODD ¼ Quality of Death and Dying; N/A ¼ not available. a Questions were only applicable to respondents who reported having two or more doctors involved in loved ones’ care. b P < 0.05.
Assessing the Quality of Death and Dying
Yes (n ¼ 335) No (n ¼ 153) Sick for most of the last six months (n ¼ 224) Healthy for part of the last six months and gradually declined (n ¼ 79) Healthy for most of the last six months and rapidly declined (n ¼ 142) Healthy and suddenly stricken shortly before death (n ¼ 59)
N
Sometimes
Clear Which Doctor in Charge of Loved One’s Care (n ¼ 488)a
Vol. 50 No. 3 September 2015
Supplementary Table 2 Continued
349.e4
349.e5
Supplementary Table 3 Multivariate Models for QODD, PHQ, and GAD Scores Outcome ¼ QODD Score Model Variables
95% CI
71.70 70.17 68.64
(68.34, 75.05) (67.16, 73.17) (65.50, 71.77)
71.79 70.59 68.18
(68.21, 75.37) (67.41, 73.77) (65.14, 71.23)
* * *
* * *
* * *
* * *
71.87 67.21
(67.75, 75.99) (63.88, 70.54)
* *
* *
* * *
Outcome ¼ GAD Score
Estimate
95% CI
P-Value
Estimate
95% CI
P-Value
* * *
* * *
* * *
* * *
* * *
* * *
* * *
* * *
* * *
* * *
5.78 5.50 5.27
(4.98, 6.58) (4.79, 6.21) (4.48, 6.07)
4.93 4.49 4.12
(4.17, 5.70) (3.80, 5.18) (3.35, 4.89)
5.59 5.52 5.44
(4.71, 6.47) (4.81, 6.24) (4.64, 6.24)
4.57 4.52 4.44
(3.78, 5.37) (3.82, 5.21) (3.64, 5.25)
4.38 6.66
(3.33, 5.44) (5.91, 7.40)
3.84 5.19
(2.84, 4.84) (4.47, 5.90)
* *
5.79 5.25
(5.06, 6.51) (4.30, 6.21)
4.83 4.20
(4.12, 5.54) (3.29, 5.11)
* * *
* * *
6.27 5.21 5.08
(4.99, 7.56) (4.29, 6.13) (3.82, 6.34)
4.34 4.71 4.49
(3.16, 5.52) (3.79, 5.62) (3.30, 5.68)
* * * * *
* * * * *
* * * * *
7.34 5.64 5.61 4.28 4.73
(5.37, (4.77, (4.67, (3.15, (3.66,
* * * * *
* * * * *
* *
* *
* * <0.0001
6.22 4.82
(5.25, 7.20) (3.93, 5.71)
4.84 4.19
(3.90, 5.78) (3.35, 5.03)
* * * * *
* * * * *
* * * * *
* * * * *
* * * * *
* * *
* * *
* * *
4.07 3.86 5.61
(3.39, 4.75) (3.07, 4.65) (4.18, 7.04)
P-Value 0.0148
0.0070
* * *
* * * 0.1700
0.7446 * * * 0.0415
* * * 0.0165
0.7504
0.0001
0.0114
0.2601
0.1546
0.4002
0.8699
Darer et al.
0.0348 9.31) 6.50) 6.55) 5.42) 5.80) 0.0227
75.24 67.14 73.96 66.78 64.58 * * *
(71.92, (63.80, (69.03, (63.52, (53.82, * * *
78.55) 70.47) 78.89) 70.05) 75.35) * * *
* * * * * 0.2515
* * * * * 0.0721
(Continued)
Vol. 50 No. 3 September 2015
PHQ-2 score PHQ-2 ¼ 0 (25th percentile) PHQ-2 ¼ 1 (median) PHQ-2 ¼ 2 (75th percentile) GAD score GAD ¼ 0 (25th percentile) GAD ¼ 2 (median) GAD ¼ 6 (75th percentile) Patient age Age ¼ 76 (25th percentile) Age ¼ 82 (median) Age ¼ 87 (75th percentile) NOK age Age ¼ 56 (25th percentile) Age ¼ 64 (median) Age ¼ 74 (75th percentile) Number of doctors (self-reported) 0e1 2þ NOK gender Female Male NOK relationship Spouse/partner Child Other NOK education level Less than high school High school diploma or GED Some college or trade school Four-year college degree Graduate or professional school Lived with Yes No Death location Home Hospital Hospice Nursing home Other Number of inpatient visits 0 1e2 3þ
Estimate
Outcome ¼ PHQ Score
Outcome ¼ QODD Score Model Variables
*
95% CI
P-Value
Estimate
95% CI
<0.0001 58.08 69.61 73.93
(51.59, 64.57) (65.69, 73.54) (70.55, 77.31)
67.71 66.70
(64.01, 71.42) (62.63, 70.77)
63.26
Outcome ¼ GAD Score P-Value
Estimate
95% CI
<0.0001 9.12 5.99 4.86
(7.55, 10.69) (5.07, 6.91) (4.04, 5.68)
5.88 7.43
(5.02, 6.75) (6.47, 8.39)
(59.70, 66.83)
*
*
67.65
(62.43, 72.86)
*
66.47
(62.26, 70.68)
71.45
(65.47, 77.43)
P-Value <0.0001
7.50 4.50 3.57
(6.02, 8.97) (3.64, 5.35) (2.77, 4.37)
4.79 5.59
(3.97, 5.61) (4.67, 6.50)
*
*
*
*
*
*
*
*
*
*
*
*
*
*
*
*
*
*
*
*
*
0.6223
0.0042
0.1137
0.0343
Variable wasn’t included in the model for that outcome. QODD ¼ Quality of Death and Dying; PHQ ¼ Patient Health Questionnaire; GAD ¼ General Anxiety Disorder; NOK ¼ next of kin; GED ¼ General Educational Development.
Assessing the Quality of Death and Dying
Confusing/contradictory information Always/usually Sometimes Never Clear which doctor was in charge Yes No Illness progression Sick for most of the last six months Healthy part of the last six months and then gradual decline Rapid decline one to two months before death Suddenly stricken
Estimate
Outcome ¼ PHQ Score
Vol. 50 No. 3 September 2015
Supplementary Table 3 Continued
349.e6
Journal of Pain and Symptom Management 343
Original Article
Assessing the Quality of Death and Dying in an Integrated Health Care System in Rural Pennsylvania Jonathan D. Darer, MD, MPH, Desera e N. Clarke, MPA, Amanda C. Sees, BA, Andrea L. Berger, MAS, H. Lester Kirchner, PhD, Rebecca A. Stametz, DEd, MPH, and Daniel Davis, PhD Center for Clinical Innovation (J.D.D., D.N.C., A.C.S., R.A.S.), Center for Health Research (A.L.B., H.L.K.), and Center for Bioethics (D.D.), Geisinger Health System, Danville, Pennsylvania, USA
Abstract Context. With growing emphasis on improving the value of health care, there is increased scrutiny of quality outcomes and high health expenditures during the final months of life. Objectives. The purpose of this project is to answer 1) how do next of kin (NOK) perceive the quality of their loved ones’ dying and death; 2) are there patient and NOK characteristics that predict lower quality; and 3) are there structural aspects of care associated with lower quality? Methods. A mailed survey was administered to a stratified random sample of NOK of Geisinger Health System patients who had died in the past year. The Quality of Death and Dying, the General Anxiety Disorder seven-item scale, the Patient Health Questionnaire eight-item depression scale, and selected questions from the Toolkit of Instruments to Measure End of Life Care were used. Results. There were 672 respondents. Significant predictors of Quality of Death and Dying score were number of doctors involved in care (P ¼ 0.0415), location of death (P < 0.0001), frequency of receiving confusing or contradictory information (P < 0.0001), illness progression (P ¼ 0.0343), Patient Health Questionnaire-2 score (P ¼ 0.0148), and General Anxiety Disorder seven-item scale score (P < 0.0070). Conclusion. Several findings suggest that factors such as NOK depression and anxiety, prolonged illness, dying in the hospital, receipt of conflicting information, and confusion around the doctor in charge are associated with lower quality of the dying and death experience for NOK. Further investigation is warranted to facilitate high-quality measurement and the use of measurement results to improve care. J Pain Symptom Manage 2015;50:343e349. Ó 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved. Key Words End-of-life care, quality of dying and death, next of kin, conflicting information
Introduction With the growing emphasis on improving value in health care delivery, there is increased scrutiny of both the quality of health outcomes and the high health expenditures during the last few months of life.1 As noted by Provonost and Angus,2 traditional models of value measurement, for example, ‘‘increases in quality adjusted life years divided by costs,’’ are nonsensical when applied to the deceased. Developing
Address correspondence to: Deserae N. Clarke, MPA, Center for Clinical Innovation, Geisinger Health System, 100 N. Academy Avenue, Danville, PA 17821, USA. E-mail: dnclarke@ geisinger.edu Ó 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
accurate methods to measure the quality of the dying process is a necessary step toward delivering greater health value to dying patients and their families. Deficits in understanding the experiences of patients and families,3,4 failures in communication and care coordination,3 and an often misguided emphasis on high-intensity treatment despite poor prognoses3,5 are prominent well-documented barriers to advancing the quality of care for patients at the end of life. There has been little attention paid to the dying process as a Accepted for publication: March 12, 2015.
0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2015.03.011
344
Darer et al.
performance measure for health care systems or health plans. The purpose of this project is to answer three questions about end-of-life outcomes in the Geisinger Health System (GHS) located in rural Pennsylvania: 1) how do next of kin (NOK) perceive the quality of dying and death experienced by their loved ones; 2) are there patient and NOK characteristics that predict lower quality; and 3) what structural aspects of care delivery, such as frequency of receiving confusing or contradictory information, clarity of which doctor was in charge, and number of doctors involved in care, are associated with lower quality? It is known that patients with such chronic conditions as end-stage renal disease (ESRD), congestive heart failure (CHF), and chronic obstructive pulmonary disease (COPD) are at greater risk for dying experiences of poor quality;3,6e11 thus, these populations were oversampled for analysis and future initiatives.
Methods GHS is an integrated health system providing care to more than 2.6 million residents throughout 44 counties in central and northeastern Pennsylvania. The population is generally older than the average for the U.S., with a heavier burden of chronic disease. A random sample of deceased patients was drawn from the electronic health record. Patients were eligible for selection if they were older than 65 years at the date of death. Additionally, they had to have had at least one outpatient visit within the two years before death and died between three and 15 months before the administration of the survey. Patients with ESRD, CHF, and COPD on their electronic health record problem list were oversampled; any patient with one of these three diseases was included in the sample. Of the remaining patients who did not have ESRD, CHF, or COPD, a random sample was included. A survey was mailed to the listed NOK of the selected sample of deceased patients. To obtain the mailing addresses of NOK, we used the emergency contact field in the deceased patient’s chart. A modified Dillman method12 was used for mailing the survey. The mailing packet included spiritual care information, a notification letter explaining the initiative, and instructions for opting out of the project. The initial survey was sent to the full sample. After three weeks, NOK who had not asked to be removed from the project were called by a member of the project team to confirm receipt of the questionnaire and inquire about interest in participation. Those interested in participating were sent a follow-up letter explaining the project in more detail and a copy of the survey to complete and return by mail.
Vol. 50 No. 3 September 2015
Geisinger’s institutional review board reviewed and declared this initiative to be a quality assurance project and thus exempt under the federal regulations governing human subjects research.
Questionnaire The survey questionnaire comprised the Quality of Death and Dying instrument (QODD), the General Anxiety Disorder seven-item scale (GAD-7), the Patient Health Questionnaire eight-item depression scale (PHQ-8), selected questions from the Toolkit of Instruments to Measure End of Life Care, and questions created by the project team. The QODD is a 25-item measure of the quality of death and dying as perceived by NOK.13 The GAD-7 and PHQ-8 were used to assess NOK for symptoms of anxiety and depression. The brief two-question version of the PHQ (PHQ-2) also was considered for analysis purposes. A series of questions related to coordination and continuity of care and location of death were added from the Toolkit of Instruments to Measure End of Life Care.14 Finally, the research team added a question regarding illness progression at the end of life.
Statistical Analysis Scoring instructions of each survey instrument were followed. An overall QODD score was calculated if the respondent answered at least one of the 22 questions used for scoring. Possible overall scores ranged from 0 to 100 (low quality to high quality).15 An overall PHQ score was calculated if the NOK responded to all eight questions. Possible overall scores ranged from 0 to 24 (no symptoms of depression to severe depressive symptoms).16 Similarly, an overall GAD score was calculated only if the NOK responded to all seven questions, with a range from 0 to 21 (no symptoms of anxiety to severe anxiety symptoms).17 Characteristics of deceased patients, NOK, the quality of the dying process, and coordination of care and conflicting information are summarized using the mean and SD or, for skewed distributions, the median and interquartile range (IQR) for continuous variables; categorical variables are presented using frequency counts and percentages. Comparisons between respondents and nonrespondents were tested using the Wilcoxon rank sum test, Pearson’s Chisquared test, or Fisher’s exact test, as appropriate. To identify patient or NOK characteristics and structural aspects of care delivery associated with lower quality of the dying process, a series of linear regression models were fit. Models were constructed using both the PHQ-8 and PHQ-2 scores. Because both models produced similar results, the PHQ-2 was used in the
Vol. 50 No. 3 September 2015
Assessing the Quality of Death and Dying
final models. Variable selection was based on significant bivariate results (P # 0.05). Model results are presented with estimated marginal means with corresponding 95% CIs and P-values. Additionally, univariate analysis to measure variable association with receipt of conflicting information and clarity of who was in charge was performed. Associations were tested using either Pearson’s Chi-squared test or Fisher’s exact test based on the variable. All analyses were conducted using SAS version 9.3 (SAS Institute, Inc., Cary, NC).
Results Of 4655 decedents who met the inclusion criteria, the NOK of 2644 were selected for the QODD survey. Of these, 1017 patients had a history of COPD, ESRD, or CHF, and thus their NOK were included in survey outreach. The remaining 1627 patients were identified via a random sample of patients with no history of COPD, ESRD, or CHF. Deceased patients (whose NOK received surveys) were on average of 81.0 years; 48.3% were females and 99.4% were Caucasian. A total of 672 NOK responded to the survey, for a response rate of 25.4%. No significant differences were observed in characteristics of decedents by NOK response (Table 1). The NOK respondents were predominantly females (72.8%), white (98.5%), and 60 years or older (64.4%). They were most frequently a spouse or partner (35.9%) or a child (50.8%) of the deceased patient, and nearly half (47.4%) lived with the patient. Most had a high school diploma or some college education (59.6%), and many had a four-year college degree or higher (34.7%) (Table 2). There were 657 (98%) survey respondents with calculated QODD scores. The median score was 73.6 (IQR 56.8e86.2). There were 634 (94%) respondents with available PHQ-8 scores, with a median of 4 (IQR 1e8). There were 632 (94%) respondents with
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available GAD-7 scores, with a median of 2 (IQR 0e6) (Table 2). In univariate analysis, the patient and NOK characteristics associated with poor QODD scores were the PHQ-8 scores (P < 0.0001), the GAD-7 scores (P < 0.0001), and illness progression. Patients who were sick for most of the last six months of life had lower scores reported by NOK than patients who were relatively healthy and then suddenly stricken (70.8 vs. 81.7, P ¼ 0.0079) (Table 2). PHQ-2 (P ¼ 0.0148), GAD-7 (P ¼ 0.0070), and illness progression (P ¼ 0.0343) also remained significant in the final regression model (Supplementary Table 1, available at jpsmjournal.com). The structural aspects of care that affected the QODD score in univariate analysis were location of death, receipt of contradictory information, and whether NOK were clear about the physicians in charge of their loved ones. Lower QODD scores were associated with dying in the hospital (68.2) compared with dying at home (80.0) or dying in hospice (76.3) (P < 0.0001). There were 499 responses to the question about the frequency of receiving confusing or conflicting information, a question that was answered only by NOK who reported that their loved one saw two or more doctors for care. Nearly half of these reported receiving contradictory information sometimes (32.9%), usually, or always (8.8%). NOK who received contradictory information sometimes, usually, or always had worse PHQ scores (P < 0.0001), worse GAD scores (P < 0.0001), and lower QODD scores (P < 0.0001) (Table 3). QODD scores were 33% lower when the NOK always or usually received contradictory information (51.2) compared with those who never received contradictory information regarding their loved one’s care (76.2) (P < 0.0001). Similarly, when NOK were unclear which physician was in charge, the QODD scores were lower (68.0 vs. 72.3, P ¼ 0.0004) (Table 2).
Table 1 Comparison of Respondents and Nonrespondents Based on the Total Selected NOK Population for the QODD Survey (n ¼ 2644) Nonresponse (n ¼ 1972)
Responded (n ¼ 672) Patient Characteristic Age Gender Race Location of death GHS PCP
Total Population (n ¼ 2644)
Category
N
Mean (SD)/%
N
Mean (SD)/%
P-value
N
Mean (SD)/%
Age Male Female White Other GHS inpatient Not GHS inpatienta Yes No
672 344 328 667 4 72 600 207 465
81.5 (7.6) 51.2 48.8 99.4 0.6 10.7 89.3 30.8 69.2
1972 1021 948 1957 12 163 1809 546 1426
80.9 (8.4) 51.9 48.1 99.4 0.6 8.3 91.7 27.7 72.3
0.0759 0.7664
2644 1365 1276 2624 16 235 2409 753 1891
81.0 (8.2) 51.7 48.3 99.4 0.6 8.9 91.1 28.5 71.5S
1.0000 0.0541 0.1222
NOK ¼ next of kin; QODD ¼ Quality of Death and Dying; GHS ¼ Geisinger Health System; PCP ¼ primary care physician. a Not GHS inpatient refers to all patients who died without a current admission to a Geisinger facility (e.g., nursing home, other inpatient hospital, etc.).
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Table 2 Measure Scores by Patient and NOK Characteristics QODD Score (n ¼ 657) Measures QODD score Patient age NOK age NOK sex NOK relationship NOK education level
Lived with patient vs. not Location of death
Number of self-reported doctors PHQ-8
GAD-7
Question 53dcontradictory informationc Question 54dclear who in chargec Question 55dillness progressionc
Category All respondents 65e74 (n ¼ 133) 75e84 (n ¼ 288) 85þ (n ¼ 251) 18e59 (n ¼ 234) 60e79 (n ¼ 336) 80e99 (n ¼ 88) Male (n ¼ 180) Female (n ¼ 482) Spouse/partner (n ¼ 237) Child (n ¼ 335) Other (n ¼ 88) Less than high school (n ¼ 37) High school diploma or GED (n ¼ 224) Some college or trade school (n ¼ 169) Four-year college degree (n ¼ 98) Graduate or professional school (n ¼ 131) Yes (n ¼ 313) No (n ¼ 347) At home (n ¼ 210) In a hospital (n ¼ 177) In hospice (n ¼ 71) In a nursing home or other long-term care/facility (n ¼ 182) Other (n ¼ 15) 0e1 (n ¼ 113) 2þ (n ¼ 511) None (0e4) n ¼ 351 Mild (5e9) n ¼ 166 Moderate (10e14) n ¼ 69 Moderately severe and severe (15þ) n ¼ 48 None (0e4) n ¼ 417 Mild (5e9) n ¼ 134 Moderate (10e14) n ¼ 47 Severe (15þ) n ¼ 34 Always/usually (n ¼ 44) Sometimes (n ¼ 164) Never (n ¼ 291) Yes (n ¼ 335) No (n ¼ 153) Sick for most of the last six months (n ¼ 224) Healthy for part of the last six months and gradually declined (n ¼ 79) Healthy for most of the last six months and rapidly declined (n ¼ 142) Healthy and suddenly stricken shortly before death (n ¼ 59)
Median (IQR) 73.6 69.5 73.5 75.0 71.8 75.0 73.8 73.7 73.7 73.1 75.3 69.3 79.3 72.5 73.5 73.0 73.2 73.7 73.6 80.0 68.2 76.3 69.4
(56.8, (52.9, (58.9, (56.8, (55.5, (57.6, (55.5, (58.1, (56.5, (54.3, (58.2, (56.3, (59.5, (56.5, (58.1, (53.3, (58.2, (55.5, (58.1, (61.4, (50.6, (59.5, (54.4,
86.2) 86.8) 85.8) 85.4) 84.5) 87.6) 84.4) 84.8) 86.7) 87.1) 85.8) 84.3) 91.9) 86.3) 85.0) 85.6) 85.2) 87.1) 85.3) 89.0) 82.9) 87.7) 82.7)
78.8 76.5 73.7 76.0 69.8 73.7 55.0 75.9 74.7 63.9 52.8 51.2 71.8 76.2 72.3 68.0 70.8 76.1
(46.0, 88.8) (59.7, 89.1) (57.2, 86.1) (61.1, 88.4) (54.4, 85.3) (53.4, 83.7) (26.8, 78.6) (59.5, 88.2) (59.5, 84.1) (47.5, 75.8) (24.4, 73.0) (34.0, 69.0) (55.5, 83.2) (61.4, 89.0) (59.4, 88.0) (51.4 79.5) (55.2, 81.8) (58.9, 86.7)
P-valuea 0.5704 0.3765 0.4354 0.5102 0.4838
0.9309 <0.0001b
0.1391 <0.0001b
<0.0001b
<0.0001b 0.0004b 0.0079b
75.0 (57.9, 87.7) 81.7 (67.2 91.7)
NOK ¼ next of kin; QODD ¼ Quality of Death and Dying; IQR ¼ interquartile range; GED ¼ General Educational Development; PHQ ¼ Patient Health Questionnaire; GAD ¼ General Anxiety Disorder. a P-values for QODD are from the Kruskal-Wallis test. b P < 0.05. c Only NOK who indicated more than one physician (n ¼ 511) were asked to answer Questions 53e55.
Significant structural predictors of QODD score in the multivariate model were number of doctors involved in care (P ¼ 0.0415), location of death (P < 0.0001), frequency of confusing or contradictory information (P < 0.0001), and illness progression (P ¼ 0.0343). Clarity over which doctor was in charge was not a significant predictor of QODD score in the multivariate model (Supplementary Tables 2 and 3, available at jpsmjournal.com). There were 488 responses to the question about whether NOK were clear about which doctors were
in charge of their loved ones’ care. Most NOK reported that it was clear who was in charge of care (68.6%). Children of the patient were less likely to have clarity around who was in charge (63.0%) than spouses/partners (74.0%) or those who reported their relationship as other (79.3%) (P ¼ 0.0106). NOK who were clear who was in charge of care had better PHQ scores (P ¼ 0.0028), better GAD scores (P ¼ 0.0023), and higher QODD scores (P ¼ 0.0076). They also reported a lower frequency of receiving confusing or contradictory information (P < 0.0001) (Table 3).
Confusing or Contradictory Information (n ¼ 499)a Always/ Usually Measures
Lived with patient vs. not PHQ-8
GAD-7
QODD score
Question 53dcontradictory information Question 54dclear who in charge
Never
Category
N
%
N
%
N
%
All respondents Spouse/partner (n ¼ 187) Child (n ¼ 256) Other (n ¼ 61) Yes (n ¼ 248) No (n ¼ 256) None: 0e4 (n ¼ 269) Mild: 5e9 (n ¼ 127) Moderate: 10e14 (n ¼ 55) Moderately severe and severe: 15þ (n ¼ 42) None: 0e4 (n ¼ 319) Mild: 5e9 (n ¼ 105) Moderate: 10e14 (n ¼ 35) Severe: 15þ (n ¼ 29) Quartile 1: QODD # 57 (n ¼ 122) Quartile 2: 57 < QODD $ 74 (n ¼ 132) Quartile 3: 74 < QODD $ 86 (n ¼ 121) Quartile 4: QODD > 86 (n ¼ 125) Always/usually (n ¼ 44) Sometimes (n ¼ 164) Never (n ¼ 291) Yes (n ¼ 335) No (n ¼ 153)
44 12 30 2 22 22 16 6 7 14 15 8 12 7 23 13 3 3 N/A N/A N/A 12 31
8.8 6.6 12.0 3.3 9.2 8.7 6.1 4.8 13.0 35.0 4.8 7.7 34.3 25.9 19.8 9.8 2.5 2.5 N/A N/A N/A 3.6 20.4
164 64 78 19 78 83 74 53 17 13 97 34 16 8 42 47 41 29 N/A N/A N/A 92 68
32.9 35.4 31.1 31.7 32.5 32.9 28.0 42.4 31.5 32.5 31.1 32.7 45.7 29.6 36.2 35.6 34.7 23.8 N/A N/A N/A 27.5 44.7
291 105 143 39 140 147 174 66 30 13 200 62 7 12 51 72 74 90 N/A N/A N/A 230 53
58.3 58.0 57.0 65.0 58.3 58.3 65.9 52.8 55.6 32.5 64.1 59.6 20.0 44.4 44.0 54.5 62.7 73.8 N/A N/A N/A 68.9 34.9
Yes P-value 0.1419 0.9835 <0.0001b
<0.0001b
<0.0001b
<0.0001b
No
N
%
N
%
335 131 155 46 163 169 188 88 28 19 218 73 15 14 69 87 76 96 12 92 230 N/A N/A
68.6 74.0 63.0 79.3 69.4 68.7 72.9 71.0 54.9 48.7 71.5 71.6 44.1 51.9 59.5 68.0 66.7 80.0 27.9 57.5 81.3 N/A N/A
153 46 91 12 72 77 70 36 23 20 87 29 19 13 47 41 38 24 31 68 53 N/A N/A
31.4 26.0 37.0 20.7 30.6 31.3 27.1 29.0 45.1 51.3 28.5 28.4 55.9 48.1 40.5 32.0 33.3 20.0 72.1 42.5 18.7 N/A N/A
P-value 0.0106b 0.8752 0.0028b
0.0023b
0.0076b
Assessing the Quality of Death and Dying
NOK relationship
Sometimes
Clear Which Doctor in Charge of Loved One’s Care (n ¼ 488)a
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Table 3 Individual Question Responses by Patient and NOK Characteristics
<0.0001b
NOK ¼ next of kin; PHQ ¼ Patient Health Questionnaire; GAD ¼ General Anxiety Disorder; QODD ¼ Quality of Death and Dying; N/A ¼ not available. a Questions were only applicable to respondents who reported having two or more doctors involved in loved ones’ care. b P < 0.05.
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It is known that the dying process is associated with NOK depression or anxiety,18 and it is not unreasonable to think that this depression and anxiety may affect QODD scores. The relationship between the PHQ-8, GAD-7, and QODD was described using Spearman rank correlation coefficients. The PHQ-8 and GAD-7 surveys were strongly positively correlated (r ¼ 0.7581, P < 0.0001), whereas the QODD and PHQ-8 instruments were weakly negatively correlated (r ¼ 0.2258, P < 0.0001). This indicated a weak trend that PHQ-8 scores decreased as QODD scores increased. A similar correlation was shown for QODD and GAD-7 (r ¼ 0.2257, P < 0.0001).
Discussion We conducted a survey of the NOK of patients in an integrated health system in rural Pennsylvania who died between September 2011 and August 2012 in an attempt to assess the quality of the dying process, identify opportunities for improvement, and support strategies for targeting at-risk families and explore the relationships between the QODD, mental health questionnaires and questions regarding coordination of care. In this study, NOK generally reported high satisfaction with their care team and providers with the median score benchmarking at the high end of QODD scores reported by other institutions.19e21 Of note, factors associated with NOK reporting lower quality of the dying and death experience included: 1) the importance of the location of death (in-hospital associated with lower quality), 2) the length of time of poor health before death (the longer the illness, the lower the quality), 3) the number of physicians involved in care (the greater the number, the lower the quality), 4) and the quality of coordination between and among them (i.e., the receipt of confusing or conflicting information was associated with lower quality). There was neither association between time since death and QODD score nor did time since death impact QODD association with other factors, indicating that recall bias is not a concern for this particular survey. The quality of the dying process for NOK in this study who reported receiving conflicting information was 33% lower than the quality of the dying process for those who did not. Although this association is the finding of a single study in a single integrated and rurally based health system, we suggest that it deserves closer and broader scrutiny with the aim of encouraging efforts to improve clinician communication with the families of patients with advanced illness and at the end of life. Surveying and assessing the experiences of NOK who have recently lost loved ones is a challenge to organizations wishing to assess the quality of the dying
Vol. 50 No. 3 September 2015
process. The methodology needed to perform such assessments should be family centered and should be grounded in an acknowledgment of and respect for the grieving process and the psychological and emotional burdens that death often imposes on surviving caregivers. Although the risk of harm to the NOK of deceased patients should not be underestimated, we show here that it is possible to engage families in a process that may benefit other patients and loved ones within their community. This initiative was intended, in part, to supplement current national efforts to identify and reduce barriers to improved quality in end-of-life care. Important study limitations to be considered when interpreting our results include the following: 1) low response rate, 2) limited diversity of the NOK who participated in the survey (a predominantly white, rural, and older population), 3) use of mailed surveys several months after death contributing to potential recall bias, and 4) a survey population engaged primarily with a single health care institution for its health care. Additionally, the correlation between the receipt of confusing or conflicting information and the quality of the dying process is not necessarily causal. Despite these limitations, we suggest that the use of several instruments to clarify the interactions between mental health concerns, communication breakdowns, and perceptions of quality of care represents an important contribution to the measurement of quality in end-of-life care. Further investigation is warranted to more fully understand the complex interactions regarding families’ perceptions of communication breakdowns and quality of care to effectively design interventions to enhance communication between care teams and families at the end of life. In the current economic environment and in light of the demand to enhance the delivery of high value care, care for dying patients willdand shoulddcome under greater scrutiny as a potential opportunity to reduce costs and improve quality. Establishing measurements for the quality of the dying process and collecting data will be important to health care institutions seeking to enhance value of this complex and challenging aspect of health care.
Disclosures and Acknowledgments Support for this work was provided by internal funding through the GHS. No competing financial interests exist for any author of this article. The authors thank J. Randall Curtis, MD, MPH, Professor, Division of Pulmonary and Critical Care Medicine, who was a paid consultant with GHS and advised on survey instruments and analysis.
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Assessing the Quality of Death and Dying
References 1. Porter ME. What is value in health care? N Engl J Med 2010;363:2477e2481.
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11. Davison SN, Simpson C. Hope and advance care planning in patients with end stage renal disease: qualitative interview study. BMJ 2006;333:886e991.
2. Provonost P, Angus DC. Economics of end-of-life care in the intensive care unit. Crit Care Med 2001;29:N46eN51.
12. Dillman DA, Smyth JD, Christian LM. Internet, mail and mixed-mode surveys: The tailored design method, 3rd ed. New York: John Wiley & Sons, Inc., 2008:512.
3. Curits JR, Wenrich MD, Carline JD, et al. Understanding physicians’ skills at providing end-of-life care: perspective of patients, families and health care workers. J Gen Intern Med 2001;16:41e49.
13. Patrick DL, Engelberg RA, Curtis JR. Evaluating the quality of dying and death: initial validation using afterdeath interviews with family members. J Pain Symptom Manage 2002;24:17e31.
4. Osborn TR, Curtis JR, Nielsen EL, et al. Identifying elements of ICU care that families report as important but unsatisfactory: decision-making, control, and ICU atmosphere. Chest 2012;142:1185e1192. 5. Teno JM, Casey VA, Welch LC, Edgeman-Levitan S. Patient-focused family-centered end-of-life medical care: views of the guidelines and bereaved family members. J Pain Symptom Manage 2001;22:738e751. 6. Murray SA, Boyd K, Kendall M, et al. Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community. BMJ 2002;325: 929e934. 7. Selman L, Harding R, Beynon T, et al. Improving end-oflife care for patients with chronic heart failure: ‘‘Let’s hope it’ll get better, when I know in my heart of hearts it won’t’’. Heart 2007;93:963e967. 8. Rogers AE, Addington-Hall JM, Abery AJ, et al. Knowledge and communication difficulties for patients with chronic heart failure: qualitative study. BMJ 2000;321: 605e607. 9. Gore JM, Brophy CJ, Greenstone MA. How well do we care for patients with end stage chronic obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD and lung cancer. Thorax 2000;55: 1000e1006. 10. Curtis JR, Engelberg RA, Nielsen EL, Au DH, Patrick DL. Patient-physician communication about end of life care for patients with severe COPD. Eur Respir J 2004; 24:200e205.
14. Teno JM, Clarridge B, Casey V, Edgeman-Levitan S, Fowler J. Validation of Toolkit After-Death Bereaved Family Member Interview. J Pain Symptom Manage 2001;22: 752e758. 15. Curtis JR, Patrick DL, Engelberg RA, Norris K, Asp C. A measure of the quality of dying and death: initial validation using after-death interviews with family members. J Pain Symptom Manage 2002;24:17e31. 16. Kroenke K, Spitzer RL, Williams JBW. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med 2001;16:606e613. 17. Spitzer RL, Kroenkw K, Williams JB, Lowe B. A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med 2006;166:1092e1097. 18. Pochard F, Azoulay E, Chevret S, et al. Symptoms of anxiety and depression in family members of intensive care unit patients: ethical hypothesis regarding decision-making capacity. Crit Care Med 2001;29:1893e1897. 19. Mularski R, Curtis JR, Osborne M, Engelberg RA, Ganzini L. Agreement among family members in their assessment of the Quality of Dying and Death. J Pain Symptom Manage 2004;28:306e315. 20. Levy CR, Ely EW, Payne K, et al. Quality of dying and death in two medical ICUs: perceptions of family and clinicians. Chest 2005;127:1775e1783. 21. Mularski RA, Heine CE, Osborne ML, Ganzini L, Curtis JR. Quality of dying in the ICU: ratings by family members. Chest 2005;128:280e287.
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Supplementary Table 1 Measure Scores by Patient and NOK Characteristics PHQ Score (n ¼ 634)
QODD Score (n ¼ 657) Measures QODD score Patient age NOK age NOK sex NOK relationship NOK education level
Number of self-reported doctors PHQ-8
QODD score
73.6 69.5 73.5 75.0 71.8 75.0 73.8 73.7 73.7 73.1 75.3 69.3 79.3
(56.8, (52.9, (58.9, (56.8, (55.5, (57.6, (55.5, (58.1, (56.5, (54.3, (58.2, (56.3, (59.5,
86.2) 86.8) 85.8) 85.4) 84.5) 87.6) 84.4) 84.8) 86.7) 87.1) 85.8) 84.3) 91.9)
P-Value
0.5704 0.3765 0.4354 0.5102 0.4838
Median (IQR) 4 5 4 2 3 3 5 3 4 6 2 2 7
(1, (2, (1, (0, (1, (1, (2, (0, (1, (2, (0, (0, (1,
8) 8) 9) 7) 7) 7) 11) 7) 8) 10) 6) 6) 12)
P-Value
<0.0001b 0.0124b 0.0317b <0.0001b 0.0046b
Median (IQR) 2 3 3 1 3 1 3 1 3 3 2 1 4
(0, (0, (0, (0, (0, (0, (0, (0, (0, (0, (0, (0, (1,
6) 7) 7) 5) 6) 5) 8) 5) 6) 7) 6) 5) 8)
72.5 (56.5, 86.3)
4 (1, 8)
3 (0, 6)
73.5 (58.1, 85.0)
3 (0, 9)
2 (0, 7)
73.0 (53.3, 85.6)
3 (1, 6)
1 (0, 5)
73.2 (58.2, 85.2)
3 (0, 6)
1 (0, 5)
73.7 73.6 80.0 68.2 76.3 69.4
(55.5, (58.1, (61.4, (50.6, (59.5, (54.4,
87.1) 85.3) 89.0) 82.9) 87.7) 82.7)
78.8 76.5 73.7 76.0 69.8 73.7 55.0
(46.0, (59.7, (57.2, (61.1, (54.4, (53.4, (26.8,
88.8) 89.1) 86.1) 88.4) 85.3) 83.7) 78.6)
75.9 74.7 63.9 52.8
(59.5, (59.5, (47.5, (24.4, N/A N/A
88.2) 84.1) 75.8) 73.0)
0.9309 <0.0001b
0.1391 <0.0001b
<0.0001b
N/A
5 2 4 4 4 3
(2, (0, (1, (1, (1, (0,
10) 6) 7) 8) 9) 8)
5 (1, 8) 3 (0, 6) 4 (1, 8) N/A N/A N/A N/A 2 8 11 17 6 3
(0, 4) (5, 11) (8, 15) (11, 19) (2, 11) (1, 7)
<0.0001b 0.1505
0.0595 N/A
<0.0001b
<0.0001b
3 1 2 3 3 1 5 2 2 0 5 8 14
(0, (0, (0, (0, (0, (0,
7) 5) 6) 7) 7) 5)
(0, 9) (0, 6) (0, 6) (0, 2) (2, 7) (6, 10) (10, 17)
N/A N/A N/A N/A 4 (0, 9) 3 (0, 6)
N/A
3 (0, 8)
1 (0, 6)
N/A
2 (0, 6)
1 (0, 4)
P-Valuea 0.0094b 0.0259b 0.0145b 0.0055b 0.0735
0.0003b 0.2012
0.3429 <0.0001b
N/A
<0.0001b
(Continued)
Vol. 50 No. 3 September 2015
GAD-7
All respondents 65e74 (n ¼ 133) 75e84 (n ¼ 288) 85þ (n ¼ 251) 18e59 (n ¼ 234) 60e79 (n ¼ 336) 80e99 (n ¼ 88) Male (n ¼ 180) Female (n ¼ 482) Spouse/partner (n ¼ 237) Child (n ¼ 335) Other (n ¼ 88) Less than high school (n ¼ 37) High school diploma or GED (n ¼ 224) Some college or trade school (n ¼ 169) Four-year college degree (n ¼ 98) Graduate or professional school (n ¼ 131) Yes (n ¼ 313) No (n ¼ 347) At home (n ¼ 210) In a hospital (n ¼ 177) In hospice (n ¼ 71) In a nursing home or other long-term care/facility (n ¼ 182) Other (n ¼ 15) 0e1 (n ¼ 113) 2þ (n ¼ 511) None (0e4) n ¼ 351 Mild (5e9) n ¼ 166 Moderate (10e14) n ¼ 69 Moderately severe and severe (15þ) n ¼ 48 None (0e4) n ¼ 417 Mild (5e9) n ¼ 134 Moderate (10e14) n ¼ 47 Severe (15þ) n ¼ 34 Quartile 1 QODD # 57 (n ¼ 165) Quartile 2 57 < QODD $ 74 (n ¼ 170) Quartile 3 74 < QODD $ 86 (n ¼ 157) Quartile 4 QODD > 86 (n ¼ 165)
Median (IQR)
GAD Score (n ¼ 632) a
Darer et al.
Lived with patient vs. not Location of death
Category
a
QODD Score (n ¼ 657) Measures Question 53dcontradictory informationc Question 54dclear who in chargec Question 55dillness progressionc
Category
51.2 71.8 76.2 72.3 68.0 70.8
(34.0, 69.0) (55.5, 83.2) (61.4, 89.0) (59.4, 88.0) (51.4 79.5) (55.2, 81.8)
P-Value
<0.0001b 0.0004b 0.0079b
Median (IQR) 9 5 3 3 5 5
(2, (1, (0, (1, (2, (1,
16) 8) 6) 7) 10) 9)
GAD Score (n ¼ 632) a
P-Value
<0.0001b 0.0003b 0.2464
Median (IQR) 8 2 1 2 3 3
(1, (0, (0, (0, (0, (0,
12) 7) 5) 6) 9) 7)
76.1 (58.9, 86.7)
2 (1, 7)
2 (0, 5)
75.0 (57.9, 87.7)
3 (1, 7)
2 (0, 6)
81.7 (67.2 91.7)
3 (1, 8)
3 (0, 7)
P-Valuea <0.0001b 0.0050b 0.5477
NOK ¼ next of kin; QODD ¼ Quality of Death and Dying; PHQ ¼ Patient Health Questionnaire; GAD ¼ General Anxiety Disorder; IQR ¼ interquartile range; GED ¼ General Educational Development; N/A ¼ not available. a P-values for QODD, PHQ, and GAD score differences are from the Kruskal-Wallis test. b P < 0.05. c Only NOK who indicated more than one physician (n ¼ 511) were asked to answer Questions 53e55.
Assessing the Quality of Death and Dying
Always/usually (n ¼ 44) Sometimes (n ¼ 164) Never (n ¼ 291) Yes (n ¼ 335) No (n ¼ 153) Sick for most of the last six months (n ¼ 224) Healthy for part of the last six months and gradually declined (n ¼ 79) Healthy for most of the last six months and rapidly declined (n ¼ 142) Healthy and suddenly stricken shortly before death (n ¼ 59)
Median (IQR)
PHQ Score (n ¼ 634) a
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Supplementary Table 1 Continued
349.e2
349.e3
Supplementary Table 2 Individual Question Responses by Patient and NOK Characteristics Confusing or Contradictory Information (n ¼ 499)a Always/ Usually Measures Patient age NOK age NOK sex NOK relationship NOK education level
PHQ-8
GAD-7
Question 53d contradictory information
Yes
Category
N
%
N
%
N
%
All respondents 65e74 (n ¼ 103) 75e84 (n ¼ 223) 85þ (n ¼ 185) 18e59 (n ¼ 181) 60e79 (n ¼ 260) 80e99 (n ¼ 62) Male (n ¼ 140) Female (n ¼ 365) Spouse/partner (n ¼ 187) Child (n ¼ 256) Other (n ¼ 61) Less than high school (n ¼ 25) High school diploma or GED (n ¼ 154) Some college or trade school (n ¼ 132) Four-year college degree (n ¼ 85) Graduate or professional school (n ¼ 108) Yes (n ¼ 248) No (n ¼ 256) At home (n ¼ 169) In a hospital (n ¼ 132) In hospice (n ¼ 61) In a nursing home or other long-term care/facility (n ¼ 129) Other (n ¼ 11) None: 0e4 (n ¼ 269) Mild: 5e9 (n ¼ 127) Moderate: 10e14 (n ¼ 55) Moderately severe and severe: 15þ (n ¼ 42) None: 0e4 (n ¼ 319) Mild: 5e9 (n ¼ 105) Moderate: 10e14 (n ¼ 35) Severe: 15þ (n ¼ 29) Quartile 1: QODD # 57 (n ¼ 122) Quartile 2: 57 < QODD $ 74 (n ¼ 132) Quartile 3: 74 < QODD $ 86 (n ¼ 121) Quartile 4: QODD > 86 (n ¼ 125) Always/usually (n ¼ 44) Sometimes (n ¼ 164) Never (n ¼ 291)
44 9 21 14 23 18 3 12 32 12 30 2 3 13 10 9 9
8.8 8.9 9.6 7.8 12.8 7.1 5.1 8.7 9.0 6.6 12.0 3.3 12.5 8.7 7.6 10.8 8.6
164 29 74 61 59 80 21 49 112 64 78 19 3 47 40 34 37
32.9 28.7 33.9 33.9 32.8 31.7 35.6 35.5 31.5 35.4 31.1 31.7 12.5 31.5 30.5 41.0 35.2
291 63 123 105 98 154 35 77 211 105 143 39 18 89 81 40 59
58.3 62.4 56.4 58.3 54.4 61.1 59.3 55.8 59.4 58.0 57.0 65.0 75.0 59.7 61.8 48.2 56.2
22 22 10 17 9 8
9.2 8.7 6.1 13.0 15.0 6.3
78 83 53 45 13 44
32.5 32.9 32.5 34.4 21.7 34.9
140 147 100 69 38 74
58.3 58.3 61.3 52.7 63.3 58.7
0 16 6 7 14
0.0 6.1 4.8 13.0 35.0
3 74 53 17 13
30.0 28.0 42.4 31.5 32.5
7 174 66 30 13
70.0 65.9 52.8 55.6 32.5
15 8 12 7 23 13 3 3 N/A N/A N/A
4.8 7.7 34.3 25.9 19.8 9.8 2.5 2.5 N/A N/A N/A
97 34 16 8 42 47 41 29 N/A N/A N/A
31.1 32.7 45.7 29.6 36.2 35.6 34.7 23.8 N/A N/A N/A
200 62 7 12 51 72 74 90 N/A N/A N/A
64.1 59.6 20.0 44.4 44.0 54.5 62.7 73.8 N/A N/A N/A
P-Value 0.8319 0.2089 0.7000 0.1419 0.3303
0.9835 0.1471
<0.0001b
<0.0001b
<0.0001b
No
N
%
N
%
335 75 146 114 113 180 39 95 238 131 155 46 17 105 88 54 68
68.6 75.8 68.5 64.8 63.8 73.2 68.4 70.9 68.4 74.0 63.0 79.3 77.3 71.4 71.0 64.3 65.4
153 24 67 62 64 66 18 39 110 46 91 12 5 42 36 30 36
31.4 24.2 31.5 35.2 36.2 26.8 31.6 29.1 31.6 26.0 37.0 20.7 22.7 28.6 29.0 35.7 34.6
163 169 114 83 39 84
69.4 68.7 73.5 63.8 65.0 67.7
72 77 41 47 21 40
30.6 31.3 26.5 36.2 35.0 32.3
10 188 88 28 19
100.0 72.9 71.0 54.9 48.7
0 70 36 23 20
0.0 27.1 29.0 45.1 51.3
218 73 15 14 69 87 76 96 12 92 230
71.5 71.6 44.1 51.9 59.5 68.0 66.7 80.0 27.9 57.5 81.3
87 29 19 13 47 41 38 24 31 68 53
28.5 28.4 55.9 48.1 40.5 32.0 33.3 20.0s 72.1 42.5 18.7
P-Value 0.1691 0.1214 0.5940 0.0106b 0.5844
0.8752 0.0870
0.0028b
0.0023b
0.0076b
<0.0001b
(Continued)
Vol. 50 No. 3 September 2015
QODD score
Never
Darer et al.
Lived with patient vs. not Location of death
Sometimes
Clear Which Doctor in Charge of Loved One’s Care (n ¼ 488)a
Confusing or Contradictory Information (n ¼ 499)a Always/ Usually Measures Question 54dclear who in charge Question 55dillness progression
Category
%
N
%
Never N
Yes %
P-Value <0.0001
b
No
N
%
N
%
P-Value
N/A N/A 147
N/A N/A 67.7
N/A N/A 70
N/A N/A 32.3
0.7402
12 31 24
3.6 20.4 11.0
92 68 76
27.5 44.7 34.7
230 53 119
68.9 34.9 54.3
7
9.0
22
28.2
49
62.8
54
70.1
23
29.9
10
7.1
46
32.9
84
60.0
91
65.9
47
34.1
3
5.4
35
62.5
18
32.1
37
74.0
13
26.0
0.6544
NOK ¼ next of kin; GED ¼ General Educational Development; PHQ ¼ Patient Health Questionnaire; GAD ¼ General Anxiety Disorder; QODD ¼ Quality of Death and Dying; N/A ¼ not available. a Questions were only applicable to respondents who reported having two or more doctors involved in loved ones’ care. b P < 0.05.
Assessing the Quality of Death and Dying
Yes (n ¼ 335) No (n ¼ 153) Sick for most of the last six months (n ¼ 224) Healthy for part of the last six months and gradually declined (n ¼ 79) Healthy for most of the last six months and rapidly declined (n ¼ 142) Healthy and suddenly stricken shortly before death (n ¼ 59)
N
Sometimes
Clear Which Doctor in Charge of Loved One’s Care (n ¼ 488)a
Vol. 50 No. 3 September 2015
Supplementary Table 2 Continued
349.e4
349.e5
Supplementary Table 3 Multivariate Models for QODD, PHQ, and GAD Scores Outcome ¼ QODD Score Model Variables
95% CI
71.70 70.17 68.64
(68.34, 75.05) (67.16, 73.17) (65.50, 71.77)
71.79 70.59 68.18
(68.21, 75.37) (67.41, 73.77) (65.14, 71.23)
* * *
* * *
* * *
* * *
71.87 67.21
(67.75, 75.99) (63.88, 70.54)
* *
* *
* * *
Outcome ¼ GAD Score
Estimate
95% CI
P-Value
Estimate
95% CI
P-Value
* * *
* * *
* * *
* * *
* * *
* * *
* * *
* * *
* * *
* * *
5.78 5.50 5.27
(4.98, 6.58) (4.79, 6.21) (4.48, 6.07)
4.93 4.49 4.12
(4.17, 5.70) (3.80, 5.18) (3.35, 4.89)
5.59 5.52 5.44
(4.71, 6.47) (4.81, 6.24) (4.64, 6.24)
4.57 4.52 4.44
(3.78, 5.37) (3.82, 5.21) (3.64, 5.25)
4.38 6.66
(3.33, 5.44) (5.91, 7.40)
3.84 5.19
(2.84, 4.84) (4.47, 5.90)
* *
5.79 5.25
(5.06, 6.51) (4.30, 6.21)
4.83 4.20
(4.12, 5.54) (3.29, 5.11)
* * *
* * *
6.27 5.21 5.08
(4.99, 7.56) (4.29, 6.13) (3.82, 6.34)
4.34 4.71 4.49
(3.16, 5.52) (3.79, 5.62) (3.30, 5.68)
* * * * *
* * * * *
* * * * *
7.34 5.64 5.61 4.28 4.73
(5.37, (4.77, (4.67, (3.15, (3.66,
* * * * *
* * * * *
* *
* *
* * <0.0001
6.22 4.82
(5.25, 7.20) (3.93, 5.71)
4.84 4.19
(3.90, 5.78) (3.35, 5.03)
* * * * *
* * * * *
* * * * *
* * * * *
* * * * *
* * *
* * *
* * *
4.07 3.86 5.61
(3.39, 4.75) (3.07, 4.65) (4.18, 7.04)
P-Value 0.0148
0.0070
* * *
* * * 0.1700
0.7446 * * * 0.0415
* * * 0.0165
0.7504
0.0001
0.0114
0.2601
0.1546
0.4002
0.8699
Darer et al.
0.0348 9.31) 6.50) 6.55) 5.42) 5.80) 0.0227
75.24 67.14 73.96 66.78 64.58 * * *
(71.92, (63.80, (69.03, (63.52, (53.82, * * *
78.55) 70.47) 78.89) 70.05) 75.35) * * *
* * * * * 0.2515
* * * * * 0.0721
(Continued)
Vol. 50 No. 3 September 2015
PHQ-2 score PHQ-2 ¼ 0 (25th percentile) PHQ-2 ¼ 1 (median) PHQ-2 ¼ 2 (75th percentile) GAD score GAD ¼ 0 (25th percentile) GAD ¼ 2 (median) GAD ¼ 6 (75th percentile) Patient age Age ¼ 76 (25th percentile) Age ¼ 82 (median) Age ¼ 87 (75th percentile) NOK age Age ¼ 56 (25th percentile) Age ¼ 64 (median) Age ¼ 74 (75th percentile) Number of doctors (self-reported) 0e1 2þ NOK gender Female Male NOK relationship Spouse/partner Child Other NOK education level Less than high school High school diploma or GED Some college or trade school Four-year college degree Graduate or professional school Lived with Yes No Death location Home Hospital Hospice Nursing home Other Number of inpatient visits 0 1e2 3þ
Estimate
Outcome ¼ PHQ Score
Outcome ¼ QODD Score Model Variables
*
95% CI
P-Value
Estimate
95% CI
<0.0001 58.08 69.61 73.93
(51.59, 64.57) (65.69, 73.54) (70.55, 77.31)
67.71 66.70
(64.01, 71.42) (62.63, 70.77)
63.26
Outcome ¼ GAD Score P-Value
Estimate
95% CI
<0.0001 9.12 5.99 4.86
(7.55, 10.69) (5.07, 6.91) (4.04, 5.68)
5.88 7.43
(5.02, 6.75) (6.47, 8.39)
(59.70, 66.83)
*
*
67.65
(62.43, 72.86)
*
66.47
(62.26, 70.68)
71.45
(65.47, 77.43)
P-Value <0.0001
7.50 4.50 3.57
(6.02, 8.97) (3.64, 5.35) (2.77, 4.37)
4.79 5.59
(3.97, 5.61) (4.67, 6.50)
*
*
*
*
*
*
*
*
*
*
*
*
*
*
*
*
*
*
*
*
*
0.6223
0.0042
0.1137
0.0343
Variable wasn’t included in the model for that outcome. QODD ¼ Quality of Death and Dying; PHQ ¼ Patient Health Questionnaire; GAD ¼ General Anxiety Disorder; NOK ¼ next of kin; GED ¼ General Educational Development.
Assessing the Quality of Death and Dying
Confusing/contradictory information Always/usually Sometimes Never Clear which doctor was in charge Yes No Illness progression Sick for most of the last six months Healthy part of the last six months and then gradual decline Rapid decline one to two months before death Suddenly stricken
Estimate
Outcome ¼ PHQ Score
Vol. 50 No. 3 September 2015
Supplementary Table 3 Continued
349.e6