Abstract
Background
Research in the 1990s described serious symptoms at the end of life, and a 1997 Institute of Medicine report called for improvement. Hospice and palliative care have grown considerably since then.
Objective
To describe changes in pain intensity and symptom prevalence during the last year of life from 1998 to 2010.
Design
Observational study.
Setting
Health and Retirement Study (HRS), a nationally representative longitudinal survey of community-dwelling US residents aged 51 and older.
Participants
7,204 HRS participants who died while enrolled in the study, and their family respondents.
Measurements
Proxy-reported pain during the last year of life; depression, confusion, dyspnea, incontinence, fatigue, anorexia, and vomiting for a period of at least one month during the last year of life. Trends in pain intensity and symptom prevalence were analyzed among all decedents and those within cancer, congestive heart failure or chronic lung disease, frailty, and sudden death.
Results
Between 1998 and 2010, proxy reports of the prevalence of any pain (mild, moderate, or severe) increased for all decedents by 11.9% (95% CI: 3.1%, 21.4%). Reported prevalence of depression increased for all decedents by 26.6% (14.5%, 40.1%), for congestive heart failure or chronic lung disease by 27.0% (8.1%, 49.3%), and for frailty by 39.4% (9.9%, 79.8%). Reported prevalence of periodic confusion increased for all decedents by 31.3% (18.6%, 45.1%), for congestive heart failure or chronic lung disease by 24.9% (6.0%, 47.6%), for frailty by 20.3% (5.9%, 39.1%), and for sudden death by 45.7% (5.9%, 106.1%). Trends in the reported prevalence of most other symptoms in most groups of decedents were positive but not significant. Moderate or severe pain, severe fatigue, anorexia, and frequent vomiting did not show significant changes in any group of decedents. There were no significant changes for cancer.
Limitation
Proxy reports, mostly yes/no symptom questions.
Conclusion
Despite national efforts to improve end-of-life care, proxy reports of pain and other alarming symptoms in the last year of life increased from 1998 to 2010.
Primary Funding Source
National Institute of Nursing Research.
Introduction
In a seminal 1997 report on the state of end-of-life care, the Institute of Medicine (IOM) described extensive patient and family suffering and emphasized the need for better care at the end of life.1 Subsequent activity included the development of guidelines and quality measures and the growth of palliative medicine, including clinical training programs.2-5 Policy and practice emphasized better pain management.6 Hospice use doubled from 2000 to 2009, with 42% of Americans receiving hospice before death in 2009.7
Symptoms are among the most distressing aspects of the end-of-life experience for patients and families; interventions often promote comfort across a range of conditions and symptoms.2,8-11 Although we have lacked definitive population-based data, systematic reviews show the high prevalence of many symptoms, including pain, dyspnea, and depression, across multiple advanced diseases.12 Pain is among the most prevalent and troubling of symptoms, and patients and families fear and wish to avoid it near the end of life.13,14
It is not known whether national efforts to improve end-of-life care since the IOM report have led to changes in the prevalence of commonly occurring end-of-life symptoms. We therefore examined nationally representative trends in end-of-life symptom prevalence from 1998 to 2010 for the population as a whole and for different groups of decedents. Given the strength of practice evidence and policy attention to both cancer and pain,6,15 we expected that overall trends would be better for patients with cancer than with other conditions, and that trends in the prevalence and severity of pain would be better than for other symptoms.
Methods
Setting and Study Participants
We used data from the Health and Retirement Study (HRS), a nationally representative longitudinal survey of community-dwelling adults aged 51 or older in the contiguous United States.16,17 The mortality rate of the HRS population is comparable to that of the overall United States population of adults aged 51 and older. HRS participants are interviewed every two years until their deaths. After each participant's death, HRS interviews a proxy informant, typically a family member, who was most familiar with the health, family, and financial situation of the participant. We included participants who died while enrolled in HRS and whose proxy informant provided a postmortem interview within two years of death.
Symptom Outcomes
We evaluated symptom prevalence using eight yes/no questions that asked about the presence of pain, depression, periodic confusion, dyspnea, severe fatigue, incontinence, anorexia, and frequent vomiting. All symptom questions excluding pain asked if the decedent experienced the symptom for a period of at least one month during the last year of life; for pain only, the question asked if the decedent were often troubled with pain in the last year of life. In addition, a follow-up question asked about the degree of pain (mild, moderate, or severe) if pain were present. We analyzed any pain and moderate or severe pain separately. Appendix Table 1 provides the exact wording for all symptom questions.
Symptom Covariates
We employed a model of whole person distress, which included demographics as well as clinical, psychological, and social domains, and which we modified to include proxy factors. Demographics included age at death, gender, and race/ethnicity. Clinical covariates included number of nights spent in a hospital in the last two years of life, nursing home residency at the time of death and length of nursing home residency prior to death (regardless of site of death), number of ADL dependencies (0-6 scale comprised of help with dressing, walking, bathing, eating, transferring, and toileting), and diagnosis of arthritis (included in models for pain only). The psychological covariate was depression reported in the interview wave prior to death, as indicated by a score of four or more on an eight-item subset of the 20-item Center for Epidemiologic Studies Depression Scale.18,19 The social covariates included highest level of education, household wealth, and household income. Proxy covariates included relationship of proxy to decedent (spouse, son or daughter, or other); time elapsed between decedent's death and proxy's interview; average hours per week of care given to decedent from all informal carers, including care given by proxy; highest level of education (only available if proxy was spouse [approximately 33% of proxies]); and English/Spanish preference for interview. In addition, we also included the year that the decedent entered the HRS sample.
Decedent Categories
We employed a sequential categorization scheme based on prior work to resolve decedents into four mutually exclusive categories: sudden death, cancer, congestive heart failure (CHF) or chronic lung disease, and frailty.20-23 Decedents were categorized as (1) sudden death, if they died within one day of receiving their terminal diagnosis; (2) cancer, if their proxy reported cancer as their cause of death; (3) CHF or chronic lung disease, if they or their proxy reported a diagnosis of either or both of these conditions; or (4) frailty, if they died in a nursing home, they or their proxy reported physician-diagnosed memory impairment, or their proxy reported hip fracture in the last two years of life.
Questions that asked about diagnoses of CHF, chronic lung disease, and physician-diagnosed memory impairment were asked both of proxies in postmortem interviews and of decedents themselves in each survey wave while they were alive. We considered each of these conditions to be present if either the decedent or the proxy reported its presence.
Statistical Analysis
All analyses accounted for complex survey design using sampling weights, providing estimates representative of the entire US population. We used multivariable logistic regression models to investigate the association between each symptom outcome and time of death. We employed two sets of models for each outcome: a fully adjusted model that included all symptom covariates described above, and a minimally adjusted model that included only demographics and time elapsed between decedent's death and proxy's interview. We conducted all analyses for the cohort as a whole and in each of the four mutually exclusive decedent categories. All decedents were included in the entire population analysis, and decedents who qualified for membership in one of the four categories were also analyzed separately in that category.
We report adjusted prevalence of each symptom by year of death from both fully and minimally adjusted models. We estimated the percent change in the adjusted prevalence of each symptom using first and last death dates from all regressions, and used bootstrapping with bias correction to estimate confidence intervals.24 We report adjusted percent change in the prevalence of each symptom from both fully and minimally adjusted models.
We imputed missing values using multiple imputation by chained equations with 15 imputed datasets using Stata's “ice” command;25 analyses in imputed data were carried out with “mi estimate” commands or manually using Rubin's rules.26 We constructed a multiple imputation model that included time of death, decedent categories, all symptom outcome variables, and all symptom covariates described above except for the year that the decedent entered the HRS sample. Two sets of variables were imputed using forms different from those included in regression analyses: (1) pain was captured with one categorical variable that recorded no pain or mild, moderate, or severe pain, and the outcomes of any pain and moderate or severe pain were created from this categorical variable after imputation; (2) the six ADL questions were included separately in the imputation model and combined into a scale after imputation.
Of the 31 total variables in the imputation model, 12 had no missing values and were not themselves imputed. The remaining 19 variables were imputed (numbers of missing values are presented here): pain categorical variable (241), depression (225), periodic confusion (53), dyspnea (54), incontinence (128), severe fatigue (123), anorexia (212), frequent vomiting (99), race/ethnicity (7), number of nights spent in a hospital in the last two years of life (582), help with dressing (31), help with walking (26), help with bathing (31), help with eating (33), help with transferring (43), help with toileting (44), diagnosis of arthritis (4), depression in interview wave prior to death (485), and household wealth (75).
In the 2002 survey wave only, approximately 41% of proxies were erroneously not asked non-pain symptom questions due to faulty survey logic. Upon discovering the issue, HRS corrected the survey logic but did not go back and collect the missing data. As a result, those responses were permanently lost. In our main analyses, we excluded those 41% of proxies in the 2002 survey wave only. As a sensitivity analysis, we also replicated these analyses excluding the entire 2002 survey wave to investigate the effect of potentially non-random missing data due to faulty survey logic.
We also performed an additional sensitivity analysis to evaluate whether there was substantial year-to-year variation in our outcomes. We replicated each minimally adjusted multivariable logistic regression using a continuous variable that captured each survey year rather than a variable that captured time of death. We report average yearly percent change and confidence intervals.
We conducted analyses with Stata 12.1 IC (StataCorp, College Station, Texas). The RAND IRB approved the study.
Role of the Funding Source
The National Institute of Nursing Research supported this research and had no role in the design, conduct, or analysis of this study or in the decision to submit the manuscript for publication.
Results
8,641 HRS participants died between 1998 and 2010, for which 8,089 proxy interviews were completed. Of those, 7,204 proxy interviews were completed within two years of the decedent's death. The latter comprised our study cohort. The response rates for the six survey waves from 2000 to 2010 were 86%, 85%, 91%, 88%, 92%, and 85%, respectively. Table 1 presents the weighted characteristics of the cohort as a whole and by timing of death. Their mean age at death was 79.1 years. Fifty-four percent were women; 17% were nonwhite. Twenty-two percent were reported to have had cancer; 33%, CHF or chronic lung disease; 16%, frailty; and 16%, sudden death. Fourteen percent reported none of these categories. Approximately 50% of decedents were reported to have had moderate or severe pain, depression, periodic confusion, dyspnea, or incontinence; approximately 60% were reported to have had any pain, severe fatigue, or anorexia; and approximately 12% were reported to have had frequent vomiting.
Table 1. Characteristics of Study Populationa.
| % of Decedentsb | |||||||
|---|---|---|---|---|---|---|---|
| Interval of Death | |||||||
| Characteristic | All (n = 7,204) |
1998-2000 (n = 1,243) |
2000-2002 (n = 1,226) |
2002-2004 (n = 1,144) |
2004-2006 (n = 1,186) |
2006-2008 (n = 1,212) |
2008-2010 (n = 1,193) |
| Age at death | |||||||
| < 65 | 12.3 | 13.7 | 10.4 | 7.8 | 14.6 | 14.6 | 12.0 |
| 65-74 | 19.6 | 20.4 | 21.2 | 18.1 | 18.3 | 18.5 | 21.3 |
| 75-84 | 32.6 | 33.0 | 33.2 | 39.1 | 31.5 | 30.4 | 29.2 |
| > 84 | 35.5 | 32.9 | 35.2 | 35.0 | 35.6 | 36.5 | 37.5 |
| Women | 53.6 | 51.3 | 53.0 | 54.4 | 51.4 | 55.9 | 55.4 |
| Ethnicity | |||||||
| Non-Hispanic White | 83.2 | 84.4 | 82.3 | 83.7 | 81.9 | 83.1 | 83.8 |
| Non-Hispanic Black | 10.3 | 10.3 | 10.7 | 9.9 | 10.6 | 10.6 | 9.9 |
| Hispanic | 4.6 | 3.7 | 4.9 | 4.4 | 4.9 | 4.7 | 4.9 |
| Other | 1.9 | 1.6 | 2.1 | 2.0 | 2.7 | 1.6 | 1.4 |
| Decedent categories | |||||||
| Cancer | 22.2 | 23.8 | 21.8 | 21.2 | 20.9 | 22.5 | 22.9 |
| CHF or chronic lung disease | 32.5 | 27.7 | 30.9 | 32.9 | 34.8 | 33.5 | 34.6 |
| Frailty | 15.5 | 14.5 | 15.0 | 15.4 | 16.1 | 16.9 | 14.8 |
| Sudden death | 15.7 | 18.7 | 14.9 | 15.7 | 13.4 | 16.1 | 15.7 |
| Symptoms | |||||||
| Moderate or severe pain | 50.6 | 46.7 | 47.7 | 49.9 | 51.9 | 51.5 | 54.8 |
| Any pain | 57.5 | 53.1 | 53.9 | 56.8 | 58.7 | 57.9 | 63.6 |
| Depression | 51.4 | 44.6 | 49.5 | 51.8 | 52.0 | 53.2 | 55.5 |
| Periodic confusion | 47.9 | 41.7 | 42.8 | 46.1 | 49.6 | 54.1 | 49.1 |
| Dyspnea | 52.6 | 49.8 | 51.9 | 52.4 | 50.9 | 53.5 | 56.2 |
| Incontinence | 45.8 | 41.9 | 43.2 | 47.6 | 47.1 | 46.3 | 46.8 |
| Severe fatigue | 62.4 | 59.2 | 57.9 | 63.0 | 66.6 | 62.7 | 62.6 |
| Anorexia | 64.0 | 62.1 | 61.1 | 62.1 | 65.0 | 67.6 | 64.1 |
| Frequent vomiting | 11.8 | 11.4 | 11.4 | 11.5 | 11.4 | 13.5 | 11.1 |
| Comorbid conditions | |||||||
| Depression | 26.4 | 25.9 | 27.8 | 27.1 | 25.7 | 26.1 | 26.0 |
| Arthritis | 67.6 | 57.8 | 65.3 | 70.5 | 69.0 | 70.4 | 71.2 |
| 2+ ADLs (0-6 scale) | 70.6 | 66.8 | 67.8 | 70.5 | 73.6 | 71.2 | 72.7 |
| Health care utilization | |||||||
| Median hospital nights in last two years of life (IQR) | 7 (0-20) |
5 (0-19) |
7 (0-21) |
6 (0-20) |
7 (0-21) |
7 (0-20) |
7 (0-20) |
| Nursing home residency at time of death | 28.0 | 28.8 | 29.9 | 29.2 | 26.9 | 29.2 | 24.2 |
| Median hours of informal care received per week in last two years of life (IQR) | 15 (0-93) |
13 (0-75) |
16 (0-90) |
14 (0-88) |
18 (0-106) |
14 (0-111) |
21 (1-103) |
| Highest level of education | |||||||
| Some high school or less | 55.4 | 60.2 | 60.3 | 54.1 | 54.2 | 52.3 | 52.5 |
| High school graduate | 29.4 | 27.8 | 26.2 | 30.2 | 30.3 | 30.4 | 30.8 |
| Some college or more | 15.2 | 12.1 | 13.5 | 15.8 | 15.5 | 17.2 | 16.7 |
| Median household wealth (IQR), $ | 83,000 (8,000-273,000) |
72,000 (7,000-209,000) |
81,000 (8,000-220,000) |
94,000 (8,000-259,000) |
89,000 (3,000-265,000) |
83,000 (6,000-330,000) |
102,000 (8,000-336,000) |
| Median income (IQR), $ | 20,000 (11,000-36,000) |
17,000 (10,000-32,000) |
18,000 (10,000-34,000) |
18,000 (11,000-32,000) |
21,000 (12,000-39,000) |
21,000 (12,000-38,000) |
24,000 (13,000-45,000) |
| Relationship of proxy to decedent | |||||||
| Spouse | 32.9 | 34.0 | 33.7 | 30.3 | 36.2 | 31.8 | 31.3 |
| Son or daughter | 44.8 | 42.9 | 41.9 | 44.0 | 43.7 | 46.5 | 49.0 |
| Other | 22.3 | 23.1 | 24.4 | 25.8 | 20.1 | 21.7 | 19.6 |
| Mean months between decedent's death and proxy's interview (95% CI) | 11.3 (11.1-11.5) |
11.5 (11.1-11.9) |
12.6 (12.1-13.0) |
11.0 (10.5-11.5) |
10.9 (10.4-11.3) |
10.7 (10.2-11.1) |
11.5 (11.1-11.9) |
| Highest spouse level of education (if spouse was proxy) | |||||||
| Some high school or less | 43.4 | 42.4 | 45.4 | 44.5 | 42.2 | 45.3 | 41.0 |
| High school graduate | 37.1 | 41.0 | 36.7 | 39.7 | 38.7 | 33.3 | 33.5 |
| Some college or more | 19.5 | 16.6 | 17.9 | 15.8 | 19.1 | 21.4 | 25.4 |
| Interview conducted in English | 98.3 | 98.4 | 98.2 | 98.4 | 98.2 | 98.3 | 98.1 |
Reported values account for complex survey design
Percentages are rounded and may not sum to 100%
Table 2 presents the adjusted prevalence of symptoms from both fully and minimally adjusted models for all decedents between 1998 and 2010; Appendix Tables 2 and 3 present this information for cancer, CHF or chronic lung disease, frailty, and sudden death. These estimates are largely similar between the two sets of models and show the high prevalence of most symptoms in the entire population and in all decedent categories. Most estimates also suggest positive trends in prevalence over time.
Table 2. Adjusted Estimated Prevalence of Symptoms between 1998 and 2010 in the Entire Populationa.
| % of Decedents (95% CIs) | |||||||
|---|---|---|---|---|---|---|---|
| Year of Death | |||||||
| Models adjusted for demographics and clinical, psychological, social, and proxy characteristicsb | |||||||
| Outcome | 1998 | 2000 | 2002 | 2004 | 2006 | 2008 | 2010 |
| Moderate or severe pain | 48.7 (45.8, 51.6) |
49.3 (47.0, 51.5) |
49.9 (48.2, 51.6) |
50.5 (49.0, 52.0) |
51.1 (49.5, 52.7) |
51.7 (49.6, 53.8) |
52.4 (49.6, 55.2) |
| Any pain | 54.3 (51.6, 57.1) |
55.4 (53.3, 57.5) |
56.5 (54.9, 58.1) |
57.5 (56.2, 58.9) |
58.6 (57.1, 60.1) |
59.7 (57.7, 61.6) |
60.8 (58.2, 63.4) |
| Depression | 45.0 (42.3, 47.7) |
47.0 (44.9, 49.1) |
49.0 (47.3, 50.6) |
50.9 (49.4, 52.4) |
52.9 (51.1, 54.7) |
54.9 (52.5, 57.2) |
57.0 (53.9, 60.0) |
| Periodic confusion | 41.1 (38.5, 43.6) |
43.2 (41.2, 45.2) |
45.3 (43.8, 46.8) |
47.4 (46.3, 48.5) |
49.5 (48.4, 50.7) |
51.7 (50.2, 53.1) |
53.9 (51.9, 56.0) |
| Dyspnea | 50.2 (48.1, 52.2) |
50.9 (49.4, 52.5) |
51.7 (50.5, 52.9) |
52.4 (51.3, 53.6) |
53.2 (51.8, 54.6) |
54.0 (52.1, 55.8) |
54.8 (52.3, 57.2) |
| Incontinence | 43.0 (40.0, 46.0) |
43.8 (41.6, 46.1) |
44.7 (43.1, 46.2) |
45.5 (44.4, 46.7) |
46.4 (45.0, 47.7) |
47.2 (45.2, 49.2) |
48.1 (45.3, 51.0) |
| Severe fatigue | 60.7 (58.0, 63.4) |
61.2 (59.2, 63.2) |
61.7 (60.3, 63.1) |
62.2 (61.0, 63.4) |
62.7 (61.3, 64.1) |
63.2 (61.2, 65.1) |
63.7 (61.0, 66.4) |
| Anorexia | 62.2 (59.5, 64.9) |
62.7 (60.7, 64.7) |
63.2 (61.8, 64.6) |
63.8 (62.5, 65.0) |
64.3 (62.7, 65.9) |
64.8 (62.5, 67.1) |
65.4 (62.3, 68.4) |
| Frequent vomiting | 12.3 (10.4, 14.2) |
12.1 (10.7, 13.5) |
11.9 (10.9, 12.9) |
11.7 (11.0, 12.5) |
11.6 (10.8, 12.4) |
11.4 (10.3, 12.5) |
11.2 (9.7, 12.7) |
| Minimally adjusted modelsc | |||||||
| Outcome | 1998 | 2000 | 2002 | 2004 | 2006 | 2008 | 2010 |
| Moderate or severe pain | 45.7 (42.9, 48.5) |
47.3 (45.1, 49.4) |
48.8 (47.1, 50.6) |
50.4 (48.8, 52.0) |
52.0 (50.2, 53.8) |
53.6 (51.2, 55.9) |
55.3 (52.3, 58.3) |
| Any pain | 51.5 (48.8, 54.1) |
53.5 (51.4, 55.5) |
55.5 (53.9, 57.1) |
57.5 (56.0, 59.0) |
59.5 (57.7, 61.2) |
61.4 (59.1, 63.7) |
63.4 (60.6, 66.3) |
| Depression | 44.7 (42.2, 47.2) |
46.8 (44.9, 48.7) |
48.8 (47.3, 50.4) |
50.9 (49.4, 52.5) |
53.0 (51.1, 54.9) |
55.0 (52.6, 57.5) |
57.2 (54.1, 60.4) |
| Periodic confusion | 41.6 (38.9, 44.3) |
43.5 (41.4, 45.6) |
45.5 (43.9, 47.1) |
47.5 (46.2, 48.7) |
49.5 (48.1, 50.8) |
51.4 (49.6, 53.3) |
53.6 (51.1, 56.1) |
| Dyspnea | 49.2 (47.1, 51.3) |
50.3 (48.7, 51.8) |
51.3 (50.1, 52.6) |
52.4 (51.2, 53.6) |
53.4 (51.9, 55.0) |
54.5 (52.5, 56.5) |
55.6 (53.0, 58.3) |
| Incontinence | 43.3 (40.4, 46.2) |
44.1 (42.0, 46.2) |
44.8 (43.4, 46.3) |
45.6 (44.4, 46.7) |
46.3 (44.8, 47.8) |
47.0 (44.8, 49.3) |
47.8 (44.8, 50.9) |
| Severe fatigue | 59.5 (56.7, 62.4) |
60.4 (58.4, 62.5) |
61.3 (59.8, 62.7) |
62.1 (60.9, 63.4) |
63.0 (61.4, 64.6) |
63.8 (61.6, 66.1) |
64.7 (61.7, 67.7) |
| Anorexia | 61.0 (58.4, 63.7) |
61.9 (60.0, 63.9) |
62.8 (61.4, 64.3) |
63.7 (62.3, 65.1) |
64.6 (62.8, 66.3) |
65.4 (63.1, 67.7) |
66.3 (63.3, 69.4) |
| Frequent vomiting | 11.4 (9.6, 13.2) |
11.5 (10.1, 12.8) |
11.6 (10.6, 12.6) |
11.7 (10.9, 12.4) |
11.8 (11.0, 12.6) |
11.9 (10.8, 13.0) |
12.0 (10.4, 13.5) |
Analysis accounts for complex survey design
Adjusted prevalence is predicted from regression models of each symptom on time of death, controlling for age at death, gender, race/ethnicity, number of nights spent in a hospital in the last two years of life, nursing home residency at the time of death and length of nursing home residency prior to death (regardless of site of death), number of ADL dependencies (0-6 scale), diagnosis of arthritis (pain models only), depression reported in interview wave prior to death, highest level of education, household wealth, household income, proxy relationship to decedent, time elapsed between decedent's death and proxy's interview, average hours per week of care given to decedent from all informal carers, highest level of education if proxy was spouse, English/Spanish preference for interview, and year that the decedent entered the HRS sample
Adjusted prevalence is predicted from regression models of each symptom on time of death, controlling for age at death, gender, race/ethnicity, and time elapsed between decedent's death and proxy's interview
Table 3 presents the adjusted percent change in prevalence of symptoms from both fully and minimally adjusted models among all decedents and for cancer, CHF or chronic lung disease, frailty, and sudden death. In fully adjusted models, proxy reports of the prevalence of any pain (mild, moderate, or severe) increased for all decedents by 11.9% (95% CI: 3.1%, 21.4%) between 1998 and 2010. Reported prevalences of depression and periodic confusion each increased for all decedents and in multiple decedent categories by large percentages (between 20.3% and 45.7%). Incontinence also increased for all decedents, and dyspnea increased for sudden death. Trends in the reported prevalence of most other symptoms in most groups of decedents were positive but not significant. Moderate or severe pain, severe fatigue, anorexia, and frequent vomiting did not show significant changes in any group of decedents. There were no significant changes for cancer.
Table 3. Adjusted Total Percent Change in Prevalence of Symptoms between 1998 and 2010a.
| Adjusted % Change (95% CIs) | |||||
|---|---|---|---|---|---|
| Models adjusted for demographics and clinical, psychological, social, and proxy characteristicsb | |||||
| Outcome | Entire Population (n = 7,204) |
Cancer (n = 1,546) |
CHF or Chronic Lung Disease (n = 2,293) |
Frailty (n = 1,175) |
Sudden Death (n = 1,161) |
| Moderate or severe pain | 7.6 (-1.9, 18.4) |
4.8 (-10.9, 24.0) |
4.2 (-10.6, 23.3) |
6.8 (-21.8, 43.9) |
-3.0 (-26.2, 28.5) |
| Any pain | 11.9 (3.1, 21.4) |
7.9 (-6.7, 25.5) |
12.0 (-2.0, 29.0) |
12.4 (-13.3, 45.5) |
8.0 (-13.9, 35.7) |
| Depression | 26.6 (14.5, 40.1) |
8.8 (-11.6, 33.4) |
27.0 (8.1, 49.3) |
39.4 (9.9, 79.8) |
17.0 (-10.4, 53.0) |
| Periodic confusion | 31.3 (18.6, 45.1) |
26.3 (-1.6, 61.1) |
24.9 (6.0, 47.6) |
20.3 (5.9, 39.1) |
45.7 (5.9, 106.1) |
| Dyspnea | 9.2 (-1.0, 19.9) |
4.4 (-15.8, 27.0) |
0.5 (-8.7, 11.8) |
8.9 (-28.1, 56.2) |
36.7 (2.3, 85.9) |
| Incontinence | 11.9 (1.0, 23.6) |
-4.4 (-26.1, 21.7) |
10.0 (-7.2, 30.5) |
2.8 (-14.1, 21.7) |
29.3 (-5.1, 82.4) |
| Severe fatigue | 4.9 (-2.9, 13.7) |
7.0 (-5.5, 21.4) |
-2.3 (-13.2, 10.6) |
-1.8 (-22.1, 25.4) |
16.4 (-10.5, 51.7) |
| Anorexia | 5.1 (-2.4, 13.2) |
7.4 (-3.7, 18.8) |
0.8 (-10.6, 13.7) |
-7.5 (-23.2, 10.4) |
13.9 (-16.4, 50.3) |
| Frequent vomiting | -8.8 (-31.2, 21.5) |
11.4 (-26.0, 72.8) |
-30.5 (-60.2, 26.8) |
-26.4 (-66.0, 69.4) |
72.5 (-30.4, 305.7) |
| Minimally adjusted modelsc | |||||
| Outcome |
Entire Population (n = 7,204) |
Cancer (n = 1,546) |
CHF or Chronic Lung Disease (n = 2,293) |
Frailty (n = 1,175) |
Sudden Death (n = 1,161) |
| Moderate or severe pain | 20.9 (9.7, 32.9) |
11.2 (-5.8, 31.2) |
15.9 (-1.3, 37.0) |
13.3 (-16.6, 53.9) |
24.3 (-6.6, 66.4) |
| Any pain | 23.3 (13.4, 33.9) |
13.0 (-2.6, 31.3) |
22.5 (7.0, 41.7) |
18.4 (-8.5, 55.2) |
32.8 (5.3, 68.9) |
| Depression | 28.0 (15.7, 42.0) |
11.5 (-9.8, 36.7) |
25.0 (6.4, 46.7) |
37.6 (8.2, 78.0) |
23.1 (-7.8, 64.6) |
| Periodic confusion | 28.8 (15.6, 43.6) |
26.7 (-2.4, 61.5) |
16.5 (-2.4, 39.0) |
20.1 (5.0, 39.0) |
49.4 (3.4, 114.8) |
| Dyspnea | 13.1 (2.5, 24.5) |
5.0 (-15.4, 27.9) |
2.5 (-7.0, 13.1) |
9.1 (-26.2, 56.1) |
42.4 (6.6, 92.6) |
| Incontinence | 10.4 (-0.6, 23.3) |
-9.9 (-29.6, 16.6) |
3.0 (-14.4, 23.4) |
-1.9 (-18.7, 16.8) |
48.2 (4.9, 113.5) |
| Severe fatigue | 8.7 (0.3, 17.6) |
3.4 (-8.8, 17.7) |
0.7 (-10.8, 14.1) |
-2.2 (-23.1, 24.3) |
21.3 (-6.6, 59.3) |
| Anorexia | 8.7 (0.5, 17.5) |
8.1 (-3.3, 20.4) |
1.2 (-10.5, 14.3) |
-6.0 (-21.9, 12.0) |
21.2 (-11.6, 63.9) |
| Frequent vomiting | 5.1 (-20.8, 40.3) |
25.7 (-16.9, 91.4) |
-29.4 (-60.9, 27.2) |
-16.3 (-63.2, 93.6) |
105.5 (-13.9, 457.9) |
Analysis accounts for complex survey design
Adjusted percent change is predicted from regression models of each symptom on time of death, controlling for age at death, gender, race/ethnicity, number of nights spent in a hospital in the last two years of life, nursing home residency at the time of death and length of nursing home residency prior to death (regardless of site of death), number of ADL dependencies (0-6 scale), diagnosis of arthritis (pain models only), depression reported in interview wave prior to death, highest level of education, household wealth, household income, proxy relationship to decedent, time elapsed between decedent's death and proxy's interview, average hours per week of care given to decedent from all informal carers, highest level of education if proxy was spouse, English/Spanish preference for interview, and year that the decedent entered the HRS sample. Confidence intervals are bootstrapped.
Adjusted percent change is predicted from regression models of each symptom on time of death, controlling for age at death, gender, race/ethnicity, and time elapsed between decedent's death and proxy's interview. Confidence intervals are bootstrapped.
As compared with fully adjusted models, minimally adjusted models generally showed larger trends, and more trends were significant. Proxy reports of moderate or severe pain increased for all decedents by 20.9% (95% CI: 9.7%, 32.9%), and reports of any pain increased for all decedents by 23.3% (13.4%, 33.9%), for CHF or chronic lung disease by 22.5% (7.0%, 41.7%), and for sudden death by 32.8% (5.3%, 68.9%). Increases in the reported prevalences of depression and periodic confusion for all decedents and in multiple decedent categories were similar to those in fully adjusted models. Dyspnea, severe fatigue, and anorexia also increased for all decedents, and dyspnea and incontinence increased for sudden death. As with fully adjusted models, there were no significant changes for cancer.
We performed two sensitivity analyses for fully adjusted models: estimating symptom prevalence and percent change excluding the 2002 survey wave (Appendix Tables 4 and 5), and investigating yearly changes rather than 12-year changes (Appendix Table 6). Overall results do not differ appreciably between analyses with and without the 2002 survey wave, and the magnitude and significance of yearly changes generally comport with those of 12-year changes.
Discussion
We analyzed bereaved family interviews conducted on behalf of decedents in a large, nationally representative survey in order to evaluate changes in end-of-life symptom burden in the United States between 1998 and 2010. Over the time-frame of our study, proxy reports of many symptoms increased in prevalence, including pain, depression, and periodic confusion. Consistent with our hypothesis, we found no significant trends in any symptom in cancer.
Proxy reports of worsening symptom prevalence raise concerns about shortcomings in end-of-life care despite increasing national attention and resources devoted to it. Indeed, recent studies of health care performance suggest that there remain persistent gaps in addressing symptoms near the end of life.27-29 It is particularly concerning that proxy reports of pain have increased, as pain is among the most visible and well-studied aspect of the end-of-life experience, has received policy attention, and significantly impacts health-related quality of life (HRQOL).6 Moderate and severe pain, for example, has an HRQOL impact more pronounced than many health and sociodemographic factors.30,31 It is encouraging, however, that trends in cancer pain prevalence and severity may have stabilized. This should be monitored in the face of growing public concern about prescription opioid abuse, which may create resistance to using opioids from both clinicians and patients in otherwise appropriate scenarios.32
Our results indicate that symptom burden is high near the end of life, and our findings are generally concordant with population-level studies available from other countries. Cancer outpatients in Canada assessed between diagnosis and death reported the prevalence of pain, dyspnea, depression, and anorexia between 45% and 60%, and fatigue at 75%.33 Dyspnea prevalence among hospice patients in Australia at three months prior to death was 50% overall, 65% for heart failure, and 88% for end-stage pulmonary disease.34
There are many factors that could contribute to the persistence and potential increase in prevalence of these troubling end-of-life symptoms. Recent reports demonstrate that the intensity of treatment and the rate of adverse transitions have been increasing near the end of life.7 Hospice is often “tacked on” to this more intense late life care: even though hospice use doubled from 2000 to 2009, the median stay is less than three weeks.7,35 Some patients who have short stays may not realize the full benefits of hospice for symptomatic relief. Palliative care services remain more common in hospitals, and patients may not have consistent access to palliative services in outpatient, home, and long-term facility settings, where most of the course of a terminal illness takes place. Effective interventions can sometimes mitigate the symptoms we have highlighted (e.g., opioid regimens for pain and dyspnea),36 but there remain significant gaps in their delivery near the end of life.37,38 This suggests that interventions may not be reaching the right patients in the right ways.
In addition, increased attention to end-of-life care generally and symptoms specifically may have increased proxy reporting of symptoms over the time frame of our study. For example, if clinicians became more likely to ask about symptoms, proxies may have become more aware of them and thus more likely to report them.
Proxy reports inevitably reflect both the patient's and proxy's experiences. They can provide invaluable information, but further research is needed to improve their validity, particularly with regard to the reporting of subjective symptoms, which proxies tend to overestimate.39 The evidence base is inconsistent with respect to the impact of a variety of factors on the validity of proxy reports, including the contributions of caregiver distress and the proxy's relationship to the decedent.39 Improved understanding of proxy reports is especially important now that they are being used in hospice and other settings for quality assessment and improvement.40
We faced several limitations. First, we used proxy reports of outcomes, which could affect the validity of subjective symptoms,39 but is unlikely to explain symptom trends, since proxies were used in all survey waves. Second, we used mostly yes/no questions, which might have masked variation in symptom intensity. Although we could not assess changes in the severity of non-pain outcomes, the increase in their prevalence raises concerns. Third, due to limitations in the survey itself, we could not capture all constructs relevant to evaluating symptom trends in end-of-life patients, particularly hospice enrollment and site of death. The attenuation of many of our results in fully adjusted models as compared with minimally adjusted models suggests that changes in many of the proxy and decedent characteristics were partially responsible for the changes in reported symptoms we observed. It is therefore important to recognize that residual confounding may remain due to other factors we could not account for in our models.
In summary, between 1998 and 2010, proxy reports of serious pain and many other distressing symptoms became more common near the end of life. Given our knowledge of best practices and continued gaps in applying them, there is an urgent need simply to benchmark current practice against current knowledge. Future research should evaluate settings that provide better and worse end-of-life symptom management in order to offer insight into promoting best practices. Improving care at the end of life will necessitate further investment to understand the trends we identified, and steps will be required to reverse them.
Acknowledgments
Grant Support: This work was supported by grant R01 NR013372 from the National Institute of Nursing Research. Mr. Singer received support from grant T32 GM008042 as a member of the Medical Scientist Training Program at the University of California, Los Angeles.
Appendix
Appendix Table 1. HRS Survey Questions Used to Construct Symptom Outcomes.
| Outcome | HRS Variable | Question to Proxy |
|---|---|---|
| Presence of pain | C104 | Was [he/she] often troubled with pain? We want a general idea of [his/her] pain level during the last year or so of life. |
| Degree of pain | C105 | How bad was the pain most of the time: mild, moderate or severe? |
| Dyspnea | C198 | Was there a period of at least one month during the last year of [his/her] life when [he/she] had the following problems: difficulty breathing? |
| Anorexia | C199 | Was there a period of at least one month during the last year of [his/her] life when [he/she] had very little appetite or desire for food? |
| Frequent vomiting | C200 | Was there a period of at least one month during the last year of [his/her] life when [he/she] had frequent vomiting? |
| Depression | C202 | Was there a period of at least one month during the last year of [his/her] life when [he/she] had depression? |
| Periodic confusion | C203 | Was there a period of at least one month during the last year of [his/her] life when [he/she] had periodic confusion? |
| Severe fatigue | C204 | Was there a period of at least one month during the last year of [his/her] life when [he/she] had severe fatigue or exhaustion? |
| Incontinence | C208 | Was there a period of at least one month during the last year of [his/her] life when [he/she] had loss of control of bowel or bladder? |
Appendix Table 2. Adjusted Estimated Prevalence of Symptoms between 1998 and 2010 among Decedent Categories (Fully Adjusted Models)a.
| % of Decedents (95% CIs)b | ||||||||
|---|---|---|---|---|---|---|---|---|
| Year of Death | ||||||||
| Category | Outcome | 1998 | 2000 | 2002 | 2004 | 2006 | 2008 | 2010 |
| Cancer | Moderate or severe pain | 60.3 (54.4, 66.2) |
60.8 (56.5, 65.1) |
61.3 (58.1, 64.5) |
61.8 (58.8, 64.7) |
62.2 (58.5, 66.0) |
62.7 (57.5, 67.9) |
63.2 (56.3, 70.1) |
| Any pain | 63.7 (57.8, 69.6) |
64.6 (60.3, 68.9) |
65.4 (62.4, 68.4) |
66.2 (63.7, 68.8) |
67.1 (64.0, 70.2) |
67.9 (63.6, 72.2) |
68.7 (62.9, 74.6) |
|
| Depression | 51.1 (46.3, 56.0) |
51.9 (48.3, 55.5) |
52.6 (49.8, 55.4) |
53.3 (50.4, 56.3) |
54.1 (50.3, 57.9) |
54.8 (49.7, 59.9) |
55.6 (48.9, 62.3) |
|
| Periodic confusion | 38.1 (33.0, 43.2) |
39.7 (35.9, 43.6) |
41.4 (38.5, 44.3) |
43.0 (40.3, 45.7) |
44.7 (41.3, 48.0) |
46.3 (41.7, 50.9) |
48.1 (42.0, 54.3) |
|
| Dyspnea | 52.8 (48.0, 57.5) |
53.2 (49.5, 56.8) |
53.5 (50.6, 56.5) |
53.9 (51.0, 56.8) |
54.3 (50.7, 57.9) |
54.7 (50.0, 59.3) |
55.1 (49.1, 61.1) |
|
| Incontinence | 43.0 (38.1, 47.9) |
42.7 (38.8, 46.6) |
42.4 (39.3, 45.5) |
42.1 (39.1, 45.0) |
41.8 (38.4, 45.1) |
41.5 (37.2, 45.7) |
41.1 (35.7, 46.6) |
|
| Severe fatigue | 75.5 (69.7, 81.2) |
76.4 (72.3, 80.5) |
77.3 (74.7, 80.0) |
78.2 (76.2, 80.2) |
79.1 (76.6, 81.6) |
79.9 (76.3, 83.5) |
80.8 (75.8, 85.7) |
|
| Anorexia | 77.3 (72.9, 81.7) |
78.4 (75.1, 81.6) |
79.4 (76.9, 81.8) |
80.3 (78.0, 82.6) |
81.2 (78.5, 84.0) |
82.1 (78.6, 85.7) |
83.1 (78.6, 87.5) |
|
| Frequent vomiting | 20.7 (15.3, 26.0) |
21.0 (16.9, 25.2) |
21.4 (18.3, 24.6) |
21.8 (19.3, 24.3) |
22.2 (19.6, 24.8) |
22.6 (19.1, 26.1) |
23.0 (18.2, 27.8) |
|
| CHF or chronic lung disease | Moderate or severe pain | 52.4 (47.7, 57.1) |
52.8 (49.2, 56.3) |
53.1 (50.5, 55.7) |
53.5 (51.3, 55.6) |
53.8 (51.4, 56.3) |
54.2 (50.9, 57.6) |
54.6 (50.0, 59.1) |
| Any pain | 57.3 (53.4, 61.2) |
58.5 (55.5, 61.5) |
59.6 (57.3, 61.9) |
60.8 (58.7, 62.8) |
61.9 (59.4, 64.3) |
63.0 (59.9, 66.1) |
64.2 (60.1, 68.2) |
|
| Depression | 50.0 (45.2, 54.9) |
52.3 (48.5, 56.1) |
54.6 (51.7, 57.5) |
56.8 (54.4, 59.3) |
59.0 (56.4, 61.7) |
61.2 (57.9, 64.5) |
63.5 (59.3, 67.8) |
|
| Periodic confusion | 45.0 (40.5, 49.5) |
46.8 (43.4, 50.3) |
48.7 (46.1, 51.3) |
50.6 (48.4, 52.7) |
52.4 (50.1, 54.7) |
54.2 (51.2, 57.3) |
56.2 (52.1, 60.3) |
|
| Dyspnea | 75.1 (70.8, 79.4) |
75.1 (71.9, 78.4) |
75.2 (72.8, 77.6) |
75.3 (73.4, 77.2) |
75.3 (73.2, 77.4) |
75.4 (72.6, 78.2) |
75.5 (71.6, 79.3) |
|
| Incontinence | 46.6 (41.9, 51.3) |
47.4 (43.9, 50.9) |
48.2 (45.6, 50.7) |
48.9 (47.0, 50.9) |
49.7 (47.6, 51.8) |
50.5 (47.5, 53.4) |
51.3 (47.2, 55.4) |
|
| Severe fatigue | 69.3 (65.1, 73.6) |
69.1 (65.8, 72.3) |
68.8 (66.4, 71.2) |
68.5 (66.5, 70.6) |
68.3 (65.9, 70.6) |
68.0 (64.8, 71.2) |
67.7 (63.4, 72.0) |
|
| Anorexia | 68.7 (63.8, 73.5) |
68.8 (65.0, 72.5) |
68.9 (66.0, 71.7) |
68.9 (66.6, 71.3) |
69.0 (66.5, 71.6) |
69.1 (65.8, 72.4) |
69.2 (64.8, 73.6) |
|
| Frequent vomiting | 12.1 (8.5, 15.6) |
11.4 (8.9, 13.9) |
10.7 (9.0, 12.4) |
10.1 (8.8, 11.4) |
9.5 (8.1, 11.0) |
9.0 (7.0, 10.9) |
8.4 (5.8, 11.0) |
|
| Frailty | Moderate or severe pain | 37.7 (30.3, 45.0) |
38.1 (32.6, 43.6) |
38.5 (34.7, 42.4) |
38.9 (36.1, 41.8) |
39.4 (36.1, 42.6) |
39.8 (35.1, 44.5) |
40.2 (33.6, 46.9) |
| Any pain | 43.9 (37.2, 50.6) |
44.8 (39.5, 50.0) |
45.7 (41.6, 49.7) |
46.6 (43.3, 49.9) |
47.5 (44.1, 50.8) |
48.4 (44.2, 52.6) |
49.3 (43.8, 54.9) |
|
| Depression | 42.3 (35.8, 48.8) |
45.0 (39.9, 50.1) |
47.8 (43.9, 51.6) |
50.6 (47.5, 53.6) |
53.3 (50.2, 56.4) |
56.1 (52.1, 60.0) |
59.0 (53.6, 64.3) |
|
| Periodic confusion | 69.3 (62.0, 76.5) |
71.9 (66.6, 77.3) |
74.5 (70.6, 78.4) |
76.9 (73.9, 79.9) |
79.1 (76.3, 82.0) |
81.2 (77.9, 84.6) |
83.3 (79.3, 87.4) |
|
| Dyspnea | 28.8 (22.6, 35.1) |
29.2 (24.5, 34.0) |
29.7 (26.3, 33.0) |
30.1 (27.7, 32.5) |
30.5 (28.0, 33.0) |
30.9 (27.4, 34.5) |
31.4 (26.2, 36.6) |
|
| Incontinence | 65.3 (59.2, 71.4) |
65.6 (60.8, 70.4) |
65.9 (62.1, 69.7) |
66.2 (63.0, 69.4) |
66.5 (63.2, 69.9) |
66.8 (62.7, 71.0) |
67.2 (61.8, 72.5) |
|
| Severe fatigue | 52.9 (46.5, 59.4) |
52.8 (48.0, 57.5) |
52.6 (49.2, 56.1) |
52.5 (49.4, 55.5) |
52.3 (48.4, 56.2) |
52.1 (46.7, 57.6) |
52.0 (44.6, 59.3) |
|
| Anorexia | 68.6 (60.0, 77.1) |
67.7 (61.3, 74.2) |
66.9 (62.3, 71.5) |
66.1 (62.7, 69.4) |
65.2 (61.5, 68.9) |
64.3 (58.9, 69.7) |
63.4 (55.5, 71.2) |
|
| Frequent vomiting | 7.5 (4.0, 11.0) |
7.1 (4.7, 9.6) |
6.8 (5.1, 8.5) |
6.5 (5.0, 7.9) |
6.1 (4.3, 8.0) |
5.8 (3.4, 8.3) |
5.5 (2.4, 8.7) |
|
| Sudden death | Moderate or severe pain | 42.0 (35.1, 48.8) |
41.8 (36.6, 46.9) |
41.6 (37.9, 45.2) |
41.4 (38.6, 44.1) |
41.2 (38.2, 44.1) |
40.9 (36.8, 45.1) |
40.7 (34.9, 46.6) |
| Any pain | 49.0 (42.6, 55.4) |
49.6 (44.9, 54.3) |
50.3 (47.0, 53.6) |
50.9 (48.2, 53.6) |
51.6 (48.1, 55.0) |
52.2 (47.3, 57.1) |
52.9 (46.1, 59.7) |
|
| Depression | 39.5 (33.8, 45.1) |
40.5 (36.2, 44.9) |
41.6 (38.4, 44.9) |
42.7 (39.8, 45.6) |
43.8 (40.4, 47.3) |
45.0 (40.3, 49.6) |
46.2 (39.9, 52.5) |
|
| Periodic confusion | 26.0 (20.1, 31.9) |
27.8 (23.1, 32.6) |
29.7 (26.1, 33.3) |
31.7 (29.0, 34.3) |
33.6 (31.2, 36.1) |
35.7 (32.4, 38.9) |
37.9 (33.2, 42.7) |
|
| Dyspnea | 34.7 (29.6, 39.7) |
36.7 (32.6, 40.7) |
38.7 (35.4, 42.0) |
40.8 (37.7, 43.8) |
42.9 (39.4, 46.4) |
45.1 (40.6, 49.5) |
47.4 (41.6, 53.2) |
|
| Incontinence | 28.6 (21.8, 35.4) |
29.9 (24.7, 35.1) |
31.2 (27.5, 35.0) |
32.6 (29.9, 35.4) |
34.0 (31.0, 37.0) |
35.4 (31.1, 39.7) |
37.0 (30.7, 43.2) |
|
| Severe fatigue | 43.4 (37.3, 49.6) |
44.6 (40.2, 49.0) |
45.8 (42.8, 48.7) |
46.9 (44.7, 49.2) |
48.1 (45.1, 51.1) |
49.3 (44.7, 53.8) |
50.5 (44.0, 57.0) |
|
| Anorexia | 37.8 (32.3, 43.4) |
38.7 (34.6, 42.8) |
39.5 (36.4, 42.7) |
40.4 (37.2, 43.6) |
41.3 (37.0, 45.5) |
42.1 (36.3, 47.9) |
43.1 (35.4, 50.8) |
|
| Frequent vomiting | 5.3 (2.6, 8.1) |
5.9 (3.6, 8.1) |
6.4 (4.8, 8.1) |
7.0 (5.8, 8.3) |
7.7 (6.3, 9.1) |
8.4 (6.1, 10.7) |
9.2 (5.6, 12.8) |
|
Analysis accounts for complex survey design
Adjusted prevalence is predicted from regression models of each symptom on time of death, controlling for age at death, gender, race/ethnicity, number of nights spent in a hospital in the last two years of life, nursing home residency at the time of death and length of nursing home residency prior to death (regardless of site of death), number of ADL dependencies (0-6 scale), diagnosis of arthritis (pain models only), depression reported in interview wave prior to death, highest level of education, household wealth, household income, proxy relationship to decedent, time elapsed between decedent's death and proxy's interview, average hours per week of care given to decedent from all informal carers, highest level of education if proxy was spouse, English/Spanish preference for interview, and year that the decedent entered the HRS sample
Appendix Table 3. Adjusted Estimated Prevalence of Symptoms between 1998 and 2010 among Decedent Categories (Minimally Adjusted Models)a.
| % of Decedents (95% CIs)b | ||||||||
|---|---|---|---|---|---|---|---|---|
| Year of Death | ||||||||
| Category | Outcome | 1998 | 2000 | 2002 | 2004 | 2006 | 2008 | 2010 |
| Cancer | Moderate or severe pain | 58.4 (52.5, 64.4) |
59.5 (55.2, 63.8) |
60.6 (57.5, 63.8) |
61.7 (58.7, 64.8) |
62.8 (58.8, 66.8) |
63.9 (58.5, 69.2) |
65.0 (57.9, 72.1) |
| Any pain | 62.1 (56.3, 67.9) |
63.5 (59.3, 67.7) |
64.9 (61.9, 67.9) |
66.2 (63.6, 68.8) |
67.5 (64.3, 70.8) |
68.8 (64.4, 73.3) |
70.2 (64.3, 76.1) |
|
| Depression | 50.4 (45.7, 55.1) |
51.4 (47.8, 54.9) |
52.3 (49.5, 55.2) |
53.3 (50.4, 56.2) |
54.3 (50.6, 57.9) |
55.2 (50.3, 60.1) |
56.2 (49.9, 62.5) |
|
| Periodic confusion | 38.0 (33.3, 42.8) |
39.7 (36.1, 43.2) |
41.3 (38.6, 44.0) |
43.0 (40.4, 45.6) |
44.7 (41.3, 48.0) |
46.4 (41.8, 51.0) |
48.2 (42.1, 54.4) |
|
| Dyspnea | 52.6 (47.8, 57.5) |
53.0 (49.3, 56.8) |
53.5 (50.5, 56.5) |
53.9 (50.9, 56.9) |
54.3 (50.7, 58.0) |
54.8 (50.0, 59.5) |
55.2 (49.1, 61.4) |
|
| Incontinence | 44.3 (39.3, 49.4) |
43.6 (39.6, 47.5) |
42.9 (39.7, 46.1) |
42.1 (39.1, 45.2) |
41.4 (37.9, 44.9) |
40.7 (36.3, 45.1) |
39.9 (34.4, 45.5) |
|
| Severe fatigue | 77.0 (71.4, 82.5) |
77.4 (73.5, 81.3) |
77.8 (75.2, 80.4) |
78.3 (76.1, 80.4) |
78.7 (75.8, 81.6) |
79.1 (74.9, 83.3) |
79.6 (73.8, 85.3) |
|
| Anorexia | 77.0 (72.6, 81.5) |
78.2 (75.0, 81.4) |
79.3 (76.9, 81.7) |
80.3 (77.9, 82.7) |
81.3 (78.4, 84.3) |
82.3 (78.5, 86.1) |
83.3 (78.5, 88.1) |
|
| Frequent vomiting | 19.3 (14.4, 24.3) |
20.1 (16.2, 24.0) |
20.9 (17.9, 23.9) |
21.7 (19.2, 24.3) |
22.5 (19.8, 25.3) |
23.4 (19.7, 27.0) |
24.3 (19.3, 29.4) |
|
| CHF or chronic lung disease | Moderate or severe pain | 49.4 (45.0, 53.8) |
50.7 (47.5, 54.0) |
52.0 (49.6, 54.4) |
53.3 (51.0, 55.6) |
54.6 (51.5, 57.7) |
55.9 (51.7, 60.1) |
57.3 (51.7, 62.9) |
| Any pain | 54.4 (50.5, 58.4) |
56.5 (53.5, 59.5) |
58.6 (56.2, 60.9) |
60.6 (58.2, 63.0) |
62.6 (59.6, 65.6) |
64.6 (60.7, 68.4) |
66.6 (61.8, 71.5) |
|
| Depression | 50.5 (45.4, 55.6) |
52.6 (48.7, 56.6) |
54.8 (51.7, 57.8) |
56.9 (54.3, 59.4) |
58.9 (56.2, 61.7) |
61.0 (57.6, 64.4) |
63.1 (58.7, 67.6) |
|
| Periodic confusion | 46.9 (41.7, 52.1) |
48.2 (44.3, 52.1) |
49.5 (46.6, 52.4) |
50.7 (48.4, 53.1) |
52.0 (49.4, 54.6) |
53.3 (49.8, 56.8) |
54.7 (49.9, 59.4) |
|
| Dyspnea | 74.3 (69.8, 78.8) |
74.6 (71.2, 78.0) |
74.9 (72.4, 77.5) |
75.2 (73.2, 77.2) |
75.5 (73.3, 77.7) |
75.8 (73.0, 78.6) |
76.1 (72.3, 79.9) |
|
| Incontinence | 48.4 (43.1, 53.6) |
48.6 (44.7, 52.6) |
48.9 (46.0, 51.7) |
49.1 (46.9, 51.3) |
49.3 (46.9, 51.8) |
49.6 (46.1, 53.1) |
49.8 (45.0, 54.7) |
|
| Severe fatigue | 68.2 (64.0, 72.4) |
68.3 (65.1, 71.5) |
68.4 (66.0, 70.7) |
68.4 (66.5, 70.4) |
68.5 (66.2, 70.8) |
68.6 (65.5, 71.7) |
68.7 (64.4, 73.0) |
|
| Anorexia | 68.5 (63.6, 73.4) |
68.7 (64.9, 72.4) |
68.8 (65.9, 71.6) |
68.9 (66.6, 71.3) |
69.1 (66.6, 71.6) |
69.2 (65.9, 72.5) |
69.3 (65.0, 73.7) |
|
| Frequent vomiting | 12.0 (8.2, 15.7) |
11.3 (8.7, 14.0) |
10.7 (8.9, 12.5) |
10.1 (8.8, 11.4) |
9.5 (8.0, 11.1) |
9.0 (7.0, 11.1) |
8.5 (5.8, 11.2) |
|
| Frailty | Moderate or severe pain | 36.5 (29.9, 43.1) |
37.3 (32.3, 42.3) |
38.1 (34.4, 41.8) |
38.9 (35.7, 42.0) |
39.7 (35.9, 43.5) |
40.5 (35.3, 45.7) |
41.4 (34.3, 48.5) |
| Any pain | 42.7 (36.7, 48.6) |
43.9 (39.2, 48.7) |
45.2 (41.4, 49.0) |
46.5 (43.0, 50.0) |
47.8 (43.9, 51.7) |
49.1 (44.2, 54.0) |
50.5 (44.2, 56.8) |
|
| Depression | 42.6 (36.7, 48.6) |
45.3 (40.7, 49.9) |
47.9 (44.4, 51.4) |
50.6 (47.7, 53.5) |
53.2 (50.1, 56.4) |
55.9 (51.8, 60.0) |
58.7 (53.2, 64.2) |
|
| Periodic confusion | 69.3 (62.3, 76.3) |
72.0 (67.0, 77.0) |
74.5 (71.0, 78.1) |
76.9 (74.1, 79.8) |
79.2 (76.0, 82.3) |
81.2 (77.3, 85.1) |
83.3 (78.5, 88.1) |
|
| Dyspnea | 28.8 (22.4, 35.2) |
29.2 (24.3, 34.1) |
29.6 (26.1, 33.2) |
30.1 (27.4, 32.8) |
30.5 (27.6, 33.4) |
30.9 (27.0, 34.9) |
31.4 (25.8, 37.1) |
|
| Incontinence | 67.0 (59.9, 74.0) |
66.7 (61.1, 72.4) |
66.5 (62.0, 71.0) |
66.3 (62.5, 70.2) |
66.1 (62.1, 70.1) |
65.9 (61.0, 70.8) |
65.7 (59.4, 72.0) |
|
| Severe fatigue | 53.0 (46.4, 59.7) |
52.9 (48.1, 57.6) |
52.7 49.4, 56.0) |
52.5 (49.4, 55.5) |
52.3 (48.1, 56.4) |
52.1 (46.1, 58.0) |
51.9 (43.8, 60.0) |
|
| Anorexia | 68.0 (59.9, 76.1) |
67.3 (61.2, 73.5) |
66.7 (62.2, 71.1) |
66.0 (62.5, 69.5) |
65.3 (61.5, 69.2) |
64.7 (59.2, 70.1) |
63.9 (56.3, 71.6) |
|
| Frequent vomiting | 6.7 (3.6, 9.9) |
6.5 (4.2, 8.9) |
6.4 (4.6, 8.1) |
6.2 (4.5, 7.8) |
6.0 (4.1, 7.9) |
5.8 (3.3, 8.3) |
5.6 (2.5, 8.8) |
|
| Sudden death | Moderate or severe pain | 37.0 (29.6, 44.3) |
38.4 (32.9, 43.9) |
39.9 (36.0, 43.7) |
41.3 (38.4, 44.3) |
42.8 (39.3, 46.3) |
44.3 (39.2, 49.4) |
45.9 (38.7, 53.2) |
| Any pain | 43.8 (37.2, 50.5) |
46.2 (41.3, 51.0) |
48.5 (45.2, 51.9) |
50.9 (47.9, 53.9) |
53.3 (49.3, 57.3) |
55.6 (49.9, 61.4) |
58.2 (50.4, 65.9) |
|
| Depression | 38.3 (32.6, 44.0) |
39.8 (35.4, 44.1) |
41.2 (37.7, 44.7) |
42.7 (39.2, 46.1) |
44.1 (39.9, 48.4) |
45.6 (39.9, 51.3) |
47.2 (39.8, 54.6) |
|
| Periodic confusion | 25.7 (20.2, 31.2) |
27.6 (23.2, 32.1) |
29.6 (26.2, 33.0) |
31.7 (28.8, 34.5) |
33.8 (30.7, 36.8) |
36.0 (31.8, 40.1) |
38.4 (32.6, 44.2) |
|
| Dyspnea | 33.8 (28.6, 39.1) |
36.1 (31.8, 40.4) |
38.4 (34.8, 42.0) |
40.7 (37.4, 44.1) |
43.1 (39.4, 46.9) |
45.6 (40.9, 50.2) |
48.2 (42.2, 54.2) |
|
| Incontinence | 26.5 (19.7, 33.3) |
28.4 (23.0, 33.8) |
30.4 (26.4, 34.5) |
32.5 (29.4, 35.6) |
34.6 (31.4, 37.8) |
36.8 (32.4, 41.3) |
39.3 (32.9, 45.6) |
|
| Severe fatigue | 42.4 (36.5, 48.3) |
43.9 (39.6, 48.2) |
45.4 (42.3, 48.4) |
46.9 (44.1, 49.6) |
48.4 (44.6, 52.1) |
49.9 (44.5, 55.2) |
51.5 (44.2, 58.7) |
|
| Anorexia | 36.6 (31.3, 41.9) |
37.8 (33.8, 41.8) |
39.1 (35.8, 42.3) |
40.3 (36.8, 43.9) |
41.6 (36.9, 46.3) |
42.9 (36.6, 49.2) |
44.3 (36.1, 52.6) |
|
| Frequent vomiting | 4.9 (2.4, 7.3) |
5.5 (3.4, 7.6) |
6.2 (4.6, 7.8) |
7.0 (5.7, 8.3) |
7.8 (6.3, 9.4) |
8.8 (6.4, 11.3) |
10.0 (6.1, 13.9) |
|
Analysis accounts for complex survey design
Adjusted prevalence is predicted from regression models of each symptom on time of death, controlling for age at death, gender, race/ethnicity, and time elapsed between decedent's death and proxy's interview
Appendix Table 4. Adjusted Estimated Prevalence of Symptoms between 1998 and 2010 among Decedent Categories (Fully Adjusted Models Excluding 2002 Survey Wave)a.
| % of Decedents (95% CIs)b | ||||||||
|---|---|---|---|---|---|---|---|---|
| Year of Death | ||||||||
| Category | Outcome | 1998 | 2000 | 2002 | 2004 | 2006 | 2008 | 2010 |
| Entire population | Moderate or severe pain | 49.5 (46.1, 52.9) |
50.0 (47.4, 52.6) |
50.5 (48.5, 52.5) |
51.0 (49.3, 52.6) |
51.4 (49.8, 53.1) |
51.9 (49.8, 54.1) |
52.4 (49.6, 55.3) |
| Any pain | 55.3 (51.9, 58.6) |
56.2 (53.6, 58.7) |
57.1 (55.2, 59.0) |
58.0 (56.5, 59.5) |
58.9 (57.4, 60.4) |
59.8 (57.8, 61.8) |
60.8 (58.1, 63.5) |
|
| Depression | 45.5 (42.6, 48.4) |
47.3 (45.1, 49.5) |
49.1 (47.4, 50.8) |
50.9 (49.4, 52.4) |
52.7 (51.0, 54.4) |
54.5 (52.2, 56.8) |
56.4 (53.3, 59.5) |
|
| Periodic confusion | 42.0 (38.9, 45.1) |
43.9 (41.5, 46.3) |
45.8 (44.0, 47.5) |
47.7 (46.4, 48.9) |
49.6 (48.5, 50.7) |
51.5 (50.0, 53.0) |
53.5 (51.4, 55.7) |
|
| Dyspnea | 50.4 (47.9, 52.8) |
51.1 (49.2, 52.9) |
51.7 (50.3, 53.2) |
52.4 (51.2, 53.6) |
53.1 (51.7, 54.5) |
53.7 (51.9, 55.6) |
54.5 (52.0, 56.9) |
|
| Incontinence | 43.9 (40.5, 47.4) |
44.5 (41.9, 47.1) |
45.1 (43.2, 47.0) |
45.7 (44.3, 47.1) |
46.3 (44.9, 47.7) |
46.9 (45.0, 48.9) |
47.6 (44.8, 50.4) |
|
| Severe fatigue | 61.9 (59.2, 64.7) |
62.2 (60.1, 64.2) |
62.4 (61.0, 63.9) |
62.7 (61.5, 63.9) |
62.9 (61.5, 64.4) |
63.2 (61.2, 65.2) |
63.5 (60.7, 66.2) |
|
| Anorexia | 62.6 (59.5, 65.7) |
63.1 (60.8, 65.4) |
63.5 (61.9, 65.2) |
64.0 (62.6, 65.4) |
64.5 (62.8, 66.1) |
64.9 (62.7, 67.1) |
65.4 (62.3, 68.4) |
|
| Frequent vomiting | 12.6 (10.3, 15.0) |
12.4 (10.6, 14.1) |
12.1 (10.9, 13.4) |
11.9 (11.0, 12.7) |
11.6 (10.8, 12.4) |
11.4 (10.3, 12.4) |
11.1 (9.5, 12.6) |
|
| Cancer | Moderate or severe pain | 59.8 (52.3, 67.4) |
60.5 (54.9, 66.0) |
61.1 (57.1, 65.1) |
61.7 (58.6, 64.9) |
62.4 (58.7, 66.1) |
63.0 (57.8, 68.2) |
63.7 (56.6, 70.8) |
| Any pain | 62.1 (54.9, 69.3) |
63.3 (58.0, 68.6) |
64.6 (60.9, 68.2) |
65.8 (63.0, 68.5) |
66.9 (63.8, 70.0) |
68.1 (63.8, 72.4) |
69.3 (63.3, 75.3) |
|
| Depression | 51.6 (46.1, 57.0) |
52.1 (48.0, 56.2) |
52.7 (49.5, 55.8) |
53.2 (50.2, 56.2) |
53.8 (50.0, 57.6) |
54.3 (49.3, 59.4) |
54.9 (48.3, 61.6) |
|
| Periodic confusion | 39.3 (33.9, 44.6) |
40.6 (36.5, 44.6) |
41.9 (38.8, 44.9) |
43.2 (40.5, 45.9) |
44.5 (41.2, 47.8) |
45.8 (41.3, 50.3) |
47.2 (41.1, 53.3) |
|
| Dyspnea | 50.5 (45.1, 55.9) |
51.3 (47.1, 55.5) |
52.0 (48.7, 55.3) |
52.7 (49.6, 55.8) |
53.5 (49.9, 57.1) |
54.2 (49.6, 58.8) |
55.0 (49.0, 61.0) |
|
| Incontinence | 42.2 (36.6, 47.9) |
42.0 (37.5, 46.5) |
41.8 (38.2, 45.3) |
41.5 (38.4, 44.7) |
41.3 (37.9, 44.7) |
41.1 (36.8, 45.3) |
40.8 (35.4, 46.3) |
|
| Severe fatigue | 75.3 (69.1, 81.6) |
76.3 (71.8, 80.9) |
77.3 (74.2, 80.4) |
78.2 (75.9, 80.5) |
79.1 (76.6, 81.7) |
80.0 (76.5, 83.5) |
80.9 (76.1, 85.7) |
|
| Anorexia | 77.1 (72.3, 82.0) |
78.2 (74.6, 81.9) |
79.3 (76.5, 82.1) |
80.3 (77.8, 82.8) |
81.3 (78.5, 84.1) |
82.3 (78.7, 85.8) |
83.2 (78.8, 87.6) |
|
| Frequent vomiting | 19.9 (13.5, 26.2) |
20.4 (15.3, 25.5) |
21.0 (17.1, 24.9) |
21.6 (18.6, 24.6) |
22.2 (19.3, 25.0) |
22.8 (19.2, 26.3) |
23.4 (18.5, 28.4) |
|
| CHF or chronic lung disease | Moderate or severe pain | 53.1 (47.7, 58.5) |
53.3 (49.1, 57.6) |
53.5 (50.3, 56.8) |
53.8 (51.1, 56.4) |
54.0 (51.3, 56.7) |
54.2 (50.9, 57.6) |
54.5 (50.0, 58.9) |
| Any pain | 58.1 (53.1, 63.0) |
59.1 (55.2, 62.9) |
60.1 (57.1, 63.0) |
61.1 (58.6, 63.5) |
62.1 (59.5, 64.6) |
63.0 (59.9, 66.1) |
64.1 (60.0, 68.1) |
|
| Depression | 49.7 (44.2, 55.3) |
52.0 (47.7, 56.3) |
54.3 (51.0, 57.5) |
56.5 (54.0, 59.1) |
58.8 (56.1, 61.4) |
60.9 (57.7, 64.2) |
63.3 (58.9, 67.6) |
|
| Periodic confusion | 46.2 (40.1, 52.3) |
47.8 (43.2, 52.5) |
49.4 (46.1, 52.8) |
51.0 (48.7, 53.4) |
52.7 (50.4, 54.9) |
54.3 (51.2, 57.3) |
56.0 (51.6, 60.4) |
|
| Dyspnea | 75.2 (70.4, 79.9) |
75.2 (71.5, 78.8) |
75.2 (72.5, 77.9) |
75.2 (73.1, 77.3) |
75.2 (73.1, 77.3) |
75.2 (72.5, 78.0) |
75.2 (71.5, 79.0) |
|
| Incontinence | 50.0 (45.0, 55.1) |
50.1 (46.1, 54.0) |
50.1 (47.2, 53.0) |
50.1 (47.8, 52.3) |
50.1 (47.9, 52.3) |
50.1 (47.2, 53.0) |
50.1 (46.1, 54.1) |
|
| Severe fatigue | 69.3 (65.0, 73.5) |
69.0 (65.8, 72.2) |
68.7 (66.4, 71.1) |
68.5 (66.5, 70.5) |
68.2 (65.9, 70.6) |
68.0 (64.7, 71.2) |
67.7 (63.3, 72.1) |
|
| Anorexia | 69.4 (63.8, 75.0) |
69.4 (65.0, 73.8) |
69.3 (66.0, 72.7) |
69.3 (66.7, 71.9) |
69.3 (66.7, 71.9) |
69.2 (66.0, 72.5) |
69.2 (64.8, 73.5) |
|
| Frequent vomiting | 12.8 (8.4, 17.2) |
11.9 (8.8, 15.0) |
11.0 (9.0, 13.1) |
10.2 (8.8, 11.7) |
9.5 (8.0, 11.0) |
8.8 (6.8, 10.8) |
8.1 (5.5, 10.7) |
|
| Frailty | Moderate or severe pain | 41.4 (33.4, 49.4) |
41.1 (35.1, 47.2) |
40.8 (36.5, 45.1) |
40.5 (37.4, 43.6) |
40.2 (37.0, 43.5) |
39.9 (35.4, 44.5) |
39.6 (33.1, 46.1) |
| Any pain | 49.4 (41.6, 57.3) |
49.2 (43.0, 55.4) |
49.0 (44.3, 53.8) |
48.8 (45.1, 52.5) |
48.6 (45.2, 52.1) |
48.4 (44.3, 52.6) |
48.2 (42.6, 53.8) |
|
| Depression | 44.6 (38.0, 51.3) |
46.8 (41.6, 52.0) |
49.0 (45.1, 53.0) |
51.2 (48.1, 54.4) |
53.4 (50.2, 56.7) |
55.6 (51.5, 59.7) |
58.0 (52.5, 63.4) |
|
| Periodic confusion | 72.3 (64.8, 79.8) |
74.2 (68.5, 79.9) |
76.0 (71.8, 80.3) |
77.8 (74.5, 81.1) |
79.5 (76.4, 82.5) |
81.0 (77.6, 84.5) |
82.6 (78.4, 86.8) |
|
| Dyspnea | 30.6 (23.6, 37.6) |
30.6 (25.3, 35.9) |
30.6 (26.9, 34.3) |
30.6 (28.0, 33.2) |
30.6 (28.1, 33.2) |
30.6 (27.0, 34.3) |
30.7 (25.3, 36.0) |
|
| Incontinence | 64.2 (57.2, 71.2) |
64.7 (59.3, 70.0) |
65.1 (61.1, 69.2) |
65.6 (62.4, 68.8) |
66.1 (62.9, 69.3) |
66.6 (62.4, 70.7) |
67.1 (61.5, 72.6) |
|
| Severe fatigue | 56.2 (48.4, 63.9) |
55.3 (49.5, 61.1) |
54.5 (50.3, 58.7) |
53.7 (50.3, 57.1) |
52.9 (48.9, 56.8) |
52.0 (46.5, 57.6) |
51.1 (43.5, 58.8) |
|
| Anorexia | 70.9 (61.9, 79.8) |
69.6 (62.7, 76.4) |
68.3 (63.5, 73.1) |
67.0 (63.6, 70.3) |
65.6 (62.0, 69.1) |
64.2 (58.8, 69.6) |
62.7 (54.6, 70.8) |
|
| Frequent vomiting | 7.1 (4.1, 10.2) |
6.8 (4.7, 9.0) |
6.5 (5.0, 8.1) |
6.3 (4.7, 7.8) |
6.0 (4.0, 7.9) |
5.7 (3.2, 8.3) |
5.5 (2.2, 8.7) |
|
| Sudden death | Moderate or severe pain | 40.5 (33.0, 48.1) |
40.7 (35.0, 46.4) |
40.8 (36.7, 44.8) |
40.9 (38.0, 43.8) |
41.0 (38.1, 43.9) |
41.1 (37.0, 45.2) |
41.3 (35.4, 47.2) |
| Any pain | 49.0 (41.8, 56.3) |
49.7 (44.3, 55.0) |
50.3 (46.5, 54.0) |
50.9 (48.0, 53.8) |
51.6 (48.0, 55.1) |
52.2 (47.2, 57.2) |
52.9 (45.8, 59.9) |
|
| Depression | 38.7 (32.3, 45.1) |
39.8 (34.9, 44.7) |
40.9 (37.3, 44.5) |
42.0 (39.2, 44.9) |
43.1 (39.9, 46.4) |
44.3 (39.7, 48.8) |
45.5 (39.2, 51.8) |
|
| Periodic confusion | 26.4 (19.4, 33.3) |
28.1 (22.5, 33.6) |
29.8 (25.6, 33.9) |
31.5 (28.6, 34.5) |
33.4 (30.8, 35.9) |
35.2 (31.8, 38.6) |
37.2 (32.1, 42.4) |
|
| Dyspnea | 34.6 (29.0, 40.2) |
36.6 (32.2, 41.1) |
38.7 (35.2, 42.2) |
40.9 (37.8, 43.9) |
43.0 (39.6, 46.4) |
45.2 (40.8, 49.6) |
47.6 (41.7, 53.5) |
|
| Incontinence | 28.7 (20.8, 36.6) |
29.9 (23.7, 36.1) |
31.1 (26.6, 35.6) |
32.3 (29.1, 35.6) |
33.6 (30.6, 36.6) |
34.9 (30.8, 39.0) |
36.3 (30.2, 42.3) |
|
| Severe fatigue | 44.8 (37.7, 51.9) |
45.7 (40.4, 51.0) |
46.6 (43.0, 50.3) |
47.5 (44.9, 50.2) |
48.5 (45.5, 51.5) |
49.4 (44.9, 53.9) |
50.4 (44.0, 56.8) |
|
| Anorexia | 37.5 (30.9, 44.1) |
38.4 (33.5, 43.3) |
39.2 (35.6, 42.9) |
40.1 (36.8, 43.5) |
41.0 (36.7, 45.3) |
41.9 (36.0, 47.8) |
42.8 (34.9, 50.8) |
|
| Frequent vomiting | 6.4 (2.9, 9.8) |
6.7 (4.0, 9.4) |
7.0 (5.1, 9.0) |
7.4 (6.1, 8.8) |
7.8 (6.5, 9.2) |
8.2 (6.2, 10.3) |
8.7 (5.4, 11.9) |
|
Analysis accounts for complex survey design
Adjusted prevalence is predicted from regression models of each symptom on time of death, controlling for age at death, gender, race/ethnicity, number of nights spent in a hospital in the last two years of life, nursing home residency at the time of death and length of nursing home residency prior to death (regardless of site of death), number of ADL dependencies (0-6 scale), diagnosis of arthritis (pain models only), depression reported in interview wave prior to death, highest level of education, household wealth, household income, proxy relationship to decedent, time elapsed between decedent's death and proxy's interview, average hours per week of care given to decedent from all informal carers, highest level of education if proxy was spouse, English/Spanish preference for interview, and year that the decedent entered the HRS sample
Appendix Table 5. Adjusted Total Percent Change in Prevalence of Symptoms between 1998 and 2010 (Fully Adjusted Models Excluding 2002 Survey Wave)a.
| Adjusted % Change (95% CIs)b | |||||
|---|---|---|---|---|---|
| Outcome | Entire Population (n = 7,204) |
Cancer (n = 1,546) |
CHF or Chronic Lung Disease (n = 2,293) |
Frailty (n = 1,175) |
Sudden Death (n = 1,161) |
| Moderate or severe pain | 6.0 (-3.9, 18.0) |
6.5 (-10.3, 28.1) |
2.6 (-13.7, 22.7) |
-4.3 (-30.9, 31.9) |
1.8 (-23.4, 40.2) |
| Any pain | 10.0 (1.1, 20.5) |
11.6 (-4.6, 32.0) |
10.3 (-4.6, 29.1) |
-2.4 (-25.7, 27.0) |
7.8 (-15.1, 39.1) |
| Depression | 26.4 (13.7, 40.5) |
6.7 (-14.1, 31.9) |
30.1 (9.9, 55.4) |
31.5 (3.9, 72.0) |
20.7 (-9.5, 61.8) |
| Periodic confusion | 27.7 (15.0, 41.6) |
12.8 (-13.2, 47.6) |
21.0 (2.1, 45.5) |
13.7 (-0.5, 31.4) |
46.3 (4.2, 113.4) |
| Dyspnea | 9.8 (-0.4, 21.3) |
7.4 (-14.6, 32.8) |
0.6 (-9.1, 12.7) |
1.2 (-33.8, 46.7) |
35.9 (0.8, 87.1) |
| Incontinence | 9.5 (-1.9, 21.2) |
-6.9 (-29.6, 22.2) |
2.0 (-14.5, 21.9) |
4.5 (-14.1, 26.2) |
33.3 (-4.0, 95.4) |
| Severe fatigue | 2.9 (-5.2, 11.5) |
4.0 (-9.0, 18.3) |
-1.6 (-12.9, 12.4) |
-8.7 (-28.0, 16.3) |
13.0 (-13.3, 49.4) |
| Anorexia | 4.2 (-3.6, 12.3) |
7.2 (-4.1, 20.1) |
-0.2 (-12.2, 13.5) |
-12.4 (-27.6, 5.7) |
15.3 (-17.4, 55.5) |
| Frequent vomiting | -10.1 (-33.1, 21.7) |
20.5 (-21.7, 91.9) |
-32.5 (-61.7, 28.6) |
-22.1 (-65.1, 95.0) |
41.0 (-39.8, 226.9) |
Analysis accounts for complex survey design
Percent change is predicted from fully adjusted regression models of each symptom on date of death; confidence intervals are bootstrapped
Appendix Table 6. Adjusted Average Yearly Percent Change in Prevalence of Symptoms between 1998 and 2010 (Fully Adjusted Models)a.
| Adjusted % Change (95% CIs)b | |||||
|---|---|---|---|---|---|
| Outcome | Entire Population (n = 7,204) |
Cancer (n = 1,546) |
CHF or Chronic Lung Disease (n = 2,293) |
Frailty (n = 1,175) |
Sudden Death (n = 1,161) |
| Moderate or severe pain | 1.4 (-0.4, 3.2) | 1.2 (-3.0, 5.5) | 0.7 (-2.2, 3.8) | 1.4 (-3.5, 6.5) | -0.4 (-4.7, 4.2) |
| Any pain | 2.4 (0.6, 4.1) | 2.0 (-2.2, 6.3) | 2.5 (-0.2, 5.3) | 2.4 (-1.5, 6.3) | 1.6 (-3.0, 6.4) |
| Depression | 3.8 (2.0, 5.7) | 1.4 (-2.1, 4.9) | 4.3 (1.3, 7.4) | 5.7 (1.8, 9.8) | 2.1 (-2.1, 6.5) |
| Periodic confusion | 5.4 (3.6, 7.2) | 3.6 (-0.2, 7.5) | 4.7 (1.7, 7.8) | 7.8 (2.6, 13.2) | 5.8 (0.6, 11.4) |
| Dyspnea | 1.3 (-0.1, 2.7) | 0.3 (-2.8, 3.5) | 0.2 (-3.1, 3.6) | 1.1 (-3.1, 5.5) | 5.0 (1.6, 8.6) |
| Incontinence | 2.0 (-0.2, 4.2) | -0.8 (-3.8, 2.4) | 1.5 (-1.5, 4.6) | 1.1 (-2.9, 5.1) | 3.4 (-2.5, 9.7) |
| Severe fatigue | 1.2 (-0.7, 3.2) | 3.0 (-2.1, 8.3) | -0.8 (-4.0, 2.5) | -0.1 (-4.1, 4.1) | 2.9 (-1.6, 7.5) |
| Anorexia | 1.3 (-0.8, 3.4) | 3.0 (-1.3, 7.5) | 0.3 (-3.0, 3.7) | -1.5 (-7.1, 4.4) | 2.0 (-2.8, 7.0) |
| Frequent vomiting | -1.1 (-3.6, 1.4) | 0.8 (-3.7, 5.6) | -3.9 (-8.6, 1.1) | -3.0 (-12.0, 6.9) | 5.4 (-2.7, 14.2) |
Analysis accounts for complex survey design
Adjusted percent change is predicted from regression models of each symptom on survey year, controlling for age at death, gender, race/ethnicity, number of nights spent in a hospital in the last two years of life, nursing home residency at the time of death and length of nursing home residency prior to death (regardless of site of death), number of ADL dependencies (0-6 scale), diagnosis of arthritis (pain models only), depression reported in interview wave prior to death, highest level of education, household wealth, household income, proxy relationship to decedent, time elapsed between decedent's death and proxy's interview, average hours per week of care given to decedent from all informal carers, highest level of education if proxy was spouse, English/Spanish preference for interview, and year that the decedent entered the HRS sample
Footnotes
Potential Conflicts of Interest: Adam Singer, Daniella Meeker, Joan Teno, Joanne Lynn, and June Lunney all report no potential conflicts of interest. Karl Lorenz has served as a consultant to Otsuka Pharmaceuticals as a member of the Data Monitoring Committee for the Phase II development of Sativex, a novel cannabinoid analgesic.
Reproducible Research Statement: Data set: Available through the Health and Retirement Study (http://hrsonline.isr.umich.edu/).
Disclaimer: The views expressed are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs or the US government.
This work was presented at the American Academy of Hospice and Palliative Medicine (AAHPM) 2014 Annual Assembly, where it received the AAHPM Investigator Paper Award in the Student Category.
References
- 1.Approaching Death: Improving Care at the End of Life. Washington, D.C: Institute of Medicine; 1997. [Google Scholar]
- 2.NIH State-of-the-Science Conference Statement on improving end-of-life care. NIH Consens State Sci Statements. 2004;21(3):1–26. [PubMed] [Google Scholar]
- 3.National Consensus Project for Quality Palliative Care. [Accessed February 25, 2014]; http://www.nationalconsensusproject.org/
- 4.National Voluntary Consensus Standards: Palliative Care and End-of-Life Care–A Consensus Report. Washington, D.C.: National Quality Forum; 2012. [Google Scholar]
- 5.Morrison RS, Augustin R, Souvanna P, Meier DE. America's Care of Serious Illness: A State-by-State Report Card on Access to Palliative Care in Our Nation's Hospitals. J Palliat Med. 2011;14(10):1094–1096. doi: 10.1089/jpm.2011.9634. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6.Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research. Washington, D.C.: Institute of Medicine; 2011. [PubMed] [Google Scholar]
- 7.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;309(5):470–477. doi: 10.1001/jama.2012.207624. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8.Lorenz KA, Lynn J, Dy SM, et al. Evidence for Improving Palliative Care at the End of Life: A Systematic Review. Ann Intern Med. 2008;148(2):147–159. doi: 10.7326/0003-4819-148-2-200801150-00010. [DOI] [PubMed] [Google Scholar]
- 9.Priorities for the National Quality Strategy. Washington, D.C.: National Quality Forum; 2011. [Google Scholar]
- 10.Future Directions for the National Healthcare Quality and Disparities Reports. Washington, D.C.: Institute of Medicine; 2010. [PubMed] [Google Scholar]
- 11.Dy SM, Aslakson R, Wilson RF, et al. Improving Health Care and Palliative Care for Advanced and Serious Illness. Rockville, MD: Agency for Healthcare Research and Quality; 2012. [Google Scholar]
- 12.Solano JP, Gomes B, Higginson IJ. A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain Symptom Manage. 2006;31(1):58–69. doi: 10.1016/j.jpainsymman.2005.06.007. [DOI] [PubMed] [Google Scholar]
- 13.Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284(19):2476–2482. doi: 10.1001/jama.284.19.2476. [DOI] [PubMed] [Google Scholar]
- 14.Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre LM, Tulsky JA. In search of a good death: observations of patients, families, and providers. Ann Intern Med. 2000;132(10):825–832. doi: 10.7326/0003-4819-132-10-200005160-00011. [DOI] [PubMed] [Google Scholar]
- 15.Improving Palliative Care for Cancer: Summary and Recommendations. Washington, D.C.: Institute of Medicine; 2001. [PubMed] [Google Scholar]
- 16.Juster FT, Suzman R. An Overview of the Health and Retirement Study. J Hum Resour. 1995;30(Suppl):S7–S56. [Google Scholar]
- 17.Health and Retirement Study Survey Design. [Accessed February 25, 2014]; http://hrsonline.isr.umich.edu/sitedocs/surveydesign.pdf.
- 18.Reyes-Gibby CC, Aday LA, Anderson KO, Mendoza TR, Cleeland CS. Pain, depression, and fatigue in community-dwelling adults with and without a history of cancer. J Pain Symptom Manage. 2006;32(2):118–128. doi: 10.1016/j.jpainsymman.2006.01.008. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 19.Steffick DE. Documentation of Affective Functioning Measures in the Health and Retirement Study. Ann Arbor, MI: University of Michigan; 2000. [Google Scholar]
- 20.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]
- 21.Lunney JR, Lynn J, Foley DJ, Lipson S, Guralnik JM. Patterns of functional decline at the end of life. JAMA. 2003;289(18):2387–2392. doi: 10.1001/jama.289.18.2387. [DOI] [PubMed] [Google Scholar]
- 22.Hogan C, Lunney J, Gabel J, Lynn J. Medicare beneficiaries' costs of care in the last year of life. Health Aff (Millwood) 2001;20(4):188–195. doi: 10.1377/hlthaff.20.4.188. [DOI] [PubMed] [Google Scholar]
- 23.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]
- 24.Efron B. Better bootstrap confidence intervals. J Am Stat Assoc. 1987;82(397):171–185. [Google Scholar]
- 25.Royston P. Multiple imputation of missing values: further update of ice, with an emphasis on categorical variables. The Stata Journal. 2009;9(3):466–477. [Google Scholar]
- 26.Rubin DB. Multiple imputation after 18+ years. J Am Stat Assoc. 1996;91(434):473–489. [Google Scholar]
- 27.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;170(12):1057–1063. doi: 10.1001/archinternmed.2010.175. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 28.Dy SM, Asch SM, Lorenz KA, et al. Quality of End-of-Life Care for Patients with Advanced Cancer in an Academic Medical Center. J Palliat Med. 2011;14(4):451–457. doi: 10.1089/jpm.2010.0434. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 29.Malin JL, O'Neill SM, Asch SM, et al. Quality of supportive care for patients with advanced cancer in a VA medical center. J Palliat Med. 2011;14(5):573–577. doi: 10.1089/jpm.2010.0464. [DOI] [PubMed] [Google Scholar]
- 30.Langley PC, Liedgens H. The impact of pain severity and frequency on HRQoL in the big 5 european union countries. Prague, Czech Republic: 2010. [Google Scholar]
- 31.Lorenz KA, Shapiro MF, Asch SM, Bozzette SA, Hays RD. Associations of symptoms and health-related quality of life: findings from a national study of persons with HIV infection. Ann Intern Med. 2001;134(9 Pt 2):854–860. doi: 10.7326/0003-4819-134-9_part_2-200105011-00009. [DOI] [PubMed] [Google Scholar]
- 32.Fine RL. Ethical and practical issues with opioids in life-limiting illness. Proc (Bayl Univ Med Cent) 2007;20(1):5–12. doi: 10.1080/08998280.2007.11928223. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 33.Barbera L, Seow H, Howell D, et al. Symptom burden and performance status in a population-based cohort of ambulatory cancer patients. Cancer. 2010;116(24):5767–5776. doi: 10.1002/cncr.25681. [DOI] [PubMed] [Google Scholar]
- 34.Currow DC, Smith J, Davidson PM, Newton PJ, Agar MR, Abernethy AP. Do the trajectories of dyspnea differ in prevalence and intensity by diagnosis at the end of life? A consecutive cohort study. J Pain Symptom Manage. 2010;39(4):680–690. doi: 10.1016/j.jpainsymman.2009.09.017. [DOI] [PubMed] [Google Scholar]
- 35.NHPCO Facts and Figures: Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization; 2013. [Google Scholar]
- 36.Ben-Aharon I, Gafter-Gvili A, Leibovici L, Stemmer SM. Interventions for alleviating cancer-related dyspnea: a systematic review and meta-analysis. Acta Oncol. 2012;51(8):996–1008. doi: 10.3109/0284186X.2012.709638. [DOI] [PubMed] [Google Scholar]
- 37.Walling AM, Asch SM, Lorenz KA, et al. The quality of supportive care among inpatients dying with advanced cancer. Support Care Cancer. 2012;20(9):2189–2194. doi: 10.1007/s00520-012-1462-3. [DOI] [PubMed] [Google Scholar]
- 38.Walling AM, Tisnado D, Asch SM, et al. The quality of supportive cancer care in the veterans affairs health system and targets for improvement. JAMA Intern Med. 2013;173(22):2071–2079. doi: 10.1001/jamainternmed.2013.10797. [DOI] [PubMed] [Google Scholar]
- 39.McPherson CJ, Addington-Hall JM. Judging the quality of care at the end of life: can proxies provide reliable information? Soc Sci Med. 2003;56(1):95–109. doi: 10.1016/s0277-9536(02)00011-4. [DOI] [PubMed] [Google Scholar]
- 40.Hospice Experience of Care Survey. [Accessed August 12, 2014]; http://cms.gov/Research-Statistics-Data-and-Systems/Research/CAHPS/hospice_survey.html.