Comments
Abstract
Rationale: The burden of advanced chronic obstructive pulmonary disease (COPD) is high globally; however, little is known about how often end-of-life strategies are used by this population.
Objectives: To describe trends in the use of end-of-life care strategies by people with advanced COPD in Ontario, Canada.
Methods: A population-based repeated cross-sectional study examining end-of-life care strategies in individuals with advanced COPD was conducted. Annual proportions of individuals who received formal palliative care, long-term oxygen therapy, or opioids from 2004 to 2014 were determined. Results were age and sex standardized and stratified by age, sex, socioeconomic status, urban/rural residence, and immigrant status.
Measurement/Main Results: There were 151,912 persons with advanced COPD in Ontario between 2004 and 2014. Use of formal palliative care services increased 1% per year from 5.3% in 2004 to 14.3% in 2014 (P value for trend < 0.001), whereas use of long-term oxygen therapy increased 1.1% per year from 26.4% in 2004 to 35.3% in 2013 (P value for trend < 0.001). The use of opioids was relatively stable (40.0% in 2004 and 41.8% in 2014; P value for trend = 0.08). Younger individuals were less likely to use formal palliative care services and long-term oxygen therapy. Males were less likely than females to receive long-term oxygen therapy and opioids.
Conclusions: The proportion of people with advanced COPD using end-of-life strategies, although increasing, remains low. Efforts should focus on increasing access to such strategies and educating patients and providers of their benefits.
Persons with advanced chronic obstructive pulmonary disease (COPD) suffer from symptoms and general poor quality of life that may benefit from a palliative care approach focusing on reducing symptom burden and alleviating suffering. Previous studies have shown that persons with COPD are less likely to receive palliative care than those with other life-limiting illnesses. Few population studies have quantified or trended the use of end-of-life strategies among this population.
In our population-based study we found that the proportion of people with advanced COPD using end-of-life strategies, although increasing, remains low. Rates of formal palliative care and long-term oxygen utilization have increased over time, whereas rates of opioid utilization have remained stable. Additional research is needed to better understand the gaps in end-of-life care provided to persons with advanced COPD.
Many persons with advanced chronic obstructive pulmonary disease (COPD) suffer from uncontrolled symptoms, psychologic morbidity, and social isolation with a quality of life similar to or worse than some people living with cancer (1, 2). Rather than receiving aggressive treatments aimed at prolonging life, persons with COPD may benefit from palliative care approaches that focus on alleviating symptoms and suffering (3). Evidence has shown that formal palliative care improves quality of life, reduces depression, lowers symptom intensity, and prolongs life for people with cancer (4, 5). The same approach can help people with COPD (3). Likewise, long-term oxygen therapy (LTOT) and opioids, as recommended by American Thoracic Society and Canadian Thoracic Society practice guidelines (6–10), have the potential to improve quality of life and reduce symptoms in persons with advanced COPD living with intractable dyspnea (11).
Despite the potential benefits of formal palliative care services, opioids, and LTOT in patients with advanced COPD, little is known about how often these strategies are used. Previous studies have shown that individuals with COPD are less likely to be referred for formal palliative care than people with other conditions, such as dementia or cancer (12–14). However, these studies focused on palliative care in decedents during the year before death. Given that predicting death in people with COPD is difficult (15), the previous studies did not capture all potential people living with advanced COPD who could benefit from end-of-life strategies. The inclusion of all people would offer a more complete picture of palliative care needs of this population. In addition, previous studies did not capture other end-of-life strategies, such as LTOT or opioid use, interventions that may occur outside the context of formal palliative care.
To characterize end-of-life management provided to persons with advanced COPD, we examined trends in the use of formal palliative care services, LTOT, and opioids as well as sociodemographic factors associated with their use. Quantifying palliative therapy use among people with advanced COPD can assist in identifying gaps in care that can be addressed and resources that can be used to optimize quality of life in this population. Some of the results of this study have been previously reported in the form of an abstract (16).
We conducted a population-based repeated cross-sectional study using linked health administrative data from Ontario, the largest province of Canada with a population of approximately 13 million. Our study received ethics approval from the institutional review board at Sunnybrook Health Sciences Centre, Toronto, Ontario.
Residents of Ontario have universal public health insurance under the Ontario Health Insurance Plan, the single payer for all medically necessary services across all providers and hospitals. Eight Ontario health administrative databases were used, which are described in detail in the online supplement. These databases describe basic demographic information and, as appropriate, date of death; all discharges from acute care hospitals, same day surgical procedures, and emergency department visits; all services provided by physicians; all home care services provided by provincial community care centers; prescription medications provided to those age 65 and older; information on all immigrants who arrived in Ontario between 1985 and 2012; and information on the use of LTOT. Finally, census data were used to estimate neighborhood income quintile as a measure of socioeconomic status (17). Neighborhood income quintiles are based on average income in a dissemination area adjusted for household size relative to the income of the surrounding census metropolitan region. These datasets were linked using unique encoded identifiers and analyzed at the Institute for Clinical Evaluative Sciences.
Ontario residents aged 40 and older with advanced COPD before the start of each fiscal year (April 1 to March 31) from 2004 to 2014 were included. People with physician-diagnosed COPD were identified using a validated health administrative data case definition (18). Within this cohort, people with advanced COPD were identified as those with one or more hospitalizations for COPD and/or those who received LTOT (see the online supplement for codes). Sensitivity analyses were performed using more restrictive definitions of advanced COPD including ones that did not rely on LTOT (see later). Individuals were assessed for advanced COPD at the beginning of each fiscal year. Previous studies demonstrate that persons with advanced COPD defined by lower lung function (19) or by previous hospitalizations have higher mortality rates (20, 21) than others with COPD.
The advanced COPD population was characterized in terms of sociodemographic factors, acute care health service utilization, and mortality. All-cause mortality was considered because about half of deaths caused by COPD are misattributed to other causes on vital statistics death records (22, 23).
Primary outcomes were rates of formal palliative care service use (including that provided in a hospital, outpatient, or palliative care unit/hospice setting), opioid use, and LTOT in each fiscal year. All opioid receipt was considered because it was difficult to be certain if opioids were given specifically for dyspnea from our data. Opioid use was measured in a subcohort of patients aged 67 years and older to allow adequate time for individuals to become enrolled in the provincial drug insurance program after eligibility at age 65. In Ontario, LTOT is provided for resting or exertional hypoxemia but not for symptoms alone. Once an individual was identified as receiving LTOT, they were presumed to require it in subsequent years. Oxygen provided as part of formal palliative care services was measured as part of that outcome. Additional details on outcomes can be found in the online supplement.
Annual prevalence of each outcome and 95% confidence intervals were calculated for fiscal years 2004 to 2014. Estimates were directly age and sex standardized to the Ontario 2014 advanced COPD population. Annual percent change of each outcome and tests for trend were estimated using linear regression. Estimates were stratified by sociodemographic factors and age and sex standardized, where appropriate.
In two separate sensitivity analyses designed to determine if results were robust to the methods used to identify people with advanced COPD, we restricted the cohort to people with COPD who required two or more hospitalizations in the previous 2 years and people with COPD who were admitted to an ICU in the previous year. Of note, unlike our main method, LTOT was not used to identify people with advanced COPD. We conducted a third analysis quantifying use of formal palliative care services within the last 6 and 12 months of life among people who died to examine utilization specifically during the end-of-life period. Statistical analyses were performed using SAS version 9.3 (SAS Institute).
There were 151,912 persons with advanced COPD living in Ontario between 2004 and 2014. In 2014, about four out of five were age 65 and older, just over half were female, and about two-thirds of lower to middle socioeconomic status (Table 1). Less than one-fifth lived in rural areas and there were relatively few immigrants. About two-thirds received spirometry in the previous 5 years and approximately one-quarter had a diagnosis of congestive heart failure and/or ischemic heart disease.
| Percentage (N = 32,270) | |
|---|---|
| Female sex | 52.6 |
| Age, yr | |
| 40–49 | 2.2 |
| 50–64 | 19.0 |
| 65–79 | 41.7 |
| ≥80 | 37.2 |
| Neighborhood income quintile | |
| 1 (lowest) | 26.7 |
| 2 | 21.9 |
| 3 | 19.4 |
| 4 | 17.5 |
| 5 (highest) | 14.0 |
| Rural (compared with urban) residence | 18.2 |
| Immigrant | 4.0 |
| Spirometry in previous 5 yr | 67.1 |
| Ischemic heart disease | 24.5 |
| Heart failure | 26.8 |
| Lung cancer diagnosis in previous 5 yr | 3.8 |
In 2014, about one in four individuals with advanced COPD had a COPD-related hospitalization. This trend was stable between 2004 and 2014 (Figure 1). In contrast, the proportions who were admitted to an ICU who required invasive or who required noninvasive ventilation slightly increased over time. Mortality rate for advanced COPD remained stable over the study period at around 18% (Figure 2).
Figure 1. Trends in the percentage of individuals with advanced chronic obstructive pulmonary disease (COPD) using acute care services in Ontario, Canada (2004–2014). This line graph displays the health care use (i.e., COPD hospitalization, COPD emergency department visit, COPD ICU stay, use of invasive ventilation, and use of noninvasive ventilation) among persons with advanced COPD in Ontario over time from 2004 to 2014. ED = emergency department.
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Figure 2. Trends in mortality of individuals with advanced chronic obstructive pulmonary disease in Ontario, Canada (2004–2014). This line graph displays the mortality among persons with advanced chronic obstructive pulmonary disease in Ontario over time from 2004 to 2014.
[More] [Minimize]The percentage of patients with advanced COPD who received formal palliative care services increased at a rate of approximately 1% per year (Ptrend < 0.001) from 5.3% in 2004 to 14.3% in 2014 (Figure 3). Older individuals were more likely to receive palliative care services than younger ones (Figure 4).
Figure 3. Age- and sex-standardized trends in percentage of individuals with advanced chronic obstructive pulmonary disease using end-of-life services, Ontario, Canada (2004–2014). This line graph displays the prevalence of the use of end-of-life services (i.e., long-term oxygen therapy, formal palliative care, and opioids) among persons with advanced chronic obstructive pulmonary disease in Ontario over time from 2004 to 2014. *Data not available for 2014. †Calculated among persons age 67 and older. All estimates are age and sex standardized to the 2014 advanced chronic obstructive pulmonary disease population.
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Figure 4. Standardized percentage of individuals with advanced chronic obstructive pulmonary disease (COPD) using formal palliative care by sociodemographic factors (2014). This forest plot displays the percentage of persons with advanced COPD who used formal palliative care services in Ontario in 2014, stratified by sociodemographic factors (i.e., age, sex, residence, income quintile, and immigration status). Estimates are age and sex standardized as appropriate. Overall, urban/rural, income quintile, and immigration status estimates are age and sex standardized to the 2014 advanced COPD population. Age-specific estimates are sex standardized, and sex estimates are age standardized to the 2014 advanced COPD population.
[More] [Minimize]In 2004, a little more than a quarter of persons with advanced COPD received LTOT and this increased at a rate of 1.1% per year (Ptrend < 0.001) to 35.3% in 2013, the most recent year of data available (Figure 3). In this year, females and individuals age 65–79 were more likely to receive LTOT than males and younger and older adults, respectively. Immigrants were less likely to receive LTOT than long-term residents (Figure 5).
Figure 5. Standardized percentage of individuals with advanced chronic obstructive pulmonary disease (COPD) using long-term oxygen therapy by sociodemographic factors (2014). This forest plot displays the percentage of persons with advanced COPD who used long-term oxygen therapy in Ontario in 2014, stratified by sociodemographic factors (i.e., age, sex, residence, income quintile, and immigration status). Estimates are age and sex standardized as appropriate. Overall, urban/rural, income quintile, and immigration status estimates are age and sex standardized to the 2014 advanced COPD population. Age-specific estimates are sex standardized, and sex estimates are age standardized to the 2014 advanced COPD population.
[More] [Minimize]About 40% of people with advanced COPD aged 67 years and older received an opioid medication in each fiscal year. The rate of increase was nonsignificant (0.1% increase per year; Ptrend = 0.08). Males, individuals 67–79 years, and immigrants were less likely to receive opioids than females, adults age 80 and older, and people who did not immigrate, respectively (Figure 6).
Figure 6. Standardized percentage of individuals with advanced chronic obstructive pulmonary disease (COPD) using opioids by sociodemographic factors (2014). This forest plot displays the percentage of persons with advanced COPD who used opioids in Ontario in 2014, stratified by sociodemographic factors (i.e., age, sex, residence, income quintile, and immigration status). Estimates are age and sex standardized as appropriate. Overall, urban/rural, income quintile, and immigration status estimates are age and sex standardized to the 2014 advanced COPD population. Age-specific estimates are sex standardized, and sex estimates are age standardized to the 2014 advanced COPD population.
[More] [Minimize]When persons with advanced COPD were identified using alternative definitions of those who had two or more hospitalizations in the previous 2 years or those with an ICU admission in the previous year, there were slightly higher proportions of people who received formal palliative care, opioids, and LTOT. The trends in the use of end-of-life strategies were similar across the different advanced COPD definitions (see Tables E1–E3 in the online supplement). Among decedents with advanced COPD in 2014, a total of 44.0% and 42.6% received formal palliative care services in the last 12 and 6 months of life, respectively.
We conducted a large repeated cross-sectional population-based study of the use of end-of-life strategies among persons with advanced COPD, a population that has been historically understudied, and found that although the proportion using end-of-life strategies has mostly increased over time, it still remains low. We also uncovered sociodemographic differences in the use of such strategies. To the best of our knowledge, this is the first population-level examination of end-of-life strategy use among people with advanced COPD. Persons with advanced COPD suffer from uncontrolled symptoms, psychologic morbidity, and social isolation that could benefit from a palliative care approach (1, 24). Although we would not expect all patients to required palliative therapies, these results suggest that there is potentially more one can offer them in terms of support and care that may, in turn, reduce their need for acute health services. These results also offer physicians and decision makers some guidance on how to plan for the future needs of this population.
Our findings agree with previous studies that found high rates of health services use and low rates of formal palliative care use in COPD populations during their last year or months of life (13, 14, 25–28). A recent study using primary care electronic health care records in the United Kingdom found that 21.4% of decedents with COPD in 2014 received palliative care services (28). We observed higher use of palliative care services among decedents, (44.0% in the last 12 mo of life); however, our study population included individuals who had a previous COPD hospitalization, a group who likely had greater access to such services than those in primary care. Similar to our study, the U.K. study found older persons more likely to receive palliative care (28). Unlike our study, it found females more likely to receive palliative care services (28).
Other studies have also shown variation in palliative care service use among decedents with COPD. A study of in-hospital deaths in Hong Kong found that only 3.6% of patients with COPD received formal palliative care in the last 6 months of life (13). A study from Saskatchewan, Canada found that only 5.1% of individuals with COPD who died received palliative care in hospital and only 2.8% received palliative home-care services (14). A Taiwanese study of patients who died of COPD in an acute care hospital found that 21.4% were referred to hospice care and 48.5% were intubated (29). Almost one-third (32.6%) of these patients were admitted to the ICU in the last 6 months of life, with 61.3% admitted to hospital overall (27). Finally, a Danish study found that 24.4% patients with COPD received noninvasive ventilation within the 6 months before death and 93.7% were hospitalized within the last 3 years of life with 40.4% experiencing five or more hospitalizations (26). Our study expands on these findings by quantifying the use of end-of-life strategies in a large population of people with advanced COPD who could benefit from end-of-life interventions, not just those where death was known to have already occurred. This provides a prospective clinical view more useful for anticipating the needs of people with advanced COPD and health service planning.
Our study found higher rates of opioid use than were noted in previous studies (27, 29). Chou and colleagues (29) found only approximately 11% of patients with COPD who had died in a hospital in Taiwan had used opioids, with only 6% of palliative patients receiving opioids. Au and colleagues (27) found that 25% of veterans with COPD received a prescription for an opioid during the last 6 months of life. Higher use of opioids in our study population may have been caused by capturing use for other indications in addition to COPD. We did not have clinical details to determine if this was the case. Nonetheless, regardless of their indication, such medications would help palliate severe dyspnea (and, indeed, sometimes medications may be used for more than one reason). A meta-analysis of 14 studies examining dyspnea associated with COPD or other lung diseases, cancer, or congestive heart failure showed that opioids were associated with a statistically significant decrease in breathlessness (30). A recent study demonstrated that opioid use in severe COPD may increase the risk of death but lower the risk of acute exacerbations (31). Opioids may not be prescribed to treat dyspnea in patients with severe COPD because of lack of knowledge, education, and perceived lack of guidelines (32). Management of individuals with advanced COPD using opioids is an area deserving of future study to better understand the risk-benefit profile in these severely ill patients.
We found that younger individuals were less likely to use formal palliative care and use LTOT, which may indicate lower need or less recognition or acceptance of severe disease in this population. Females received more opioids and LTOT, whereas their use of palliative care services was similar to males. The higher LTOT use in females is consistent with a study examining Medicare beneficiaries with COPD in the United States, which found that 22.4% received sustained oxygen therapy (24.0% among females and 20.6% among males) (33). These rates of use were lower than found in our study; however, our analysis included only patients with advanced COPD as opposed to all with COPD. In general, immigrants were less likely to use LTOT and opioids than long-term residents. This is consistent with a previous study in the Netherlands that showed that immigrants with COPD displayed lower levels of medication use compared with native Dutch individuals (34).
A palliative care approach is challenging to implement in patients with advanced COPD for a variety of reasons, including limited availability of palliative resources, lack of research evidence to guide treatment decisions, and misperceptions that a palliative approach to care means abandoning active care for the underlying medical condition (1, 35). Barriers to advanced care planning for patients with advanced COPD include lack of staff training and confidence, perceived family and patient reluctance, lack of time, and unpredictable disease progression (36). Despite these challenges, experts in palliative care recommend that health care providers introduce end-of-life discussions and palliative care strategies, such as opioid use, from the time of diagnosis when death is not necessarily immediately foreseeable, and at a point when other active treatments are still being pursued (3). If successful, this approach has the potential to decrease futile acute health care services use among this sick population.
To the best of our knowledge, there have been no previous large-scale population-based studies of end-of-life care in patients with advanced COPD whose life expectancy is unknown and difficult to prognosticate. The strengths of our study are its use of large, comprehensive health administrative databases of the entire Ontario population to identify a cohort of individuals with advanced COPD based on a previously validated case definition. We followed the cohort over 10 years to determine incidence of end-of-life care, health care utilization, and mortality.
Despite the strengths of our study, there are some limitations that merit emphasis. The main limitation is that, although we are able to delineate a cohort of people with advanced COPD, we did not have the clinical detail to determine if end-of-life strategies were specifically indicated. It is possible that some persons hospitalized with COPD captured by our definition of advanced COPD were not appropriate candidates for end-of-life care. We also do not have established benchmarks of the correct proportion of people with advanced COPD who should receive each of these strategies. Nonetheless, we did capture a group with severe disease in whom it is recommended that such strategies be considered.
A second limitation is that we could not be sure of why patients were receiving specific end-of-life management, because patients with COPD are known to have comorbidities including lung cancer that may also require palliative care services. This was likely most pronounced for opioid use, because these medications are more commonly prescribed for pain than dyspnea (e.g., musculoskeletal disorders). Furthermore, because opioid use was not specific to dyspnea, we could not be sure of the trends for this indication specifically. Even so, these strategies are nonspecific and, even if they were prescribed for something else (like chronic pain), they would also help for COPD. This could mean, however, that we overestimated use of end-of-life strategies specifically for COPD and the actual proportions receiving end-of-life care may be even lower. Finally, our study was largely descriptive and our standardized estimates of indicator prevalence stratified by demographic characteristics were not adjusted for disease severity, socioeconomic status, or other patient characteristics. Thus, it is possible that some of the differences observed were caused by these factors.
We conducted a large population-based study of end-of-life management among persons with advanced COPD and found that, although end-of-life care is increasingly used, there seems to be potential to expand end-of-life services to meet the needs of this very ill population. More work is needed to better understand the gaps in health care services and unmet needs of people with COPD as they near the end of life and establish ideal levels of use, or benchmarks, for future quality improvement. This would assist clinicians to better anticipate the needs of their own patients with COPD and allow health system planners and policy makers to direct resources appropriately.
Parts of this material are based on data and/or information compiled and provided by the Canadian Institute for Health Information. However, the analyses, conclusions, opinions, and statements expressed in the material are those of the authors, and not necessarily those of the Canadian Institute for Health Information. The authors thank Immigration, Refugees and Citizenship Canada for the use of their Permanent Resident Database. The authors thank IMS Brogan Inc. for use of their Drug Information Database.
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Funded by the Province of Ontario, Canada. This study was supported by the Institute for Clinical Evaluative Sciences, which is funded by an annual grant from the Ontario Ministry of Health and Long-Term Care. The opinions, results, and conclusions reported in this paper are those of the authors and are independent from the funding sources. No endorsement by the Institute for Clinical Evaluative Sciences or the Ontario Ministry of Health and Long-Term Care is intended or should be inferred. A.S.G. is currently supported by a Canadian Institutes for Health Research New Investigator Award and was previously supported by a Fellowship for Translational Health Research from the Physicians’ Services Incorporated Foundation, Toronto, Ontario while working on this study. A.S.G. has also received funding from the Canadian Respiratory Research Network.
Author Contributions: Study concept and design, A.S.G. and L.C.M. Acquisition of the data, A.S.G. Analysis and interpretation of the data, A.S.G., L.C.M., J.L., T.T., T.K., M.B.S., J.B., J.E., and S.D.A. Drafting of the manuscript, A.S.G. and L.C.M. Critical revision of the manuscript for important intellectual content, A.S.G., L.C.M., J.L., T.T., T.K., M.B.S., J.B., J.E., and S.D.A. Statistical analysis, L.C.M. and J.L. Study supervision, A.S.G. A.S.G., L.C.M., and J.L. had full access to all the data in the study and all authors had final responsibility for the decision to submit for publication.
This article has an online supplement, which is accessible from this issue's table of contents at www.atsjournals.org.
Originally Published in Press as DOI: 10.1164/rccm.201803-0592OC on June 11, 2018
Author disclosures are available with the text of this article at www.atsjournals.org.
