Abstract
Abstract
Objective:
To describe prevalence and content of AD documentation among NH residents by dementia stage.
Background:
The prevalence of advance directives (ADs) among nursing home (NH) residents with mild, moderate, and advanced dementia remains unclear.
Methods:
Population-based, cross-sectional study of all licensed NHs in five U.S. states. Subjects included all long-stay (>90 day) NH residents with dementia, aged ≥65 years, and a Cognitive Performance Scale (CPS) score ≥1 from the 2007 to 2008 Minimum Data Set 2.0 (n = 180,621). Dementia severity was classified as follows: mild (CPS 1–2), moderate (CPS 3–4), and advanced (CPS 5–6).
Measurements:
ADs were defined as the presence of a living will, do-not-resuscitate order, do-not-hospitalize order, medication restriction, or feeding restriction).
Results:
Overall, 59% of residents had any AD and 17% had a living will. Prevalence of any AD increased by dementia severity: mild (51.2%), moderate (58.2%), and advanced (61.5%) (p < 0.001). In adjusted analysis, resident characteristics associated with any AD documentation included older age, female gender, being white, and having more severe dementia. Having a living will was associated with higher education (≥high school graduate vs. some high school or less) and being married.
Discussion:
While dementia severity was associated with greater likelihood of having documented any AD, almost 4 in 10 residents with dementia lacked any AD. Effective outreach may focus efforts on subgroups with lower odds of any AD or living wills, including non-white, less educated, and unmarried NH residents. A greater understanding of how such factors impact care planning will help to address barriers to patient-centered care for this population.
Background
A
Currently, there are over 1.3 million residents of long-term care NH facilities in the United States, almost half of whom have a diagnosis of Alzheimer's disease or other dementia. 1 As this population continues to grow,2–4 it is increasingly important to understand and routinely document patient preferences regarding medical decision making and end-of-life care planning. Among residents with dementia, the subgroup of those with advanced dementia is at the highest risk for episodes of acute illness leading to hospitalization,5,6 and is also the least able to articulate medical wishes. It is therefore important to capture goals of care information for patients with dementia while their ability to communicate is intact, which is typically preserved in early-stage disease.
Since the passage of the Patient Self-Determination Act of 1990, the prevalence and use of ADs in the general NH population have increased.7,8 However, there is significant variation in estimates of the number of NH residents with ADs,7,9 and the prevalence and variation in ADs by stage of dementia remain unclear. Documenting ADs among long-stay nursing facility residents with dementia carries particular importance as nursing facilities are the site of death for the majority of patients with dementia. 10
Available studies about AD documentation among NH residents with dementia are small, 11 do not examine AD by dementia stage,3,12,13 and do not focus on long-stay residents.3,12–15 Furthermore, many prior studies focused solely on the presence of do-not-resuscitate (DNR) and do-not-hospitalize (DNH) orders, but did not describe other important ADs such as restrictions on feeding and medication use.
Given the growing reliance on NH care for dementia patients, and increasing support for initiating advance care planning discussions early in the dementia illness trajectory, it is timely to document what is known about ADs for NH residents with dementia by level of severity. This report is also timely, given the recent changes to the physician fee schedule in the United States under Medicare Part B allowing for Medicare reimbursement of 30-minute advance care planning discussions as of January 1, 2016. 16 Therefore, we sought to describe ADs by stage of dementia in the nursing facility population from a large population-based sample of all licensed NH facilities in five U.S. states. We describe resident factors associated with having ADs in this report and hypothesize that later stages of dementia will have greater levels of ADs.
Methods
Data source and population
We used Minimum Data Set (MDS) 2.0 data from January 1, 2007, to December 31, 2008, to assemble a cohort of NH residents with dementia from all licensed facilities (N = 3371) in five states (Minnesota, Massachusetts, Pennsylvania, California, and Florida). The MDS is a standardized, clinically based instrument used in the U.S. NHs to assess resident condition for clinical and reimbursement purposes. While Centers for Medicare and Medicaid Services (CMS) introduced a newer version of the MDS on October 1, 2010, our data have relevance for large-scale descriptive epidemiology because the newer version of the MDS (v 3.0) does not capture any data on ADs. The MDS collects information on the demographic, functional, medical, psychological, and cognitive status of residents. 17 A nurse interviews the resident, consults the medical record, and talks with other caregivers to collect information on the resident's care, cognitive and physical functioning, and behavior to complete the MDS assessment. The CMS require that each certified facility conduct an MDS assessment of all residents on admission, quarterly thereafter, and with significant changes in clinical status.
We identified all residents with dementia using Section I of the MDS 2.0, with associated Part D file and a length of stay >90 days (n = 226,936). We used the Cognitive Performance Scale (CPS) score to classify dementia severity. CPS scores correspond to levels of impairment: 1 (borderline intact); 2 (mild impairment); 3 (moderate impairment); 4 (moderately severe impairment); 5 (severe impairment); and 6 (very severe impairment with eating problems). 18 For this study, we limited the sample to those with a CPS ≥1 for a final sample size of 180,621, and classified residents with CPS 1–2 as having mild dementia, those with CPS 3–4 as having moderate dementia, and those with CPS 5–6 as having advanced dementia.
Study variables
Advance directives
ADs were defined as the presence of a living will, DNR order, DNH order, medication restriction (i.e., resident or responsible party does not wish the resident to receive life-sustaining medications such as antibiotics or chemotherapy), or feeding restrictions (i.e., resident or responsible party does not wish the resident to be fed by artificial means if unable to be nourished orally). For analysis, we created three outcome variables: living will only; any other AD (not including living will); and any AD.
Other variables
Resident characteristics
Resident characteristics were obtained from the baseline MDS assessment and included the following: sociodemographics (age; sex; race/ethnicity [Hispanic; white, not Hispanic; black, not Hispanic; Asian/Pacific Islander; American Indian/Alaskan Native]; marital status [married; single (widowed, separated, divorced, never married)]; education [some high school or less; high school graduate or greater]); whether Medicaid was the primary payer; enrollment in hospice; residence in a special care unit for dementia; and geographic location of the NH (California, Florida, Massachusetts, Minnesota, and Pennsylvania).
Data analyses
We used descriptive statistics, including χ2 tests for categorical variables, to describe resident characteristics and the proportion of residents having any AD, a living will only, and any other AD, and to characterize the proportion of residents with mild, moderate, and advanced dementia who have specific types of ADs (i.e., DNR; living will; do not hospitalize order; feeding restrictions; and medication restrictions).
We used logistic regression to compare residents with ADs to residents without any ADs. We stratified analyses by whether residents had a living will only, other ADs only, and any AD, because living wills require the resident to participate while other ADs are typically decided by a responsible party (i.e., not the resident). Unadjusted analysis was followed by adjusted logistic regression that included all factors associated with outcomes at the p < 0.20 level in unadjusted analysis. We used complete case analysis when values were missing for key predictor variables. All analyses were performed using STATA 10.1 (StataCorp, College Station, TX). The Institutional Review Board of the University of Massachusetts Medical School approved this study.
Results
The study population included 180,621 residents from five states; 72.7% were female and 19.6% were nonwhite. Overall, 22.1% had mild dementia, 53.3% had moderate dementia, and 24.6% had advanced dementia (Table 1).
Any advance directive defined as living will or other advance directives (DNR, DNH, feeding restrictions, medication restrictions)
DNR, do-not-resuscitate; DNH, do-not-hospitalize.
For the entire population of residents with dementia, 57.5% (n = 103,772) had documentation of any AD, 17.6% (n = 31,786) had a living will, and 52.1% (n = 94,174) had other ADs. Dementia severity was associated with the documentation of any AD and other ADs, but not living wills (Table 1). Specifically, residents with mild dementia had the lowest prevalence of any AD at 51.2%, moderate dementia 58.2%, and advanced dementia 61.5% (p < 0.001); the prevalence of living will ranged from 17.4% to 17.7%, with no difference by dementia severity (p = 0.273). The prevalence of each specific type of AD order, not including living wills, increased with greater severity of dementia (Table 2).
CPS, Cognitive Performance Scale.
There was significant geographic variation with respect to AD documentation, with the prevalence of any AD ranging from 49% for residents in Florida nursing facilities to 76% in Minnesota. Living wills also varied by state, from a low of 1.2% in California and 3.8% in Massachusetts to a high of 33.2% in Pennsylvania.
In adjusted analysis, resident characteristics, including older age, being female, and white, were associated with having each AD outcome (living will only; any other AD (not including living will); and any AD) (Table 3). Having moderate and advanced dementia was uniquely and strongly associated with having other ADs (i.e., ADs that did not include living wills) (adjusted odds ratio [OR] 1.34, 95% confidence interval [CI] 1.31, 1.38; adjusted OR 1.59, 95% CI 1.54, 1.65, respectively). Having a living will was uniquely associated with having higher education (adjusted OR 1.30; 95% CI 1.25, 1.35) and being married (adjusted OR 1.09; 95% CI 1.05, 1.14). Geographic differences persisted in adjusted analysis, with all states having greater odds of any AD documentation compared to Florida, and residents of California, Massachusetts, and Minnesota having lower odds for having a living will than Florida (Table 3).
Any advance directive defined as living will or other advance directives (DNR, DNH, feeding restrictions, medication restrictions).
MN, Minnesota; MA, Massachusetts; PA, Pennsylvania; CA, California; FL, Florida.
Discussion
No prior study has described prevalence of ADs among NH residents by dementia severity. In this large, population-based, study sample in the NH setting, we found that living wills were less common than other ADs that may involve substituted judgment from a proxy decision maker (i.e., DNR and DNH orders, feeding restrictions, and medication restrictions). Dementia severity was associated with greater likelihood of such ADs, but not living wills.
Overall, we found that only 58% of residents with dementia had any AD. This is a cause for concern since the risk for acute conditions requiring more aggressive care, such as infections, increases as dementia progresses to more severe disease stages. 6 For example, in the last 3 months of life, the likelihood of residents with advanced dementia undergoing at least one burdensome intervention such as a hospitalization, emergency room visit, parenteral therapy, or tube feeding is around 40%. 6 Without an AD, there is increased burden on loved ones to make decisions on behalf of the resident, and increased risk that the decisions made may not be in keeping with the resident's wishes. Assuming that substitute decision makers and healthcare teams honor the wishes expressed by residents, ADs can reduce the risk of undue and burdensome care in this population.
Fewer than one in five residents in our population had a living will. Since living wills are initiated by individuals themselves, typically before developing serious illness, it is not surprising that the prevalence of living wills did not increase with increasing dementia severity (i.e., when they lacked the cognitive ability to initiate or participate in the writing of a living will). This suggests that <20% of NH residents have documented evidence of conversations related to ADs early in their course of dementia. Interestingly, living wills were more prevalent among residents who were married and had greater education. Our findings are consistent with other studies describing that ADs are more likely in advanced dementia residents who are better educated and married. 11 This suggests an opportunity for increasing the awareness of early advance care planning and ADs among less educated individuals.
We found evidence of significant difference in the prevalence of any AD by increasing age, female sex, race/ethnicity, and geography. These findings are consistent with other studies showing variation in AD among advance dementia residents by race, 11 in the general population by older age, sex, race/ethnicity, and education, 19 and in geographic variation in the care of seriously ill adults. 20 Geographic variation in living wills is not surprising given that there are states that do not officially recognize living wills, including Massachusetts. Our findings suggest that facilities and healthcare providers may have the greatest impact by improving advance care planning outreach to subgroups of residents who have consistently shown lower likelihood of AD completion—NH residents who are less-educated, nonwhite, or unmarried.
This is a particularly important time to refocus attention on advance care planning, with the January 1, 2016, amendment of the Physician Fee Schedule and Medicare's introduction of Current Procedural Terminology (CPT) Code 99497 for advance care planning. This code allows for recognition and billing of the first 30 minutes of advance care planning discussion, face-to-face with the patient, family member(s), and/or surrogates with an additional 30 minutes available through CPT Code 99498. 21 As stated in the CY 2016 Physician Fee Schedule (PFS) final rule (80 Fed. Reg. 70956), advance care planning (ACP) services may be appropriately furnished in a variety of settings depending on the needs and condition of the beneficiary. While there are no place of service limitations on the ACP codes, theoretically allowing the use of these codes for services rendered in the nursing facility, there is not yet empiric evidence that this is being used. Furthermore, there are nuances of NH practice that may actually make implementation of such a CPT code challenging and distinctly different from an outpatient/ambulatory setting. For example, factors that may constrain use in the NH include the limited time clinicians spend on site,22,23 the increasing use of the “Physician-Order for Life Sustaining Treatment” paradigm, 24 and the fact that telephone conversations with surrogates do not meet the billing criteria (when much of the family communication from NH clinicians and family occurs by phone and not face-to-face). Going forward, NH facilities need to explore and develop models for increasing the frequency of advance care planning discussions, particularly among residents with dementia who still have cognitive ability to articulate their preference.
Our findings must be considered in the context of the study limitations. First, we used data from 2007 because the newer version of the MDS (v 3.0) does not capture any data on ADs. Given the recent surge in interest in advance care planning, it is possible that available data may be underestimating AD levels in the United States. However, we believe the age of the data does not substantially mitigate the importance of our findings, particularly given the recent continued evidence of concerning rates of hospitalizations and burdensome interventions in this population.5,6
We also note that our outcome measure describes ADs with restrictions for care, including DNR, DNH, and limitations on feeding and medications. It is possible that some NH residents without an AD engaged in advance care planning conversations with their providers and elected to accept all resuscitative efforts; our current data cannot differentiate between residents who actively decided against an AD and those for whom the lack of AD represents an omission of advance care planning. Finally, our data do not capture information regarding the choice of substitute decision makers in this population. However, since designation of a surrogate decision maker is a customary part of the NH admission process, we do not believe that this detracts from our findings.
Conclusions
There is room for interventions to increase the documentation of ADs in NH residents with dementia. More importantly, there is a need to reach these residents at earlier stages of their cognitive impairment, while they are still able to state their preferences. Furthermore, when ADs are documented, it remains important for facilities and clinicians to honor ADs. The Medicare benefit may provide one possible strategy for increasing advance care planning discussion in the NH, but further work needs to be done to understand how to address the particular challenges of billing for such conversations in this setting. In the end, we need to better understand how to reach populations that have traditionally had lower levels of AD completion.
Footnotes
Acknowledgments
The authors acknowledge the contributions of Daniel Peterson, MA, who assisted with data analysis. Dr. J.T. was supported by a Sojourns Scholar Leadership Award from the Cambia Health Foundation.
Author Disclosure Statement
No competing financial interests exist.
