Abstract and Introduction
Abstract
Background: The Medicare Hospice Benefit increasingly serves people dying with dementia. We sought to understand characteristics, hospice use patterns, and last-month-of-life care quality ratings among hospice enrollees with dementia coexisting with another terminal illness as compared to enrollees with a principal hospice diagnosis of dementia, and enrollees with no dementia.
Methods: We conducted a pooled cross-sectional study among decedent Medicare beneficiaries age 70+ using longitudinal data from the National Health and Aging Trends Study (NHATS) (last interview before death; after-death proxy interview) linked to Medicare hospice claims (2011–2017). We used unadjusted and adjusted regression analyses to compare characteristics of hospice enrollees with coexisting dementia to two groups: (1) enrollees with a principal dementia diagnosis, and (2) enrollees with no dementia.
Results: Among 1105 decedent hospice enrollees age 70+, 40% had coexisting dementia, 16% had a principal diagnosis of dementia, and 44% had no dementia. In adjusted analyses, enrollees with coexisting dementia had high rates of needing help with 3–6 activities of daily living, similar to enrollees with principal dementia (62% vs. 67%). Enrollees with coexisting dementia had high clinical needs, similar to those with no dementia, for example, 63% versus 61% had bothersome pain. Care quality was worse for enrollees with coexisting dementia versus principal dementia (e.g., 61% vs. 79% had anxiety/sadness managed) and similar to those with no dementia. Enrollees with coexisting dementia had similar hospice use patterns as those with principal diagnoses and higher rates of problematic use patterns compared to those with no dementia (e.g., 16% vs. 10% live disenrollment, p = 0.004).
Conclusions: People with coexisting dementia have functional needs comparable to enrollees with principal diagnoses of dementia, and clinical needs comparable to enrollees with no dementia. Changes to hospice care models and policy may be needed to ensure appropriate dementia care.
Introduction
Alzheimer's disease and related dementia syndromes (ADRD – henceforth referred to as dementia) are often terminal diagnoses affecting 5.8 million people in the United States.[1] Hospice is a model of care that aims to provide person-centered care and optimize quality of life for people who are dying. Yet the Medicare Hospice Benefit, which provides care to 52% of decedents in the United States in 2019,[2] was not designed for people with dementia (PWD) and their care communities.[3] Common needs among PWD include help managing behavioral symptoms of dementia, pain, breathing problems, disability and falls, and caregiver burden;[3–6] these could be insufficiently addressed if hospice processes developed for cancer are followed. Most research on end-of-life care for PWD has focused on hospice recipients who have dementia as principal diagnosis and indication for hospice care. When people are dying from advanced dementia, they are eligible for hospice when bedbound, incontinent, and unable to speak intelligibly;[7] enrollees with principal diagnoses of dementia also experience burdensome symptoms like pain and breathlessness.[8,9] Yet older persons at the end of life frequently have many coexisting conditions. Dementia may coexist with another terminal diagnosis that precipitates hospice care.[10]
Hospice employees are required to distinguish between principal and coexisting dementia at admission because criteria for hospice eligibility are pinned to specific isolated terminal conditions. Regulatory pressures that influence hospice clinician's choice and documentation of both principal and coexisting diagnoses have also changed over time.[11] Examples include clarifying the allowable subset of ICD-9 diagnoses designating dementia as primary terminal hospice diagnosis, discontinuing other primary diagnoses commonly used for PWD such as 'debility' and 'failure to thrive', and implementing ICD-10 coding with greater dementia specificity.[11] As such, it can be difficult to disaggregate hospice subpopulations with coexisting conditions and their distinct needs. Beyond administrative coding, diagnoses also inform creation of care plans. Lack of recognition of coexisting dementia among enrollees could result in needs being unmet or mismanaged, for example, if coexisting dementia is misdiagnosed and treated as delirium.
In 1990, 7% of hospice patients were estimated to have dementia in addition to another terminal illness.[12] Since then, our understanding of what is and is not dementia, and our diagnostic standards, have evolved. A study using hospice Medicare claims data from 2013 estimated that 45% of all hospice recipients had a dementia diagnosis (either as principal diagnosis or coexisting condition).[13] A more recent study using the Health and Retirement Study, which has robust methods of dementia ascertainment, found that 30% of decedent hospice enrollees had dementia coexisting with another terminal illness.[10] Having coexisting dementia was associated with increased odds of a long hospice enrollment (longer than 6 months) and live disenrollment. However, these data sources do not allow for assessment of potential unmet needs for functional and symptom management, behavioral symptoms, and caregiver involvement, nor measures of end-of-life care quality. Understanding the prevalence and specific needs of older hospice enrollees who are either dying from advanced dementia or with coexisting dementia is an essential step toward ensuring care models and policies adequately address those needs.
We used the National Health and Aging Trends Study (NHATS) linked to Medicare claims to (1) estimate the prevalence of dementia among hospice recipients, and (2) describe characteristics, hospice use patterns, and proxy ratings of last month of life care quality for hospice enrollees with coexisting dementia compared to two groups: older adults with a principal hospice diagnosis of dementia, or enrollees with no dementia. Our rationale for including two comparator groups was to inform efforts to address this otherwise-invisible population. Currently, enrollees with coexisting dementia are commonly captured in non-dementia clinical pathways and research studies. However, if those with coexisting dementia more closely resemble those with principal diagnoses of dementia – and needs are distinct from those with no dementia – efforts will be needed to identify the population through screening programs and documentation of secondary hospice diagnoses as well as to ensure that needs are adequately addressed.
J Am Geriatr Soc. 2023;71(3):785-798. © 2023 Blackwell Publishing
