Abstract
Background:
Medicare home health could be leveraged to care for those near the end of life (EOL), especially for those who cannot access nor desire the Medicare hospice benefit. It is unknown what role home health currently has either preceding or as an alternative to hospice use.
Objective:
The aim of this study is to compare populations served and visit patterns of Medicare beneficiaries receiving home health/hospice/both near the EOL.
Design:
Nationally representative cohort study of National Health and Aging Trends Study (NHATS) respondents.
Setting/Subjects:
A total of 1,057 U.S. decedents in NHATS from 2012 to 2017 with linked Medicare claims were included in this study.
Measurements:
Measurements included the proportion of decedents who received home health/hospice/both/neither (yes/no) in the last six months of life (EOL) and mean number of visits by discipline (nurse/therapist [physical/occupational speech–language pathologist]/social worker/home health aide) per 30 eligible days at home for home health/hospice/both at the EOL. The primary independent variable was the clinician discipline providing services (nurse/therapist/social worker/aide).
Results:
In our sample, 19.9% received home health only, 25.8% hospice only, 18.8% both, and 35.6% neither at the EOL. These populations varied in their demographic, region, and clinical characteristics. Decedents who received home health only compared with hospice only were younger (44.1% over age 85 vs. 58.4%), members of a racially/ethnically diverse group (19.7% vs. 10.9%), and with less disability (37.2% required no assistance with activities of daily living vs. 22.7%), all p values <0.05. In adjusted models, those receiving home health versus hospice received similar numbers of visits per 30 days (average 5.4/30 vs. 6.6/30), while those receiving both received more visits (10.5/30). Home health provided more therapy visits, while hospice provided more social work and aide visits.
Conclusions:
More than one in three Medicare decedents nationwide received home health at the EOL. Home health has the potential to serve a population not reached by hospice and improve the quality of end-of-life care.
Keywords: end-of-life care, home health, hospice, workforce
Introduction
Most Americans report that they prefer to die at home, and the trend has moved toward more people dying at home and fewer in the hospital and nursing home setting.1–3 The Medicare hospice benefit provides home-based care that supports people being able to live their final days at home and is shown to improve the quality and experience of patients and families at end of life (EOL).4
Yet, the current hospice benefit has multiple shortcomings. Hospice is limited to those with a less than or equal to six-month prognosis who forego life-prolonging treatments for their terminal illness.5 This can create barriers to access for patients with ill-defined prognoses (e.g., dementia or other neurodegenerative diseases) or who wish to continue treatments not covered under the hospice benefit, such as chemotherapy or transfusions.6,7 Hospice is also underutilized by racial and ethnic groups, as well as those who live in rural regions.8,9
Medicare-funded home health offers intermittent home-based care through nurses, therapy, social work, and home health aides.10 Home health is available to people who demonstrate ongoing skilled care needs and is delivered in 30-day renewable episodes of care. It may be initiated either after an acute care stay or in the community, does not require a clear six-month prognosis or foregoing disease-directed therapy, and is widely available across every region of the United States.11,12
Multiple studies have demonstrated the role of home health in the care of those with serious illness, including those with cancer and dementia, but it is unknown how often home health agencies care for those near the EOL.11,13,14 This may be problematic because unlike hospice clinicians, home health clinicians are not routinely trained in palliative care principles, home health does not provide chaplaincy support, and home health does not provide bereavement support after a beneficiary dies.
On the other hand, home health may increase access to much-needed home-based support for those whose prognosis is uncertain or who do not wish to forego disease-directed therapy. In addition, hospice and home health agencies are often affiliated or jointly owned, thus creating opportunities to ease transitions near the EOL and provide palliative support upstream of hospice.15 Home health agencies may also be able to facilitate appropriate transition to hospice.16 While home health and hospice may not be delivered simultaneously, individuals may transition between these services.17
Despite the potential role of home health services in improving care near the EOL, and its organizational integration with hospice in many communities, no previous study has examined home health use relative to hospice care at the EOL.15 It is unclear who is served by each service (recipient characteristics), and the frequency with which each program's clinicians visit the patient's home (number of visits) as well as visits delivered by the different disciplines, such as nurses and therapists, needs to be studied. This is important given that bereaved family members have underscored the importance of visits and support at the EOL to high-quality end-of-life care.18
We therefore aimed to assess 1) the proportion and characteristics of older adults who use either Medicare home health or hospice, both, or neither; and 2) the frequency and types of visits received by older adults enrolled in home health and/or hospice in the last six months of life. We hypothesized that while home health is not specifically designed to meet end-of-life needs, it may provide substantial services at the EOL.
Methods
Data and study population
This is a retrospective cohort study of National Health and Aging Trends Study (NHATS) respondents who died between 2012 and 2017. NHATS is a nationally representative, longitudinal cohort study of older adults aged ≥65 years, which surveys respondents annually about their health and is linked to Medicare claims. We derived the date of death from the Medicare Beneficiary Summary File and NHATS surveys. We included decedents surveyed within 12 months before death and enrolled in traditional (fee-for-service) Medicare for 6 months before death.
We excluded decedents enrolled in Medicare Advantage as administrative data on home health use are not collected for these individuals and those residing in nursing homes or hospitals for the full duration of the last six months of life. We additionally excluded those without any eligible days at home in the last six months of life, defined as days not in a nursing home, hospital, or postacute care facility.
The Icahn School of Medicine at Mount Sinai Institutional Review Board approved this study. We followed the Strengthening the Reporting of Observational Studies in Epidemiology reporting guidelines.
Measures
Study respondents were categorized as receiving home health only, hospice only, both, or neither in the last six months of life. Visits at the EOL were defined as the total number of home health or hospice visits in the last six months of life per 30 eligible days at home (see above for definition of eligible days at home). Visits were further categorized using the home health and hospice Healthcare Common Procedure Coding System (HCPCS) by discipline type (nurse, therapist (physical/occupational/speech–language pathologist [SLP]), social worker, and home health aide). See the Supplementary Appendix for full details.
Although most hospice care is delivered in the home setting, hospice care can be provided across settings. As a sensitivity analysis, we excluded hospice care provided in nursing home settings and restricted the definition of hospice visits to those conducted in a private home or assisted living. See the Supplementary Appendix for details on this and visit coding.
We used sociodemographic, functional, and clinical measures from the NHATS survey before death to describe characteristics of service recipients. Characteristics included sex (male/female); age (65–74, 75–84, or 85+ years); race/ethnicity (White, non-Hispanic; Black, non-Hispanic; other, non-Hispanic; or Hispanic); education; income; residence (metropolitan/urban and regional area of United States); Medicaid status; living alone; homebound status (never/rarely leaves home; leaves home, but not by self; leaves home with assistance; or independent); functional disability (derived variable of the total number of activities of daily living (ADLs) receiving help [0, 1–2, or 3+] for eating, bathing, transferring, dressing, toileting, and walking indoors); presence of cancer, lung disease, heart disease, depression, anxiety, or dementia (yes/no); and hospitalization within the last six months (yes/no).
Statistical analyses
We applied the NHATS survey weights to identify the proportion of decedents receiving home health only, hospice only, both, or neither at the EOL. We then used standard descriptive statistics to summarize and compare sociodemographic and health characteristics of each decedent group. We compared the average total visits as well as visit by discipline type (nurse, therapist, social worker, or aide) among those who received home health and/or hospice (see the Supplementary Appendix for distribution of visits).
To compare if the mean number of visits was different between the groups that received home health and/or hospice, we used multinomial Poisson regression, adjusting for characteristics that might influence the need for visits, including age, sex, functional disability, homebound status, dementia, cancer, depression, and hospitalization in the last six months of life. All estimates were adjusted for survey design and weighting. All analyses were conducted using Stata statistical software, version 16.0 (StataCorp), with two-tailed p < 0.05 used to define statistical significance.
To account for decedents with zero visits and outliers in the number of visits, we performed a sensitivity analysis where we repeated the same analysis on the Poisson model, but with a negative binomial regression (Supplementary Appendix).
Results
We identified 1057 NHATS decedents enrolled in traditional Medicare 12 months before death: 20% (n = 233) received home health only, 26% (n = 276) received hospice only, 19% (n = 196) received both home health and hospice, and 36% (n = 352) received neither home health nor hospice. Among those receiving both home health and hospice, nearly all (>94%) first received home health and then transitioned to hospice.
The populations receiving each service were demographically distinct (Table 1). While sample sizes did not allow for a detailed analysis of race and ethnicity, a lower proportion of decedents who received home health only were White and non-Hispanic (80.3%) compared with those receiving hospice only (89.1%) or both home health and hospice (88.9%). Decedents who received home health only were younger (44.1% over age 85) than those who received hospice only (58.4% over age 85). They were also more likely to live in the Northeast and less likely to live in the West compared with those who received hospice only.
Table 1.
Characteristics Associated with Receipt of Home Health, Hospice, Neither, or Both in the Last Six Months of Life
| Home health only (n = 233) | Hospice only (n = 276) | Home health and hospicea (n = 196) | No home health or hospice (n = 352) | |
|---|---|---|---|---|
| Weighted proportion of sample | 19.9% | 25.8% | 18.8% | 35.6% |
| Female | 58.8% | 57.8% | 55.1% | 46.9% |
| Age, years | ||||
| 65–74 | 19.8% | 15.5%* | NR | 18.7% |
| 75–84 | 36.1% | 26.1%* | 34.1% | 41.6% |
| 85+ | 44.1% | 58.4%* | 55.0% | 39.7% |
| Race/ethnicity | ||||
| White, non-Hispanic | 80.3% | 89.1%* | 88.9%* | 85.4% |
| Black, non-Hispanic | NR | NR | NR | NR |
| Other, non-Hispanicb | NR | NR | NR | NR |
| Hispanic | NR | NR | NR | NR |
| High school or greater education | 72.1% | 74.6% | 73.0% | 72.7% |
| Annual income <$15,000 | 25.8% | 24.0% | 22.2% | 22.9% |
| Residing in a metropolitan region | 82.1% | 75.9% | 79.8% | 73.3% |
| Medicaid enrollment | 22.6% | 24.4% | 16.3% | 20.5% |
| Region | ||||
| Northeast | 27.1% | 11.8%* | 19.7% | 20.7% |
| Midwest | 19.3% | 26.4%* | 26.2% | 27.4% |
| South | 33.9% | 38.0% | 36.4% | 36.0% |
| West | 19.6% | 23.8% | 17.8% | 15.9% |
| Lives alone | 38.7% | 46.1% | 42.0% | 46.0% |
| Homebound status | ||||
| Never/rarely leaves the house | 26.0% | 42.1%* | 36.8%** | 20.7%* |
| Leaves home, but never by self | 18.6% | 15.1% | 23.1% | 10.1% |
| Leaves home, but needs help or has difficulty | 16.3% | 16.4% | 15.1% | 19.3% |
| Independent | 39.1% | 26.4% | 24.9% | 49.9% |
| Impaired ADLsc | ||||
| 0 | 37.2% | 22.7%* | 23.1%* | 44.3% |
| 1–2 | 29.9% | 35.2%* | 25.8%* | 27.6% |
| 3+ | 32.9% | 42.1%* | 51.1%* | 28.1% |
| Cancer | 32.9% | 46.8%** | 53.9% | 35.2% |
| Lung disease | 30.0% | 29.6% | 25.4% | 31.9% |
| Heart disease | 46.1% | 38.1% | 39.8% | 40.9% |
| Depression | 26.9% | 35.6% | 37.2% | 23.6% |
| Anxiety | 25.9% | 27.7% | 25.9% | 18.1% |
| Dementia | 34.4% | 53.8%** | 43.7%* | 31.0% |
| Hospitalized in the last six months of life | 89.0% | 65.1% | 82.4% | 70.6% |
| Mean eligible days at home in the last six months of lifed | 149.14 | 154.4 | 153.6 | 161.7 |
Data source: NHATS, 2011–2017. Proportions and means are adjusted for survey weighting and design.
As hospice and home health may not be concurrently provided, nearly all (>94%) of those receiving both services received home health, then hospice.
The other, non-Hispanic racial group includes American Indians, Alaska Natives, Asians, Native Hawaiians, and Pacific Islanders.
Impaired activities of daily living include receiving help with bathing, dressing, toileting, transferring, eating, and walking inside.
Eligible days at home are days not in a hospital or nursing facility.
p < 0.05 and **p < 0.01.
ADLs, activities of daily living; NR, not reportable as cell size is <25 individuals.
Those who received home health only reported lower rates of being homebound, less functional disability, and lower rates of cancer and dementia than those who received hospice only or both hospice and home health. However, they were more likely to be homebound than those who did not receive either home health or hospice and were more likely to be hospitalized in the last six months of life (89.0% hospitalized) compared with those in hospice only (65.1%) or with neither home health nor hospice (70.6%).
Visit type and frequency varied by type of service received. While nearly all received nursing visits, 73.1% in home health only and 70.7% in both home health and hospice received a physical/occupational/SLP therapy visit, while <5% in hospice only received a visit (Table 2). Compared with those who received home health only, those who received hospice only or both services were more likely to have a social work visit (14.8% in home health only, 79.2% in hospice only, and 87.1% in both) and an aide visit (19.4% in home health only, 70.5% in hospice only, and 74.5% in both).
Table 2.
Proportion of Decedents Receiving Non-Nursing Visits Through Home Health, Hospice, or Both at the End of Lifea
| Home health only | Hospice only | Home health and hospiceb | |
|---|---|---|---|
| Therapist (PT/OT/SLP) | 73.1% | NR | 70.7% |
| Social worker | 14.8% | 79.2% | 87.1% |
| Home health or hospice aide | 19.4% | 70.5% | 74.5% |
Data source: NHATS, 2011–2017. Proportions are adjusted for survey weighting and design.
We do not demonstrate the proportion of decedents receiving nursing visits for each service as this was all or nearly the entire population for hospice and both home health and hospice. For those in home health only, 91.3% received a nursing visit.
As hospice and home health may not be concurrently provided, nearly all (>94%) of those receiving both services received home health, then hospice.
OT, occupational therapy; PT, physical therapy; SLP, speech–language pathologist.
In examining the mean number of visits at any time in the last six months of life (Fig. 1), those who received home health only did not differ from those who received hospice only in the frequency of visits (5.4 visits/30 days vs. 6.6 visits/30 days), but both groups received fewer visits than those who received both services (10.5 visits/30 days). While decedents in home health were enrolled for a longer period in the program (64.8 vs. 46.5 days in the last six months), those who received both were enrolled for a mean of 83.8 days in total.
FIG. 1.
Visits per 30 days at home in the last six months of life, total and by visit type, among those receiving home health, hospice, or both. Data source: NHATS, 2011–2017. Days at home is defined as days not in a hospital or nursing facility in the last six months of life. As hospice and home health may not be concurrently provided, nearly all (>94%) of those receiving both home health and hospice received home health, then hospice. Proportions are adjusted for survey weighting and design. Social work visits are not displayed, please see the Supplementary Appendix.
In the Poisson multivariable regression model (Table 3), adjusting for basic demographics and illness confirmed the bivariate comparison: those receiving home health only and hospice only did not differ in total visits, but those receiving both services had more visits. Compared with those in home health only (reference group), those receiving hospice only or both received more social work and aide visits, although those in home health only received more therapy visits than those in hospice only. In the sensitivity analysis, using negative binomial regression, results did not differ significantly.
Table 3.
Poisson Model Testing the Association of Receipt of Home Health Only, Hospice Only, or Both with Total Visits in the Last Six Months of Life
| Home health only | Hospice only | Home health and hospicea | |
|---|---|---|---|
| All visits | Reference | 1.03 (0.79–1.33) | 1.72 (1.26–2.36)** |
| Nurse visits | Reference | 0.96 (0.70–1.32) | 1.67 (1.19–2.34)** |
| Therapy (PT/OT/SLP) visits | Reference | 0.01 (0.00–0.04)** | 0.94 (0.69–1.28) |
| Social work visits | Reference | 11.82 (6.87–20.33)** | 10.95 (6.21–19.32)** |
| Aide visits | Reference | 2.66 (1.47–4.81)** | 3.30 (1.55–7.07)** |
Unique Poisson regression models predicted each visit type. Each model additionally included covariates for age; gender; number of activities of daily living (eating, bathing, transferring, dressing, toileting, and walking indoors) for which the decedent received help; homebound status (rarely/never leaving home; leaving home sometimes, but with difficulty or help; or independent/not homebound); probable dementia, cancer, or depression; and hospitalization in the last six months of life.
As hospice and home health may not be concurrently provided, nearly all (>94%) of those receiving both home health and hospice received home health, then hospice. Models account for survey design and sampling approach.
p < 0.05 and **p < 0.01.
As an additional sensitivity test, we limited our measure of hospice to those visits occurring in the home. We did not find substantial differences in the populations receiving home health, hospice, both, or neither or the visit frequency using this definition (see the Supplementary Appendix for details).
Discussion
The Medicare home health and hospice benefit are both home-based services available to Medicare beneficiaries, but home health is not designed for end-of-life care. Therefore, it is notable that we found that more than one in three Medicare decedents nationwide received home health in the last six months of life, with half of them only receiving home health without additional hospice support.
Our study found that home health provided a similar number of visits as hospice in the last six months of life, but home health offered more physical/occupational/SLP therapist visits, and hospice provided a higher frequency of social work and aide visits in the last six months of life. While home health provides care for Medicare beneficiaries with similar medical profiles to hospice, there were some notable differences, including younger age, being a member of a racially/ethnically diverse group, and lower levels of disability.
This novel study provides valuable insight into the characteristics of patients who receive home health versus hospice and which clinicians, by discipline, are in the home. Variations in care depend on the available home-based model.
Our results highlight that home health not only plays a large role in the care of those near the EOL but also may serve a population not reached by hospice: those from racial and ethnic minority groups and younger decedents. Presumably, these populations care little about the name of the benefit, but prefer services and supports that are aligned with their goals of care (e.g., do not require them to discontinue curative treatments and provide more rehabilitative therapies to support their function). Alternatively, these differences may be the result of lower access to hospice due to region or illness differences (i.e., not having a cancer with a clear less than six-month prognosis).19–21
Despite the frequent engagement of home health in care for individuals near the EOL, many agencies and home health staff may not be adequately prepared to care for this population. Home health staff receive limited or often no training in end-of-life issues, much less palliative care principles, such as communication around goals of care or symptom management.22 Not only does lack of training and employer support in encountering end-of-life issues lead to potentially worse outcomes for patients but it also leads to grief avoidance (avoidance of thinking and discussing the deceased) and detachment in clinicians.22–24
Emotional exhaustion and detachment are concerning as they can affect a clinician's ability to provide compassionate care.23 Some home health agencies have made strides in improving palliative care delivery through integrating symptom management skills and advance care planning training and education for their staff, but much more needs to be done in this area to help prepare home health clinicians.25–27
Home health and hospice not only serve distinct populations near the EOL but also provide different services. These two service options may create the opportunity to measure the impact of these service blends on patient and family experiences and outcomes. For example, we identified few therapy visits provided by hospice, while this is a mainstay of home health. While hospice is required to provide therapy services through conditions of participation, high financial costs and staff shortages may prevent patients from accessing services. It is possible that some of this therapy also represents nonbeneficial attempts to rehabilitate patients near the EOL.
On the other hand, functional independence is frequently cited by individuals at the EOL as an important goal,28 and studies of physical therapy for those at the EOL have found improvements in function, musculoskeletal pain, mood, and fatigue.29 Speech therapy may help those with diseases such as Parkinson's, which cause dysphagia at the EOL,30 and occupational therapy may improve the ability to engage with ADLs, even as the ability to independently perform them diminishes.31
Those receiving both home health and hospice received the greatest total number of visits and possibly received the maximum amount of support in the home. Further research needs to understand the impact and drivers of effective transitions between home health and hospice to support patients along the continuum of end-of-life care.
Our study has limitations. First, while this study offers valuable insight into who is providing health care services in the home at the EOL, we did not examine the quality of care received by patients at the EOL through home health or hospice using other measures. Further work would include measuring care patterns, transitions, and concordance with goals of care; linking to Consumer Assessment of Healthcare Providers and Systems surveys to assess satisfaction; and direct interviews with patients and families to understand their experience receiving home-based services, particularly both home health and hospice services.
Second, our cohort is limited to 2012–2017 and thus recent changes in practice and policies might not be reflected in our analysis.32 For example, in January 2020, the Patient-Driven Groupings Model (PDGM) went into effect, which disincentivizes physical/occupational/SLP therapy visits in home health.33 We can assume that the number of therapy visits for home health may decrease at the EOL and subsequently, less support may be available for this group of patients and families. The impact of PDGM on home health use and any additional changes in practice and policies (e.g., impact of the COVID-19 pandemic) at the EOL will need to be observed.
Third, these results apply only to Medicare fee-for-service beneficiaries and are not generalizable to other insured groups. Further work should examine the role of home- and community-based services provided by Medicare Advantage and state Medicaid programs near the EOL.
Last, further investigation into racial and ethnic differences in home-based service use and the role of health care disparities given our small sample size is needed. While our finding of lower use of hospice services among non-White populations is consistent with prior literature,8,9 this raises concerns about structural racism in both hospice policy and delivery of hospice care, which require further investigation.
We found that many older adults who do not receive hospice services receive home health at the EOL and many receive both. While home health is not an alternative to hospice, home health is an option for many for whom the values and principles are discordant with comfort-focused care. This raises many questions about the quality of care for those receiving home health, but not hospice, where staff are not trained to provide palliative care, and provides potential opportunities to improve integration of home health and hospice care.
As interest in home-based models of palliative care grows, capitalizing on the existing models and workforce should be leveraged to support goal-aligned care for older adults dying at home and their caregivers.
Supplementary Material
Authors' Contributions
Study concept and design were performed by A.O., L.J.H., C.S.R., K.A.O., A.S.K., and C.K.A. Acquisition of data was performed by A.S.K. and C.K.A. Analysis and interpretation of data were performed by A.O., L.J.H., C.S.R., K.A.O., A.S.K., S.R., and C.K.A. Preparation and editing of the article were performed by A.O., L.J. H., C.S.R., K.A.O., A.S.K., and C.K.A.
Disclaimer
The sponsor played no role in the study design, methods, recruitment, data collection, analysis, or preparation of this article.
Funding Information
The NHATS is sponsored by the National Institute on Aging (grant no. NIA U01AG032947) and is conducted at the Johns Hopkins University. The authors received funding from the following sources: VA Office of Academic Affiliations (Oh, AF-3Q-09-2019-C), National Center for Advancing Translational Sciences (Hunt, KL2TR001870), National Palliative Care Research Center Career Development Award (Hunt), and the National Institute on Aging (Ritchie and Ornstein, P01AG066605; Kelley, R01AG054540 and K24AG062785; and Ankuda, K76AG064427).
Author Disclosure Statement
No competing financial interests exist.
Supplementary Material
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