Transitions between skilled home health and hospice for persons living with dementia: a systematic review of literature

Introduction

Background

In the United States (US), nearly one third of skilled home health (HH) patients and nearly one half of hospice patients have diagnoses of Alzheimer’s disease and related dementias (ADRD) (1). Skilled HH in the US is defined as physician-directed skilled care provided by the disciplines of nursing, social work, and/or physical, occupational, or speech therapy to homebound patients, with a focus on rehabilitation, while hospice is defined as comfort-oriented care provided by an interprofessional team to patients with prognoses of 6 months or fewer who choose to discontinue curative treatments (2,3). In the US, 98% of hospice care occurs in the home (4). ADRD are prevalent in both the skilled HH and hospice settings in the US.

ADRD are characterized by chronic progressive global cognitive impairment (5,6). The term, cognitive impairment, has been used as a measure of dementia; therefore, both terms are used in the present review (7,8). Dementia disorders affect people slowly and insidiously, and irreparable brain damage may begin to occur up to twenty years before any symptoms are identified (6). Despite the 6-month prognosis criterion for hospice, determining how long a person living with dementia (PLWD) will survive is difficult (8). Prognosis may be informed by functional status, physical symptoms, poor nutrition, and other criteria (9). Long trajectories of decline toward death for PLWD are evidenced by high, sustained functional impairment in the last 4 years of life, and PLWD have the same predicted functional status scores at 17 months before death as individuals without dementia at 6 months before death (10). However, they receive less healthcare in all settings than those without dementia or cognitive impairment (11,12).

During their long trajectory of decline, PLWD are more likely to be cared for by family care partners. For example, approximately 85% of Americans with probable dementia reside with family, friends, or in community adult assisted living facilities, while 15% live in nursing facilities (13). Family care partners of PLWD are three times more likely to experience caregiver burden in the PLWD’s last year of life compared to caregivers of people dying from other diseases (14). PLWD and their care partners are at higher risk for poor outcomes related to care transitions—defined as movements between health care services or locations of care—than their counterparts without dementia or cognitive impairment (15). Services for PLWD should be flexible, tailored, and equitable, but care systems are often fragmented and difficult to navigate (16).

Care transitions for all patients increase risks of medical errors, disruptions in continuity of care, avoidable hospital admissions, and preventable adverse events; however, PLWD have the added risk of cognitive impairment, while their care partners manage and negotiate care with multiple providers, manage illness, and cope with psychosocial issues (17-19). PLWDs are at risk for multiple care transitions during their long trajectory of decline. For example, during the 6-month period post-diagnosis of Alzheimer’s disease, the average numbers of patient transitions between care settings have been found to be 2.8 originating from an inpatient setting, 2.4 from a skilled nursing facility, 0.3 from a hospice setting, and 0.7 from a home or outpatient setting (20). The overall cost burden during this period has been high for individuals diagnosed with Alzheimer’s disease in a non-ambulatory setting (mean $41,468), while those diagnosed in ambulatory settings incurred only $12,597 in costs during the same period, suggesting that PLWD cared for in home and outpatient settings are better managed and cost the healthcare system less than PLWD in institutional settings; and that the earlier PLWD are managed, the longer they can avoid intensive healthcare resource use (20).

For PLWD, a transition may involve moving from one healthcare service to another, or it may involve being discharged from a healthcare service into the care of their informal care partners. In the present review, a care transition for PLWD includes being discharged from or admitted to a health service; or being transferred from one health service to another. Discharges from skilled HH to community or from hospice to community are also considered care transitions for the purposes of this review because care partners of PLWD must find alternate services to support their caregiving (21).

Involvement of mid-level practitioners in care transitions may affect outcomes for PLWD. For example, in both nursing home- and community-dwelling Medicare beneficiaries with ADRD, adjusted hospitalization rates were lower and hospice rates were higher for individuals with higher proportions of involvement by a nurse practitioner or physician’s assistant during their final 9 months of life (22). PLWD are at risk for multiple care transitions, and support is needed to optimize outcomes.

Home-based care is an umbrella term used to describe all care provided in the home, and it is growing among older adults (1). For example, in the US, some type of home-based care has been accessed by 44.4% of PLWD, who are more likely to be female, non-Hispanic/Latino, and residing in metropolitan areas and in residential facilities (23). Growing diversity in the US may affect the demographic make-up of home-based care in the future (24). Home-based care, which can include skilled HH and hospice, is a growing setting with benefits for PLWD. For example, benefits include familiar environments and routines, which have been shown to decrease neuropsychiatric symptoms (NPS) and improve health outcomes for PLWD (25-27). Further, in post-hospitalization, many patients prefer to rehabilitate in skilled HH versus an inpatient setting because services are provided in the person’s home (28). As well, skilled HH is gaining attention as a site of long-term care with potential for palliative care and transitions to hospice (29-31).

The decision to pursue hospice care is like no other healthcare decision because it involves considering existential issues, adapting to new health care services, and coping with a shift in goals of care from cure to comfort (32-34). Hospice has been found to benefit PLWD since it is associated with improved symptom management and care partner satisfaction, decreased care partner burden, preventing hospitalization, and discontinuing unnecessary medications (35). Approximately one-half of all US Medicare hospice beneficiaries have primary or co-morbid diagnoses of ADRD (5). Such a prevalence exists despite the Center for Medicare and Medicaid Services’ (CMS) 2016 implementation of a 2-tier payment system reducing reimbursement for hospice stays longer than 60 days, which has been associated with reductions in the total number of hospice patients with ADRD (36,37). Evidence supports that ADRD diagnoses are prevalent in hospice, that hospice care benefits PLWD and their care partners, but that PLWD are at higher risk for live discharge than their counterparts without ADRD (5,38-43). Live discharge from hospice for PLWD and their care partners has been described as distressing and confusing; associated with numerous losses; and referred to disparagingly as being expelled from hospice (21). Once discharged from hospice, PLWD may transition to HH or other services which may disrupt continuity of care and bring risks of poor outcomes. In the US, the number of transitions between skilled HH and hospice is unlimited by policy (2,3).

Rationale and knowledge gap

Previous literature has shown that PLWD are at risk for multiple care transitions, associated with poor outcomes (17-20). However, there is a gap in knowledge regarding PLWD and care transitions related to the specific settings of skilled HH and hospice. Chen et al. conducted a review of literature studying the impact of HH on end-of-life outcomes for PLWD (11). They found that HH may be associated with a lower risk of acute care utilization in the late period (e.g., last 90 days before death) but a higher risk in the late period (e.g., last 15 days); that HH may increase palliative care referrals; and that advance care planning was an important factor influencing end-of-life outcomes. They also found that challenges for HH providers in medical decision-making and initiating palliative care may require further training and external support. Hirschman et al. conducted an integrative review and found that existing measures focus heavily on the outcomes of healthcare resource use and cost rather than the elements of transitional care or care coordination for PLWD and their care partners (44). Chen et al.’s and Hirschman et al.’s articles were excluded from our results because they were reviews and did not fit our inclusion criteria. Given the gap in literature, we sought to examine care transitions of PLWD related to the settings of skilled HH and hospice.

Objective

The purpose of the present systematic review was to examine literature pertaining to (I) all care transitions for PLWD who are enrolled in skilled HH and hospice in the US and (II) specifically, care transitions between skilled HH and hospice for PLWD in the US. Results will inform interested parties on the effects of care transitions for PLWD in these two settings, which may lead to policy and practice changes to optimize care. Results will inform future research on health outcomes for PLWD in care transitions related to skilled HH and hospice. We present this article in accordance with the PRISMA reporting checklist (45) (available at https://apm.amegroups.com/article/view/10.21037/apm-23-524/rc).

Methods

A systematic review is a structured, comprehensive synthesis of literature to determine the best evidence available to address a healthcare question (46). The question was, “What is the literature pertaining to care transitions for PLWD enrolled in skilled HH and hospice and specifically between the two settings?” The review protocol was not formally registered. Study materials and data extracted from included studies can be obtained by contacting the corresponding author.

Eligibility

Inclusion criteria included English-language, peer-reviewed articles set in the US and published between 2017 and 2023 that addressed care transitions for PLWD or cognitive impairment related to skilled HH and hospice. The rationale for the timeframe was due to our intention to find evidence that might reflect recent US policy changes affecting PLWD in skilled HH and hospice (37,47,48). Exclusion criteria included articles older than the timeframe, did not fit the topic, and literature reviews, meta-analyses, study protocols, and opinion pieces. Inclusion and exclusion criteria appear in Table 1.

Search strategy and study selection

We employed a reference librarian (C.K.) to assist in the search. From March to July 21, 2023, and again on November 16, 2023, we searched CINAHL, PsychInfo (EBSCO version), and PubMed databases inputting keywords and index terms related to home health, care transition, hospice, and dementia (Appendix 1). The term, cognitive impairment, has been used as a measure of dementia—due to patient needs for reminders, levels of assistance, and levels of disorientation and delirium—and this approach is consistent with conceptual frameworks used to describe cognitive decline associated with dementia (7,8,49,50). Therefore, we included the search term, cognitive impairment.

Two authors (S.E.B., R.A.F.) reviewed articles independently. A three-step strategy was employed. Step 1 involved viewing titles and abstracts; Step 2 involved reading the full article content of studies identified for inclusion from Step 1; and Step 3 involved a manual search of reference lists for additional studies. We constructed a PRISMA flowchart to describe the selection process (Figure 1).

Figure 1 Prisma 2020 flow diagram.

Data extraction

We extracted relevant data including problem/purpose, design, sample, methods, instruments, findings, implications, and limitations. Information from included studies was extracted by authors S.E.B. and R.A.F. independently. Author G.L.T. resolved disagreements and checked for accuracy.

Quality assessment

Following Chen et al.’s example, we used the Critical Appraisal Skills Programme (CASP) tool kit to appraise the quality of the studies (https://casp-uk.net/casp-tools-checklists/) (11,51). Studies were rated as strong, moderate, or weak. Ratings were based on design, data collection method, intervention integrity, appropriate analysis, and implications for practice. Two authors (S.E.B., R.A.F.) appraised studies independently. Discrepancies were resolved through consensus.

Data synthesis

We narratively described the data on care transitions between HH and hospice for PLWD. We used synthesis, which is a textual approach to the data and involves an overall assessment of the robustness of the evidence. We described each of the studies and then grouped them by setting, while analyzing for similarities and differences between them (52). We were unable to conduct a meta-analysis due to methodological heterogeneity across studies.

Results

Of the 230 retrieved studies, 14 met the criteria for inclusion and are listed in Table 2 (38-43,53-60). Articles included were set in the US, published between 2017–2023, and were primarily quantitative studies involving descriptive or regression analyses of administrative datasets. One included study was qualitative. Results were grouped into three categories based on the research questions: Care Transitions for PLWD or Cognitive Impairment Enrolled in Skilled Home Health; Care Transitions for PLWD or Cognitive Impairment Enrolled in Hospice; and Care Transitions between Skilled Home Health and Hospice for PLWD. Figure 1 illustrates the study flow.

Care transitions for PLWDs or cognitive impairment enrolled in skilled HH

Four studies were found specific to care transitions for persons with dementia or cognitive impairment enrolled in skilled HH (53-56). Studies focused on discharge to community, demographics, readmission to HH, and readmission to hospital. Identified factors related to PLWD and transitions to and from HH included presence of cognitive impairment, stage of dementia, dependence for activities of daily living (ADL), and symptom burden.

When being discharged from the hospital, PLWD are more likely to be institutionalized in a skilled nursing facility than to transfer to skilled HH, even though PLWD may benefit more from a supportive home environment, and rates of mortality and readmission to the hospital are the same between the two settings (53). Longer skilled HH episodes for PLWD have been associated with successful discharge—remaining in community without hospital readmission or death—than short episodes for PLWD (54). Results in this category showed that PLWD in skilled HH are more likely than their counterparts without ADRD to have unsuccessful discharge to community and readmission to skilled HH. Unsuccessful discharge to community is defined as readmission to the hospital during skilled HH, unplanned hospitalization after discharge from skilled HH, or mortality (55). PLWD with early discharge from skilled HH—defined as missing more than two planned therapy visits—are more likely to have stage 4 dementia which represents more independence and a higher level of functioning (56). The literature in this category shows that PLWD benefit from the home setting and longer episodes of skilled HH care; but they are at higher risk for early, unsuccessful discharge to community, and higher rates of readmission to skilled HH than their counterparts without ADRD.

Care transitions for PLWDs enrolled in hospice care

Nine studies examined care transitions for PLWD enrolled in hospice care (38-43,57-59). Studies centered on live discharge from hospice and post-discharge characteristics.

PLWD are at risk for long hospice stays as well as live discharge from hospice. For example, among those with long hospice stays, dementia has been found to be the predominant diagnosis; however, PLWD are up to four times more likely to experience live discharge, for which Black or African Americans and Hispanic Americans are at higher risk (38-43). Live discharge from hospice affects caregiver decisions about re-enrollment in hospice because the care partners believe they need to wait for a medical crisis to re-enroll or are unsure of the appropriateness of the hospice service if their loved one cannot continuously receive it until death (57). In 2016, Medicare Hospice Payment Reform reduced payments to hospice agencies if clients remained longer than 60 days, thus providing impetus for live discharge of such patients (37,58). Predictors of live discharge from hospice for PLWD include younger age, being female, racial and ethnic minorities, dual eligibility for Medicare and Medicaid, and residing at home or in an assisted living facility (58).

Once PLWD are discharged from hospice, they have higher rates of emergency department use, lower rates of hospitalization, lower mortality, longer survival time, and initially lower but gradually increasing rate of hospice readmission than their counterparts without ADRD (59). Of these, Black patients have significantly worse outcomes than white patients (59).

Care transitions between skilled HH and hospice for PLWD

Only one study included results regarding the relationship between cognitive impairment and care transitions between skilled HH and hospice (60). Among all beneficiaries, people with cognitive impairment, severe ADL dependence, high symptom burden, and identification with Black and Hispanic race or ethnicity were found to have a shorter time receiving skilled HH services before transitioning to hospice care (60). Osakwe et al.’s study was the only one of our findings that addressed ADRD or cognitive impairment as a variable in transitions between skilled HH and hospice (60).

Discussion

In this systematic review, we aimed to highlight findings on (I) care transitions for PLWD enrolled in skilled HH and hospice and (II) specifically, care transitions for PLWD between skilled HH and hospice. We identified a gap in the literature: There was only one study providing evidence on care transitions between the two settings for PLWD (60).

For all US Medicare decedents regardless of diagnosis, Oh et al. found that 19.9% received HH only, 25.8% hospice only, and 18.8% had received both skilled HH and hospice, at some point during their last 6 months of life (61). The finding that 18.8% received both HH and hospice during the last 6 months of life may indicate care transitions between the two settings. It is unknown what proportion of these decedents were PLWD.

Our findings are notable because they point to the propensity for PLWD to experience care transitions that involve skilled HH and hospice, which holds implications for policy, research, and practice. We found that in skilled HH care, PLWD benefit from longer episodes, but they are at higher risk for early, unsuccessful discharge to community, and they are at higher risk for both a shorter time to transition to hospice and for readmission to HH, especially among minoritized patients. Appropriate timing of referral to hospice for PLWD may be affected by the limitations of current prognostic assessment tools based on functional status, since PLWD may show other predictors of decline related to social determinants of health, quality of life, or neuropsychiatric symptoms which are not included in many prognostic assessments (62,63). These limitations in prognostication may contribute to greater risk of long lengths of stay or live discharge from hospice, in turn affecting caregiver decisions about re-enrollment in hospice care. We did not find support for the phenomenon of PLWD transitioning between skilled HH and hospice. It may be that the phenomenon does not exist; however, it is possible that the transition may not be direct, involving a third care setting such as a skilled nursing facility or hospital (64). For example, crisis events may prompt hospitalization between the skilled HH and hospice settings for PLWD. That is, a PLWD in skilled HH may experience a crisis and transition to the hospital where goals of care conversations take place, and then transition to hospice care. Likewise, a PLWD receiving hospice care may choose to revoke the hospice benefit in favor of hospitalization, and then transition to skilled HH. Another possibility contributing to the lack of literature on this topic involves methodological choices affecting inclusion and exclusion criteria in research.

Current US policy may affect care transitions between skilled HH and hospice for PLWD. For example, in January 2020, the CMS implemented the Patient-Driven Groupings Model (PGDM), designed to place greater emphasis on a patient’s clinical, health, and functional characteristics when determining the payment rate in HH (47,48). PDGM disincentivizes skilled HH agencies from admitting patients with chronic and complex conditions, such as ADRD, that require more visits and longer durations of care (47). As well, current US hospice regulations reducing reimbursement after 60 days of enrollment dissuade providers from admitting and recertifying patients with chronic conditions such as ADRD, even though the literature supports that PLWD and their care partners benefit from hospice services (35,36). Therefore, adjusting hospice eligibility criteria for PLWD and developing integrated models of care across the continuum may ensure that PLWD and their care partners have the support they need (39). Alternatives include dementia care management programs and home-based palliative care, which could either integrate with or replace hospice services (38,39). Home-based care, including longer lengths of stay in skilled HH and hospice, has been shown to benefit PLWD, but current US policy on skilled HH and hospice discourages long lengths of stay. Given the prevalence of ADRD diagnoses in both settings, the preference for and benefits of home-based care among PLWD, and current US policy encouraging discharge from each service, a deeper examination of transitions between skilled HH and hospice is necessary. That is, PLWD may be experiencing multiple care transitions between the two Medicare-reimbursed home-based services, but research is needed to examine this. Future research should examine such transitions in non-US countries, as policies and practices may vary.

Future research should examine health outcomes related to PLWD who transition between skilled HH and hospice, with methodological approaches that capture this population appropriately. Further, future research should test precision health approaches, including clinical decision support tools, which move beyond current prognostic assessment tools used in HH and hospice for PLWD (62,63). These precision health approaches could be ultimately integrated into health systems to prompt health care providers to have goals-of-care conversations with PLWD and their caregivers to determine appropriate services such as skilled HH and hospice (62). Implications for practice include staff education and communication training about end-of-life trajectories and needs for PLWD and their care partners in HH and hospice.

For PLWD and their care partners, services should be tailored and equitable (12). Our findings hold implications for practice, supporting those of Mogan et al.’s narrative synthesis which underscored the importance of generating innovative strategies such as compassionate community palliative care initiatives for care provision for PLWD, who are at risk for multiple care transitions including skilled HH and hospice (65). Further, having one designated healthcare provider has been recommended to guide PLWD and their care partners throughout the disease trajectory to assuage fragmentation in dementia care (66).

Care transitions toward end of life carry various effects on clients, family members, and health care providers; therefore, all interested parties may need education about skilled HH, end-of-life care, hospice care, and palliative care (67,68). Positive care transitions have been associated with family decision-making strategy education as well as general education about care transitions, end of life, hospice, and palliative care, which take place early in the dementia disease process (68,69).

Facilitators of hospice discussions in the skilled HH setting have included interdisciplinary team-based clinical review, clinical decision support tools to determine hospice eligibility, and staff training (30). Several models exist for communicating about such themes (70-72). For example, Bigger et al. tested the COMFORT© communication model among the skilled HH interprofessional team and found that it was feasible and highly acceptable for training the team in discussing palliative care, hospice care, and advance care planning with skilled HH patients and their care partners and may assist providers in supporting PLWD and their care partners in avoiding inappropriate care transitions and facilitating goal-concordant care (29,71).

Strengths and limitations

We comprehensively and systematically searched the literature by applying a wide range of search terms related to our topic. We critically appraised the quality of the studies using a standardized tool. Limitations of evidence in the literature appear in Table 2. Although the timeframe was intended to reflect recent US policy changes, it may have limited the results. For example, no included studies listed provider comfort with discussing end-of-life themes as a potential variable affecting care transitions for PLWD. Limitations of the review process include the lack of meta-analysis. There was also a limitation in that we did not include hospitalization as a potential care transition between the two settings of HH and hospice. Further, the research was limited by the inclusion criteria of studies set in the US, as skilled HH and hospice may look different in other countries, based on policy and practice. Finally, the literature on hospice did not differentiate between home hospice and in-patient hospice.

Conclusions

Evidence shows that both HH and hospice benefit PLWD and their care partners (25-27,35). Our findings illustrate there is a high risk of care transitions for PLWD, especially for those from racial and ethnic minoritized groups; however, we found a gap in the literature specifically regarding transitions between skilled HH and hospice for PLWD. Given PLWD’s long trajectory of decline, future research should include dementia or cognitive impairment as a factor in studying care transitions for PLWD enrolled in skilled HH and hospice. In addition, future work should explore assessment approaches specific to PLWD that lead to higher quality of coordination of care to, from, and between skilled HH and hospice.

Acknowledgments

The authors would like to thank Milton Bigger for serving as copy editor.

Funding: None.

Footnote

Reporting Checklist: The authors have completed the PRISMA reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-23-524/rc

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-23-524/prf

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-23-524/coif). G.L.T. serves on a DSMB for a clinical trial related to in home palliative care for patients living with dementia and their care partners. The main role of the DSMB is to ensure the study is progressing safely. The other authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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