Survival in hospice patients with dementia: the effect of home hospice and nurse visits

Abstract

Background:

Hospice patients with dementia are at increased risk for live discharge and long lengths of stay (>180 days), causing patient and family caregiver stress and burden. The location and timing of clinician visits are important factors influencing whether someone dies as expected, in hospice, or experiences a live discharge or long length of stay.

Objective:

Examine how home hospice and nurse visit frequency relate to dying in hospice within the Medicare-intended 6-month period.

Design:

Retrospective cohort study.

Setting:

Non-profit hospice agency.

Participants:

Three thousand eight hundred and thirty seven patients with dementia who received hospice services from 2013 to 2017.

Methods:

Multivariable survival analyses examined the effects of receiving home hospice (vs. nursing home) and timing of nurse visits on death within 6 months of hospice enrollment, compared to live discharge or long length of stay. Models adjust for relevant demographic and clinical factors.

Results:

Thirty-nine percent (39%) of patients experienced live discharge or long length of stay. Home hospice patients were more likely to experience live discharge or long length of stays (HR for death: 0.77, 95%CI: 0.69–0.86, p < 0.001). Frequency of nurse visits was inversely associated with live discharge and long lengths of stay (HR for death: 2.87, 95%CI: 2.47–3.33, p < 0.001).

Conclusion:

Nearly 40% of patients with dementia in our study experienced live discharge or a long length of stay. Additional research is needed to understand why home hospice may result in live discharge or a long length of stay for patients with dementia. Nurse visits were associated with death, suggesting their responsiveness to deteriorating patient health. Hospice guidelines may need to permit longer stays so community-dwelling patients with dementia, a growing segment of hospice patients, can remain continuously enrolled in hospice and avoid burden and costs associated with live discharge.

INTRODUCTION

Hospice is an interdisciplinary care model providing support to dying persons and their families. Medicare, the largest hospice care payer in the United States, has eligibility criteria requiring persons agree to forego curative treatment for their terminal illness and have a predicted life expectancy of 6 months or less.¹ As such, hospice patients’ expected outcome is death within 6 months of enrollment (“expected death”). Hospice provides care in multiple settings, including home, nursing facilities, and in-patient hospice residences. In the United States, over half (51.5%) of persons with hospice care die at home, and about one-sixth (17.4%) in a nursing home, long-term care, or skilled nursing facility.² In 2017, over three quarters of persons with dementia died in a nursing home (55.0%) or at home (21.9%),³ and in 2014, 44.7% of Medicare hospice users had a dementia diagnosis.⁴ These figures underscore the importance of understanding hospice experiences for persons with dementia at home and in nursing homes.

Many of the growing number of hospice patients with dementia^2,5,6 experience unintended, and potentially problematic, outcomes: live discharge and lengths of stay longer than 180 days (“long LOS”). Live discharge occurs if the patient is hospitalized, seeks curative treatment for their terminal condition, transfers from the hospice service location, or experiences a stabilization in their condition making them ineligible for hospice services. Because disease trajectories in dementia are uncertain,^7-11 patients with dementia experience increased risk for live discharge due to hospitalization and condition stabilization,^7,8 a problematic pattern for some hospice providers.¹² As no curative treatments for terminal dementia exist, this live discharge type is less common among persons with dementia. Live discharge can be stressful for patients and families. It is often a burdensome and disruptive transition, resulting in a loss of physician, nursing, social work, home health aides, and other sources of hospice services and support.^11,13,14 Persons with dementia are also at increased risk for long LOS,^15,16 due, in part, to uncertain disease trajectory and lack of reliable mortality prognostication tools.^7-11,17 The regulatory environment discourages long LOS in hospice, which are monitored by the Centers for Medicare and Medicaid Services (CMS).¹⁸ Although hospice provides valuable support to patients and families regardless of duration, long LOS can be problematic for families. They are associated with increased risk of live discharge.⁹ As hospice recertification at 180 days of service approaches, family members may feel anxiety and uncertainty about potential hospice service disruption. Families of patients with long LOS provide end-of-life caregiving for protracted periods of time, which is associated with higher levels of strain and financial, emotional, and physical difficulty.^19,20

Home hospice patients may be particularly vulnerable to live discharge and long LOS. Usually home hospice provides limited in-person care, leaving a majority of hands-on care to family and/or privately paid caregivers when hospice staff are not present. Family caregivers report feeling unprepared and experiencing distressing responses to patient pain and delirium.^21-23 Families may hospitalize loved ones experiencing uncontrolled symptoms or if they feel they cannot provide adequate care at home, resulting in live discharge.²⁴ Hospice care may help manage behavioral symptoms, enabling persons with dementia to remain in their homes for longer. Hospice support and services may also slow overall decline in persons with dementia, leading to longer LOS. The potential downside of managed symptoms and long LOS is increased risk of family caregiving burden and live discharge due to condition stabilization. Given the increasing numbers of persons with dementia receiving home hospice care and the potential negative consequences of live discharge and long LOS, it is important to understand whether and how hospice services and outcomes differ by care delivery setting.

Nurse visits are an important, modifiable component of hospice care. Regularly spaced nurse visits provide ongoing support to families and allow for adjustments to care for patients in relatively stable conditions, as may be the case for persons with dementia.²⁵ Visits are scheduled flexibly and responding to patient condition changes, such as increased pain or functional decline, providing needed support to families and patients. These visits are particularly important in the last week of life when symptom burden is highest^25,26 and may help prevent hospitalization among hospice patients due to uncontrolled symptoms, potentially preventing live discharge. Hospice nurse visit frequency may differ by hospice delivery setting. Nursing home patients have access to on-site clinicians, who may coordinate care with hospice nurses. In contrast, hospice nurses are usually the only clinical care providers that home hospice patients regularly encounter. The role of nurse visits, and potential differences based on hospice setting, are potentially important factors in understanding risk for expected death versus long LOS and live discharge.

This study aims to examine the relationship between two important aspects of hospice care and risk of patients with dementia experiencing death within 6 months of enrollment. First, we examine care location (home vs. nursing home). Second, we analyze the relationship between hospice nurse visit frequency and expected death. Nurses comprise the largest proportion of hospice professionals, are the professional care team members with the most frequent and regular contact with hospice patients,²⁷ and thus are well-positioned to influence hospice care and outcomes. Finally, we examine the interaction between care location and nursing visits to determine if hospice nursing visits vary by care setting.

METHODS

Study design

This retrospective cohort study used electronic medical records for a population of 23,526 patients who received hospice care from 2013 to 2017 from a large not-for-profit hospice agency in New York City (NYC) with an average daily census of over 1200 patients in all NYC boroughs. We limited the analysis to patients age 65 and older (n = 19,105) with a primary or comorbid dementia diagnosis in the medical record (n = 5503). We excluded 1360 patients who spent fewer than 7 days in hospice. This analytic decision was conceptually important to examine outcomes for individuals who use hospice as optimally intended by best practice and regulatory policy.^1,28,29 It also allows us to examine the enduring effect of nurse visits on patient outcomes after the initial 1-week enrollment period. Overall results were similar in sensitivity analyses including patients with LOS less than 7 days. We excluded 155 hospital or residential hospice facility patients, and 12 who had no nurse visit during their hospice stay (n = 3976). We excluded 136 patients with no recorded hospice discharge status and 3 missing a functional status measure upon hospice admission. These 139 patients did not differ from those in the sample on any covariates except Charlson Comorbidity Index, which was higher in patients excluded from the sample (2.6 vs 2.9, p < 0.001). In the final analytic sample (n = 3837), 61% (2352) died within 180 days of hospice enrollment; 39% (1485) experienced a long LOS (>180 days) or live discharge. Half (54%) of the sample died in 2016–2017 after the Medicare hospice service intensity add-on payment reform went into effect.

Measures

Our primary outcome was death within 6 months of enrollment, the expected outcome in hospice care. Key predictors were location of hospice care as recorded in a structured field in the electronic hospice record at admission (home = 1; nursing home = 0) and the lasting effect of hospice nurse visits. In hospice care, nurse visits are not fixed upon patient enrollment. Nurses visit patients multiple times and at varying intervals, depending on individual patient needs, and more frequently at the very end of life. Nurse visits affect patients beyond the duration of the visit itself. Nurses adjust medications or provide guidance to families about how to keep patients comfortable until their next visit. To construct the nurse visit variable, we created a time-dependent variable using dates for individual nurse visits. To measure the time nurse visits benefit patients, we used the Medicare standard of care requiring every patient be visited, minimally, every 2 weeks, broken down into 1-week periods. In order to estimate expected hospice deaths as a function of variation in nurse visits and potential variation in the lasting benefit of each visit, we treated nurse visits and their potential benefit for 1–7 and 8–14 days after the visit as time-varying covariates in our model.^30,31 We examined the moderation effect of the lasting effect of hospice nurse visits by care setting using an interaction term.

We controlled for patient demographic and clinical factors previous research indicates are associated with long LOS and live discharge in the general hospice population. Patients who are African American,^8,10,32 Hispanic,^8,10 younger,^5,33-35 not currently married ⁹ have lower socioeconomic status (as indicated by Medicaid eligibility),^8,35 prior hospitalization,^7,36 greater functional status upon hospice enrollment,³⁷ and with fewer comorbidities³⁵ are at increased risk of live discharge. The relationship between gender and live discharge is unclear: some studies report it is more common among women, ^5,8,38 others among men. Patients who are African American,⁶ non-white,⁵ female,^5,6 and have a primary diagnosis of dementia⁵ are at increased risk of long LOS. Older age has been associated with both increased⁶ and decreased⁵ risk for long LOS. Clinical factors included primary/comorbid dementia diagnosis, prior hospitalization, functional status at hospice enrollment (responsive/unresponsive and Palliative Performance Scale³⁹), and Charlson Comorbidity Index.⁴⁰

Analysis

We calculated descriptive statistics, comparing patients who died within 6 months of hospice enrollment to those with a long LOS or live discharge (Table 1). We used survival analysis to examine the influence of care setting and nurse visit frequency (Model 1) and the interaction between the two (Model 2) on risk (hazard) of expected death versus live discharge or long LOS. Survival analysis allows us to robustly utilize the information of time to death and accommodate the dynamic time-varying effect of nurse visits on patients’ survival outcome. Results were similar in sensitivity analyses using adjusted logistic regression models. We used a cox proportional hazard model with a time-varying effect for nurse visits to identify risk factors for expected death. Our interests were in examining hospice use, as intended by practices and regulatory guidelines specifying late referrals (LOS < 7 days) and long LOS (>180 days) should be avoided,^1,28,29 and nurse visits’ lasting effect. Patients entered the analysis after 7 days of hospice enrollment and exited if they died within 6 months. We treated all respondents who experienced live discharge or long LOS as right censored. We treated nurse visits as time varying to reflect their repeated and fluctuating nature during the course of hospice enrollment.³¹ We first estimated the adjusted hazard ratio for home hospice and time varying effect of nurse visits for up to 7 days following the visit, controlling for patient demographic and clinical factors, then included the time-varying effect of nurse visits in 8–14 day intervals. We then included an interaction for hospice setting and nurse visits. We reported survival analysis results as hazard coefficients and hazard ratios. Hazards are the chance of dying at any moment, given a patient survived to that moment. Hazard ratios compare hazards for each variable of interest (e.g., home hospice vs. institutional setting).⁴¹ Finally, we plotted the predicted probability of survival, or not dying, over time based on location of hospice care, holding all other covariates at their mean (for continuous variables) or modal (for categorical variables) values. We conducted analyses in R using the “survival” and “survminer” packages.

TABLE 1.

Descriptive statistics for 3837 hospice patients age 65 and older with a dementia diagnosis with length of stay >7 days, 2013–2017

	Total sample n = 3837 100% Number/ Mean	%/SD	Death within 6 months of enrollmenta n = 2352 61.30% Number/ Mean	%/SD	Live discharge or long length of stay (>180 days) n = 1485 38.70% Number/ Mean	%/SD	p value
Hospice service delivery
Length of service (r: >7 days)	83.00	68.40	47.45	44.93	139.31	60.99	<0.001b
Home hospice	3085	80.4%	1861	79.1%	1224	82.4%	0.014c
Demographic/clinical characteristics
Race/ethnicity							0.008c
African American	598	15.6%	365	15.5%	233	15.7%
Hispanic	804	21.0%	454	19.3%	350	23.6%
Other race/ethnicity	352	9.2%	213	9.1%	139	9.4%
Non-Hispanic white (ref)	2083	54.3%	1320	56.1%	763	51.4%
Female	2771	72.2%	1692	71.9%	1079	72.7%	0.654c
Age (r: 65–111)	89.58	7.45	90.00	7.33	88.91	7.59	<0.001b
Medicaid	87	2.3%	44	1.9%	43	2.9%	0.049c
Not married	2807	73.2%	1729	73.5%	1078	72.6%	0.556c
No children	916	23.9%	592	25.2%	324	21.8%	0.020c
Primary dementia diagnosis	2652	69.1%	1611	68.5%	1041	70.1%	0.311c
Charlson score (r: 1–12)	2.56	1.48	2.59	1.52	2.50	1.41	0.049b
Palliative Performance Scale (r: 10–100)	32.90	9.08	31.60	9.04	34.95	8.75	<0.001b
Unresponsive at hospice admission	556	14.5%	332	14.1%	224	15.1%	0.434c
Referred to hospice from hospital	1355	35.3%	848	36.1%	507	34.1%	0.241c

^aBased on discharge decision within 180 days, excluding censored data.

^bWelch t-test. r = range. SD = standard deviation.

^cChi square test.

RESULTS

Table 1 presents descriptive statistics for the analytic sample, patients who died within 6 months of enrollment, and those with live discharge or long LOS. Sixty-one percent (61%) of patients died as expected. On average, patients spent 83 days in hospice and 80% received home hospice. Over half (54%) of patients were non-Hispanic white, 21% Hispanic, 16% African American, and 9% other race/ethnicity. Most were female (72%) and were, on average, 89.6 years old. Sixty-nine percent (69%) had a primary diagnosis of dementia. Compared to patients with long LOS or live discharge, on average, patients who had an expected death had shorter LOS, received home hospice less often, and were slightly older. They also had more comorbidities and lower functional status at enrollment. Figure 1 illustrates the number and proportion of the sample that experienced expected death, long LOS, and live discharge by reason. Of the 39% (n = 1485) of patients who experienced live discharge or long LOS, 59% had a long LOS, 17% were hospitalized, and 13% were discharged because their condition stabilized.

FIGURE 1.

Hospice outcomes for 3837 patients with dementia, 2013–2017

Table 2 presents the results from survival analysis including the effects of home hospice, nurse visits for 1–7 days following the visit, and the interaction between the two. The 8–14-day effect was not significant and did not improve model fit, and so is not reported. Home hospice care and nurse visits had opposite relationships to expected death in hospice. In model 1, patients who received home hospice had a 23% lower hazard of expected death (adjusted hazard ratio [AHR]: 0.77; 95%CI: 0.69, 0.86; p < 0.001), compared to patients who received hospice in nursing homes. As expected, dying patients prompt clinical attention, therefore on any given day of the hospice stay, if a patient received a nurse visit in the previous 7 days, their hazard of death is 187% greater than if they did not receive a nurse visit during that time period (AHR: 2.87; 95%CI: 2.47, 3.33; p < 0.001). In Model 2, home hospice modified the lasting effect of nurse visit on death/discharge result (interaction term p < 0.001). Compared to nursing home hospice patients, receiving a nurse visit in the previous week was associated with a 140% additional increase in hazard ratio for death (AHR 2.40; 95%CI: 1.77, 3.26) among home hospice patients. The main effects for home hospice and nurse visits remained significant.

TABLE 2.

Coefficients, adjusted hazards, and 95% confidence intervals for survival analysis predicting death within 6 months of hospice enrollment for 3837 patients age 65 and older with a dementia diagnosis, 2013–2017

	Model 1					Model 2
	Coeff.	AHR	95%CI		p value	Coeff.	AHR	95%CI		p value
Hospice service delivery
Home hospice	−0.26	0.77	0.69	0.86	<0.001	−1.02	0.36	0.27	0.48	<0.001
Nurse visit intensity variable 1–7 day period	1.06	2.87	2.47	3.33	<0.001	0.55	1.73	1.39	2.15	<0.001
Interaction: home hospice × nurse visit 1–7 days						0.88	2.40	1.77	3.26	<0.001
Demographic/clinical characteristics
Race/Ethnicity
African American	−0.08	0.92	0.82	1.04	0.18	−0.09	0.92	0.82	1.03	0.15
Hispanic	−0.19		0.74	0.92	<0.001	−0.20	0.82	0.73	0.92	<0.001
Other race/ethnicity	−0.15	0.86	0.75	1.00	0.050	−0.15	0.86	0.75	1.00	0.051
Non-Hispanic white (ref)
Female	−0.12	0.89	0.81	0.98	0.02	−0.12	0.89	0.81	0.98	0.02
Age (r: 65–111)	0.01	1.01	1.01	1.02	<0.001	0.01	1.01	1.01	1.02	<0.001
Medicaid	−0.33	0.72	0.54	0.95	0.02	−0.33	0.72	0.54	0.95	0.02
Not married	0.03	1.03	0.93	1.14	0.54	0.04	1.04	0.94	1.15	0.50
No children	0.02	1.03	0.93	1.13	0.62	0.03	1.03	0.93	1.13	0.60
Primary dementia diagnosis	−0.13	0.88	0.80	0.97	0.01	−0.13	0.88	0.80	0.97	0.01
Charlson score (r: 1–12)	0.05	1.05	1.02	1.08	0.001	0.05	1.05	1.02	1.08	0.001
Palliative Performance Scale (r: 10–100)	−0.34	0.72	0.68	0.75	<0.001	−0.34	0.71	0.68	0.75	<0.001
Unresponsive upon hospice admission	−0.12	0.89	0.78	1.00	0.052	−0.12	0.89	0.78	1.00	0.054
Referred to hospice from hospital	0.13	1.14	1.04	1.24	0.01	0.12	1.13	1.03	1.24	0.01

Note: Interpretation of Results: Model 1: Patients receiving hospice care at home (compared to in a nursing home) had a 23% lower hazard of dying within 6 months of hospice enrollment. Patients who received a nursing visit within the prior 7 days had a 187% higher hazard of dying within 6 months of hospice enrollment. Model 2: Compared to nursing home hospice patients, nurse visit is associated with an additional increase in hazard ratio for death (AHR 2.40; 95%CI: 1.77, 3.26) among home hospice patients.

Abbreviations: AHR, adjusted hazard ratio; CI, confidence interval.

Figure 2 compares the predicted probability of survival by hospice setting, holding all other covariates at their modal (for categorical variables) or mean (for continuous variables) values. Predicted probability of survival is greater for home hospice patients than for nursing home patients. The difference in predicted probability of survival increases with LOS. At 30 days of hospice, home hospice patients have a 0.83 predicted probability of survival, compared to 0.81 for nursing home patients. At 90 days of hospice, home hospice patients have a 0.67 predicted probability of survival, compared to 0.63 for nursing home patients.

FIGURE 2.

Predicted probability of survival for patients receiving hospice at home versus in nursing homes. Note : Survival calculated holding categorical variables at their modes and continuous variables at their means. As such, the curves represent predicted survival in home and nursing home hospice for a non-Hispanic white female, age 90, not on Medicaid., not married, with children, a primary diagnosis of dementia, referred to hospice from a site other than a hospital, who, upon hospice admission, was responsive and had a Charlson Comorbidity Index of 2.56 and a Palliative Performance Scale score of 32.90. At 30 days of hospice, this patient would have a 0.83 predicted probability of survival in home hospice, compared to 0.81 in nursing home hospice

DISCUSSION

This study found home hospice patients had a lower risk of dying within 6 months of hospice enrollment and those who received a nurse visit within the past 7 days had a higher risk of dying, adjusting for patient demographic and health factors. Nurse visit effects varied by care setting. Home hospice patients being less likely to experience an expected death may result from how hospice patients are selected into receiving care at home versus nursing homes, resulting in long LOS or live discharge. Although hospice patients must meet the same eligibility criteria regardless of care setting, home hospice patients may be somewhat healthier and have higher functioning than those in nursing homes.⁴² Home hospice patients had higher mean Palliative Performance Scale scores upon admission compared to nursing home hospice patients (33 vs. 32). However, these scores are typical in dementia and predictive of expected death.³⁷ The relationship between home hospice and decreased risk of expected death is independent of patient primary diagnosis, comorbidities, and functional status upon enrollment, but may be linked to disease or functional limitations not reflected in the data. Home hospice patients often rely on family caregivers to provide additional support when hospice staff are not present. This support may help to stabilize the patient’s overall condition, leading to longer LOS or live discharge. Home hospice patients may also be more likely to experience live discharge, regardless of reason, than those in nursing homes. In our sample, 30% of home hospice patients had live discharge compared to 26% of nursing home hospice patients. Additional research is needed to better understand potential differences between home and nursing home hospice patients’ status at hospice enrollment and reasons hospice patients may be discharged from home at higher rates.

Policies may benefit home hospice patients more than those in nursing homes. New York State, where the study occurred, has generous home health aide benefits through managed long-term care and paid family caregiver leave programs which support seriously ill, functionally impaired older adults to remain at home. Coupled with hospice services, they may help slow patients’ decline, leading to longer LOS. Studies comparing hospice outcomes to similar providers in New York and other states might elucidate how much our results are artifacts of state policy. Regardless, home hospice care, even for extended periods, is less expensive than hospital care, where many patients discharged from hospice end up.^13,43

If home hospice care allows persons with dementia to die at home, we may want to consider policies that relax the “six months or less life expectancy” requirement for hospice enrollment, that discourage disenrollment due to condition stabilization, and that support family caregivers to avoid hospitalization. Hospice patients with other noncancer diagnoses associated with long LOS and live discharge, such as heart failure, may also benefit from updated, more flexible policies. The six-month life expectancy guideline is arbitrary and based on budgetary considerations at the time of implementation.⁴⁴ Nor is the guideline clinically validated or aligned with physicians’ ability to prognosticate remaining life span,⁴⁴ a challenge exacerbated in dementia. Live discharge due to condition stabilization is more common among persons with dementia.^7,8 Families struggle to replace the services and supports lost when hospice services are withdrawn, formal guidelines to support the live discharge process are lacking, and few alternatives exist for replicating hospice services.^11,45 Community-dwelling persons with dementia are at increased risk for hospitalization, rates of which increase in the last year of life.⁴⁶ Providing continuous hospice services to community-dwelling persons with dementia and their families could help prevent the distress and costs (e.g., due to avoidable hospitalization) that often accompany live discharge.

We found that hospice patients who receive a nurse visit within the previous week had greater hazard of dying compared to patients who did not receive a visit, and that this effect differed by care setting. Almost all (92%) patients who died within 6 months of hospice enrollment received a nurse visit within a week of death. This may result from the hospice team recognizing a patient’s imminent death and providing in-person support. Nurse visits as death approaches are consistent with Medicare’s 2016 hospice service intensity add-on payment reform acknowledging more intensive patterns of hospice care at the very end of life and providing higher compensation accordingly.²⁸ Moreover, our results suggest the NYC hospice provider studied here provided care responsive to imminent death before the 2018 CMS Measure went into effect requiring hospice team visits within 3 days of death.⁴⁷ Visits when death is imminent allows hospice nurses to adjust patient medications and care in response to deteriorating patient condition. Responding to changing patient conditions with timely nurse visits may give families needed support and confidence to keep the actively dying patient safely at home, avoiding live discharge due to hospitalization. Nurse visits may be especially important for meeting persons with advanced dementia’s needs, as persons with dementia on hospice received scheduled opioids for pain and their caregivers reported fewer unmet needs.⁴⁸ We found the lasting effect of nurse visits differs by hospice setting. Compared to nursing home hospice patients, home hospice patients who received a nurse visit in the previous week had increased risk of expected death. Although hospice nurses provide similar services to patients regardless of setting, the observed difference may be attributable to on-site nursing home clinical staff who can respond more quickly to patient needs and coordinate care with hospice nurses.

Limitations

This study used data from a single not-for-profit hospice agency in the northeast, so results may not be generalizable to for-profit hospices or either type of agency in other geographic areas. Second, the electronic medical record data we used does not systematically provide reasons for long LOS or live discharge. Analysis of clinician notes in hospice records and qualitative research among patients with dementia, their caregivers, and hospice clinicians may clarify circumstances leading to long LOS and live discharge. Third, nursing home patients receiving hospice care will have received visits from facility nurses and staff not captured in these data, which may influence the relationship between hospice nurse visits and expected death. Finally, this study uses retrospective data, limiting our ability to understand the mechanisms linking home hospice, nurse visits, and risk of expected death.

Conclusion

Patients with dementia who receive home hospice care, compared to in nursing homes, were less likely to experience an expected death, increasing their risk for live discharge, and potentially resulting in uncertainty and distress when hospice services are withdrawn. Additional research is needed to better understand how individual patient factors, family characteristics and support, and policy contexts contribute to long LOS and live discharge in home settings. Flexibility in hospice guidelines that allow for longer hospice stays without penalties could help patients with dementia remain continuously enrolled in hospice, preventing the burden and costs associated with live discharge. In contrast, frequency of nurse visits was positively associated with expected death, suggesting hospice clinicians provide in-person responses to deteriorating patient conditions when death is imminent. These nursing visits may help to prevent hospitalization among patients with dementia at the very end of life.

Key Points

• A substantial proportion of hospice patients with dementia (39%) experience a live discharge or long length of stay in hospice.

• Home hospice is associated with long lengths of stay and live discharge.

• Frequency of nurse visits are associated with death within 6 months of hospice enrollment.

Why Does this Paper Matter?

Thirty-nine percent (39%) of hospice patients with dementia have a live discharge or long length of stay. Home hospice patients are at increased risk for these outcomes. Nurse visits reduce risk of these outcomes. Policy may need to adapt to respond to the needs of hospice patients with dementia.