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The Cochrane Database of Systematic... Mar 2021The policy several countries is to provide people with a terminal illness the choice of dying at home; this is supported by surveys that indicate that the general public... (Meta-Analysis)
Meta-Analysis
BACKGROUND
The policy several countries is to provide people with a terminal illness the choice of dying at home; this is supported by surveys that indicate that the general public and people with a terminal illness would prefer to receive end-of-life care at home. This is the fifth update of the original review.
OBJECTIVES
To determine if providing home-based end-of-life care reduces the likelihood of dying in hospital and what effect this has on patients' symptoms, quality of life, health service costs and caregivers compared with inpatient hospital or hospice care.
SEARCH METHODS
We searched CENTRAL, Ovid MEDLINE(R), Embase, CINAHL, and clinical trials registries to 18 March 2020. We checked the reference lists of systematic reviews. For included studies, we checked the reference lists and performed a forward search using ISI Web of Science. We handsearched palliative care journals indexed by ISI Web of Science for online first references.
SELECTION CRITERIA
Randomised controlled trials evaluating the effectiveness of home-based end-of-life care with inpatient hospital or hospice care for people aged 18 years and older.
DATA COLLECTION AND ANALYSIS
Two review authors independently extracted data and assessed study quality. When appropriate, we combined published data for dichotomous outcomes using a fixed-effect Mantel-Haenszel meta-analysis to calculate risk ratios (RR) with 95% confidence intervals (CI). When combining outcome data was not possible, we reported the results from individual studies.
MAIN RESULTS
We included four randomised trials and found no new studies from the search in March 2020. Home-based end-of-life care increased the likelihood of dying at home compared with usual care (RR 1.31, 95% CI 1.12 to 1.52; 2 trials, 539 participants; I = 25%; high-certainty evidence). Admission to hospital varied among the trials (range of RR 0.62, 95% CI 0.48 to 0.79, to RR 2.61, 95% CI 1.50 to 4.55). The effect on patient outcomes and control of symptoms was uncertain. Home-based end-of-life care may slightly improve patient satisfaction at one-month follow-up, with little or no difference at six-month follow-up (2 trials; low-certainty evidence). The effect on caregivers (2 trials; very low-certainty evidence), staff (1 trial; very low-certainty evidence) and health service costs was uncertain (2 trials, very low-certainty evidence).
AUTHORS' CONCLUSIONS
The evidence included in this review supports the use of home-based end-of-life care programmes for increasing the number of people who will die at home. Research that assesses the impact of home-based end-of-life care on caregivers and admissions to hospital would be a useful addition to the evidence base, and might inform the delivery of these services.
Topics: Aged; Attitude of Health Personnel; Attitude to Death; Bias; Caregivers; Female; Health Services Accessibility; Home Care Services; Hospice Care; Hospitalization; Humans; Male; Middle Aged; Patient Preference; Randomized Controlled Trials as Topic; Residence Characteristics; Time Factors
PubMed: 33721912
DOI: 10.1002/14651858.CD009231.pub3 -
Annals of Palliative Medicine Feb 2019Palliative care offers patients with a serious illness and their families access to services that can improve quality of life, mood, and symptoms. However, the term... (Meta-Analysis)
Meta-Analysis
Palliative care offers patients with a serious illness and their families access to services that can improve quality of life, mood, and symptoms. However, the term palliative care is often confused with end of life or hospice services limiting its application to persons with chronic illnesses who might benefit. Non-hospice palliative care is a term that is emerging to more accurately reflect the broader care model that palliative care represents. The aim of this review was to identify the characteristics of published nonhospice palliative care interventions. We derived our sample predominantly from a recently published systematic review and meta-analysis and selected studies published since the review. Inclusion criteria were: self-described palliative care intervention studies using randomized designs for participants with lifelimiting illnesses aged 18 years or older. These 38 studies fell into 3 broad categories: primary, specialty, and hybrid models. Common challenges among these models include limited education of generalists, limited reimbursement, and limited access in certain areas. However, increasing palliative care usage has also been associated with increased hospice use and appropriate timing of referrals.
Topics: Adolescent; Adult; Aged; Ambulatory Care; Facilities and Services Utilization; Home Care Services; Hospice Care; Hospitalization; Humans; Middle Aged; Models, Organizational; Palliative Care; Patient Care Team; Randomized Controlled Trials as Topic; Young Adult
PubMed: 29860852
DOI: 10.21037/apm.2018.03.11 -
Palliative Medicine Jun 2019Nursing homes are becoming a common site where delivering end-of-life care for older adults. They often represent the junction between the curative and the palliative...
BACKGROUND
Nursing homes are becoming a common site where delivering end-of-life care for older adults. They often represent the junction between the curative and the palliative phase.
AIM
To identify the elements that nursing home residents' family carers perceive as good end-of-life care and develop a conceptual model of good end-of-life care according to the family perspective.
DESIGN
Systematic review (PROSPERO no. 95581) with meta-aggregation method.
DATA SOURCES
Five electronic databases were searched from inception between April and May 2018. Published qualitative studies (and mixed-method designs) of end-of-life care experience of nursing home family carers whose relative was dead or at the end-of-life were included. No language or temporal limits were applied.
RESULTS
In all, 18 studies met inclusion criteria. A 'life crisis' often resulted in a changed need of care, and the transition towards palliative care was sustained by a 'patient-centered environment'. Family carers described good end-of-life care as providing resident basic care and spiritual support; recognizing and treating symptoms; assuring continuity in care; respecting resident's end-of-life wishes; offering environmental, emotional and psychosocial support; keeping family informed; promoting family understanding; and establishing a partnership with family carers by involving and guiding them in a shared decision-making. These elements improved the quality of end-of-life of both residents and their family, thus suggesting a common ground between good end-of-life care and palliative care.
CONCLUSION
The findings provide a family-driven framework to guide a sensitive and compassionate transition towards palliative care in nursing home.
Topics: Adult; Aged; Aged, 80 and over; Attitude to Death; Caregivers; Family; Female; Hospice Care; Humans; Male; Middle Aged; Nursing Homes; Palliative Care; Qualitative Research; Terminal Care
PubMed: 30969160
DOI: 10.1177/0269216319840275 -
Journal of Palliative Medicine Jun 2022Home health agencies (HHAs) are often affiliated with hospice agencies and commonly care for patients with serious illness within the Medicare program. HHAs may...
Home health agencies (HHAs) are often affiliated with hospice agencies and commonly care for patients with serious illness within the Medicare program. HHAs may therefore provide a potential opportunity to facilitate timely referral to hospice when appropriate. To determine if patients cared for by HHAs affiliated with hospice agencies experience differential hospice use and care patterns. Nationally representative cohort study. 1431 decedents in the 2002 to 2017 Medicare Current Beneficiary Survey who received home health in the last year of life in the United States. Primary independent variable was HHA hospice affiliation. Primary dependent variable was hospice enrollment; secondary dependent variables were hospice live discharge and length of stay. The 27.3% of decedents cared for by a HHA affiliated with a hospice had greater education levels and wealth and were more likely to live in the Midwest and Northeast. In adjusted models, HHA-hospice affiliated decedents had greater odds of enrolling in hospice compared to those cared for by HHAs not affiliated with a hospice, corresponding to a hospice enrollment rate of 51.0% for those cared for by HHAs affiliated with hospices versus 39.7% for HHAs not affiliated ( = 0.004). There were no differences in hospice length of stay or live discharge rate by hospice affiliation. Medicare beneficiaries cared for by HHAs affiliated with hospices are more likely to enroll in hospice at the end of life. This has implications for improving hospice access through home health incentives and models of care.
Topics: Aged; Cohort Studies; Hospice Care; Hospices; Humans; Medicare; Patient Discharge; United States
PubMed: 34964665
DOI: 10.1089/jpm.2021.0390 -
Journal of the American Medical... Feb 2022Many individuals receiving post-acute and long-term care services in nursing homes have unmet palliative and end-of-life care needs. Hospice has been the predominant... (Review)
Review
Many individuals receiving post-acute and long-term care services in nursing homes have unmet palliative and end-of-life care needs. Hospice has been the predominant approach to meeting these needs, although hospice services generally are available only to long-term care residents with a limited prognosis who choose to forego disease-modifying or curative therapies. Two additional approaches to meeting these needs are the provision of palliative care consultation through community- or hospital-based programs and facility-based palliative care services. However, access to this specialized care is limited, services are not clearly defined, and the empirical evidence of these approaches' effectiveness is inadequate. In this article, we review the existing evidence and challenges with each of these 3 approaches. We then describe a model for effective delivery of palliative and end-of-life care in nursing homes, one in which palliative and end-of-life care are seen as integral to high-quality nursing home care. To achieve this vision, we make 4 recommendations: (1) promote internal palliative and end-of-life care capacity through comprehensive training and support; (2) ensure that state and federal payment policies and regulations do not create barriers to delivering high-quality, person-centered palliative and end-of-life care; (3) align nursing home quality measures to include palliative and end-of-life care-sensitive indicators; and (4) support access to and integration of external palliative care services. These recommendations will require changes in the organization, delivery, and reimbursement of care. All nursing homes should provide high-quality palliative and end-of-life care, and this article describes some key strategies to make this goal a reality.
Topics: Hospice Care; Hospices; Humans; Nursing Homes; Palliative Care; Terminal Care
PubMed: 34953767
DOI: 10.1016/j.jamda.2021.11.027 -
Journal of Palliative Medicine Sep 2022Nursing home (NH) residents are vulnerable to increased mortality after a natural disaster such as hurricanes but the specific vulnerability of NH residents on hospice...
Nursing home (NH) residents are vulnerable to increased mortality after a natural disaster such as hurricanes but the specific vulnerability of NH residents on hospice and the impact on admission to hospice are unknown. Exposure to Hurricane Irma (2017) was used to evaluate increased mortality among Florida NH residents by hospice status compared with the same time period in a nonhurricane year. Difference in hospice utilization rates poststorm for short- and long-stay NH residents was also examined. Subject were all Florida NH residents of age 65 years and older utilizing fee-for-service Medicare claims data exposed to Hurricane Irma in 2017 compared with a control group of residents residing at the same NHs in 2015. Mortality rates were calculated by hospice status, rates of hospice enrollment, and the corresponding odds ratios (ORs). Hurricane exposure was associated with an increase in mortality 30 days poststorm (OR = 1.12, 95% confidence interval [CI]: 1.00-1.26) but not 90 days poststorm (OR = 1.02, 95% CI: 0.95-1.10) for residents on hospice. For the rate of hospice enrollment poststorm among residents previously not on hospice, there was an increase in odds of enrollment among long-stay residents in 30 days (OR = 1.15, 95% CI: 1.02-1.23) and 90 days (OR = 1.12, 95% CI: 1.05-1.20) but not short-stay residents within 30 (OR = 1.02, 95% CI: 0.91-1.15) and 90 days (OR = 1.07, 95% CI: 0.99-1.15). Mortality in NH residents on hospice care increased in the aftermath of Hurricane Irma. In addition, NH residents not on hospice were more likely to be referred to hospice in the 30 days after the storm.
Topics: Aged; Cyclonic Storms; Hospice Care; Hospices; Humans; Medicare; Nursing Homes; Retrospective Studies; United States
PubMed: 35325566
DOI: 10.1089/jpm.2021.0475 -
Journal of Palliative Medicine Feb 2023There is limited evidence regarding the challenges of providing hospice care to those dying at home during the COVID-19 pandemic. To describe the challenges of home...
There is limited evidence regarding the challenges of providing hospice care to those dying at home during the COVID-19 pandemic. To describe the challenges of home hospice care and the specific types of disruptions in care processes experienced by patients and families. Qualitative study of the electronic medical record notes of a large New York City (NYC) home-based primary care program. Subjects were 58 patients referred to hospice who died during the initial NYC COVID-19 surge from March to June 2020. We identified six domains of disruptions in home hospice care: delayed hospice enrollment, inability to conduct home visits, lack of needed supplies, communication failures, strained caregivers, and limitations of telehealth. This study provides a critical first analysis of disruptions in home hospice care that can feasibly be addressed and must be prioritized by hospices throughout the ongoing pandemic and in advance of future emergencies.
Topics: Humans; Hospice Care; Hospices; Pandemics; COVID-19; Home Care Services
PubMed: 36394438
DOI: 10.1089/jpm.2022.0037 -
American Journal of Infection Control Jan 2022Patient-facing health care workers (HCW) experience higher rates of COVID-19 infection, particularly at the start of the COVID-19 pandemic. However, rates of COVID-19...
BACKGROUND
Patient-facing health care workers (HCW) experience higher rates of COVID-19 infection, particularly at the start of the COVID-19 pandemic. However, rates of COVID-19 among front-line home health and hospice clinicians are relatively unknown.
METHODS
Visit data from a home health care and hospice agency in New Jersey early in the pandemic was analyzed to examine COVID-19 infection rates separately for clinicians exposed to COVID-19-contagious patients, and those without exposure to known COVID-19 contagious patients.
RESULTS
Between March 5 and May 31, 2020, among home health clinicians providing in-person care, clinicians treating at least one COVID-19 contagious patient had a case rate of 0.8% compared to 15.7% for clinicians with no exposure to known COVID-19 contagious patients. Among hospice clinicians providing in-person care, those who treated at least one COVID-19 contagious patient had a case rate of 6.5%, compared to 12.9% for clinicians with no known exposure to COVID-19 contagious patients. Non-White clinicians had a higher COVID-19 case rate than White clinicians (10.9% vs 6.2%).
DISCUSSION
Lower rates of COVID-19 infection among clinicians providing care to COVID-19-contagious patients may result from greater attentiveness to infection control protocols and greater precautions in clinicians' personal lives. Greater exposure to COVID-19-contagious patients prior to patient diagnosis ("unknown exposures") may explain differences in infection rates between home health and hospice clinicians with workplace exposures.
CONCLUSION
Clinicians providing in-person care to COVID-19-contagious patients experience lower rates of COVID-19 infection than clinicians providing face-to-face care with no known exposure to COVID-19 contagious patients. Our findings suggest there was a low incidence of potential workplace infections.
Topics: COVID-19; Health Personnel; Home Care Services; Hospices; Humans; Pandemics; SARS-CoV-2
PubMed: 34606966
DOI: 10.1016/j.ajic.2021.09.022 -
Journal of Pain and Symptom Management Jul 2020Most of the 20,000 U.S. children dying of serious illnesses annually die in the hospital. It is unknown if this hospital death predominance reflects family wishes or... (Review)
Review
CONTEXT
Most of the 20,000 U.S. children dying of serious illnesses annually die in the hospital. It is unknown if this hospital death predominance reflects family wishes or systemic issues such as lack of hospice access. Hence, we need to better understand location of death preferences for children and their families.
OBJECTIVE
To better understand location of death preferences in North America, we reviewed the literature to examine the evidence for and against home death in seriously ill children (0-18 years).
METHODS
We searched English articles in PubMed, PsycINFO, and Embase published during 2000-2018 for articles related to parental, child/adolescent, and provider preference for death location and articles that correlated death location with bereavement or quality of life outcomes.
RESULTS
The search results (n = 877 articles and n = 58 abstracts of interest) were reviewed, and 34 relevant articles were identified. Parent, child, and provider preferences, bereavement outcomes, and associated factors all point to some preference for home death. These findings should be interpreted with several caveats: 1) many studies are small and prone to selection bias, 2) not all families prefer home death and some that do are not able to achieve home death due to inadequate home support, 3) studies of bereavement outcomes are lacking.
CONCLUSION
Adequate resources are needed to ensure children can die in their chosen location-be that home, hospital, or free-standing hospice. This review highlights research areas needed to better understand death location preference and programs and policies that will support home death for those that desire it.
Topics: Adolescent; Child; Family; Hospice Care; Hospices; Humans; Quality of Life; Terminal Care
PubMed: 31887402
DOI: 10.1016/j.jpainsymman.2019.12.370 -
Journal of the American Society of... Oct 2022Compared with the general Medicare population, patients with ESKD have worse quality metrics for end-of-life care, including a higher percentage experiencing...
BACKGROUND
Compared with the general Medicare population, patients with ESKD have worse quality metrics for end-of-life care, including a higher percentage experiencing hospitalizations and in-hospital deaths and a lower percentage referred to hospice. We developed a Concurrent Hospice and Dialysis Program in which patients may receive palliative dialysis alongside hospice services. The Program aims to improve access to quality end-of-life care and, ultimately, improve the experiences of patients, caregivers, and clinicians.
OBJECTIVES
We sought to describe () the Program and () enrollment and utilization characteristics of Program participants.
METHODS
We conducted a quantitative description of demographics, patient characteristics, and utilization of Program enrollees.
RESULTS
Of 43 total enrollees, 44% received at least one dialysis treatment, whereas 56% received no dialysis. The median (range) hospice length of stay was 9 (1-76) days for all participants and 13 (4-76) days for those who received at least one dialysis treatment. The average number of dialysis treatments was 3.5 (range 1-9) for hemodialysis and 19.2 (range 3-65) for peritoneal dialysis. Sixty-five percent of enrollees died at home, 23% in inpatient hospice, and 12% in a nursing facility; no patients died in the hospital.
CONCLUSIONS
Our 3-year experience with the Program demonstrated that enrollees had a longer median hospice stay than the previously reported 5-day median for patients with ESKD. Most patients received no further dialysis treatments despite the option to continue dialysis. Our experience provides evidence to support future work testing the effectiveness of such clinical programs to improve patient and utilization outcomes.
Topics: United States; Humans; Hospices; Hospice Care; Hospitalization; Terminal Care; Renal Dialysis; Retrospective Studies
PubMed: 35820784
DOI: 10.1681/ASN.2022010064