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"Hospices"
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Unique characteristics of informal hospice cancer caregiving
Purpose
The purpose of this study was to describe the unique characteristics of informal hospice cancer caregiving.
Methods
Researchers conducted a secondary analysis of data drawn from a randomized clinical trial of an informal hospice caregiving intervention (
N
= 348). Demographic characteristics and measures of the informal caregiving experience of hospice patients and their informal caregivers were compared based on the patient’s diagnosis using chi-square tests for association of categorical variables and
t
tests for continuous variables.
Results
Informal caregivers of cancer patients differed from their non-cancer counterparts in a number of respects including patient age, caregiver age, patient residence, relationship between patient and caregiver, amount and duration of care provided, likelihood to incur out-of-pocket expenses related to patient care, caregiver problem-solving style, and impact on caregiver daily schedule. There were no statistically significant differences between cancer and non-cancer caregivers in terms of gender, race, employment status, anxiety, and quality of life.
Conclusions
While cancer and non-cancer caregivers are similar in many respects, a number of unique features characterize the informal hospice cancer caregiving experience. Attention to these unique features will allow hospice providers to tailor supportive care interventions to better address cancer caregivers’ needs.
Journal Article
Providing psychological support to people impacted by terminal illness: A mixed methods study of hospice staff perceived competence, confidence and training needs
Psychological distress is common amongst people with a terminal illness. While mental health specialists have a role in assessment and management of those with complex psychological problems, hospice clinicians provide psychological support to most patients and families.
To describe current practices relating to the provision of psychological support by hospice clinicians, and to explore perceived competence, confidence and training needs in relation to this aspect of their role.
We used a parallel mixed methods research design. An online questionnaire consisting of closed and free-text questions was emailed to 273 hospices in the UK and the Republic of Ireland between May and June 2023.
Participants included nurses, doctors, and allied health professionals employed by a hospice. Quantitative data was analysed descriptively using SPSS 27, and free-text data was analysed thematically guided by the framework method.
151 hospice staff completed the questionnaire. Most (81%) reported that they regularly screen for psychological distress, but clinical judgement, as opposed to use of a validated screening tool, was most common. Respondents reported confidence and competence in many areas. Overall, 72% strongly agreed they were willing to explore difficult subject matter. However, only 25% strongly agreed they were confident in differentiating level of psychological need, and 36% reported they could not arrange appropriate psychological support when needed. Almost all (95%) agreed that training in psychological support would enhance their practice. Individual and family factors such as denial, communication challenges and family conflict were barriers to providing psychological support. Systemic factors were time constraints, prioritisation of physical symptoms and limited access to mental health specialists.
Hospice staff report that they are confident in providing basic psychological support. However, there was a desire for further training in this aspect of care. Clearer guidance on referral criteria for specialist psychological support is warranted.
Journal Article
Differences in end-of-life care patterns between types of hospice used for cancer patients: a retrospective cohort study
Background
In response to the rapid aging population and increasing number of cancer patients, discussions on dignified end-of-life (EoL) decisions are active around the world. Therefore, this study aimed to identify the differences in EoL care patterns between types of hospice used for cancer patients.
Methods
In this population-based cohort study, the Korean National Health Insurance Service cohort data containing all registered cancer patients who died between 2017 and 2021 were used. A total of 408,964 individuals were eligible for analysis. The variable of interest, the type of hospice used in the 6 months before death, was classified as follows: (1) Non-hospice users; (2) Hospital-based hospice single users; (3) Home-based hospice single users; (4) Combined hospice users. The outcomes were set as patterns of care, including intense care and supportive care. To identify differences in care patterns between hospice types, a generalized linear model with zero-inflated negative binomial distribution was applied.
Results
Hospice enrollment was associated with less intense care and more supportive care near death. Notably, those who used combined hospice care had the lowest probability and frequency of receiving intense care (aOR: 0.18, 95% CI: 0.17–0.19, aRR: 0.47, 95% CI: 0.44–0.49), while home-based hospice single users had the highest probability and frequency of receiving supportive care (Prescription for narcotic analgesics, aOR: 2.95, 95% CI: 2.69–3.23, aRR: 1.45, 95% CI: 1.41–1.49; Mental health care, aOR: 3.40, 95% CI: 3.13–3.69, aRR: 1.35, 95% CI: 1.31–1.39).
Conclusion
Our findings suggest that although intense care for life-sustaining decreases with hospice enrollment, QoL at the EoL actually improves with appropriate supportive care. This study is meaningful in that it not only offers valuable insight into hospice care for terminally ill patients, but also provides policy implications for the introduction of patient-centered community-based hospice services.
Journal Article
Increased Access to Palliative Care and Hospice Services: Opportunities to Improve Value in Health Care
Context: A small proportion of patients with serious illness or multiple chronic conditions account for the majority of health care spending. Despite the high cost, evidence demonstrates that these patients receive health care of inadequate quality, characterized by fragmentation, overuse, medical errors, and poor quality of life. Methods: This article examines data demonstrating the impact of the U.S. health care system on clinical care outcomes and costs for the sickest and most vulnerable patients. It also defines palliative care and hospice, synthesizes studies of the outcomes of palliative care and hospice services, reviews variables predicting access to palliative care and hospice services, and identifies those policy priorities necessary to strengthen access to high-quality palliative care. Findings: Palliative care and hospice services improve patient-centered outcomes such as pain, depression, and other symptoms; patient and family satisfaction; and the receipt of care in the place that the patient chooses. Some data suggest that, compared with the usual care, palliative care prolongs life. By helping patients get the care they need to avoid unnecessary emergency department and hospital stays and shifting the locus of care to the home or community, palliative care and hospice reduce health care spending for America's sickest and most costly patient populations. Conclusions: Policies focused on enhancing the palliative care workforce, investing in the field's science base, and increasing the availability of services in U.S. hospitals and nursing homes are needed to ensure equitable access to optimal care for seriously ill patients and those with multiple chronic conditions.
Journal Article
Hospices’ Enrollment Policies May Contribute To Underuse Of Hospice Care In The United States
Hospice use in the United States is growing, but little is known about barriers that terminally ill patients may face when trying to access hospice care. This article reports the results of the first national survey of the enrollment policies of 591 US hospices. The survey revealed that 78 percent of hospices had at least one enrollment policy that may restrict access to care for patients with potentially high-cost medical care needs, such as chemotherapy or total parenteral nutrition. Smaller hospices, for-profit hospices, and hospices in certain regions of the country consistently reported more limited enrollment policies. We observe that hospice providers' own enrollment decisions may be an important contributor to previously observed underuse of hospice by patients and families. Policy changes that should be considered include increasing the Medicare hospice per diem rate for patients with complex needs, which could enable more hospices to expand enrollment. [PUBLICATION ABSTRACT]
Journal Article
The experience of providing hospice care concurrent with cancer treatment in the VA
PurposeVeterans with advanced cancer can receive hospice care concurrently with treatments such as radiation and chemotherapy. However, variations exist in concurrent care use across Veterans Affairs (VA) medical centers (VAMCs), and overall, concurrent care use is relatively rare. In this qualitative study, we aimed to identify, describe, and explain factors that influence the provision of concurrent cancer care (defined as chemotherapy or radiation treatments provided with hospice) for veterans with terminal cancer.MethodsFrom August 2015 to April 2016, we conducted six site visits and interviewed 76 clinicians and staff at six VA sites and their contracted community hospices, including community hospices (n = 16); VA oncology (n = 25); VA palliative care (n = 17); and VA inpatient hospice and palliative care units (n = 18).ResultsThematic qualitative content analysis found three themes that influenced the provision of concurrent care: (1) clinicians and staff at community hospices and at VAs viewed concurrent care as a viable care option, as it preserved hope and relationships while patient goals are clarified during transitions to hospice; and (2) the presence of dedicated liaisons facilitated care coordination and education about concurrent care; however, (3) clinicians and staff concerns about Medicare guideline compliance hindered use of concurrent care.ConclusionsWhile concurrent care is used by a small number of veterans with advanced cancer, VA staff valued having the option available and as a bridge to hospice. Hospice staff felt concurrent care improved care coordination with VAMCs, but use may be tempered due to concerns related to Medicare compliance.
Journal Article
Associations of Hospice Disenrollment and Hospitalization With Continuous Home Care Provision
OBJECTIVES:To examine rates of hospice disenrollment and posthospice hospitalization among patients who are enrolled in hospices that provide continuous home care (CHC) (CHC hospices) compared with patients who are enrolled in hospices that do not offer CHC (non-CHC hospices).
METHODS:We performed a retrospective cohort study among Medicare fee-for-service decedents between July and December 2011, who were 66 years and older and had used hospice in their last 6 months of life. We used propensity score matching to account for potential confounding characteristics of hospices. Generalized estimating equation models were applied to estimate between CHC hospices and non-CHC hospices the associations of hospice disenrollment/hospitalization, adjusted for patient characteristics. We also conducted subgroup analyses to examine how the association might have differed by hospice size, and by the percentage of enrollees who received CHC.
RESULTS:After matching, we identified 936 pairs of CHC and non-CHC hospices, well balanced in terms of organizational characteristics. In fully adjusted models, compared with non-CHC hospices, CHC hospices had significantly lower disenrollment rates (adjusted rate ratio, 0.73; 95% confidence interval, 0.60–0.87), and lower hospitalization rates (adjusted rate ratio, 0.79; 95% confidence interval, 0.66–0.95). These associations were significantly more pronounced among larger hospices (those with >175 enrollees during study period), and among hospices in which at least 7.3% of enrollees used CHC.
CONCLUSIONS:CHC hospices had significantly lower rates of hospice disenrollment and posthospice hospitalization, suggesting CHC service available may enable higher quality of end-of-life care.
Journal Article
Pattern and characteristics of patients admitted to a hospice connected with an acute palliative care unit in a comprehensive cancer center
Purpose
Information about inpatient hospice activity is limited. No data exist about the pattern and the characteristics of advanced cancer patients admitted to a hospice connected to an acute supportive/palliative care unit (ASPCU).
Methods
Data of hospice admissions were retrieved from the database where all data were prospectively collected. The Edmonton Symptom Assessment Scale (ESAS) and the use of analgesics and adjuvant were recorded at admission (T0), 1 week (T7), 2 weeks (T14), and the day before death (T-end). The use of palliative sedation and its indication, duration, and drugs end doses used were recorded. The number of hospice deaths, discharges, and hospice staying were recorded.
Results
One hundred seventy-seven patients were admitted in 13 months. There were significant differences in total ESAS at T0 (
P
= 0.033), total ESAS being significantly lower in patients admitted from the ASPCU than those referred from other settings. The day before death (T-end), only 48 patients could be evaluated. Patients referred by a palliative care setting were more likely to be prescribed opioids at T0 (
P
= 0.0007). At T-end, there was a significant increase in the use of morphine and haloperidol (
P
< 0.05). Seventeen percent of patients died within 48 h. Only a minority of patients could be properly assessed at T-end (25%). Palliative sedation was performed in 10.1% of patients. The mean hospice staying was 16.3 (SD 21.4) days. There were no differences in mean hospice staying between patients who died in hospice or those discharged (
P
= 0.873).
Conclusion
The presence of a hospice in a comprehensive cancer center could offer a further opportunity for continuing care. Specialized palliative care may be offered to patients referred from other hospitals, home palliative care, but above all, transfer to hospice may allow a continuity of care for those patients who were initially admitted to an ASPCU for symptom control, to which anticancer therapies were withdrawn or withhold after multidisciplinary consultation. Similarly, after a proper palliative care consultation in other hospital units, patients may be referred to hospice. This process may avoid transfers to external hospices, which can prevent the continuity of care.
Journal Article
How to improve dealing with desire to die in hospice volunteers and informal caregivers
Up to 40% of severely ill patients report at least an occasional desire to die, opening up not only to professionals but also to hospice volunteers and patients' informal caregivers. Based on an existing, evaluated 2-day desire to die training for professionals, we intend to adapt the training for hospice volunteers and informal caregivers, both face-to-face and online and provide a preliminary evaluation.
Multi-method approach to (1) assess needs regarding content and form for (online) trainings for hospice volunteers and formats for informal care givers using online focus groups and (additional) individual interviews, (2) adapt existing training materials for both groups accompanied by expert discussion, and (3) pilot and evaluate the (online) trainings and formats through (online) surveys.
In an online focus group with
= 4 informal caregivers and
= 2 additional online interviews, participants reported wishes for form (e.g. short formats in plain language) and content (e.g. needs in relation to health professional and patient). The
= 6 hospice volunteers also wished for form (e.g. plain language) and content (e.g. volunteer role). Results were implemented in (a) a volunteer adaptation of the training, e.g. with target-group-specific case studies and (b) the development of an online format for informal caregivers. For evaluation, we conducted (a) 2 face-to-face trainings for hospice volunteers (
= 14 and
= 20) and (b) 2 online formats for informal caregivers (
= 7 and
= 13). Both groups benefited strongly from participation.
Hospice volunteers and informal caregivers deal with patients' desires to die - often without being adequately prepared. Through (online) trainings and formats, their awareness and self-confidence regarding desire to die can increase. It is therefore of high relevance to meet the demand for easily accessible and target group specific (online) trainings on dealing with desire to die.
Journal Article