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1.
Palliat Med ; 38(5): 535-545, 2024 May.
Article in English | MEDLINE | ID: mdl-38767241

ABSTRACT

BACKGROUND: Delirium is a serious neuropsychiatric syndrome with adverse outcomes, which is common but often undiagnosed in terminally ill people. The 4 'A's test or 4AT (www.the4AT.com), a brief delirium detection tool, is widely used in general settings, but validation studies in terminally ill people are lacking. AIM: To determine the diagnostic accuracy of the 4AT in detecting delirium in terminally ill people, who are hospice inpatients. DESIGN: A diagnostic test accuracy study in which participants underwent the 4AT and a reference standard based on the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. The reference standard was informed by Delirium Rating Scale Revised-98 and tests assessing arousal and attention. Assessments were conducted in random order by pairs of independent raters, blinded to the results of the other assessment. SETTING/PARTICIPANTS: Two hospice inpatient units in Scotland, UK. Participants were 148 hospice inpatients aged ⩾18 years. RESULTS: A total of 137 participants completed both assessments. Three participants had an indeterminate reference standard diagnosis and were excluded, yielding a final sample of 134. Mean age was 70.3 (SD = 10.6) years. About 33% (44/134) had reference standard delirium. The 4AT had a sensitivity of 89% (95% CI 79%-98%) and a specificity of 94% (95% CI 90%-99%). The area under the receiver operating characteristic curve was 0.97 (95% CI 0.94-1). CONCLUSION: The results of this validation study support use of the 4AT as a delirium detection tool in hospice inpatients, and add to the literature evaluating methods of delirium detection in palliative care settings. TRIAL REGISTRY: ISCRTN 97417474.


Subject(s)
Delirium , Inpatients , Humans , Delirium/diagnosis , Male , Female , Aged , Middle Aged , Aged, 80 and over , Hospice Care , Terminally Ill , Sensitivity and Specificity , Hospices , Reproducibility of Results , Adult
2.
Inquiry ; 61: 469580241249435, 2024.
Article in English | MEDLINE | ID: mdl-38742776

ABSTRACT

In the context of an aging population, the concept of peaceful end-of-life care has gained increasing significance as an essential component of individuals' fundamental well-being. This underscores the importance of researching and developing hospice care facilities and service systems dedicated to providing a tranquil resting environment. This study focuses on selected hospice care buildings, examining their service model evolution and architectural design. Through case analyses, it explores contemporary hospice care architecture, identifying various types and spatial design features that cater to the end-of-life needs of individuals. The findings guide the design of hospice care buildings in China, emphasizing patient-living areas, medical care zones, and auxiliary functional spaces. This comprehensive approach aims to enhance terminally ill patients' comfort, serenity, and dignity. Moreover, it aims to provide emotional and post-funeral support to terminally ill patients' families.


Subject(s)
Facility Design and Construction , Hospice Care , Humans , Hospice Care/organization & administration , China , Hospices/organization & administration , Terminal Care
3.
JAMA Netw Open ; 7(5): e2411520, 2024 May 01.
Article in English | MEDLINE | ID: mdl-38753329

ABSTRACT

Importance: Transitions in care settings following live discharge from hospice care are burdensome for patients and families. Factors contributing to risk of burdensome transitions following hospice discharge are understudied. Objective: To identify factors associated with 2 burdensome transitions following hospice live discharge, as defined by the Centers for Medicare & Medicaid Services. Design, Setting, and Participants: This population-based retrospective cohort study included a 20% random sample of Medicare fee-for-service beneficiaries using 2014 to 2019 Medicare claims data. Data were analyzed from April 22, 2023, to March 4, 2024. Exposure: Live hospice discharge. Main Outcomes and Measures: Multivariable logistic regression examined associations among patient, health care provision, and organizational characteristics with 2 burdensome transitions after live hospice discharge (outcomes): type 1, hospice discharge, hospitalization within 2 days, and hospice readmission within 2 days; and type 2, hospice discharge, hospitalization within 2 days, and hospital death. Results: This study included 115 072 Medicare beneficiaries discharged alive from hospice (mean [SD] age, 84.4 [6.6] years; 71892 [62.5%] female; 5462 [4.8%] Hispanic, 9822 [8.5%] non-Hispanic Black, and 96 115 [83.5%] non-Hispanic White). Overall, 10 381 individuals (9.0%) experienced a type 1 burdensome transition and 3144 individuals (2.7%) experienced a type 2 burdensome transition. In adjusted models, factors associated with higher odds of burdensome transitions included identifying as non-Hispanic Black (type 1: adjusted odds ratio [aOR], 1.47; 95% CI, 1.36-1.58; type 2: aOR, 1.70; 95% CI, 1.51-1.90), hospice stays of 7 days or fewer (type 1: aOR, 1.13; 95% CI, 1.06-1.21; type 2: aOR, 1.71; 95% CI, 1.53-1.90), and care from a for-profit hospice (type 1: aOR, 1.78; 95% CI, 1.62-1.96; type 2: aOR, 1.32; 95% CI, 1.15-1.52). Nursing home residence (type 1: aOR, 0.66; 95% CI, 0.61-0.72; type 2: aOR, 0.47; 95% CI, 0.40-0.54) and hospice stays of 180 days or longer (type 1: aOR, 0.63; 95% CI, 0.59-0.68; type 2: aOR, 0.60; 95% CI, 0.52-0.69) were associated with lower odds of burdensome transitions. Conclusion and Relevance: This retrospective cohort study of burdensome transitions following live hospice discharge found that non-Hispanic Black race, short hospice stays, and care from for-profit hospices were associated with higher odds of experiencing a burdensome transition. These findings suggest that changes to clinical practice and policy may reduce the risk of burdensome transitions, such as hospice discharge planning that is incentivized, systematically applied, and tailored to needs of patients at greater risk for burdensome transitions.


Subject(s)
Hospice Care , Hospitalization , Medicare , Patient Discharge , Patient Readmission , Humans , Female , Male , United States , Patient Discharge/statistics & numerical data , Patient Readmission/statistics & numerical data , Retrospective Studies , Aged, 80 and over , Aged , Hospice Care/statistics & numerical data , Medicare/statistics & numerical data , Hospitalization/statistics & numerical data , Hospital Mortality , Hospices/statistics & numerical data
4.
Palliat Med ; 38(5): 593-601, 2024 May.
Article in English | MEDLINE | ID: mdl-38767240

ABSTRACT

BACKGROUND: Recommendations state that multidisciplinary team expertise should be utilised for more accurate survival predictions. How the multidisciplinary team discusses prognoses during meetings and how they reference time, is yet to be explored. AIM: To explore how temporality is conveyed in relation to patients' prognoses during hospice multidisciplinary team meetings. DESIGN: Video-recordings of 24 hospice multidisciplinary team meetings were transcribed and analysed using Conversation Analysis. SETTING/PARTICIPANTS: A total of 65 staff participating in multidisciplinary team meetings in a UK hospice from May to December 2021. RESULTS: Team members conveyed temporality in three different ways. (i) Staff stated that a patient was dying as part of the patient's current health status. These formulations did not include a time reference per se but described the patient's current situation (as dying) instead. (ii) Staff used specific time period references where another specific reference had been provided previously that somehow constrained the timeframe. In these cases, the prognosis would conflict with other proposed care plans. (iii) Staff members used unspecific time period references where the reference appeared vague and there was greater uncertainty about when the patient was expected to die. CONCLUSIONS: Unspecific time period references are sufficient for achieving meaningful prognostic talk in multidisciplinary teams. In-depth discussion and accurate prediction of patient prognoses are not deemed a priority nor a necessity of these meetings. Providing precise predictions may be too difficult due to uncertainty and accountability. The lack of staff pursuing more specific time references implies shared knowledge between staff and a context-specific use of prognostic estimates.


Subject(s)
Patient Care Team , Humans , Prognosis , Female , Male , United Kingdom , Time Factors , Interdisciplinary Communication , Hospice Care/organization & administration , Middle Aged , Hospices , Communication , Adult
5.
JAMA ; 331(19): 1625, 2024 05 21.
Article in English | MEDLINE | ID: mdl-38662359

ABSTRACT

In this narrative medicine essay, a retired physician describes the kindness, companionship, and skill of the hospice workers who helped his wife and him prepare for her death.


Subject(s)
Hospice Care , Humans , Hospices
6.
BMC Palliat Care ; 23(1): 111, 2024 Apr 30.
Article in English | MEDLINE | ID: mdl-38689262

ABSTRACT

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.


Subject(s)
Hospice Care , Neoplasms , Terminal Care , Humans , Male , Female , Neoplasms/therapy , Retrospective Studies , Middle Aged , Aged , Terminal Care/methods , Terminal Care/standards , Terminal Care/statistics & numerical data , Republic of Korea , Cohort Studies , Hospice Care/statistics & numerical data , Hospice Care/methods , Hospice Care/standards , Adult , Aged, 80 and over , Hospices/statistics & numerical data , Hospices/methods
7.
BMC Health Serv Res ; 24(1): 491, 2024 Apr 20.
Article in English | MEDLINE | ID: mdl-38643136

ABSTRACT

BACKGROUND: Hospice care professionals often experience trauma patient deaths and multiple patient deaths in a short period of time (more so than other nurses). This repeated exposure to the death process and the death of patients leads to greater psychological pressure on hospice care professionals. But at present, people pay more attention to the feelings and care burden of the family members of dying patients but pay less attention to medical staff. Thus, this study aimed to develop a scale on the burden of care for hospice care providers and assess the coping capacity of hospice professionals. Raising awareness of the psychological burden of hospice professionals. METHODS: Through a literature review, research group discussion, Delphi method and a pre-survey of professional coping skills among nurses, 200 hospice professionals who had received training in hospice care from pilot institutions engaged in or providing hospice care were selected for investigation. Cronbach's α coefficient and split-half reliability were used to test the internal consistency of the scale, and content validity and explore factor analysis (EFA) were used to test the construct validity of the scale. RESULTS: Two rounds of Delphi methods were carried out, and the effective recovery rate was 100%. The expert authority coefficients of the two rounds were 0.838 and 0.833, respectively. The Kendall's W coefficient of experts in the first round was 0.121 ~ 0.200 (P < 0.05), and the Kendall's W coefficient of the second round was 0.115-0.136 (P < 0.05), indicating a good level of expert coordination. The final survey scale for the care burden of hospice professionals included four dimensions-working environment (9 items), professional roles (8 items), clinical nursing (9 items) and psychological burden (7 items)-with a total of 33 items. The total Cronbach's α coefficient of the scale was 0.963, and the Cronbach's α coefficients of the working environment, professional roles, clinical nursing and psychological burden dimensions were 0.920, 0.889, 0.936 and 0.910, respectively. The total split-half reliability of the scale was 0.927, and the split-half reliability of each dimension was 0.846, 0.817, 0.891, and 0.832. The content validity of the scale items ranged from 0.90 to 1.00. Exploratory factor analysis revealed 5 common factors, with a total cumulative contribution rate of 68.878%. The common degree of each item in the scale was > 0.4, and the factor loading of each item was also > 0.4. CONCLUSION: The scale is an open-access, short, easy-to-administer scale. And which for assessing hospice care burden among hospice professionals developed in this study demonstrated strong reliability and validity. This tool can serve as a dependable instrument for evaluating the burden of hospice care for terminally ill patients by professionals in the hospice setting.


Subject(s)
Hospice Care , Hospices , Humans , Adaptation, Psychological , China , Psychometrics , Reproducibility of Results , Surveys and Questionnaires
9.
BMC Palliat Care ; 23(1): 105, 2024 Apr 20.
Article in English | MEDLINE | ID: mdl-38643167

ABSTRACT

BACKGROUND: The Hospice and Palliative Care Act of 2015 aimed at developing and regulating the provision of palliative care (PC) services in Germany. As a result of the legal changes, people with incurable diseases should be enabled to experience their final stage of life including death according to their own wishes. However, it remains unknown whether the act has impacted end-of-life care (EoLC) in Germany. OBJECTIVE: The present study examined trends in EoLC indicators for patients who died between 2016 and 2020, in the context of Lower Saxony, Germany. METHODS: Repeated cross-sectional analysis was conducted on data from the statutory health insurance fund AOK Lower Saxony (AOK-LS), referring to the years 2016-2020. EoLC indicators were: (1) the number of patients receiving any form of outpatient PC, (2) the number of patients receiving generalist outpatient PC and (3) specialist outpatient PC in the last year of life, (4) the onset of generalist outpatient PC and (5) the onset of specialist outpatient PC before death, (6) the number of hospitalisations in the 6 months prior to death and (7) the number of days spent in hospital in the 6 months prior to death. Data for each year were analysed descriptively and a comparison between 2016 and 2020 was carried out using t-tests and chi-square tests. RESULTS: Data from 160,927 deceased AOK-LS members were analysed. The number of patients receiving outpatient PC remained almost consistent over time (2016 vs. 2020 p = .077). The number of patients receiving generalist outpatient PC decreased from 28.4% (2016) to 24.5% (2020; p < .001), whereas the number of patients receiving specialist outpatient PC increased from 8.5% (2016) to 11.2% (2020; p < .001). The onset of generalist outpatient PC moved from 106 (2016) to 93 days (2020; p < .001) before death, on average. The onset of specialist outpatient PC showed the reverse pattern (2016: 55 days before death; 2020: 59 days before death; p = .041). CONCLUSION: Despite growing needs for PC at the end of life, the number of patients receiving outpatient PC did not increase between 2016 and 2020. Furthermore, specialist outpatient PC is being increasingly prescribed over generalist outpatient PC. Although the early initiation of outpatient PC has been proven valuable for the majority of people at the end of life, generalist outpatient PC was not initiated earlier in the disease trajectory over the study period, as was found to be true for specialist outpatient PC. Future studies should seek to determine how existing PC needs can be optimally met within the outpatient sector and identify factors that can support the earlier initiation of especially generalist outpatient PC. TRIAL REGISTRATION: The study "Optimal Care at the End of Life" was registered in the German Clinical Trials Register (DRKS00015108; 22 January 2019).


Subject(s)
Hospices , Terminal Care , Humans , Cross-Sectional Studies , Palliative Care , Germany , Death , Insurance, Health
10.
Palliat Med ; 38(4): 447-456, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38634231

ABSTRACT

BACKGROUND: Delirium is a complex condition, stressful for all involved. Although highly prevalent in palliative care settings, it remains underdiagnosed and associated with poor outcomes. Guideline-adherent delirium care may improve its detection, assessment and management. AIM: To inform a future definitive study that tests whether an implementation strategy designed to improve guideline-adherent delirium care in palliative care settings improves patient outcomes (reduced proportion of in-patient days with delirium). DESIGN: With Patient Involvement members, we conducted a feasibility study to assess the acceptability of and engagement with the implementation strategy by hospice staff (intervention), and whether clinical record data collection of process (e.g. guideline-adherent delirium care) and clinical outcomes (evidence of delirium using a validated chart-based instrument;) pre- and 12-weeks post-implementation of the intervention would be possible. SETTING/PARTICIPANTS: In-patient admissions in three English hospices. RESULTS: Between June 2021 and December 2022, clinical record data were extracted from 300 consecutive admissions. Despite data collection during COVID-19, target clinical record data collection (n = 300) was achieved. Approximately two-thirds of patients had a delirium episode during in-patient stay at both timepoints. A 6% absolute reduction in proportion of delirium days in those with a delirium episode was observed. Post-implementation improvements in guideline-adherent metrics include: clinical delirium diagnosis 15%-28%; delirium risk assessment 0%-16%; screening on admission 7%-35%. CONCLUSIONS: Collection of data on delirium outcomes and guideline-adherence from clinical records is feasible. The signal of patient benefit supports formal evaluation in a large-scale study.


Subject(s)
Delirium , Hospices , Humans , Feasibility Studies , Palliative Care , Hospitalization
11.
West J Emerg Med ; 25(2): 213-220, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38596921

ABSTRACT

Background: Hospice and palliative medicine (HPM) is a board-certified subspecialty within emergency medicine (EM), but prior studies have shown that EM residents do not receive sufficient training in HPM. Experts in HPM-EM created a consensus list of competencies for HPM training in EM residency. We evaluated how the HPM competencies integrate within the American Board of Emergency Medicine Milestones, which include the Model of the Clinical Practice of Emergency Medicine (EM Model) and the knowledge, skills, and abilities (KSA) list. Methods: Three emergency physicians independently mapped the HPM-EM competencies onto the 2019 EM Model items and the 2021 KSAs. Discrepancies were resolved by a fourth independent reviewer, and the final mapping was reviewed by all team members. Results: The EM Model included 78% (18/23) of the HPM competencies as a direct match, and we identified recommended areas for incorporating the other five. The KSAs included 43% (10/23). Most HPM competencies included in the KSAs mapped onto at least one level B (minimal necessary for competency) KSA. Three HPM competencies were not clearly included in the EM Model or in the KSAs (treating end-of-life symptoms, caring for the imminently dying, and caring for patients under hospice care). Conclusion: The majority of HPM-EM competencies are included in the current EM Model and KSAs and correspond to knowledge needed to be competent in EM. Programs relying on the EM Milestones to plan their curriculums may miss training in symptom management and care for patients at the end of life or who are on hospice.


Subject(s)
Emergency Medicine , Hospice Care , Hospices , Internship and Residency , Palliative Medicine , Humans , United States , Palliative Medicine/education , Palliative Care , Education, Medical, Graduate , Emergency Medicine/education , Clinical Competence
12.
Int J Palliat Nurs ; 30(4): 180-188, 2024 Apr 02.
Article in English | MEDLINE | ID: mdl-38630645

ABSTRACT

BACKGROUND: Research exploring nurse-parent relationships in children's hospices is rare. AIM: To investigate how children's hospice nurses manage emotional labour and professional integrity in their long-term relationships with parents. METHODS: A purposive sample of six children's nurses, from hospices across England, recorded audio diaries and participated in telephone interviews. Narratives were thematically analysed. FINDINGS: Three overarching, cross-cutting themes were identified-purposeful positioning; balancing personability and professionalism; coping with and counterbalancing emotional labour. All themes were indicative of and/or built upon emotional intelligence constructs, such as self-awareness, self-regulation, appropriate (managed) empathy, social skills and intrinsic motivation. Innate features of children's hospice work were important for perpetuating intrinsic motivation and satisfaction. CONCLUSION: This study provided an insight into the management of emotional labour and professional integrity by experienced children's hospice nurses. The identification of emotional intelligence skills merits further exploration in this environment, as well as other children's palliative care settings.


Subject(s)
Hospice Care , Hospice and Palliative Care Nursing , Hospices , Child , Humans , Attitude of Health Personnel , Palliative Care , Emotions
13.
J Gerontol Nurs ; 50(4): 11-15, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38569104

ABSTRACT

PURPOSE: To gather sufficient qualitative data to create an intervention that would prevent direct care workers (DCWs) from sending residents with do-not-hospitalize (DNH) orders to the hospital. METHOD: This was a qualitative study with eight participants that included a descriptive survey followed by semi-structured interviews. RESULTS: DCWs were unfamiliar with DNH orders and their thinking on end-of-life care was binary (hospice or hospital) and protocol driven. However, supportive leaders were able to help DCWs problem-solve these complicated scenarios. Results were mixed on whether having a RN on site was helpful. CONCLUSION: DCWs may benefit from having access to a nurse with palliative care experience when making decisions about residents with DNH orders. [Journal of Gerontological Nursing, 50(4), 11-15.].


Subject(s)
Assisted Living Facilities , Hospices , Humans , Hospitalization , Advance Directives , Nursing Homes
14.
BMJ Open ; 14(4): e083400, 2024 Apr 03.
Article in English | MEDLINE | ID: mdl-38569717

ABSTRACT

OBJECTIVE: The purpose of this study was to evaluate the inclination and determinants influencing the selection of hospice care service institutions among elderly individuals in China. DESIGN: The study conducted has a cross-sectional design. SETTING: The study was conducted at four urban community centres in Wuhu, Anhui Province, China. PARTICIPANTS: The sample consisted of 642 older adults, with ages ranging from 60 to over (mean age=71.03 years, SD=7.18). METHOD: This study, based on the Anderson model, developed a questionnaire after conducting a preliminary survey and engaging in several group discussions. The final questionnaire encompassed the basic information, health status, attitude towards hospice care, choice of hospice care institutions and reasons of the older people. A regional population study was conducted using the Logistic regression model to estimate the ORs (OR) of influencing factors selected by hospice services. RESULTS: 38.5% of respondents expressed their willingness to receive hospice care, while 22.3% were unwilling and 39.3% felt ambivalent towards it. The acceptance rate of older people in hospice care increases with higher levels of education and monthly income. 47.0% of older people opted for hospice care in a general hospital ward, indicating that demand for hospice services among older people in Wuhu City is primarily focused on such wards. The univariate analysis revealed significant differences in the willingness of older individuals to accept hospice care services based on gender, age, educational attainment and income levels. Regardless of the location of hospice care, older men had a lower likelihood of being willing to use hospice services compared with older women. The proportion of older women choosing a hospice ward or general hospital was 53.8%, which was higher than that of older men at 42.0%. The proportion of older men choosing a community health service institution was 31.6%, higher than 23.3% of women. The educational level differences significantly influence the older people's inclination towards receiving hospice care. CONCLUSION: With the ageing population of Wuhu City on the rise, there is an increasing demand for hospice services. In their final journey, older individuals require multilevel hospice care services, which necessitates equipping general hospitals with hospice wards and using community health service centres to meet their specific needs.


Subject(s)
Hospice Care , Hospices , Male , Humans , Female , Aged , Cross-Sectional Studies , Income , Surveys and Questionnaires , China
15.
J Palliat Med ; 27(4): 515-520, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38574330

ABSTRACT

Introduction: Therapeutic alliance (TA), or the extent to which patients feel a sense of caring and trust with their physician, may have an impact on health care utilization. We sought to determine if TA is associated with: (1) emergency department (ED) visits within 30 days of death and (2) hospice enrollment. Methods and Materials: This is a secondary analysis of data from a randomized clinical trial. We used restricted cubic splines to assess the relationship between TA scores and health care utilization. Results: Six hundred seventy-two patients were enrolled in the study, with 331 (49.3%) dying within 12 months. Patients with higher TA were less likely to have an ED visit in the last 30 days of life, but there was no evidence of a relationship between TA and enrollment in hospice. Conclusions: Higher TA was associated with decreased ED visits within 30 days of death. There was no association between TA and rates of hospice enrollment. Clinical Registration Number: NCT02712229.


Subject(s)
Hospice Care , Hospices , Neoplasms , Therapeutic Alliance , Humans , Neoplasms/therapy , Emergency Service, Hospital , Patient Acceptance of Health Care
16.
BMC Palliat Care ; 23(1): 69, 2024 Mar 09.
Article in English | MEDLINE | ID: mdl-38461270

ABSTRACT

BACKGROUND: Several studies deal with the question of what constitutes a "satisfactory death". A smaller number of studies deal with unsatisfactory dying processes. And only a few shed light on unsatisfactory deaths that take place in hospices and palliative care units, which see themselves as places conducive to a "good" death. What also remains largely undiscussed are the ethical aspects that accompany the observation of an unsatisfactory course of death. METHOD: The research was carried out as an exploratory and qualitative study. The data collection and analysis were based on the methods of the "grounded theory". RESULTS: Notions of a bad death are articulated here, though hardly by the affected persons and their relatives themselves, but rather by the professionals. Principally, descriptions of unsatisfactory dying processes refer to deficient success in symptom control, whereby the principle of autonomy is of particular importance. The focus here is not only on the needs of patients, but also on the needs of staff. The manifestation of such notions is related to the requirements arising from a practice that apparently evokes a need for accountability in the form of communicative reassurance. CONCLUSION: An idealised definition of "dying well" is in danger of losing sight of the contextual specifics of the practice involved, which can lead to ethically problematic situations.


Subject(s)
Hospice Care , Hospices , Humans , Palliative Care/methods , Qualitative Research , Patients
17.
BMC Palliat Care ; 23(1): 81, 2024 Mar 28.
Article in English | MEDLINE | ID: mdl-38539136

ABSTRACT

BACKGROUND: Volunteers have always been integral to hospice and palliative care. However, their roles have been left relatively undefined and broad. AIM: This study aims to examine the role of hospice volunteers in German inpatient hospice and palliative care. The question we seek to answer is: What do hospice volunteers contribute to everyday life in inpatient hospice and palliative care units? METHODS: We undertook a multicenter, on-site qualitative interview study, utilizing problem-centered interviews with 16 volunteers from five inpatient hospice units and one hospital palliative care unit. Interviews were analyzed using grounded theory. RESULTS: Analysis of the interviews revealed three typical characteristics of how hospice volunteers' describe their own role: (1) performing small acts of kindness, (2) creating a family-like atmosphere, (3) expecting emotional experiences. A common theme across all categories is the emphasis on spontaneous actions and personal experiences. The process of dying becomes an experience interpreted by volunteers as enriching, as a gift, as a "teacher". CONCLUSION: Granting hospice volunteers freedom to act spontaneously and intuitively benefits hospice and palliative care delivery. Organizations should leave sufficient room for spontaneity in order to involve volunteers effectively. Open and unstandardized roles facilitate dynamic work practices.


Subject(s)
Hospice Care , Hospices , Humans , Palliative Care/psychology , Inpatients , Hospice Care/psychology , Volunteers/psychology , Qualitative Research
18.
Soc Sci Med ; 348: 116781, 2024 May.
Article in English | MEDLINE | ID: mdl-38547806

ABSTRACT

Experiencing the death of a family member and providing end-of-life caregiving can be stressful on families - this is well-documented in both the caregiving and bereavement literatures. Adopting a linked-lived theoretical perspective, exposure to the death and dying of one family member could be conceptualized as a significant life stressor that produces short and long-term health consequences for surviving family members. This study uses familial-linked administrative records from the Utah Population Database to assess how variations in family hospice experiences affect mortality risk for surviving spouses and children. A cohort of hospice decedents living in Utah between 1998 and 2016 linked to their spouses and adult children (n = 37,271 pairs) provides an ideal study population because 1) hospice typically involves family members in the planning and delivery of end-of-life care, and 2) hospice admission represents a conscious awareness and acknowledgment that the decedent is entering an end-of-life experience. Thus, hospice duration (measured as the time between admission and death) is a precise measure of the family's exposure to an end-of-life stressor. Linking medical records, vital statistics, and other administrative microdata to describe decedent-kin pairs, event-history models assessed how hospice duration and characteristics of the family, including familial network size and coresidence with the decedent, were associated with long-term mortality risk of surviving daughters, sons, wives (widows), and husbands (widowers). Longer hospice duration increased mortality risk for daughters and husbands, but not sons or wives. Having other family members in the state was protective, and living in the same household as the decedent prior to death was a risk factor for sons. We conclude that relationship type and sex likely modify the how of end-of-life stressors (i.e., potential caregiving demands and bereavement experiences) affect health because of normative gender roles. Furthermore, exposure to dementia deaths may be particularly stressful, especially for women.


Subject(s)
Caregivers , Humans , Female , Male , Aged , Caregivers/psychology , Caregivers/statistics & numerical data , Middle Aged , Utah/epidemiology , Terminal Care/psychology , Terminal Care/statistics & numerical data , Aged, 80 and over , Hospice Care/statistics & numerical data , Hospice Care/psychology , Adult , Family/psychology , Mortality/trends , Bereavement , Hospices/statistics & numerical data , Risk Factors , Stress, Psychological/psychology , Cohort Studies
20.
Home Healthc Now ; 42(2): 78-83, 2024.
Article in English | MEDLINE | ID: mdl-38437040

ABSTRACT

North Carolina home health and hospice agencies are experiencing serious shortages of registered nurses (RNs), particularly in rural areas. These shortages can negatively impact patients and families by delaying access to care and possibly resulting in avoidable hospitalizations/rehospitalizations. Many home health and hospice agencies do not hire newly graduated RNs due to limited patient care experience, limited or no opportunity for home health/hospice clinical rotations, and the autonomous nature of providing care in the home. The Hospice and Home Health Foundation of North Carolina was awarded a $468,196 3-year grant, and, in collaboration with key stakeholders, developed a model for clinical rotation experiences in home health and hospice settings for RN students as well as an onboarding model for newly graduated RNs. Seven home health and hospice project partner agencies were selected to pilot the models. This article describes program implementation and evaluation. We used a survey method and site visit interviews to assess program effectiveness. Students provided positive feedback about the clinical rotation and more than 80% indicated their clinical rotation met "most" or "almost all" of their learning needs. The focus group interviews provided substantive anecdotal examples to validate the survey results.


Subject(s)
Awards and Prizes , Hospices , Humans , Focus Groups , Hospitalization , North Carolina
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