Hospice as Experienced by LTC Nurses and Their Perception of Resident Experiences

Objectives: This study utilized qualitative methods to better understand long-term care (LTC) nursing staff’s experience with hospice services and their perceptions of resident choice to utilize hospice services, as well as understand differences LTC nurses have experienced in regards to resident deaths. Methods: Interpretative Phenomenological Analysis (IPA) was utilized to extract themes and subthemes from 10 interviews that occurred with LTC nursing staff. Content analysis was also utilized to extract one noteworthy concept, which was a comparison of two resident deaths, with and without the utilization of hospice services.Results: Three main themes were extracted from the data: LTC nursing participant’s positive view of hospice, their perception that residents view hospice very negatively, and why residents choose to utilize hospice services. Participants also identified aspects of a “bad” or “good” death, with clear relationships noted when using hospice services. Conclusions: Findings identified a difference between the LTC nursing staff’s positive view of hospice and their belief that their residents view hospice services very negatively. According to these nurses’ experiences, to most residents, hospice meant something rather negative and feared. Clinical Implications: An intervention providing information about hospice services for LTC resident population may increase the percentage of older adults who utilize hospice services.     

Is Hospice Associated with Improved End‐of‐Life Care in Nursing Homes and Assisted Living Facilities?

OBJECTIVES: To examine whether hospice enrollment for nursing home (NH) and residential care/assisted living (RC/AL) residents near the end of life is associated with symptoms and symptom management, personal care, spiritual support, and family satisfaction. DESIGN: Structured, retrospective telephone interviews with family and staff who attended to NH and RC/AL residents in the last month of life. SETTING: A stratified sample of 26 NH and 55 RC/AL facilities in four states. Participants: Family members (n=97) and long-term care (LTC) staff (n=104) identified as most involved in care of 124 residents who died over a 15-month period. MEASUREMENTS: A variety of reported measures of care and symptoms before death, including the Discomfort Scale for Dementia of the Alzheimer's Type. RESULTS: Of 124 decedents, 27 (22%) received hospice services. Dementia was less common in hospice enrollees than in decedents who did not receive hospice care. Hospice enrollees more often had moderate/severe pain and dyspnea and received pain treatment and were more likely to receive assistance with mouth care and eating and drinking. There were no differences related to unmet need, and observed differences were largely eliminated when comparisons were limited to residents whose deaths were expected. CONCLUSION: Rates of hospice use observed in this study (22%) were considerably higher than previously reported, although persons with dementia may continue to be underreferred. Hospice use is targeted to dying residents with higher levels of reported pain and dyspnea. Because difference in care largely disappears in cases when death was expected, LTC staff seem to be well positioned to provide end-of-life care for their residents and are advised to remain sensitive to instances in which death may be expected.     

Hospice Care: Nurses’ Experience and Perception of Older Adult Patients’ Experience

Objectives: The current study sought to understand the differences hospice nurses perceived in caring for older adult patients who utilize hospice for longer and shorter periods, older adult patients’ experience of hospice services, and if length of hospice stays influenced the patients’ end-of-life experience.

Methods: Interpretative Phenomenological Analysis was used to extract themes and subthemes from 10 interviews conducted with hospice nursing staff.

Results: Four major themes were identified pertaining to nurses perspective on older adults’ views of hospice and how length of hospice use impacts end-of-life care.

Conclusion: These themes suggest hospice nursing staff believe longer hospice stays are more positive and that older adults identify more positive aspects of hospice when using it for longer periods of time. Results suggest that nurses believe length of use directly impacts patient care and the experience of hospice services.

Clinical Implications: Participating nurses reported that older adults have a lack of information on hospice services. It was suggested that more information is needed and that providing such education may lead to longer hospice stays.     

Referral and timing of referral to hospice care in nursing homes: the significant role of staff members

PURPOSE: Given concerns about end-of-life care for many nursing home (NH) residents, this study sought to understand factors influencing hospice referral or nonreferral as well as timing of referral. DESIGN AND METHODS: We conducted semistructured interviews with personnel from seven participating NHs and two hospices. We interviewed NH directors of nursing regarding facility referral practices and conducted interviews with 34 NH nurses, 30 NH aides, and 17 hospice nurses knowledgeable about the factors that led to the hospice status of 32 NH decedents. Selected decedents varied by diagnosis and hospice status (received hospice for >7 days, 相似文献   

Dying on the Streets: Homeless Persons’ Concerns and Desires about End of Life Care

Background There is little understanding about the experiences and preferences at the end of life (EOL) for people from unique cultural and socioeconomic backgrounds. Homeless individuals are extreme examples of these overlooked populations; they have the greatest risk of death, encounter barriers to health care, and lack the resources and relationships assumed necessary for appropriate EOL care. Exploring their desires and concerns will provide insight for the care of this vulnerable and disenfranchised population, as well as others who are underserved. Objective Explore the concerns and desires for EOL care among homeless persons. Design Qualitative study utilizing focus groups. Participants Fifty-three homeless persons recruited from agencies providing homeless services. Measurements In-depth interviews, which were audiotaped and transcribed. Results We present 3 domains encompassing 11 themes arising from our investigation, some of which are previously unreported. Homeless persons worried about dying and EOL care; had frequent encounters with death; voiced many unique fears, such as dying anonymously and undiscovered; favored EOL documentation, such as advance directives; and demonstrated ambivalence towards contacting family. They also spoke of barriers to EOL care and shared interventions to improve dying among the very poor and estranged. Conclusions Homeless persons have significant personal experience and feelings about death, dying, and EOL care, much of which is different from those previously described in the EOL literature about other populations. These findings have implications not only for homeless persons, but for others who are poor and disenfranchised. Potential Financial Conflict of Interest None disclosed     

Measuring the quality of dying in long-term care

OBJECTIVES: To describe two versions of a new measure, The Quality of Dying in Long-Term Care, for postdeath administration to surrogate respondents (staff and family caregivers) of all decedents (QOD-LTC) and of cognitively intact decedents (QOD-LTC-C) who die in nursing homes (NHs) and residential care or assisted living (RC/AL) facilities. DESIGN: Using two levels of exploratory factor analysis, 15 candidate items for the QOD-LTC and 36 candidate items for the QOD-LTC-C were tested using multiple criteria to determine factor structure and interpretability of the quality of dying in long-term care (LTC). SETTING: One hundred seventeen RC/AL facilities and 31 NHs in FL, MD, NC, and NJ. PARTICIPANTS: Family (n=439) and staff (n=332) caregivers of 633 decedents from a stratified random sample from RC/AL facilities and NHs in four states. MEASUREMENTS: Trained interviewers asked respondents to rate statements describing potentially important aspects of the quality of dying using a 5-point Likert scale. The scale items were analyzed using exploratory factor analysis with communalities set to unity using a Promax rotation. RESULTS: The 11-item QOD-LTC (alpha=0.66), appropriate for surrogate respondents for all decedents, consists of three domains (personhood, closure, preparatory tasks). The 23-item instrument for surrogate respondents of cognitively intact decedents, the QOD-LTC-C (alpha=0.85), consists of five domains (sense of purpose, closure, control, social connection, preparatory tasks). CONCLUSION: The QOD-LTC and QOD-LTC-C are psychometrically acceptable measures of the quality of the dying experience, developed for and tested in LTC settings. Use of these measures can increase understanding of the dying experience in LTC.     

Exploring Staff Clinical Knowledge and Practice with LGBT Residents in Long-Term Care: A Grounded Theory of Cultural Competency and Training Needs

ABSTRACT

Objectives: Existing literature shows that LGBT residents are likely to face suboptimal care in LTC facilities due to prejudice and discriminatory policies. The aim of this project was to assess the LGBT cultural competency of staff working in LTC facilities, identify their current training needs, and develop a framework for understanding LGBT cultural competency among LTC staff and providers.

Methods: This grounded theory study comprised data from focus groups of interdisciplinary staff from three LTC facilities.

Results: Results suggested that LTC staff struggle with how to be sensitive to LGBT residents’ needs. Tension appeared to exist between wanting to provide an equal standard of care to all LTC residents and fearing they would show “favoritism” or “special treatment,” which might be viewed as unprofessional. Participants indicated training could help to address the ambivalence they experience about providing sensitive care to subpopulations of residents who face stigma and oppression.

Conclusions: LTC staff stand to benefit from cultural competency training focused on LGBT residents. Training should be not only informational in nature, but also facilitate greater self-awareness and self-efficacy with respect to providing care to LGBT people.     

Advance directives and intensity of care delivered to hospitalized older adults at the end-of-life

BackgroundOlder adults prefer comfort over life-sustaining care. Decreased intensity of care is associated with improved quality of life at the end-of-life (EOL).ObjectivesThis study explored the association between advance directives (ADs) and intensity of care in the acute care setting at the EOL for older adults.MethodsA retrospective, correlational study of older adult decedents (N = 496) was conducted at an academic medical center. Regression analyses explored the association between ADs and intensity of care.ResultsAdvance directives were not independently predictive of aggressive care but were independently associated with referrals to palliative care and hospice; however, effect sizes were small, and the timing of referrals was late.ConclusionThe ineffectiveness of ADs to reduce aggressive care or promote timely referrals to palliative and hospice services, emphasizes persistent inadequacies related to EOL care. Research is needed to understand if this failure is provider-driven or a flaw in the documents themselves.     

Interdisciplinary End-of-Life Care in Nursing Homes

ABSTRACT

About 25% of deaths in the United States now occur in nursing homes, and this proportion is increasing. Current end-of-life (EOL) care in these facilities faces substantial challenges, including under-management of pain, dyspnea, and other symptoms, a clash of cultures between palliative care/hospice teams and the nursing facility, and reimbursement policy that discourages the use of hospice. For ethnic minorities, these challenges are more striking. Improvement in EOL care in nursing homes requires integration between the traditional rehabilitative/restorative mission of long-term care and the palliative model of hospice. Education, better utilization of hospice, cooperation in quality improvement, and changes in reimbursement policy will lead to better care for these increasingly frail and elderly patients.     

Families' perception of the added value of hospice in the nursing home

OBJECTIVE: To determine if family members perceive that hospice improves the care of dying nursing home residents during the last 3 months of life. DESIGN: Mailed survey. PARTICIPANTS: Family members for all nursing home hospice enrollees in North Carolina during a 6-month period. MEASUREMENTS: After residents' deaths, family members answered questions about the quality of care for symptoms before and after hospice, the added value of hospice, the effect of hospice on hospitalization, and special services provided by nursing home staff or by hospice staff. RESULTS: A total of 292 (73%) of 398 eligible family members completed surveys. The average age of the nursing home residents who had received hospice was 79.5 years; 50% had cancer and 76% were dependent for self-care. In their last 3 months, 70% of decedents had severe or moderate pain, 56% had severe or moderate dyspnea, and 61% had other symptoms. Quality of care for physical symptoms was rated good or excellent by 64% of family before hospice and 93% after hospice (P<.001). Dying residents' emotional needs included care for moderate or severe depression (47%), anxiety (50%), and loneliness (35%). Quality of care for emotional needs was rated good or excellent by 64% of family before hospice and 90% after hospice (P<.001). Fifty-three percent of respondents believed hospice prevented hospitalizations. Family estimated the median added value of hospice to be $75 per day and described distinct special services provided by hospice and by nursing home staff. CONCLUSIONS: Family members believe that nursing home hospice improves quality of care for symptoms, reduces hospitalizations, and adds value and services for dying nursing home residents.     

Terminal trajectories of functional decline in the long-term care setting

BACKGROUND: Little is known about the terminal trajectories of functional decline among long-term care (LTC) residents dying with different diseases. METHODS: A retrospective cohort study was performed on 747 individuals aged 65 or older who died between January 1994 and December 2004 in a 675-bed LTC facility in Massachusetts. Three study groups were created: advanced dementia, n = 314 (42%); terminal cancer, n = 63 (8%); and organ failure (congestive heart failure and chronic obstructive pulmonary disease), n = 370 (50%). Quarterly scores of 7 activities of daily living (ADLs) during the last year of life derived from the Minimum Data Set were compared among the three groups. Each activity was rated from 0 to 4 (higher scores indicate more dependence; total range, 0-28). RESULTS: The mean age of all individuals at death was 91 +/- 6 (standard deviation) years. Functional decline was greatest during the last 3 months of life, but this decline was most precipitous in the terminal cancer and organ failure groups compared to the advanced dementia group. The mean change in ADL scores during the last year of life differed among the three groups (p <.001), with the greatest decline in the terminal cancer group (from initial score 13 to final score 25), followed by the organ failure group (13 to 22), and finally, the advanced dementia group (24 to 27). CONCLUSIONS: The terminal trajectories of functional decline among LTC residents vary by underlying diseases. An understanding of these trajectories may be useful to clinicians and families caring for LTC residents near the end of life.     

Improving processes of hospital care during the last hours of life

BACKGROUND: Known for excellence in care in the last days and hours of life, hospice programs can help individuals have a "good death" and lead to higher family satisfaction with quality of care. Our objective was to evaluate the effectiveness of a multicomponent palliative care intervention based on the best practices of home hospice and designed to improve the quality of care provided for patients dying in an acute care inpatient setting. METHODS: This study was a before-after intervention trial conducted between 2001 and 2003. Participants included physician, nursing, and ancillary staff on inpatient services of an urban, tertiary care Veterans Affairs medical center. The palliative care intervention included staff education and support to identify patients who were actively dying and implement care plans guided by a comfort care order set template for the last days or hours of life. Data abstracted from computerized medical records of 203 veterans who died during a 6-month period before (n = 108) and after (n = 95) intervention were used to determine the impact of intervention on symptom documentation and 5 process of care indicators. RESULTS: There was a significant increase in the mean (SD) number of symptoms documented from 1.7 (2.1) to 4.4 (2.7) (P<.001), and the number of care plans increased from 0.4 (0.9) to 2.7 (2.3) (P<.001). Opioid medication availability increased from 57.1% to 83.2% (P<.001), and do-not-resuscitate orders increased from 61.9% to 85.1% (P<.001). There were nonsignificant changes in the proportion of deaths that occurred in intensive care units (P = .17) and in the use of nasogastric tubes (P = .40), and there was a significant increase in the use of restraints (P<.001). CONCLUSION: Our results indicate that end-of-life care improved after the introduction of the palliative care program.     

Hospice enrollment and hospitalization of dying nursing home patients.

PURPOSE: This study's purpose was to evaluate whether Medicare hospice care provided in nursing homes is associated with lower hospitalization rates. SUBJECTS AND METHODS: This retrospective cohort study included nursing home residents in five states who enrolled in hospice between 1992 and 1996 (n = 9202), and who died before 1998. For each hospice patient, 3 nonhospice residents (2 in 106 instances) were chosen (n = 27,500). Medicare claims identified hospice enrollment and acute care hospitalizations. RESULTS: Twenty-four percent of hospice and 44% of nonhospice residents were hospitalized in the last 30 days of life. Adjusting for confounders, hospice patients were less likely than nonhospice residents to be hospitalized (odds ratio 0.43; 95% confidence interval [CI]: 0.39 to 0.46). Considering all of nonhospice residents who died (n = 226,469), those in facilities with no hospice had a 47% hospitalization rate, whereas rates were 41% in facilities with low hospice use and 39% in facilities with moderate hospice use (5%+ of patients in hospice). Hospitalization was less likely for nonhospice residents in facilities with low hospice use (odds ratio 0.82; 95% CI: 0.80 to 0.84) and moderate hospice use (odds ratio 0.71; 95% CI: 0.69 to 0.74), compared with those in facilities with no hospice. CONCLUSIONS: When integrated into the nursing home care processes, hospice care is associated with less hospitalization for Medicare hospice patients. Additionally, possibly through diffusion of palliative care philosophy and practices, nonhospice residents who died in nursing homes having a hospice presence had lower rates of end-of-life hospitalizations.     

Outcomes and characteristics of patients discharged alive from hospice

OBJECTIVES: To describe outcomes and characteristics of patients discharged alive from hospice. DESIGN: Prospective cohort study using a telephone survey. SETTING: Hospices (n=18) participating in the Population-Based Palliative Care Research Network during the 1-year study period. PARTICIPANTS: English-speaking adults (n=164) who were discharged alive from participating hospices during the 1-year study period. MEASUREMENTS: Mortality within 6 months of hospice discharge. RESULTS: Thirty-five percent (n=48) of the 139 patients with known outcomes died within 6 months of hospice discharge, 15 of whom (31%) died without hospice readmission. There were no significant associations between sex (P=.77), length of hospice service (P=.99), diagnosis (P=.73), discharge disposition (P=.54), admission evidence of prognosis of less than 6 months to live (P=.22-.95), Karnofsky score at admission or change between admission and discharge (P=.39, P=.38, respectively), or duration of hospice care after stabilization (P=.83) and mortality within 6 months after hospice discharge. Age (P=.11), discharge Karnofsky score (P=.17), and reason for discharge being improved or stabilized condition (P=.13) trended toward statistical significance. The strongest predictor of mortality after hospice discharge was a report that the patient's condition had worsened (hazard ratio=10.2, 95% confidence interval 4.5-23.4). CONCLUSION: One-third of patients who were discharged from hospice died within 6 months of hospice discharge, indicating ongoing eligibility for hospice care even under the strictest interpretation of hospice eligibility criteria. Patients who are discharged from hospice care should be evaluated frequently, especially within the first weeks to months after discharge, for changes in status, unmet needs, and potential hospice readmission.     

Experiences With and Attitudes Toward Death and Dying Among Homeless Persons

Background Homeless persons face many barriers to health care, have few resources, and experience high death rates. They live lives of disenfranchisement and neglect. Few studies have explored their experiences and attitudes toward death and dying. Unfortunately, studies done in other populations may not apply to homeless persons. Exploring these experiences and attitudes may provide insight into life, health care, and end-of-life (EOL) concerns of this population. Objective To explore the experiences and attitudes toward death and dying among homeless persons. Design Qualitative study utilizing focus groups. Participants Fifty-three homeless persons recruited from homeless service agencies. Measurements In-depth interviews, which were audiotaped and transcribed. Results We present seven themes, some of which are previously unreported. Homeless persons described many significant experiences with death and dying, and many participants suffered losses while very young. These encounters influenced participants’ attitudes toward risks and risky behavior: e.g., for some, these experiences provided justification for high-risk behaviors and influenced their behaviors while living on the streets. For others, they may be associated with their homelessness. Finally, these experiences informed their attitudes toward death and dying as well as EOL care; homeless persons believe that care will be poor at the EOL. Conclusions Findings from this study have implications for addressing social services, health promotion, prevention, and EOL care for homeless persons, as well as for others who are poor and disenfranchised.     

Family caregiver involvement for long-term care residents at the end of life

Objectives. To examine family caregiver involvement for long-term care (LTC) residents during the last month of life. Researchers examined direct (personal care and meals) and indirect (management and monitoring) types of caregiver involvement and the relationship between the type of involvement and predisposing, enabling, and need characteristics. Researchers also examined whether the frequency of involvement changed during the end-of-life (EOL) period. Method. Researchers used an expanded version of Andersen's Behavioral Model to conceptualize predictors of family involvement for 438 residents in 125 residential care/assisted living and nursing home settings. Bivariate and multivariate analyses examined relationships among variables. RESULTS: More than one-half of family caregivers monitored, managed care and assisted with meals, and 40% assisted with personal care tasks. The enabling characteristic of days visited and the need characteristic of caregiver role strain were related to each of the 4 types of involvement. However, the other correlates were distinct to the type of involvement. Discussion. Families are involved in EOL care in LTC settings. Higher role strain is related to more involvement in each of the 4 types of involvement, suggesting that whether involvement is by desire, perceived need, or both, there is cause to more critically examine the family caregiver's desired role and need for support.     

Empowering assisted living front-line care staffs to better care for alzheimer’s and dementia residents

Creating a feeling of empowerment among front-line care staff members may assist in better coping and achievement of quality care with a growing assisted living resident population who have Alzheimer’s disease or other forms of Dementia. The purpose of this qualitative research study was two fold in nature: (1) identify the training needs of front-line care staff members, and (2) create a training manual which would empower these front-line care staff workers to conduct their care duties in a more confident, effective, and sensitive manner. The first phase of this research was conducted with 24 front-line care staff in three assisted-living facilities in Illinois, New Mexico, and Florida, all women 18-69 years of age (M=36.8, SD=7.3), with 6 months to 10 years work experience in this job (M=2.19 years, SD=2.3 years). All reported that they had not received sufficient training in caring for this growing segment of the resident population. Based on responses to a needs-analysis questionnaire (n=24), a “Dementia-related Care Training” manual was developed. The following four themes emerged from needs analysis responses, and were the bases for the training modules: (1) experiencing the meaning of Alzheimer’s disease or other forms of Dementia, (2) acknowledging residents’ changing care needs over time, (3) realizing the importance of individualized care for residents, and (4) empowering front-line care staff members in the care process. The training manual was administered at the same three locations with some participants from the original sample (n=18), in order to receive feedback about the manual’s effectiveness and usefulness for a front-line care staff. Post-training feedback indicated that using such a training manual in an on-going manner would increase front-line care staffs’ job satisfaction and job commitment, as well as reduce job stress through better on-the-job coping skills learned. overseeing the licensing of all of the Brookdale owned and managed properties (67 total) throughout the United States. She also assists with staff training at the properties according in to state regulations. Ms Gurnik is a member of both ASA and LSN (Life Services Network). Her on-going research focuses on “quality of life” ageing issues related to caregiving, the workplace, retirement adjustment, and later-life education. Her area of specialty is industrial gerontology, the study of the ageing workforce.     

What enables good end of life care for people with dementia? A multi-method qualitative study with key stakeholders

Background

People with advanced dementia often experience suboptimal end of life care (EoLC) with inadequate pain control, increased hospitalisation, and fewer palliative care interventions compared to those with cancer. Existing policy, guidance and recommendations are based largely on expert opinion because of a shortage of high quality, empirical research. Previous studies have tended to consider the views and experience of particular groups. Whilst providing important evidence, they do not take into account the diversity of perspectives of different stakeholders. The Supporting Excellence in End of life care in Dementia (SEED) programme involved multiple stakeholder groups and an integrative analysis to identify key components of good EoLC for people with dementia and to inform a new intervention.

Methods

The views of national experts, service managers, frontline staff, people with dementia and family carers were explored using a range of qualitative methods (semi-structured interviews, focus groups, discussions and observations of routine care). The large dataset comprises 116 interviews, 12 focus groups and 256?h of observation. Each dataset was initially analysed thematically prior to an integrative analysis, which drew out key themes across stakeholder groups.

Results

Through the integrative analysis seven key factors required for the delivery of good EoLC for people with dementia were identified: timely planning discussions; recognition of end of life and provision of supportive care; co-ordination of care; effective working relationships with primary care; managing hospitalisation; continuing care after death; and valuing staff and ongoing learning. These factors span the entire illness trajectory from planning at a relatively early stage in the illness to continuing care after death.

Conclusions

This unique study has confirmed the relevance of much of the content of existing end of life frameworks to dementia. It has highlighted seven key areas that are particularly important in dementia care. The data are being used to develop an evidence-based intervention to support professionals to deliver better EoLC in dementia.