Identifying Nursing Home Residents with Unmet Palliative Care Needs: A Systematic Review of Screening Tool Measurement Properties

ObjectivesDespite common use of palliative care screening tools in other settings, the performance of these tools in the nursing home has not been well established; therefore, the purpose of this review is to (1) identify palliative care screening tools validated for nursing home residents and (2) critically appraise, compare, and summarize the quality of measurement properties.DesignSystematic review of measurement properties consistent with Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) guidelines.Settings and participantsEmbase (Ovid), MEDLINE (PubMed), CINAHL (EBSCO), and PsycINFO (Ovid) were searched from inception to May 2022. Studies that (1) reported the development or evaluation of a palliative care screening tool and (2) sampled older adults living in a nursing home were included.MethodsTwo reviewers independently screened, selected, extracted data, and assessed risk of bias.ResultsWe identified only 1 palliative care screening tool meeting COSMIN criteria, the NECesidades Paliativas (NEC-PAL, equivalent to palliative needs in English), but evidence for use with nursing home residents was of low quality. The NEC-PAL lacked robust testing of measurement properties such as reliability, sensitivity, and specificity in the nursing home setting. Construct validity through hypothesis testing was adequate but only reported in 1 study. Consequently, there is insufficient evidence to guide practice. Broadening the criteria further, this review reports on 3 additional palliative care screening tools identified during the search and screening process but which were excluded during full-text review for various reasons.Conclusion and ImplicationsGiven the unique care environment of nursing homes, we recommend future studies to validate available tools and develop new instruments specifically designed for nursing home use. In the meantime, we recommend that clinicians consider the evidence presented here and choose a screening instrument that best meets their needs.     

A Comparative Analysis of Comprehensive Geriatric Assessments for Nursing Home Residents Receiving Palliative Care: A Systematic Review

Background/ObjectivesNursing homes become important locations for palliative care. By means of comprehensive geriatric assessments (CGAs), an evaluation can be made of the different palliative care needs of nursing home residents. This review aims to identify all CGAs that can be used to assess palliative care needs in long-term care settings and that have been validated for nursing home residents receiving palliative care. The CGAs are evaluated in terms of psychometric properties and content comprehensiveness.DesignA systematic literature search in electronic databases MEDLINE, Web of Science, EMBASE, Cochrane, CINAHL, and PsycInfo was conducted for the years 1990 to 2012.SettingNursing homes.ParticipantsNursing home residents with palliative care needs.MeasurementsPsychometric data on validity and reliability were extracted from the articles. The content comprehensiveness of the identified CGAs was analyzed, using the 13 domains for a palliative approach in residential aged care of the Australian Government Department of Health and Aging.ResultsA total of 1368 articles were identified. Seven studies met our inclusion criteria, describing 5 different CGAs that have been validated for nursing home residents with palliative care needs. All CGAs demonstrate moderate to high psychometric properties. The interRAI Palliative Care instrument (interRAI PC) covers all domains for a palliative approach in residential aged care of the Australian Government Department of Health and Aging. The McMaster Quality of Life Scale covers nine domains. All other CGAs cover seven domains or fewer.ConclusionsThe interRAI PC and the McMaster Quality of Life Scale are considered to be the most comprehensive CGAs to evaluate the needs and preferences of nursing home residents receiving palliative care. Future research should aim to examine the effectiveness of the identified CGAs and to further validate the CGAs for nursing home residents with palliative care needs.     

Making guidelines,research and scientific papers as simple as possible

Background: Most patients with cancer want to die at home and will spend most of the final year of life there. Primary care staff will, therefore, provide the bulk of palliative care at home. Yet, palliative care training for staff is fragmented and ad hoc. Some feel inadequately trained for the tasks they are expected to perform.

Aim: The aim of this study was to carry out an educational needs assessment in palliative care of general practitioners and community nurses in Northern Ireland.

Method: A semi-structured postal questionnaire was sent to 1018 GPs and 750 community nurses with a reminder approximately one month later.

Results: 611 GPs and 497 nurses replied giving a response rate of 60% for the doctors and 66% for nurses. 52% of doctors and 94% of nurses expressed a special interest in palliative care. Though the majority of both groups felt confident in their palliative care skills, 83% of doctors and 95% of nurses said they would be likely to undertake further training in palliative care. Preferences for the topics and type of further training were similar for the two groups. The most popular topics for further training for both groups were pain and symptom control, bereavement care and research and audit methods. Preferred methods of further training included specialist lectures, discussion with specialists, hands-on experience in a hospice and multidisciplinary team meetings. Perceived barriers to further training were lack of time, lack of locally available courses, expense of providing locums or of self-funding courses and lack of recognition from management.

Conclusion: Primary care staff have expressed a keenness to provide community palliative care and provide it well. It now rests with managers and educationalists in the field to recognise and support staff in their needs.     

Health services, health promotion, and health literacy: report from the State of the Science in Aging with Developmental Disabilities Conference

BackgroundThis article summarizes the proceedings of the Health Services, Health Promotion, and Health Literacy work group that was part of the “State of the Science in Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Living.” Participants aimed to identify unmet needs related to health and health care and to determine training, research, and policy needs addressing the demands for increasing health care services and resources, end-of-life and palliative care, and health literacy.MethodsKey issues addressed included (1) major health-related disparities for adults with intellectual and developmental disabilities (I/DD); (2) the impact of internal and external factors on health care services and resources, end-of-life and palliative care, and health literacy for adults with I/DD; and (3) frameworks that can be used for understanding and promoting health care services and resources, end-of-life and palliative care, and health literacy.ResultsGroup participants identified research and practice needs related to primary care, health promotion, disease prevention, illness care, end-of-life issues, and palliative care.ConclusionsHealth care services for adults with I/DD may occur in a variety of settings including community-based programs, private practices, and community-based agencies supporting persons with disabilities. Major gaps relate to health disparities due to underdiagnosis, misdiagnosis, less chance of receiving prompt treatment, limited access to providers, lack of research information, transportation barriers, and lack of accessible medical equipment. Models of care including variables related to translation, sustainability, accessibility (e.g., affordability, availability), acceptability (e.g., culturally relevant, satisfaction), and equity need to be developed.     

Assessment of Knowledge and Attitude towards Palliative Care and Associated Factors among Nurses Working in North Wollo Hospitals

BackgroundPalliative care improves the quality of life of patients facing a life-threatening illness. Nurses should improve their caregiving capacity. In Ethiopia, palliative care is underestimated. The availability of data regarding the knowledge and attitude of nurses towards palliative care is critically important. Thus, this study aimed to assess the level of knowledge and attitude of nurses towards palliative care.MethodsInstitution-based, cross-sectional study was conducted in North Wollo hospitals. A simple random sampling technique was used. The data was collected using structured self-administered questionnaires from February to March 2019. The analysis was done using a binary logistic regression model. P-value < 0.05 was considered as statistically significant.ResultsThe result revealed that 59.7% of the respondents had good knowledge and 44.2% had a favorable attitude towards palliative care. Level of education, experience in caring for chronically ill patients, and experience in caring for dying family members within the last 6 months had a significant association with the knowledge of nurses. Monthly income, experience in caring for chronically ill patients, formal palliative care education, and knowledge were found statistically significant with the attitude of nurses towards palliative care.ConclusionMore than half of the nurses had good knowledge, but less than half of the respondents had a favorable attitude towards palliative care. Attention should be given towards palliative care by the health policy and needs to be incorporated into the national curriculum of nursing education.     

Telehealth Palliative Care in Nursing Homes: A Scoping Review

ObjectivesMany adults older than 65 spend time in a nursing home (NH) at the end of life where specialist palliative care is limited. However, telehealth may improve access to palliative care services. A review of the literature was conducted to synthesize the evidence for telehealth palliative care in NHs to provide recommendations for practice, research, and policy.DesignJoanna Briggs Institute guidance for scoping reviews, and Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews frameworks were used to guide this literature review.Settings and ParticipantsReviewed articles focused on residents in NHs with telehealth palliative care interventionists operating remotely. Participants included NH residents, care partner(s), and NH staff/clinicians.MethodsWe searched Medline (Ovid), Embase (Elsevier), Cochrane Library (WileyOnline), Scopus (Elsevier), CINHAL (EBSCOhost), Trip PRO, and Dissertations & Theses Global (ProQuest) in June 2021, with an update in January 2022. We included observational and qualitative studies, clinical trials, quality improvement projects, and case and clinical reports that self-identified as telehealth palliative care for NH residents.ResultsThe review yielded 11 eligible articles published in the United States and internationally from 2008 to 2020. Articles described live video as the preferred telehealth delivery modality with goals of care and physical aspects of care being most commonly addressed. Findings in the articles focused on 5 patient and family-centered outcomes: symptom management, quality of life, advance care planning, health care use, and evaluation of care. Consistent benefits of telehealth palliative care included increased documentation of goals of care and decrease in acute care use. Disadvantages included technological difficulties and increased NH financial burden.Conclusions and ImplicationsAlthough limited in scope and quality, the current evidence for telehealth palliative care interventions shows promise for improving quality and outcomes of serious illness care in NHs. Future empirical studies should focus on intervention effectiveness, implementation outcomes (eg, managing technology), stakeholders’ experience, and costs.     

Effects of an Integrated Palliative Care Pathway: More Proactive GPs,Well Timed,and Less Acute Care: A Clustered,Partially Controlled Before-After Study

ObjectivesThis study presents the design of an integrated, proactive palliative care pathway covering the full care cycle and evaluates its effects using 3 types of outcomes: (1) physician-reported outcomes, (2) outcomes reported by family, and (3) (utilization of) health care outcomes.DesignA clustered, partially controlled before-after study with a multidisciplinary integrated palliative care pathway as its main intervention.Setting and Participantsafter assessment in hospital departments of oncology, and geriatrics, and in 13 primary care facilities, terminally ill patients were proactively included into the pathway. Patients' relatives and patients’ general practitioners (GPs) participated in a before/after survey and in interviews and focus groups.InterventionA multidisciplinary, integrated palliative care pathway encompassing (among others) early identification of the palliative phase, multidisciplinary consultation and coordination, and continuous monitoring of outcomes.MeasuresMeasures included GP questionnaire: perceived quality of palliative care; questionnaires by family members: FAMCARE, QOD-LTC, EDIZ; and 3 types of health care outcomes: (1) utilization of primary care: consultations, intensive care, communication, palliative home visits, consultations and home visits during weekends and out-of-office-hours, ambulance, admission to hospital; (2) utilization of hospital care: outpatient ward consultations, day care, emergency room visits, inpatient care, (radio) diagnostics, surgical procedures, other therapeutic activities, intensive care unit activities; (3) pharmaceutical care utilization.ResultsGPs reported that palliative patients die more often at their preferred place of death, and that they now act more proactively toward palliative patients. Relatives of included, deceased patients reported clinically relevant improved quality of dying, and more timely palliative care. Patients in the pathway received more (intensive) primary care, less unexpected care during out-of-office hours, and more often received hospital care in the form of day care.Conclusions and ImplicationsAn integrated palliative care pathway improves a variety of clinical outcomes important to patients, their families, physicians, and the health care system. The integration of palliative care into multidisciplinary, proactive palliative care pathways, is therefore a desirable future development.     

Racial differences in future care planning in late life

ABSTRACT

Objectives: Although many older adults fear frailty and loss of independence in late life, relatively few make plans for their future care. Such planning is particularly limited among racial minorities. Given the benefits of future care planning (FCP), it is important to understand factors that facilitate or hamper FCP in late life. Our study explored racial, demographic, and dispositional influences on thinking about and engagement in FCP among community-dwelling older adults.

Design: This study utilized data from the Elderly Care Research Center’s longitudinal study of successful aging based on interviews with 409 older adults. Along with race, education and other demographic factors, we explored dispositional influences of optimism and religiosity on FCP using logistic regression.

Results: African American older adults had significantly lower odds of executing FCP (β?=?0.36, p?<?.05) when compared to White older adults. However, this estimate was no longer statistically significant after controlling for education, disability status, optimism, and religiosity. Older adults with higher education had significantly higher odds of thinking about and executing FCP. Higher level of optimism was associated with lower odds of FCP.

Conclusions: Limited educational resources and the greater prevalence of dispositions of religiosity and optimism among African American older adults may contribute to their reluctance to engage in FCP in comparison to their white counterparts. Our findings offer practice implications indicating a need for interventions to encourage older adults, particularly racial minorities, to recognize and actively plan for their future care needs.     

Palliative Care Implementation in Long-Term Care Facilities: European Association for Palliative Care White Paper

ObjectivesThe number of older people dying in long-term care facilities (LTCFs) is increasing globally, but care quality may be variable. A framework was developed drawing on empirical research findings from the Palliative Care for Older People (PACE) study and a scoping review of literature on the implementation of palliative care interventions in LTCFs. The PACE study mapped palliative care in LTCFs in Europe, evaluated quality of end-of-life care and quality of dying in a cross-sectional study of deceased residents of LTCFs in 6 countries, and undertook a cluster-randomized control trial that evaluated the impact of the PACE Steps to Success intervention in 7 countries. Working with the European Association for Palliative Care, a white paper was written that outlined recommendations for the implementation of interventions to improve palliative and end-of-life care for all older adults with serious illness, regardless of diagnosis, living in LTCFs. The goal of the article is to present these key domains and recommendations.DesignTransparent expert consultation.SettingInternational experts in LTCFs.ParticipantsEighteen (of 20 invited) international experts from 15 countries participated in a 1-day face-to-face Transparent Expert Consultation (TEC) workshop in Bern, Switzerland, and 21 (of 28 invited) completed a follow-up online survey.MethodsThe TEC study used (1) a face-to-face workshop to discuss a scoping review and initial recommendations and (2) an online survey.ResultsThirty recommendations about implementing palliative care for older people in LTCFs were refined during the TEC workshop and, of these, 20 were selected following the survey. These 20 recommendations cover domains at micro (within organizations), meso (across organizations), and macro (at national or regional) levels addressed in 3 phases: establishing conditions for action, embedding in everyday practice, and sustaining ongoing change.Conclusions and implicationsWe developed a framework of 20 recommendations to guide implementation of improvements in palliative care in LTCFs.     

A Systematic Review of Nursing Home Palliative Care Interventions: Characteristics and Outcomes

BackgroundDespite recommendations to integrate palliative care into nursing home care, little is known about the most effective ways to meet this goal.ObjectiveTo examine the characteristics and effectiveness of nursing home interventions that incorporated multiple palliative care domains (eg, physical aspects of care—symptom management, and ethical aspects—advance care planning).DesignSystematic review.MethodsWe searched MEDLINE via PubMed, Embase, CINAHL, and Cochrane Library's CENTRAL from inception through January 2019. We included all randomized and nonrandomized trials that compared palliative care to usual care and an active comparator. We assessed the type of intervention, outcomes, and the risk of bias.ResultsWe screened 1167 records for eligibility and included 13 articles. Most interventions focused on staff education and training strategies and on implementing a palliative care team. Many interventions integrated advance care planning initiatives into the intervention. We found that palliative care interventions in nursing homes may enhance palliative care practices, including processes to assess and manage pain and symptoms. However, inconsistent outcomes and high or unclear risk of bias among most studies requires results to be interpreted with caution.Conclusions and ImplicationsHeterogeneity in methodology, findings, and study bias within the existing literature revealed limited evidence for nursing home palliative care interventions. Findings from a small group of diverse clinical trials suggest that interventions enhanced nursing home palliative care and improved symptom assessment and management processes.     

Retrospective evaluation of palliative care in Romania: the perspective of the involved professionals

Objective: Palliative care at home is a new service provision in Romania. This study evaluated retrospectively, after the patient's death, the provision of care at home from the perspective of professionals directly involved in the care process. The evaluation included assessment of the role of the professional, the functioning of the team, communication with patients and family, and overall judgment. The study is part of the development of palliative care at home, by multi-disciplinary teams in Romania.

Methods: Over a period of eighteen months five teams with a total of 19 professionals, provided palliative care for 103 patients with cancer in its terminal stage. During this period 80 patients died. A questionnaire was sent to the professionals involved. All responded resulting in 181 evaluations. These evaluations are the basis for analysis. The data were analyzed using SPSS.

Results: Of the 181 cases evaluated, 63 indicated an emotional burden on the professionals. GP's and nurses reported such a burden more frequently. A lack of knowledge of how to treat a special case was reported 56 times. This was especially so when a case was judged to be different from other cases, which often included (unexpected) complications. GP's reported cases with complications more frequently than oncologists and nurses. The multidisciplinary teams functioned very satisfactorily in treating patients. Although communication with patients/families was generally judged positively, communication with patients was sometimes viewed as problematic. The overall verdict was that the care delivered to the 80 patients was positive. Most professionals reported that they would deal with the cases in the same way again.

Conclusions: The patients who received palliative care and died, were treated well according to the professionals who evaluated the care process. Improvement of palliative care services at home may be achieved by provision of additional information on (acute) complications. Since palliative care at home is a new phenomenon in Romania, professionals working closely with the patient have to learn to cope with the emotional burden certain cases may include. Eur J Gen Pract 2005;11(3):101–6.     

Understanding the supportive care needs of Hispanic men cancer survivors

Objective. To date, there is a paucity of research and information on Hispanic men cancer survivors (HMCS), who comprise part of the largest and fastest growing racial/ethnic minority group in the country. The purpose of this paper is to provide a deeper understanding of the supportive care needs of HMCS.

Design. Three focus groups with a community sample of HMCS (n?=?18) and interviews with providers (n?=?5) were conducted to explore the supportive care needs of Hispanic men who had been diagnosed with cancer within the last five years. The data were analyzed using applied thematic analysis techniques.

Results. Findings from focus groups and interviews are presented concurrently. The overarching themes that emerged were the need for: culturally sensitive cancer care and better communication with providers; cancer treatment-related information and comprehensive survivorship care; support and to connect with other cancer survivors and the need to negotiate changing gender role expectations and still provide for their family.

Conclusion. Study findings contribute to the literature by presenting the supportive care needs of HMCS and illustrate the need for continued research to address disparities in access to cancer information and in the provision of culturally sensitive care. We provide recommendations and suggestions to address the supportive care needs of HMCS.     

The fragile spirituality of parents whose children died in the pediatric intensive care unit

Abstract

Spiritual care is recognized as a relevant dimension of health care. In the context of pediatric palliative end-of-life care, spirituality entails more than adhering to a spiritual worldview or religion. Interviews with parents whose critically ill child died in the pediatric intensive care unit revealed features of a spirituality that is fragmentary and full of contradictions. This type of spirituality, which we refer to as fragile, speaks of parents’ connectedness with the deceased child and the hope of some kind of reuniting after one’s own death. Acknowledging that fragments of spirituality can be part of parents’ experiences in their child’s end-of-life stage can be a meaningful contribution to compassionate care.     

Involvement of Informal and Formal Service Providers: Meeting the Home Care Needs of Older Adults with Severe Functional Impairments

ABSTRACT

This study examines informal and formal service providers' involvement in each activity of daily living (ADL) of older adults with severe functional impairments and the older adults' unmet needs for ADL assistance. In addition, this study examines the relationship between the involvement of informal and formal service providers and unmet needs for ADL assistance. Using the data from the 1999 National Long-Term Care Survey, the study included 275 older adults, who experienced ADL impairments and received assistance. This study found that nearly a quarter of the older adults reported unmet needs for ADL assistance. This study also found that the involvement of informal and formal service providers was not significantly related to unmet needs. However, the factors, including the older adult's functional status, levels of assistance received, and Medicaid enrollment, were significantly related to unmet needs included. Practice implications from these study findings for home care service providers are discussed.     

Making Housing and Care Decisions for an Older Adult

ABSTRACT

The U.S. Census predicts that the number of people over 65 will rise from its level of 12% in 2000 to 20% by 2030. Currently, one-quarter of all American households have responsibility for caring for an adult over 50. There are several options for adults who need professional care. Some services can be provided at home, while other seniors' needs might be better met in an assisted living or nursing facility. The Web sites described in this article explain care options and how to evaluate care providers. Several sites provide directories of providers as well.     

Women's work at end of life: The intersecting gendered vulnerabilities of patients and caregivers in rural Malawi

ABSTRACT

Gender inequality in the form of gender-based violence manifests throughout the course of women's lives but has a particularly unique impact at end of life. We sampled 26 patients and 14 caregivers for this qualitative critical ethnographic study. The study purpose was to describe the lived experience of female palliative care patients in rural Malawi and their caregivers. The specific aims were to (i) analyse physical, spiritual and mental health needs and (ii) guide best healthcare practice. The study was informed by feminist epistemology, which drew us to an analysis focused on how gender inequality and gender-based violence affect the care of those with terminal illness. In this article, based on our findings, we demonstrate how gender inequality manifests through the intersecting gendered vulnerabilities of patients and their caregivers in rural Malawi. The findings specifically provide insight into the gendered nature of care work and how the gendered life trajectories of both patients and caregivers intersect to impact the health and well-being of both groups. Our findings have implications on how palliative care can be scaled up in rural Malawi in support of women who are experiencing intimate partner violence at end of life, and the caregivers responsible for their well-being.     

Implementation and sustainment of palliative care innovations within organizations for people with intellectual disabilities: A multi-method evaluation

BackgroundProviding palliative care for people with intellectual disabilities (ID) is challenging and professionals caring for people with ID often received limited training in palliative care.ObjectiveTo gain insight into the implementation and sustainment of palliative care innovations, originally developed for the general palliative care population, in organizations for people with ID.MethodsA multi-method evaluation was performed of nine implementation projects concerning three palliative care innovations. Methods included document analyses of project proposals and reports, group interviews with project managers and professionals, and a questionnaire completed by projects managers. Factors influencing implementation were categorized using the Consolidated Framework for Implementation Research.ResultsThe three innovations were applicable in organizations for people with ID, although some adaptations had been made. Implementation activities were focussed on training, cooperation and dissemination of the innovation. Influencing factors were mostly related to the inner setting of the organization, including management support and available resources. Five of the nine project managers were not sure if the innovation was sustained properly within their organization.ConclusionsInnovations originally developed for use in the general palliative care population can be successfully implemented in organizations for people with ID, although adaptation to the specific care setting might be necessary.