Learning needs and perceived barriers and facilitators to end-of-life care: a survey of front-line nurses on acute medical wards.

OBJECTIVES: Caring for dying hospitalised patients is a healthcare priority. Our objective was to understand the learning needs of front-line nurses on the general internal medicine (GIM) hospital wards, and perceived barriers to, and facilitators of, optimal end-of-life care. METHODS: We developed an 85-item survey informed by the Theoretical Domains Framework and Capability-Opportunity-Motivation-Behaviour system. We included demographics and two main domains (knowledge and practice; delivering end-of-life care) with seven subsections. Nurses from four GIM wards and the nursing resource team completed this survey. We analysed and compared results overall, by Capability, Opportunity, and Motivation, and by survey domain. We considered items with median scores <4/7 barriers. We conducted an a priori subgroup analysis based on duration of practice (≤5 and >5 years). RESULTS: Our response rate was 60.5% (144/238). 51% had been practising for >5 years; most respondents were female (93.1%). Nurses had similar scores on the knowledge (mean 76.0%; SD 11.6%) and delivering care (mean 74.5% (8.6%)) domains. Scores for items associated with Capability were higher than those associated with Opportunity (median (first, third quartiles) 78.6% (67.9%, 87.5%) vs 73.9% (66.0%, 81.8%); p=0.04). Nurses practising >5 years had significantly higher scores on all analyses. Barriers included engaging with families having strong emotional reactions, managing goals of care conflicts between patients and families, and staffing challenges on the ward. Additional requested resources included formal training, information binders and more staff. Opportunities for consideration include formalised on-the-job training, access to comprehensive information, including symptom management at the end of life, and debriefing sessions. CONCLUSIONS: Front-line nurses reported an interest in learning more about end-of-life care and identified important barriers that are feasible to address. These results will inform specific knowledge translation strategies to build capacity among bedside nurses to enhance end-of-life care practices for dying patients on GIM wards.

Enhancing end of life care on general internal medical wards: the 3 Wishes Project.

BACKGROUND: Initially developed in the intensive care unit (ICU) at St. Joseph's Healthcare Hamilton (SJHH) the 3 Wishes Project (3WP) provides personalized, compassionate care to dying patients and their families. The objective of this study was to develop and evaluate 3WP expansion strategies for patients cared for on General Internal Medicine (GIM) wards in our hospital. METHODS: From January 2020-November 2021, we developed a phased, multicomponent approach for program expansion. We enrolled patients on the GIM wards who had a high probability of dying in hospital, then elicited, implemented, and documented wishes for them or their families. Data were analyzed descriptively. RESULTS: From March 2020 to November 2020, we implemented staff education and engagement activities, created an Expansion Coordinator position, held strategic consultations, and offered enabling resources. From March 2020 to November 2021, we enrolled 62 patients and elicited 281 wishes (median [1st, 3rd quartiles] 4 [4, 5] wishes/patient). The most common wish categories were personalizing the environment (67 wishes, 24%), rituals and spiritual support (42 wishes, 15%), and facilitating connections (39 wishes, 14%). The median [1st, 3rd] cost/patient was $0 [0, $10.00] (range $0 to $86); 91% of wishes incurred no cost to the program. CONCLUSIONS: The formal expansion of the 3WP on GIM wards has been successful despite COVID-19 pandemic disruptions. While there is still work ahead, these data suggest that implementing the 3WP on the GIM wards is feasible and affordable. Increased engagement of the clinical team during the pandemic suggests that it is positively received.

When 'Being There' Is Disallowed: Disruptions to Knowing and Caring During COVID-19 Visitor Restrictions.

This qualitative study explored the accounts of five health professionals working in hospitals in Hamilton, Ontario, Canada who provided end-of-life care during the COVID-19 pandemic. The study goal was to understand how palliative care providers experienced and responded to the significant change in family presence when visitors were restricted to slow the spread of the virus. Identified was the loss and disruption of important forms of knowing including observational and embodied knowing. Family members' knowledge of how their person was faring was curtailed, as was providers' capacities to know families personally. Family members' less obvious needs did not come forward as readily in the absence of informal encounters with providers. Constraints on knowing and embodied actions often meant phone and video meetings failed to provide meaningful connection. Providers adapted their practice in a range of ways, including by offering verbal and visual images of the person in the setting, paying attention differently, and conveying to family members their knowledge of patients as individuals. The changes and challenges health providers remarked on and the ways they adapted and extended themselves reveal in a new way how the regular presence of family in the care setting shapes the quality of end-of-life care.

The evaluation of a national interprofessional palliative care workshop.

The purpose of this study was to evaluate the impact of a palliative/end-of-life care workshop on students' perceptions of professional identity, team understanding, and their readiness for interprofessional education (IPE). A before-and-after design was used combining both qualitative and quantitative methods. A survey was completed by 25 undergraduate students from a variety of health care professional schools across Canada, both before and after they attended the five-day workshop. There was a significant increase in students' readiness for IPE, perceptions of professional identity, and team understanding after they attended the palliative care workshop. Students stated that learning about other professionals' backgrounds and becoming more sensitive to other team members and their scopes of practice helped change the way they would practice. The findings from this study will contribute to our understanding of student attitudes around IPE and palliative care.

Managing palliative care for adults with advanced heart failure.

The purpose of this study was to explore the care processes experienced by community-dwelling adults dying from advanced heart failure, their family caregivers, and their health-care providers. A descriptive qualitative design was used to guide data collection, analysis, and interpretation. The sample comprised 8 patients, 10 informal caregivers, 11 nurses, 3 physicians, and 3 pharmacists. Data analysis revealed that palliative care was influenced by unique contextual factors (i.e., cancer model of palliative care, limited access to resources, prognostication challenges). Patients described choosing interventions and living with fatigue, pain, shortness of breath, and functional decline. Family caregivers described surviving caregiver burden and drawing on their faith. Health professionals described their role as trying to coordinate care, building expertise, managing medications, and optimizing interprofessional collaboration. Participants strove towards 3 outcomes: effective symptom management, satisfaction with care, and a peaceful death.

Palliative care nursing in rural and urban community settings: a comparative analysis.

Nurses have key roles in the coordination and delivery of community-based palliative care. The purpose of this study was to examine the differences between rural and urban community nurses' delivery of palliative care services. A survey was distributed to 277 nurses employed by a community agency in Ontario, Canada, and a 60% response rate was obtained. Nurses reported spending 27% of their time providing palliative care. Rural and urban nurses had similar roles in palliative care but rural nurses spent more time travelling and were more confident in their ability to provide palliative care. Both groups of nurses reported moderate job satisfaction and moderate satisfaction with the level of interdisciplinary collaboration in their practice. Several barriers to and facilitators of optimal palliative care provision were identified. The study results provide information about the needs of nurses that practise in these settings and may provide a basis for the development of strategies to address these needs.

Palliative care for people with severe persistent mental illness: a review of the literature.

A systematic overview of the literature on palliative care for people with severe persistent mental illness (SPMI) was conducted to inform clinical practice, research, and education. Empirical studies and nonempirical papers were included. Few empirical studies exist. There is even less information about the palliative care needs of, or the nature of palliative care provided to, people with SPMI. Mental health, primary care, and palliative care providers need to partner with people who have SPMI in developing and providing palliative care. The field of palliative care for people with SPMI is wide open and in need of methodologically sound studies that will help define the issues that exist for this vulnerable population. Recognizing the similarities between mental health and palliative care should lead to collaborative ventures and discussions in an attempt to address common and parallel issues.

Caregiving at the end of life: perspectives from spousal caregivers and care recipients.

OBJECTIVE: The purpose of this study is to examine the perspectives of both the spousal caregiver and care recipient on the caregiving experience in home-based palliative care. METHODS: A qualitative research strategy involving home-based face-to-face interviews with older palliative care patients and their spousal caregivers was used to examine the caregiving experience. RESULTS: Ten spousal caregivers and care recipient dyads participated in the study. Most informal caregivers viewed caregiving as an extension of the family relationship where caregiving responsibilities evolved over time. Spousal caregivers identified many negative reactions to caregiving, such as fatigue or weariness, depression, anger and sadness, financial stresses, and lack of time. Care recipients acknowledged the emotional and financial strain and expressed concern for their spouses. Both caregivers and care recipients were appreciative of home care services although they identified the need for additional services. They also identified difficulties in communication with formal providers and poor coordination of care among the various services. Both caregivers and care recipients disclosed some challenges with informal supports, but on the whole felt that their presence was positive. Additional positive aspects of caregiving reported by spouses included strengthened relationship with their spouse and discovering emotional strength and physical abilities in managing care. SIGNIFICANCE OF RESULTS: Health care and social service professionals need to recognize and understand both caregiver and care recipient perspectives if they are to successfully meet the needs of both members of the dyad.

Full-field digital mammography on LCD versus CRT monitors.

OBJECTIVE: Our purpose was to determine if the display of full-field digital mammograms on a 5-megapixel liquid crystal display (LCD) monitor is at least equivalent to the display of the same on a 5-megapixel cathode ray tube (CRT) monitor. MATERIALS AND METHODS: Five radiologists evaluated normal anatomy and features of 61 abnormalities in 48 full-field digital mammograms. A 9-point Likert scale was used to compare images on two identical soft-copy review workstations, one equipped with two 5-megapixel CRTs and the other with two 5-megapixel LCDs. Outcomes were evaluated using a random-effects analysis of variance model. Means and SEs were reported. Ninety-five percent confidence intervals and p values were calculated. RESULTS: The two systems were equivalent for most features. The LCDs were rated better for the sharpness of mass margins (p = 0.011) and mass conspicuity (p = 0.050). For calcium features, the LCDs were rated better than the CRTs for lesion conspicuity (p = 0.010) and number of calcifications (p = 0.043). For architectural distortions, there was no statistically significant difference between the monitors in any of the features evaluated. For display characteristics, the LCDs were better for luminance (p = 0.021). The CRTs were significantly better for image noise (p = 0.001). In the overall ratings, there was no statistically significant difference between the two displays. CONCLUSION: The 5-megapixel monochrome active-matrix LCD is equivalent to and in some respects better than the 5-megapixel CRT display for full-field digital mammograms over a range of normal and abnormal findings.

Of rats and men: A narrative journey.

Palliative care clinicians are often challenged in this evidence-based world to find studies that are generalizable to our population. And yet, there is much to be learned from the unique situations that we encounter. This narrative reflects upon the application of palliative principles to one special rat model.

Hospitalization and emergency department visits among seniors receiving homecare: a pilot study.

BACKGROUND: Despite the recent growth in home health services, data on clinical outcomes and acute health care utilization among older adults receiving homecare services are sparse. Obtaining such data is particularly relevant in Ontario where an increasing number of frail seniors receiving homecare are awaiting placement in long-term care facilities. In order to determine the feasibility of a large-scale study, we conducted a pilot study to assess utilization of acute health care services among seniors receiving homecare to determine associated clinical outcomes. METHODS: This prospective cohort study followed forty-seven seniors admitted to homecare by two homecare agencies in Hamilton, Ontario over a 12-month period. Demographic information and medical history were collected at baseline, and patients were followed until either termination of homecare services, death, or end of study. The primary outcome was hospitalization. Secondary outcomes included emergency department visits that did not result in hospitalization and death. Rates of hospitalization and emergency department visits without admission were calculated, and univariate analyses were performed to test for potential risk factors. Survival curves for accumulative rates of hospitalization and emergency department visits were created. RESULTS: 312 seniors were eligible for the study, of which 123 (39%) agreed to participate initially. After communicating with the research nurse, of the 123 who agreed to participate initially, 47 (38%) were enrolled in the study. Eleven seniors were hospitalized during 3,660 days of follow-up for a rate of 3.0 incident hospitalizations per 1,000 homecare-days. Eleven seniors had emergency department visits that did not result in hospitalization, for a rate of 3.3 incident emergency department visits per 1,000 homecare-days. There were no factors significantly associated with hospitalization or emergency department visits when adjustment was made for multiple comparisons. CONCLUSION: The incidence of hospitalization and visits to the emergency department among seniors receiving homecare services is high. Getting satisfactory levels of enrollment will be a major challenge for larger prospective studies.

Service preferences among family caregivers of the terminally ill.

OBJECTIVE: The ability of families to assume caregiving responsibilities is contingent on material, social, and professional support. Inadequate or inappropriate support to the terminally ill and their family caregivers can result in the misuse of resources and add burden to the family. In this report, we describe service preferences among informal caregivers of the terminally ill. DESIGN: Three hundred seventy-three caregivers participated in telephone interviews at two points in time: when the terminally ill person was designated as palliative and 5 months subsequent to the first interview. In the case that the care recipient died during the study period, the caregiver participated in the interview three months after the death. MEASURES: After reviewing possible services received by the care recipients and caregivers, caregivers were asked to identify the five services they found most valuable and which services they would have liked to have had or received more of when caregiving. RESULTS: The five services caregivers reported as most valuable included: in-home nursing care, (90.7%); family physicians, (45.6%); medical specialists, (46.4%); housekeeping, (23.6%); and, religious support, (11.3%). The five most frequently reported services that family caregivers would have liked to have received or had more available included: housekeeping, (13.1%); caregiver respite, (10.2%); in-home nursing care, (8.0%); personal support workers, (4.6%); and, self-help/support groups, (3.8%). Analyses revealed that most (64.8%) perceived service needs were of a supportive nature for caregivers. Caregiver perceptions of the value and perceived need of services were consistent over time and into bereavement. Logistic regression analyses suggested that younger caregivers who were not employed, reported higher levels of burden and cared for someone with a diagnosis of cancer had greater perceived service needs. CONCLUSIONS: The findings reported in this paper provide important insights into caregiver perceptions of valued services when caring for a terminally ill family member. These finding also highlight the stability of caregiver service perceptions over time and into bereavement.

Can computer-aided detection with double reading of screening mammograms help decrease the false-negative rate? Initial experience.

PURPOSE: To retrospectively evaluate the role of computer-aided detection (CAD) in reducing the rate of false-negative (FN) findings on screening mammograms considered normal at initial double reading. MATERIALS AND METHODS: At the authors' institution, independent prospective double readings in which the second reader is not blinded to results of the first reading are performed routinely for all mammograms. When cancer is diagnosed, prior mammograms also are reviewed with double reading to determine cancer visibility. Findings are categorized as (a) no evidence of cancer on any prior screening mammogram and patient presents more than 1 year after prior screening, (b) no evidence of cancer on any prior screening mammogram and patient presents with symptoms within 1 year after prior screening (year-interval occult false-negative), or (c) cancer visible. The clinical director separately evaluates each case in the same way. In 2000, 519 histologically proved breast cancers were diagnosed, including 132 for which patients sought a second opinion and FN findings were not tracked. Prior screening mammograms were available in 318 of the other 387 cases. Five radiologists in two reading sessions independently reviewed current and prior mammograms to categorize visible cancers as either threshold or actionable FN findings. Visible cancers deemed actionable by at least three of five readers were analyzed with a commercially available CAD system. FN rates were calculated prior to and after CAD analysis. RESULTS: Twenty-seven occult and 71 visible cancers were found (total FN findings, 98). Three of five readers considered 52 (73%) of 71 visible cancers actionable. The CAD system correctly marked 37 (71%) of these 52 on prior screening mammograms (19 [65%] of 29 masses, seven [88%] of eight microcalcifications, seven [78%] of nine architectural distortions, and four [67%] of six masses with microcalcifications). The FN rate was 98 (31%) of 318 before CAD and 61 (19%) of 318 after CAD. CONCLUSION: In this retrospective review of this small subset of cancers, it appears that CAD has the potential to decrease the FN rate at double reading by more than one-third (from 31% to 19%). The CAD system correctly marked 37 (71%) of 52 actionable findings read as negative in previous screening years.

Factors associated with home death for individuals who receive home support services: a retrospective cohort study.

OBJECTIVES: To determine the factors associated with a home death among older adults who received palliative care nursing home services in the home. METHODS: The participants in this retrospective cohort study were 151 family caregivers of patients who had died approximately 9 months prior to the study telephone interview. The interview focused on the last year of life and covered two main areas, patient characteristics and informal caregiver characteristics. RESULTS: Odds ratios [OR] and 95% confidence intervals [95% CI] were used to determine which of the 15 potential informal caregiver and seven patient predictor variables were associated with dying at home. Multivariate analysis revealed that the odds of dying at home were greater when the patient lived with a caregiver [OR = 7.85; 95% CI = (2.35, 26.27)], the patient stated a preference to die at home [OR= 6.51; 95% CI = (2.66,15.95)], and the family physician made home visits [OR = 4.79; 95% CI = (1.97,11.64)]. However the odds were lower for patients who had caregivers with fair to poor health status [OR = 0.22; 95% CI = (0.07, 0.65)] and for patients who used hospital palliative care beds [OR = 0.31; 95% CI = (0.12, 0.80)]. DISCUSSION: The findings suggest that individuals who indicated a preference to die at home and resided with a healthy informal caregiver had better odds of dying at home. Home visits by a family physician were also associated with dying at home.

Correlates of health status for family caregivers in bereavement.

The purpose of this retrospective cohort study was to identify aspects of caregiving associated with health status among family caregivers in bereavement. Study participants included 151 family caregivers of terminally ill patients who had died, on average, 294 days prior to the study telephone interview. The interview covered two main areas: patient characteristics and caregiver characteristics. Multivariate linear regressions revealed that as the age of the care recipient (regression coefficient [b] = -0.32; 95% confidence interval [CI] -0.48,-0.15) and caregiver (b = -0.14; 95% CI = -0.25, -0.02) increased, caregivers experienced a decline in their physical health during bereavement. Furthermore, caregivers who reported that caregiving interrupted their usual activities (b = -5.97; 95% CI = -9.79, -2.15) had a decline in physical health during bereavement. A poorer mental health status during bereavement was seen in caregivers who reported poor physical health during caregiving (b = -4.31; 95% CI = -8.17, -0.45); and that they received insufficient family support in caregiving (b = -6.01; 95% CI = -9.75, -2.27). It was also revealed that a home death was associated with higher mental health of the caregiver (b = 3.55; 95% CI = 0.26, 6.84). The practice implications of these findings are discussed in this paper.