Search

Context Palliative care access is fundamental to the highest attainable standard of health and a core component of universal health coverage. Forging universal palliative care access is insurmountable without strategically optimizing the nursing workforce and integrating palliative nursing into health systems at all levels. The COVID-19 pandemic has underscored both the critical need for accessible palliative care to alleviate serious health-related suffering and the key role of nurses to achieve this goal. Objectives 1) Summarize palliative nursing contributions to the expansion of palliative care access; 2) identify emerging nursing roles in alignment with global palliative care recommendations and policy agendas; 3) promote nursing leadership development to enhance universal access to palliative care services. Methods Empirical and policy literature review; best practice models; recommendations to optimize the palliative nursing workforce. Results Nurses working across settings provide a considerable untapped resource that can be leveraged to advance palliative care access and palliative care program development. Best practice models demonstrate promising approaches and outcomes related to education and training, policy and advocacy, and academic-practice partnerships. Conclusion An estimated 28 million nurses account for 59% of the international healthcare workforce and deliver up to 90% of primary health services. It has been well-documented that nurses are often the first or only healthcare provider available in many parts of the world. Strategic investments in international and interdisciplinary collaboration, as well as policy changes and the safe expansion of high-quality nursing care, can optimize the efforts of the global nursing workforce to mitigate serious health-related suffering.

© 2014 American Academy of Hospice and Palliative Medicine. Context. Delirium is underrecognized by nurses, including those working in palliative care settings where the syndrome occurs frequently. Identifying contextual factors that support and/or hinder palliative care nurses' delirium recognition and assessment capabilities is crucial, to inform development of clinical practice and systems aimed at improving patients' delirium outcomes.Objectives. The aim of the study was to identify nurses' perceptions of the barriers and enablers to recognizing and assessing delirium symptoms in palliative care inpatient settings.Methods. A series of semistructured interviews, guided by critical incident technique, were conducted with nurses working in Australian palliative care inpatient settings. A hypoactive delirium vignette prompted participants' recall of delirium and identification of the perceived factors (barriers and enablers) that impacted on their delirium recognition and assessment capabilities. Thematic content analysis was used to analyze the qualitative data.Results. Thirty participants from nine palliative care services provided insights into the barriers and enablers of delirium recognition and assessment in the inpatient setting that were categorized as patient and family, health professional, and system level factors. Analysis revealed five themes, each reflecting both identified barriers and current and/or potential enablers: 1) value in listening to patients and engaging families, 2) assessment is integrated with care delivery, 3) respecting and integrating nurses' observations, 4) addressing nurses' delirium knowledge needs, and 5) integrating delirium recognition and assessment processes.Conclusion. Supporting the development of palliative care nursing delirium recognition and assessment practice requires attending to a range of barriers and enablers at the patient and family, health professional, and system levels.

Context Cancer pain is a common, burdensome problem, which is not well managed despite evidence-based guidelines. Objectives To develop insights for managing barriers and optimizing facilitators to adult cancer pain assessment and management within a comprehensive framework of patient care. Methods We undertook a systematic review and synthesis of qualitative studies. Medline, PsycINFO, Embase, AMED, CINAHL, and Sociological Abstracts were searched from May 20 to 26, 2011. To be included, the articles had to be published in a peer-reviewed journal since 2000; written in English; and report original qualitative studies on the perspectives of patients, their significant others, or health care providers. Article quality was rated using the checklist of Kitto et al. Thematic synthesis followed a three-stage approach using Evidence for Policy and Practice Information and Co-ordinating Centre-Reviewer 4 software: 1) free line-by-line coding of "Results," 2) organization into "descriptive" themes, and 3) development of "analytical" themes informative to our objective. At Stage 3, a conceptual framework was selected from the peer-reviewed literature according to prima facie "fit" for descriptive themes. Results Of 659 articles screened, 70 met the criteria, reporting 65 studies with 48 patient, 19 caregiver, and 21 health care provider samples. Authors rarely reported reflexivity or negative cases. Mead and Bower's model of patient-centered care accommodated 85% of the descriptive themes; 12% more related to the caregiver and service/system factors. Three themes could not be accommodated. Conclusion Findings highlight the need to integrate patient/family education within improved communication, individualize care, use more nonpharmacological strategies, empower patients/families to self-manage pain, and reorganize multidisciplinary roles around patient-centered care and outcomes. These conclusions require validation via consensus and intervention trials.

Systematic reviews and meta-analyses suggest that community specialist palliative care services (SPCSs) can avoid hospitalizations and enable home deaths. But more information is needed regarding the relative efficacies of different models. Family caregivers highlight home nursing as the most important service, but it is also likely the most costly.To establish whether community SPCSs offering home nursing increase rates of home death compared with other models.We searched MEDLINE, AMED, Embase, CINAHL, the Cochrane Database of Systematic Reviews, and CENTRAL on March 2 and 3, 2011. To be eligible, articles had to be published in English-language peer-reviewed journals and report original research comparing the effect on home deaths of SPCSs providing home nursing vs. any alternative. Study quality was independently rated using Cochrane grades. Maximum likelihood estimation of heterogeneity was used to establish the method for meta-analysis (fixed or random effects). Potential biases were assessed.Of 1492 articles screened, 10 articles were found eligible, reporting nine studies that yielded data for 10 comparisons. Study quality was high in two cases, moderate in three and low in four. Meta-analysis indicated a significant effect for SPCSs with home nursing (odds ratio 4.45, 95% CI 3.24-6.11; P0.001). However, the high-quality studies found no effect (odds ratio 1.40, 95% CI 0.97-2.02; P=0.071). Bias was minimal.A meta-analysis found evidence to be inconclusive that community SPCSs that offer home nursing increase home deaths without compromising symptoms or increasing costs. But a compelling trend warrants further confirmatory studies. Future trials should compare the relative efficacy of different models and intensities of SPCSs.

Context: Over the past decade, there has been widespread adoption of end-of-life care pathways as a tool to better manage care of the dying in a variety of care settings. The adoption of various end-of-life care pathways has occurred despite lack of robust evidence for their use. Objectives: This integrative review identified published studies evaluating the impact of an end-of-life care pathway in the acute and hospice care setting from January 1996 to April 2010. Methods: A search of the electronic databases Scopus and Cumulative Index of Nursing and Allied Health Literature as well as Medline and the World Wide Web were undertaken. This search used Medical Subject Headings key words including "end-of-life care," "dying," "palliative care," "pathways," "acute care," and "evaluation." Articles were reviewed by two authors using a critical appraisal tool. Results: The search revealed 638 articles. Of these, 26 articles met the inclusion criteria for this integrative review. No randomized controlled trials were reported. The majority of these articles reported baseline and post implementation pathway chart audit data, whereas a smaller number were local, national, or international benchmarking studies. Most of the studies emerged from the United Kingdom, with a smaller number from the United States, The Netherlands, and Australia. Conclusion: Existing data demonstrate the utility of the end-of-life pathway in improving care of the dying. The absence of randomized controlled trial data, however, precludes definitive recommendations and underscores the importance of ongoing research. © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Performance status is used to quantify the well-being and functional status of people with illness. Clinicians and researchers from differing fields may not instinctively understand the scales, typically disease specific, used in other disciplines.To provide a preliminary description of the relationship between the Karnofsky Performance Status Scale (KPS) and the New York Heart Association Classification (NYHA) and to stimulate discussion in research and clinical practice.Simultaneous KPS and NYHA data (172 observations) from three studies of people with chronic heart failure were pooled. Linear regression was used to predict the mean KPS from NYHA. The strength of association between the scales was investigated using a Kendall's Tau-b correlation coefficient. The agreement between the predicted and observed KPS scores was investigated using weighted kappa with quadratic weights.Linear regression demonstrated a relationship between KPS and NYHA (P 0.0001; R(2) = 0.3). Predicted KPS from NYHA class rounded to the nearest 10 gave the following values: Class I, predicted KPS 90%; Class II, predicted KPS 80%; Class III, predicted KPS 70%; and Class IV, predicted KPS 60%. A moderate strength of association between KPS and NYHA (Kendall's Tau-b correlation coefficient of -0.49; P 0.0001) and agreement between observed and predicted KPS (kappa coefficient = 0.52) was shown.We suggest that the NYHA discriminates poorly between clinically important performance states in people with advanced disease (NYHA III and IV; KPS50%). The KPS, used in conjunction, would provide useful additional information in research and clinical practice.

Context Older women commonly assume a caregiving role for their husbands at the end of life and are more vulnerable to poorer health, well-being, and social and economic challenges. Objectives The aim of this study was to ascertain older women's experiences of spousal caregiving at the end of life and the ways in which this experience impacts on the transition to widowhood. Methods Longitudinal, in-depth, semistructured interviews were conducted with older women three times over a one-year period after the death of their husbands. This report focuses on the initial interviews that examined the transition from caregiving to widowhood. Transcripts were analyzed using interpretive phenomenological analysis methods. Participants were community-dwelling women older than 65 years who had recently been caregivers for their husbands who died within the past two years. Results Older women caregivers described their caregiver role as taxing, particularly in light of their own chronic conditions that they failed to prioritize and address. They did not ask for help in managing their roles and health problems, but quietly endured. Hence, they did not communicate their needs or strains explicitly. The degree of perceived adequacy of communication and interaction with health professionals were important factors impacting on their bereavement. Conclusion It is imperative for health professionals to appreciate that older women caregivers may need more supportive interaction and information during the end-of-life caregiving, they may have expectations of communication, and they may deny or fail to focus on their own health issues. A patient/family/carer-centered approach could negate this oversight and improve the outcomes for these women as they transition into widowhood.

Context Understanding the types and extent of need is critical to informing needs-based care for people with chronic heart failure (CHF). Objectives To explore the psychometric quality of a newly developed rapid screening measure to assess the supportive and palliative care needs of people with CHF. Methods A convenience sample of multidisciplinary health professionals working in heart failure care was invited to comment, via an online survey and consultation, on suitability and required modifications to a validated cancer care needs assessment measure to inform the support and palliative care needs of patients with CHF and their caregivers. Psychometric testing was then undertaken with 52 patients with CHF recruited from a multidisciplinary heart failure service to explore inter-rater reliability and concurrent validity of the newly adapted Needs Assessment Tool: Progressive Disease-Heart Failure (NAT: PD-HF). Results Health professionals (n=21) rated the tool as easy to administer, comprehensive, and relevant for the CHF population. Prevalence- and bias-adjusted kappa values indicated good agreement between pairs of raters for each item in the NAT: PD-HF (range 0.54–0.90). Participants indicating a higher severity of concern in the NAT: PD-HF physical, daily living, and spiritual items reported significantly higher Heart Failure Needs Assessment Questionnaire physical and existential scores. Conclusion This study provides preliminary evidence for the NAT: PD-HF as a potential strategy for identifying and informing the management of physical and psychosocial issues experienced by people with CHF. Further work is needed to examine additional psychometrics, benefits relating to unnecessary symptom burden, futile treatments, and admissions to hospital.

Context: Social relations and networks are vital for sustaining and enhancing end-of-life care. The social capital concept supports a framework to understand the association between social relations and well-being; yet, to date, there has been very limited investigation of social capital in the palliative care literature. A framework for understanding social contexts in end-of-life care is necessary. Objectives: To summarize the literature on social capital, well-being, and quality of life for key outcomes to inform a model of social capital in palliative care. Methods: The electronic databases MEDLINE (1997 to March 2011), Embase (1997 to March 2011), CINAHL (1997 to March 2011), and PsycINFO (1997 to March 2011) were searched using key/MeSH search terms of "social capital," "palliative care," and "well-being" and/or "quality of life." The literature was reviewed to identify key concepts to develop and inform a palliative care social capital framework. Results: A total of 93 articles were included in the literature review, with only two articles identifying discourse on social capital and palliative care. Four key areas integrating the social capital outcomes informed a framework for palliative care. Conclusion: The social capital concept provides a structure for understanding how the organization and meaning of social contexts can potentially enhance or hinder end-of-life care. Research that identifies specificity in application of social capital concepts is fundamental to issues of access to services, sustaining levels of care, quality of life, and well-being. The importance of "bridged" social capital relations and networks for improved resource acquisition and information flow was identified in the literature and outlined within the palliative care social capital framework. Differential access to social capital by disadvantaged groups provides further impetus to engage a model of social capital for palliative care. © 2013 Published by Elsevier Inc. on behalf of U.S. Cancer Pain Relief Committee.

Context: Individuals from low socioeconomic (SE) groups have less resources and poorer health outcomes. Understanding the nature of access to appropriate end-of-life care services for this group is important. Objectives: To evaluate the literature in the developed world for barriers to access for low SE groups. Methods: Electronic databases searched in the review included MEDLINE (1996-2010), CINAHL (1996-2010), PsychINFO (2000-2010), Cochrane Library (2010), and EMBASE (1996-2010). Publications were searched for key terms "socioeconomic disadvantage," "socioeconomic," "poverty," "poor" paired with "end-of-life care," "palliative care," "dying," and "terminal Illness." Articles were analyzed using existing descriptions for dimensions of access to health services, which include availability, affordability, acceptability, and geographical access. Results: A total of 67 articles were identified for the literature review. Literature describing end-of-life care and low SE status was limited. Findings from the review were summarized under the headings for dimensions of access. Conclusion: Low SE groups experience barriers to access in palliative care services. Identification and evaluation of interventions aimed at reducing this disparity is required. © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.