Voices lost: where is the person in evaluating a palliative approach to care?

Person-centredness is a cornerstone to a palliative approach to care. However, there is a risk that a person-centred perspective is lost in how a palliative approach is evaluated. We explored the extent to which evaluations of a palliative approach are consistent with its person-centred ethical stance. Using a narrative review approach, we critically reflected on how the experiences, priorities and concerns of patients and family are represented, or not represented, in evaluations of a palliative approach. We were guided by the following questions: (1) What types of outcomes and indicators are commonly used to evaluate a palliative approach? (2) Whose perspectives are represented in current evaluations of a palliative approach? And (3) What are the foci of evaluation in this body of research? We observed that the evaluations of a palliative approach are commonly based on indicators of its implementation and predominantly reflect the perspectives of healthcare providers and healthcare systems, rather than patients or family. Although evaluations focused on healthcare providers and systems are important for integrating a palliative approach, there is concern that the essence of person-centredness is lost when the perspectives of patients and families about their healthcare needs, outcomes and experiences are not consistently measured as the ultimate goal of care. There is a need for more emphasis on evaluation practices that value person-centred outcomes, in addition to outcomes oriented to the needs of healthcare providers and systems.

Shifts in Homecare Nursing Practices and Their Implications for Families and Clients Receiving Palliative Care at Home.

Homecare nurses provide essential healthcare services at home. Changes in the nature of homecare nursing practice, however, suggest that older and frail homecare clients are less likely to have timely access to needed homecare nursing services as acute management takes priority. This has an impact on people's ability to be cared for and to die at home, a reported priority for many Canadians. This study highlights how health system changes may be constraining homecare nurses' abilities to enact care that is consistent with palliative care principles and philosophies, and calls for consideration of how shifts in homecare nursing practice have implications for families and clients receiving palliative care at home.

A codevelopment process to advance methods for the use of patient-reported outcome measures and patient-reported experience measures with people who are homeless and experience chronic illness.

INTRODUCTION: People who experience social disadvantage including homelessness suffer from numerous ill health effects when compared to the general public. Use of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) enables collection of information from the point of view of the person receiving care. Involvement in research and health care decision-making, a process that can be facilitated by the use of PROMs and PREMs, is one way to promote equity in care. METHODS: This article reports on a codevelopment and consultation study investigating the use of PROMs and PREMs with people who experience homelessness and chronic illness. Data were analysed according to interpretative phenomenological analysis. RESULTS: Committee members with lived experience identified three themes for the role of PROMs and PREMs in health care measurement: trust and relationship-building; health and quality of life; and equity, alongside specific recommendations for the design and administration of PROMs and PREMs. The codevelopment process is reported to demonstrate the meaningful investment in time, infrastructure and relationship-building required for successful partnership between researchers and people with lived experience of homelessness. CONCLUSION: PROMs and PREMs can be meaningful measurement tools for people who experience social disadvantage, but can be alienating or reproduce inequity if they fail to capture complexity or rely on hidden assumptions of key concepts. PATIENT OR PUBLIC CONTRIBUTION: This study was conducted in active partnership between researchers and people with experience of homelessness and chronic illness, including priority setting for study design, data construction, analysis and coauthorship on this article.

A scoping review of palliative care for persons with severe persistent mental illness.

OBJECTIVE: People with severe persistent mental illness (SPMI) experience a greater burden and severity of chronic disease, late diagnosis, and premature death compared with the general population. Those with SPMI also receive fewer medical treatments, poor quality of care, and are less likely to receive palliative care. A systematic scoping review was undertaken to determine the extent, range, and nature of research activity about people with SPMI requiring palliative care, and to identify gaps and opportunities for future research. METHOD: A systematic scoping review was undertaken in September 2017 and updated in May 2018 to map literature on this topic, determine the extent and range of what has been published, and report the findings. This five-stage framework was conducted by (1) identifying the research question; (2) identifying relevant studies; (3) determining study selection; (4) charting the data; and 5) collating, summarizing, and reporting the results. A narrative approach to analysis was used to synthesize and interpret findings. A search of multidisciplinary healthcare databases resulted in 46 included articles. RESULT: Four major themes were identified from the included studies: complexity of care; limited access to care (both through systems and healthcare providers); competence and autonomy; and the potential for relationships between mental health and palliative care. SIGNIFICANCE OF RESULTS: This review reveals a highly vulnerable population with complex needs that are not reliably being met by the healthcare system and providers. Research in this area must continue to develop using rigorous qualitative and quantitative study designs, and interventions should be developed and tested based on existing knowledge to inform care. The voices of people with SPMI in need of palliative care must be represented in future studies to address gaps. To expand a body of literature addressing mainly individuals, system perspectives and sociocultural analysis can bring much to contextualizing the experience of living with SPMI in the palliative phase of care. Adoption of a palliative approach, which promotes the principles of palliative care across nonspecialized care settings provided by nonspecialist palliative providers, has the potential to increase access to high-quality palliative treatment for people with SPMI.

Helping Patients and Families Understand the Financial Impact of End-of-Life Care.

Planning ahead is crucial-nurses can provide information and resources.

A systematic review of the cost-effectiveness of nurse practitioners and clinical nurse specialists: what is the quality of the evidence?

Background. Improved quality of care and control of healthcare costs are important factors influencing decisions to implement nurse practitioner (NP) and clinical nurse specialist (CNS) roles. Objective. To assess the quality of randomized controlled trials (RCTs) evaluating NP and CNS cost-effectiveness (defined broadly to also include studies measuring health resource utilization). Design. Systematic review of RCTs of NP and CNS cost-effectiveness reported between 1980 and July 2012. Results. 4,397 unique records were reviewed. We included 43 RCTs in six groupings, NP-outpatient (n = 11), NP-transition (n = 5), NP-inpatient (n = 2), CNS-outpatient (n = 11), CNS-transition (n = 13), and CNS-inpatient (n = 1). Internal validity was assessed using the Cochrane risk of bias tool; 18 (42%) studies were at low, 17 (39%) were at moderate, and eight (19%) at high risk of bias. Few studies included detailed descriptions of the education, experience, or role of the NPs or CNSs, affecting external validity. Conclusions. We identified 43 RCTs evaluating the cost-effectiveness of NPs and CNSs using criteria that meet current definitions of the roles. Almost half the RCTs were at low risk of bias. Incomplete reporting of study methods and lack of details about NP or CNS education, experience, and role create challenges in consolidating the evidence of the cost-effectiveness of these roles.

A systematic review of the effectiveness of advanced practice nurses in long-term care.

AIM: To report quantitative evidence of the effectiveness of advanced practice nursing roles, clinical nurse specialists and nurse practitioners, in meeting the healthcare needs of older adults living in long-term care residential settings. BACKGROUND: Although studies have examined the effectiveness of advanced practice nurses in this setting, a systematic review of this evidence has not been conducted. DESIGN: Quantitative systematic review. DATA SOURCES: Twelve electronic databases were searched (1966-2010); leaders in the field were contacted; and personal files, reference lists, pertinent journals, and websites were searched for prospective studies with a comparison group. REVIEW METHODS: Studies that met inclusion criteria were reviewed for quality, using a modified version of the Cochrane Effective Practice and Organisation of Care Review Group risk of bias assessment criteria. RESULTS: Four prospective studies conducted in the USA and reported in 15 papers were included. Long-term care settings with advanced practice nurses had lower rates of depression, urinary incontinence, pressure ulcers, restraint use, and aggressive behaviours; more residents who experienced improvements in meeting personal goals; and family members who expressed more satisfaction with medical services. CONCLUSION: Advanced practice nurses are associated with improvements in several measures of health status and behaviours of older adults in long-term care settings and in family satisfaction. Further exploration is needed to determine the effect of advanced practice nurses on health services use; resident satisfaction with care and quality of life; and the skills, quality of care, and job satisfaction of healthcare staff.