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.

Self-Perceived Competence of Nurses and Care Aides Providing a Palliative Approach in Home, Hospital, and Residential Care Settings: A Cross-Sectional Survey.

BACKGROUND AND PURPOSE: A palliative approach involves adapting and integrating palliative care knowledge and expertise earlier on and across sectors of care for people who have life-limiting chronic conditions. This study explored the extent to which nurses' and care aides' self-perceived palliative care competence may explain variation in the application of a palliative approach across nursing care settings that do not specialize in palliative care. A secondary objective was to psychometrically evaluate an instrument for measuring self-perceived palliative care competence.Methods and procedures: Data were collected via a cross-sectional survey (N = 1468) of registered nurses, licensed practical nurses, and care aides at 114 randomly selected hospital-based medical units, home care offices, and residential care facilities. The questionnaire included the Palliative Care Nursing Self-Competence Scale. Multilevel logistic regression and multigroup confirmatory factor analyses were conducted. RESULTS: In addition to self-perceived competence, factors associated with a palliative approach include identification of patients who have life-limiting conditions and who would benefit from a palliative approach, and work environment. The psychometric analyses of the Palliative Care Nursing Self-Competence Scale confirmed a 10-dimensional structure, strong internal consistency reliability, and measurement equivalence.Discussion and conclusion: This study provides information for future development and research on interventions for integrating a palliative approach.

Choosing Educational Resources to Build Interprofessional, Palliative Care Competency: A Replicable Review Methodology.

AIM/OBJECTIVE: The purpose of the project was to provide information to inform the choice of educational resources available in British Columbia to support palliative care competency development for 4 disciplines: nurses, physicians, health care assistants, and social workers/counsellors. This article will describe the process of resource review. Results of the review are available at https://www.bc-cpc.ca/cpc/education-resource-review/. The objectives were to (1) identify gaps common to all educational resources, (2) provide information on content addressing competencies as well as logistics such as time required, cost, delivery method, and training requirements for instructors, and (3) develop a reproducible process for assessment of educational resources which is unbiased, transparent, and competency based. METHOD: Sixteen educational resources were assessed for the percentage of competencies that were addressed. Gaps common to all resources were identified. RESULTS: The review process is described and can be replicated when assessing future versions of these and other palliative continuing education courses. This is a reproducible methodology for review of competency-based educational resources which could be applied for any practice-related subject. CONCLUSION: This review process provided information which can inform a provincial interprofessional palliative education plan. The methodology may be used by others to assess and choose between competency-based education resources with a palliative population focus and other patient population foci.

Validation of quality indicators for end-of-life communication: results of a multicentre survey.

BACKGROUND: The lack of validated quality indicators is a major barrier to improving end-of-life communication and decision-making. We sought to show the feasibility of and provide initial validation for a set of quality indicators related to end-of-life communication and decision-making. METHODS: We administered a questionnaire to patients and their family members in 12 hospitals and asked them about advance care planning and goals-of-care discussions. Responses were used to calculate a quality indicator score. To validate this score, we determined its correlation with the concordance between the patients' expressed wishes and the medical order for life-sustaining treatments recorded in the hospital chart. We compared the correlation with concordance for the advance care planning component score with that for the goal-of-care discussion scores. RESULTS: We enrolled 297 patients and 209 family members. At all sites, both overall quality indicators and individual domain scores were low and there was wide variability around the point estimates. The highest-ranking institution had an overall quality indicator score (95% confidence interval) of 40% (36%-44%) and the lowest had a score of 18% (11%-25%). There was a strong correlation between the overall quality indicator score and the concordance measure (r = 0.72, p = 0.008); the estimated correlation between the advance care planning score and the concordance measure (r = 0.35) was weaker than that between the goal-of-care discussion scores and the concordance measure (r = 0.53). INTERPRETATION: Quality of end-of-life communication and decision-making appears low overall, with considerable variability across hospitals. The proposed quality indicator measure shows feasibility and partial validity. Study registration: ClinicalTrials.gov, no. NCT01362855.

Design and introduction of a quality of life assessment and practice support system: perspectives from palliative care settings.

BACKGROUND: Quality of life (QOL) assessment instruments, including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs), are increasingly promoted as a means of enabling clinicians to enhance person-centered care. However, integration of these instruments into palliative care clinical practice has been inconsistent. This study focused on the design of an electronic Quality of Life and Practice Support System (QPSS) prototype and its initial use in palliative inpatient and home care settings. Our objectives were to ascertain desired features of a QPSS prototype and the experiences of clinicians, patients, and family caregivers in regard to the initial introduction of a QPSS in palliative care, interpreting them in context. METHODS: We applied an integrated knowledge translation approach in two stages by engaging a total of 71 clinicians, 18 patients, and 17 family caregivers in palliative inpatient and home care settings. Data for Stage I were collected via 12 focus groups with clinicians to ascertain desirable features of a QPSS. Stage II involved 5 focus groups and 24 interviews with clinicians and 35 interviews with patients or family caregivers during initial implementation of a QPSS. The focus groups and interviews were recorded, transcribed, and analyzed using the qualitative methodology of interpretive description. RESULTS: Desirable features focused on hardware (lightweight, durable, and easy to disinfect), software (simple, user-friendly interface, multi-linguistic, integration with e-health systems), and choice of assessment instruments that would facilitate a holistic assessment. Although patient and family caregiver participants were predominantly enthusiastic, clinicians expressed a mixture of enthusiasm, receptivity, and concern regarding the use of a QPSS. The analyses revealed important contextual considerations, including: (a) logistical, technical, and aesthetic considerations regarding the QPSS as a technology, (b) diversity in knowledge, skills, and attitudes of clinicians, patients, and family caregivers regarding the integration of electronic QOL assessments in care, and (c) the need to understand organizational context and priorities in using QOL assessment data. CONCLUSION: The process of designing and integrating a QPSS in palliative care for patients with life-limiting conditions and their family caregivers is complex and requires extensive consultation with clinicians, administrators, patients, and family caregivers to inform successful implementation.

Embedding a Palliative Approach in Nursing Care Delivery: An Integrated Knowledge Synthesis.

A palliative approach involves adapting and integrating principles and values from palliative care into the care of persons who have life-limiting conditions throughout their illness trajectories. The aim of this research was to determine what approaches to nursing care delivery support the integration of a palliative approach in hospital, residential, and home care settings. The findings substantiate the importance of embedding the values and tenets of a palliative approach into nursing care delivery, the roles that nurses have in working with interdisciplinary teams to integrate a palliative approach, and the need for practice supports to facilitate that embedding and integration.

Conceptual foundations of a palliative approach: a knowledge synthesis.

BACKGROUND: Much of what we understand about the design of healthcare systems to support care of the dying comes from our experiences with providing palliative care for dying cancer patients. It is increasingly recognized that in addition to cancer, high quality end of life care should be an integral part of care that is provided for those with other advancing chronic life-limiting conditions. A "palliative approach" has been articulated as one way of conceptualizing this care. However, there is a lack of conceptual clarity regarding the essential characteristics of a palliative approach to care. The goal of this research was to delineate the key characteristics of a palliative approach found in the empiric literature in order to establish conceptual clarity. METHODS: We conducted a knowledge synthesis of empirical peer-reviewed literature. Search terms pertaining to "palliative care" and "chronic life-limiting conditions" were identified. A comprehensive database search of 11 research databases for the intersection of these terms yielded 190,204 documents. A subsequent computer-assisted approach using statistical predictive classification methods was used to identify relevant documents, resulting in a final yield of 91 studies. Narrative synthesis methods and thematic analysis were used to then identify and conceptualize key characteristics of a palliative approach. RESULTS: The following three overarching themes were conceptualized to delineate a palliative approach: (1) upstream orientation towards the needs of people who have life-limiting conditions and their families, (2) adaptation of palliative care knowledge and expertise, (3) operationalization of a palliative approach through integration into systems and models of care that do not specialize in palliative care. CONCLUSION: Our findings provide much needed conceptual clarity regarding a palliative approach. Such clarity is of fundamental importance for the development of healthcare systems that facilitate the integration of a palliative approach in the care of people who have chronic life-limiting conditions.

Improving End-of-Life Communication and Decision Making: The Development of a Conceptual Framework and Quality Indicators.

CONTEXT: The goal of end-of-life (EOL) communication and decision making is to create a shared understanding about a person's values and treatment preferences that will lead to a plan of care that is consistent with these values and preferences. Improvements in communication and decision making at the EOL have been identified as a high priority from a patient and family point of view. OBJECTIVES: The purpose of this study was to develop quality indicators related to EOL communication and decision making. METHODS: We convened a multidisciplinary panel of experts to develop definitions, a conceptual framework of EOL communication and decision making, and quality indicators using a modified Delphi method. We generated a list of potential items based on literature review and input from panel members. Panel members rated the items using a seven-point Likert scale (1 = very little importance to 7 = extremely important) over four rounds of review until consensus was achieved. RESULTS: About 24 of the 28 panel members participated in all four rounds of the Delphi process. The final list of quality indicators comprised 34 items, divided into the four categories of our conceptual framework: Advance care planning (eight items), Goals of care discussions (13 items), Documentation (five items), and Organization/System aspects (eight items). Eleven items were rated "extremely important" (median score). All items had a median score of five (moderately important) or greater. CONCLUSION: We have developed definitions, a conceptual framework, and quality indicators that researchers and health care decision makers can use to evaluate and improve the quality of EOL communication and decision making.

What do Canadians think of advanced care planning? Findings from an online opinion poll.

BACKGROUND: Advance care planning (ACP) has the potential to increase patient-centred care, reduce caregiver burden, and reduce healthcare costs at the end of life. Current levels of public participation in ACP activities are unknown. The purpose of this study was to determine the level of engagement of average Canadians in ACP activities. METHODS: Data come from an on-line opinion poll of a national sample of respondents who were asked five questions on ACP activities along with their sociodemographic characteristics. RESULTS: Respondents were from all provinces of Canada, 52% were women, and 33% were between 45 years and 54 years of age. Of 1021 national sample respondents, 16% were aware of the term, ACP (95% CI 13% to 18%), 52% had discussions with their family or friends (95% CI 49% to 55%), and 10% had discussions with healthcare providers (95% CI 8% to 12%). Overall, 20% (95% CI 18% to 22%) of respondents had a written ACP and 47% (95% CI 44% to 50%) had designated a substitute decision maker. Being older was associated with significantly more engagement in ACP activities and there were significant differences in ACP engagement across Canada. CONCLUSIONS: Although only a small proportion of Canadians are aware of the formal term, ACP, a higher percentage of Canadians are actually engaged in ACP, through either having discussions or making decisions about end-of-life care. Older citizens are more likely to be engaged in ACP and there are geographic differences in the level of ACP engagement across Canada.

Taking an "upstream" approach in the care of dying cancer patients: the case for a palliative approach.

Advances in technology and drug therapy have resulted in cancer patients living longer with malignant disease. However, most of these patients will face the end of life much sooner than the general population. Adopting a "palliative approach" is one innovation that has the potential to promote anticipatory planning and promote enhanced end-of-life care. Yet, in much of the western world, this upstream orientation has rarely been achieved. An emphasis on providing palliative care late in the illness trajectory has resulted in many challenges for the care of people with advanced cancer. We highlight a nursing research initiative, The Initiative for a Palliative Approach in Nursing: Evidence and Leadership (iPANEL), that aims to develop evidence to inform the integration of a palliative approach into the care of people with advancing chronic life-limiting conditions. Oncology nurses have an important role to play in facilitating a palliative approach, transforming the ways in which cancer patients are cared for within our health care system.

Failure to engage hospitalized elderly patients and their families in advance care planning.

IMPORTANCE: Advance care planning can improve patient-centered care and potentially reduce intensification of care at the end of life. OBJECTIVES: To inquire about patients' advance care planning activities before hospitalization and preferences for care from the perspectives of patients and family members, as well as to measure real-time concordance between expressed preferences for care and documentation of those preferences in the medical record. DESIGN: Prospective study. SETTING: Twelve acute care hospitals in Canada. PARTICIPANTS: Elderly patients who were at high risk of dying in the next 6 months and their family members. MAIN OUTCOME MEASURES: Responses to an in-person administered questionnaire and concordance of expressed preferences and orders of care documented in the medical record. RESULTS: Of 513 patients and 366 family members approached, 278 patients (54.2%) and 225 family members (61.5%) consented to participate. The mean ages of patients and family members were 80.0 and 60.8 years, respectively. Before hospitalization, most patients (76.3%) had thought about end-of-life (EOL) care, and only 11.9% preferred life-prolonging care; 47.9% of patients had completed an advance care plan, and 73.3% had formally named a surrogate decision maker for health care. Of patients who had discussed their wishes, only 30.3% had done so with the family physician and 55.3% with any member of the health care team. Agreement between patients' expressed preferences for EOL care and documentation in the medical record was 30.2%. Family members' perspectives were similar to those of patients. CONCLUSIONS AND RELEVANCE: Many elderly patients at high risk of dying and their family members have expressed preferences for medical treatments at the EOL. However, communication with health care professionals and documentation of these preferences remains inadequate. Efforts to reduce this significant medical error of omission are warranted.

Toward a population-based approach to end-of-life care surveillance in Canada: initial efforts and lessons.

This paper describes a project undertaken by the Hospice Palliative End-of-Life Care Surveillance Team Network--one of four Cancer Surveillance and Epidemiology Networks established by the Canadian Partnership Against Cancer in 2009 to create information products that can be used to inform cancer control. The project was designed to improve the quality and use of existing electronic patient databases in its member organizations. The project's intent was to better understand terminally ill cancer patients in their final year of life, with noncancer as comparison. The network created an early design for a Web-based end-of-life care surveillance system prototype. Using a flagging process, anonymized data sets on cancer/ noncancer palliative patients and those who died in 2008-2009 were extracted and analyzed. The Australian palliative approach was adapted as the conceptual model based on the data sets available. Common data elements were defined then mapped to local data sets to create a common data set. Information products were created as online reports. Throughout the project, members were engaged in knowledge translation. Overall, the project was well received by network members. There are still major data-quality and linkage issues that require further work.

Implications for the delivery of spiritual care in Canadian healthcare: a perspective from a Canadian health authority.

Recognizing multiple challenges in the delivery of spiritual care, Fraser Health conducted a review of their spiritual care services in comparison to the spiritual care delivered in other Canadian health regions/authorities (2005-2006). Based on data received from the other health service areas, Fraser Health staff, and community focus groups, along with a review of literature and best practices, a reconstruction of spiritual care delivery has been initiated. This article outlines the results of a Canadian survey of health care chaplains, stakeholder consultations, and the implications for spiritual care delivery in Canada. The newly developed Fraser Health Tenets and Model for Spiritual Care, along with the recommendations of the project for the reconstruction and enhancement of spiritual care delivery in Fraser Health are discussed.

Telenursing in hospice palliative care.

During the last months of life, many people with advanced illness will be living in their homes. Coping with changing symptoms, and ultimately preparing for death, becomes part of daily life. Whether the ill person is at home for days or for months, they depend on family or friends to be primary caregivers, supported by home-based services. However, after physician and home health offices close, many patients and their caregivers are left to cope alone. The authors describe an innovative partnership between B.C. NurseLine (a provincial tele-triage and health information call centre), the British Columbia Ministry of Health and Fraser Health Hospice Palliative Care program that created after-hours access to care for dying patients and their families in one of Canada's largest health authorities. The article outlines how information and communications technology enabled merging the capacity and expertise of B.C. NurseLine with the expertise of specialized community-based palliative care services to achieve outcomes of improved symptom management, decreased visits to emergency rooms and enhanced support for families who are caring for loved ones at home. For nurses caring for home-based patients, there are lessons to be learned about how to maximize technology to create systems that both improve access to care and are sustainable in the future.