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Social Science & Medicine (1982) Jul 2022The diffusion of palliative care has been rapid, yet uncertainty remains regarding palliative care's "active ingredients." The National Consensus Project Guidelines for...
The diffusion of palliative care has been rapid, yet uncertainty remains regarding palliative care's "active ingredients." The National Consensus Project Guidelines for Quality Palliative Care identified eight domains of palliative care. Despite these identified domains, when pressed to describe the specific maneuvers used in clinical encounters, palliative care providers acknowledge that "it's complex." The field of systems has been used to explain complexity across many different types of systems. Specifically, engineering systems develop a representation of a system that helps manage complexity to help humans better understand the system. Our goal was to develop a system model of what palliative care providers do such that the elements of the model can be described concretely and sequentially, aggregated to describe the high-level domains currently described by palliative care, and connected to the complexity described by providers and the literature. Our study design combined methodological elements from both qualitative research and systems engineering modeling. The model drew on participant observation and debriefing semi-structured interviews with interdisciplinary palliative care team members by a systems engineer. The setting was an interdisciplinary palliative care service in a US rural academic medical center. In the developed system model, we identified 59 functions provided to patients, families, non-palliative care provider(s), and palliative care provider(s). The high-level functions related to measurement, decision-making, and treatment address up to 8 states of an individual, including an overall holistic state, physical state, psychological state, spiritual state, cultural state, personal environment state, and clinical environment state. In contrast to previously described expert consensus domain-based descriptions of palliative care, this model more directly connects palliative care provider functions to emergent behaviors that may explain system-level mechanisms of action for palliative care. Thus, a systems modeling approach provides insights into the challenges surrounding the recurring question of what is in the palliative care "syringe."
Topics: Humans; Interdisciplinary Studies; Palliative Care; Qualitative Research; Rural Population; Syringes
PubMed: 35691210
DOI: 10.1016/j.socscimed.2022.115069 -
Pediatrics Jul 2021Pediatric palliative care (PPC) is integral to the care of children living with serious illnesses. Despite the growth in the number of established palliative care...
BACKGROUND AND OBJECTIVES
Pediatric palliative care (PPC) is integral to the care of children living with serious illnesses. Despite the growth in the number of established palliative care programs over the past decade, little is known about the current operational features of PPC programs across the country.
METHODS
The National Palliative Care Registry collects annualized data on palliative care programs' structures, processes, and staffing. Using data from the 2018 registry survey, we report on the operational features of inpatient PPC programs across the United States.
RESULTS
Fifty-four inpatient PPC programs submitted data about their operations. Programs reported a median of 3.8 full-time equivalent staff per 10 000 hospital admissions (range 0.7-12.1) across the core interdisciplinary team, yet few (37%) met the minimum standards of practice for staffing. Programs provided more annual consults if they were longer-standing, had more interdisciplinary full-time equivalent staff, offered 24/7 availability for patients and families, or were at larger hospitals. The majority of programs reported concern for burnout (63%) and an inability to meet clinical demand with available staffing (60%).
CONCLUSIONS
There is considerable variability in PPC program operations and structure in hospitals. This study affirms the need for updated program standards and guidelines, as well as research that describes how different care delivery models impact outcomes for patients, families, staff, and health care systems. Future studies that further define the clinical demand, workload, and sustainability challenges of PPC programs are necessary to foster the provision of high-quality PPC and maintain a vital clinical workforce.
Topics: Burnout, Professional; Child; Hospital Administration; Hospital Bed Capacity; Humans; Medical Staff, Hospital; Palliative Care; Patient Care Team; Personnel Staffing and Scheduling; Quality of Health Care; Registries; United States
PubMed: 34183362
DOI: 10.1542/peds.2020-021634 -
Journal of Pain and Symptom Management Jun 2023The current gap in access to palliative care requires the expansion of palliative care services worldwide. There is little information about the structural components... (Review)
Review
CONTEXT
The current gap in access to palliative care requires the expansion of palliative care services worldwide. There is little information about the structural components required by palliative care services to provide adequate end-of-life care. No specific tools have been developed to assess the structural quality of these services.
OBJECTIVE
To develop and validate a tool to assess the structural quality of palliative care services.
METHODS
A scoping review of literature was performed to identify structural quality indicators of palliative care services. National experts participated in a two-round Delphi method to reach consensus regarding the importance and measurement feasibility of each proposed indicator. Consensus was reached for each indicator if 60% or more considered them both important and feasible. The selected indicators were tested among Chilean palliative care services to assess instrument psychometric characteristics.
RESULTS
Thirty-one indicators were identified. Thirty-five experts participated in a two-round Delphi survey. Twenty-one indicators reached consensus and were included in the structural quality of palliative care services tool (SQPCS-21). This instrument was applied to 201 out of 250 palliative care services in Chile. Achievement for each indicator varied between 8% and 96% (mean 52%). The total SQPCS-21 score varied between 3 and 21 points (mean 11 points).
CONCLUSION
The SQPCS-21 tool to assess structural quality of palliative care services, has good content and construct validity and its application provides information about institutions at the individual and aggregated level. This tool can provide guidance to monitor the structural quality of palliative care worldwide.
Topics: Humans; Palliative Care; Quality Indicators, Health Care; Delphi Technique; Hospice and Palliative Care Nursing; Terminal Care
PubMed: 36702392
DOI: 10.1016/j.jpainsymman.2023.01.006 -
BMJ Supportive & Palliative Care Dec 2019Palliative care services have, up to now, paid insufficient attention to social aspects of dying and bereavement and this has affected how patients and their families...
OBJECTIVES
Palliative care services have, up to now, paid insufficient attention to social aspects of dying and bereavement and this has affected how patients and their families experience end of life and bereavement within their communities. New public health approaches to palliative care offer a different way forward by seeking to develop communities that support death and bereavement. Such approaches are now a priority for the majority of hospices in the UK and work with schools has been identified as a key area of work. Practice that engages schools and children on issues concerning end-of-life care is, however, underdeveloped and underdocumented. This research explored the role of hospices in working with schools to promote education and support around end-of-life and bereavement experiences.
METHODS
Action research was used to explore the potential for hospices to work with schools and engage participants in change processes. The research was conducted in 1 hospice and 2 primary schools in Scotland. Participants included children, parents and school and hospice staff.
RESULTS
Seven innovations were identified that were found to be useful for the school curriculum and the relationship between hospices, school communities and wider society. A model for integrated practice between hospices and schools is suggested.
CONCLUSIONS
This research adds to knowledge about how hospices might engage in community engagement activities that encourage school staff to develop greater openness and support around end-of-life and bereavement care for their children. This will require a rethinking of normal hospice services to also participate in community capacity building.
Topics: Bereavement; Capacity Building; Child; Curriculum; Delivery of Health Care; Delivery of Health Care, Integrated; Female; Hospice Care; Hospices; Humans; Male; Palliative Care; School Health Services; Scotland
PubMed: 27515864
DOI: 10.1136/bmjspcare-2015-001092 -
The Nursing Clinics of North America Jun 2021Sleep-wake disturbances are common in patients with cancer. Despite the high prevalence of altered sleep patterns in oncology settings, there remains a gap in consistent... (Review)
Review
Sleep-wake disturbances are common in patients with cancer. Despite the high prevalence of altered sleep patterns in oncology settings, there remains a gap in consistent assessment of sleep, leading to an underrecognized and undertreated condition. Provider failure in addressing sleep-wake disturbances can result in chronic issues with insomnia and has a negative impact on quality of life and cancer survivorship. Often sleep-wake disturbances present in symptom "clusters" including, anxiety, depression, and fatigue, which adds to the complexity of managing sleep disorders in oncology. Aggressive management strategies for managing underlying symptom burden from disease or medications effects is a priority.
Topics: Fatigue; Humans; Neoplasms; Oncology Nursing; Palliative Care; Prevalence; Sleep Wake Disorders
PubMed: 34023114
DOI: 10.1016/j.cnur.2021.03.001 -
BMC Palliative Care May 2024The integral model of Palliative Care recognizes the community as essential element in improving quality of life of patients and families. It is necessary to find a... (Review)
Review
BACKGROUND
The integral model of Palliative Care recognizes the community as essential element in improving quality of life of patients and families. It is necessary to find a formula that allows the community to have a voice. The aim of this scoping review is to identify barriers and facilitators to engage community in PC.
METHODS
Systematic search was conducted in NICE, Cochrane Library, Health Evidence, CINAHL and PubMed database.
KEYWORDS
Palliative care, End of life care, community networks, community engagement, public engagement, community participation, social participation, barriers and facilitators.
RESULTS
Nine hundred seventy-one results were obtained. Search strategy and inclusion criteria yielded 13 studies that were read in detail to identify factors influencing community engagement in palliative care, categorized into: Public health and public engagement; Community attitudes towards palliative care, death and preferences at the end of life; Importance of volunteers in public engagement programs; Compassionate communities.
CONCLUSION
Societal awareness must be a facilitated process to catalyse public engagement efforts. National policy initiatives and regional system support provide legitimacy and focus is essential for funding. The first step is to get a sense of what is important to society, bearing in mind cultural differences and to channel those aspects through health care professionals; connecting the most assistential part with community resources. The process and long-term results need to be systematically evaluated.
Topics: Humans; Community Participation; Palliative Care; Terminal Care; Community Networks
PubMed: 38711035
DOI: 10.1186/s12904-024-01424-4 -
Critical Care Nurse Oct 2019The need for palliative care in the intensive care unit is increasing. Whether gaps and variations in palliative care education and use are associated with moral...
BACKGROUND
The need for palliative care in the intensive care unit is increasing. Whether gaps and variations in palliative care education and use are associated with moral distress among critical care nurses is unknown.
OBJECTIVES
To examine critical care nurses' perceived knowledge of palliative care, their recent experiences of moral distress, and possible relationships between these variables.
METHODS
In this quantitative, descriptive study, survey questionnaires were distributed to 517 critical care nurses across 7 intensive care units at an academic health center in Virginia. Validated instruments were used to measure participants' perceptions of palliative care in their practice setting and their recent experiences of moral distress.
RESULTS
A total of 167 completed questionnaires were analyzed. Fewer than 40% of respondents reported being highly competent in any palliative care domain. Most respondents had little palliative care education, with 38% reporting none in the past 2 years. Most respondents reported moral distress during the study period, and moral distress levels differed significantly on the basis of perceived use of palliative care ( = .03). Respondents who perceived less frequent use of palliative care tended to experience higher levels of moral distress.
CONCLUSIONS
Many critical care nurses do not feel prepared to provide palliative care. When palliative care access is perceived as inadequate, nurses may be more apt to experience moral distress. Health system leaders should prioritize palliative care training for critical care nurses and their colleagues and empower them to reduce barriers to palliative care.
Topics: Adult; Attitude of Health Personnel; Critical Care Nursing; Female; Humans; Job Satisfaction; Male; Middle Aged; Morals; Nursing Staff, Hospital; Palliative Care; Stress, Psychological; Surveys and Questionnaires; Virginia; Young Adult
PubMed: 31575593
DOI: 10.4037/ccn2019645 -
BMJ Supportive & Palliative Care Mar 2023Palliative care is increasingly confronted with cultural diversity. This can lead to various problems in practice. In this perspective article, the authors discuss in...
Palliative care is increasingly confronted with cultural diversity. This can lead to various problems in practice. In this perspective article, the authors discuss in more detail which issues play a role in culture-sensitive palliative care, why naive culturalism will not solve such problems and in which direction research into this aspect of care can be further elaborated.
Topics: Humans; Palliative Care; Cultural Diversity; Hospice and Palliative Care Nursing
PubMed: 32826261
DOI: 10.1136/bmjspcare-2020-002511 -
Journal of Pain and Symptom Management May 2023Interprofessional education (IPE) involving palliative and end-of-life content benefits learners by addressing interprofessional and palliative care (PC) competency... (Review)
Review
CONTEXT
Interprofessional education (IPE) involving palliative and end-of-life content benefits learners by addressing interprofessional and palliative care (PC) competency needs.
OBJECTIVES
A synthesis of educational approaches promoting interprofessional PC in academic and clinical settings would address research gaps and promote effective teaching.
METHODS
A systematic review of interprofessional PC educational studies was conducted to summarize current approaches in PC IPE and to appraise teaching and research methods. Characteristics of excellence in interprofessional PC education established by Donesky et al. served as a framework for evaluating studies in this systematic review.
RESULTS
A total of 39 articles met inclusion criteria for this review. Learners from medicine and nursing were the most included professions. University programs represented most studies, and evaluation methods demonstrated achievement of mostly self-reported outcomes like learner attitude and self-efficacy. While the effect of interprofessional collaboration on patient outcomes is well-documented, the effect of IPE on PC delivery is not. Although content spanned all interprofessional and PC domains, few studies addressed cultural aspects and fewer addressed well-being for the care provider.
CONCLUSION
In light of the current healthcare landscape, there is an imminent need to address culture and provider well-being more directly through interprofessional PC education. Education and research must also move beyond university programs into health systems to support the professional development of clinicians for systems integration, sustainability, and impact on patient outcomes. Future evaluation of interprofessional PC education would be strengthened by multisite studies, randomized controlled trials, and repeated measures looking at outcomes over time.
Topics: Humans; Palliative Care; Interprofessional Education; Hospice and Palliative Care Nursing; Education, Nursing
PubMed: 36736863
DOI: 10.1016/j.jpainsymman.2023.01.022 -
The Canadian Journal of Cardiology Jul 2020Heart failure (HF), a clinical syndrome with a variable trajectory has become more common. As people with HF experience functional decline during periods of... (Review)
Review
Heart failure (HF), a clinical syndrome with a variable trajectory has become more common. As people with HF experience functional decline during periods of deterioration in their HF status, or with aging, their needs for palliative care increase. In this review we consider the palliative aspects of evidence-based HF care, which benefit patients while also addressing the underlying etiology of the HF. We also identify symptoms common to patients with HF and management beyond evidence-based HF care. Prognostic models and tools to identify patients appropriately evaluated by HF specialty experts might help clinicians understand the patient's status. Rather than trying to identify a point at which palliative care should be included in care for a patient with HF, we suggest that identifying specific needs of the patient and family is a better way to target palliative care interventions. We review available publications that have explored integration of palliative care into HF care, and propose an outpatient clinic model to assess needs and symptoms and direct HF specialist or palliative care on the basis of this assessment.
Topics: Disease Management; Heart Failure; Humans; Palliative Care; Prognosis; Quality of Life
PubMed: 32413550
DOI: 10.1016/j.cjca.2020.05.004