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Annals of Palliative Medicine Jan 2018Healthcare services are often out of sync with cultural, spiritual and religious perspectives on health, death, and grieving. This dissonance affects attitudes and...
Healthcare services are often out of sync with cultural, spiritual and religious perspectives on health, death, and grieving. This dissonance affects attitudes and behaviours in seeking and utilizing end-of-life health services and can lead to poor clinical communication, misunderstanding, and anxiety as patients, families and health providers interact during a serious illness. To address a gap in cultural-specific information Canadian Virtual Hospice launched LivingMyCulture.ca-an evidence-informed collection of videos of immigrants, refugees, and Indigenous people sharing their stories about the intersection of culture, spirituality, and religion with their experiences of advanced illness, palliative care, and grief. The video repository includes over 650 video clips, available in 11 different languages. These narratives empower and educate patients and their families by raising their awareness about accessing, advocating, and receiving culturally safe and inclusive care as they navigate the Canadian healthcare system. LivingMyCulture.ca also promotes culturally sensitive care among health providers to enhance their knowledge and skills in providing culturally safe and inclusive care in order to improve care outcomes. This presentation will introduce LivingMyCulture.ca, provide strategies for incorporating the tool into practice to support patient and family care and share summative evaluation results. A Somali-Canadian journalist and community leader will share her unique Muslim and Somali perspective about the way illness, dying and grief is approached and the impact of LivingMyCulture.ca in the community. Overviews of other culture groups' video resources will also be shared, reflecting Canada's rich cultural tapestry. This workshop will provide an overview of LivingMyCulture.ca, share video clips from the 11 cultures in the series and include a discussion with a Somali-Canadian journalist and community leader about the way people in her culture approach illness, dying and grief and the overall impact of LivingMyCulture.ca.
Topics: Adult; Aged; Aged, 80 and over; Canada; Culturally Competent Care; Female; Humans; Male; Middle Aged; Palliative Care; Spirituality; Terminal Care
PubMed: 29402110
DOI: 10.21037/apm.2018.s016 -
American Heart Journal Nov 2014The progressive nature of heart failure (HF) coupled with high mortality and poor quality of life mandates greater attention to palliative care as a routine component of... (Randomized Controlled Trial)
Randomized Controlled Trial
BACKGROUND
The progressive nature of heart failure (HF) coupled with high mortality and poor quality of life mandates greater attention to palliative care as a routine component of advanced HF management. Limited evidence exists from randomized, controlled trials supporting the use of interdisciplinary palliative care in HF.
METHODS
PAL-HF is a prospective, controlled, unblinded, single-center study of an interdisciplinary palliative care intervention in 200 patients with advanced HF estimated to have a high likelihood of mortality or rehospitalization in the ensuing 6 months. The 6-month PAL-HF intervention focuses on physical and psychosocial symptom relief, attention to spiritual concerns, and advanced care planning. The primary end point is health-related quality of life measured by the Kansas City Cardiomyopathy Questionnaire and the Functional Assessment of Chronic Illness Therapy with Palliative Care Subscale score at 6 months. Secondary end points include changes in anxiety/depression, spiritual well-being, caregiver satisfaction, cost and resource utilization, and a composite of death, HF hospitalization, and quality of life.
CONCLUSIONS
PAL-HF is a randomized, controlled clinical trial that will help evaluate the efficacy and cost effectiveness of palliative care in advanced HF using a patient-centered outcome as well as clinical and economic end points.
Topics: Advance Care Planning; Cost-Benefit Analysis; Heart Failure; Humans; Palliative Care; Quality of Life; Severity of Illness Index; Spirituality; Treatment Outcome
PubMed: 25440791
DOI: 10.1016/j.ahj.2014.07.018 -
A Qualitative Study of the Limits and Possibilities of Integrating Palliative Care in Heart Failure.Inquiry : a Journal of Medical Care... 2023Heart failure is a progressive condition with a high burden of symptoms and clinical decompensations that causes psychological and social suffering, poor quality of...
Heart failure is a progressive condition with a high burden of symptoms and clinical decompensations that causes psychological and social suffering, poor quality of life, and limited life expectancy. Therefore, it requires palliative care to control symptoms and signs, but integrating it with clinical care is complicated. We aimed to discuss the limits and possibilities of integrating palliative care in heart failure. This was a qualitative descriptive study. Semi-structured qualitative interviews were carried out between July 2020 and July 2021. We applied the thematic content analysis and the SWOT matrix. Ethical principles were respected. Ten professionals from an Institute specializing in cardiovascular diseases in Rio de Janeiro, Brazil, participated in the study, including physicians, nurses, psychologist, and occupational therapist. We identified 4 categories related to intervening factors: the patient's profile, the emotional aspects of professionals facing these patients, the challenges to integrating and sustaining palliative care in practice, and the ways for assistance planning in this context. The existence of a specialized team, the palliative care commission, and the institutional palliative care protocol, aligned with the realistic perception of the assistance, organizational, political, and social problems, may promote the advancement of palliative care in heart failure.
Topics: Humans; Palliative Care; Quality of Life; Brazil; Physicians; Heart Failure; Qualitative Research
PubMed: 36998219
DOI: 10.1177/00469580231160897 -
Palliative & Supportive Care Aug 2019Healthcare professionals who work in palliative care units face stressful life events on a daily basis, most notably death. For this reason, these professionals must be...
OBJECTIVE
Healthcare professionals who work in palliative care units face stressful life events on a daily basis, most notably death. For this reason, these professionals must be equipped with the necessary protective resources to help them cope with professional and personal burnout. Despite the well-recognized importance of the construct "meaning of work," the role of this construct and its relationship with other variables is not well-understood. Our objective is to develop and evaluate a model that examines the mediating role of the meaning of work in a multidisciplinary group of palliative care professionals. Using this model, we sought to assess the relationships between meaning of work, perceived stress, personal protective factors (optimism, self-esteem, life satisfaction, personal growth, subjective vitality), and sociodemographic variables.
METHOD
Professionals (n = 189) from a wide range of disciplines (physicians, psychologists, nurses, social workers, nursing assistants, physical therapists, and chaplains) working in palliative care units at hospitals in Madrid and the Balearic Islands were recruited. Sociodemographic variables were collected and recorded. The following questionnaires were administered: Meaning of Work Questionnaire, Perceived Stress Questionnaire, Life Orientation Test-Revised, Satisfaction with Life Scale, Subjective Vitality Scale, Rosenberg Self-Esteem Scale, and the Personal Growth Scale.
RESULT
The explanatory value of the model was high, explaining 49.5% of the variance of life satisfaction, 43% of subjective vitality, and 36% of personal growth. The main findings of this study were as follow: (1) meaning of work and perceived stress were negatively correlated; (2) optimism and self-esteem mediated the effect of stress on the meaning attached to work among palliative care professionals; (3) the meaning of work mediated the effect of stress on subjective vitality, personal growth, and life satisfaction; and (4) vitality and personal growth directly influenced life satisfaction.
SIGNIFICANCE OF RESULTS
The proposed model showed a high explanatory value for the meaning professionals give to their work and also for perceived stress, personal protective factors, and sociodemographic variables. Our findings could have highly relevant practical implications for designing programs to promote the psychological well-being of healthcare professionals.
Topics: Adaptation, Psychological; Adolescent; Adult; Aged; Attitude of Health Personnel; Cross-Sectional Studies; Female; Health Personnel; Humans; Job Satisfaction; Male; Middle Aged; Palliative Care; Protective Factors; Psychometrics; Spain; Surveys and Questionnaires
PubMed: 30841936
DOI: 10.1017/S147895151800113X -
Current Opinion in Cardiology Mar 2018The current review discusses the integration of guideline and evidence-based palliative care into heart failure end-of-life (EOL) care. (Review)
Review
PURPOSE OF REVIEW
The current review discusses the integration of guideline and evidence-based palliative care into heart failure end-of-life (EOL) care.
RECENT FINDINGS
North American and European heart failure societies recommend the integration of palliative care into heart failure programs. Advance care planning, shared decision-making, routine measurement of symptoms and quality of life and specialist palliative care at heart failure EOL are identified as key components to an effective heart failure palliative care program. There is limited evidence to support the effectiveness of the individual elements. However, results from the palliative care in heart failure trial suggest an integrated heart failure palliative care program can significantly improve quality of life for heart failure patients at EOL.
SUMMARY
Integration of a palliative approach to heart failure EOL care helps to ensure patients receive the care that is congruent with their values, wishes and preferences. Specialist palliative care referrals are limited to those who are truly at heart failure EOL.
Topics: Decision Making; Disease Progression; Heart Failure; Humans; Palliative Care; Quality of Life; Terminal Care
PubMed: 29135524
DOI: 10.1097/HCO.0000000000000484 -
Ugeskrift For Laeger Oct 2017
Topics: Denmark; Health Priorities; Humans; Palliative Care
PubMed: 29053093
DOI: No ID Found -
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 -
PloS One 2016Prognostic accuracy in palliative care is valued by patients, carers, and healthcare professionals. Previous reviews suggest clinicians are inaccurate at survival... (Review)
Review
BACKGROUND
Prognostic accuracy in palliative care is valued by patients, carers, and healthcare professionals. Previous reviews suggest clinicians are inaccurate at survival estimates, but have only reported the accuracy of estimates on patients with a cancer diagnosis.
OBJECTIVES
To examine the accuracy of clinicians' estimates of survival and to determine if any clinical profession is better at doing so than another.
DATA SOURCES
MEDLINE, Embase, CINAHL, and the Cochrane Database of Systematic Reviews and Trials. All databases were searched from the start of the database up to June 2015. Reference lists of eligible articles were also checked.
INCLUSION CRITERIA
patients over 18, palliative population and setting, quantifiable estimate based on real patients, full publication written in English.
EXCLUSION CRITERIA
if the estimate was following an intervention, such as surgery, or the patient was artificially ventilated or in intensive care.
STUDY APPRAISAL AND SYNTHESIS METHODS
A quality assessment was completed with the QUIPS tool. Data on the reported accuracy of estimates and information about the clinicians were extracted. Studies were grouped by type of estimate: categorical (the clinician had a predetermined list of outcomes to choose from), continuous (open-ended estimate), or probabilistic (likelihood of surviving a particular time frame).
RESULTS
4,642 records were identified; 42 studies fully met the review criteria. Wide variation was shown with categorical estimates (range 23% to 78%) and continuous estimates ranged between an underestimate of 86 days to an overestimate of 93 days. The four papers which used probabilistic estimates tended to show greater accuracy (c-statistics of 0.74-0.78). Information available about the clinicians providing the estimates was limited. Overall, there was no clear "expert" subgroup of clinicians identified.
LIMITATIONS
High heterogeneity limited the analyses possible and prevented an overall accuracy being reported. Data were extracted using a standardised tool, by one reviewer, which could have introduced bias. Devising search terms for prognostic studies is challenging. Every attempt was made to devise search terms that were sufficiently sensitive to detect all prognostic studies; however, it remains possible that some studies were not identified.
CONCLUSION
Studies of prognostic accuracy in palliative care are heterogeneous, but the evidence suggests that clinicians' predictions are frequently inaccurate. No sub-group of clinicians was consistently shown to be more accurate than any other.
IMPLICATIONS OF KEY FINDINGS
Further research is needed to understand how clinical predictions are formulated and how their accuracy can be improved.
Topics: Algorithms; Humans; Palliative Care; Patient Comfort; Physicians; Probability; Prognosis; Survival; Treatment Outcome
PubMed: 27560380
DOI: 10.1371/journal.pone.0161407 -
Journal of Pain and Symptom Management May 2018To meet the growing need for palliative care in low-resource countries, palliative care programs should be evidence based and contextually appropriate. This study was...
CONTEXT
To meet the growing need for palliative care in low-resource countries, palliative care programs should be evidence based and contextually appropriate. This study was conducted to synthesize the current evidence to guide future programmatic and research efforts.
OBJECTIVES
This systematic review evaluated palliative care outcome measures, outcomes, and interventions in low-resource countries.
METHODS
After title searches, abstracts and full-text articles were screened for inclusion. Data were extracted to report on intervention models, outcome measures used, and intervention outcomes.
RESULTS
Eighteen papers were reviewed, reporting on interventions conducted across nine low-resource countries. These interventions evaluated home-based palliative care models; a community-managed model; palliative care integrated with hospitals, hospices, or HIV clinics; and models focused on patients' self-management. Three studies were randomized controlled trials. Other studies used nonrandomized trials, cohort studies, mixed methods, pre-post test evaluation, cost-accounting evaluation, and cross-sectional surveys. Thirteen studies measured physical outcomes, 10 using multidimensional instruments. Nine studies measured psychological outcomes, eight using multidimensional instruments. Nine studies measured social outcomes, seven using multidimensional instruments. Nine studies measured outcomes across multiple domains. Across outcomes evaluated, results were reported in the direction of benefit associated with palliative care interventions.
CONCLUSION
Many palliative care intervention models exist to serve patients in low-resource countries. Yet, limited high-quality evidence from low-resource countries is available to document intervention outcomes. Rigorous experimental studies and greater measurement of multidimensional aspects of palliative care are needed to advance the science of palliative care in low-resource settings.
Topics: Developing Countries; Humans; Outcome Assessment, Health Care; Palliative Care; Poverty
PubMed: 29305322
DOI: 10.1016/j.jpainsymman.2017.12.487 -
Neurology Jul 2018Neuropalliative care is an emerging subspecialty in neurology and palliative care. On April 26, 2017, we convened a Neuropalliative Care Summit with national and... (Review)
Review
Neuropalliative care is an emerging subspecialty in neurology and palliative care. On April 26, 2017, we convened a Neuropalliative Care Summit with national and international experts in the field to develop a clinical, educational, and research agenda to move the field forward. Clinical priorities included the need to develop and implement effective models to integrate palliative care into neurology and to develop and implement informative quality measures to evaluate and compare palliative approaches. Educational priorities included the need to improve the messaging of palliative care and to create standards for palliative care education for neurologists and neurology education for palliative specialists. Research priorities included the need to improve the evidence base across the entire research spectrum from early-stage interventional research to implementation science. Highest priority areas include focusing on outcomes important to patients and families, developing serious conversation triggers, and developing novel approaches to patient and family engagement, including improvements to decision quality. As we continue to make remarkable advances in the prevention, diagnosis, and treatment of neurologic illness, neurologists will face an increasing need to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body. This article outlines opportunities to improve the quality of care for all patients with neurologic illness and their families through a broad range of clinical, educational, and investigative efforts that include complex symptom management, communication skills, and models of care.
Topics: Congresses as Topic; Humans; Nervous System Diseases; Neurologists; Palliative Care
PubMed: 29950434
DOI: 10.1212/WNL.0000000000005916