scholarly journals Pan-Canadian Framework for Palliative and End-of-Life Care Research

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 175s-175s
Author(s):  
J. Bray ◽  
S. Robbins ◽  
D. Dudgeon ◽  
K. Badovinac ◽  
R. Urquhart ◽  
...  
Keyword(s):  
Cancer Research ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Research Funding ◽  
Data Access ◽  
Research Network ◽  
Successful Implementation ◽  
Life Care ◽  
Care Research

Background and context: Ongoing advances have been made in the conceptualization and operationalization of palliative and end-of-life care (PEOLC) (e.g., palliative approaches to care, early identification of people who would benefit from palliative care). In addition, Canada has been a leader in PEOLC research and continues to have an internationally recognized research community. However, many Canadians continue to experience unnecessary pain and suffering at the end of life and receive care inconsistent with their goals and preferences. Within this context, the Canadian Cancer Research Alliance (CCRA) sought to develop a national research framework to guide Canada's cancer research funders in response to their strategic priority to improve the patient experience and quality of life for all cancer patients. Aim: To develop and implement a national framework and recommendations to enable funders to capitalize on existing research strengths and build capacity to address unmet needs to advance the field and broaden the scope, beyond its historical affiliation with advanced cancer, to include PEOLC for all those living and dying with life-limiting conditions. Strategy/Tactics: The framework's development was informed by multiple approaches, including: a strategic literature review; an analysis of PEOLC research funding in Canada from 2005-13; and an online survey and key informant interviews from the broader stakeholder community. Program/Policy process: A working group of CCRA member representatives and palliative care experts met regularly to provide guidance and feedback to a consultant who synthesized the data and formulated recommendations. In total, > 200 stakeholders (e.g., patients, caregivers, researchers, volunteers, practitioners, decision-makers, and policy-makers) provided input through the survey and interviews. Outcomes: The Pan-Canadian Framework for Palliative and End-of-Life Research was released March 2017. It emphasizes priorities for research funding across three broad themes: 1) Transforming models of care; 2) Patient and family centredness; and 3) Ensuring equity. The identified research priorities are underpinned by four building blocks: capacity building; knowledge, synthesis, exchange, and implementation; data access and standardization; and research network development. What was learned: Successful implementation of the framework's recommendations requires strong leadership from champions within the community. The formation of the Pan-Canadian Palliative Care Research Collaborative led by palliative care clinician-researchers, in response to the identified need for a research network, is an example of an early success resulting from release of the framework. Continued efforts are needed to ensure ongoing uptake of the framework's recommendations. CCRA members have commenced planning to identify next steps for joint action.

scholarly journals Palliative and end-of-life care in care homes: protocol for codesigning and implementing an appropriate scalable model of Needs Rounds in the UK

BMJ Open ◽  
2021 ◽  
Vol 11 (2) ◽  
pp. e049486
Author(s):  
Aisha Macgregor ◽  
Alasdair Rutherford ◽  
Brendan McCormack ◽  
Jo Hockley ◽  
Margaret Ogden ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Home ◽  
Care Homes ◽  
Successful Implementation ◽  
Life Care ◽  
Care Home Staff ◽  
Palliative Care Teams ◽  
The Uk

IntroductionPalliative and end-of-life care in care homes is often inadequate, despite high morbidity and mortality. Residents can experience uncontrolled symptoms, poor quality deaths and avoidable hospitalisations. Care home staff can feel unsupported to look after residents at the end of life. Approaches for improving end-of-life care are often education-focused, do not triage residents and rarely integrate clinical care. This study will adapt an evidence-based approach from Australia for the UK context called ‘Palliative Care Needs Rounds’ (Needs Rounds). Needs Rounds combine triaging, anticipatory person-centred planning, case-based education and case-conferencing; the Australian studies found that Needs Rounds reduce length of stay in hospital, and improve dying in preferred place of care, and symptoms at the end of life.Methods and analysisThis implementation science study will codesign and implement a scalable UK model of Needs Rounds. The Integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) framework will be used to identify contextual barriers and use facilitation to enable successful implementation. Six palliative care teams, working with 4–6 care homes each, will engage in two phases. In phase 1 (February 2021), stakeholder interviews (n=40) will be used to develop a programme theory to meet the primary outcome of identifying what works, for whom in what circumstances for UK Needs Rounds. Subsequently a workshop to codesign UK Needs Rounds will be run. Phase 2 (July 2021) will implement the UK model for a year. Prospective data collection will focus on secondary outcomes regarding hospitalisations, residents’ quality of death and care home staff capability of adopting a palliative approach.Ethics and disseminationFrenchay Research Ethics Committee (287447) approved the study. Findings will be disseminated to policy-makers, care home/palliative care practitioners, residents/relatives and academic audiences. An implementation package will be developed for practitioners to provide the tools and resources required to adopt UK Needs Rounds.Registration detailsRegistration details: ISRCTN15863801.

scholarly journals Undergraduate palliative care education in the United Arab Emirates: a nationwide assessment of medical school deans

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Thana Harhara ◽  
Halah Ibrahim
Keyword(s):  
Palliative Care ◽  
Medical Students ◽  
Medical School ◽  
End Of Life ◽  
United Arab Emirates ◽  
Health Professionals ◽  
End Of Life Care ◽  
Successful Implementation ◽  
Life Care ◽  
High Quality

Abstract Background The provision of comprehensive, high quality palliative care (PC) is a global public health concern. In the United Arab Emirates (UAE), palliative medicine services are limited, and most patients in need of PC are treated in the acute hospital setting, where health professionals of all specialties provide treatment. Improving end-of-life care requires teaching medical students, residents, and other healthcare professionals about PC. The purpose of this study was to assess the current status of PC education in medical schools in the UAE, and to identify barriers to successful implementation of a PC and end-of-life curriculum. Methods The authors conducted semi-structured interviews with deans from all medical schools in the UAE. Data were analyzed using qualitative content analysis. Results All medical school deans in our study recognized the importance of inculcating palliative and end-of-life care into the undergraduate curriculum, but there was substantial variability in implementation, with opportunities for improvement. Barriers to the successful implementation of an undergraduate PC curriculum include (1) lack of student awareness and interest in PC, (2) inconsistent clinical exposure to PC, (3) lack of specialized PC faculty, (4) limited clinical facilities for PC training, (5) lack of a multidisciplinary approach to PC education, and (6) cultural barriers to PC education. Conclusions Understanding challenges to teaching PC in the undergraduate medical curriculum can help inform educational interventions to improve PC knowledge and skills for UAE medical students. Curricular and policy reform are necessary to educate a future generation of health professionals, who can provide high quality palliative care services to UAE patients and their families.

scholarly journals Does the Distinctiveness of Palliative Care Research Require Distinct Ethical Guidelines?

JAHR ◽  
2017 ◽  
Vol 8 (1) ◽  
pp. 31-57
Author(s):  
Daniel J. Hurst
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Care ◽  
Improve Quality ◽  
Life Care ◽  
Ethical Guidelines ◽  
Care Research ◽  
Rigorous Research

Palliative and end of life care is changing, becoming more widespread and improving for patients. Yet, the current literature in the field suggests that the evidence for palliative and end of life care is somewhat limited. Research on treatment decisions, family care, and advance directions are just a few of the areas that need rigorous research efforts. Palliative care research is essential in order to continue providing effective treatments to those suffering in the last stages of life. Indeed, the goal of good palliative care research is to relieve suffering and to improve quality of life. Similar to any other field, palliative care programs must develop on a research base, and patient care will suffer if it is not backed by sound research. However, weighted against this need are some who maintain that the ethical and practical challenges of palliative care research are unique and insurmountable. This analysis considers if distinct ethical guidelines are needed for palliative care research.

scholarly journals Using administrative health data for palliative and end of life care research in Ireland: potential and challenges

2021 ◽  
Vol 4 ◽  
pp. 17
Author(s):  
Maria Kelly ◽  
Katie M O'Brien ◽  
Ailish Hannigan
Keyword(s):  
Palliative Care ◽  
Health System ◽  
End Of Life ◽  
Data Protection ◽  
End Of Life Care ◽  
Social Care ◽  
Data Access ◽  
Life Care ◽  
Health And Social Care ◽  
Data Collections

Background: This study aims to examine the potential of currently available administrative health and social care data for palliative and end-of-life care (PEoLC) research in Ireland. Objectives include to i) identify data sources for PEoLC research ii) describe the challenges and opportunities of using these and iii) evaluate the impact of recent health system reforms and changes to data protection laws. Methods: The 2017 Health Information and Quality Authority catalogue of health and social care datasets was cross-referenced with a recognised list of diseases with associated palliative care needs. Criteria to assess the datasets included population coverage, data collected, data dictionary and data model availability, and mechanisms for data access. Results: Nine datasets with potential for PEoLC research were identified, including death certificate data, hospital episode data, pharmacy claims data,  one national survey, four disease registries (cancer, cystic fibrosis, motor neurone and interstitial lung disease) and a national renal transplant registry.  The ad hoc development of the health system in Ireland has resulted in i) a fragmented information infrastructure resulting in gaps in data collections particularly in the primary and community care sector where much palliative care is delivered, ii) ill-defined data governance arrangements across service providers, many of whom are not part of the publically funded health service and iii) systemic and temporal issues that affect data quality. Initiatives to improve data collections include introduction of i) patient unique identifiers, ii) health entity identifiers and iii) integration of the Eircode postcodes. Recently enacted general data protection and health research regulations will clarify legal and ethical requirements for data use. Conclusions: Ongoing reform initiatives and recent changes to data privacy laws combined with detailed knowledge of the datasets, appropriate permissions, and good study design will facilitate future use of administrative health and social care data for PEoLC research in Ireland.

scholarly journals Using linked administrative health data for palliative and end of life care research in Ireland: potential and challenges

2021 ◽  
Vol 4 ◽  
pp. 17
Author(s):  
Maria Kelly ◽  
Katie O'Brien ◽  
Ailish Hannigan
Keyword(s):  
Palliative Care ◽  
Health System ◽  
End Of Life ◽  
Data Protection ◽  
End Of Life Care ◽  
Data Access ◽  
Health Data ◽  
Life Care ◽  
Administrative Health Data ◽  
Data Collections

Background: This study aims to examine the potential of currently available administrative health data for palliative and end-of-life care (PEoLC) research in Ireland. Objectives include to i) identify administrative health data sources for PEoLC research ii) describe the challenges and opportunities of using these and iii) estimate  the impact of recent health system reforms and changes to data protection laws.  Methods: The 2017 Health Information and Quality Authority catalogue of health and social care datasets was cross-referenced with a recognised list of diseases with associated palliative care needs. Criteria to assess the datasets included population coverage, data collected, data dictionary and data model availability and mechanisms for data access. Results: Eight datasets with potential for PEoLC research were identified, including four disease registries, (cancer, cystic fibrosis, motor neurone and interstitial lung disease), death certificate data, hospital episode data, community prescription data and one national survey. The ad hoc development of the health system in Ireland has resulted in i) a fragmented information infrastructure resulting in gaps in data collections particularly in the primary and community care sector where much palliative care is delivered, ii) ill-defined data governance arrangements across service providers, many of whom are not part of the publically funded health service and iii) systemic and temporal issues that affect data quality. Initiatives to improve data collections include introduction of i) patient unique identifiers, ii) health entity identifiers and iii) integration of the eircode postcodes. Recently enacted general data protection and health research regulations will clarify legal and ethical requirements for data  use. Conclusions: With appropriate permissions, detailed knowledge of the datasets and good study design currently available administrative health data can be used for PEoLC research. Ongoing reform initiatives and recent changes to data privacy laws will facilitate future use of administrative health data for PEoLC research.

scholarly journals Trends in Pediatric Palliative Care Research (TPPCR) 2021; Issue #9: Commentary on Rapoport & Gupta

2021 ◽  
Author(s):  
Katherine Ketchum ◽  
- TPPCR
Keyword(s):  
Palliative Care ◽  
Children And Adolescents ◽  
End Of Life ◽  
End Of Life Care ◽  
Pediatric Palliative Care ◽  
Life Care ◽  
Care Research

This TPPCR commentary discusses the 2021 paper by Rapoport & Gupta, “Children and adolescents with hematologic cancers deserve better end-of-life care” published in Cancer.

scholarly journals Honoring Preferences—The Consistency Between End-of-Life Care and a Veteran’s Goal for Comfort Care

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 752-752
Author(s):  
Joan Carpenter ◽  
Winifred Scott ◽  
Mary Ersek ◽  
Cari Levy ◽  
Jennifer Cohen ◽  
...  
Keyword(s):  
Palliative Care ◽  
Logistic Regression ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Multivariate Logistic Regression ◽  
Comfort Care ◽  
Lower Odds ◽  
Medicare Data ◽  
Life Sustaining Treatment

Abstract This study examined the alignment between Veterans’ end-of-life care and a Life-Sustaining Treatment (LST) goal “to be comfortable.” It includes Veterans with VA inpatient or community living center stays overlapping July 2018--January 2019, with a LST template documented by January 31, 2019, and who died by April 30, 2019 (N = 18,163). Using VA and Medicare data, we found 80% of decedents with a comfort care goal received hospice and 57% a palliative care consult (compared to 57% and 46%, respectively, of decedents without a comfort care goal). Using multivariate logistic regression, a comfort care goal was associated with significantly lower odds of EOL hospital or ICU use. In the last 30 days of life, Veterans with a comfort care goal had 43% lower odds (AOR 0.57; 95% CI: 0.51, 0.64) of hospitalization and 46% lower odds of ICU use (AOR 0.54; 95% CI: 0.48, 0.61).

Help Me Understand: Providing Palliative Care to Individuals With Serious Mental Illness

2021 ◽  
pp. 104990912110107
Author(s):  
Kate L. M. Hinrichs ◽  
Cindy B. Woolverton ◽  
Jordana L. Meyerson
Keyword(s):  
Mental Illness ◽  
Palliative Care ◽  
End Of Life ◽  
Serious Mental Illness ◽  
End Of Life Care ◽  
Psychosocial Support ◽  
Life Care ◽  
Case Examples ◽  
Increased Risk ◽  
Palliative Care Teams

Individuals with serious mental illness (SMI) have shortened life expectancy with increased risk of developing comorbid medical illnesses. They might have difficulty accessing care and can be lost to follow-up due to complex socioeconomic factors, placing them at greater risk of dying from chronic or undiagnosed conditions. This, in combination with stigma associated with SMI, can result in lower quality end-of-life care. Interdisciplinary palliative care teams are in a unique position to lend assistance to those with SMI given their expertise in serious illness communication, values-based care, and psychosocial support. However, palliative care teams might be unfamiliar with the hallmark features of the various SMI diagnoses. Consequently, recognizing and managing exacerbations of SMI while delivering concurrent palliative or end-of-life care can feel challenging. The goal of this narrative review is to describe the benefits of providing palliative care to individuals with SMI with concrete suggestions for communication and use of recovery-oriented language in the treatment of individuals with SMI. The salient features of 3 SMI diagnoses—Bipolar Disorders, Major Depressive Disorder, and Schizophrenia—are outlined through case examples. Recommendations for working with individuals who have SMI and other life-limiting illness are provided, including strategies to effectively manage SMI exacerbations.

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