scholarly journals Conversations About Children When an Important Adult Is at End of Life: An Audit

2021 ◽  
pp. 104990912110462
Author(s):  
Jeffrey R. Hanna ◽  
Elizabeth Rapa ◽  
Mary Miller ◽  
Madeleine Turner ◽  
Louise J. Dalton
Keyword(s):  
Palliative Care ◽  
Clinical Practice ◽  
End Of Life ◽  
Family Support ◽  
Social Care ◽  
Routine Care ◽  
Adult Patients ◽  
Health And Social Care ◽  
Training Resources ◽  
Family Centered

Purpose: Health and social care professionals report it challenging to have conversations with families when an important adult in the life of a child is at end of life, often feeling this aspect of care is the responsibility of other colleagues. This study aimed to understand professionals’ perceived role in family-centered conversations as part of routine care at end of life, and how to promote this element of care in clinical practice. Methods: An audit was completed with 116 professionals who work in palliative care including doctors and nurses that attended a 2-day virtual congress. Results: Professionals (73.2%) felt confident about starting a conversation with adult patients at end of life about important children. However, enquiring about relationships with children was largely dependent on the age of the patient. 64.7% of respondents reported signposting families to websites and services that provide family support. Most professionals (76.7%) wanted training to equip them with the skills and confidence to having family-centered conversations at end of life, with videos demonstrating how to provide these elements of care the most preferred option. Conclusions: Short training resources should be developed to equip professionals with the necessary skills toward having conversations about children with patients and relatives in clinical appointments. There is a need for professionals to ask every patient about important relationships with children.

Effectiveness of Educational Programs on Palliative and End-of-life Care in Promoting Perceived Competence Among Health and Social Care Professionals

2021 ◽  
pp. 104990912110385
Author(s):  
Kelly Tsz Ching Wong ◽  
Amy Yin Man Chow ◽  
Iris Kwan Ning Chan
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Social Workers ◽  
End Of Life Care ◽  
Social Care ◽  
Self Care ◽  
Perceived Competence ◽  
Educational Programs ◽  
Life Care ◽  
Health And Social Care

Background: There is a growing need for palliative care for patients near the end of life and their caregivers. Palliative and end-of-life care (EoLC) education are recommended for all health care (e.g., physicians, nurses, and allied health practitioners) and social care professionals (e.g., social workers) to ensure the quality of services. However, less attention has been afforded to generic, in contrast to specialized, EoLC education. This study evaluated the effectiveness of a series of short-term generic EoLC educational programs for health and social care professionals. Method: A pre-post survey design was adopted, focusing on different EoLC core competences. Results: Significant improvement was observed in all perceived competences after the educational programs, regardless of participants’ occupation or EoLC experience. Perceived competence in self-care was rated significantly higher than all other competences prior to the programs. Healthcare professionals rated significantly higher on competence in symptom management than social workers. Scores on communication skill and self-care competences were significantly higher following longer (i.e., 16-24 hours) than shorter (i.e., 4-8 hours) programs. Conclusion: Generalist palliative/EoLC educational programs may enable health and social care professionals to refresh and extend their knowledge and skills and enhance their perceived competence in providing EoLC. Further research on generalist palliative/EoLC education is needed to examine the impact of continuing training on professionals’ actual practice in EoLC and palliative care.

scholarly journals Information sharing challenges in end-of-life care: a qualitative study of patient, family and professional perspectives on the potential of an Electronic Palliative Care Co-ordination System

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e037483
Author(s):  
Holly Standing ◽  
Rebecca Patterson ◽  
Mark Lee ◽  
Sonia Michelle Dalkin ◽  
Monique Lhussier ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Information Sharing ◽  
End Of Life ◽  
End Of Life Care ◽  
Social Care ◽  
Hospital Admissions ◽  
Sufficient Information ◽  
Life Care ◽  
Health And Social Care

ObjectivesTo explore current challenges in interdisciplinary management of end-of-life care in the community and the potential of an Electronic Palliative Care Co-ordination System (EPaCCS) to facilitate the delivery of care that meets patient preferences.DesignQualitative study using interviews and focus groups.SettingHealth and Social Care Services in the North of England.Participants71 participants, 62 health and social care professionals, 9 patients and family members.ResultsFour key themes were identified: information sharing challenges; information sharing systems; perceived benefits of an EPaCCS and barriers to use and requirements for an EPaCCS. Challenges in sharing information were a source of frustration for health and social care professionals as well as patients, and were suggested to result in inappropriate hospital admissions. Current systems were perceived by participants to not work well—paper advance care planning (ACP) documentation was often unavailable or inaccessible, meaning it could not be used to inform decision-making at the point of care. Participants acknowledged the benefits of an EPaCCS to facilitate information sharing; however, they also raised concerns about confidentiality, and availability of the increased time and resources required to access and maintain such a system.ConclusionsEPaCCS offer a potential solution to information sharing challenges in end-of-life care. However, our findings suggest that there are issues in the initiation and documentation of end-of-life discussions that must be addressed through investment in training in order to ensure that there is sufficient information regarding ACP to populate the system. There is a need for further qualitative research evaluating use of an EPaCCS, which explores benefits and challenges, uptake and reasons for disparities in use to better understand the potential utility and implications of such systems.

scholarly journals End-of-life care for homeless people: A qualitative analysis exploring the challenges to access and provision of palliative care

2017 ◽  
Vol 32 (1) ◽  
pp. 36-45 ◽  
Author(s):  
Caroline Shulman ◽  
Briony F Hudson ◽  
Joseph Low ◽  
Nigel Hewett ◽  
Julian Daley ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Service Use ◽  
Social Care ◽  
Care Service ◽  
Homeless People ◽  
Palliative Care Service ◽  
Care Providers ◽  
Health And Social Care ◽  
Formerly Homeless

Background: Being homeless or vulnerably housed is associated with death at a young age, frequently related to medical problems complicated by drug or alcohol dependence. Homeless people experience high symptom burden at the end of life, yet palliative care service use is limited. Aim: To explore the views and experiences of current and formerly homeless people, frontline homelessness staff (from hostels, day centres and outreach teams) and health- and social-care providers, regarding challenges to supporting homeless people with advanced ill health, and to make suggestions for improving care. Design: Thematic analysis of data collected using focus groups and interviews. Participants: Single homeless people ( n = 28), formerly homeless people ( n = 10), health- and social-care providers ( n = 48), hostel staff ( n = 30) and outreach staff ( n = 10). Results: This research documents growing concern that many homeless people are dying in unsupported, unacceptable situations. It highlights the complexities of identifying who is palliative and lack of appropriate places of care for people who are homeless with high support needs, particularly in combination with substance misuse issues. Conclusion: Due to the lack of alternatives, homeless people with advanced ill health often remain in hostels. Conflict between the recovery-focused nature of many services and the realities of health and illness for often young homeless people result in a lack of person-centred care. Greater multidisciplinary working, extended in-reach into hostels from health and social services and training for all professional groups along with more access to appropriate supported accommodation are required to improve care for homeless people with advanced ill health.

scholarly journals Impact of Home Healthcare on End-of-life Outcomes for People With Dementia: a Systematic Review

2021 ◽  
Author(s):  
Ping-Jen Chen ◽  
Lisanne Smits ◽  
Rose Miranda ◽  
Jung-Yu Liao ◽  
Irene Petersen ◽  
...  
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
Healthcare Utilization ◽  
Social Care ◽  
Home Healthcare ◽  
Life Outcomes ◽  
Health And Social Care ◽  
Acute Healthcare ◽  
The Impact

Abstract Background: Home healthcare (HHC) may reduce acute hospital utilization, but its effect on homebound people living with dementia (PLWD) at end-of-life remains unclear. We aim to describe the impact of HHC on acute healthcare utilization and end-of-life outcomes in PLWD.Methods: Design: A systematic review of quantitative and qualitative studies regarding the association between HHC (exposure) and targeted outcomes. Interventions: HHC provided by health care professionals, including physicians or nurses. Participants: At least 80% of study participants had dementia and lived at home. Measurements: Primary outcome was acute healthcare utilization in the last year of life. Secondary outcomes included palliative care use, advance care planning (ACP), continuity of care in the last year of life, and place of death. We identified contextual information about policy changes in HHC for these outcomes.Results: We included five studies from USA, Japan, and Italy, none of which received a high-quality rating. At micro-level, HHC may be associated with a lower risk of acute healthcare utilization in the early period (e.g., last 90 days before death) and a higher risk in the late period (e.g. last 15 days) of the disease trajectory toward end-of-life in PLWD. ACP with written decisions may be an important mediator of this. HHC increases referrals to palliative care. At meso-level, HHC providers’ difficulty in making treatment decisions for PLWD at the end-of-life may require further training and external support. Coordination between HHC and social care is mentioned but not well examined in the existing literature.Conclusions: The review highlights the dearth of dementia-specific research regarding the impact of HHC on end-of-life outcomes. In PLWD, the core components of HHC for achieving better quality end-of-life, the integration between health and social care, and coordination between primary HHC and palliative care should be further investigated in future studies.

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 Priorities and opportunities for palliative and end of life care in United Kingdom health policies: a national documentary analysis

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Katherine E. Sleeman ◽  
Anna Timms ◽  
Juliet Gillam ◽  
Janet E. Anderson ◽  
Richard Harding ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
National Health ◽  
End Of Life Care ◽  
Social Care ◽  
Health Policies ◽  
Life Care ◽  
Policy Documents ◽  
Health And Social Care ◽  
National Health Policies

Abstract Background Access to high-quality palliative care is inadequate for most people living and dying with serious illness. Policies aimed at optimising delivery of palliative and end of life care are an important mechanism to improve quality of care for the dying. The extent to which palliative care is included in national health policies is unknown. We aimed to identify priorities and opportunities for palliative and end of life care in national health policies in the UK. Methods Documentary analysis consisting of 1) summative content analysis to describe the extent to which palliative and end of life care is referred to and/or prioritised in national health and social care policies, and 2) thematic analysis to explore health policy priorities that are opportunities to widen access to palliative and end of life care for people with serious illness. Relevant national policy documents were identified through web searches of key government and other organisations, and through expert consultation. Documents included were UK-wide or devolved (i.e. England, Scotland, Northern Ireland, Wales), health and social care government strategies published from 2010 onwards. Results Fifteen policy documents were included in the final analysis. Twelve referred to palliative or end of life care, but details about what should improve, or mechanisms to achieve this, were sparse. Policy priorities that are opportunities to widen palliative and end of life care access comprised three inter-related themes: (1) integrated care – conceptualised as reorganisation of services as a way to enable improvement; (2) personalised care – conceptualised as allowing people to shape and manage their own care; and (3) support for unpaid carers – conceptualised as enabling unpaid carers to live a more independent lifestyle and balance caring with their own needs. Conclusions Although information on palliative and end of life care in UK health and social care policies was sparse, improving palliative care may provide an evidence-based approach to achieve the stated policy priorities of integrated care, personalised care, and support for unpaid carers. Aligning existing evidence of the benefits of palliative care with the three priorities identified may be an effective mechanism to both strengthen policy and improve care for people who are dying.

First steps: Health and social care professionals beginning to address the palliative and end of life care needs of people with diverse gender identities and sexual orientations in Lebanon

Sexualities ◽  
2020 ◽  
pp. 136346072093238
Author(s):  
Claude Chidiac
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Social Stigma ◽  
Life Care ◽  
Care Needs ◽  
Mena Region ◽  
Healthcare Needs ◽  
Health And Social Care ◽  
The Impact

The available evidence demonstrates that lesbian, gay, bisexual, and transgender (LGBT) people face challenges when accessing palliative care services, and receive suboptimal care at the end of life. This is mainly attributed to assumed heterosexuality, lack of knowledge and understanding of LGBT issues and specific healthcare needs, discrimination, homophobia, and transphobia. In Lebanon, legal and institutional support for LGBT individuals is minimal, and palliative care provision remains scarce and fragmented. This compounds the impact of social stigma and marginalisation, and results in unrecognised palliative and end of life care needs for the LGBT individual. This short commentary discusses the development of an LGBT palliative care workshop in Lebanon, which was the first initiative of its kind in the Middle East and North Africa (MENA) region. It also explores how this initiative has led to further developments, and how these efforts can be replicated in other countries in the MENA region.

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