bluuebunny/crossref_metadata_2025_split huggingface dataset:
The cost-benefits of end-of-life training in care homes with dementia patients
Authors: Gandy R , Roe B , McClelland B , Ashton S 
Published: May 2011

An education and training initiative took place in 2006 in Greater Manchester for staff in five local care homes.AimsThe aim was to improve the quality of end-of-life (EoL) care for older people with dementia, through the use of established EoL care tools, including advance care planning. As part of a full evaluation, an economic appraisal examined the activity, outcomes and finances.MethodsData was collected on patients from the homes that died in the year before and the year after the initiative. The activity and costs of training and direct support to the homes were collected, with cost-benefit analyses subsequently undertaken.ResultsThe full evaluation showed many resultant quality benefits: improved communication between nursing, care and medical staff; better symptom management; and, support for family members and carers.The proportion of patients that died in their preferred place of death increased from 48% to 63% following the initiative. Advance care plans were in place for 83% of those dying in the care homes, but none of those dying in hospital. The LCP was used for 67% of those dying in the care homes.A cost-beneficial approach is affordable, but PCTs cannot expect cash savings, to fund education and training programmes, unless there are associated reductions in admissions to hospital, which is a primary aim of the Gold Standards Framework.2ConclusionsThe analyses evidenced that training care home staff in EoL care tools is affordable and cost-beneficial, and quantified key variations relating to whether patients had advance care plans.
A model for ethical CPR decision-making
Authors: Hayes B 
Published: May 2011

Half a century after the introduction of CPR (cardiopulmonary resuscitation), advance decisions to withhold CPR remain problematic. Previous research has identified inconsistent decision-making by doctors who largely receive no formal teaching in how to approach this decision – a decision about a treatment that has poor outcomes for many patient groups.This presentation is based on research undertaken as part of a PhD study that investigated how decisions are currently made about CPR. In this qualitative research, a total of 33 senior doctors, junior doctors and nurses were interviewed about the CPR decision-making process, the issues arising, dealing with disagreement and the experience of performing CPR.The interview transcripts were analysed thematically to identify ethically significant elements within the decision, to which normative ethical principles could be applied, in order to develop and describe an ethical approach to CPR decision-making.This approach recognises the separate technical and ethical elements of the CPR decision. It also identifies the ethical significance of the CPR discussion and that it is in the process of the discussion that many of the difficulties inherent in the decision can be resolved to achieve consensus. Four clinical patient groups have been identified, each requiring a different purpose for the discussion. Identifying the aim of each discussion facilitates a more specific patient focussed discussion.This research demonstrates that it is possible to achieve a consistent approach to ethical CPR decision-making. This is an approach that could be taught to doctors and nurses.
Rethinking the ethical foundation of advance care planning
Authors: Robinson C 
Published: May 2011

Research aimsThis interpretive descriptive study was designed to explore the process of advance care planning (ACP).Study design and methodsPatient-centred ACP was undertaken with persons diagnosed with advanced lung cancer and a significant other. Nine family dyads participated (18 participants; 15 conjoint interviews). Follow-up interviews occurred 3 and 6 months after the ACP conversation. The participants were asked about their experience of ACP and its impact on their thinking, conversations and relationships. All interviews were audio-recorded and transcribed verbatim. The accounts were analyzed using the constant comparison method.ResultsMost dyads completed the ACP process. Although the conversations were difficult, the dyads appreciated the opportunity to engage in these important and intimate discussions and evaluated the conversation positively. While the researcher structured the topics of the ACP discussion, the dyad led the interactional process. The process that unfolded during the ACP conversation was deeply relational and was characterized by mutuality, interdependence and shared decision making.ConclusionsThe ethical foundation of ACP has been rooted in individual autonomy and patient self-determination. However, the concept of individual autonomy is contested and there have been many theoretical critiques. Further, the importance of family involvement in all aspects of end-of-life care has been widely acknowledged. Yet, the orientation to individual autonomy remains, which invites clinical tension about the appropriate role of family in ACP related to the notion of avoiding ‘undue influence’. The findings of this study support the adoption of a re-visioned ethical stance encompassing a relational approach to autonomy.
Patients', family members' and healthcare staffs' opinions about existential issues as a base for an educational intervention
Authors: Henoch I , Danielson E , Strang S , Browall M , Melin-Johansson C 
Published: May 2011

ObjectiveTo explore patients', family members' and healthcare staff's opinions about existential issues important to patients with cancer and their relatives.MethodsTwo integrative literature reviews were conducted about existential issues among cancer patients and relatives, and interventions to meet these issues. Four focus groups were conducted with healthcare staff working with cancer patients at different stages about patients' existential issues, and staff's responsibility when existential issues are raised.ResultsIn the patient review, existential issues were divided into two themes: struggle to maintain self-identity and threats to self-identity. Relatives' existential issues concerned living both in and beyond the presence of death, with reminders of death, compelling them to respond to life close to death and seek support. Few interventions directed to patients or relatives applicable to everyday healthcare practice were found. Focus groups with staff revealed four categories of patients' existential issues, life and death, meaning, freedom of choice, relationships and solitude. According to staff, their responsibility concerned achieving an encounter with the patient.ConclusionResults from three studies are congruent in that, patients, relatives and staff agree, although in different ways, about the importance of existential issues to patients and relatives. Healthcare staff was aware of the importance of existential issues and are to some extent confident about how to act when these issues are raised by the patients.Ongoing studiesThe project group now continues implementing findings from these studies in an educational intervention to healthcare staff in different settings, and planning interventions to patients and relatives.
Bedfordshire and Hertfordshire Advance Care Planning Educational Model
Authors: Russell S , Fowler C 
Published: May 2011

The model1responds to the challenges of implementing guidance on advance care planning using levels of education need, and the EoLC workforce levels. It is collaboration across Beds and Herts End of Life Network: 3 PCTs, 2 Cancer Networks, 8 independent hospices, 5 acute trusts, 3 community trusts. The coordinated approach is to ensure quality and standardisation. Guidance alone is not able to embed the advance care planning process in practice. The model1provides templates for facilitators to deliver the variety of education required for different audiences which include patients, carers and the public. The model1uses national documentation and resources for professionals and patients.Steps in the model1are: identifying the workforce, identifying different levels of education, delivering education, measuring confidence levels, evaluation, and measurement of impact and consideration of sustainability.The model1includes, raising public and professional awareness of what ACP is and who it should matter to, delivering the skills to instigate it and the skills for teaching ACP. A blended learning approach includes face to face learning, e-learning using the National e-learning modules and the East of England EoLC care home education projectThe model1is part of implementation guidance, including: communication, information transfer, documentation, process and a competency based learning framework, so that learning is part of a wider learning experience in End of Life Care.
Passion, persistence and pennies
Authors: Barwich D , Hoffmann C , Tayler C , Roberts D 
Published: May 2011

This interactive session will highlight the work of Fraser Healthy Authority (FHA) in British Columbia, Canada over the past 7 years to champion the development, implementation, and dissemination of its Advance Care Planning work for 1.5 million people throughout our system of care – 12 acute cares sites, 7500+ residential/long term care beds, and community programs. The FHALet's Talkprogram, with a passionate commitment to system level change and education, has developed user-friendly, culturally sensitive and easily accessible tools and resources which have been adapted by health and community organizations across Canada, USA and New Zealand for use in their jurisdictions.Our vision has led to a provincial Community of Practice with representatives from government, all BC regional health authorities, disease specific agencies, first responders, as well as the Canadian Hospice Palliative Care Association (CHPCA) ACP Project Task Group to continuously share resources and experiences. We have also been able to influence policy and uptake at a provincial level with a recent decision to adapt the My Voice Workbook and to place FHA'sLet's TalkDVD in all community libraries. Advocacy has resulted in new Advance Directive legislation which broadens options for documentation and choice at end of life.In partnership with Calgary Health Region, Health Canada and the CHPCA, we have been an important leader to support a National Symposium, Consensus and framework documents, and other initiatives that have promoted a Canadian approach to ACP implementation and a national framework and research agenda.
Speak Up - A National Advance Care Planning Campaign in Canada
Authors: Baxter S , Chow K , Hanvey L 
Published: May 2011

The Canadian Hospice Palliative Care Association has established a Canadian National Advance Care Planning (ACP) Day/Campaign – Speak Up: Start the Conversation about End-of-Life Care. This campaign, which includes a national day to recognize ACP, provides an annual opportunity for individuals to discuss their wishes with family, friends and health care professionals while raising overall awareness of the importance of ACP throughout the year. The ACP day/campaign engages professionals and the public alike through partnerships, organizational events and media events. The premier day was launched on 12 April, 2011.The campaign has been launched in partnership with 16 partners, including professional associations (medicine, nursing and law); research organizations and academics; regional health authorities; health-focused non-governmental organizations; and communications experts. It was based on 2 years of work including the development of ACP in Canada: A National Framework through broad consultation with over 100 stakeholders across the country.This workshop will highlight the accomplishments of Speak Up. It will demonstrate the ways that organizations and individuals across a country are able to promote ACP in their communities. The workshop will demonstrate and describe the various resources and tools used in the campaign, and discuss the communications strategies for promoting ACP awareness. Workshop presenters will showcase toolkits for professionals and the public, a dynamic website; and poster and other promotional templates, as well as communication strategies and background resources. Participants will explore how they, their organizations and their communities could develop and become engaged in similar campaigns.
Combining top-down and bottom-up change management strategies in implementation of ACP: the My Wishes program in South West Sydney, Australia
Authors: Shanley C , Johnston L , Walker A 
Published: May 2011

Attempts to introduce advance care planning (ACP) and make it a part of normal clinical practice present significant challenges and one way of approaching these is to utilise the change management literature. One aspect of this literature is the relative importance of top-down and bottom-up strategies to promote and support organisational change.The Sydney South West Area Health Service (SSWAHS) launched the My Wishes Advance Care Planning program in early 2010 and the implementation plan employed both top-down and bottom-up strategies.Key strategies of a top-down nature included: a comprehensive, organisational-wide policy; several new forms as part of the medical records of all hospitals; incorporation of these into the developing electronic medical records system; hospital General Managers having to report on local implementation of the program; involvement of local General Practice Divisions as program partners; and launch of a comprehensive website (http://www.mywishes.org.au).Bottom-up strategies included: community information forums; workshops for health service and residential care staff; liaising with hospital departments and other services to include ACP information on their normal education agenda; putting ACP on the agendas of other initiatives in the health service such as chronic care and end-of life care; and supporting staff who would be advocates for the program.
Let's talk about it: conversations in advance care planning
Authors: Beavan J , Fowler C , Russell S 
Published: May 2011

This workshop is based on Chapter 23 in Thomas and Lobo (2010)1where communication skills are seen as integral to delivering advance care planning (ACP). It reflects the need to teach the principles of ACP alongside communication skills. It recognises that to teach these in isolation may lead to a lack of confidence in the professional engaging patients in discussions around end of life care issues. This workshop draws on models of communication that can lend structure, such as SPIKES, PREPARED, SAGE & THYME and the Calgary-Cambridge model of the consultation. To demonstrate how theory moves into practice, relevant scenarios have been identified to illustrate how they may be used. The theory outlined in Chapter 23 has been taken into the workplace to inform the model of education used in delivering ACP.This work is innovative in understanding the relationship between communication skills and effective ACP and has been put into practice in education development.The workshop will consider the key points of an ACP process. Role played scenarios will be used to engage participants in an interactive process that allows specific communication skills to be demonstrated and reflected upon in the context of ACP.
The three I's of advance care planning education: innovation, interdisciplinary and interactive
Authors: Hoffmann C 
Published: May 2011

Fraser Healthy Authority (FHA) in British Columbia, Canada has been a champion and leader of Advance Care Planning (ACP) provincially and nationally.Standardized education has been an integral part of the success of this program. Two 30 min on-line modules are augmented by 6 h classroom sessions. The on-line modules are interactive and focus on the importance of communication throughout the continuum of care. Classroom sessions provide an opportunity to discuss both personal and professional experiences, enhance ACP communication skills through practice exercises and further understanding of the legal underpinning as well as the role and responsibilities of professionals and substitute decision makers. Classroom sessions are purposely interdisciplinary and typically include professionals such as respiratory therapist, spiritual care practitioners, social workers, nurses, managers, care coordinators, etc who work in various program areas such as outpatient clinics, acute, residential and primary care. This assists to illustrate the number of professionals and perspectives patients and families encounter throughout their journey of care and the need for consistent and standardized ACP approach.Though surveys and on-going feedback, students have stated FHAs education has provided a unique opportunity to learn from colleagues, enhance communication and decisional conflict skills. Students further note that following this education they were able to incorporate ACP with individuals not deemed at the ‘end of life.’ For example, students experienced an 11% increase in conversations with those individuals with chronic illnesses and a 21% increase with healthy adults. To date, 1500 healthcare professionals have completed education.
Advanced care planning for people with motor neurone disease
Authors: Smith G 
Published: May 2011

The proposed study is anticipated to commence in January 2011 with interviews of carers and people with MND, sourced initially through the member registry of the MND Association of Western Australia (MNDAWA). The purpose of these open-ended interviews is to assess their understanding of new Western Australian (WA) legislation relating to Advanced Health Directives (AHD) and Enduring Power of Guardianship (EPG) and individual needs of people with MND in relation to end-of-life care issues.Thematic analysis of the interviews is anticipated to articulate key areas for support for people with MND, particularly how to target education packages specific to their needs.To date, much of the research relating to MND relates to finding a cause or cure. Little research has been undertaken to establish the needs of people diagnosed with MND and no research has been undertaken in WA in relation to the new AHD/EPG legislation. The significance of this proposed research is to provide a baseline of understanding in the specific target community of their knowledge about this legislation and how it may be utilised to support their health care management when they are unable to articulate their desires as their disease progresses.The findings from this research will be transferable to other neurological conditions, as well as other progressive degenerative diseases. It may be useful in community care situations as well as hospice and tertiary hospitals in the event of admission.
The evolution of Austin health's ‘Statement of Choices’
Authors: Jackson L , Detering K , Silvester W , Hancock A 
Published: May 2011

BackgroundThe Respecting Patient Choices team has been doing advance care planning since 2002. We encourage people to nominate a substitute decision maker (SDM) and document their health care wishes on a ‘Statement of Choices’ (SOC). This document has evolved and now includes four components to ensure that the written plans are understood and appropriately acted upon by doctors.They are:to record a person's wishes about future medical treatment based on their goals, values and beliefs.to record this information in a language that doctors would recognise and could act upon.be easy to fill in.to provide prompts for people facilitating the ACP conversation.AimTo evaluate the evolution of the SOC.MethodsA retrospective audit of SOC completed in 2010.ResultsMost people (70%) choose to nominate a SDM and complete a SOC. People generally nominate a family member as their SDM and the majority (>90%) indicate on their SOC that they ‘would not want CPR even if the doctors think it could be beneficial’ and ‘do not want life prolonging treatment (LPT) at all’. 25% provided guidance on what would be an ‘acceptable outcome’. The SOC is recognised by the doctors and is acted upon.Conclusions▶Austin Health has devised a SOC form that enables people to record their medical treatment preferences especially in relation to CPR and LPT.▶The SOC is being further evolved for specific chronic conditions (eg, dialysis).
The role of the community volunteer in advance care planning
Authors: Threlkeld G , Bidstrup B , Downing J 
Published: May 2011

This presentation reports findings about the volunteer's role in an intervention developed through research to establish an accessible and sustainable model of advance care planning (ACP) for older people in rural communities in south eastern Australia. Entrust-U is innovative for initiating ACP through engaging volunteers in a number of roles, including: focussed interviews which move from an evaluative life review to identify values, a trusted decision-maker, and future wishes for care; preparing a life story from these interviews; facilitating conversations with a trusted decision-maker; and preparing a letter to a participant's General Practitioner.Existing palliative care volunteers are given additional training for Entrust-U. Using a facilitated action research design, volunteers engaged in piloting the evolving model participated in briefing, training and debriefing, and a focus group. Informed by the principles of interpretative description, thematic analysis of notes and transcripts of these meetings and evaluation interviews identified three emergent orientations taken by volunteers in their role. This emergent new knowledge indicates each orientation brings a different approach to the project, with these differences exemplified in interviewing styles during the evaluative life review and exploration of ACP. A volunteering orientation focussed on inter-personal relations concentrated on building rapport. An orientation focussed on process, approached the interview as a procedure to be followed. An orientation focussed on the task of ACP adopted an instrumental and linear interview approach. Recognition of these volunteer orientations has significant implications for training and coordination of volunteers.
Sharing stories: a place for aboriginal elders to tell their story, so their journey continues …
Authors: Hawke J , Morris L , Wighton M 
Published: May 2011

Aboriginal organisations throughout Victoria are funded to deliver quality services to Aboriginal people through HACC, Aged Care, and Disability programs. Services are delivered in a culturally appropriate way taking into consideration the Aboriginal way of life and taking a holistic approach which may include the whole family. These services may be in the homes or in residential care facilities.Service Co-ordination was targeted recently with linkages and relationships being made between Aboriginal services and mainstream services to find best practices on how to deliver services to Aboriginal people. A 5 stage consultation process occurred and many communities had great results in achieving their goals and outcomes.A booklet was developed by the Elders, HACC & Disability Services at GEGAC as an information sharing tool for use within the Aboriginal Community for those with Dementia, their families, and the staff involved in their care. In consultation with the local Aboriginal community, the book provides a method of recording a person's life as well as giving them the opportunity to tell their story. It also provides conversation points for aspects that they remember well.Elders who have shared their story have taken great delight in sharing their childhood experiences, life journey, trials and tribulations with staff. All staff have a better insight into the clients life and challenges that they have had to overcome. This booklet has had an extremely positive result from the local community and health related services.