bluuebunny/crossref_metadata_2025_split huggingface dataset:
Gold standards framework annual meeting. Improving end of life care using gold standards framework
Authors: Thomas K , Stobbart-Rowlands M 
Published: May 2011

Over the last century the way we die has changed and there has been a growing awareness and consideration of end-of-life care as a society. Now, we have the chance to live longer with serious illnesses, to live in the context of our dying, to plan our end-of-life care, to consider the kind of life and death we wish to have through advance care planning discussions – highlighting and improving this further is the purpose of this ACPEL conference.In England, the challenge of improving end-of-life care for all was moved a step-change further by the comprehensive NHS End of Life Care Strategy (2008), helping to mainstream end-of-life care within health and social care. The Strategy supported introducing advance care planning discussions early, and recommended that ‘every organisation involved in providing end of life care will be expected to adopt a coordination process such as the Gold Standards Framework (GSF)’.GSF is an evidence based whole system approach, that aims to improve the quality, coordination and organisation of care leading to better patient outcomes in line with their wishes. It incorporates advance care planning as a key step in the process of integrated delivery. The wide range of training programmes run from the National GSF Centre, enable generalist frontline staff to provide quality care for people nearing the end of life, providing teaching, tools, evaluations, resources and guidance. An update will be provided during the session.The GSF Training Programmes includes those in Primary Care (basic GSF established 2000 and widely used by most GP Practices), care homes/long term facilities, Acute Hospitals, Domiciliary Care, Community Hospitals, spiritual care etc. The new practice-based distance-learning Next Stage GSF programme ‘Going for Gold’ was launched to improve primary care further. Over 2000 care homes have undertaken the 9–12 month practical GSFCH Training and up to 200 homes/year are accredited. The Acute Hospital programme is in its second phase, with benefits demonstrated, but many challenges.One of the key ways forward in future will be the integration of such coordinating frameworks involving frontline generalist providers across boundaries of care, to provide seamless integrated consistent support using a common language. Some examples of best practice using GSF will be described and some planned developments described.
Making Person Centred Care A Reality
Authors: Wigley L , Bailey G 
Published: May 2011

This workshop will showcase innovative work that was led by Helen Sanderson Associates, which culminated in developing ‘Living Well: Thinking and Planning for the End of Your Life’. This work brought together Hull City Council Adult Social Care, Humber and Yorkshire Coast Cancer Network, City Healthcare Partnership, Macmillan, Hull Churches Home from Hospital, Dove House Hospice, patients and carers to consider how person centred thinking tools could be used within a patients journey to increase the quality of their experience of palliative and end of life care.One example of its practical implementation is Edna. Edna is an older person who has dementia. By training and supporting staff in using the tools in their conversations with Edna and her family, staff have gained a better insight into who she is as an individual, her preferences, beliefs and care needs. We have mapped Edna's clinical journey and identified where these tools will provide information to inform health and social care professionals to understand what is important to Edna and what best support looks like.This work is an innovative mechanism for working across health, social care and the third sector. The work adds to what is already known, by providing a method for gathering person centred information that can be used in Advance Care Planning to ensure the care provided is the best possible quality for that individual and their carer. Overall, this workshop will provide a clear example of how person-centred care can be achieved in current service provision.
A complex regional intervention to implement Advance Care Planning in one town's nursing homes: results of and lessons learned from a controlled inter-regional feasibility study
Authors: in der Schmitten J , Rothärmel J S , Rixen S , Hammes B , Briggs L , Wegscheider K , Marckmann G 
Published: May 2011

BackgroundIn Germany, recent legislation confirms that advance directives (ADs) have to be followed if they apply to the medical situation, but regional implementation of advance care planning (ACP) has not yet been described.MethodsIn a longitudinal controlled study, we compared 1 intervention region (4 nursing homes (n/hs), altogether 421 residents) with two control regions (2×5 n/hs, altogether 985 residents). Resident inclusion went from 1 Febraury 2009 to 30 June 2009, observation lasted until 30 June 2010. Primary endpoint is the prevalence of ADs at follow-up, 17 (12) months after the first (last) possible inclusion. Secondary endpoints compare relevance of ADs, involvement of general practitioners (validity), process quality and clinical outcomes. The regional multifaceted intervention on the basis of the US program Respecting Choices, beizeiten begleiten, addressed the related caregiver network.ResultsOf 1406 residents reported to live in the 14 n/hs plus an estimated turnover of 176 residents until the last possible inclusion date, 645 (41%) were willing to participate. Response rates were 38% in the intervention region and 42% in the control region. Non-responder analysis shows an equal distribution of sex and age but a bias towards dependency on nursing care in the responder group. Analysis of outcome data will be completed by May.DiscussionTo our knowledge, this feasibility study is the first to implement a comprehensive ACP approach to regional n/hs and the related caregiver network in a controlled design. System factors are identified that seemed to promote / impede implementation of the ACP program and that may inspire further research.
The Physician Order for Life-Sustaining Treatment in Case of Emergency (POLST-E) as an integral part of the patient advance directive: what are nursing home residents' preferences resulting from a facilitated advance care planning process?
Authors: Marckmann G , Rothärmel J S , Hammes B , Briggs L , Mortsiefer A , in der Schmitten J 
Published: May 2011

BackgroundTreatment decisions in emergencies when the patient is (acutely) incapable pose a challenge for nursing and emergency staff, especially if the attending physician and/or the designated proxy are not available. In Germany, advance directives usually provide insufficient guidance for these situations.MethodsIn a controlled regional intervention study to implement advance care planning (ACP) in one town's nursing homes and the related caregivers' network, we introduced a new form, the POLST-E. It differs from many POLST forms common in the US in two major respects: (1) it is only available as an integral part of a comprehensive advance directive resulting from a facilitated ACP process; (2) its scope is restricted to specific options for emergency treatment.ResultsWe presented a descriptive analysis of all POLST-Es completed in the intervention region during the study period, and compare it with any ACP for emergencies found in the control region (data analysis will be completed by May).DiscussionThe POLST-E bridges the gap between individual planning and honouring the resulting plans in emergency situations by professionals. It therefore is a crucial tool for effective ACP. Further, it changes the facilitation process fundamentally in that patients or proxies are now offered choices with regard to medical emergencies arising from current (not only future hypothetical) health statuses – a choice missing in the traditional development of advance directives in Germany.
Promoting advance care planning in Taiwan – a practical approach to Chinese culture
Authors: Hsieh J G , Wang Y W 
Published: May 2011

In Taiwan, people are deeply influenced by traditional Chinese culture. People do not want to talk about death in daily conversation. Discussing with elders about the death is still a taboo. We need to develop a culture sensitive strategy to promote advance care planning (ACP) in Taiwan society.The objectives of this study are to develop a community program to promote ACP discussion among elderly people. We conducted four sessions of focus group and a total of 30 volunteers participated in the study from August to November 2010. The major themes of the focus group included the value of life, previous experiences about medical care, and opinions about ACP. The results of the researches suggested that an introduction video ‘The Four Seasons’ followed by a video about ACP ‘Metaphor of three wise monkeys’ is most appropriate to motivate ACP discussion in a ‘refuse to talk about death’ society. The contents of these two videos were in accordance with Chinese culture. Promotional brochure for ACP also developed with specific cultural characteristics. The feasibility and acceptance of the process were assessed by the palliative care experts and the residents in the community.The ACP programs for local culture can provide culture-sensitive choices and reflections for elders in Taiwan. They are more likely to discuss their own end-of-life decisions through this program.
Understanding the meaning of end-of-life discussions and related decisions among older South Asians living in East London: a qualitative inquiry
Authors: Venkatasalu M Ramasamy , Seymour J , Arthur T 
Published: May 2011

BackgroundSouth Asians constitute the single largest ethnic minority group in the United Kingdom, yet little is known about their perspectives and experiences on end of life and its related care.AimThis paper examines attitudes and expectations that older South Asians expressed towards the discussion of death and dying and decision making.MethodsFive focus groups and 29 in-depth, semi-structured interviews were conducted with total of 55 older adults aged between 52 and 78 years. Participants from six South Asian ethnic groups were recruited from 11 local community organisations. Constructive grounded theory was used as data analysis approach.FindingsTrust is category that captured views and experiences of participants that consists two key themes. The theme ‘avoidance of discussion’ relates to the relative absence of discussions around death and dying among participants. Participants neither expected to have discussions about their own death and dying within their family, nor to assume any involvement in related issues of decision making. The second theme ‘locus of authority’ relates to beliefs and experiences about the delegation of decision making to family members.ConclusionOlder South Asians living in East London make efforts to adhere to important social and cultural values relating to death and dying, and rebuild and adapt those values during the challenges of living in an emigrant society. Future research should explore the perspectives of second-generation adult children towards end of life care decisions.
The evolving role of a ‘clinical ethicist’
Authors: Detering K , Silvester W 
Published: May 2011

BackgroundAustin health is a 600 bed tertiary hospital with a wide range of acute and sub acute services, including a number of specialist services. Many patients have extremely complex medical and ethical issues that are often raised during the care of these people. In order to address such concerns a ‘clinical ethicist’, who is an experienced doctor has been employed.AimTo perform a retrospective audit of consecutive cases referred to the clinical ethicist.Results104 patients, mean age 66 (range 19–102), 64% male were seen.▶Reason for referral - (≥1 reason per patient).▶Unrealistic patient/family (34%).▶Poor or unrealistic medical assessment of situation (53%).▶Patient/family in need of advance care planning (44%).▶Outcome of referral – treatment related (≥ 1 per patient).▶Patient died or discharged (63%).▶Decision to limit treatment (64%).▶Advance care planning occurred (45%).▶Treating doctors ignored recommendation of clinical ethicist (5%).▶Outcome of referral – people related (≥1 per patient).▶Staff Education (71%).▶Improved staff morale (31%).▶Support of medical decision making (41%).▶Patient/family support (42%).Patient deaths were, on average 70 days (range 1–619) from initial referral.ConclusionEstablishment of the clinical ethicist role has provided support and education to staff and patients. Although not specifically set up to focus on end-of-life decision making and care, the majority of patients seen have died. This role also has an important link in referring patients/families for advance care planning.
International perspectives on advance care planning
Authors: Barwich D , Hoffmann C , Tayler C , Roberts D 
Published: May 2011

Fraser Health Authority in British Columbia, Canada serves 1.5 million people, spanning over 12 communities with 26 000 employees and has been a provincial and national leader in advance care planning (ACP) for the past 7 years. Our goal is to continue to promote and enhance ACP across our health system by promoting conversations with patients and families and improving communication and documentation of decision making in all programs of Fraser Health.In June 2010, we embarked on the Talking it Thru: Medical Orders for Scope of Treatment initiative to further embed ACP practices into all programs with key clinicians and populations clearly identified. This presentation will assist learners to gain further understanding of the importance of systematic engagement in order to embed and sustain ACP in large healthcare organizations and to enhance standardized practices for quality patient-centred care at end of life. The End of Life program provides project leadership and supports programs as they assess current practices, identify gaps and opportunities and plan for implementation.Phase One of this 3 year project included engaging programs by identifying leadership, facilitating Focus Groups and helping program leadership plan for implementation. 16 Focus Groups were held with over 200 clinicians. Input from program areas such Aboriginal Health, Home Health, Primary Care and Medicine as well as discipline areas such as respiratory therapists, social workers and hospitalists have proven invaluable to help shape policy, develop tools and resources and to address educational needs.
Introduction to the national (England) end of life care intelligence network website
Authors: South J Verne 
Published: May 2011

The National End of Life Care Intelligence Network and its website were launched in June 2010. It is a national resource for policy makers and planners and providers of End of Life care as well as researchers, media and the public. The aim is to bring together in one easily accessible place evidence on End of Life Care particularly using data sources. The website (http://www.endoflifecare-intelligence.org.uk/home.aspx) has several domains: Local profiles by Local Authority (numbers and rates of deaths by major cause, age and place of death); Reports (Deaths In Older Adults in England; Variations In Place of Death in England; Deaths Registered as Occurring ‘Elsewhere’; External Causes of Death); A compendium of data sources; Advice and information – signposting for patients, their relatives and carers; Email alerts – sign up to receive regular information; News and events – keep up-to-date with developments. It is planned to expand the functionality by links with academic partners to bring more of the research evidence together with the routine data analyses. The concept is new and innovative and has already been widely acclaimed as a useful resource for all those working in the End of Life Care field. Commissioners and providers are actively using the website to inform changes in care at a local level. National outputs are informing the development of National Policy.There is no other web-based resource which is similar. It provides a completely new approach to accessing National and Local information. The website and its functionality will be demonstrated to show how its use can advance knowledge and understanding of the quality of End of Life Care.
Pattern of hospital admission in the final year of life
Authors: Lyons P , Verne J 
Published: May 2011

This study examines the patterns of hospital care received in the final year of life for the disease groups; cancer, cardiovascular disease (CVD), respiratory and stroke. This will inform policy around End of Life Care pathways and costing models for hospitals.Our study moves beyond the historical cross-sectional approach, directly linking hospital records to individual death records. The Office of National Statistics (ONS) and Hospital Episodes Statistics (HES) linkage provides a longitudinal view of the hospital services received 12 months before death. Using this linked data we have investigated the frequency, length and type of admission (elective, emergency) received.Our cohort includes individuals that died in England 2004–2008 and had at least one admission to hospital in the final year of life. We analysed how this varied with underlying cause of death, age, gender, deprivation and Local Authority (LA) of residence.Our study found that 78% of all ONS deaths had at least one hospital admission in the year before death; 88% of cancer deaths and 66% of CVD deaths had an admission. The average number of admissions a person will have in the final year of life is 3.5, this varies from Cancer deaths at 5.1 admissions to Stroke deaths with 2.3 admissions. The average number of bed days in the final year of life is 29.7; 36 days for stroke deaths and 18.1 days for CVD. The average length of stay in the final year of life is 8.5 days; 15.7 days for stroke and 5.7 days for Cancer deaths.
The legal status of guardians in advance care planning in Australia
Authors: Schyvens M 
Published: May 2011

Australia, like many countries, is currently debating the optimum means of permitting individuals to engage in advance care planning within the confines of our respective legal systems.‘No decision without me’ is a message in accord with the UN Convention on the Rights of Persons Disabilities. This convention is an important consideration for our legal systems in developing means of validating people's advance care planning wishes. It also brings with it great challenges for guardians as substitute decision makers when called upon to engage in advance care planning.These themes will be the focus of a presentation outlining:▶Current recognition status of advance care planning in Australian jurisdictions;▶The debate for the need for new legislation in Australia to give recognition and framework to advance care planning;▶The challenges facing appointed guardians called upon to engage in advance care planning, the limitations on their authority and the impact of the UN Convention; and▶The importance of developing uniform language when engaging in advance care planning to enhance legal validity and community acceptance – an examination of the current development of an Australian national framework for advance care planning.
Advance care planning in dementia: great in theory, a challenge in practice
Authors: Robinson L , Dickinson C , Bamford C , Exley C , Hughes J 
Published: May 2011

IntroductionAdvance care planning (ACP) allows people to record their wishes about future health care choices before their capacity is lost; in dementia, where capacity loss is inevitable, ACP has the potential to facilitate a person-centred care approach to care. This study explored the views of both professionals and people with dementia and their families about how, and if, ACP is implemented in dementia.MethodFocus groups (n=14) and one-to-one interviews (n=17) were used to explore the views of a wide range of professionals (health and social care, advocacy and legal services) involved in dementia care; 1–1 interviews were carried out with people with dementia (n=17) and their main carers (n=29).ResultsACP is not routinely integrated into dementia services although some examples of good practice exist. Contrary to guidance, ACP discussions often occur late in the illness, with subsequent proxy decision-making. Professionals find ACP challenging; there appear to be additional difficulties in dementia around responsibility, assessment of capacity and legal dilemmas. People with dementia and their families do plan ahead in many areas for example, making wills and lasting power of attorney for finance. However, making plans for future healthcare appears more difficult due to a preference to ‘take one day at a time’.ConclusionsACP offers opportunities for people to plan ahead but is currently not a routine part of dementia care. Additional training for professionals may help overcome some of the barriers and hence support the people with dementia and their families who do wish to undertake this.
Developing planning for the future in a memory service
Authors: Burleigh S , Poppe M 
Published: May 2011

The Modernisation Initiative End of Life Care Programme aim is to achieve excellent end of life care for all in Lambeth and Southwark, including those with dementia and their carers.Earlier diagnosis of dementia can enable the person affected to indicate their future care and treatment preferences through completing a future care plan. Later, in the more advanced stages of dementia, there may be deterioration in cognitive functioning which affects people's capacity to express their wishes.Prior to the intervention, the views and opinions were sought from service users and staff. These were of the usefulness of the intervention, the questions in the document as well as style and language.An implementation study was set up to deliver future care planning to people who received a diagnosis of dementia though a new memory service.The Nurse Advisor developed and delivered training for mental health care professionals in future care planning using interactive forum theatre and role play. This training was conducted and evaluated as part of the induction of a new memory service as well as to Community Mental Health teams for older adults.Following training, facilitation and role modelling by the Nurse Advisor, people with dementia were offered the opportunity to plan for their future. Staff were supported in reflective learning sessions.Following ethical approval, the researcher conducted interviews with people with dementia and their families to evaluate the acceptability and effectiveness of the future care planning conversations and their feelings about these conversations.