bluuebunny/crossref_metadata_2025_split huggingface dataset:
Increasing all staff awareness and skills to promote the conversation: a multi-staff, regional education approach
Authors: Matthiesen M , Wrigley K 
Published: May 2012

As part of the National End of Life Strategy recommendations and the Northwest Evaluation of Dying Matters Week 2010, Greater Manchester Cheshire Cancer Network aimed to provide enhanced communication skills training to all staff to achieve the following aims:Engaging both public and professionals in end of life conversations/advance care planning.Forging community alliances around end of life conversations and care.GMCCN and the Conversations for Life programme delivered a nationally endorsed approach to assist staff in overcoming the fear of starting these conversations with patients/clients in order to support patient-centred care. “Local champions' were identified to recruit staff and a series of staff development days were held and evaluated across the region. Multi-service staff attended each session, providing greater awareness of the need and benefits of early conversations, multi-disciplinary team communication and enhanced patient-centred planning. Enhanced staff attitudes and approaches were found to support local strategies around end of life, palliative care and care-pathway interventions in various settings: community, care home, acute trust and those working in long-term conditions. Outcomes and evaluations to date from more than 143 participating staff and commissioners will be shared.
A survey of advance care planning in care homes following the GSF care homes training
Authors: Stobbart-Rowlands Margaret , Thomas Keri , Giles Lucy 
Published: May 2012

Advance Care Planning has been introduced as an integral part of The Gold Standards Framework (GSF) Care Homes Training Programme in end of life care to over 2000 care homes in the UK over the last 7 years. The standard for GSF accreditation that they have to attain is that “every resident is offered an ACP discussion”. The GSFCH training programme is a comprehensive phased programme which includes many aspects of end of life care, with over 2000 trained care homes and 300 care homes having attained full accreditation. A feedback survey of accredited homes was undertaken in 2010 and showed:-▶An increase from minimal use of ACP in care homes to over 90% residents included.▶Advance Care Planning contributed to an increase in home deaths from 68% to 98%▶Improved communication skills, and contributed to a culture of openness and realisation.Overall, there was very positive feedback as to the value of ACP and few reported difficulties. This has contributed to overall improvements in care and a reduction in inappropriate hospital admissions.Prior to The GSFCH Training Programmes, Advance Care Planning in Care Homes was not widespread; it has helped to empower both residents and staff.
Advance care planning supported by clinicians trained for end-of-life care in Japanese nursing homes
Authors: Nishikawa M , Yokoe Y , Miura H , Hong Y , Yoshida Y , Shibasaki M , Takamichi K , Okumura N , Endo H , Nakashima K 
Published: May 2012

In Japan, which has the highest rate of aging worldwide, the study of advance care planning (ACP) in nursing homes has only just begun.The aim of this study was to evaluate the utility of three clinical strategies on nursing home ACP, supported by trained ACP clinicians.The optimised strategy was to determine a policy on nursing home ACP, involving 1 doctor, 2 nurses, 1 social worker, and 1 facility director. The policy allowed residents and their families to opt out of undesired medical procedures.The proactive strategy was to conduct a lecture on ACP, involving 51 of 109 nursing home residents' families. We investigated the families' preferences regarding care of their dying relative in the nursing home before and after the lecture, even when death certificates were not promptly issued because many Japanese nursing homes have no full-time doctors.The reactive strategy was to perform a multi-occupational interview on ACP. Two nurses selected families of 21 frail residents with deteriorating physical conditions.The primary end-point was the number of residents who died in the nursing home in accordance with their wishes.The lecture significantly increased the number of families choosing terminal care in the nursing home (p <0.01). Intervention by these three strategies significantly increased the number of residents dying in the nursing home in accordance with their wishes (p <0.01).Intervention by these three strategies is useful and this presentation will demonstrate to other Japanese health professionals the technique of performing ACP in Japanese nursing homes.
Why isn't organ donation part of advance care planning?
Authors: Saul P 
Published: May 2012

Organ and tissue donation preferences are not part of advance care planning (ACP) documents in Australia, either at state or national level. This includes advance directives, powers of attorney and advance resuscitation plans (such as POLST). Paradoxically, the only common advance directive in Australia is about organ donation, as this appears on 5 million driver's licenses in NSW, and 1.5 million entries on the National Organ Donor Registry. Advance care planning for the end of life and expressing a preference about organ and tissue donation have proceeded on entirely separate paths in Australia. This appears to be the same in the US. Why are preferences for organ and tissue donation kept separate from other advance decisions? Options include:▶That potential donors are a different population▶ACP is not wholly about end of life▶ACP does not address post death wishes▶There may be a perception of conflict of interestThis paper critiques these differences, suggesting that commonalities are widespread.Given that organ and tissue donation receives 100 times the funding of ACP in Australia, there are strong motives for pursuing some linkage. A group has been established by the NSW ministry of Health to find common ground. This paper reports the findings of this group, including a suggestion that ACP documents all carry a clear message: “This Directive does not include your preferences about organ and tissue donation. To find out more about this, please go to the following website…”
Challenge of introducing advance care planning policy into Japan
Authors: Miura H , Nishikawa M , Hong YJ , Nakashima K 
Published: May 2012

In Japan, living wills and advance directives are not commonly used, and there is no system or law to support the decision making of patients. Furthermore, there is no available law about the withdrawal of life-sustaining treatments or appointment of a medical attorney. Thus, medical staff must deal with ethical dilemmas related to medical decision making in end-stage disease.To introduce advance care planning policy into Japan, in consideration for law and ethic related to domestic end-of-life care, we compared law and ethic of Victoria, Australia with Japan. In Victoria, patient's decision and attorney's power are privileged by Medical Treatment Act, Guardianship and Administration Board Act and ACP guideline. Whereas, in Japan, there are general guideline for end-of-life care and one of common law, but no law and guideline to mention concrete procedure. In this situation, the withdrawal of respirator and tube feeding are practically prohibited in Japan. However, in healthcare setting, the confirmation of patient family's wish for CPR has been usually performed, and the withholding of life-sustaining treatments has been relatively permitted.We now try to introduce ACP policy into Japan as a stepwise manner; for example we made some formats restricted to the withholding of life-sustaining treatments, and algorithm using ACP considering Japanese orthodox culture.Via these activities, we want to help the globalisation of law and ethic in Japanese end-of-life care.
To encourage uptake of ACP in the community with the RCGP EOLC patient charter
Authors: Thomas Keri 
Published: May 2012

Improving the uptake of Advance Care Planning in the community is highly recommended, but difficult in practice. Empowering people nearing the end-of-life and their families to express their needs and wishes leading to delivery of care in alignment with these preferences is still inadequate. The RCGP RCN End of Life Care Patient Charter is a means to encourage this in practice.The UK RCGP EOLC Strategy developed in 08, and led to the RCGP EOLC Patient Charter, with seven key elements important to patients and their families. The draft was developed with the Patient Partnership Group, GPs and Nurses, with wide consultation and approved by the RCGP Board and sent to every GP Practice. It aims to describe the kind of best practice that patients seek to receive from their Primary Care team and affirms the importance of listening and holding ACP discussions. The first four of the seven statements all relate to requests to be listened to, receive information and regular communication and lead naturally on to ACP discussions.All GP practices in the UK maintain a Palliative Care/GSF Register of patients thought to be in the final months of life and it is recommended good practice that each of these patients be offered and ACP discussion. The Patient Charter is used in various ways e.g. given to patients on the register, displayed in waiting rooms etc.,An adaptation was made for residents in care homes and is to be used as a template for commissioning care.
Disability Perspectives on Public Policy in Advance Care Planning
Authors: Coleman D 
Published: May 2012

Many disabled people have had health care providers suggest and even urge that they forego life-sustaining treatment. Terrie Lincoln's story (seehttp://stories-2.com/HowWeDie/story?sid=4) describes her medical encounters following her spinal cord injury at age nineteen. She was initially unconscious and needed a ventilator for about five months. Doctors repeatedly urged first her parents and then herself to “pull the plug” because her quality of life would be unbearable. She and her parents resisted fifteen years ago, and she went on to complete college, work a full time job and begin raising a baby daughter.At least four concerns should be discussed:▶A recent study shows that having an advance directive makes it less likely that a person will get medical treatments they actually want.▶Futile care policies and laws allow physicians to withhold treatment that they feel is inappropriate, even if they are overruling the individual, surrogate or advance directive.▶Studies show that elder abuse is a significant problem. The perpetrator is often the spouse or adult child, yet these are the first priority surrogate decision makers designated by statute, without protections to prevent an abuser from making health care decisions that are best for them, not the patient.▶A leading neurologist recently admitted in a New York Times interview that it is “not uncommon” for physicians to ignore the appropriate “wait-and-see” period following a brain injury and urge families to withhold life-sustaining treatment.The disability community is concerned that, increasingly, people like Terrie are not surviving.
Measuring success in advance care planning. What outcomes are measurable, and what is important?
Authors: Detering K 
Published: May 2012

When considering the potential benefits of advance care planning (ACP) there are a number of factors that might be considered to be important. These may include preparation for possible future incapacity, preparation for end-o- life and death, and relieving burdens placed on families who may be required to make future medical treatment decisions. Importantly ACP assists patients to communicate their future wishes to their family, and health care providers so that future medical care is consistent with their wishes.Generally speaking ACP will commence with an individual reflecting on his or her values, beliefs, understanding his or her current and future treatment options determining their goals of care and discussing these with others, such as family and doctors. Often during the ACP process a person elects to appoint a substitute decision maker, and they may also decide to formally document their future treatment wishes. Ultimately for most people improving end-of-life care is a major goal and focus of ACP, and ensuring that the care received is consistent with previously expressed wishes is vital.During this presentation I will review some measures which have been utilised to gauge the outcome of ACP at the various steps throughout the process as described above. I will also discuss other factors such as the quality of death and the impact the death on surviving relatives as other potentially important and measurable outcomes of ACP.
The need for activism, building a coalition for change, and public engagement
Authors: Koutsoumpas T 
Published: May 2012

C-TAC is a large, active coalition of patient and consumer groups, care providers, private sector stakeholders, faith-based organizations, health care payers and others. Our vision is that all Americans with advanced illness, especially the sickest and most vulnerable, will receive comprehensive, high-quality care that is consistent with their goals and values and honors their dignity.The C-TAC mission is to transform advanced illness care by empowering consumers, changing the health care delivery system, improving public and private policies, and enhancing provider capacity. We are assembling a diverse group of stakeholders to work together to:▶Identify, design and promote best-practice delivery models that ensure high-quality, coordinated care across all settings.▶Develop and disseminate innovative models of inter-professional advanced care education aimed at improving quality, shared decision making, and clinical care by cultivating respect, compassion and responsiveness in care delivery.▶Develop and advocate for federal and state legislative, regulatory, judicial and administrative initiatives, as well as private policies, to improve care for those with advanced illness.▶Undertake a nationwide campaign of public education and engagement to help patients and their families make more informed decisions and to call for delivery system and policy change.As Baby Boomers age, the number of people struggling with serious advanced illness will expand rapidly; we need action. Now is the time for stakeholders to take the initiative to develop and implement sustainable models of care delivery for the sickest and most vulnerable among us.
Promoting advanced care planning in the community
Authors: Davis A 
Published: May 2012

This abstract will introduce an innovative way of involving the community in discussion on end of life planning. The LMNC is a rural area consisting of beachside areas, with a mixture of young families and retired people, as well as farming properties and town centres. The local population consists of a diverse mixture of individuals from a variety of backgrounds. The LMNC palliative care team hold an annual World Café with the aim being to have conversation around death and dying issues.What is a world cafe?It is the process of harnessing the power of conversation for social value. The conversations link and build on each other. World Café guidelines include listening and understanding concepts which will help gain insight and develop deeper connections to complex issues that guide today's society. The World Café combine conversations from the mind and heart, involves having fun and allowing time to reflect on important issues.The question posed in 2011 was;What are the barriers to end of life planning?The aim is to develop strategies to encourage the wider community to plan for end of life as well as promote community awareness towards the normalcy of death. Lots of wonderful ideas were suggested, with some being put into practice to promote end of life planning throughout the LMNC. This presentation will explore the many ways that end of life planning can be promoted in communities. The results highlighting the importance of good communication, respecting the uniqueness of each individual and strategies to empower each individual to make appropriate decisions.
Courageous Conversations: Advance Care Planning with Teens with Serious Medical Conditions and their Families
Authors: Lyons M , Briggs L 
Published: May 2012

Advance care planning (ACP) is not a “one size fits all” conversation. The Respecting Choices Disease Specific ACP (DSACP) intervention is an in-depth planning process for patients with serious medical conditions and their families. Delivered by trained facilitators in the outpatient setting, patients are assisted to clarify their goals for care in “bad” outcomes situations. In adult populations, this intervention increases understanding of treatment decisions between patients and their chosen surrogates and is a highly satisfying discussion. The DSACP intervention has been applied to HIV+ adolescents through the FAmily-CEntered (FACE) Advance Care Planning (ACP) intervention. In a randomized controlled clinical trial FACE dyads received: (1) Lyon Advance Care Planning Survey©; (2) Respecting Choices DSACP interview®; (3) Five Wishes©. FACE adolescents felt significantly better informed about end-of-life decisions than controls; had a higher congruence on every situation; rated the overall quality of discussion as very good to excellent; were more likely to rate sessions positively, and complete advance directives. There was no increase in anxiety scores post intervention.This application is continuing through an ongoing RCT with HIV+ adolescents as well as teens with cancer.Evidence supports the application of a facilitated ACP process for adolescents with HIV/AIDS and cancer and their families.
European model of palliative care for dementia: Study protocol
Authors: Davies N. , Iliffe S. , Maio L. , Manthorpe J. , Ahmedzai S. 
Published: May 2012

IntroductionDespite increasing attention in the past decade there is still little published work on palliative care (PC) and dementia. There is consensus that there is a need to improve the organisation and structure of PC services for dementia, however little is published on the problems and issues.Aims and MethodsTo develop a model of PC for dementia suitable for European health care systems. We will present the process of developing the model and identifying quality indicators for palliative care in dementia. A mixed methodology is being used starting with document analysis to identify information on healthcare systems and PC. Semi-structured interviews using closed and open questions, aided by the use of vignettes, will be conducted with policy makers and professionals from micro (practitioner), meso (management & support services) and macro (policy) levels of the NHS and social care. This will include professionals from four settings (primary care, care homes, hospitals and hospices). Systematic reviews have been undertaken for reviews of policy for PC for dementia, education in PC for dementia, and carers' perspectives on PC for dementia. A consensus conference in February 2012 will synthesise the evidence to produce the model.ResultsResults of the interviews from five European centres; England, Germany, Italy, the Netherlands and Norway will be presented together with results from document analysis.ConclusionA mixed methodology approach is workable across Europe and yields a complex model of PC in which a range of quality indicators can be applied.
“Mind the Gap”: Patient Knowledge and Understanding of Their Condition, Treatments and Prognosis Remains an Issue For Those With End Stage Heart Failure (ESHF)
Authors: Browne S. , May C. , Macleod U. , Mair F. 
Published: May 2012

IntroductionIt has been suggested that end of life care is rarely discussed with ESHF patients and that many do not appreciate the seriousness of their condition. Consequently, a range of guidelines have been published that aim to improve communication and practice in this sphere.Aims and MethodsTo examine how ESHF patients and carers make sense of their condition and plan for the future, and explore what part health professionals play? Semi-structured interviews with ESHF patients (29) and their carers (19). Interviews explored participants' knowledge and understanding of the condition including prognosis. Qualitative data analysed using thematic analysis but informed by normalisation process theory (NPT). Inclusion criteria: Grade 3 or 4 NYHA classification heart failure; who have ongoing symptoms despite optimal therapy; and have a history of admissions for this condition.ResultsThe gap between recommended “best practice” and patient experience remains wide. While some participants clearly know their condition is “severe” or “serious” there remains a much uncertainty around prognosis. Levels of knowledge, understanding and communication remain suboptimal. Advances in treatments and technologies mean pose new challenges for this patient population. For example, problems relating to understanding and communication surrounding the role of Implantable defibrillators (ICDs) is an emerging issue.ConclusionKnowledge and understanding of diagnosis and prognosis remains problematic. Issues relating to ICDs, particularly deactivation, seem to be an emerging problem. More counselling/support services are needed to help support ESHF patients who have a range of unmet needs and help bridge the gap between published guidelines and patients' real experiences.
Implementing the Liverpool Care Pathway for the Dying Patient in Intensive Care Version 12 (LCP ICU V12) across a regional critical care network
Authors: Parsons D. , Gambles M. , Chapman L. 
Published: May 2012

IntroductionA pilot project is underway in 11 intensive care units within the Cheshire and Merseyside Critical Care Network (CMCCN) to implement the Liverpool Care Pathway for the Dying Patient in Intensive Care Version 12 (LCP ICU V12). Funded by Merseyside and Cheshire Cancer Network, this project will provide support to ICU's to implement and sustain the LCP ICU V12Aims and MethodsImplement LCP ICU V12 into 11 sites within the CMCCN and ensure. Processes and policies are in place to support care in the last hours or days of life. Staff are appropriately trained to deliver care. A mechanism for ongoing collection/sharing of data to sustain delivery of quality care is developed. Identify Key Champions within each ICU who will take responsibility locally for implementation. Supported by the Project LCP ICU Facilitator to, deliver robust education and training and facilitate and monitor the implementation process. Key Champions meet monthly with the Project LCP ICU Facilitator to discuss aspects of the project.ResultsOrganisational information from each ICU will be collected pre and post implementation. Data from completed LCP ICU's in each unit will be analysed descriptively to provide a comparative benchmark of care delivered across the CMCCN. Reflective diaries kept by Key Champions and the LCP ICU Facilitator throughout the project will be analysed thematically to derive an understanding of the process of implementation, facilitating factors, barriers and challenges.ConclusionFindings from all data collected will be presented, discussing implications for wider implementation of the LCP ICU V12.