bluuebunny/crossref_metadata_2025_split huggingface dataset:
Ensuring Quality and Choice in End of Life Care
Authors: Williams J 
Published: May 2011

The presentation will provide a brief background to CQC, its role, the legislation that governs how it operates, its strategic priorities and its principal methodologies. It will identify how CQC will assess whether provider organisations are complying with regulatory requirements and the action that CQC might take if it found that organisations were not compliant.In particular, it will focus on outcomes from CQC's Essential Standards of Quality and Safety which are key to the delivery of end of life care that meets these requirements, which will include (among other issues):Outcome 1 - Respecting and Involving People who use services: ensuring people are involved in planning their care, that decisions and rights are respected and that people and their representatives are supported in making informed choices etc.Outcome 4 - Care and welfare: ensuring that people have the care, treatment and support they need at the end of their life, including access to special palliative care services and pain control; that they are involved in decision making; that they have appropriate information; their families' (or those close to them with them/supporting them) wishes are respected; and that they have a dignified death with appropriate respect, privacy, dignity and comfort needs met.Outcome 6 - Co operating with other providers: that all providers involved in end of life care work in partnership to ensure appropriate access to services, for example district nurses, palliative care services, appropriate transfers between care providers.
Dying in acute care
Authors: Saul P 
Published: May 2011

The demography of dying in Australia, as in other developed countries, has shifted dramatically in a single generation. Cause of death, place of death and mode of dying are all unrecognisable to the generation currently facing death. The fastest growing causes of death in Australia are dementia (now third commonest) and diabetes (sixth), two thirds die in acute care, most from a decision to withhold or withdraw treatment.Acute care has largely failed to embrace its role as the dominant place of death, and remains committed to a set of defaults that I call the DED (the Do Everything Defaults). Palliative Care has failed, in many cases, to fill the gap.This paper details a series of projects running in NSW, Australia that attempt to link our advancing knowledge of advance care planning with existing systems of care. Specifically,▶introducing new admission processes that capture preferences for substitute decision makers▶using a risk of death tool administered by nurses to trigger a MOLST process▶modifying the existing deteriorating patient systems (including MET)▶modifying observation charts for those in the process of dying that parallels existing charts but with altered parameters. These would function as an alternative to existing end of life pathways, which have not been a great success.The aim is to produce a ‘chain of palliation’ to parallel the dominant ‘chain of survival’.
Advance care planning influences patient's wishes for future medical treatments, and the nomination of surrogates
Authors: Detering K , Hancock A , Reade M , Silvester W 
Published: May 2011

BackgroundAdvance care planning (ACP) assists patients to document their future medical treatment wishes and to appoint a surrogate. It is assumed that discussion with patients about their medical conditions, treatment and prognosis will influence and potentially change these decisions.AimTo assess the impact of ACP on decision-making regarding: (1) Patient wishes regarding cardiopulmonary resuscitation (CPR), and life-prolonging treatment (LPT); (2) Whether they have and correctly report having a surrogate.MethodsIn our previous study (BMJ2010) of 154 patients allocated to ACP intervention, 125 completed ACP and108 expressed wishes regarding CPR and LPT. At study enrolment all patients were asked whether they already had any wishes on end-of-life care including CPR and LPT, and whether they already had a surrogate.Results▶LPT, and CPR (%) DecisionsYesYes- DOO*NoDelegate#Don't knowCPRPre-ACP251943013Post-ACP43049170LPTPre-ACP6272902Post-ACP33636232*depending on outcome#delegating decision-making to surrogate/doctor.Nomination of surrogateAfter ACP 58 patients had a surrogate, 18 of which were pre-existing. At enrolment only 10 of these correctly identified they had a surrogate, 6 said they did not and 2 didn't know.ConclusionFollowing ACP many patients change their wishes regarding CPR, and LPT, often to less aggressive treatments and often choose to delegate decision making to others. ACP also assists patients to nominate and understand the important role of surrogates.
How using secondary data sources can enhance our understanding of end-of-life care
Authors: Bowtell N , Verne J 
Published: May 2011

The National End of Life Care Strategy outlined the reforms necessary to improve the quality of life and dying in England. Information is power to those who want to improve care, and a compendium was commissioned to bring together available data sources on end of life, in one unique place.MethodsA systematic review of routine data sources on end of life care. Resources were reviewed for their relevance, coverage, temporality and timeliness, completeness and representativeness. A web-based tool was launched on the NEoLCIN website.ResultsThe measure, ‘The percentage of all deaths that occur at home’, has been adopted as a national indicator (N129). However, the complexity of death and the broad range of factors influencing decision making, mean this measure should be interpreted using a much wider range of data.To date 59 unique data sources have been identified held by 15 organisations, covering 14 topics.Data sources are available on service infrastructure, demography and disease trajectories. Service infrastructure sources include: hospice care (2), palliative care in hospitals (3), primary care (2), residential and nursing homes (8), social care (19), emergency hospital care (1) prison (1) and carers (5). Nine data sources can be used for the assessment of population change in terms of size, composition and health status. Eight data sources provide data on illness and disease progression, to further understand place and quality of death.ConclusionFor the first time, data sources on end of life care have been assessed and are now available on one site.
Making difficult conversations easier: the cards, the kit and the quill
Authors: Fairbank E 
Published: May 2011

The preferences of patients, families and health professionals for preparations for dying have been identified by Steinhauser (JPSMSeptember 2001;22(3)).Based on this work, CodaAlliance has developed the ‘GoWish’ card game to help patients communicate their preferences to families and health professionals.Palliative Care The ‘Doing it in Style’ Kit, collated by the author, also builds on Steinhauser's work and others, to develop a framework of 10 steps describing effective strategies for preparing for dying. Advance Care Planning features prominently.A Statement of Choices, derived from the Respecting Patient Choices program, Austin Health, Melbourne, Australia has been modified specifically for palliative care use, to document the wishes of people in regard to future treatments and other end of life issues. During its completion, the new form guides the discussion to allow the values and beliefs of a person to be noted, provides relevant information about life prolonging treatments, confirms ongoing palliative care measures and gives reassurance that the dying phase of the illness will not be prolonged.The cards, the kit and the quill are combined in a new, innovative way to initiate conversations and then to help people express their desires in written form.Feedback has been positive.Patients feel that they remain involved in their own care, and that life will continue to have meaning and dignity.Health professionals state that they now have resources that give structure to their professional relationships, avoid gaps and prevent crises.
Family members' views and experiences of discussing preferences and wishes for end-of-life care
Authors: Horne G , Seymour J , Payne S 
Published: May 2011

AimThis study is part of a larger cross-sectional study exploring the views of people affected by lung cancer about their experiences of discussing preferences and wishes for end of life care.Design and method19 family members (16 women, 3 men) took part in single, joint and group interviews conducted between: 2006 and 2008. Participants were mainly from lower socio-economic classes in the north of England, UK.FindingsThe main findings were that family members supported the person with lung cancer to ‘carry on as normal’, which included continuing routine activities, planning holidays and special celebrations. They experienced emotional upset following disclosure of the person's prognosis and expressed feelings of loneliness and isolation when their needs for information about the future were not fulfilled. They also expressed the fear of being seen as ‘disloyal’ by the person with lung cancer if they initiated the conversation about plans for end of life care. Family members supported the person with lung cancer in practical planning for the future such as planning funerals, wills and financial plans. They had their own needs for practical planning in relation to sourcing equipment and services for the future to support them in their caring role.ConclusionHealth and social care professionals conducting advance care planning (ACP) need to consider the needs of family members about discussing preferences and wishes for end of life care, which may be different to those living with cancer. ACP interventions should be developed to meet the needs of both patients and their family members.
Palliative care: improving care at the coalface
Authors: Giugni C 
Published: May 2011

NSAP is a quality improvement program available for all specialist palliative care services across Australia. It enables services to engage in continuous quality improvement through self assessment against the Palliative Care Australia standards for providing quality palliative care for all Australians, action plan development and implementation, as well as peer mentorship.This presentation will provide an analysis of the self assessment reports received prior to 30 June, 2010, a total of 69 reports. Considering the overall priority for improvement data and the 957 action items provided by these reports, it is clear that national priorities are focused on three key areas:Skill development in continuous quality improvementCare planning (incorporating assessment)Support for carers.This analysis foreshadows a real opportunity to develop processes for working collaboratively across these core areas for improvement based on an emerging understanding of the needs of the sector, in addition to supporting system level change to enable improvement in palliative care for patients and their families/carers. NSAP has commenced a project focusing on two of the above key areas (skill development in continuous quality improvement and care planning) as a starting point. In addition to this, further analysis of data available to NSAP will continue as the aggregated data set grows with ongoing submission of self assessments.
Creating a Volunteer Training Program to support the Advance Care Planning Process
Authors: Renton J , Detering K , Fletcher J , Davis J , Silvester W 
Published: May 2011

IntroductionThe ageing population and the increasing need advance care planning (ACP) increase the need to bring ACP to the community's attention. Limited resources led us to develop a group of volunteers to raise public awareness through group presentations.AimTo create and pilot a structured volunteer program using a professional volunteer workforce to provide ACP education to community and outpatient groups.ProcessA needs analysis was completed, along with identification of gaps within our service. A volunteer selection, screening and training program were developed. The key themes addressed in the training include:▶ACP▶Public speaking▶Answering difficult questions▶Using available resources▶Processes of coordinated ACP.ResultsFollowing training, volunteers began presentations to service clubs (eg Rotary, Apex), church groups and hospital rehabilitation programs. Evaluation on each stage of the project occurred. Ongoing support and performance assessment of volunteers occurred to maintain quality standards and ensure presentations remain focused on ACP.ConclusionThis pilot project demonstrates the ability to create, within existing infrastructure, a volunteer program to deliver the ACP message to the community. This process has highlighted a broader potential for volunteers to facilitate specific ACP assistance. The community ownership of the volunteer program means that the ACP needs of the community are being heard and addressed and solutions are being created from within the community.
Evolution of advance care planning in Australia – launching the new international advance care planning and end of life care society
Authors: Silvester W 
Published: May 2011

Although there were small areas of interest in advance care planning (ACP) and the ability to refuse treatment in Australia as early as 1987, the implementation of and research in, ACP began in 2002 with Australian Federal government and Victorian State government funding of the Respecting Patient Choices Program. This program has been established in many hospitals, health services and aged care homes throughout Australia and has been adapted successfully to local conditions and legislation. There is an increasing body of research to support ACP, including a randomised controlled trial published in the BMJ (BMJ2010;340:c1345).With the growing public and political interest in ACP a number of new initiatives have been undertaken including:▶new supportive legislation in several states and territories▶a National government sponsored review of existing legislation with recommendations for achieving national uniformity▶recommendations in the Australian National Health & Hospitals Reform Commission Report that ACP should be available in all aged care homes.The holding of the Inaugural International ACP conference in Melbourne in April 2010 galvanised interest and support for ACP in Australia and raised awareness internationally, leading to the establishment of International Society of Advance Care Planning and End of Life Care -ACPEL Society with hundreds of members joining from around the world. The Society will be officially launched at a London conference.
What do journalists think about end-of-life care and advance care planning? A media insider's account of reporting from the front line of the end-of-life care debate in Australia
Authors: Davies J , Silvester W 
Published: May 2011

Australia has a unique history in its experience with end of life care. It was the first place in the world to – briefly- legalise euthanasia. But there has been minimal public debate about Advance Care Planning (ACP) and very little media attention.This presentation aims to take delegates behind the headlines and into the real world of editorial decision making that determines what is- and what isn't- news worthy when it comes to generating or responding to stories about dying with dignity.You will hear what it is really like as a reporter to write about this complex and ethically challenging area of social policy within the confines of an industry that views the world in black and white.Is ACP simply not sexy enough for mainstream media or are there lessons to be learned from the pro-euthanasia lobby whose tactics have been so successful in helping to shape the end of life care debate in Australia?As a former senior journalist at Australia's leading newspapers,the presenter has written from all vantage points on the subject. She will take delegates through some of those stories and the people behind them.The presentation will illustrate why it is imperative for health professionals working in ACP to make time and muster the courage to take journalists into their world if they really want to make a positive difference to the way we all die.The media principles to be discussed have a global application.
Handing over the reins – establishing long term strategies for embedding advance care planning in rural and remote communities in Australia
Authors: Ashley C 
Published: May 2011

Establishing effective advance care planning (ACP) implementation programs in communities is challenging at the best of times – but when the region extends to over 166 000 square kilometres of rural and remote country, and human resources are limited, strategies need to have the ‘wow’ factor in order to ensure sustainability.In 2009, a project to introduce ACP was set up in southern NSW as part of a state wide approach. Since that time, much has happened, including structural reform at state level resulting in changes in regional boundaries, cessation of funding for the continuation of the project and the worst floods in 70 years!In order to ensure the sustainability of the program, the last year has seen a shift from ‘implementation’ of ACP to a ‘handing over the reins’ approach. Various activities have been introduced to consolidate ACP at a local level. These have included working with health managers to embed ACP in quality improvement and risk management activities, creating links with local divisions of general practice and with community groups, working with staff and residents in aged care facilities, establishing a range of accessible resources for health professionals, and passing on responsibility for education to local educators and clinicians.The presentation will demonstrate that evidence is mounting regarding the effectiveness of these strategies in moving ACP from ‘project’ status to being embedded as an important component in ensuring effective health delivery.
An Eastern world view of advance care planning
Authors: Hui Edwin C 
Published: May 2011

A study of 300 cancer patients in Hong Kong shows that 92% of patients include themselves in decision-making, while 71% include their family and 65% their doctor. 68 percent of patients who include themselves in decision-making prefer to do so jointly with others; 55% want to join both the doctor and family to form a triad; 13% want decision-making with the family as a dyad and exclude the doctor; only 3% want a decision-making dyad with the doctor without their family. Less than 5% of patients want decision-making by ‘doctor-alone’, ‘patient-doctor’ or ‘doctor-family’ dyads and <1% of patients desire decision-making by ‘family-alone’.In this study, only 25% patients have discussed their post-competent treatment preferences with other people; 93% patients have never heard of AD, and 25% refuse to discuss AD. After explaining AD to patients who are willing to talk about it, patients agree that AD would protect their autonomy in their post-competent treatment choices. Yet, two-third of patients refuse to sign an AD instantly, and prefer to leave oral instructions to specify their post-competent treatment preferences. Among patients who refuse to sign an AD, 42% want their family to make decisions when they become incompetent. It seems that Chinese cancer patients only rely on their family in their post-competent decision-making, but refuse to delegate decision-making to their family when they are still competent. The implications of these findings will be discussed.
Using stages of planning to improve the success of advance care planning
Authors: Hammes B J , Briggs L A 
Published: May 2011

What we mean by ‘advance directives’, in the United States has been largely determined by the creation of laws and regulations. The unintended consequence of this approach has been the creation of advance directives as one-time, singular events intended to be effective for all individuals regardless of age, stage of health, or changing goals and values. The literature in the USA has clearly demonstrated the failure of this legalistic approach.Advance care planning (ACP) as a process of communication has emerged as an alternative to this failed approach. However, ACP is not a ‘one size fits all’ intervention. It is unrealistic and unhelpful to expect individuals to make healthcare decisions that will apply to all situations that may happen for some future point in time. Rather, ACP is more effective when it is focused on the individual's stage of health and the realistic decisions that may be needed for that stage. This staged approach to planning includes person-centred interactions and shared decision-making with professionals who are well trained in a standardized approach.In this presentation the speaker will discuss the advantages of one approach to the stages of planning, described as First (ie, basic ACP for the healthy adult), Next (ie, disease-specific ACP for progressive chronic illness with complications), and Last Steps (ie, those expected to die in the next 12 months). This stage of planning approach makes it possible to identify the content of planning relevant for the person at each stage, when to do it, how to document it and how to train professionals to competently assist in the planning process. Quality improvement activities can be specifically designed to evaluate if the goals of planning are achieved.This staged approach to planning is individualized and realistic. It builds care planning into the routines of care, enhances person-centred decision-making and provides a system for reviewing and updating plans over time. It is more likely an individual's goals and values will be known and respected.
An Australian state's experience of implementing advance care planning: snapshots from Victorian health services
Authors: Doran N 
Published: May 2011

The structured, supported platform provided by the Respecting Patient Choices program has been the foundation and precursor to the development of innovative and responsive Advance Care Planning (ACP) models that address the varied needs of our diverse population.The introduction of ACP in Victoria has initially been through our health services and via the Respecting Patient Choices program. Austin Health, a major metropolitan health service was able to put a compelling case to the Victorian Government to introduce the Respecting Patient Choices program into our health services, with eight health services currently participating and with Austin Health mentoring and supporting implementation.This structured approach has had many benefits in terms of lessons learnt and has been the springboard for innovation in the development and evolution of ACP implementation and has allowed Victoria to explore and support a range of innovative approaches to implementing ACP.A series of semi structured interviews with ACP Clinical Leads and Program Managers from a range of Victorian health services identifies the models of ACP implementation, key learnings, outcomes and ongoing challenges that are influencing current and future program direction.The data is informing the body of evidence relating to ACP implementation and provides useful guidance for the development of:▶ACP programs, in terms of translating ACP into local environments and adopting and adapting to address local needs;▶key performance indicators;▶an evaluation framework; and▶policy to drive and support ACP.