bluuebunny/crossref_metadata_2025_split huggingface dataset:
PROMOTING ADVANCE CARE PLANNING TO REDUCE THE IMPACT OF DEMENTIA: A NEW WEB RESOURCE FROM ALZHEIMER'S AUSTRALIA
Authors: Shanley C 
Published: April 2013

BackgroundAdvance care planning (ACP) is a particularly important issue within dementia care because many people lose the capacity to make their own decisions during their dementia journey.AimThis project, funded by the Dementia Consumer Research Network within Alzheimer's Australia, aims to improve the promotion and uptake of advance care planning for people with dementia in primary and community care.MethodsThe project involves a nationally-focused website, promoted through a broadly based social marketing campaign. Needs assessment involved extensive consultations with both consumers affected by dementia and professionals across Australia as well as an online survey with 249 respondents.ResultsKey aspects of the website are: it moves beyond providing information to include a number of consumer-focused templates that help users take action related to planning ahead; it provides information for people living with dementia and their family carers, healthcare professionals and the general community; and it has information and resources relevant for all States and Territories.DiscussionWhile the website caters to people with early dementia and family carers, it also targets people in the general community who do not have dementia, as ACP is most helpful if done before a person starts to lose capacity through dementia. The project will enlist a number of State and National organisations as campaign supporters to promote a set of core messages about ACP and the website.ConclusionDementia can have a devastating impact on individuals and families, and this new programme to promote ACP will help to reduce that impact.
INVOLVING PEOPLE LIVING WITH DEMENTIA IN RESEARCH: WHAT ARE THE ETHICAL ISSUES AND HOW IS IT COVERED IN ADVANCE CARE PLANNING?
Authors: Doyle C , Dowson L , Roberts G 
Published: April 2013

BackgroundWhile we strive to involve people living with dementia (PWD) in their own health care decision making to the extent that their capacity permits, guidelines for their involvement in research which may not have an immediate personal benefit are less evident. Dementia is a national health priority in Australia, but significant gaps remain in our understanding of how best to involve PWD in research and how to address the issue in advance care planning.AimThis paper summarises research into the questions of what are the ethical issues about involving PWD in research?MethodsA narrative literature review was conducted and analysed with reference to the Australian National Statement on Ethical Conduct in Human Research.ResultsThe review can be summarised under the following themes: substitute judgement; how capacity can vary due to risks; barriers to recruiting people with dementia; how to determine capacity to give consent; and gaining assent rather than consent from participants. The results of the review were further analysed in relation to the current guidelines for research and existing guides for developing advance care plans.DiscussionGaps in the National Statement included: how capacity should be determined; what defines best interests; how assent and dissent by someone with dementia should be determined and respected; and whether or not people with dementia should be included in high-risk research.ConclusionResearchers, ethics committees, health care professionals, PWD and their carers need better guidance about how to address this issue in advance care plans.
REVIEW OF THE INTRODUCTION AND AUDIT OF THE USE OF THEACUTE RESUSCITATION PLANAND RELATED DOCUMENTS TO ENHANCE END-OF-LIFE CARE ACROSS THE TOWNSVILLE HOSPITAL, A LARGE TERTIARY HOSPITAL IN PROVINCIAL QUEENSLAND
Authors: Cairns W , Maluga Y , Lane P , Aitken P , Howe D 
Published: April 2013

BackgroundHistorically many of the medical orders concerning end-of-life (E-o-L) care and ‘not for resuscitation’ (NFR) were inadequate as they did not include evidence of the decision making process or the wishes and capacity of the patient. The introduction in Queensland of the Advance Health Directive and Enduring Power of Attorney (AHD and EPOA)(1998) and the Acute Resuscitation Plan (ARP) (2009)—and the Paediatric ARP (PARP)(2012) – has changed the care delivered to dying patients.AimTo review the impact of the introduction of the use of the ARP and the PARP across The Townsville Hospital, a tertiary hospital in provincial Queensland.MethodsThe use of the ARP or satisfactory equivalent documentation was audited in the medical records of all people who died in The Townsville Hospital over 3 months from 1 January 2013 to 31 March 2013. Staff from across the hospital, including the MET service, were interviewed to ascertain their opinions on the impact of the introduction of these documents.ResultsPreliminary results from a limited QA audit in 2012 indicate that about 80% of dying patients had a resuscitation plan in place when they died. Clinicians are very positive about the benefits.ConclusionThe response of clinicians indicates that care has been improved by the ARP with patients' wishes being respected. The quantitative data are likely to confirm this. The introduction of these forms across the hospital has contributed to a changed culture of health care to the benefit of patients, their families and clinicians.
NEGOTIATING CONFLICT IN END OF LIFE DISCUSSIONS
Authors: Arnold RM 
Published: April 2013

BackgroundConflicts, particularly between health care providers and families regarding end of life care are common.AimTo provide a structured way to think about what causes these conflicts and the communication skills one might use to negotiate conflicts over treatment for seriously ill patients.Results/DiscussionTo help structure, health providers’ thinking about these cases, a question, “Why is this loving and caring family making a decision that you think is unreasonable?” will be discussed. The talk with focus on the psychology and business literature on conflicts to posit three reasons for why conflicts occur: misunderstandings over what is happening; inattention to the feelings associated with these conflicts and rigid beliefs about one’s identity. A variety of communication skills – ranging from ASK-TELL-ASK, to “rolling with resistance” to responding empathically to emotions will be discussed to help negotiate these conflicts.ConclusionA specific framework can help health care providers negotiate conflict with families over care at the end of life.
HOW RECOGNITION OF RELATIONAL KNOWING EXPANDS THE GENERAL PRACTITIONER'S ROLE IN ADVANCE CARE PLANNING
Authors: Robins-Browne K , Hegarty K , Palmer V , Guillemin Marilys , Komesaroff Paul 
Published: April 2013

BackgroundThe general practitioner's (GP) role in advance care planning is commonly tied to their knowledge of the patient and the family, but with limited attention to the nature of this knowing or the expectations it may give rise to (2012). GPs are often involved in advance care planning with the aim of having the patient complete formal documentation (2012). This paper proposes a broader role for the GP based on findings from a PhD study exploring older people's understandings of decision making in incompetence.AimTo explore patient's understanding of the GP's role in decision making in incompetence.MethodsIn-depth interviews with 19 people, aged ≥65 years, recruited from five general practices analysed using Giligan's (Gilliganet al., 2006) listening guide.ResultsParticipants distinguished between their GP and other doctors. Participants described their relationship with their GP as grounds for providing the GP with a distinct role in the event of their future incompetence. Participants expected this relationship to inform the way their GP approached advance care planning.DiscussionParticipants expected the GP to have a richer role reflective than they are commonly provided. Relational ethics and the concept of ‘generalism’ provide a theoretical basis for expanding the GP's role.ConclusionCurrent characterisations of the GP's role overlook much of what they can bring to the process of advance care planning.
DEVELOPING ADVANCE CARE PLANNING AND COMMUNICATION SKILLS IN THE NEW ZEALAND HEALTHCARE WORKFORCE
Authors: Muir S , Manson L 
Published: April 2013

BackgroundResponding to a gap in the healthcare workforce training in advance care planning (ACP) and advanced communications skills, an ACP training programme was initiated. As part of this, an intense 2.5 day Level 2 training course was developed.AimThe course aims to develop participant's knowledge, experience of, and confidence in ACP. Through improving the communication skills of the healthcare workforce, patients and whanau/family are supported to make informed decisions regarding their end of life preferences.MethodsPre-course material provides substantial background and theory in ACP and communication. Participants are also required to engage in their own ACP process before attending the course. Video clips and case studies of people's experiences are used to bring patients and whanau/family into the training environment. Facilitated role play (involving a professional actor and video play back) is a substantial component of the course. Each course can be attended by up to 10 participants.Results164 clinicians completed the course in the 2012 pilot period. Course evaluation notes 93% of participants would definitely recommend the course to other clinicians.Qualitative data analysis of pre and post confidence scores demonstrates statistically significantly increased confidence in:explaining what ACP is, structuring conversations, the benefits of ACPexplaining the NZ legal and ethical frameworkworking with patients agenda, handling strong emotionsdiscussing future care options.DiscussionThis evidence based training programme is the first of its kind in New Zealand. In 2013 we aim to train a further 200 healthcare staff.ConclusionThe course significantly increases participant's confidence in communicating with patients and their whanau/families.
INSTITUTIONAL POLICIES AND GUIDELINES FOR INFORMED CHOICES AND DECISION MAKING: A REVIEW OF ACP POLICIES IN SELECTED DISTRICT HEALTH BOARDS IN NEW ZEALAND
Authors: Chan H Y 
Published: April 2013

BackgroundAlthough New Zealand does not have specific statutes governing advance directives, the Consumer Code provides the right of a consumer to make an advance directive in accordance with the common law. The Advance Care Planning Cooperative in New Zealand has been working towards engaging the public in care planning and participating with the district health boards to promote the same.AimAn examination of whether there are policies in place for advance care planning in the various district health boards and whether they provide the opportunity for people to be involved in making advance care plans.MethodsI reviewed the received responses from the major district health boards in New Zealand soliciting information on the availability of advance care plans or if there are any advance care plans policies in place.ResultsThere are positive indications that advance care planning is in the process of being implemented in the various district health boards surveyed, and they are carried out in specific healthcare units for the time being. Responses are still being received on an ongoing basis at the time of writing but based on the current situations, the response has been encouraging.DiscussionAlthough there are no formal policies in place, the healthcare providers have taken the initiatives to introduce and implement advance care plans to the public.ConclusionAdvance care planning has the potential to facilitate the end-of-life care conversations and supportive programmes are being implemented giving the opportunity for the public to engage in advance care planning.
THE IMPACT OF ADVANCE CARE PLANNING FOR RENAL PATIENTS
Authors: Silvester W , Mawren D , Detering K , Wallis K 
Published: April 2013

BackgroundResearch indicates that renal patients are uninformed about care options and have limited knowledge about illness prognosis and trajectories. Accordingly, facilitated Advance Care Planning (ACP) was introduced to the renal unit at the Austin Hospital in 2010.AimTo evaluate the impact of the introduction of ACP to the Austin Hospital renal unit.MethodsAudit of medical records for (1) 58 patients who received ACP (2010–2012) (2) 58 age and gender matched control patients (2007–2009).ResultsThe rate of withdrawal from dialysis was significantly higher in the implementation group (IG) (p=0.022), as was the involvement of the patient or family in the decision to withdraw dialysis (p=0.001). Medical decisions to withdraw dialysis was equal between groups (p>0.05) More ACP documents were completed in the IG (MEPOA=67%, SOC=27%, RTC=17%) compared to the control group (MEPOA=5%, SOC=10%, RTC=2%). Significantly more wishes were correctly documented in the IG (p<0.001) and more changes to patient management plans were observed (71%). Patients in the IG were more likely to have their wishes respected (p=0.007) and receive treatment in their best interest (p<0.001).DiscussionThe implementation of ACP led to patient wishes being documented and respected, and to dialysis being withdrawn at the patient's or family's request. No difference observed in the involvement of the medical team. More wishes were respected in the IG and more patients received treatment that was in their best interest.ConclusionFacilitated ACP successfully increased the likelihood of wishes being respected and patients receiving treatment in their best interest.
SPIRITUAL CARE NEEDS AND SPIRITUAL CARE RECEIVED
Authors: Phibal Anong , Hatthakit Urai 
Published: April 2013

The purpose of this descriptive study was to compare the level of the spiritual care needs and spiritual care received among Muslim patients at the end of life during hospitalisation. The subjects were recruited using purposive sampling from the end of life Muslim patients during hospitalisation in five main government hospitals, namely Yala Hospital, Pattani Hospital, Narativas Hospital, Betong Hospital, and Su-Ngaikolok Hospital, and/or family caregivers who used to provide care to their dying family members while hospitalised in these hospitals. The data were collected from 174 subjects from November 2008 to January 2009. The research instruments were questionnaires developed by the researcher. Cronbach's α of reliability coefficients of the spiritual care needs among Muslim patients at the end of life during hospitalisation and received spiritual care among Muslim patients at the end of life during hospitalised in the hospitals questionnaires were 0.86 and 0.94, respectively. Data were analysed using percentage, mean, SD and paired t test.The results were as follows:The mean total score of the spiritual care needs of Muslim patients at the end of life during hospitalisation was at a high level. The highest mean score was that of the needs for hope, followed the score of needs for meaningful and purposive life aspects and the needs for relationships with another and/or a supreme being.There was a statistically significant difference between the spiritual care needs and spiritual care received among Muslim patients at the end of life during hospitalisation (p<0.001). This indicated that the level of spiritual care received was high but still did not meet the spiritual care needs of the patients. The findings should be beneficial in providing information for nurses to improve their spiritual care to meet the clients' care needs and be congruent with their belief and culture.
COMMUNICATION SKILLS FOR ADVANCE CARE PLANNING AND END-OF-LIFE CONVERSATIONS
Authors: Arnold RM 
Published: April 2013

BackgroundClinician’s communication skills are central to advance care planning and discussions of goals of care.AimTo discuss and practice three core communication skills needed to discuss goals of care with seriously ill patients.MethodsDiscussion and role playing in small groupsResults/DiscussionThe session will focus on how to assess a patient’s values and then make a recommendation based on those values. The key skills involved include: 1) attending to patient’s emotions; 2) using the patient’s emotions to explore a patient’s hopes and concerns; 3) asking for permission to make a recommendation; and 4) making a recommnedation by “showing one’s work”.ConclusionSkills needed to have discussions with seriously ill patients about their goals can be taught.
ADVANCE CARE PLANNING FROM THE CONSUMERS PERSPECTIVE: THE MAKING OF A DVD
Authors: Billings S , Nicholes M , Gill L , Van Es H 
Published: April 2013

BackgroundRealTime Health is a Melbourne-based online health content producer, specialising in the niche area of ‘patient and carer narrative'. Alfred Health Advance Care Planning (ACP) Service partnered with Realtime Health to make a DVD on the patient and carer experience of going through the process of Advance Care Planning.AimTo produce a consumer driven DVD on ACP that can be utilised as a marketing and education tool for consumers, health care professionals and community groups.MethodsFive consumers and carers were recruited and went through a consent process to participate in the DVD. Each person was chosen because of their unique background to illustrate a variety of experiences such as caring for someone with dementia and making difficult decisions for someone who is dying. The interviews were unscripted which allowed for a natural flow of information.ResultsThe DVD will be showcased on the Realtime Health website in their ‘Speaking form Experience’ series, which comprises an extensive database for a range of illnesses/health issues which is easily accessed by Health Care Professionals and the general public. Alfred Health will have video clips inserted onto the ACP internet and intranet pages and this will be utilised as client, staff and community based education.ConclusionHearing first hand accounts from real people that have lived through an experience is powerful and thought provoking. We hope to motivate individuals to consider doing ACP for themselves.
CASE REPORT: DISABILITY AND ADVANCE CARE PLANNING (ACP): LESSONS LEARNT
Authors: Brean S , Bee Andrea , Brabender Lauren 
Published: April 2013

BackgroundA young man with multiple complex and overlapping disability disorders presenting with cognitive decline was referred for advance care planning. ACP within group homes is increasingly being discussed and investigated yet the process of developing strategies to increase awareness and uptake of advance care planning for disability clients is less defined.AimTo describe the processes undertaken to engage key stakeholders with ACP.MethodsA total of 16 h was spent over a 3 week period to facilitate completion of the advance care plan. Of this 7 h were spent with the family, the remaining 9 h were spent in meetings with key stakeholders and at the group home to support his carers. Communication, time and sensitivity were required for both the family and key stakeholders.ResultsAn ACP was completed. During this process significant learnings were identified in terms of the intense emotional connection some health care providers working in the disability sector hold along with the differing views of the multiple health professionals involved within this case.DiscussionThis case identified that the disability health care providers are also effectively ‘family’ which was unexpected. The diagnostic uncertainty added to the duration of discussions. Areas identified as needing further clarification and discussion included defining slowly dying, ACP and how to enact and follow a plan.ConclusionDefining strategies for ACP within this population requires further work. However we recommend allowing for an extended period of time to raise awareness, educate and most importantly develop trust and rapport with group homes and disability advocates.
CLINICAL DECISION-MAKING MOMENTS: A REALITY FOR ADVANCE CARE PLANNING AT END-OF-LIFE
Authors: Lee S F , Beattie J , O'Connor M , Komessarof P , Gold M , Hunter P 
Published: April 2013

BackgroundDecision-making at the end-of-life is complex and requires significant resources despite the presence of advance care plans. Questions often arise as to the meaning of an advance care plan, what constitutes such a plan and its legal status.AimsThis study aimed to examine issues influencing the decisions of people with advanced medical conditions.MethodsCase study methodology was used to inform the design of the study in two phases. Firstly, chart audits informed development of cases discussed in interviews. A purposive sample (n=20) with experience in advance care planning at end-of-life including health professionals, community leaders, patients and carers were interviewed. The study was conducted in a metropolitan health service.ResultsResults indicate that advance care planning takes place in decision-making moments. The readiness of those involved in decision-making to either commence planning for end-of-life care or to implement a plan at end-of-life to provide for care needs were factors. End-of-life care planning and action occur in a context of difference (people, place and tensions).Discussion and ConclusionsThis study suggests that, whether advance directives are available or not, towards the end of a patient's life, clinical decision-making is often in response to issues that may not have been predicted or discussed in the planning phase. Health professionals and family members may be ill-equipped to engage in discussions, despite the presence of an advance care plan. Policy, education and resources need to support the necessity for in the moment decision-making.AcknowledgementThis project was funded by the National Health and Medical Research Council of Australia Palliative Care Program Grant.
IMPROVING ADVANCE CARE PLANNING AND END OF LIFE CARE IN ACUTE HOSPITALS, USING THE GOLD STANDARDS FRAMEWORK ACUTE HOSPITAL PROGRAMME
Authors: Thomas K , Ahmad N , Battye F 
Published: April 2013

BackgroundCommunication across boundaries of care is often poor and use of advance care planning discussions to determine preferences and needs of patients in hospitals is increasing but still very limited. What is realistic for use of ACP busy hospital wards, and how much could be achieved?AimPhase 2 GSFAH included 8 acute hospitals, ranging from 1 to 3 wards per hospital. A comparative evaluation was carried out before and after the 9 month intervention of the GSFAH training programme.MethodsAn analysis of qualitative and quantitative data was undertaken by ICG GHK to analyse evaluation data from Phase 2 of the acute hospital programme. Eight hospitals participated and completed the following surveys before and 1 year after implementing GSF in their hospitals;Staff SurveyOrganisational SurveyAfter Death/Discharge Analysis (ADA)Qualitative data from a focus groupResultsThe key results included improvements in staff knowledge and confidence in most areas of end of life care, increased identification of patients nearing the end of life, increased advance care planning discussions, improved communication with primary care teams etc details available.DiscussionA hospital compromise for ACP was agreed ie use of introduction, DNAR, LPOA/proxy and noting preferred place of careConclusionThe programme offers hospitals the opportunity to raise awareness around end of life care, develop and educate all staff within the organisation, improve cross boundary care and to move onto to deepen and work towards accreditation.
Republished: Innate and adaptive immune responses in chronic hepatitis B virus infections: towards restoration of immune control of viral infection
Authors: Bertoletti Antonio , Ferrari Carlo 
Published: April 2013

Abstract
Knowledge of the immunological events necessary to control hepatitis B virus (HBV) infection has accelerated in recent years, but their translation towards therapeutic strategies able to achieve a durable HBV suppression has been challenging. The scenario of how HBV deals with the host immunity is presented and used to discuss how the immune response can be harnessed to potentially achieve infection control.