bluuebunny/crossref_metadata_2025_split huggingface dataset:
KNOWLEDGE AND PERCEPTION ON END-OF-LIFE- CARE, DEATH AND DYING AMONG PALLIATIVE NURSES
Authors: Subramanian P , Chinna K 
Published: April 2013

BackgroundEvery individual deserved to have good death. Good death is ‘peaceful and dignified’ without unnecessary suffering of dying. Nursing perspective of ‘a good death’ is centred in the ability to provide comfort to all involved. Even though many studies have highlighted nurses' perspectives on end-of-life-care, this is the first study conducted among Malaysian nurses'.AimThis study aims to investigate palliative nurses' knowledge and perception on end-of-life-care, death and dying.MethodsA survey was conducted using questionnaire among 177 palliative nurses working in a urban hospital,ResultsMajority of the respondents (75%) had good knowledge on end of life care but have poor perception on end-of-life- care (57%), experiences towards moment of death (56%) and experience at the end-of-life (86%). Only 31 (15.5%) scored good perception on the overall care. The χ2statistic showed a significant relationship between age and work experience with nurses and perception on end-of-life- care at p value of <0.05.DiscussionAlthough efforts are being made to improve nurses knowledge on end of life care, practicing nurses still lack of knowledge in providing end-of-life -care and the study findings shows poor perception on end of life care, death and dying. One of the reasons could be due to lack of experience with majority of nurses have less than 1 year experience and below 30 years old.ConclusionContinued practice development is needed in improving end- of- life- care.
ADVANCE CARE PLANNING IN JAPANESE HOSPITALS-USEFULNESS OF END-OF-LIFE CARE TEAM
Authors: Yokoe Y , Nishikawa M , Kubokawa N , Fukuda K , Hattori H , Yong-Jae H , Miura H , Endo H , Nakashima K 
Published: April 2013

BackgroundAlthough advance care planning (ACP) in hospitals is important, the best means of promoting it in Japan remain to be clarified.AimThe primary aim of this study was to evaluate the usefulness of end-of-life care teams (EOLCTs) for both cancer and non-cancer patients. The secondary aim was to evaluate the usefulness of narrative life reviews and ACP conducted by full-time EOLCT nurses using qualitative analysis.MethodsWe conducted the ‘three-pillar strategy for decision making’ for the families of 209 patients. There are three large pillars, (1) patient's wishes; (2) family's wishes; and (3) medical judgment. There are also three key pillars in regard to patients' wishes: (1) ‘Present’: Regardless of the patient's competence/incompetence, any subtle signs shown by the patient must be noted; (2) ‘Past’: ACP and narrative life reviews must be checked; and (3) ‘Future’: The best future interests must be considered. The patient's wish is the most important pillar.ResultsIntervention by the three-pillar strategy in EOLCT decision making tended to increase the number of home deaths in accordance with patients' wishes in collaboration with the home care support ward. Narrative life reviews by nurses led to enhancement of ACP.DiscussionThe most important finding was that patients' and their families' wishes were respected.ConclusionThe three-pillar strategy used by EOLCT in decision making was useful in enhancing hospitals' ACP.
‘ADVANCE CARE YARNING’ BOOKLET
Authors: Jones L , Burgess S , Seal M 
Published: April 2013

BackgroundAboriginal Community Health Worker Shane Burgess was employed in 2010 as a Project Officer for the Respecting Patient Choices programme under the Ambulatory and Primary Health Care Directorate. Shane realised that raising awareness throughout the Aboriginal community about the importance of advance care planning requires organisations and staff to have appropriate resources. He hoped such resource might help overcome the great dilemmas around health decisions and moving from country.AimTo produce a culturally appropriate resource for the Aboriginal Community around advance care planning.MethodsShane met with Aboriginal Health Workers and made `well received' progress with the vision for an ‘Advance care yarning’ booklet.Consultation with Aboriginal Health Care Workers about the booklet was favourable. The regional media team assisted with the booklet formatting, using a beautiful painting by Aboriginal artist Marlene from Alice Springs. Permission has been obtained for longevity of images used.ResultsA Booklet was published with the approval of Aboriginal people and senior Aboriginal Management in Health. Language, artwork and photographs were changed to appeal specifically to the Aboriginal CommunityDiscussionTheRPC Advance Care Planning booklet(Austin Health) was modified to relate to both remote and metropolitan Aboriginal communities. Over 2000 copies have been requested from Aboriginal services and other health services across Australia. The booklet is utilised in current training and development programmesConclusionA tool is now provided where there was a gap for engaging and informing Aboriginal people about advanced care planning for Advanced Care Directives.The booklet has been well received and has been republished.
CURRENT ADVANCE DIRECTIVE USE IN SOUTH AUSTRALIA: RESULTS FROM THE 2012 SPRING SOUTH AUSTRALIAN HEALTH OMNIBUS SURVEY
Authors: Bradley S L , Woodman R J , Phillips P A , Tieman J 
Published: April 2013

BackgroundAdvance directives enable autonomous decision-making for future healthcare and welfare and are an integral part of many advance care planning programmes. Current evidence of use of these instruments in South Australia (SA) is presented.AimTo ascertain the prevalence and type of advance directives used in SA.MethodsQuestions exploring the prevalence and type of advance directives experienced by the South Australian public were submitted to the Spring South Australian Health Omnibus Survey (HOS) 2012. The HOS has been conducted regularly since 1991 and is used by government and nongovernment organisations to assess the healthcare needs of the South Australian community. The survey comprised a random sample of 3055 members of the public drawn in a multi-stage, systematic sampling technique*.ResultsAnalysis of an unweighted sample of 3055 participants showed that 40% had not completed any advance directive and that 27% have no interest in learning about advance directives. Age and other demographic factors were indicative of differences in participation rates.DiscussionUsing the HOS survey enabled analysis of demographic and sociological characteristics of the SA public with prevalence and type of advance directives experienced and provided evidence-based knowledge of the public's engagement in autonomous decision-making for future healthcare and welfare.ConclusionAccurate ascertainment of the South Australian public's current levels of knowledge and engagement with advance directives can assist future advance care planning initiatives in South Australia as well as provide a basis for further research designed to enhance completion rates of these instruments by the general public.
SUCCESSFUL INTERVENTION: RAISING AWARENESS OF ADVANCED CARE PLANNING (ACP) IN THE RURAL COMMUNITY SETTING
Authors: Weaver E , Vaughan T 
Published: April 2013

BackgroundIn 2009 in the Barossa Valley, South Australia, a group formed to promote the Respecting Patient Choices Program and ACP in their community. The group represents nurses, (aged and acute sites), doctors, lawyers, Ministers of Religion, Justices of the Peace, Emergency Services and community members.Location of documentsNumber surveyedAverage age% Male% Female% with ACPLawyers office (%)Doctors surgery (%)Local hospital (%)200925793664162525020101667465418110620118866226827.560321820127566257532442217AimTo determine if active promotion of ACP has improved awareness and acceptance in the communityMethodData collected over a 4 year period to determine public awareness of ACP in our local community. Information collected included age, gender, existing ACP documents and their storage location. At the end of the 4 year period data collected was analysed to determine if the pro-active approach had been effective in the above stated areas.ResultsOver 4 years the table shows a 100% increase of people with Advanced Care Plans. The unexpected positive outcome is the shift in awareness of ACP to younger age groups. Anecdotally people surveyed indicated an awareness of the Respecting Patient Choices branding and literature received through legal services, health services, medical centres and community avenues.DiscussionDirect contact with individuals has proven to be an effective way to promote community awareness and acceptance of ACP in the rural community.ConclusionData collected proves that active promotion of ACP with the community results in a positive change of attitude towards ACP—no longer a taboo subject.
THE ECONOMICS OF ADVANCE CARE PLANNING: EMPIRICAL DATA AND ETHICAL IMPLICATIONS
Authors: Marckmann G , in der Schmitten J 
Published: April 2013

BackgroundMost health care systems are under increasing financial pressure due to aging populations and medical innovations. Therefore, policy makers pay attention to the economic effects of patient care programmes. While advance care planning (ACP) programmes have shown to improve patient care, the evidence about their financial implications is still sketchy.AimTo assess the empirical information about the economic effects of ACP-programmes, discuss the ethical implications of the findings, and to outline an agenda for future research.MethodsSystematic review of the literature assessing the cost-implications (efficiency) of ACP programmes.ResultsPreliminary findings indicate that the costs for ACP-programmes may be outweighed by their savings; however, robust empirical research to understand the effects of ACP has not yet been undertaken, partly because of methodological challenges, and possibly also for political reasons.DiscussionThe cost-effectiveness of ACP-programmes is a delicate issue, both politically and ethically: If ACP-programmes are cost-saving, they would promote a wise use of scarce health care resources. However, a strong expectation of cost-savings could compromise the open and non-directive character of the facilitation process constitutive for ACP. We will discuss whether ACP programmes should adopt explicit conflict of interests policies. In any case, ACP-programmes must not be misconceived to be primarily an instrument for containing health care costs.ConclusionThere should be more systematic economic evaluation of ACP-programmes and an open discussion of the corresponding ethical implications. This will be necessary to deal openly with potential conflict of interests and prevent a political backlash against the ‘ACP-movement’.
GUIDELINES: ARE THEY A WASTE OF TIME?
Authors: Saul P 
Published: April 2013

BackgroundA trickle of guidelines about end of life (EOL) care in the 1990s has become a downpour. Governmental, professional, religious and community groups have released documents ranging from a friendly chat through to standards enforced by government agencies. In response to this deluge, clinicians everywhere have put up their umbrellas.MethodsEvidence for the effectiveness of guidelines is generally poor, and end of life guidance, based on expert opinion, broad in nature, and lacking implementation or audit strategies, fair badly. In addition, the term ‘end of life’ has no single definition, and no precise tests exist to define to whom EOL guidelines are meant to apply. As a case history, NSW Health has notched up over two decades' experience in writing EOL guidelines, and has attempted to publicise them. But it remains a reality that end of life guidelines can produce a weak justification for change, but cannot themselves produce that change.ConclusionImproving the management of dying in our institutions is crucial to the credibility of our health systems, and to stem the tide of support for euthanasia. And to achieve this we need a coherent approach with a hierarchy of needs: political will, community pressure, legal support, strategic policy, standard setting, audit, feedback and accountability. Failure to be proactive is sure to lead to pressure of all the wrong kinds, as economic imperatives come to drive urgent efficiencies in end of life care. But an important question remains outstanding: what kind of support do acute care clinicians want (or need?) Without a coherent answer to this empirical question, managing and sustaining change is likely to be beyond us.
HOW WELL DOES THE AUSTRALIAN HEALTH CARE SYSTEM SUPPORT QUALITY END-OF-LIFE CARE FOR PEOPLE WITH CHRONIC DISEASE?
Authors: Burgess T , Braunack-Mayer A , Crawford G , Beilby J 
Published: April 2013

BackgroundThere is mounting evidence end-of-life care for people with advanced chronic disease is neither adequate nor appropriate. Chronic disease management initiatives have focussed on prevention and systematic care processes, with little or no attention to end-of-life care planning or delivery.AimTo determine how the Australian health care system supports end-of-life care for people with advanced chronic disease and their carers and determine the suitability, availability and accessibility of care.MethodsUsing a qualitative case study methodology, nine people with end stage heart, renal and neurological disease identified as likely to be in the last year of life, were interviewed three times over 9 months. Their carers and key service providers were also interviewed.ResultsNone of the participants had discussed their prognosis with a clinician and none were supported by specialist palliative care. Participants aged under 65 years of age were more disadvantaged, particularly regarding access to ADL support. Four participants had undertaken advance care planning, at their own instigation. Service providers identified access to services, lack of advance care planning discussions and failure to recognise the terminal nature of many chronic diseases, as key issues.DiscussionLack of clarity around responsibility for care planning and co-ordination of end-of-life issues meant participants did not have the opportunity to discuss their care needs and frequently did not access appropriate services.ConclusionThe Australian health care system is compartmentalised, with a lack of coordinated, practical policy and service delivery responses acting as significant barriers to best practice end-of-life care
EXPANDED FAQS ON ADVANCE CARE PLANNING: DRIVEN BY THE COMMUNITY
Authors: Kelly C , Maloney M A , Smith L , Puls K , Spillane V , Sutton E , Silvester W 
Published: April 2013

BackgroundIn March 2011, Respecting Patient Choices at Austin Health established a Volunteers Program to provide education to community groups about Advance Care Planning (ACP). Commencing with 18 Frequently Asked Questions (FAQs), this expanded to 92.AimTo review the need for, the benefits and implications of expanded FAQs.MethodsThe FAQs at programme commencement were compared with the FAQs by December 2012. Volunteers were interviewed regarding the FAQ development.ResultsThe expansion of the FAQs was driven by consumer demand at Information Sessions; 18 broad questions were not satisfactory. The 92 questions (not all asked at each session) could be grouped into themes. Themes included: Role of the GP; Conflict; Competency; Legal Issues; Organ Donation; ACP in Critical situations; Euthanasia; Dying with Dignity, Religion and ACP. The attendee feedback regarding the sessions and questions was very positive; 94.2% of 309 attendees agreed/strongly agreed that their questions were answered; 96.8% agreed/strongly agreed that the presentation increased their ACP knowledge.DiscussionThe FAQs were expanded to meet community expectations about information provided at the sessions. The benefit of expanding this list was that new Volunteers would be aware of the type of questions that would be asked, and that consistent answers could be provided. The implication is that Volunteers providing information to community groups need to have detailed knowledge of the entire ACP process.ConclusionExpanded FAQs required very specific responses, provided greater satisfaction and meant that Volunteers needed high level knowledge of the ACP process.
ADVANCE CARE DIRECTIVES (ACDS): CONSISTENCY AND UNDERSTANDING OF PATIENTS' FUTURE MEDICAL TREATMENT PREFERENCES
Authors: Wallis K , Sellars M , Detering K , Whiteside K , Mawren D , Silvester W 
Published: April 2013

BackgroundACDs enable individuals to document future treatment preferences. Documented wishes need to be ‘clinically meaningful’ and able to inform medical treatment plans during acute hospitalisation.AimTo assess preferences indicated on ACDs for content, consistency within the document and concordance with medical orders on the Resuscitation Plan (RP) (hospital POLST form).MethodsRetrospective analysis of ACDs completed during facilitated advance care planning in 2011; including assessing consistency between the specific treatment wishes (CPR/Life-Prolonging Treatment (LPT)) and documented outcome preferences, and evaluating concordance of RP orders and ACD requests.Results153 patients completed ACDs, 88% also appointed a Substitute-Decision-Maker and 90% documented CPR/LPT preferences. Of these 51% chose ‘No CPR’, 40% chose ‘CPR if medically beneficial’ and 9% accepted medical advice that ‘CPR would be of no benefit’. 48% indicated they didn't want LPT, 50% wanted LPT if doctors anticipated a reasonable outcome and only 2% wanted LPT for as long as possible. 71% identified other undesired treatment(s) (38% ventilation, 37% artificial nutrition, 12% surgery, 10% dialysis). 84% documented their interpretation of unacceptable outcomes (inability to eat—38%, or communicate—43%, impaired cognition 33%, bedbound 33%).CPR and LPT requests were internally consistent in 88% and 85% of cases. A RP was completed during admission in 70 patients; 89% were concordant with ACD requests, 10% limited treatment more and 1% recommended more treatment.DiscussionMost patients clearly documented preferences and undesired outcomes that were interpretable into actionable medical orders which were followed.ConclusionFacilitated ACD completion ensures patients' wishes are known and respected.
TRANSFORMING ATTITUDES: A YOUTH INITIATIVE
Authors: Trimboli J , Anderson L , Rivere M 
Published: April 2013

BackgroundThis collaboration enable nine students in Year 11 and two teachers from Our Lady of Sion College to engage with our patients, their families and staff while exploring a number of topics.AimDebunking myths about death, dying and the meaning of Palliative Care.MethodsPatients and family members were interviewed to explore how they have come to understand how the clinical and non-clinical needs of their family members are met.ResultsStudent Victoria reflects on her experiences ‘I could use the clichéd phrase “it changed my life, but in all reality, it did so much more than that. I learnt that hospitals do not have to be places that are starch-white and unfriendly nor do doctors and nurses have to be people to fear. I learnt that courage is an intangible, amazing force that comes from the most unlikely people and places. I learnt that death does not have to be feared; especially not when it could be embraced. I learnt that it is possible for death, the end of someone's life, to be a celebration; a celebration of the life that has occurred rather than the death itself…Finally, I learnt to see past the physical or intellectual disabilities and see the person who is inside. The courageous, friendly, funny, intelligent, remarkable person that they truly are”.DiscussionThe students, their families and the school community have a new understanding of Palliative Care.ConclusionThis process can be taught to other health care providers—it will create changes in thinking in the community.
PATIENTS' WORDS INTO ACTION: OCCUPATIONAL THERAPY APPROACHES IN RAFIK HARIRI UNIVERSITY HOSPITAL LEBANON
Authors: Souraya Sally 
Published: April 2013

BackgroundThe first and unique occupational therapy service in Oncology in Lebanon has started in 2010 at the Rafic Harriri University Hospital. This service was the only psycho-social support provided for cancer patients at this hospital. Thus, many challenges were faced by the team working due to the novelty of this field and the lack of funding. Nevertheless, this service has succeeded in improving the quality of life of those patients and their families.AimThe presentation is going to highlight the challenges faced and the approaches used in order to put patients' words into action in individualised therapeutic plans.MethodsThe presentation will be addressing the main features of the service provided and highlighting how patients' words were used to develop therapeutic plans to help in improving the psychological state of cancer patients. Practical examples and case studies will be provided.ResultsThe presentation will show qualitative results of the impact of occupational therapy approaches used on the quality of life of cancer patients and their families.DiscussionThe presentation will discuss the importance of individualised therapeutic plan which were based on patients' needs and expectations. Moreover the unique effect of these plans will be highlighted due to the satisfaction attained by the patients regarding the quality of care given.ConclusionThe presentation will pose the following question: if the care planning is based on the needs voiced by patients' words, how can we effectively listen to cancer patients? And, How can we use this technique to improve the quality of care planning?
ADVANCE CARE PLANNING WHO, WHEN AND WHERE. WHAT IS THE EVIDANCE TO SUPPORT THE CALL TO PLAN EARLY
Authors: Sands M B , Norris C , Varndel W , Caplan G 
Published: April 2013

BackgroundEighty-six per cent of Australians state a preference to die peacefully at home, in fact only around 20% die at home. What is the evidence that supports our approach to Advance Care Planning? What populations can be effectively targeted? What are the necessary components that comprise and accompany an effective ACP? What are the barriers? What are the important outcomes? How do we provide confidence in the availability of careoutsidethe acute setting to permit the ideal of staff and families/carers following an ACP and avoiding crisis transfers? What is the role of the acute setting in ACP?AimTo review the evidence that supports a co-ordianated approach to ACP.MethodsThis presentation is a systematic review of the evidence that informs our approach to ACP in primary and secondary health care settingsResultsThe evidence to support a comprehensive, tailored approach to identifying patients who might benefit from ACP, an approach to symptom management and carer support in a primary health care setting with appropriate co-ordination with specialist palliative care will be presented.DiscussionOnly 4% of decedents do not have an the Emergency Department (ED) Presentation in the last year of life. The trajectory of chronic illness and co-morbidity determine that ED presentations provide the opportunity to identify patients who might benefit from ACP how can this inform our approach?ConclusionAdvance Care Planning has been associated with improved patient outcomes. The suggested approach supports the aspiration to Plan EARLY, and identifies appropriate target populations and outcome measures.