bluuebunny/crossref_metadata_2025_split huggingface dataset:
CPR: STAT! OR STOP! THE END-OF-LIFE CARE ELECTRONIC RECORD (ELCER)
Authors: Varndell W , Mackenzie J , Sands M B 
Published: April 2013

BackgroundAdvance Care Planning is about much more than CPR and the aspiration to support care planning and symptom management to improve care at the end-of-life; empowering and supporting patients in deciding upon what care they wish to receive at the end-of-life, is not controversial. The legal and ethical imperative to abstain from needlessly causing harm and distress from medical intervention is also well established. The real-time availability of an Advance Care Plan in which clinicians and administrators can rightly place their confidence has been more elusive.AimTo review the evidence supporting the use of a universal electronic health record such as eHealth (National Electronic Health Transition Authority) for the documentation and communication of ACPs.MethodsA systematic review of the evidence to support the use of electronic health records in ACP will be presented.ResultsEvidence-based and generalisable approach to documentation and communication of ACP will be presented.DiscussionBarriers, risks and benefits will be discussed.ConclusionAdvance Care Planning is vital to medically defensible, rational, compassionate and patient centred care at the end of life. The Australian eHealth platform provides an opportunity to achieve this across primary, secondary, rural, regional and metropolitan healthcare settings.
ENGAGEMENT IN ADVANCE CARE PLANNING: DO REGION-WIDE INTERVENTIONS WORK?
Authors: Tayler C , Hanvey L , Teixeira A A , Barwich D , Baxter S , Heyland D K 
Published: April 2013

BackgroundPrior research suggests that only a small percentage of the general population is involved in ACP.AimTo compare engagement in ACP among the general population of Canadian adults with the engagement among adults in a health authority with a region-wide ACP engagement initiative (Fraser Health (FH), British Columbia).MethodsAn on-line opinion poll of a nationally representative sample of 1523 respondents including five questions regarding core ACP activities. Pearson χ2tests were used to compare the prevalence of ACP in FH and the rest of Canada.ResultsCompared to the rest of Canada, respondents from FH had higher levels of ACP awareness (20% against 15%, p=0.025) and higher rates of ACP discussions with family and friends (59% against 51%, p=0.004). However, they had lower rates of written ACPs (15% against 20%, p=0.018).DiscussionThe population of adults in FH tend to talk more with their family and friends about ACP than do adults in the rest of Canada. The fact that a lower number of respondents had written ACPs in FH could be explained by the fact that while FH had engaged professionals and the public around ACP, legislation supporting ACP was only recently declared.ConclusionEngagement with the public by a health authority makes a difference in the levels of ACP awareness and discussions with family and friends. However, regulatory frames need to be in place in order to provide optimal support to ACP interventions.
DOES LAW HAVE A ROLE TO PLAY IN ADVANCE CARE PLANNING?
Authors: White B P 
Published: April 2013

BackgroundThe role of law in end of life care is vexed. Legal risk (or perceptions of it) can impede good end of life care through defensive medicine, and legal processes can be slow to respond to clinical need. Some also argue that legal considerations are not part of clinical decision-making at the end of life. Yet an integral part of the regulatory framework on which advance care planning is based is at least partly sourced in law.AimTo consider how law can support advance care planning and end of life care.DiscussionAlthough there are clear limits on what law can achieve, there are good reasons to co-opt law into advance care planning in a deliberate and structured way. Principled reasons include that law is a reflection of community values. More pragmatic considerations include that the involvement of law cannot be avoided as part of advance care planning and end of life care.ConclusionIf a role for law is inevitable in advance care planning and end of life care, we should acknowledge this and grapple with it squarely. This requires end of life policies to include legal considerations and accurately represent them, and for clinicians to be supported to know and navigate the law. Where law fails to support good end of life care, this should be addressed directly and the law reformed. Ongoing dialogue between health and legal professionals to achieve this is needed.
DECIDING FOR OTHERS: A CLINICIAN'S VIEW
Authors: Saul P 
Published: April 2013

BackgroundThe majority of people in Australia die in acute care. Up to 95% of them will lack capacity to make treatment decisions at the end of life, and these decisions will be made by uninformed family members and caring strangers.MethodsBut what do we know about deciding for others? Two sources of knowledge come to mind—empirical evidence from surveys and other scientific investigations, and philosophical explorations of advance statements, substituted judgments and best interests. The empirical evidence suggests that people differ considerably in the extent to which they wish to decide for others, that they are skeptical about the medical information they are given, that they have a low awareness of the likely preferences of the person they are deciding for, and that they do not accept the hierarchies of the various legal provisions. In legal terms, then, deciding for others rests on somewhat uncertain ground, especially when the decision to be made is about the end of life.DiscussionLegislation about deciding for others at EOL has a number of functions—principally (and wholly in the case of NSW) to protect the vulnerable. Other functions: providing standardised forms as evidence of prior wishes, indemnifying doctors who follow these wishes, and providing some guidance about best interests decisions, are variably included in different jurisdictions.ConclusionBut what do clinicians want? I would suggest: recognition of the need to make EOL decisions on behalf of others, of the need to protect vulnerable people from reckless overtreatment as well as undertreatment, clarification of the role of the family, regular review, transparency of decisions in tribunals, a process for establishing the validity of directives, and harmony with adjacent jurisdictions. This paper reviews current efforts from the UK and Australia, and suggests some lobbying may be required.
EXAMINING ADVANCE CARE DIRECTIVE (ACD) LAW AND POLICY FRAMEWORK FUNCTIONALITY IN THE CONTEXT OF NURSES AND AMBULANCE OFFICES/PARAMEDICS ADHERENCE TO ACD CPR REFUSALS
Authors: Seal M 
Published: April 2013

BackgroundAustralian States and Territories are called to align ACD legislation with common law principles. However, little is known about the functionality of different ACD frameworks when Nurses or Ambulance Officers/Paramedics attend a situation when an ACD CPR refusal might apply.AimTo construct a working picture of the different ACD legislative and policy frameworks currently operating in Australia and other countries under Westminster systems.MethodsAn ACD law, policy and outcome table was constructed summarising each jurisdictions' ACD operational parameters, who is authorised to implement ACD, and any ACD adherence research.ResultsACD operation parameters varied from: requiring a medical condition to which the refusal related; only applying in the terminal phase, to any period of incapacity nominated by the person as under common law. Policy examples under prescriptive law usually authorised all health professionals could implement ACD. Under permissive law, even with policy support, a preference for community `Not-For-CPR' medical orders was evident. There was little empirical research about ACD adherence in the context under examination.DiscussionLegislative and policy framework affects ACD scope and delivery. Most with broad ACD application parameters also used community `Not-For-CPR' orders, reverting to medical oversight. Others appeared effective in delivery but excluded some people from making ACD.ConclusionThe table illustrated a large variation between jurisdictions and that research is needed to determine whether there is a relationship between adherence to ACD CPR refusals and the type of ACD framework. This knowledge could help optimise ACD adherence and application across all settings.
TO MET OR NOT TO MET: THAT IS THE QUESTION!
Authors: Sulistio M , Vo A , Franco M 
Published: April 2013

BackgroundThe Medical Emergency Team (MET) aim to identify clinically deteriorating patients to provide early intervention and prevent negative outcomes. However, for a proportion of these patients (ie, patients who are expectedly dying) continued intervention is ‘medically futile’ and unwanted by the patient and/or next-of-kin. Although diagnosing dying can be complex and challenging, it is an important step to establish appropriate goal of care, avoid futile medical intervention and allow a ‘good death’.Expectedly dying$Not expected to dieGOC#changedGOC#unchangedIncidents (patients)AH^(%)▸ Multiple/admit (%)47 (38)31 (66%)22 (47%)409 (318)241 (59%)161 (39%)104 (95)60 (58%)42 (40%)352 (282)212 (60%)141 (40%)DemographicsAge (Range)Male%▸ From HLC%*72.05 (28–96)50%18%66.7 (18–95)56%5.3%76.9 (31–96)61%19%64.7 (18–96)51%4%Admission (%)Medical▸ AH^70%61%66%54%77%55%63%54%Life-limiting illness (%)Malignant▸ Non-malignant21%47%13%31%25%49%10.8%33%Outcome (%)Death▸ Altered SOC&74%2.6%20%25.5%53%25%19%13.8%$Patients with 2 out of 4 clinical observations prior to incident (taking sips of fluid only, unable to swallow medications, bed-bound, semi-comatose)#Goal of care ^After hours (weekend/public holiday and weekday outside of 0800–1700 h) *High level care&Site of Care (rehabilitation, residential care facility or inter-hospital transfer).AimTo determine the incidence of MET or Code Blues on patients who were expectedly dying.To identify patient's, clinician's or institution's variables that result in the occurrence of such incidentsMethodsRetrospective 3 months audit of MET and code blue occurring on all Southern Health inpatients with onsite access to ICU support (Monash Medical Centre Clayton, Jessie McPherson Private Hospital, and Dandenong Hospital). Medical records were reviewed to collect patient demographics, admission and incident details, existing life limiting diagnosis, resuscitation and limitation of medical therapy status, clinical observations that may suggest terminal phase$, and documentation of communication with patient's next-of-kin.ResultsA total of 456 incidents on 351 adult patients are analysed.ConclusionA significant proportion of MET (10%) in a major hospital network may have been avoided if dying patients were better identified and the documentation of the goals of care was clearer. More such incidents occurred out of business hours than within hours. These results should encourage prospective study into what further measures could reduce this proportion of incidents.
THE REUNIFICATION EXPECTATIONS OF ESTRANGED ELDERS TOWARDS THE END OF LIFE
Authors: Agllias K 
Published: April 2013

BackgroundIntergenerational estrangement is not uncommon in later life families. While the response to estrangement can range from relief to devastation, many older people feel a need to ‘make things right’ before their death.AimTo examine the experience of parents estranged from at least one adult child in later life, with a focus on preparations for end of life and reunification expectations.MethodsThis paper reports primarily on a qualitative study conducted between 2009 and 2010—which utilised two in-depth interviews and diaries—with 25 older people estranged from at least one adult child.ResultsThe majority of participants described a desire to reunify before end of life. Indeed, later life events such as illness, the death of a friend, or one's own impending death often triggered an intense need to attend to wills, determine legacy items, write letters and maybe even reunify with an estranged child. While participants expected their estranged child to come to their bedside if they—or their spouse—became critically ill, their actual experiences of this eventuality were mostly of non-reunification and a significant grief response ensued.DiscussionThe ambiguous nature of intergenerational estrangement and its social disenfranchisement often intensifies the grief and loss associated with it. Later life is a period when ‘making sense’ or ‘meaning’ of estrangement can be particularly pertinent.ConclusionThis study suggests a significant role for allied health and human service workers in the preparation of estranged older people for the end of life regardless of reunification possibilities.
THE SAFETY AND QUALITY OF END OF LIFE CARE IN AUSTRALIAN ACUTE HEALTH SERVICES: A REPORT ON PRELIMINARY CONSULTATION INTERVIEWS WITH CONSUMERS, CLINICIANS, HOSPITAL EXECUTIVES AND GOVERNMENT POLICY-MAKERS
Authors: Hill J , Dunbar N 
Published: April 2013

BackgroundDuring the course of the Commission's work on recognising and responding to clinical deterioration, it became clear that people who are dying in acute health services do not always receive appropriate end of life care. To scope the issues and identify where the Commission might contribute to improving the quality and safety of end of life care in acute health services, preliminary consultation was carried out.AimThe primary aims of the preliminary consultation were to identify and explore issues that affect the safety and quality of end of life and terminal care in acute health services in Australia and identify current approaches to improvement.MethodsA series of focus group and individual interviews were conducted with consumers, clinicians, hospital executives and policy makers at state and commonwealth level.ResultsThemes emerging from consultation interviews include: poor recognition of dying by clinicians, and a subsequent lack of timely and appropriate decision-making; ambiguity in the meaning assigned to terms describing end of life, palliative and terminal care; fears held by clinicians; difficulty talking about dying; tensions between paternalistic models of care and patient autonomy; and the absence of pathways for escalating concerns regarding end of life care for patients dying in hospital.DiscussionThe quality and safety of end of life care in Australian acute health services is variable and frequently sub-optimal because of multiple complex and interlinked individual and systemic factors.ConclusionA formal consultation paper is being developed to test the findings and recommendations of the preliminary consultation more broadly.
LIVING WELL DYING WELL: PUTTING THESE WORDS INTO ACTION
Authors: Larpent Andrew , Davidson-Park B , McCallum S , Price K , Evans D , Ullrich S , Williamson P 
Published: April 2013

BackgroundProviding quality end of life care in residential aged care (RAC) is influenced by multiple drivers including the workforce to deliver care. Older Australians rank palliative care and dying with dignity as major issues requiring future aged care workforce reform.AimThis presentation will outline the new workforce model to be developed through theLiving Well Dying Wellproject. Key objectives and examples of case studies will illustrate how:To implement a targeted education programme that focuses on all staff at Southern Cross Care.To create a better workforce balance.To harness a cultural shift amongst all involved to establish a partnership approach.To build leadership for change and sustainability of the new workforce model.To provide quality end of life care in RAC.MethodsOutcome Mapping is being used as a change management tool and a developmental evaluation methodology to assist Southern Cross Care to successfully implement theLiving Well Dying Wellproject. It ensures a logical, participatory and reflective set of steps so as to address the complexity of the project in the context of RAC.ResultsThe project is currently in development stage therefore this presentation will focus on the change management process, the ‘End of Life’ model of service delivery that is underpinning the workforce reform and challenges along the way.DiscussionThe project is possible due to funding by Health Workforce Australia. It is ensuring positive and open attitudes towards death and dying to enable all residents and their families the choice and dignity that is integral to living well and dying well in RAC.ConclusionAt Southern Cross Care we are thinking more systematically and pragmatically about how our workforce provide advance care planning and end of life care. We are already translating our thinking about how to do it, to bring about the desired outcomes, into action.
EMBEDDING ADVANCE CARE PLANNING (ACP) BEST PRACTICES IN LONG TERM CARE FACILITIES (LTC): GIVING ACP ITS BEST CHANCE
Authors: Iversen S , Berg B , Simon J 
Published: April 2013

BackgroundLTC residents frequently have cognitive impairment, are at risk of intercurrent illnesses and being unable to express their preferences when medical decisions need to be made. Consequently, ACP in LTC often requires staff and family participating with/on behalf of the resident makingadvancedecisions about intent of care and use of hospital services should a sudden deterioration arise. It is not known how best to embed such ACP in the fabric of LTC delivery.AimTo use an Inquiry to Action project, including patient/family survey, to describe the strengths and challenges of ACP in LTC and inform best practices for embedding ACP in LTCMethodsUsing a quality improvement initiative ‘Inquiry to Action’ akin to the qualitative Action Research, a nurse educator sought to understand how ACP occurs in three urban LTC and to develop a plan of action to improve the quality and frequency of LTC ACP communication. In addition we adapted and piloted a validated survey from acute care (ACCEPT), to collect perspectives on ACP of residents and their family.ResultsThe commitment to ACP from facility leaders and staff varied with local context. We will describe facility strategies and work flow processes that family, residents and staff reported as facilitative or challenging to ACP.ConclusionAn implementation framework, adaptable to local context, was created of best practice suggestions related to organisational and business processes, resident and family member engagement, ongoing staff education and continuous quality improvement.
IMPLEMENTING A NATIONAL ADVANCE CARE PLANNING (ACP) PROGRAMME IN SINGAPORE
Authors: Chung I , Wong C , Oh C , Ho S Y 
Published: April 2013

BackgroundSince its inception in 2011, ACP has steadily gained traction among healthcare providers in rapidly ageing Singapore. Efforts to implement ACP, beginning with public hospitals, are spearheaded by a National ACP Steering Committee, in collaboration with service providers and government agencies. However public awareness remains low. This poster examines the key thrusts, outcomes, and challenges in assimilating ACP in our system of care.AimTo share Singapore's experience in implementing ACP nationally, with considerations such as its diverse cultural and ethnic composition, family structures that tend to place familial harmony over autonomy, and lack of communication on end of life matters.MethodsACP is implemented along 3 thrusts: (i) Increasing ACP awareness among healthcare professionals, community and religious leaders, and the public; (ii) Training more ACP facilitators in health and social care organisations to assist with ACP conversations; and (iii) Building and strengthening systems to support ACP implementation, including a national ACP IT system.ResultsOver 450 facilitators have been trained. Pilots are on-going in five public hospitals, in departments such as Palliative Medicine, Cardiology, Oncology and Respiratory Medicine.DiscussionWith plans to improve health and social support for aged persons in the community, greater emphasis must be placed on developing ACP services among providers of intermediate and long-term care. Community engagement, media advocacy and publicity also need to be in place to raise awareness and normalise conversations in care planning.ConclusionIn tandem with the growth of ACP at acute and community settings, greater engagement and empowerment of providers and the public must also happen.
PRACTICE OF CONSULTATION FOR ADVANCE DIRECTIVES IN GERMANY: A PILOT STUDY OF CONSULTANTS TRAINED BY A BAVARIAN HOSPICE ACADEMY
Authors: Petri S , Marckmann G 
Published: April 2013

BackgroundApart from the pilot projectbeizeiten begleiten, Advance Care Planning (ACP) programmes are still not widely implemeted in Germany. There is, however, an increasing number of organisations and individuals offering consultation for advance directives (ADs). So far, there is hardly any knowledge about their consulting profile and thereby the quality of ACP in Germany.AimTo assess the current status of organisation, actual practice and possible improvement of AD-consultation in Germany and thereby the need for structured ACP-programmes.MethodsA pilot study using a written questionnaire (Likert-Scale) completed by 33 consultants participating in a follow-up meeting of a Bavarian Hospice Academy.ResultsA typical consultation is initated by the consulted individual himself, often by family or friends, rarely by stationary facilities. It takes between 60–90 min (73%) and includes one meeting (61%). The age of the consults is predominately between 61–80 years. 27% of the participants have no or rarely knowledge about the health status of the consults. 97% use the same form for AD (Bavarian State Ministery of Justice), 100% inform about a proper custody. 91% suggest to invite a person of trust and report positive experiences of such an involvement. They never or rarely (64%) exchange with other care providers.DiscussionThe results of this pilot study show that these current AD consultation practices do not yet fully meet the quality criteria of international ACP-programmes (eg, initiate conversations, ACP process with several meetings, planning with health care provider).ConclusionIt underlines the need for more comprehensive ACP-programmes.
AN EXPLORATORY STUDY ON THE VIEWS OF CANCER PATIENTS' INFORMAL CAREGIVERS ABOUT ADVANCE CARE PLANNING
Authors: Michael N , Hiscock N , Baird A , O'Callaghan C 
Published: April 2013

BackgroundIn oncology, informal caregivers often partake in patient-medical consultations and treatment decision making, yet little is known about their views on advance care planning (ACP). Understanding what caregivers want to communicate with cancer patients and health workers, regarding advance care wishes and goals, may complement and potentially further advance the development of an appropriate ACP framework in an integrative cancer centre.AimTo understand caregivers' perspectives about ACP in relation to potential limitations, barriers, and facilitators of communication that may exist between patients and themselves.MethodsConstructivist approach with grounded theory design. Participants participated in either focus groups (13) or semi-structured interviews (5), assisted by the vignette technique. Qualitative inter-rater reliability was integrated.ResultsEighteen caregivers (13 female; mean 49.1 years) of 17 patients from lung (5) and gastro-intestinal (12) tumour streams participated. 24 declined participation. Caregivers' difficulties in approaching ACP can relate to information access, mismatched desires with patients for conversations, competing care roles, and its confrontational nature. Caregivers may also have a role in supporting patients through careful initiation of discussions and/or their own ‘provisional ACPs’. Many participants requested caregiver specific ACP information and recommended support to help them assist patients with ACP, or their caring when patients decline ACP.DiscussionCaregivers can be conduits through which hospitals can assist oncology patients to approach ACP.ConclusionThis study supports development of an ACP framework which recognises opportunities for caregiver involvement through providing information and support which helps them to sensitively initiate ACP discussions with patients.