bluuebunny/crossref_metadata_2025_split huggingface dataset:
ESSENTIAL ADVANCE CARE PLANNING: DEACTIVATION OF IMPLANTABLE CARDIOVERTER DEFIBRILLATORS (ICDS) AT END OF LIFE
Authors: Reymond L , Israel F , Korczyk D 
Published: April 2013

BackgroundImplantable cardioverter defibrillators (ICDs) reduce mortality in patients with certain cardiac conditions and are widely used in contemporary cardiac care. Increasingly, patients with ICDs are referred to palliative care services for management either of cardiac conditions, related co-morbidities or unrelated diseases. An ICD can have the defibrillator component deactivated thus avoiding futile and painful electrical shocks to the dying patient. Developing a strategy to sensitively manage deactivation of ICDs is an essential component of contemporary end of life/advance care planning.AimTo develop a strategy to ensure timely defibrillator deactivation in palliative patients across all environments of care.MethodsFollowing a literature search concerning deactivation of ICDs, issues were explored in clinical meetings and workshop sessions. Stakeholders including cardiologists/electro-physiologists, specialist palliative care clinicians, general practitioners, lawyers, ethicists and patient liaison representatives drafted the strategy.ResultsThe strategy was endorsed by Queensland Health, documented as a Clinical Practice Guideline and disseminated. It includes components relating to patient/relative wishes and history taking, communication between stakeholders, clinical alert notifications, procedures for emergency deactivation of devices, consent and documentation processes. Magnets for emergency use are located in palliative care units and doctors' medical bags.DiscussionThis inclusive strategy has decreased the risk of futile shocks in palliative patients in part by emphasising a particular component of advance care planning. It has been used successfully in acute, community and residential aged care settings.ConclusionPalliative care services need to adapt to contemporary clinical advances and incorporate such advances into the patients' advance care plans.
ADVANCE CARE PLANNING IN MENTAL HEALTH: LEGAL ISSUES AND NEW DEVELOPMENTS
Authors: Weller P 
Published: April 2013

BackgroundAdvance Care Planning (ACP) in mental health raises a series of unique legal questions. Writing about ‘advance statements’ in Scotland, Jacqueline Atkinson identified them as the questions of nomenclature, capacity, content and legal status (Atkinson 2003). International comparisons of ACP in mental health shows that the broader human rights context in which mental health laws operate also influences the scope and interpretation of the key issues that underpin ACP practice.AimThe aim this paper is to indentify prominent legal issues in ACP in mental health in Australia in light of the growing impact of the Convention on the Rights of Persons with Disabilities (CRPD).MethodsThe analysis is based on the author's research as Post Doctoral Research Fellow and Deputy Director of the Centre for the Advancement of Law and Mental Health in the Faculty of Law at Monash University. This paper will discuss the four key issues by presenting an analysis on international and Australian jurisprudence with respect to the question of mandated housing and accommodation for people with mental health problems.DiscussionThis approach highlights recent developments in the law, shedding light on the relationship between compulsory mental health laws and the common law. It illustrates the emerging recognition in law that the preferences of the person have significance in care and treatment decisions, highlighting areas of law and practice that remain uncertain.ConclusionThe paper argues that ACP practice in mental health will be facilitated by practical research into the law and its effects.
MATURE MINORS AND REFUSAL OF MEDICAL TREATMENT
Authors: Tobin C 
Published: April 2013

BackgroundIn all Australian states, except South Australia, a minor is able to consent to treatment (provided he or she demonstrates a ‘sufficient understanding and intelligence to enable him or her to understand fully’ the proposed medical treatmenti) but not to refuse medical treatment. It has been argued that the law is inconsistent on this matter, that logic and consistency (as well as the modern understanding of the autonomy of the minor) would say that a minor who is sufficiently mature to consent to treatment should also be mature enough to refuse it, even if this causes the minor to die or suffer adverse consequences.AimAn analysis of whether Australian law should allow a minor to refuse medical treatment.MethodThe analysis of case law, legislation and academic opinion expressed in both legal and ethical journals.ResultsAs this is not an empirical study but a study of legal and ethical argument, the results are canvassed in the Discussion.DiscussionThis paper canvasses the arguments for and against the recognition of such a right. It argues that the refusal of medical treatment is not merely the converse of the right to consent to medical treatment: refusal requires a higher level of maturity, in particular an appreciation of the long-term consequences of a decision to refuse treatment.ConclusionThis study concludes that Australian law should not recognise a right of the mature minor to refuse medical treatment.
FAMILY CENTERED ADVANCE CARE PLANNING FOR TEENS WITH CANCER (FACE-TC): 3-MONTHS OUT: ADVANCE DIRECTIVES, PSYCHOLOGICAL ADJUSTMENT, AND QUALITY OF LIFE
Authors: Lyon M E , Jacobs S , Briggs L , Cheng Y I , Wang J 
Published: April 2013

BackgroundTeens with cancer want to talk about their goals/values for end-of-life care. Yet, advance care planning rarely occurs for them.AimTo pilot-test 3-month outcomes of the FACE-TC Advance Care Planning (ACP) intervention (n=17 dyads) versus Treatment As Usual (TAU) control (n=13 dyads) regarding advance directives, psychological adjustment, and quality of life.MethodsA 2-group, randomised, controlled trial in hospital-based inpatient/outpatient oncology units clinics from 2009–2012 with teens with cancer aged 14 to 21 years and their family (N=30 adolescent/family dyads). FACE-TC consist of three, weekly, 60 min sessions in a dyadic format with a trained/certified interviewer: (1) Lyon Advance Care Planning Survey©; (2) Respecting Choices Interview; (3) Five Wishes©.Three 60 min sessions were conducted 1 week apart. Three-month outcome measures were: advance directive; Beck Depression-II (BDI-II) and Anxiety Inventories (BAI); and Pediatric Quality of Life (Peds QL). Two teens did not complete follow-up (1 died, 1 host-graft disease), so 3-month analysis was with 28 dyads.ResultsAdolescents' mean age was 16; 60% male; 43% Black. Advance directives documented in medical record at 3-month follow-up were 100% for intervention teens, 0% for controls (16 vs 0, p<0.0001). Measures of anxiety, depression and quality of life at 3-month follow-up did not significantly differ between FACE-TC and TAU groups for teens or their families, controlling for corresponding baseline measures.Discussion/ConclusionThe FACE-TC dyads completed ACP without harm. FACE-TC was not inferior to TAU. Three-month follow-up was too short and sample size too small to determine if FACE-TC was beneficial.
AN AUDIT OF THE PREVALENCE AND CHARACTERISTICS OF ADVANCE CARE PLANNING FOR PATIENTS FROM RESIDENTIAL AGED CARE FACILITIES (RACFS) REFERRED TO THE MOBILE ASSESSMENT AND TREATMENT SERVICE (MATS)
Authors: Jafari B , Austin N , Lemke R , Poojary S 
Published: April 2013

BackgroundAdvance Care Planning (ACP) ensures recognition of a person's wishes and promotes autonomy, however, completion and implementation has been a challenge.AimTo assess the prevalence of ACP in patients from Residential Aged Care Facilities (RACFs) referred to the ‘Residential In-reach’ service of Alfred Health known as Mobile Assessment and Treatment Service (MATS), and to assess how the process of ACP has been approached by the mangers of those facilities.MethodsPart A: Prospective audit of documentation of ACP for 100 patients referred to MATSPart B: De-identified, paper-based surveys of the managers of the RACFs where the patients from part A of the study were residing.ResultsPart A: The prevalence of ACP, Medical Enduring Power Of Attorney and ‘Not for Resuscitation’ form were 38%, 37% and 35%, respectively. Patients with ACP or a separate ‘NFR’ form were significantly more likely to be living in high care compared to low care facilities (79% vs 21%, p=0.049 and 80% vs 20%, p=0.032, respectively).Part B: There was a significant inconsistency between the facilities with regards to ‘facility requirements’ for ACP, ‘person responsible’, ‘documentation’ and ‘GP involvement’.DiscussionThis study found a low prevalence of ACP, MEPOA and ‘NFR’ form in patients from RACFs referred to MATS. There was also lack of a systematic approach in the process of ACP.ConclusionThere is a need for structured policy coupled with appropriate funding as well as further education of both public and health professionals.
PATIENTS' RIGHTS IN INTENSIVE CARE UNITS
Authors: Kleanthous E 
Published: April 2013

BackgroundThe principle of patient autonomy is important in all European laws about Patients Rights. However, little research has been done investigating healthcare providers, relatives and patients' knowledge and attitudes regarding patients' rights. As far, almost none has been done investigating patients rights in intensive care units.AimA review of literature will be presented regarding knowledge and attitudes of healthcare providers, relatives and patients regarding patients' rights in intensive care units and especially the principle of autonomy in decision making process.MethodsFor this review CINAHL, Pubmed and Medline were searched under the keywords ‘patient rights’, ‘critically ill’ and ‘autonomy’, ‘decision-making’.ResultsPatient rights have been included in the research findings as a main issue in intensive care units among other important issues, such as decision-making, privacy and end of life care. Health care professionals must understand patients' and families' wishes and increase the communication in the intensive care units in order to provide patient autonomy and privacy.DiscussionIt was evident from the literature review that critically ill patients cannot actively participate in decisions about their health and treatment, but the health care professionals and families must respect them as human beings. Patient rights are fundamental for all the people in the hospitals.ConclusionFurther research is needed to determine the extent to which patients' rights are respected in intensive care units and in addition to examine the knowledge and attitudes of health care professionals and relatives regarding patients' rights of critically ill patients
UNDERSTANDING HOW CANCER PATIENTS ACTUALISE, RELINQUISH, AND REJECT ADVANCE CARE PLANNING: IMPLICATIONS FOR PRACTICE
Authors: Michael N , Stepanov N , Spruyt O , Pollard A , Clayton J , O'Callaghan C 
Published: April 2013

BackgroundAlthough advance care planning (ACP) is recognised as intégral to quality cancer care, it remains poorly integrated in many settings. Given cancer patients' unpredictable disease trajectories and equivocal treatment options, a disease specific ACP model may be necessary.AimsTo examine how Australian cancer patients consider ACP and inform the development of an Australian Cancer Centre's ACP programme.MethodsA constructivist research approach drawing on the Medical Research Council framework for complex interventions. Participants described their initial understanding of ACP, received ACP information, and finally completed a semi-structured interview assisted by the vignette technique. Qualitative inter-rater reliability was integrated.ResultsTwenty-nine patients from the lung and gastro-intestinal tumour streams were approached with 18 completing the study. Participants initially had scant knowledge of ACP. On obtaining further information, their responses indicated that: For cancer patients, ACP is an individualised, dynamic, and shared process characterised by myriad variations in choices to actualise, relinquish, and/or reject its individual components. Actualisation of each component involves considering, possibly conversing about, planning, and communicating a decision, usually iteratively. Reactions can change over time and are informed by values, memories, personalities, health perceptions, appreciation of prognoses, and trust or doubts in their substitute decision makers.Discussion/ConclusionFindings endorse the value of routinely, though sensitively discussing ACP with cancer patients at various times points across their disease trajectory. Nonetheless, ACP may also be relinquished or rejected and ongoing offers for ACP in some patients may be offensive to their value system.
PALLIATIVE CARE PRACTICE WITH HIV/AIDS
Authors: Nandaula Sarah 
Published: April 2013

Involvement of people living with HIV/AIDS in the continuum careIntroductionIn fulfilling the mission, hospice provides care package that includes holistic assessment counselling, medical care and also provides support in terms of antiretroviral therapy. Home based care, social support, nutrition support, capacity building and advocacy are also given by Hospice AfricaDescriptionGroup therapy composed of people living with HIV/AIDS and cancer and the entire gather around and sensitise the rest of patients still in denial land also educate the public on cancer and HIV/AIDS care, support and prevention through dancing, drama, making crafts and sharing life experience. Clients representatives, who are members of centre advisory committees and board of trustees, are involved in care of clients in the community. Palliative care is done by these clients reps in their communities and families are taught by home based teams and groups to families. Emotionally they are counselled spiritual support is also given and pain relief given by medical personnel. Clients are empowered to reveal their status by teaching them about disclosure both to family members and to their children. Families are advised to visit their patients frequently and encouraged them every day by telling them how much they have improved.Lessons LearntSupport structures are useful in proper management of palliative care—the family structures and relatives including counselling are necessary for palliative care. Nutritional support, spiritual support and pain managements very important in palliative care.RecommendationsPeople living with HIV/AIDS should always include palliative care in their role as caregivers. The best person to understand how it feels like to be very sick is the one who has been through the same situation so care structures should make use of these people.
ADVANCE CARE PLANNING IN JAPANESE NURSING HOMES-USEFULNESS OF END-OF-LIFE CARE TEAM
Authors: Nishikawa M , Yokoe Y , Kubokawa N , Fukuda K , Hattori H , Yong-Jae H , Miura H , Endo H , Nakashima K 
Published: April 2013

BackgroundAlthough advance care planning (ACP) in nursing homes is important, the best means of promoting it in Japan remains to be clarified.AimThe primary aim of this study, which was supported by trained ACP clinicians who are members of end-of-life care teams, was to clarify the usefulness of clinical strategies, such as a lecture about ACP and a multi-occupational interview regarding ACP in nursing homes. The secondary aim was to evaluate the quality of life (QOL) for families of residents who had died in nursing homes as per their wishes.MethodsOut of 108 families of nursing home residents, 59 participated in the lecture. Among the families of residents left the nursing home, we have conducted a multi-occupational interview with 14 families, and investigated the QOL for 13 bereaved families of residents who had died in nursing homes as per their wishes.ResultsOut of 14 families of nursing home residents who received a multi-occupational interview, 13 residents died in the nursing home in accordance with the patient' wishes. Intervention by clinical strategies significantly increased the number of residents dying in nursing homes as per their wishes (p<0.01). The QOL of the bereaved was maintained.DiscussionThe most important finding was that the residents' wishes were respected.ConclusionClinical strategies are more useful in promoting nursing home ACP.
IMPROVING THE ROUTINE UPTAKE OF ADVANCE CARE PLANNING (ACP) DISCUSSIONS IN MANY SETTINGS AS PART OF GSF TRAINING PROGRAMMES IN END OF LIFE CARE
Authors: Thomas K , Stobbart Rowlands Maggie , Giles L , Thorn M , Bloomer C 
Published: April 2013

BackgroundAdvance Care Planning is introduced as an integral part of The Gold Standards Framework (GSF) Training Programme in end-of-life care in the UK, in a variety of settings. GSF enables a systematic way to deliver the ‘right care, for the right person, in the right place at the right time’ and is extensively used across the UK (eg, over 2000 GSF-trained care homes).There is increased uptake of ACP, but is this the case in different settings?AimTo demonstrate change in end-of-life care in several settings including routine use of ACP discussions, as part of the GSF Training and Accreditation programmes, These include:-Care homes (ACF)Primary careAcute hospitalsDomiciliary careCommunity hospitalsTo describe increase ACP in GSF care homes.MethodsEvaluation findings following GSF training in End of life care and Accreditation in five settings are described, with illustrations and quantitative and qualitative examples.ResultsIncreased uptake of ACP discussions was enabled in all settings, with comparative results described. Particularly high results (over 95%) were from care homes, where the GSF Accreditation standard is that “every resident is offered an ACP discussion.”DiscussionUse of training to increase staff confidence, competence and organisation of care can be used extensively across many settings to support better relationships with patients near the end of life, enabling more ACP discussions, leading to better quality end of life careConclusionRoutine staff training in EOLC and assessment/accreditation of organisations leads to widespread improvements in care.
TALKING ABOUT END OF LIFE: MARKETING ADVANCE CARE PLANNING TO RESIDENTIAL AGED CARE FACILITIES
Authors: Piercy J , Walker H , Prior T , Buchanan G , Greeve Kim 
Published: April 2013

BackgroundOf the 143 932 Australians who die each year, 10% die in residential aged care facilities (RACFs). 25% of these deaths occur within 6 months of admission. Frequently residents are transferred to hospital at the end of life.AimTo assist RACF staff toidentify residents with irreversible deteriorating conditions.facilitate case conferences to record resident's and family's wishesrecord advanced care plans (ACPs)respond to and enact ACPs.MethodsThe Talking about end of life programme was branded and marketed to RACFs resulting in an inundation of registrants. To translate theory to practice, training was delivered to link teams from each RACF. Tailored mentoring encouraged ACP, team building, ongoing education and death reviews. Pre and post intervention surveys revealed ACP practices.ResultsProject results include increased numbers of ACPs and less residents transferred to hospital to die. Enablers and barriers to success were identified. Where ACPs were developed, staff experienced increased satisfaction in caring for residents in the terminal phase.DiscussionThe need and desire for training in ACP and care of the dying within RACFs was evident by the overwhelming response. Willingness of general practitioners to discuss end of life issues was pivotal to success. Risks included sustaining the trained workforce and supportive systems. Direct benefits of ACP to residents and families needs further exploration.ConclusionThe programme's marketing strategy was successful. Training alone is not enough, a systems approach to modifying and improving practice is essential to ACPs becoming routine practice in RACFs.
KNOWLEDGE AND ATTITUDES ABOUT ADVANCE CARE PLANNING AMONGST AN OLDER ADULT POPULATION LIVING IN SOUTH EAST QUEENSLAND
Authors: Crowe L , Boddy J , Chenoweth L 
Published: April 2013

BackgroundThe introduction of Advance Care Planning (ACP) in the hospital context when people are ‘vulnerable and unwell’ is challenging. The ‘Creating pathways to advance care planning: empowering the health consumer’ research and education project explored the knowledge base of people aged 60 years and over living in the community. Current knowledge on ACP and associated terms and legislation prior and post to a community education programme were investigated.AimTo understand and improve the knowledge and attitudes of people over the age of 60 years to ACP in South East Queensland.MethodsEmploying intervention and control groups n=150 people participated in community education. Both groups completed a pre-questionnaire to ascertain their knowledge base on ACP. Participants then engaged in an interactive training programme on ACP. Post questionnaires were completed following the education and 4–6 months after the training.ResultsWhile the majority of participants were familiar with terms related to ACP most were not able to articulate what the terms meant. Participants were confused by the paperwork with many hoping their relatives or doctors would ‘work it out for them’. Participants found the education empowering with many engaging in formal and informal ACP following the workshops.DiscussionDespite growing awareness of ACP, medical terminology and legislative requirements continue to be misunderstood. Although wanting to remain independent, participants perceived that there were too many barriers to engaging in ACP prior to engagement in the training.ConclusionACP continues to be confusing and overwhelming to people over the age of 60 years living in the community and there is a significant role for community education.
ADVANCE CARE PLANNING AND THE LAW: UNINTENDED BARRIERS
Authors: Cartwright C , Brownie S 
Published: April 2013

BackgroundUnder the Australian Constitution, each state/territory of Australia has responsibility for developing its own health law. Over the last 25 years, Advance Care Planning legislation in Australia has developed at a different rate, and with different emphasis, in each state/territory, resulting in different legislation, documentation and terminology in each state/territory. While there is some support for more national consistency, it is important to understand the current legislative provisions and the often unintended barriers to some aspects of ACP created by the law in various jurisdictions.AimThe aim of this project was to compare legislation across each state/territory, to support two national information seminar series across Australia in 2011 and 2012.MethodsACP legislation was examined and compared for each state/territory. As part of the seminar series, stakeholders in each state/territory were asked to alert the presenter if their understanding of their legislation was different to what was presented. When this happened, the presenter subsequently clarified the issue.ResultsIssues were identified in most states/territories that could be disincentives to effective ACP.DiscussionProblems identified included incorrect assumptions in NSW and Tasmania that Advance Directives were not legally binding; confusion in NSW about the authority of the Person Responsible to refuse life-sustaining treatment; and inherent problems in South Australia resulting from there being no order of authority for substitute decision-makers.ConclusionEnsuring individual wishes/directions for future health care/medical treatment are respected requires that problems with state/territory legislation be addressed as a matter of urgency.