bluuebunny/crossref_metadata_2025_split huggingface dataset:
IS THERE AN IDEAL LEGAL FRAMEWORK FOR END OF LIFE DECISION-MAKING?
Authors: Menon S 
Published: April 2013

BackgroundThe law should help and not hinder patients, their loved ones and healthcare professionals in making advance care plans and end of life decisions.AimThis paper will review the relevant laws of England and Singapore, and compare their frameworks for end of life decision-making.MethodsThe advantages and disadvantages of each regime will be analysed in the context of three groups of patients and their loved ones facing an end of life scenario. The first group is patients who have capacity to make their own treatment decisions and have expressed their wishes. The second is patients who have lost capacity and did not make their wishes known, and the final group is patients who made their preferences known before they lost capacity.ResultsThere are some similarities between the English and Singapore frameworks but also some striking differences, especially relating to the powers of donees on healthcare decision-making and advance refusals of treatment.DiscussionGiven initiatives in advance care planning in England and Singapore, this paper will make recommendations on the elements of an ideal legal framework. England and Singapore do not have legislation pertaining to Physician Orders for Life Sustaining Treatment (POLST) or default surrogates. Are these aspects essential in an ideal legal framework for end of life decision-making?ConclusionThe ideal legal framework is one that empowers patients and their loved ones to plan for their future health care and enables health care professionals to honour those wishes at the appropriate time.
ADMISSION TO INTENSIVE CARE FOR PROVISION OF END OF LIFE CARE IN AUSTRALIA AND NEW ZEALAND: DO THE PATIENTS ALL DIE?
Authors: Melville A , Mitropoulos J , Philpott S J , Pilcher D V 
Published: April 2013

BackgroundCaring for those at the end of their lives is an increasing component of work for Intensive Care Units (ICUs). Limited research is available about patients specifically admitted to ICU with the aim of providing end of life care.AimTo define epidemiology of patients admitted to ICU for consideration of organ donation or palliative care and identify factors associated with outcome.MethodsRetrospective analysis of data from the Australian and New Zealand Intensive Care Society Adult Patient Database between 2007 and 2011.ResultsBetween 2007 and 2011, there were 1428 admissions to ICU for palliative care and 343 for consideration of organ donation (0.4% of the total 445 381 ICU admissions). Mortality was 87% and 93% respectively, compared with 9% in patients admitted for active management. 122 patients were discharged home alive. Median length of ICU stay was 17 h (IQR 6–39) in the palliative care group, 24 h (IQR 14–42) in the potential organ donation group, compared with 42 h (IQR 22–86) in patients admitted for active management. The most common diagnosis was intra-cerebral haemorrhage. A diagnosis of gastrointestinal cancer (OR 12.3, 95% CI 2.3 to 62.9, p=0.002) and planned admission following elective surgery (OR 4.3, 95% CI 2.6 to 7.2), p<0.001) were independently associated with being discharged home alive.DiscussionAdmission to ICU for palliative care or consideration of organ donation is uncommon and most patients die. Functional status of survivors remains unknown.ConclusionMore work is required to better identify patients who might survive, and assess needs and functional outcomes.
COMFORT CARE FOR A HEPATOCELLULAR CARCINOMA PATIENT IN HOSPICE WARD
Authors: Chen Y , Cheng S-F 
Published: April 2013

BackgroundCancer is the major cause of illness and mortality in Taiwan. It is noteworthy that the psychosocial and spiritual needs of patients with terminal cancer patients often are neglected by families and healthcare providers in Taiwan.AimThe purpose of this study was to apply the Comfort Theory to explore the experience on comfort care of a patient with terminal HCC near the end of life in hospice ward.MethodsData were collected and evaluated based on Kolcaba's theory of comfort. It directs nurses to assess physical, psycho-spiritual, sociocultural and environmental comfort needs of the patient; design holistic interventions to meet those needs; and measure the effectiveness of interventions to enhance the patient's comfort.ResultsFour contexts of a terminal hepatocellular carcinoma patient experience are as follows: (a) Physical: abdominal distention resulted from ascites deterioration. (b) Psycho-spiritual: Fear of death anxiety resulted from the uncertainty of life-threatening. (c) Sociocultural: Altered family process resulted from family worry and conceals the patient's condition. (d) Environmental: Un-homelike setting related to the limitation of hospital hardware.DiscussThe caring experience of this study provide important information to health professionals while caring terminal cancer patients based on their comfort needs. Health professionals could design an individualised care plan, establish a trusting relationship, control symptoms, provide complementary medicine, reconnect family relationship and create a homelike atmosphere to meet patients' needs.ConclusionThe study will help health professionals to perceive psychosocial and spiritual needs and properly provide support for terminal cancer patients.
ASSESSING PATIENT VALUES FIRST: CREATING A PLATFORM FOR ADVANCE CARE PLANNING (ACP) IN THE ADULT ONCOLOGY POPULATION
Authors: Mikan Sabrina , Taniguchi Cynthia , Harrison Deb , Hoverman Russell 
Published: April 2013

BackgroundPatients, families and health care providers can be apprehensive about having end-of-life (EOL) conversations in Oncology. However, asking patients about personal values regarding their healthcare goals creates a platform for more in depth conversations.AimTo test a structured process for identifying eligible patients for upstream advance care planning (ACP) conversations through development and validation of a quantitative instrument.MethodsRecruitment was conducted at seven cancer centres in the USOncology Network over a 90-day pilot study. A cross-sectional descriptive design was used in 301 metastatic cancer patients. Sixty-three participants completed the questionnaire. The 13-item instrument was created after a literature review regarding EOL choices and interventions using a 5-point Likert scale. Descriptive statistics were examined, in addition to analysis of the relationships between items using Pearson'srcorrelations.Results59% of participants were female, predominantly Caucasian, with a mean age of 66 years. 68% reported the importance of being told by their oncologist when dying. Additionally, 76% reported the importance of selecting who would make medical decisions for them. Lastly, 62% reported the importance of choosing where their EOL medical care occurs. There was a significant association between discussing feelings about dying and being told by a physician when dying, (r=0.373, p<0.01).Discussion and ConclusionThe instrument allows for healthcare providers to understand the patient's needs, creating a segue for patient collaboration during EOL care. ACP conversations can be further developed through review of the validated instrument in adults with life-limiting illness in Oncology.
HOME AS THE PREFERRED PLACE OF DEATH: ARE THERE LIMITATIONS?
Authors: Ganga-Krishnan S , Wong Lawrence , Song Angeline , Nah Tan Hui , Chung Irwin 
Published: April 2013

BackgroundThe HOME Programme provides home palliative services to patients with end-stage organ failure in Singapore.AimTo study the reasons for patients who were not able to fulfil their wish to die at home.MethodA retrospective study was done based on historical data gathered from case notes of patients who had died during the period of April 2011 to September 2012.ResultsA total of 143 patients had died. 102 patients (71%) had completed their ACP. Out of the 102 patients, 62 (61%) chose their homes as their preferred place of death.Out of the 62 patients who had chosen their homes as their preferred place of death, 41 patients (71%) died at home while 21 patients (29%) did not have their wish fulfilled.DiscussionFigure 1Cause and Effect DiagramConclusionSingapore has a multi-ethnic population. It's diverse cultural beliefs and perspectives towards palliative care and care-giving have an impact on end of life care decision-making.Currently, there is little research in this area. This paper has identified some causes to why patients were not able to fulfil their wish to die at home. It also navigates the way for future research to help patients die at home according to their wishes.
ADVANCE CARE PLANNING IN RESIDENTIAL CARE: 5 YEARS OF CONTINUOUS QUALITY IMPROVEMENT
Authors: Nicholes M , Billings S , Perta A , Melican G 
Published: April 2013

AimUntil recently Australia has lacked guidelines and practical examples from the field on best practice for implementing Advance Care Planning (ACP) in Residential Care Facilities (RCFs). In 2008 the Victorian Department of Health funded an ACP programme at Alfred Health. This presentation will detail our experience of 5 years of continuous quality improvement in ACP in RCFs.MethodsAlfred Health has three RCFs on site at Caulfield Hospital, which provides care to 120 permanent residents. Over the 5 year time period, initiatives were implemented in an effort to improve ACP processes and outcomes. These included: dedicated ACP staffing time in partnering with staff in RCFs, education and training of staff, development of documents, implementation of systems and procedures, engagement of GP's and the development of an auditing tool to measure change.ResultsPrior to the implementation of ACP in 2008, there were no obvious systems in place to support ACP. Documentation of resident end of life care wishes and NFR status were unclear and confusing for staff to follow. The 2012 audit of RCFs at Caulfield Hospital reveal that 89% of residents participated in ACP and 48% of residents have clear medical treatment plans which have been completed by the GP.ConclusionOur experience provides a successful example of how to implement quality improvement in ACP in RCFs over a realistic time frame with limited resources.
QUALITY OF LIFE AMONG END-OF-LIFE FORMER COMMERCIAL PLASMA DONORS INFECTED WITH HIV IN RURAL HENAN, CHINA
Authors: Sheng Y , Qiu Z , He Y , Zhang Y 
Published: April 2013

BackgroundChina has began providing antiretroviral therapy to people living with HIV/AIDS (PLWHA) since 2003.AimPurpose of present study was to investigate quality of life and happiness, as well as their needs in hospice care at their end-of-life among HIV-positive people in rural Henan.MethodsOne-hundred AIDS patients at their end-of –life were selected from Weishi, Zhenping and Tanghe counties, Henan province of middle China using convenience sampling. WHO Quality of Life for HIV (WHOQOL-HIV) BREF Chinese version was used to measure their quality of life, and Memorial University of Newfoundland Scale of Happiness (MUNSH) was used to measure their subjective welfare. Personal in-depth interview and focus group discussion were used to learn their needs for hospice care at end-of-life of the patients.ResultsOverall quality of life was moderate among the patients with an average score of 12.62 and SD of 1.97, higher in domains of spirituality, religion and personal belief (with an average score of 14.40±2.96) and psychological domain (13.58±2.06), and lower in independence (12.15±2.15) and environment (12.50±3.28) domains. Average MUNSH score was 21.00±6.20, with moderate range.Discussion and ConclusionPalliative care model used was beneficial to the patients. In-depth interviews indicated that Henan provincial government's policy of treatment and care for AIDS patients has had a beneficial impact on them at their end-of-life overall, although care component could be improved further by assisting their families as a whole.
MEETING THE PRIME MINISTER'S DEMENTIA CHALLENGE: IMPROVING CARE AND INCREASING ACP DISCUSSIONS FOR PEOPLE WITH DEMENTIA FOLLOWING THE GOLD STANDARDS FRAMEWORK (GSF) DEMENTIA CARE TRAINING PROGRAMME
Authors: Thomas K , Stobbart Rowlands M , Giles L 
Published: April 2013

BackgroundThe UK's Prime Minister's Dementia Challenge highlights the need to improve care for people with dementia. There is growing evidence that hospitalisation can often cause them harm, with increased mortality and morbidity. They can suffer increased disorientation and distress during hospital admissions, with over use of psychotropics and sedatives. However uptake of ACP discussions is often poor.AimTo improve end-of-life care and reduce hospitalisation for people with dementia through the GSF Dementia Care distance-learning training programme.The GSF Dementia Care Training interactive programme aims to:Increase awareness of dementia.Improve communication and Advance Care Planning/Best Interest discussions.Reduce inappropriate hospitalisation, with more dying in their usual place of residence.Improve pain managementMethodsThe pilot study involving 50 learners from different settings is currently underway, using the GSF Virtual Learning Zone. Certifications is supported by Stafford University.The evaluation includes recording number of ACPs undertaken, rate of hospitalisation, use of pain assessment tools and illustrative case histories. Evaluations are being analysed, with results available by May 2013ResultsIt is hoped that the training programme will show improvements in the areas noted, particularly increased ACP and reduced hospitalisation rates, enabling more to live and die at home.DiscussionThese findings are in line with the UK's PM Challenge in dementia.ConclusionWe hope to demonstrate the quantitative and qualitative improvements in care in increased uptake and implementation of ACP discussions in people with dementia.
PATIENT PREFERENCES AND ACTUAL TREATMENT IN OLDER PEOPLE AT THE END OF LIFE. A MORTALITY FOLLOW-BACK STUDY
Authors: Roeline H , Pasman W , Kaspers Pam J , Deeg Dorly J H , Onwuteaka-Philipsen Bregje D 
Published: April 2013

BackgroundRespecting patients' preferences is seen as good palliative care.AimStudying actual treatments in relation to preferences for starting or forgoing treatment of older people at the end of life.MethodsMortality follow-back study among relatives of deceased older people (2006–2009) of two cohorts representative for the older Dutch population (n=168) and for people with an advance directive (n=184). Preferences and actual treatment were studied for each of four treatments: starting or forgoing resuscitation, artificial nutrition/hydration, antibiotics, and artificial respiration.ResultsIn most patients who preferred receiving treatment this preference was followed (88% to 100% for different situations). In about half of the patients who preferred that a treatment would be forgone, the preference was followed (except artificial respiration: 12% concordance). The majority of people for whom no preference was known received treatment (59% to 79% for different situations). People with a known preference for receiving a specific treatment (as opposed to forgoing that treatment) had a higher chance of preference being followed (OR 7.4). People with a preference for forgoing a treatment had higher odds (OR 6.3), and people with a preference for starting a treatment had lower odds (OR 0.28) of treatment being forgone compared to people having no known preference.ConclusionsConcordance between preferred and actual treatment is high in older people who prefer treatment, and lower in people who prefer no treatment. Yet, making preferences for forgoing treatment known is useful as it increases the chance of treatments being forgone in those who wish so.
ENGAGING CONSUMERS: THE UNTAPPED DRIVERS OF CHANGE
Authors: Holman T , Brici N , McDonald D , Langdon T , Chea J 
Published: April 2013

BackgroundAdvance care planning appears such a sensible and logical process to assist in the approach to death but it has a relatively low uptake. Healthcare professionals have increased their consideration of decisions at end of life and now avenues to better engage the general community need broader discussion.AimA meta-analysis and primary research with Australian consumers were used to explore end of life considerations from the perspective of GPs, people in palliative care, consumers and carers. These studies investigated the role GPs play in initiating dialogue, the priorities of people experiencing palliative care and those yet to directly address death and how to assist in a better approach.Methods710 general consumers, 302 invited GPs, 692 people in palliative care and 936 bereaved carers were surveyed in 2012. Two focus groups further explored some of the issues raised.ResultsMost conversations about death are triggered by a significant decline in health. While GPs are comfortable with the discussion when prompted, less than 2% rate their training as being comprehensive. 52% of consumers do not have a written advance care plan but feel their wishes are known. Carers do not share the same level of understanding. The sharing of an open discussion is hampered by confusing and uncommon terminology and euphemisms.DiscussionThere is wide variation of attitudes and experience regarding death. Drivers of this situation are postulated and ideas to address better standards of care and the engagement of consumers earlier in their lives are explored.ConclusionGreater responsibility of planning for death by families and individuals can be encouraged by health professionals and community educators through appropriate engagement.
THE ROLE OF LAW IN ADVANCE CARE PLANNING: SHOULD IT LEAD, FOLLOW, OR GET OUT OF THE WAY?
Authors: Chesterman J 
Published: April 2013

BackgroundThis paper explores the tensions that exist between clinical advance care planning initiatives and the complex amalgam of laws that govern medical treatment decision making, particularly decision making in relation to patients who do not have the capacity to consent to their own treatment.AimThe aims of the paper are to identify the current challenges faced by advocates of advance care planning—from both clinical and legal perspectives—and to propose reforms.MethodsThe paper considers the current legal parameters in which advance care planning operates, and also considers some recent reform initiatives in Australia, including the adoption of a national framework for advance directives, as well as key recommendations arising from recent guardianship law reviews in Queensland and Victoria.ConclusionIn considering whether the law should lead, follow, or get out of the way, the paper concludes by suggesting that reforms are warranted that would enable it to do all three. It should lead, by ensuring the protection of vulnerable people. It should follow, by more meaningfully recognising current advance care planning initiatives and scholarship. And it should get out of the way, by reducing, and where possible eliminating, current unnecessary legal complexities.
A BROADER APPROACH TO LIMITATION OF MEDICAL TREATMENT: AUDIT OF COMPLIANCE AFTER CHANGING FROM ‘NFR’ TO ‘GOALS OF CARE’ IN AN ACUTE HOSPITAL
Authors: Thomas R , Ashby M 
Published: April 2013

BackgroundIn March 2010 ‘Not For Resuscitation’ (NFR) forms in the Royal Hobart Hospital (RHH) were replaced with a ‘Goals of Care’ (GOC) form that documents limitation of medical treatment in three categories: curative, palliative and terminal.AimTo assess the uptake and completion of the GOC form within the hospital, in particular, the sections of the form that were most likely to be filled out and by whom.MethodA ‘snapshot’ of all patients in the RHH on 6 September 2012 was obtained. 283 patient files were reviewed for a GOC form and the completed forms were evaluated. Any Advanced Care Planning (or similar) was noted and compared with the GOC form completed. The results were compared with a previous audit of the NFR form.ResultsOverall 52% of patients had a GOC form completed. Medical teams showed the greatest use of the GOC form with an uptake of 84%, compared with the NFR form at 34%. The documentation of the reason for limitation was completed in 27% of the cases.DiscussionThe GOC form has been well received within the hospital and is used more extensively than the previous ‘NFR’ form.ConclusionThe GOC form provides a documentation point for the overall treatment goals for the patient and is widely used by medical teams. Further improvements can be made with simplification of the form and education of non-medical specialties. It provides a clear medical decision-making framework for the deteriorating patient who is approaching the end of life.
ETHICAL CHALLENGES IN PROVIDING EOLC IN THE ICU
Authors: Truog R 
Published: April 2013

BackgroundTwenty per cent of Americans die using ICU services. Efforts to improve palliative care overall must therefore involve the ICU, yet the ICU presents many difficult ethical challenges not always found in other settings.AimTo review the ethical challenges of providing high quality palliative care in the ICU.MethodsClinical experience and review of the literatureResultsThree classical philosophical distinctions continue to resonate through end-of-life care in the ICU—the distinction between killing versus allowing-to-die, the distinction between withholding versus withdrawing treatments, and the distinction between hastening death as an intended versus merely foreseen side effect of administering analgesics and sedatives.DiscussionUsing cases from my experience and the literature, each of these distinctions will be explored in terms of modern ICU care. Specifically, I will discuss the role of non-invasive mechanical ventilation, along with the withdrawal of mechanical ventilation, cardiac pacemakers, tube feedings, and oral feedings. I will discuss various approaches to providing analgesia and sedation following the withdrawal of life support, including the use of unconventional agents (eg, propofol), unconventional doses, and the debate around the use of neuromuscular blocking agents in end of life care.ConclusionClassical philosophical dilemmas continue to generate ethical challenges to providing high quality end-of-life care in the ICU, and careful normative analysis can help to clarify the issues involved and guide practice.
FACILITATING ACCESS TO ACP AND AD EVIDENCE IN PALLIATIVE CARE
Authors: Tieman J , Rawlings D 
Published: April 2013

BackgroundAdvance care planning (ACP) and advance directives (AD) issues are significant for health professionals providing palliative care and those affected by the need for palliative care. For change to occur, existing and emerging evidence on ACP and AD needs to be accessible. While research-based evidence is being generated at ever faster rates, better infrastructure in the management of evidence-based knowledge is needed.AimTo facilitate access to evidence-based resources related to ACP and AD.MethodsCareSearch is funded by the Department of Health and Ageing to provide evidence-based information for the palliative care community. Content is created within a knowledge translation framework. This includes identifying intended users, searching and appraising relevant literature and online resources, writing and peer review of web pages, development of evidence tools including PubMed searches, and identification of relevant materials for inclusion in the CareSearch bibliographic databases.ResultsWeb metrics show the website's ACP and AD materials are being used with nearly 40 000 page views in 2012. Page views by type of resource were:Clinical Practice Pages: 10 173For Patients and Families: 9828RAC/GP/Nurses Hub: 12 915Finding Evidence: 5823DiscussionWeb-based resources can increase access and reach to the evidence base for ACP and AD. While access to evidence does not necessarily change practice, it is a necessary first step.ConclusionThe CareSearch website promotes evidence-based practice by facilitating access to the underlying evidence. Specific ACP and AD evidence resources and easy to read and download consumer information are available at http://www.caresearch.com.au