bluuebunny/crossref_metadata_2025_split huggingface dataset:
Advance care planning for GLBTI people: results of a state-wide survey
Authors: Cartwright C 
Published: May 2011

BackgroundIncreasing evidence suggests that many gay, lesbian, bisexual, transgender and intersex (GLBTI) people are being denied their legal rights at the end-of-life. A 2009 study in Northern NSW (presented 2010 ACPEL Conference) found evidence of active discrimination and abuse of GLBTI people.MethodsA State-wide hard copy and on-line survey and in-depth interviews were undertaken.Results305 useable questionnaires were returned; questionnaire distribution was via Newsletter & websites so a response rate could not be determined.The majority of respondents were open to all significant others; just over half were in a relationship; 77% had been in their relationship for 4 years or more.Most respondents had high levels of education and income above that of the general population. Only 21% rated their health as Fair or Poor, while 53% said it was excellent or very good.Knowledge of/Experience with advance care planning (ACP) options was variable; most respondents did not understand the law relating to ACP. Few had discussed their end-of-life wishes with their doctor or significant others.Those who were not out to significant others, had lower education and income and poorer health, are at greatest risk of inadequate care and not having their end of life wishes respected.ConclusionsAs many GLBTI people are ageing, there is an urgent need for focussed education for GLBTI people about legally available ACP options and resources. Findings from this study and the pilot have resulted in a new GLBTI-specific ACP resource booklet.FundingStudy funded by Law and Justice Foundation of NSW.
Can advance care planing offer an alternative to people contemplating euthanasia?
Authors: Fullam R , Hancock A , Detering K , Davies J , Silvester W 
Published: May 2011

BackgroundMany patients with terminal illness and progressive loss of control over their bodies explore the option of euthanasia as a means to regain control. Some of these patients are referred by health professionals for advance care planning (ACP). This case study illustrates the difficulties involved.Case summaryMH had advanced Multi System Atrophy, a terminal disease involving progressive paralysis and pain and was being cared for at a nursing home. At the time of referral to the Respecting Patient Choices (RPC) Program, she was actively seeking advice from voluntary euthanasia organisations, and was exhibiting increasingly severe symptoms of depression as her disease progressed. The psychiatric liaison service viewed the initiation of involuntary treatment as inappropriate in this context. At this point a referral to the RPC program was made. ACP was conducted with MH, and she and her family completed an ACP including the appointment of a substitute decision maker, and the completion of a refusal of treatment certificate. MH was subsequently admitted to a specialist palliative care unit, where she died shortly after admission.DiscussionThis case touches on a number of issues around requests for hastened death, demonstrates a failure of terminal care provision and highlights the need for ACP at the time of diagnosis or early in the course of a terminal illness. Even at a late stage, ACP provided MH with information regarding her treatment options and allowed her to gain a sense of control over aspects of her treatment.Case summaryMH had been diagnosed with Multi System Atrophy, a terminal disease involving progressive paralysis and pain, 6 years prior to referral and was being cared for at a nursing home. At the time of referral to the RPC Program, Austin Health, Melbourne, she was suicidal, was actively seeking advice from voluntary euthanasia organisations, and had been assessed by the psychiatric liaison service as meeting the diagnostic criteria for major depression. The psychiatric consensus was against initiating involuntary treatment. At this point a referral to the RPC program was made. An ACP Clinician met with MH and her family to assist her to complete an advance care plan including the appointment of a substitute decision maker and the completion of a refusal of treatment certificate. She was also informed of her right to refuse further medical treatment. MH was subsequently referred, and admitted, to a specialist palliative care unit, where she died within 24 h of admission.DiscussionThis case demonstrates a failure of terminal care provision and highlights the need for ACP at the time of diagnosis. Even at a late stage ACP offered an alternative to euthanasia in a situation where she and her family felt that they had no other options.
Core principles and guidance in relation to CPR status
Authors: George R , Sherwen E , Regnard C 
Published: May 2011

The End of Life Care Strategy (DH 2008) highlights the importance, within Care Planning, of clear and appropriate discussion and decisions about CPR. These decisions may change over time with clinical deterioration and/or therapeutic reversibility. One point at which this becomes critical is when a patient moves between care settings for example, with some clinical crisis or when care is delivered better elsewhere.Currently, while organisations have crafted their own policies, small but critical variations exist, together with the assumption that ‘our policy ends at our front door’. This has profound implications for transport and receiving services because this hiatus, for anyone in transit who does not want CPR, will inevitably make them vulnerable to inappropriate intervention. This can be overcome by harmonising CPR policies between partner organisations or across localities to ensure that there are clear ways in which people are managed when being moved.There are excellent examples of work nationally including the Unified Policy being implemented across South Central SHA, DNACPR Principles from South East Coast SHA, and the unified policy being developed within the East of England SHA.The National End of Life Care programme has scoped current work with key partners to produce a set of Core Principles and guidance for managing the intersection of policies where unification has not or cannot yet be achieved. This is aimed at organisations wishing to work together to ensure that policies connect to achieve smooth transition for the individual that safeguards choice, reduces unwanted and unnecessary attempts at resuscitation and promotes a dignified death.
New insights into place of death for people with Alzheimer's disease, dementia and senility
Authors: Verne J , Harris S , Ho D 
Published: May 2011

Between 2001 and 2009, 15% of all deaths in England had a mention (ie, either an underlying or contributory mortality coding) of Alzheimer's disease, dementia or senility. Over this period there was a 57% increase in the number of mentions from these conditions.This analysis specifically examined the age and sex distributions and places of death for each of these conditions, by whether they were coded as underlying or contributory causes of death. Major differences were found in age distribution, gender balance and place of death across these conditions, and there was also marked variations across these factors according to whether the conditions were recorded as underlying or contributory.The analysis then went on to examine patterns and effects of contributory codings of Alzheimer's disease, dementia and senility for major underlying cause of death groupings (circulatory diseases, malignant cancers, respiratory diseases) and found large differences across these groups. Place of death of each of these major groups was also examined according to whether contributory codings of Alzheimer's disease, dementia or senility were present and radical differences observed between populations with and without contributory codings.As the number of people with Alzheimer's disease, dementia and senility is projected to increase by over 70% in England between 2010 and 2030, these conditions are set to become increasingly important, both in terms of numbers of persons affected and resources consumed. Greater insight into the patterns and trends of these conditions is therefore essential to plan the provision of appropriate levels and patterns of care.
Who makes use of the enduring guardianship provisions in Tasmania (Australia) and what do they write on the forms?
Authors: Thomas R , Ashby M , Thornton R 
Published: May 2011

Under the provisions of the Guardianship and Administration Act 1995 in the state of Tasmania (Australia), the document of appointment has to be registered with the Guardianship and Administration Board. This study therefore provides an unusual opportunity to learn what people write in their Enduring Guardianship (EG) forms, who they appoint as enduring guardians, and also gives other valuable demographic information about the appointment of substitute decision-makers, the making of advance care directives in Tasmania. It also gives a rare opportunity to obtain ‘denominator’ data about the uptake of these provisions in a defined jurisdiction.A total of 502 EG forms were analysed, out of a total of 10 040 forms lodged at the time of the study, since 1995. This represents a 2% uptake by a population of approximately 500 000 over a 15-year period. In total there were 298 females and 176 males, with 28 forms where gender was not recorded.The majority of the sample consisted of forms completed by retired persons aged over 60. Despite the fact that legal assistance is not necessary to complete an EG form, 197/502 (39%) showed evidence of some qualified legal input.238/502 (47%) of the forms contained some kind of statement about care at the end of life, and indicated a preference for the deployment of timely and appropriate palliative care.Persons who appoint enduring guardians in Tasmania are predominantly older retired citizens, whose single most frequently expressed concern is for palliative care at the end of life.
Singapore nursing students' perceptions about spirituality and spiritual care: a qualitative study
Authors: Tiew L H , Drury V , Creedy D 
Published: May 2011

BackgroundSpiritual care is a central element of holistic and multidisciplinary care, but is not often integrated into practice. Some nurses may confuse spirituality with religion and refer this aspect of care to other professionals. There is little exploration of student nurses' perceptions and attitudes towards spirituality and spiritual care. Identifying student nurses' perceptions may inform educational content and practice development activities.PurposeThis exploratory study investigated nursing students' perceptions and attitudes about spirituality and spiritual care in practice.MethodIn-depth interviews were conducted with 16 final year pre-registration nursing students from three different educational institutions offering a degree or diploma programme in Singapore. Data were analysed using the Miles and Huberman (1994) research method.ResultsThree themes emerged in regards to the construct of spirituality: (1) being human, (2) spiritual well-being and (3) spiritual awareness. The construct of spiritual care revealed three themes: (1) antecedents for spiritual care, (2) role of nurses in spiritual care, and (3) nurses' spirituality. Themes relating to the construct of factors influencing spiritual care were: (1) personal factors; (2) system factors and (3) patient factors.ConclusionsStudents perceived spirituality as an innate characteristic of individuals. Spiritual awareness was perceived to develop across the lifespan and was essential for spiritual well-being. Spiritual care required nurses to engage patients in meaningful ways. Cursory attention to spiritual care was considered ineffective and students perceived that a comprehensive spiritual assessment was important for care. Participants identified that nurses need to connect with patients in a unique spiritual care-giving relationship. Students also identified that nurses with certain attributes and spiritual awareness were more likely to provide spiritual care. However, students recognised that some nurses may not be equipped to address deeper levels of spiritual care. Education and professional development for effective spiritual care needs to be offered to nurses.
Novel Teaching of Advance Care Planning Conversations for Family Doctors
Authors: Corke C , Milnes S 
Published: May 2011

Though most doctors recognize the value of Advance Care Planning (ACP) only a minority of doctors feel comfortable raising the topic with patients. This results in many patients being denied the opportunity to plan.The literature suggests approaches that are effective and some doctors represent excellent role models. We have reviewed published approaches and have recorded the conversations of doctors who appear to have highly effective strategies for the communication of the ACP message (and others who feel that their discussions are ineffective and uncomfortable).Using this information we have designed and implemented a teaching program that clearly teaches an approach that is acceptable to patients and which encourages patients to engage in ACP.Family Doctors require teaching that is easily accessible and flexible so this program includes multimodal educational components including DVD examples of good and bad approaches (with critical commentary) and an eSim component where doctors are able to conduct an on-line simulated dialogue with a simulated patient. In the case of the eSim there is ability to record and to score performance.This project demonstrates a novel education system to explain effective language to those family doctors who recognize the benefit of ACP but lack the skills to introduce the topic without upsetting their patients.
Patient-Centered Worksheets for Advance Care Planning: Education for Patients and Guidance for Clinician Communication
Authors: Pearlman R 
Published: May 2011

In the 1990s the Veterans Health Administration (VHA) developed worksheets to help patients think about and discuss aspects of advance care planning (ACP). The content of the worksheets was based on input from patients, family members, physicians, and religious leaders. Research demonstrated that the worksheets improved clinician understanding of patient values and preferences. The worksheets were updated in 2008–2009 with input from experts, including clinicians, religious leaders, ethicists, and attorneys. This was followed by an iterative content review involving subject matter experts and senior VHA leaders, and editing by experts in patient education and communication.The worksheets elicit a patient's values and/or preferences, such as hopes and fears (eg, ‘If I have a condition that will make me die very soon, even with life-sustaining treatments …, what would be your biggest fears … ? What would you most want to avoid?’), strongly held beliefs (eg, ‘I gain strength from other things like family, prayer, inspirational literature, or music. I want the following things included [in] my care: … ‘), contacts for taking care of important things, mental health care, conditions in which life-sustaining treatment would be wanted (versus not wanted), and care during one's last days.Workshop participants will assign priorities to aspects of ACP they wish to discuss, discuss their approaches to a priority aspect of ACP, complete a worksheet on the same subject, and then discuss the strengths and weakness of the worksheet for their practice. This will be repeated for several worksheets to demonstrate their applications and value in ACP.
Making health choices; Part 1. Advance Care planning in aged care project. Setting the scene
Authors: Jackson L , Sjanta R , Fullam R , Silvester W 
Published: May 2011

IntroductionThe (2009) Australian National Health & Hospital Reform Commission Report highlighted the need for advance care planning (ACP) for older persons in residential aged care facilities (RACFs). Using knowledge gained from a previous RACF Project Implementation in 2004-5, Respecting Patient Choices has developed a sustainability based model for the effective training of residential aged care service staff to deliver ACP to their residents. This presentation will provide a unique insight into the complexities of ACP implementation within Australian residential aged care.Project methods19 individual RACFs, representing 12 Aged Care organisations were selected from regional and metropolitan areas of Victoria. Three full-day workshops were delivered over a 6 month period, with RACFs expected to complete sustainability oriented tasks in between each workshop in order to meet the project deliverables. As part of the project an aged care specific ACP document was developed by an expert working party.Pre-implementation over-viewA number of contextual factors have impacted the present project including; Australian geography, RACF funding issues, and provision of medical support to RACF residents.Resultsfrom a pre-implementation policy and practice survey demonstrated a wide variation of the quality of existing ACP knowledge and practices. An audit of pre-existing ACP documents revealed that all documents were missing key elements of a best practice ACP document. 11 of the 12 organisations in the project have adopted the specially developed document.
Advance care planning – out goes paternalism, in comes consultative conversation
Authors: Finlay I 
Published: May 2011

We all know what we want – or do we? Patients cannot ‘choose’ to not be ill or avoid dying of their disease, but deserve be involved in decisions about their care.UK Mental Capacity legislation heralded a long-overdue change, encapsulated in the NHS slogan ‘no decision about me without me’; everyone must to do everything to maximise patients' decision-making ability. Impediment of brain function cannot be assumed to render decisions invalid; if decision-making capacity for a particular decision is lacking, then previously expressed wishes must be considered when making a decision in aperson's best-interest.Personhood is a function of being alive; after death one is a corpse. So, best interest to relieve suffering may necessitate risk-taking, but does not include deliberately killing the person.Advance Decisions to refuse treatment (aka Advance Directives/Living Wills) if competently drawn up and relevant to the specific situation are legally binding, signalling the person hasalreadywithheld consent to a particular intervention; they cannot direct in advance that something is done, neither drug treatment nor surgery nor lethal overdose.In ethical equipoise is an advance statement of wishes – to be considered if lack of capacity requires a best-interest decision.Advance care planning (ACP) maintains this equipoise; calm timely discussions can ‘plan for the worst and hope for the best’. Open, realistic conversations address concerns, avoid false reassurance, and honestly discuss options.Honest ACP can reveal service deficits that militate against excellent care, galvanising action to improvements in care.
Allergy among veterinary medicine students in The Netherlands
Authors: Samadi Sadegh , Spithoven Jack , Jamshidifard Ali-Reza , Berends Boyd R , Lipman Len , Heederik Dick J J , Wouters Inge M 
Published: June 2011

BackgroundVeterinary medicine students who practice with animals are potentially exposed to many occupational agents, yet sensitisation and allergic symptoms among this group have not been studied extensively.ObjectiveThe objective of this study was to estimate the prevalence of sensitisation and allergic symptoms in veterinary medicine students in association with study specialisation over time.MethodsA questionnaire-based cross-sectional study was conducted. Blood was collected and tested for total and specific serum IgE for 16 different common and study-specific allergens using enzyme immunoassay.ResultsNew development of self-reported allergic symptoms to various allergens occurred in 8.7%, of which 44% was deducted against animals. Handling farm animals was strongly associated with self-reported allergies to various allergens (OR=6.9, 95% CI 1.9 to 25) and animal allergens (OR=12, 95% CI 1.4 to 103). Sensitisation to at least one allergen occurred in 33.1%. Sensitisation prevalence tended to be elevated in later years of the equine study program. In contrast to self-reported allergies, the prevalence of sensitisation to any allergen decreased with prolonged study duration for those specialising in farm animal health (years 3–5: OR=0.5, 95% CI 0.3 to 1.1; year 6: OR=0.2, 95% CI 0.1 to 0.5). This was independent of whether people were raised on a farm, which is in itself a protective factor for allergy and sensitisation.ConclusionThis study provides evidence of an elevated prevalence of allergic symptoms with increasing years of veterinary study, suggesting that contact with animals, more specifically contact to farm animals, is a risk factor for the development of symptoms.
Detection of Promoter Hypermethylation in Salivary Rinses as a Biomarker for Head and Neck Squamous Cell Carcinoma Surveillance
Authors: Carvalho André Lopes , Henrique Rui , Jeronimo Carmen , Nayak Chetan S. , Reddy Ashok N. , Hoque Mohammad O. , Chang Steven , Brait Mariana , Jiang Wei-Wen , Kim Michael M. , Claybourne Quia , Goldenberg David , Khan Zubair , Khan Tanbir , Westra William H. , Sidransky David , Koch Wayne , Califano Joseph A. 
Published: June 2011

Abstract
Purpose: Hypermethylation of tumor suppressor gene promoters has been found in head and neck squamous carcinoma (HNSCC) and other solid tumors. We evaluated these alterations in pretreatment salivary rinses from HNSCC patients by using real-time quantitative methylation-specific PCR (Q-MSP).
Experimental Design: Pretreatment saliva DNA samples from HNSCC patients were evaluated for patterns of hypermethylation by using Q-MSP. Target tumor suppressor gene promoter regions were selected based on a previous study describing a screening panel for HNSCC in a high-risk population subjects. The selected genes were: DAPK, DCC, MINT-31, TIMP-3, p16, MGMT, CCNA1.
Results: We analyzed the panel in a cohort of 61 HNSCC patients. Thirty-three of the analyzed patients (54.1%) showed methylation of at least one of the selected genes in the saliva DNA. Pretreatment methylated saliva DNA was not significantly associated with tumor site (P = 0.209) nor clinical stage (P = 0.299). However, local disease control and overall survival were significantly lower in patients presenting hypermethylation in saliva rinses (P = 0.010 and P = 0.015, respectively). Multivariate analysis confirmed that this hypermethylation pattern remained as an independent prognostic factor for local recurrence (HR = 12.2; 95% CI = 1.8–80.6; P = 0.010) and overall survival (HR = 2.8; 95% CI = 1.2–6.5; P = 0.016).
Conclusions: We were able to confirm an elevated rate of promoter hypermethylation in HNSCC saliva of patients by using a panel of gene promoters previously described as methylated specifically in HNSCC. Detection of hypermethylation in pretreatment saliva DNA seems to be predictive of local recurrence and overall survival. This finding has potential to influence treatment and surveillance of HNSCC patients. Clin Cancer Res; 17(14); 4782–9. ©2011 AACR.