A systematic review and meta-analysis was performed in line with recommendations from Preferred Reporting Items for Systematic Reviews and Meta-Analyses and the Meta-analysis Of Observational Studies in Epidemiology (MOOSE) guidelines. A comprehensive computerised search of 14 databases, supplemented by a manual review of the literature was performed for all peer-reviewed publications, from 1980 to the present, identifying rates of incongruence for cancer and/or non-cancer cohorts. Aggregation of outcomes was performed using a random effects model.

A total of 26 articles were identified that met the search and inclusion criteria. A non-cancer diagnosis was found to significantly increase the incidence of incongruence with a weighted risk ratio of 1.23 (95% CI 1.01 to 1.49, p=0.04) and this disparity appears to have increased since 2004. A moderate degree of heterogeneity was noted (I²=62%).

These findings pose a significant challenge, as a ‘good’ death has been closely matched to achieving patients’ wishes, including preferred place of death. Despite increasing awareness that those dying from chronic non-malignant diseases have extensive palliative care needs, much is still to be done to preserve their autonomy and reduce powerlessness in the face of death.

To scrutinise global cancer cachexia awareness and relative web guideline implementation among oncology societies.

Systematical identification of scientific and policymaker oncology societies and their guideline implementation on cancer cachexia. Assessment of the general level of awareness on cancer cachexia and evaluation of intercontinental and national variations on guideline implementation.

144 000 web pages were scrutinised, and 275 oncology societies identified covering a large array of oncology setting (educational/clinical/research/policymaker); 71 were international (African, American, Asian, European, Oceania and Intercontinental), 110 belonged to the top 10 countries with the highest development index and 94 pertained to 10 countries with a long lasting tradition in medical oncology (not included in the top 10 high developed countries). Overall, only 10/275 web sites provided guidelines; six of them (2.2%) provided guidelines for physicians and four (0.7%) for patients. Half of the guidelines (4/10) were outdated. All guidelines for physicians reported references, while only one of the recommendations for patients reported references to support its sentences.

Cancer cachexia global awareness appears extremely low; guideline implementation on the web was inconsistent for any category analysed (nation vs continent vs international vs society type vs physician vs patient oriented) and for updating.

Between March 2008 and July 2010 patients admitted to five wards of an acute hospital were screened using the question ‘Is this patient so unwell you feel they could die during this admission?’ Once 40 patients were recruited, the brief EOL tool was introduced to the wards and a further 30 patients were recruited. Symptom scoring using the Edmonton Symptom Assessment System (ESAS) began when the patient was recognised as dying. Relatives were asked to complete the Views of Informal Carers—Evaluation of Services questionnaire to validate the results of the contemporaneous symptom assessments and assess the impact of the tool.

The sensitivity of the screening question was 57%, specificity 98% and positive predictive value 67%, so the question was useful in enrolling study patients. There were limitations with the ESAS but core EOL symptoms were scored more frequently after the tool was introduced. Questionnaire responses suggested relatives perceived aspects of care improved with the EOL tool in place.

It is possible to identify dying patients and study care given to them in hospital in real time. Outcome measures need to be refined, but contemporaneous symptom monitoring was possible. We argue interventions to improve EOL care should be unequivocally evidence-based, and research to provide evidence of impact on the patient experience is possible.

969 patients were included. 550 (57%) people completed ACP. 414 (75%) achieved their choice of place of death. For those who chose home, 34 (11.3%) died in hospital; a care home 2 (1.7%) died in hospital; a hospice 14 (11.2%) died in hospital and 6 (86%) who chose to die in hospital did so. 112 (26.5%) of people without ACP died in hospital. Mean number of days in hospital in the last year of life was 18.1 in the ACP group and 26.5 in the non-ACP group(p<0.001). Mean cost of hospital treatment during the last year of life for those who died in hospital was £11,299, those dying outside of hospital £7,730 (p<0.001). Mean number of emergency admissions for those who died in hospital was 2.2 and who died elsewhere was 1.7 (p<0.001).

ACP can be used routinely in a hospice setting. Those who used ACP spent less time in hospital in their last year. ACP is associated with a reduction in the number of days in hospital in the last year of life with less hospital costs, supporting the assumptions made in the End of Life Care Strategy 2008.

We reviewed existing guidelines for diseases expected to require palliative care issued by the National Board of Health and Welfare, existing regional clinical practice guidelines and the annual report of the Swedish Register of Palliative Care (SRPC) up until 2010.

We found 11 quality indicators pertinent to palliative and end of life care in the guidelines for cancer diseases and ‘The care and nursing of the elderly’. The indicators included assessment and treatment of pain, communication with the patient and the family, documentation in the patient record and registration in the SRPC. In the national guidelines for cardiology, pulmonary diseases, stroke, diabetes and dementia, there were no indicators relevant for palliative or end of life care.

In the existing Swedish national guidelines for many different diseases, there is still a great need to define clinically relevant and feasible outcome measures of quality of palliative and end of life care.

A population-based cohort of subjects with active oncological disease who died between 2000 and 2002 was constructed retrospectively using institutional databases. Clinical trial participation and care during the last 2 months of life were analysed.

A total of 395 eligible patients were identified. In the 2 months prior to death, 94 (24%) patients received chemotherapy, 232 (59%) were hospitalised, 249 (63%) were in hospice and 315 (80%) had a do not resuscitate (DNR) code status. Only 8 (2%) patients received cardiopulmonary resuscitation (CPR) and 26 (7%) patients participated in a clinical trial. Patients in clinical trials were more likely to receive chemotherapy (69.2% vs 20.6%; p<0.001), undergo intubation/mechanical ventilation (15.4% vs 5.4%; p=0.040) and less likely to have DNR code status (50.0% vs 81.8%; p<0.001) when compared with patients not in clinical trials. However, no differences in hospice enrolment, days in hospice, days in the hospital, CPR or location of death were noted.

Although opportunities for improvement exist, high quality end-of-life care was found in this study of patients with active malignancy. A majority (over 60%) of patients enrolled in hospice prior to death, 80% had a DNR status and only 2% received CPR. Although clinical trial participants received more aggressive treatments during the last 2 months of life, they did not appear to have lower quality end-of-life care.

An audit of the quality of pre-existing documentation used to record resident treatment preferences and end-of-life wishes at participating RACFs; development and pilot of an aged care specific Advance Care Plan template; an audit of the completeness and quality of Advance Care Plans completed on the new template during a systematic ACP intervention.

19 selected RACFs (managed by 12 aged care organisations) in metropolitan and regional areas of Victoria.

Documentation in use at facilities prior to the ACP intervention most commonly recorded preferences regarding hospital transfer, life prolonging treatment and personal/cultural/religious wishes. However, 7 of 12 document sets failed to adequately and clearly specify the resident's preferences as regards life prolonging medical treatment. The newly developed aged care specific Advance Care Plan template was met with approval by participating RACFs. Of 203 Advance Care Plans completed on the template throughout the project period, 49% included the appointment of a Medical Enduring Power of Attorney. Requests concerning medical treatment were specified in almost all completed documents (97%), with 73% nominating the option of refusal of life-prolonging treatment. Over 90% of plans included information concerning residents’ values and beliefs, and future health situations that the resident would find to be unacceptable were specified in 78% of completed plans.

Standardised procedures and documentation are needed to improve the quality of processes, documents and outcomes of ACP in the residential aged care sector.

An online survey was designed, piloted and emailed to 220 palliative care providers across the four UK countries. It included a total of six questions. Quantitative data were analysed using descriptive statistics. Qualitative data were analysed thematically.

There was a 66% response rate. Of those providers, 60% indicated that public health approaches to death, dying and loss were a current priority for their organisation. Respondents identified a range of work being undertaken currently in this area. The most successful were felt to be working with schools and working directly with local community groups. The findings demonstrate the relevance of a public health approach for palliative care services and how they are currently engaging with the communities they serve. Although the approach was endorsed by the majority of respondents, various challenges were highlighted. These related to the need to balance this against service provision, and the need for more training and resources to support these initiatives, at both national and community levels.

In Phase 1, we undertook eight focus groups and four individual interviews with 58 health professionals from general practice, specialist palliative care and acute hospitals, exploring perceived education and training priorities. Phase 2 of the study involved a survey of palliative care need at two hospitals in England. Hospital based doctors and nurses completed questionnaires to identify patients with palliative care needs and to respond to questions about their training and education needs.

Various barriers exist to the provision and management of palliative care, not least a need for more education and training. Focus group participants felt they were not adequately trained to address prognosis and goals of care with patients and their families. In Phase 2 of the study, 171 nursing staff and 81 medical staff completed the questionnaire and two-thirds of our sample felt they required additional training in palliative care.

Although important, the use of standardised care pathways alongside the provision of education and training for healthcare professionals alone will not improve quality of care. More work is needed to examine and clarify the interplay of: behaviour change, setting, the ‘cure’ orientation approach, type of health professional and nature of any educational intervention in order to effect sustained behavioural change.

As part of mixed methods, processual evaluation of a series of education workshops, a pre and post survey instrument was developed, consisting of open and closed questions assessing knowledge of services and attitudes towards palliative care. Before and after each workshop attendees were invited to complete the survey.

Neonatal units in hospitals across London, including examples of intensive care, high dependency and special care units.

331 healthcare professionals attended the sessions, and 264 (80%) completed questionnaires. The majority of attendees were experienced neonatal nurses working in neonatal intensive care  (61% more than 7 years) but with limited experience of palliative care services. Over 79% of respondents reported that the workshop completely met their learning needs. Post-session 80% of respondents felt confident referring to palliative care services, compared with 46% before (p<0.001). Analysis of open and closed text responses revealed a shift in attitude after the sessions from a focus on dying/end-of-life, towards integrating palliative care as part of a holistic treatment plan.

A short (half day), locally delivered workshop can change attitudes and increase knowledge in neonatal staff. Such a workshop can serve as a first step in facilitating access to and utilisation of a variety of palliative care services.

This was an observational audit to determine whether patients in a tertiary Melbourne hospital had goals and limitations of treatment documented by the treating team, and the association with length of stay and outcome.

Over 2 weeks, the records of hospital inpatients were reviewed. Data included demographics, co-morbidities, goals and limitations of treatment (LOT), need for referral to palliative care and outcomes.

290 records were reviewed; 55% were male, average age was 67. 60% of patients had no goals of treatment. Ten patients were asked about advance care plans. Of those who should have had LOT according to hospital policy, 55% had no plans. 23 patients were suitable for Palliative Care, but only 9 had been referred. 18% of patients were confused; 60% of these had no record of discussions with family. 9% of patients died, 76% went home and 8% to residential care.

There was a lack of setting goals and limitations of treatment and under-referral to palliative care. Patients were more likely to die or go to residential care the longer they stayed in hospital and the greater their co-morbidities.

There is potential to improve the practice of setting goals and limitations of treatment in this acute hospital.

To assess preferences indicated on ACDs for content, consistency within the document and concordance with medical orders on the Resuscitation Plan (RP) (hospital POLST form).

Retrospective analysis of ACDs completed during facilitated advance care planning in 2011; including assessing consistency between the specific treatment wishes (CPR/Life-Prolonging Treatment (LPT)) and documented outcome preferences, and evaluating concordance of RP orders and ACD requests.

153 patients completed ACDs, 88% also appointed a Substitute-Decision-Maker and 90% documented CPR/LPT preferences. Of these 51% chose ‘No CPR’, 40% chose ‘CPR if medically beneficial’ and 9% accepted medical advice that ‘CPR would be of no benefit’. 48% indicated they didn't want LPT, 50% wanted LPT if doctors anticipated a reasonable outcome and only 2% wanted LPT for as long as possible. 71% identified other undesired treatment(s) (38% ventilation, 37% artificial nutrition, 12% surgery, 10% dialysis). 84% documented their interpretation of unacceptable outcomes (inability to eat—38%, or communicate—43%, impaired cognition 33%, bedbound 33%).CPR and LPT requests were internally consistent in 88% and 85% of cases. A RP was completed during admission in 70 patients; 89% were concordant with ACD requests, 10% limited treatment more and 1% recommended more treatment.

Most patients clearly documented preferences and undesired outcomes that were interpretable into actionable medical orders which were followed.

Facilitated ACD completion ensures patients' wishes are known and respected.

To estimate the impact of advance care planning activity on the number of hospital admissions, occupied bed days, and hospital costs in Adelaide, South Australia.

We apply the results of previous research on the impact of advance care planning,^1–3 to the number of advance care plans made following implementation of the Respecting Patient Choices (RPC) Program in community and hospital settings in Adelaide, to estimate the number of saved hospital admissions, occupied bed days, and costs.

Data records began in 2005 during The Queen Elizabeth Hospital RPC pilot. Data collection from community settings began in 2008, and then from other public hospitals in the Central and Northern Adelaide metropolitan area from 2010. A total of 2604 advance care plans were made and the estimated Occupied Bed Days saved was 23 957. The number of admissions to hospitals from the 42 Nursing Homes engaged in advance care planning was estimated to be reduced by 840 over the last 2–3 years.

Several assumptions are used in applying previous research to calculate the estimated hospital savings. The estimates suggest significant savings, which should be of interest to health administrators. Costs and savings will be detailed in the presentation. Further investment and evaluation of the impact of advance care planning is clearly warranted.

A relative small investment in advance care planning has the potential to reap considerable savings in hospital use, particularly at the end of life.

Phase 2 GSFAH included 8 acute hospitals, ranging from 1 to 3 wards per hospital. A comparative evaluation was carried out before and after the 9 month intervention of the GSFAH training programme.

An analysis of qualitative and quantitative data was undertaken by ICG GHK to analyse evaluation data from Phase 2 of the acute hospital programme. Eight hospitals participated and completed the following surveys before and 1 year after implementing GSF in their hospitals;

The key results included improvements in staff knowledge and confidence in most areas of end of life care, increased identification of patients nearing the end of life, increased advance care planning discussions, improved communication with primary care teams etc details available.

A hospital compromise for ACP was agreed ie use of introduction, DNAR, LPOA/proxy and noting preferred place of care

The programme offers hospitals the opportunity to raise awareness around end of life care, develop and educate all staff within the organisation, improve cross boundary care and to move onto to deepen and work towards accreditation.

To describe how we were able to fulfil the dying wish of an ICU patient to spend an afternoon at home with family, despite ongoing requirement for intensive organ supports. We describe the positive impact of the visit on the patient, her family, and staff.

A 58-year-old lady spent over 4 months in our Intensive Care Unit following a bilateral lung transplant which was complicated by respiratory and renal failure. She was dependent upon mechanical ventilation and continuous renal replacement therapy, but was able to fully communicate her wishes. A decision was made to withdraw cardio-respiratory and renal support on the grounds of futility of ongoing active management.

The patient was safely transported. During the visit, she commented to her family that she was at peace, and ready to die, something that she had not previously felt. This provided closure for the patient and her family, and significantly helped her family come to terms with her impending withdrawal of respiratory support. She was transported back to the Intensive Care Unit after her home visit, and died the following day after withdrawal of respiratory support.

Extra-ordinary measures taken to fulfil the dying wishes of our patient were able to significantly improve the dying experience for her and her family.

 To provide a centralised and coordinated approach to end-of-life care pathway activity in Victoria, focusing on the gold standard Liverpool Care Pathway (LCP).

 To support services in planning, implementing and evaluating all end-of-life care pathways (EoLCPs).

We investigated end-of-life care (EoLC) activity across Victoria and ways in which emerging activity could be encouraged, supported and sustained.

EoLC activity varies considerably across services and regions, ranging from preliminary exploration to pathways that are firmly embedded in organisational policy, culture and practice. Many of the pathways are registered LCPs or adaptations of the LCP. Others include the Residential Aged Care End of Life Care Pathway.

Resources (current and in development) include:

End-of-life care is core business and an integral part of accreditation in most health settings.

This programme supports Victorian health services to develop expertise, confidence and consistency in caring for patients and families in the last hours and days of life.

To develop a strategy to ensure timely defibrillator deactivation in palliative patients across all environments of care.

Following 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.

The 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.

This 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.

Palliative care services need to adapt to contemporary clinical advances and incorporate such advances into the patients' advance care plans.

To show case Palliative care as an efficient alternative to euthanasia for terminally ill persons.

I examined request for euthanasia and or assisted suicide on the basis of personal interviews carried out on terminally ill patients in the six geo-political zones of Nigeria in the last 24 months; current arguments for and against the concept and views expressed by stake-holders on the concept.

Outcome of the study carried out shows that request for euthanasia and or assisted suicide, are largely due to the fear of being a burden and abandoned by families and relatives.

Since it deals with care rather than cure, a combination of doctors, nurses and social work palliative care specialists, Massage therapists, pharmacists, nutritionists, chaplains, amongst others, will re-assure terminally and chronically ill patients that they are not a burden, and that the remaining part of their lives are worth living.

Palliative care should be the focus of all government across the globe so that, terminally and chronically ill persons can be adequately catered for as they approach their end of life. If this is wholly embraced, the request for euthanasia and or assisted suicide will be condemned to the dustbin of history.

To test a structured process for identifying eligible patients for upstream advance care planning (ACP) conversations through development and validation of a quantitative instrument.

Recruitment 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's r correlations.

59% 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).

The 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.

To examine how Australian cancer patients consider ACP and inform the development of an Australian Cancer Centre's ACP programme.

A 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.

Twenty-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.

Findings 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.

To identify the conditions for successful integration of ACP into Australian community palliative care services.

Using a multi-site action research approach data collected between 2008 and 2010 included medical record audit; document analysis; key individual health professional interviews (22); six clinician focus group interviews (38).

Nine Australian community palliative care services participated; two sites later withdrew. The services differed in geographic location, staff profile, client and family demographics and services offered. The conditions for success were determined by an interconnected construction of supportive relationships between government (including National, State and local government authorities), health care organisations who manage the community service, and the microcosm of community palliative care practice. The specific conditions identified related to policy, financial resources, size of the service, and staffing profile, documentation processes, and geographic context.

Nationally a consistent ACP policy environment alongside a supportive economic health care climate is required if ACP is to be routinised into health care services.

Individual clinicians or small community services may demonstrate short-term success in ACP but long-term it is contingent on conditions of stable health care infrastructure, supportive national policy adequate funding and stable workforce.

Studying actual treatments in relation to preferences for starting or forgoing treatment of older people at the end of life.

Mortality 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.

In 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.

Concordance 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.

To assist RACF staff to

The 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.

Project 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.

The 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.

The 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.

Overall, this study aimed to determine whether a SSP provided by an advanced practice nurse can improve outcomes for patient and caregivers at home compared to regular support from the nursing team. Specific aims are to: improve symptom relief for patients, enhance psychosocial support for patient and carers, facilitate place of death according to patient and carer wishes and articulate a Nurse Practitioner (NP) model supporting complex End of Life (EOL) care.

The SSP provided by the NPC established both patient and carer needs, from which an anticipatory care plan was developed to provide a platform of future support for the patient and the carer.

47% of patients who had the SSP died at home compared to 33% who did not. 60% of patients who had the SSP died where they wished compared to 33% who did not.

This intervention was provided by a NPC, it was possible to identify where an endorsed NP would enhance access to medications

A SSP provided by an advanced practice nurse can improve outcomes for patient and caregivers at home.

To 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.

A systematic review of the evidence to support the use of electronic health records in ACP will be presented.

Evidence-based and generalisable approach to documentation and communication of ACP will be presented.

Barriers, risks and benefits will be discussed.

Advance 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.

A 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.

710 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.

Most 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.

There 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.

Greater responsibility of planning for death by families and individuals can be encouraged by health professionals and community educators through appropriate engagement.

To ascertain the prevalence and type of advance directives used in SA.

Questions exploring the prevalence and type of advance directives experienced by the South Australian public were submitted to the Spring South Australian Health Omnibus Survey (HOS) 2012. The HOS has been conducted regularly since 1991 and is used by government and nongovernment organisations to assess the healthcare needs of the South Australian community. The survey comprised a random sample of 3055 members of the public drawn in a multi-stage, systematic sampling technique*.

Analysis of an unweighted sample of 3055 participants showed that 40% had not completed any advance directive and that 27% have no interest in learning about advance directives. Age and other demographic factors were indicative of differences in participation rates.

Using the HOS survey enabled analysis of demographic and sociological characteristics of the SA public with prevalence and type of advance directives experienced and provided evidence-based knowledge of the public's engagement in autonomous decision-making for future healthcare and welfare.

Accurate ascertainment of the South Australian public's current levels of knowledge and engagement with advance directives can assist future advance care planning initiatives in South Australia as well as provide a basis for further research designed to enhance completion rates of these instruments by the general public.

To determine if active promotion of ACP has improved awareness and acceptance in the community

Data collected over a 4 year period to determine public awareness of ACP in our local community. Information collected included age, gender, existing ACP documents and their storage location. At the end of the 4 year period data collected was analysed to determine if the pro-active approach had been effective in the above stated areas.

Over 4 years the table shows a 100% increase of people with Advanced Care Plans. The unexpected positive outcome is the shift in awareness of ACP to younger age groups. Anecdotally people surveyed indicated an awareness of the Respecting Patient Choices branding and literature received through legal services, health services, medical centres and community avenues.

Direct contact with individuals has proven to be an effective way to promote community awareness and acceptance of ACP in the rural community.

Data collected proves that active promotion of ACP with the community results in a positive change of attitude towards ACP—no longer a taboo subject.

To 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).

An on-line opinion poll of a nationally representative sample of 1523 respondents including five questions regarding core ACP activities. Pearson ² tests were used to compare the prevalence of ACP in FH and the rest of Canada.

Compared 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).

The 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.

Engagement 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.

To understand and improve the knowledge and attitudes of people over the age of 60 years to ACP in South East Queensland.

Employing 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.

While 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.

Despite 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.

ACP 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.

To consider how law can support advance care planning and end of life care.

Although 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.

If 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.

But 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.

Legislation 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.

But 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.

To compare the prevalence of GP-patient end-of-life treatment discussions and patient surrogate appointments in Italy, Spain, Belgium and the Netherlands and examine associated factors.

A cross-sectional, retrospective survey was conducted with representative GP networks in four countries. GPs recorded the health and care characteristics in the last 3 months of life of patients who died non-suddenly. Prevalences were estimated and between country differences, and country-specific associated patient and care factors, were examined using logistic regressions.

4396 non-sudden deaths were included. GP-patient discussion of treatment preferences occurred for 10%, 7%, 25% and 47% of Italian, Spanish, Belgian and of Dutch patients respectively. Furthermore, 6%, 5%, 16% and 29% of Italian, Spanish, Belgian and Dutch patients had a surrogate decision-maker. Despite some country-specific differences, previous GP-patient diagnosis discussions, more frequent GP contact, GP provision of palliative care, the importance of palliative care as a treatment aim and place of death were positively associated with preference discussions or surrogate appointments. A diagnosis of dementia was negatively associated with preference discussions and surrogate appointments. The single most important factor was prior GP-patient diagnosis discussion.

The study revealed a higher prevalence of treatment preference discussions and surrogate appointments in the two northern European countries.

Delaying diagnosis discussions impedes anticipatory planning, whereas early discussions for all patients, particularly those with cognitive decline, and palliative care provision support patients' participation in decision-making.

The 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.

ACP 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.

Issues were identified in most states/territories that could be disincentives to effective ACP.

Problems 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.

Ensuring 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.

The 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.

The 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.

In 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.

To construct a working picture of the different ACD legislative and policy frameworks currently operating in Australia and other countries under Westminster systems.

An 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.

ACD 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.

Legislative 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.

The 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.

This project, funded by the Dementia Consumer Research Network within Alzheimer's Australia, aims to improve the promotion and uptake of advance care planning for people with dementia in primary and community care.

The project involves a nationally-focused website, promoted through a broadly based social marketing campaign. Needs assessment involved extensive consultations with both consumers affected by dementia and professionals across Australia as well as an online survey with 249 respondents.

Key aspects of the website are: it moves beyond providing information to include a number of consumer-focused templates that help users take action related to planning ahead; it provides information for people living with dementia and their family carers, healthcare professionals and the general community; and it has information and resources relevant for all States and Territories.

While the website caters to people with early dementia and family carers, it also targets people in the general community who do not have dementia, as ACP is most helpful if done before a person starts to lose capacity through dementia. The project will enlist a number of State and National organisations as campaign supporters to promote a set of core messages about ACP and the website.

Dementia can have a devastating impact on individuals and families, and this new programme to promote ACP will help to reduce that impact.

This paper summarises research into the questions of what are the ethical issues about involving PWD in research?

A narrative literature review was conducted and analysed with reference to the Australian National Statement on Ethical Conduct in Human Research.

The review can be summarised under the following themes: substitute judgement; how capacity can vary due to risks; barriers to recruiting people with dementia; how to determine capacity to give consent; and gaining assent rather than consent from participants. The results of the review were further analysed in relation to the current guidelines for research and existing guides for developing advance care plans.

Gaps in the National Statement included: how capacity should be determined; what defines best interests; how assent and dissent by someone with dementia should be determined and respected; and whether or not people with dementia should be included in high-risk research.

Researchers, ethics committees, health care professionals, PWD and their carers need better guidance about how to address this issue in advance care plans.

This paper re-examines these two main arguments in the context of dementia patients. It rejects the first argument. However, it argues that the second argument is important and is often correct. Its correctness can only be determined in a case by case basis, taking into account all relevant circumstances. Nonetheless, this has implications for how we ought to draw up an advance decision that is to be legally binding, and for whether we ought to consider alternative forms of advance care planning. One alternative put forward in the Nuffield Dementia Report 2009 is a form of proxy decision making. This paper examines that proposal.

Conceptual analysis of arguments (a) and (b), with some reference to the relevance of a recent English case to advance statements of wishes and preferences.

The paper concludes that argument (a) can be rejected, but that argument (b) is sound and has implications for the forms of advance care planning we ought to adopt in the case of dementia patients, and for the shape that current advance decisions now take.

A form of proxy decision making might be the best way of resolving the dilemma about how to respect autonomy and welfare interests that survive the loss of capacity in dementia patients.

The form of proxy decision making proposed in the Nuffield Dementia Report 2009 is the best way of solving the dilemma and might be preferable to legally binding advance decisions.

To review the impact of the introduction of the use of the ARP and the PARP across The Townsville Hospital, a tertiary hospital in provincial Queensland.

The use of the ARP or satisfactory equivalent documentation was audited in the medical records of all people who died in The Townsville Hospital over 3 months from 1 January 2013 to 31 March 2013. Staff from across the hospital, including the MET service, were interviewed to ascertain their opinions on the impact of the introduction of these documents.

Preliminary results from a limited QA audit in 2012 indicate that about 80% of dying patients had a resuscitation plan in place when they died. Clinicians are very positive about the benefits.

The response of clinicians indicates that care has been improved by the ARP with patients' wishes being respected. The quantitative data are likely to confirm this. The introduction of these forms across the hospital has contributed to a changed culture of health care to the benefit of patients, their families and clinicians.

To 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.

A ‘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.

Overall 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.

The GOC form has been well received within the hospital and is used more extensively than the previous ‘NFR’ form.

The 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.

Retrospective 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.

A total of 456 incidents on 351 adult patients are analysed.

A 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.

To explore the incidence and themes of loss and grief that were shared within the context of ACP education workshops.

A qualitative approach was used with participant observation and reflective journaling to record events within the implementation of ACP workshops. Thematic analysis was then employed to identify the various themes and frequency of loss and grief issues disclosed within the workshops.

There were two to three significant loss and grief statements made or disclosures of personal losses in each workshop. Loss and grief themes included fear of death, loneliness, suffering and vulnerability. Grief experiences included watching loved ones be palliated or die in a way that did not match personal values.

Loss and grief for older people outside the context of bereavement is under researched. Despite recognition of depression in the elderly there is scarcity in the literature of general grief and loss experiences and how this may impact the engagement and participation in ACP training. There are both historical and sociological grief and loss issues for this generation which require exploration for successful engagement in ACP planning.

Participants had many fears related to previous loss experiences and misconceptions of the ACP process. Disclosures resulted in increased participation in the group and greater understanding of the benefits of the ACP process.

To 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.

This 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.

The 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.

The 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.

This 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.

To provide a structured way to think about what causes these conflicts and the communication skills one might use to negotiate conflicts over treatment for seriously ill patients.

To help structure, health providers’ thinking about these cases, a question, "Why is this loving and caring family making a decision that you think is unreasonable?" will be discussed. The talk with focus on the psychology and business literature on conflicts to posit three reasons for why conflicts occur: misunderstandings over what is happening; inattention to the feelings associated with these conflicts and rigid beliefs about one’s identity. A variety of communication skills – ranging from ASK-TELL-ASK, to "rolling with resistance" to responding empathically to emotions will be discussed to help negotiate these conflicts.

A specific framework can help health care providers negotiate conflict with families over care at the end of life.

To review the ethical challenges of providing high quality palliative care in the ICU.

Clinical experience and review of the literature

Three 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.

Using 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.

Classical 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.

To assess the empirical information about the economic effects of ACP-programmes, discuss the ethical implications of the findings, and to outline an agenda for future research.

Systematic review of the literature assessing the cost-implications (efficiency) of ACP programmes.

Preliminary findings indicate that the costs for ACP-programmes may be outweighed by their savings; however, robust empirical research to understand the effects of ACP has not yet been undertaken, partly because of methodological challenges, and possibly also for political reasons.

The cost-effectiveness of ACP-programmes is a delicate issue, both politically and ethically: If ACP-programmes are cost-saving, they would promote a wise use of scarce health care resources. However, a strong expectation of cost-savings could compromise the open and non-directive character of the facilitation process constitutive for ACP. We will discuss whether ACP programmes should adopt explicit conflict of interests policies. In any case, ACP-programmes must not be misconceived to be primarily an instrument for containing health care costs.

There should be more systematic economic evaluation of ACP-programmes and an open discussion of the corresponding ethical implications. This will be necessary to deal openly with potential conflict of interests and prevent a political backlash against the ‘ACP-movement’.

This qualitative study investigates ACP in UK primary care, establishing current experience, ideas and views on ACP, and identifying the extent to which guidance is embedded in practice.

Fifteen General Practitioners and four Old Age Psychiatrists took part in semi-structured interviews. Themes arising were discussed in a lay focus group, before a questionnaire survey of 140 primary care practices tested findings in detail.

Many primary care physicians remain unfamiliar with guidance on ACP and lack experience in its use. However, while they feel a need for support and training, practitioners are well aware of barriers to ACP as well as potential ethical problems, and can provide relevant suggestions for improvement. Agreeing with lay people that primary care has a key role in this process, professionals express strong commitment to make more use of ACP, ensuring patients' wishes are recorded and respected.

Primary care is an ideal environment to build on conceptual understanding of ACP, translating evidence, policy and guidance into practice.

Primary care professionals show keen interest and openness to ideas regarding ACP. These findings provide novel insight into understanding and use of ACP in primary care, with potential to facilitate development of practical strategies to enhance implementation of quality, patient centred ACP in this setting.

To engage with General Practitioners in providing advance care planning (ACP) to their patients demonstrating a sustainable ACP model for general practice.

Funding provided by Barwon Health for 2.0 EFT ACP Facilitator positions.

Key stakeholders were engaged and Memorandum of Understanding developed.

Participating practices were identified through an expression of interest and GPs were encouraged to complete their own ACP. Patients with chronic or life limiting illness and aged were the target population including other interested individuals. This was achieved via the >75 Health Assessment, Chronic Disease Management Planning and routine consultations. Engagement with GP staff occurred collaboratively with Barwon Medicare Local throughout the project period.

Providing trained staff from a funded ACP program to 18 practices in the Geelong region has resulted in 1350 referrals for ACP and a completion rate of 87% (1174). From this cohort, there have been 295 in-patient episodes of care with a number of ACP's implemented as required.

Similar findings to the smaller 2010 pilot study have been demonstrated through patients exhibiting a high rate of acceptance, participation, document completion and satisfaction when ACP is provided through GP's.

This larger study has demonstrated that General Practice is integral to the commencement of ACP discussions in the community, where there is established trust and confidence and whilst patients are ‘relatively well’, in the absence of acute illnesses. Barwon Health's catchment includes a higher proportion of older persons in comparison to the state average and is therefore significant that the general awareness of ACP is raised routinely within the community.

Table 2

Barwon Health's Respecting Patient Choices program data

To explore patient's understanding of the GP's role in decision making in incompetence.

In-depth interviews with 19 people, aged ≥65 years, recruited from five general practices analysed using Giligan's (Gilligan et al., 2006) listening guide.

Participants distinguished between their GP and other doctors. Participants described their relationship with their GP as grounds for providing the GP with a distinct role in the event of their future incompetence. Participants expected this relationship to inform the way their GP approached advance care planning.

Participants expected the GP to have a richer role reflective than they are commonly provided. Relational ethics and the concept of ‘generalism’ provide a theoretical basis for expanding the GP's role.

Current characterisations of the GP's role overlook much of what they can bring to the process of advance care planning.

The course aims to develop participant's knowledge, experience of, and confidence in ACP. Through improving the communication skills of the healthcare workforce, patients and whanau/family are supported to make informed decisions regarding their end of life preferences.

Pre-course material provides substantial background and theory in ACP and communication. Participants are also required to engage in their own ACP process before attending the course. Video clips and case studies of people's experiences are used to bring patients and whanau/family into the training environment. Facilitated role play (involving a professional actor and video play back) is a substantial component of the course. Each course can be attended by up to 10 participants.

164 clinicians completed the course in the 2012 pilot period. Course evaluation notes 93% of participants would definitely recommend the course to other clinicians.

Qualitative data analysis of pre and post confidence scores demonstrates statistically significantly increased confidence in:

This evidence based training programme is the first of its kind in New Zealand. In 2013 we aim to train a further 200 healthcare staff.

The course significantly increases participant's confidence in communicating with patients and their whanau/families.

To evaluate the progress of the first seven GP practices to undertake GSF Going for Gold training and GSF Accreditation with the Quality Hallmark Award, endorsed by the Royal College of GPs.

Accreditation included 10 key metrics, a portfolio with good practice examples, After Death Analysis Audit and a follow up conference call. Comparative benchmarked analysis was undertaken with the data and the Accreditation panel assessed the findings.

There was significant improvement in numbers included on the register, non-cancer and care home patients, increase in uptake of ACP and DNAR discussions, development of practice protocol for sustainability and other benefits following the Going for Gold training.

By earlier identification, use of registers and routinely offering ACP discussions, more were enabled to communicate their views and preferences and early results indicated more dying at home.

Through whole-team involvement, culture change and routine systemisation of end-of-life care, significant improvements were made in these practices, with uptake of ACP discussion increasing. Additional benefits included improved confidence and development of a sustainable plan.

The 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.

A series of focus group and individual interviews were conducted with consumers, clinicians, hospital executives and policy makers at state and commonwealth level.

Themes 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.

The 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.

A formal consultation paper is being developed to test the findings and recommendations of the preliminary consultation more broadly.

An examination of whether there are policies in place for advance care planning in the various district health boards and whether they provide the opportunity for people to be involved in making advance care plans.

I reviewed the received responses from the major district health boards in New Zealand soliciting information on the availability of advance care plans or if there are any advance care plans policies in place.

There are positive indications that advance care planning is in the process of being implemented in the various district health boards surveyed, and they are carried out in specific healthcare units for the time being. Responses are still being received on an ongoing basis at the time of writing but based on the current situations, the response has been encouraging.

Although there are no formal policies in place, the healthcare providers have taken the initiatives to introduce and implement advance care plans to the public.

Advance care planning has the potential to facilitate the end-of-life care conversations and supportive programmes are being implemented giving the opportunity for the public to engage in advance care planning.

To facilitate access to evidence-based resources related to ACP and AD.

CareSearch 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.

Web 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: 10 173

For Patients and Families: 9828

RAC/GP/Nurses Hub: 12 915

Finding Evidence: 5823

Web-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.

The 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

Evidence for the effectiveness of guidelines is generally poor, and end of life guidance, based on expert opinion, broad in nature, and lacking implementation or audit strategies, fair badly. In addition, the term ‘end of life’ has no single definition, and no precise tests exist to define to whom EOL guidelines are meant to apply. As a case history, NSW Health has notched up over two decades' experience in writing EOL guidelines, and has attempted to publicise them. But it remains a reality that end of life guidelines can produce a weak justification for change, but cannot themselves produce that change.

Improving the management of dying in our institutions is crucial to the credibility of our health systems, and to stem the tide of support for euthanasia. And to achieve this we need a coherent approach with a hierarchy of needs: political will, community pressure, legal support, strategic policy, standard setting, audit, feedback and accountability. Failure to be proactive is sure to lead to pressure of all the wrong kinds, as economic imperatives come to drive urgent efficiencies in end of life care. But an important question remains outstanding: what kind of support do acute care clinicians want (or need?) Without a coherent answer to this empirical question, managing and sustaining change is likely to be beyond us.

In an ongoing Cochrane Review, we attempt to elucidate primary and secondary outcomes of ACP for ESRD patients, by evaluating not only clinical outcomes, but also outcome measures that are relevant to patients, policy drivers, and the general populace. Because such objectives are difficult to evaluate with RCTs, the inclusion of observational studies is most meaningful. Therefore, a systematic review that will include non-RCTs as well as RCTs will be conducted. Contextual factors such as quality of life, social determinants of health, and cultural values, which influence prognoses will be examined. Specific domains will be applied to grade the strength of the evidence.

Preliminary data extracted from these studies indicate that ACP is beneficial to the ESRD patient and may lower the likelihood of intractable conflicts between relevant parties. Furthermore, the inclusion of non-RCTs points to a more robust and logistically feasible analysis.

This study will add to the evidence base and will highlight the importance of ACP in ESRD. It will also lay out the rationale for conducting systematic reviews of non-RCTs, in order to adequately capture the concerns of patients, their caregivers, policy makers, and gatekeepers.

To evaluate the impact of the introduction of ACP to the Austin Hospital renal unit.

Audit of medical records for (1) 58 patients who received ACP (2010–2012) (2) 58 age and gender matched control patients (2007–2009).

The rate of withdrawal from dialysis was significantly higher in the implementation group (IG) (p=0.022), as was the involvement of the patient or family in the decision to withdraw dialysis (p=0.001). Medical decisions to withdraw dialysis was equal between groups (p>0.05) More ACP documents were completed in the IG (MEPOA=67%, SOC=27%, RTC=17%) compared to the control group (MEPOA=5%, SOC=10%, RTC=2%). Significantly more wishes were correctly documented in the IG (p<0.001) and more changes to patient management plans were observed (71%). Patients in the IG were more likely to have their wishes respected (p=0.007) and receive treatment in their best interest (p<0.001).

The implementation of ACP led to patient wishes being documented and respected, and to dialysis being withdrawn at the patient's or family's request. No difference observed in the involvement of the medical team. More wishes were respected in the IG and more patients received treatment that was in their best interest.

Facilitated ACP successfully increased the likelihood of wishes being respected and patients receiving treatment in their best interest.

To normalise the establishment of ACDs for patients in our Unit, and to have at least 80% of our renal dialysis patients with up-to-date and easily accessible ACD in place.

Project guidance was provided to the Ballina project team via the ACI Haemodialysis Models of Care Program. The project involved staff training, patient education, development of an ACD Form, and process change within the renal unit and the hospital. The process was adaptable, flexible and responsive, and staff developed confidence in addressing this difficult issue with their patients. Furthermore, a system was developed to include ACD alerts on the patient's electronic medical record (eMR), making this information available at all access points throughout the health district.

ACDs have been established as a standard component of the model of dialysis care within our Unit. As a result of the project the proportion of our patients with active ACDs rose from <5% to above 85%. There remain some difficulties broaching this topic with some cultural groups.

ACDs have the ability to prevent overuse of medical resources and decrease family burden during EOL care. During education sessions it was found that staff had difficulty approaching their patients on these very sensitive and challenging issues, and required considerable training to empower them to support their patients' during advance care planning (ACP). The successful implementation was due to the patients perceiving it as a normal process that they themselves should drive, in collaboration with their families and with their clinical carers.

ACP policies require considerable staff training and support to enable successful implementation.

To avoid possible barriers to patient choice along the dynamic course of LVSD and foster advance care planning (ACP) to better ensure patient-centred care at the end of life.

We shall describe factors potentially confounding patient choice across four domains—those linked to the disease, the patient, the clinician and to service provision. Overarching elements of risk include:

A lack of appreciation of the significance of LVSD and overrated perceptions about treatment option benefits may influence patient choice. Inconsistent study results also refute the common assumption that LVSD patients would trade-off burdensome longevity for a shorter, better quality life. Patient education and the use of discrete choice modelling may provide objectivity, promote consensus development, and facilitate ACP with appropriate treatment decisions towards the end of life.

To determine how the Australian health care system supports end-of-life care for people with advanced chronic disease and their carers and determine the suitability, availability and accessibility of care.

Using a qualitative case study methodology, nine people with end stage heart, renal and neurological disease identified as likely to be in the last year of life, were interviewed three times over 9 months. Their carers and key service providers were also interviewed.

None of the participants had discussed their prognosis with a clinician and none were supported by specialist palliative care. Participants aged under 65 years of age were more disadvantaged, particularly regarding access to ADL support. Four participants had undertaken advance care planning, at their own instigation. Service providers identified access to services, lack of advance care planning discussions and failure to recognise the terminal nature of many chronic diseases, as key issues.

Lack of clarity around responsibility for care planning and co-ordination of end-of-life issues meant participants did not have the opportunity to discuss their care needs and frequently did not access appropriate services.

The Australian health care system is compartmentalised, with a lack of coordinated, practical policy and service delivery responses acting as significant barriers to best practice end-of-life care

To present a narrative of the factors, internal and external to the hospital, that have had to be considered and worked through, to develop a programme in care planning for advanced care at St. Vincent's Hospital Melbourne that has gained acceptance and led to implementation to be embarked upon.

Review of the Advanced care planning working group's meeting minutes actions and document developments taken over 8 month period June 1 to December 2.

The process demonstrates the key steps in the 18 month timeline that has brought significant points of development to create a workable and viable policy and guidelines, acceptable within a Catholic hospital's ethical and clinical framework

Sharing the learning's will be helpful for others developing programmes in comparable institutions to see how important the linking together of key people and committees in an organisation is to develop the acceptable shared understanding and language within the institutions ethical and clinical framework.

Setting aside historical challenges, it has been possible to develop a system of advanced care planning processes within a Catholic, faith base, tertiary hospital.

To develop an ethno-specific Advanced Care Plan that takes into account government guidelines and is respectful of religious imperatives guiding end of life care.

Utilising an external survey and an internal interview process, statistical data and results were collected identifying a gap between a cultural imperative and present contemporary thoughts of the dynamic community we serve.

A person-centred advanced care has was developed to enable our ethno-specific organisation to support residents/clients and their families with care that meets their needs whilst also providing support within a Jewish ethical framework. This new model has successfully bridged the gap between cultural imperatives and respecting individual resident and client choice.

We have found that this new model overcomes the boundary of confliction and assists to alleviate many if not all fears and uncertainties pertaining to accommodating residents' and clients' personal wishes regarding their future medical preferences and end of life care.

It is proposed that the model developed by Jewish Care Victoria may be helpful for other ethno-specific organisations facing similar challenges regarding a conflict between respecting individual wishes within a national secular framework, whilst having regard to ethnic-religious guiding principles.

Interpreters involved in end of life and organ donation situations need to feel supported in their role, to be familiar with the terms and concepts associated with end of life and organ donation, to have some understanding of the organ donation process and to have considered their own attitudes to, and assumptions about end of life and organ donation.

This DVD highlights the multiple conversations on end of life and organ donation that occur in the emergency department and in the intensive care unit (breaking bad news to families, futility of treatment and withdrawal of care, the very personal lifestyle questionnaire, the organ donation consent process). A number of CALD actors portray families participating in these conversations.

Segments of difficult and sensitive conversations are highlighted eliciting a range of family responses. Experienced interpreters provide tips on the successful and effective utilisation of the interpreter when conducting face to face conversations and conversations through the Skype medium.

Information on end of life and organ donation processes is provided in a logical and contextual format

This DVD is a suitable educational tool for all people involved in end of life and organ donation situations—interpreters, pastoral care services, social work, nursing and medical staff.

To explore perceptions of ACP among older, non-hospitalised first-generation Dutch-Australian and Italian-Australian migrants.

Twenty-nine people participated in individual interviews (N=16) and focus groups (N=13). Average time residing in Australia was 52 years. Most participants were proficient in English; some Italian participants preferred to speak Italian and utilised interpreters. Interviews were recorded, transcribed verbatim and thematically analysed.

Pre-migration experiences, reliance on ethnic community support networks and continued contact with the native country contributed to migrant identity, which influenced attitudes towards ACP. Dutch participants typically adopted an individualist approach to medical decision-making, whereas Italian participants associated more with a familial style. Mistrust towards institutions was often associated with less support for ACP. Discussions about ACP elicited unprompted views on euthanasia, particularly among Dutch participants. Participants with poorer English language skills showed similar openness to considering ACP when supported with appropriate language assistance.

An individualistic decision making style was associated with openness to ACP. Familial decision making styles and the presence of ethnic community support networks were associated with a view that ACP was redundant.

Ensuring informed access to ACP for migrant Australians will require appropriate language assistance, understanding the patient's social history and framing benefits of ACP within the broader context of decision-making styles and reliance on ethnic community support networks.

To discuss and practice three core communication skills needed to discuss goals of care with seriously ill patients.

Discussion and role playing in small groups

The session will focus on how to assess a patient’s values and then make a recommendation based on those values. The key skills involved include: 1) attending to patient’s emotions; 2) using the patient’s emotions to explore a patient’s hopes and concerns; 3) asking for permission to make a recommendation; and 4) making a recommnedation by "showing one’s work".

Skills needed to have discussions with seriously ill patients about their goals can be taught.

To review the need for, the benefits and implications of expanded FAQs.

The FAQs at programme commencement were compared with the FAQs by December 2012. Volunteers were interviewed regarding the FAQ development.

The expansion of the FAQs was driven by consumer demand at Information Sessions; 18 broad questions were not satisfactory. The 92 questions (not all asked at each session) could be grouped into themes. Themes included: Role of the GP; Conflict; Competency; Legal Issues; Organ Donation; ACP in Critical situations; Euthanasia; Dying with Dignity, Religion and ACP. The attendee feedback regarding the sessions and questions was very positive; 94.2% of 309 attendees agreed/strongly agreed that their questions were answered; 96.8% agreed/strongly agreed that the presentation increased their ACP knowledge.

The FAQs were expanded to meet community expectations about information provided at the sessions. The benefit of expanding this list was that new Volunteers would be aware of the type of questions that would be asked, and that consistent answers could be provided. The implication is that Volunteers providing information to community groups need to have detailed knowledge of the entire ACP process.

Expanded FAQs required very specific responses, provided greater satisfaction and meant that Volunteers needed high level knowledge of the ACP process.

To produce a consumer driven DVD on ACP that can be utilised as a marketing and education tool for consumers, health care professionals and community groups.

Five consumers and carers were recruited and went through a consent process to participate in the DVD. Each person was chosen because of their unique background to illustrate a variety of experiences such as caring for someone with dementia and making difficult decisions for someone who is dying. The interviews were unscripted which allowed for a natural flow of information.

The DVD will be showcased on the Realtime Health website in their ‘Speaking form Experience’ series, which comprises an extensive database for a range of illnesses/health issues which is easily accessed by Health Care Professionals and the general public. Alfred Health will have video clips inserted onto the ACP internet and intranet pages and this will be utilised as client, staff and community based education.

Hearing first hand accounts from real people that have lived through an experience is powerful and thought provoking. We hope to motivate individuals to consider doing ACP for themselves.

Debunking myths about death, dying and the meaning of Palliative Care.

Patients and family members were interviewed to explore how they have come to understand how the clinical and non-clinical needs of their family members are met.

Student Victoria reflects on her experiences ‘I could use the clichéd phrase "it changed my life, but in all reality, it did so much more than that. I learnt that hospitals do not have to be places that are starch-white and unfriendly nor do doctors and nurses have to be people to fear. I learnt that courage is an intangible, amazing force that comes from the most unlikely people and places. I learnt that death does not have to be feared; especially not when it could be embraced. I learnt that it is possible for death, the end of someone's life, to be a celebration; a celebration of the life that has occurred rather than the death itself...Finally, I learnt to see past the physical or intellectual disabilities and see the person who is inside. The courageous, friendly, funny, intelligent, remarkable person that they truly are".

The students, their families and the school community have a new understanding of Palliative Care.

This process can be taught to other health care providers—it will create changes in thinking in the community.

To investigate trends in ACP completion for the RAC population presenting to ED, by comparing data from 2009 to 2011; the proportion of patients with ACPs in place; whether ACPs were acknowledged and complied with by hospital staff; and whether current strategies have improved ACP implementation and compliance.

A retrospective cohort study of 79 patients from RAC who died during hospital admission in 2011 was compared to a similar group of 90 patients in 2009.

The median age was 87 for both groups. Time from admission to death was shorter in 2011 (median 3.9 days, IQR=1.3–6.4) compared to 2009 (median 4.3 days, IQR=1.7–8.2). The proportion of patients with ACPs in place had doubled from 13% in 2009 to 29% in 2011 (²=5.448, df=1, p=0.02). Improvements were seen in the number of patients for whom ACPs were acknowledged or adhered to. The proportion of patients transferred from RAC who died during that admission was lower in 2011 (6.2%) compared to 2009 (7.3%).

More aggressive discharge planning of dying RAC patients by the palliative care team has resulted in fewer than previous deaths of RAC patients in acute beds and shorter length of stay.

Overall improvement in ACP implementation and compliance has resulted in improved patient outcomes.

This presentation will outline the new workforce model to be developed through the Living Well Dying Well project. Key objectives and examples of case studies will illustrate how:

Outcome Mapping is being used as a change management tool and a developmental evaluation methodology to assist Southern Cross Care to successfully implement the Living Well Dying Well project. It ensures a logical, participatory and reflective set of steps so as to address the complexity of the project in the context of RAC.

The 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.

The 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.

At 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.

To 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 LTC

Using 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.

The 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.

An 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.

The presentation is going to highlight the challenges faced and the approaches used in order to put patients' words into action in individualised therapeutic plans.

The presentation will be addressing the main features of the service provided and highlighting how patients' words were used to develop therapeutic plans to help in improving the psychological state of cancer patients. Practical examples and case studies will be provided.

The presentation will show qualitative results of the impact of occupational therapy approaches used on the quality of life of cancer patients and their families.

The presentation will discuss the importance of individualised therapeutic plan which were based on patients' needs and expectations. Moreover the unique effect of these plans will be highlighted due to the satisfaction attained by the patients regarding the quality of care given.

The presentation will pose the following question: if the care planning is based on the needs voiced by patients' words, how can we effectively listen to cancer patients? And, How can we use this technique to improve the quality of care planning?

To determine the frequency of end of life care relative to other common interventions delivered by METs.

Two authors independently searched for potentially relevant studies. We included prospective studies that reported activities undertaken by the MET. The suitability of studies for inclusion and validity of studies was assessed independently by two authors. We extracted data on the characteristics of the included studies, the composition of the MET and the activities undertaken by the MET. The primary analysis was descriptive.

Preliminary results are presented. The search identified 2324 abstracts, 99 articles were retrieved for full text review, 32 studies were included. Rates of end of life interventions performed by the MET ranged from 2% to over 20%. These rates are similar to many common interventions performed by METs.

End of life care is an important component of the work carried out by the MET and is carried out at a frequency similar to many interventions that are given more weight in MET training.

Training to deal with end of life care should be incorporated into all MET training.

To improve uptake of ACP amongst healthcare professionals in WA Health.

An ACP Chronic Disease Reference Group was established to provide leadership of the project. Interviews were conducted with reference group members to identify the barriers to ACP and identify patient groups who would benefit. A literature search was undertaken to identify prognostic indicators and issues relevant to target patient groups. These outputs were assessed against a multidisciplinary panel of stakeholders and the ACP reference group.

Chronic heart failure, chronic lung disease, renal disease and neurodegenerative conditions were identified as priorities for additional ACP resources. Specific and general prognostic indicators were identified which could act as triggers for initiating ACP conversations. Medical and lifestyle considerations relevant to specific conditions were identified and discussion prompts provided. Finally, guidance regarding documentation and dissemination of the outputs of these discussions was considered.

A guide on its own as a resource will not drive a culture change within health. A model of ACP, consistent with national and international literature, and acknowledging the barriers to ACP is required.

To address issues in communication and education, an ACP model which assists in the identification of patients who may benefit from ACP and issues relevant to those with chronic diseases has been developed.

To describe the processes undertaken to engage key stakeholders with ACP.

A total of 16 h was spent over a 3 week period to facilitate completion of the advance care plan. Of this 7 h were spent with the family, the remaining 9 h were spent in meetings with key stakeholders and at the group home to support his carers. Communication, time and sensitivity were required for both the family and key stakeholders.

An ACP was completed. During this process significant learnings were identified in terms of the intense emotional connection some health care providers working in the disability sector hold along with the differing views of the multiple health professionals involved within this case.

This case identified that the disability health care providers are also effectively ‘family’ which was unexpected. The diagnostic uncertainty added to the duration of discussions. Areas identified as needing further clarification and discussion included defining slowly dying, ACP and how to enact and follow a plan.

Defining strategies for ACP within this population requires further work. However we recommend allowing for an extended period of time to raise awareness, educate and most importantly develop trust and rapport with group homes and disability advocates.

This study aimed to examine issues influencing the decisions of people with advanced medical conditions.

Case study methodology was used to inform the design of the study in two phases. Firstly, chart audits informed development of cases discussed in interviews. A purposive sample (n=20) with experience in advance care planning at end-of-life including health professionals, community leaders, patients and carers were interviewed. The study was conducted in a metropolitan health service.

Results indicate that advance care planning takes place in decision-making moments. The readiness of those involved in decision-making to either commence planning for end-of-life care or to implement a plan at end-of-life to provide for care needs were factors. End-of-life care planning and action occur in a context of difference (people, place and tensions).

This study suggests that, whether advance directives are available or not, towards the end of a patient's life, clinical decision-making is often in response to issues that may not have been predicted or discussed in the planning phase. Health professionals and family members may be ill-equipped to engage in discussions, despite the presence of an advance care plan. Policy, education and resources need to support the necessity for in the moment decision-making.

This project was funded by the National Health and Medical Research Council of Australia Palliative Care Program Grant.

This paper aims to clarify ideas of success in ACP in order to make sense of the disagreements.

Literature review and critical reflection

ACP is promoted in pursuit of a combination of utilitarian, libertarian and/or compassionate aims and notions of ACP success vary considerably. In the empirical literature success either refers to successful programme implementation, the achievement of an ideological good for a patient or both. A historical evolution of types of success criteria is evident and ambitions as to what constitute adequate markers of success are diverse.

As a complex multidisciplinary field ACP provides a fertile ground for partial successes and failures. A particular problem is that addressing shortcomings in one area can often only be achieved by reducing ambitions in others, leading to a dynamic shifting of ACP goals. Criticisms from one discipline are evaded through discipline specific research design or via different discipline specific goals and ambitions.

Whether ACP is seen as successful depends on how many and which goals ACP is meant to address at once. Although modern ACP has made many practical advances, it has done so at significant cost elsewhere and certain criticisms remain relevant.

To review the evidence that supports a co-ordianated approach to ACP.

This presentation is a systematic review of the evidence that informs our approach to ACP in primary and secondary health care settings

The evidence to support a comprehensive, tailored approach to identifying patients who might benefit from ACP, an approach to symptom management and carer support in a primary health care setting with appropriate co-ordination with specialist palliative care will be presented.

Only 4% of decedents do not have an the Emergency Department (ED) Presentation in the last year of life. The trajectory of chronic illness and co-morbidity determine that ED presentations provide the opportunity to identify patients who might benefit from ACP how can this inform our approach?

Advance Care Planning has been associated with improved patient outcomes. The suggested approach supports the aspiration to Plan EARLY, and identifies appropriate target populations and outcome measures.

To 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.

ACP 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.

Over 450 facilitators have been trained. Pilots are on-going in five public hospitals, in departments such as Palliative Medicine, Cardiology, Oncology and Respiratory Medicine.

With 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.

In tandem with the growth of ACP at acute and community settings, greater engagement and empowerment of providers and the public must also happen.

To assess the current status of organisation, actual practice and possible improvement of AD-consultation in Germany and thereby the need for structured ACP-programmes.

A pilot study using a written questionnaire (Likert-Scale) completed by 33 consultants participating in a follow-up meeting of a Bavarian Hospice Academy.

A 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.

The 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).

It underlines the need for more comprehensive ACP-programmes.

A reference group was conducted that emphasised the need to produce something relevant to the needs of community palliative care clients. Staff expressed the desire for a ‘kit’ of resources that could be utilised according to client need.

Following extensive research and consultation with other services, a Resource Kit was designed.

The Kit contains a staff guide; information brochure; conversation tools; legal forms and Statement of Wishes form.

The conversation tools include the Coda Alliance ‘GoWish cards’ and EPC's ‘My Values, My Wishes prompt booklet’. These tools can be a less intrusive way of facilitating sensitive conversations.

The Statement of Wishes form was designed to ensure clients' psychosocial and spiritual needs are included at the onset.

EPC's ACP Resource Kit is a unique and innovative step forward in facilitating ACP with palliative clients, by incorporating aspects of care that are most important to them. A recent staff evaluation after 6 months in use, indicated that the kit ‘opened doors’ in assisting client's to reflect on and communicate things that they previously were unable to do.

A pilot study for the feasibility of basic ACP for patients with mild heart failure.

Patients were recruited from a heart failure clinic over a 4 month period if they are in New York Heart Association class I/II with no readmission in preceding 6 months.

Of 58 patients, 83% had formal ACP while 17% declined to participate. Mean age was 57 years with predominance of male (72%). Ethnic distribution followed the national demographic (84% Chinese, 9% Indian, 7% Malay). The participation rate among the different ethnic groups were 86% for Chinese, 100% for Indians and 25% for Malay. For the participants, 90% had more than one ACP session with a mean duration of 60 min per session, and 17% had completed the ACP forms upon enrolment of the last patient. Significant challenges faced were low awareness of ACP among patients and caregivers as well as need for coordination across multiple disciplines.

There is a high acceptance of ACP among patients with mild heart failure. But there is a disparity in the attitudes of different ethnic groups towards ACP where Malay are less willing to discuss it compared to Chinese and Indian.

Our study highlights the feasibility of implementing ACP in South East Asian patients with heart failure, and the need for further research on the observed impact of ethnicity.

Primary objective is estimate preference of advance care planning acceptance among community dwelling older persons with multiple medical problems. Secondary objectives are : to estimate end of life care preference as listed and potential factors affecting their choices; whether there is difference in view of older person's choice in comparisons to their next-of-kid

A Multi-centre, cross sectional survey using a structured, interviewer administered questionnaire.

Older persons with age >6, fulfilling the inclusion criteria, who attend Geriatric out-patient clinic or Day Hospital in the study period, and their paired next-of-kin are invited to participate.

4 out of 7 centres have preliminary results available (see table)

High acceptance of advance care planning in the interviewed patient (78%) and carers (79%).

Marked difference in views are observed in artificial feeding, pain management and use of antibiotic.

Further analysis to address the difference observed is planned. Territory wide public education and promotion on advance care planning is needed.

To develop a resuscitation planning tool which would facilitate the process of clinical assessment, encourage communication with children and their families and subsequent documentation of mutually agreed upon resuscitation plans.

A working group used the adult ‘Adult Resuscitation Plan’ to determine the key components required for a clinical form which related to the care of patients aged less than 18 years.

The ‘Paediatric Acute Resuscitation Plan’ (PARP) included the following sections: clinical assessment, resuscitation management plan, consenting details, and clinical authorisation.

The resuscitation management plan acknowledges that patients may still benefit from a range of treatments and therapies that contribute to quality end-of-life care. At the same time, the form clearly documents whether cardio-pulmonary resuscitation will or won't be provided. Consent is usually given by the parents who in usual circumstances act in the best interests of their child. The form also encourages discussion and consideration of the views of the Gillick competent child.

The development of the Paediatric Acute Resuscitation Plan (PARP) is a clinical form and tool which allows consistency of practice on a statewide level but also allows flexibility to document a unique care plan for each child or young person.

To implement and evaluate the LCP in acute wards in EH.

Wards with the highest numbers of deaths were identified.

After consultation, the LCP was implemented.

Surveys of staff were carried out before and after implementation.

More than 200 patients and families have been cared for on the LCP. Some patients were discharged back to residential care and some to palliative care beds.

Only 9% of the 88 surveyed staff who had used the LCP felt that it had not helped improve the care of dying patients and families in EH, and 6% of staff felt that the LCP had not helped staff in caring for dying patients.

Staff feel that the introduction of the LCP improved end of life care at EH.

Use of LCP did not prevent transfer from acute beds to specialist palliative care beds.

To identify the quality of care for dying patients as documented in ECP and benchmark our performance with the National Care of the Dying Audit—Hospital (NCDAH) 2009 in UK.

A retrospective audit design was used to gather ECP data from Tuen Mun Hospital from 1st August to 31st December 2010.

117 deaths occurred in the audit period and 42 ECP was applied. Median Age is 80 (IQR=75–85); 55% are female; 79% are non-cancer patients. The most common diagnosis is end-stage renal failure. The median duration in ECP is 62 h (IQR=18–103). A high percentage of patients and carers can participate in the communication (95.4%, 95.2%), aware the dying status (88.9%, 90.5%), have the current interventions reviewed (100%), and symptoms controlled (range from 85.1% to 90.5%).

Relatively low percentage of the patients and cares could discuss about their spiritual needs (77.3%, 78.6%), have the anticipated symptoms control medications prescribed and received (71.4%, 36.7%), pathway explained (83.3%, 54.8%) and physically adjusted environment received (76.2%). The comparison of the results with the NCDAH 2009 was shown in table 1.

This audit point out different aspects for improvement of the ECP first applied in non-cancer medical unit in Hong Kong

To understand caregivers' perspectives about ACP in relation to potential limitations, barriers, and facilitators of communication that may exist between patients and themselves.

Constructivist 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.

Eighteen 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.

Caregivers can be conduits through which hospitals can assist oncology patients to approach ACP.

This 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.

To (1) Analyse a variety of palliative resources to identify the pharmacological management of common symptoms in the terminal phase; and (2) Create an end-of-life Core Medicines List that guides consistent prescribing for noncomplex community palliative patients in the terminal phase.

Seven stakeholders representing all consultant-led palliative services in South Australia discussed the management of five common symptoms observed in the terminal phase of a palliative illness. The selection of the core medicines took into consideration cost, availability in the doctor's bag, access to government subsidies (eg, PBS) and drug properties.

The five end-of-life core medicines selected for noncomplex community patients are:

There is some overlap in the symptoms which these medicines control, thus allowing some options despite the restricted list.

A concise end-of-life core medicines list of five medicines has been developed to guide prescribing by community clinicians.

We assessed available design guidelines in Victoria, NSW and South Australia against 312 peer reviewed papers from the fields of sociology, gerontology and neurophysiology and architecture.

A growing body of evidence supports the hypothesis that the design of aged care environments has a direct impact on the experience and treatment of dementia patients and also on the well-being of staff. Australian design guidelines however are aspirational, problem-focussed and lack detailed reference to this evidence-base.

Available evidence can radically improve current design guidelines; however it must be recognised that the data has primarily come from non-randomised, short-term research projects.

Co-ordinated, longitudinal and randomised research is required to continuously improve the evidence base. We contend that this paradigm shift can only occur if stimulated by aged care providers and integrated into architectural practice.

This paper aimed to systematically review original studies of quality of EOLC and appraise their quality.

Only the original Studies that concerned on the quality of EOLC were included. Words like quality of EOLC, quality of dying and death were used to search in Midline and Ovid online data bases.

Forty-nine studies met the selection criteria. These 31 quantitative, 16 qualitative and 2 mixed method studies identified different level of satisfaction to the quality of EOLC.

The quality of EOLC still need to improve and barriers such as communication, lack of education and experiences, pain management, high expectations of families and environmental circumstances stile hindered the quality of EOLC.

different studies were conducted using different measures and methods to understand the quality of EOLC; however, further studies to identify the best strategies to improve EOLC are needed.

The provision of Intensive Home Care Nursing services for Patients and Families who wish to die at Home, with a holistic focus on Patients and Families needs. Furthermore, Intensive Home Care is a cost effective model compared to the provision of Hospital ICU services

The provision of Intensive Home Care Nursing services for long-term ventilated Patients with Tracheostomy and their Families as a genuine alternative to ICU. This model is based on the service provision of an accredited Australian Intensive Home Care service provider. The service model is based on successful Home Intensive Care services in Germany.

Quality of end of Life for Patients and their Families in their own home as a genuine alternative to ICU, as well as cost effectiveness and effective resource management for ICU's

Using a dedicated and accredited Intensive Home Care Service provides Patients and their Families with a genuine alternative to Intensive Care whilst also freeing up expensive and scarce ICU beds.

Considering more people want to die at home if given the choice, in combination with the continued high demand for scarce and expensive ICU beds, Intensive Home Care services are a genuine alternative for the provision of Quality of end of Life services for long term ventilated Patients and their Families.

To explore the way that the process of advance care planning can become part of family and community life.

While advance care planning is often focused on medical treatment decisions, for example, resuscitation, in reality such planning is more about values and goals of individuals. As such, it has as much to do with fundamental beliefs, obligations; relationships; and values as it does about information regarding a treatment. It is coming to a fuller and timely understanding of these aspects of an individual's life that the goals of medical care and the treatment decisions get shaped. In this regard advance care planning is a human activity that involves relationships and activities like religion and culture. Such conversations belong as much in the community as they do in the hospital. This broader approach, however, is not well understood by the larger community nor is it fully trusted. To have a highly successful advance care planning approach requires the engagement of a wide variety of organisations and institutions from the community. This presentation will explore effective methods of such engagement and consider how it improves outcomes.

Review the referral process for children to the Queensland paediatric palliative care service from PICU.

Using our electronic chart system we identified 54 patients who had been referred to the palliative care service since 2008. Using thematic analysis we reviewed who initiated discussions, what patient descriptors were associated with referral, common themes and outcomes.

The majority of children referred had complex medical needs. PICU referral to Palliative Care introduced a greater focus on quality of life and the concept of limiting aggressive care.

PICU is often viewed as an acute medical environment and not one where palliation discussions for complex long term patients occur. However we found that due to the critical nature of PICU it is often time for a holistic review of the medical history; child and family goals and a focus on quality of life.

The PICU team have extensive experience in talking about end of life issues and are ideally placed to work with the Palliative Care Service to initiate referrals, enhance management of subsequent crises and maximise quality of life in PICU and on discharge.

Investigating the experiences and needs of both the facilitators and the recipients of ACP.

We conducted 17 semi-structured interviews with experts in the care of severely ill children and adolescents. Interviewees were from different professions, settings and institutions. The interviews were evaluated using inductive categorisation and thematic comparative analysis.

Pediatric ACP concerns all care providers. Particularly important issues are: An interdisciplinary care conference, repeated discussions with the parents, a continuous point of contact as well as emergency planning. Advance directives (AD) should be individualised, validated by the treating physician (shared decision making) and be available. Perceived challenges are: Parents' reluctance to think ahead, uncertain prognoses and uncertainty about involving the child. Conflicting interests exist between emergency physicians who are uncomfortable with accepting a child's AD when they are called in, and non-medical providers who are uncomfortable with accepting an AD without the verification by a physician.

This is the first European study that investigates the perspective of professionals on pACP. There is a need for pACP, but the perspectives differ between care providers.

This study helps in understanding the needs of the different care providers as well as barriers to pACP.

To determine if spiritual beliefs, religious practices or religion are correlated with treatment preferences for end-of-life (EOL) care among adolescents with HIV/AIDS.

Adolescents (N=53) aged 14 to 21 were enrolled in a 3-site, controlled, randomised clinical trial. Data were collected between 7/2011–10/2012. FACE-ACP consists of weekly, 60-min sessions: (1) Lyon Advance Care Planning Survey©; (2) Respecting Choices Interview; (3) Five Wishes©. Measures were Brief Multidimensional Measurement of Religiousness/Spirituality and Statement of Treatment Preferences. Six subjects had missing data.

Mean age was 18 years; 57% male; 94% African-American; 74% perinatally infected. In Situation 1 (long hospitalisation, low chance survival) 53% of adolescents reporting religion and 100% of non-religion group chose to continue treatment (p=0.0317). In Situation 2 (physical impairment) 74% of adolescents who ‘felt God's presence most days’ chose to continue treatments; 45% who did not ‘feel God's presence’ chose to continue (p=0.0426). In Situation 3 (mental impairment), there was no significant associations. Combining the three situations, 28% of religion group choose to continue treatment; 71% of non-religion group chose to continue (p=0.0364). Belief in miracles, HIV is a punishment from God, feeling abandoned by God, religious practices were not associated with treatment preferences.

Religious beliefs were associated with decisions to continue treatment, depending on the situation. These data begin to fill the gap in understanding the complexities of the influence of spirituality/religion on treatment preferences.

This research aims to evaluate the practice of resuscitation planning at a major tertiary children's hospital.

A list of patients who had died in 2011 was obtained from medical records. We collected information regarding parental demographics, patient diagnosis, the scope and timing of discussions and treatments/limitations to treatment, which were felt to be appropriate. The location of the documentation was also recorded.

Of the 45 patients identified, 35 charts were available. 28 individuals had a condition carrying a poor prognosis or life limiting condition. In seven cases, death was unexpected. In 24 of 28(85.6%) charts a discussion was documented regarding end of life cares. However, only two (8.3%) of these were readily identifiable. In two cases, discussions were held more than 12 months before the child's death. When adjusted to exclude these variables, documentation was dated on average 35.6 days before death.

Patients of the Royal Children's Hospital with a life limiting condition had a documented resuscitation plan 85.6% of the time. However, this was not easily identified in 91.7% of cases. The timing of discussion varied considerably in relation to the time from resuscitation planning to death and the scope of discussion.

The sensitive and timely discussion of end of life cares should be undertaken and documented clearly and with a consistent manner in order to facilitate communication between all health care professionals providing care for the child. This study has identified considerable room for improvement at our institution.

To implement and evaluate the LCP in acute wards in EH.

Wards with the highest numbers of deaths were identified. After consultation, the LCP was implemented. Surveys of staff were carried out before and after implementation.

More than 200 patients and families have been cared for on the LCP. Some patients were discharged back to residential care and some to palliative care beds. Only 9% of the 88 surveyed staff who had used the LCP felt that it had not helped improve the care of dying patients and families in EH, and 6% of staff felt that the LCP had not helped staff in caring for dying patients.

Staff feel that the introduction of the LCP improved end of life care at EH. Use of LCP did not prevent transfer from acute beds to specialist palliative care beds.

To implement ACP within Wanganui region and gain sector-wide engagement and coordination (integration).

The 6 month pilot trialled the National ACP tools in primary and secondary areas; General Practitioner practice; Maori patients in a medical ward; Assessment Treatment and Rehabilitation Service; Aged Residential Care Facility. Clinical staff in the pilot areas had ACP conversations with elderly participants. Clinical staff raised ACP awareness with the general public.

Of the 82 participants, 75% were interested in continuing ACP conversations (verbal and/or documented) with appropriate people for example, family/whanau; health professionals; lawyers. The pilot evaluation and recommendations identified several key areas, including outcomes and challenges that are being addressed collaboratively across the sectors. These are forming the basis for a Wanganui district wide application of ACP, that are in align with national and regional directions.

An integrated approach has been a successful way to introduce ACP to Wanganui region stakeholders, and has enabled significant progress in a short period of time.

Findings to-date, indicate the Wanganui pilot supports an integrated approach for ACP across the specialist; primary and community services, with a common vision, shared processes and systems to improve end of life health care for the elderly.

Whilst research continues in regard to the development of electronic Advance Care Plans in the palliative care setting and residential aged care setting, there is a need to understand the relevance and practicality of developing Advance Care Plans for use by elderly people living with life-limiting chronic illnesses in the community.

Seventy-one papers resulted from the search strategy with 17 papers selected for review. A meta-analysis and meta-synthesis has informed our proposed model for electronic Advance Care planning in the community—the Dignity of Life Model (a person-centred and dignity of life focussed approach). Interview data will inform the relevance and practicality of this proposed model.

This research will assist to understand the relevance and practicality of developing an electronic Advance Care Plan (eAPC) for use by elderly people living with life-limiting chronic illnesses in the community.

Provide guidance on a model for electronic Advance Care Plan (eAPC) for use by elderly people living with life-limiting chronic illnesses in the community.

To engage identified patients in First Steps© and Last Steps© TACP.

CMs were trained and certified by Respecting Choices© to facilitate ACP discussions telephonically with both First Steps© and Last Steps© protocols. CMs identified appropriate patients using hospitalisation and emergency room utilisation data, severity of illness and diagnostic criteria. The primary goal was to complete both the ACP discussion and document for each protocol on identified patients. CMs also attempted to schedule facilitated conversations with the health care advocate present.

In one calendar year, 155 patients were identified for TACP using established criteria. 59% indicated they had an existing document identifying preferences for medical care. 35% declined TACP. Last Steps© discussions occurred in 15% of the patients. TACP resulted in eight new or updated documents.

Following TACP implementation to the Medicare CM team and evaluation of the results, processes and methods were instituted to increase engagement and completion of discussions and documents. These included enhancements to the electronic assessment and ongoing support of the CM team to increase engagement of patient and advocate.

Dissemination of the project to the entire Medicare CM team demonstrates opportunities and lessons learned for facilitated TACP discussions.

To evaluate whether a regional ACP programme leads to improved end-of-life outcomes, judged from the patients' perspective, and saves resources at the same time.

Endpoints: Reduction of hospital days during the last 3 months of life (primary), increase of nursing home as place of death, improvement of quality of life during end-of-life period (as judged by bereaved relatives), and congruence of factual medical treatment in the last year of life with documented advance care plans.

All long-term care residents dying within 2 years study period PLUS all long-term residents deceased within 3 years before the study period in in the two post-intervention nursing homes, compared with a corresponding sample in two structurally similar control homes. 250 deceased residents per group are sufficient to demonstrate a reduction of the average number of hospital days from 5 to 3 days with a power of 80%.

Two-sided permutation tests for each endpoint, extended by statistical modelling.

Demonstrating relevant effects of regional ACP programmes on clinical outcomes is methodologically challenging, but possible and necessary. This study protocol has been proposed to the German ministry of education and research in 11/2012, the funding decision is pending.

To conduct a national survey on staff knowledge and attitudes, and policies and practices regarding CPR in Australian RACFs.

An online survey was distributed to Australian RACF managers to examine the above.

Of 541 RACF managers, only 19% agreed that CPR should be initiated in a witnessed cardiac arrest yet 83% reported that their facility would provide CPR. However, no CPR was administered in 75% of the facilities in the last 12 months and only once in 15%. Only 63% of facilities had a CPR policy and, of these 44% believe that the policy is inadequate. 98% agreed that it is important to discuss resuscitation status with the resident or family, 96% agreed that a resident CPR plan would help to reduce staff uncertainty and 82% supported the introduction of government CPR guidelines. 75% of respondents believed that survival rate of CPR in RACFs is <10% and 35% (correctly) that survival is <2%.

CPR policy and practice is highly variable between RACFs in Australia, is inconsistent with the recognised outcomes and does not always reflect managerial attitudes and beliefs regarding CPR.

The development of a national CPR guideline in Australian RACFs, and provision of education, will assist services in providing consistent and appropriate CPR practices to residents.

To highlight the importance of ACP, relationships with the hospital discharge team and community multi-disciplinary teams and how it successfully prevents inappropriate delayed discharges back to the care home setting.

We reviewed hospital admissions over the last 2 years, including who had an ACP, the interactions between the care home with the hospital, the length of hospital stay, and an audit of the feedback received from relatives and residents.

Also looking at more recent work providing ‘step up’ and ‘step down’ beds to support a local district general hospital and how having an ACP in place benefits patients.

This review is on-going (will be completed by end of March 2013) but early results suggest that where an ACP is in place the resident returns to the care home more quickly and both resident and family are more satisfied with the episode of care.

Challenges in the practicalities such as extracting information from different teams of professionals involved in the resident's care. The importance of building positive relationships with hospital wards and discharge teams.

Ensuring correct documentation re ACP goes into hospital with resident.

The benefits of developing good cross boundary relationships with hospital teams and the importance of ACP helping prevent delayed discharges.

To assess the current levels of ACP implementation including the degree of variation from the RPC model of evidence-based practice in the aged care sector.

30 participating RACFs underwent a comprehensive survey conducted via interview and a random 10% sample health record audit to collect data. Data was collated and graphed across 30 domains of enquiry into ACP practice.

The survey revealed a state of broad variance in how ACP is implemented and practiced. Only 21% indicated they routinely invite the resident to participate in ACP discussions. 20% of audited health records showed any evidence of the resident's involvement in ACP and only 41% had evidence of a substitute decision maker. Only 24% files evidenced recording of medical end of life care wishes (figure 1).

Figure 1

Significant gaps were identified in the nature and content of discussions undertaken and in the recorded level of involvement enabled from residents or their representatives.

This study reveals that Aged Care Facilities need significant support to enable a transition to best practice in ACP.

To present the development of the Think Ahead project, an Irish public awareness initiative and system to guide people in discussing and recording their preferences.

Resources, including a Think Ahead form and website (www.thinkahead.ie), have been developed. A wide range of consultation processes have been engaged in with members of the public as well as professional organisations and State agencies.

Two GP pilots were carried out, involving 120 patients up to 70 years of age, which looked at the people's experiences in filling in the Think Ahead form. Two regional community pilots were also conducted in 2012.

Think Ahead has been very positively received by the public and health professionals. The majority of people in all age groups considered Think Ahead to be a welcome initiative, in particular in its capacity to initiate conversations with family members who may be ill or dying. GPs reported that the tool had enhanced their relationship with their patients and reduced the potential for family conflict in relation to a person's wishes.

The presentation will address the learnings of the public consultation and the pilots in relation to attitudes among the public to discussing preferences around end of life.

To develop an online, interactive facility, accessed through the OPA website, that guides participants to consider their important criteria when choosing substitute decision-makers.

We established a collaborative partnership with Associate Professor Jeanette Lawrence, Psychological Sciences, University of Melbourne. A/Professor Lawrence contributed psychological expertise on drawing out values and beliefs without bias and using stories as a vehicle to do this. She works with a team of graphics and programming experts who translate these ideas into computer programmes. A steering committee met regularly to develop the programme, which was subsequently trialled with 40 participants.

The programme was launched on the OPA website in October 2012. In addition, the programme has been produced in CD format to broaden accessibility.

This tool assists in effective planning for the future through the appointment of appropriate representatives.

Feedback indicates that the programme succeeds in getting people to think about criteria for whom to appoint as their representative and fills a resource gap.

The entrust-u study developed and tested an approach to ACP with older adults in rural communities that addressed guiding values, appointment of a decision maker, content of ACP discussions for healthy adults, documenting conversations and informing GPs.

Collaborative action research was conducted over three cycles of planning, action, evaluation and reflection to develop and test the entrust-u process. We tested the use of life review, ecomaps and the ‘Go Wish’ game as strategies through interviews, focus groups and analysis of life reviews with 25 older people, 7 palliative care volunteers and four co-ordinators.

25/25 older people completed a Future Wishes document, 18/25 appointed a substitute decision maker and 14/16 requested a follow up letter to their GP. All volunteers completed or re-visited their own MEPOAs and Future Wishes documents. We developed and refined a volunteer training module to be included in the Palliative Care Volunteers Kit that included a Train the Trainer process and a manual for coordinators of volunteers.

Discussions on preparation for death require a range of strategies and tools. We worked collaboratively with rural community palliative care services to initiate discussions on facing death and ACP through a three-stage flexible structured interview process.

Entrust-u used a variety of tools and strategies to successfully involve palliative care volunteers in conducting ACP discussions with older people.

The project aim was to develop a process and tools for the introduction of ACP within the community for people with chronic disease.

Clients with chronic disease and receiving community nursing services were invited to participate. Specific tools and processes were developed. Registered Nurses (RNs) provided clients with information and referral to the project nurse. Clients were visited at home to facilitate ACP conversation, liaising with GPs, and assist with completion of documentation where required. Data including demographics and outcomes of interviews with clients and staff were collected and analysed.

Thirty-three clients were visited and engaged in advanced care planning; 12 completed advanced health directives. Seventeen clients engaged in end of life conversations with the RN and did not require further intervention. Interviews with clients demonstrated satisfaction with the outcome. Staff highlighted concerns with delivering the information relating to personal discomfort and professional capability. Tools and processes for community ACP were developed with recommendations for sustainable implementation.

The evaluation highlighted client and staff recommendations which include staff education and change management processes required to align culture and meet client needs.

This project has been effective in highlighting the role of ACP within a large national primary health care organisation, and understanding the requirements of sustainable and systemic implementation.

Describe a non-traditional, and replicable, approach to ACP that has proven effective and is positively influencing the development of ACP programmes internationally.

Compilation of data on issues identified as ‘most important’ at the end-of-life, examination of an ACP resource that responds to these issues, review of data from recent NIH study of perceptions of ACP by adolescents and young adults, and an overview of the influence on international ACP efforts.

More than 19 million Five Wishes documents, available in 27 languages, are in circulation. More than 35 000 partner organisations include hospitals, health systems, and places of worship. Known sites of replication efforts include Australia, China, Taiwan, Norway, and Italy.

Having a user-friendly and easy-to-understand tool that encourages people to discuss their personal, emotional, and spiritual needs along with their medical wishes results in increased completion of usable and meaningful advance care plans.

People respond well to ACP when matters of the heart and soul are included in the process, as well as when patients and families are empowered to make their own decisions. Lessons learned in this initiative provide helpful guidance for international efforts to encourage ACP.

The 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).

The 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.

This 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.

The paper argues that ACP practice in mental health will be facilitated by practical research into the law and its effects.

To establish Australian psychiatrists' knowledge, attitudes and practice regarding PADs.

A national online survey of Australian psychiatrists.

Of 165 respondents, 56% reported low to very low knowledge of PADs and only 27% reported experience with PADs or a similar instrument. 76% of psychiatrists expressed support for the introduction of PAD legislation and 83% would be more inclined to use PADs if the law acknowledged their role as important. 79% expected that PADs will have a positive impact on mental health care, with the benefits considered to outweigh specific clinical issues such as medication refusal (54%) and limitations on patient care (64%).

Australian psychiatrists have low levels of knowledge and experience regarding PADs. A high level of general support for PAD use and legislation was expressed.

Australian psychiatrist expressed encouraging attitudes towards the implementation and use of PADs, and further research is required to develop an effective and sustainable model of ACP for mental health care in Australia.

To establish Australian mental health clinicians' knowledge and attitudes regarding PADs.

A national online survey of Australian psychologists and case managers.

Of 260 respondents, 67% reported low to very low knowledge of PADs and only 20% reported any experience with PADs. 73% of clinicians welcomed service change that would give consumers more control over their management and 63% would be more inclined to use PADs if the law acknowledged their role as important. PADs were expected to have a positive impact on mental health care (80%) and not pose major limitations to consumer care (65%), however 45% expressed concern that the benefit of PADs may be outweighed by the refusal of indicated treatments such as counselling.

Australian mental health clinicians have limited exposure to PADs, but display encouraging attitudes towards their potential benefits and related systems changes.

Australian mental health clinicians were supportive of the use of PADs and further research will help to develop a sustainable model of ACP for mental health care in Australia.

The punishment of the physician who practices euthanasia in Italy.

In Italy, where there no law about euthanasia, judges interpret the Criminal Code through the Constitutional right to health and the ‘European Convention on Human Rights and Biomedicine’ (‘Oviedo Convention’) of 7 April 1940.

Passive euthanasia to an unconscious patient and active euthanasia to a conscious patient are considered as homicides. Moreover, active euthanasia to a non-consensual patient is considered as intentional homicide. But, passive euthanasia to a consensual patient is treated as assisted suicide. However, it should be emphasised that, except in cases of active euthanasia to non-consensual patient, judges enhance the internal legislation by interpreting it through the constitutional right to health and the ‘Oviedo Convention’ of April 4, 1997. Article 32 of the Italian Constitution recognises the ‘Right to health’ which grants patients the right to consent to or even withhold from medical treatment. Furthermore, article 9 of the ‘Oviedo Convention’ gives full legitimacy to the ‘Advance Directives’ by considering them as ‘statements of intent’ and not as ‘declaration of intent’.

Interpreting the Italian Criminal Code with fundamental rights recognised in the Italian Constitution and in the ‘European Convention on Human Rights and Biomedicine’ is an effective way to fill the gap in the Italian legal framework.

This study supports the introduction of a clear law that disciplines End-of-life Decision Making in Italy.

This paper will review the relevant laws of England and Singapore, and compare their frameworks for end of life decision-making.

The 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.

There 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.

Given 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?

The 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.

The purpose of these classroom discussions was to ensure future Registered Nurses had a clear understanding of the limits of the WA ACP legislation in relation to their legal obligations as a registered health professional.

Qualitative methods were used including observation of class presentations, student interviews and opinions, written essays. Thematic analysis was applied to these data.

Themes included: the conflict between personal versus professional ethics; clear understand that WA ACP legislation covers what a person may refuse, but does not include mode of death; individual conflict about what the words ‘beneficence’ and ‘non-maleficence’ really mean; the legal fact no-one has the right to self-determination about their death.

The Ethics and Law unit successfully challenges students' notions about patients' autonomous rights versus clinician obligation for non-maleficence and beneficence.

Students demonstrate a depth of comprehension and compassion about WA ACP legislation, and significantly, how this may impact on their role as Registered Nurses in the future.

We reviewed the current literature and surveyed staff of residential care and inpatient facilities within the Northern Sydney Local Health District regarding pain assessment and management, and end of life care in people with cognitive impairment.

We describe some of the barriers to the assessment of pain and end of life symptoms in people with cognitive impairment and identified practical solutions for facilitating assessment and management of these symptoms. We recommend a range of education strategies for addressing this issue.

There is a discordance between theoretical knowledge in the area of pain assessment and management and end of life care, and actual practice, which needs addressing.

More extensive education and training about pain, end of life care and dementia is needed.

Eating difficulties among patients with dementia have been identified in Western countries and they progress when dementia advances. Previous studies have indicated that low food intake and weight loss is not a result of people with dementia not willing to eat independently.

The study consisted of nurses observing meal time observations. Observation was done for 3 days during lunch and dinner time.

17 participants were selected from patients with dementia from 2 geriatric units in an acute care hospital. Data was collected using the Barthel index, Mini Mental State Examination (MMSE) and Edinburgh Feeding Evaluation in Dementia (EdFED)

The prevalence of low food intake at meals in patients with dementia in the acute care unit was about 10%. Eating difficulty, no feeding assistance, moderate dependence, few family visits, being female and older were six independent factors associated with low food intake.

Nurses needed to assess the patients feeding ability to continue to self feed. To supervise the feeding of the patients with moderate dependency and appropriate verbal or physical assistance at meal times is recommended.

Relevance to clinical practice: Strategies to encourage families to visit their older relatives in acute care units is encouraged and recommended.

Report ACP uptake and impact on end-of-life care in a rural hospital setting.

This retrospective case notes-based audit of 90 admissions resulting in death was conducted in five rural hospitals in the Great Southern region of WA in 2012: the 100-bed regional centre (N=50) and four more remote ~10-bed facilities (N=10). A palliative care nurse used an in-house designed audit tool to collect data on demographics, process and outcomes measures. A palliative physician double coded five randomly selected sets of notes.

Most patients elderly (M=79.6 years), admitted via ED (58%), on average 13 days before death. Malignancy accounted for 40% of deaths. Some form of ACP was documented in 34%, with 9% having an AHD and 1% having an EPG. 50% died on the Liverpool end-of-life care pathway, those on the pathway scored higher on a composite measure of care quality (² (2,90)=31.6, p<0.001). ACP documentation did not predict likelihood of being commenced on the pathway (p>0.05) or scores on the composite measure (p>0.05).

As ACP is promoted in our community, our rural hospital network must develop system-wide responses to guarantee ACP influences care.

This audit reports baseline data, which can be repeated following ACP-based interventions.

To define epidemiology of patients admitted to ICU for consideration of organ donation or palliative care and identify factors associated with outcome.

Retrospective analysis of data from the Australian and New Zealand Intensive Care Society Adult Patient Database between 2007 and 2011.

Between 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.

Admission to ICU for palliative care or consideration of organ donation is uncommon and most patients die. Functional status of survivors remains unknown.

More work is required to better identify patients who might survive, and assess needs and functional outcomes.

To explore the ethically challenging features of these conversations, in the context of talking with families about organ donation after circulatory death, or DCD.

Review of the literature and of training videos that explore these ethical features.

Four ethical tensions are identified:

After exploring these four ethical features, we will view segments from a video training tape that illustrate different approaches for resolving these tensions.

The important goal of promoting organ donation needs to be pursued with awareness and sensitivity for the ethical tensions inherent in this process.

An analysis of whether Australian law should allow a minor to refuse medical treatment.

The analysis of case law, legislation and academic opinion expressed in both legal and ethical journals.

As this is not an empirical study but a study of legal and ethical argument, the results are canvassed in the Discussion.

This 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.

This study concludes that Australian law should not recognise a right of the mature minor to refuse medical treatment.

To 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.

A 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.

Adolescents' 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.

The 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.

To overcome practical barriers to completion of advance care plans.

From April 2011 our Care Coordination Service established a fortnightly home- based Advance Care Planning Clinic, in which two staff visit patients at their home. In August 2012 this was supplemented by a fortnightly hospital-based clinic. Patients can be booked into either clinic. In the clinic, an Advance Care Plan is prepared comprising of a Statement of Choices and may include Enduring Power of Attorney, witnessed by an authorised clinic staff member. Partners are also offered the opportunity to complete their advance care plan at this time.

In January–March 2011, prior to the commencement of the clinic, there were 54 patients receiving care coordination of whom 19 (35%) had a completed advance care plan, including a Statement of Choices. In October–December 2012 there were 89 patients who had received care coordination of whom 35 (39%) had a completed advance care plan.

The establishment of Advance Care Planning Clinics has been a practical way to help overcome multifactorial barriers to preparing a Statement of Choices, providing increased access opportunities and support for timely completion. This approach enabled staff to improve completion rates whilst managing a 65% caseload increase.

To improve communication between clinical staff and between clinical staff and families about end of life care choices.

We developed and implemented a novel approach: the Allow a Natural Death Policy and form. We collaborated with the NSW Ambulance Service to develop a system to communicate care choices to paramedics.

We audited the medical records of 43 children who died at CHW January–September, 2011. The results were:

Where no End of Life Care choices were documented:

Compliance with completing the AND was high, with the following sections completed 100%:

Paramedic data is yet to be audited.

This project was well received by clinicians, paramedics and families. The audit demonstrated successful implementation.

Focussing on the positive choices for care, rather than the withdrawal of care, has made difficult discussions easier and junior staff clear guidelines.

The 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.

Data 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.

Four 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.

The 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.

The study will help health professionals to perceive psychosocial and spiritual needs and properly provide support for terminal cancer patients.

To examine rate of change in ACP plans and factors that may have contributed to changes in ACP plans.

ACP outcomes for readmissions and death were analysed from retrospective audit of paper and electronic medical records.

Between October 2011 to December 2012, a total of 154 Preferred Plan of Care (PPC), a POLST-type ACP were completed with patients and/or their next-of-kin (NOK). Out of these 154 PPCs, 5 ACP plans were revised. Time lapse between creation of first and second ACP plan ranged from 3 to 91 days. One patient had decision making capacity at first and second ACP documentation, while 4 other patients had no decision making capacity at both ACP documentation. four revisions were initiated by doctors whilst one was initiated by the substitute decision maker. Two ACP plans were changed after further clarifications with NOK whilst three revisions took place when there were changes in the patients' medical condition or after trial of medical intervention. Three of the patients have since passed away.

The number of changed ACP plans is a small fraction of the total completed. Doctors were active in continual exploration of ACP plans.

In our cohort, ACP plans remain relatively stable. ACP is a dynamic process that need a culture of review and re-exploration of care preferences in order to be responsive to changes in medical condition and care preferences.

To evaluate the attitudes and perceptions of trained ACP facilitators in TTSH.

An anonymous cross-sectional survey in the form of a questionnaire was administered to all certified ACP facilitators in the hospital.

A total of 59 trained facilitators, comprising nurses (36%), doctors (29%), medical social workers (25%) and case managers (8%) responded to the survey. Majority (95%) of respondents favour ACP and 86% consider ACP as one of their roles. More than 90% respondents felt that ACP promotes patient-centred care, improves communication, and reduces burden of decision making on families. Most of the time (53%), initiation of ACP was by doctors.

90% respondents felt that ACP is challenging to conduct. Major barriers to conducting ACP are lack of time (66%), perception of low receptivity to ACP in patients' families (53%), patients' lack of understanding of ACP (50%) as well as language barriers (48%).

While the attitudes of trained facilitators towards ACP are largely positive, there are significant barriers to ACP facilitation, namely a lack of time.

Whilst it helps to spread advocacy for and practice of ACP in training facilitators from multiple healthcare disciplines, there is also a need for careful consideration of resource allocation such as dedicated ACP facilitators, for successful implementation of ACP.

To audit awareness of ACP plans and congruence of patients' ACP plans with care delivery during readmission episodes and upon death.

ACP outcomes for readmissions and death were analysed from retrospective audit of paper and electronic medical records.

From October 2011 to December 2012, a total of 154 preferred plans of care were completed with patients and/or next-of-kin. Five ACP plans were revised. Medical team was aware of patients' ACP plans in 75% of 67 readmissions. Medical interventions and initial place of care in event of deterioration were congruent with patients' stated preferences in 98% and 94% of readmissions respectively. Preferred place of death was honoured 74% upon death of patients.

There was high awareness of advance care plan during readmission, and high congruence between patients' preferences and care delivery.

Advance care planning is an effective process in honouring patients' care preferences. More can be done to examine resource allocation, sustainability and reach of the programme and to address barriers to ACP.

Although this is a small rural service, the CPCS should provide support to primary care services during an episode of a person's care. This includes promotion of a palliative approach across all care settings and to the community in general.

Data for the previous 2 years was reviewed to identify episodes of shared care or consultation to primary care providers; Key stakeholders interviewed and responses grouped into themes of need/support; Education provided and evaluated; Stakeholder review to determine perceived benefit.

The number of shared care or ‘consultation’ episodes was not reflected in the data due to limited reporting fields and inconsistency of data entry. Stakeholders agreed that palliative care occurs across all settings but recognition by primary care staff continues to be low. There was a perceived need to increase staff confidence in abilities, recognising transition of care (phases) and reviewing Advance Care Plans. Two education programmes were provided with 47 staff attending. On 10 point scale there was a shift of +2/+2.2 respectively in knowledge of after education.

Access to Palliative Care Staff on a regular basis increases staff confidence within Primary Care Services.

Increased support and direct promotion of the Palliative Care Service is beneficial for assessment and care planning across Primary Care Services.

To 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.

Part A: Prospective audit of documentation of ACP for 100 patients referred to MATS

Part B: De-identified, paper-based surveys of the managers of the RACFs where the patients from part A of the study were residing.

Part 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’.

This 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.

There is a need for structured policy coupled with appropriate funding as well as further education of both public and health professionals.

To investigate registered hospital and nursing home nurses' experiences of coordination and communication within and between care settings when older persons are transferred from nursing homes to hospital and vice versa.

In 2008, three focus group discussions were conducted with registered nurses from hospitals and nursing homes (n=20). Data were analysed using content analysis.

Nursing home registered nurses found it difficult to decide whether or not the older person should be referred to hospital from the nursing home. Hospital registered nurses reported often trying to stop premature discharges or having to carry out the discharge although it had not been fully prepared. Both hospital and nursing home registered nurses suggested increased collaboration to understand each others work situation better.

Communication and coordination among hospital and nursing home registered nurses need to be furthered improved. Registered nurses' coordination and planning in the nursing home are extremely important to future elder care. We recommend that the medical care plan be regularly updated and meticulously followed, the aim being to reduce the risk of inappropriate medical treatment and nursing care as well as unnecessary transfer and admission to hospital.

To consider ethical issues for clinical nurses in end-of-life care.

We surveyed seven nurses on the nursing team involved in this case, through group interviews. The interviews concerned topics including nursing policies and plans, the content of conferences, and the dilemmas nurses experienced.

Through data analysis, we identified 63 codes, 25 subcategories, and six core categories. While admitted, the patient constantly used the nurse-call for various reasons. She made particularly many calls during the postoperative acute stage and the postoperative recovery stage. In the postoperative acute stage, the nurses anticipated a danger when hearing the nurse-call, immediately answered the call, and went to her room to take appropriate action. However, during the postoperative recovery stage, the nurses were not aware of her sense of anxiety and were confused by the patient's frequent nurse-calls, even during recovery.

Gaps developed between the patient's thoughts and the ethical assumptions of nurses in end-of-life care. This gap was due to differences in each other's goals.

This study will support promotion, from the nurse's point of view, of the provision of medical care that satisfies patients, which has not advanced smoothly in Japan.

A 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.

For this review CINAHL, Pubmed and Medline were searched under the keywords ‘patient rights’, ‘critically ill’ and ‘autonomy’, ‘decision-making’.

Patient 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.

It 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.

Further 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

To study the reasons for patients who were not able to fulfil their wish to die at home.

A 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.

A 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.

Figure 1

Cause and Effect Diagram

Singapore 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.

To construct an evidence based paper and video-based Decision Aid Library for End of Life Care for best patient information supporting the ACP facilitation process

We screened the literature for evidence-based information and evidence-based decision aids regarding (1) general Goals of Care, (2) Resuscitation (3) Tube Feeding (4) Antibiotics, (5) Ventilation (6) Dialysis Withdrawal and (7) last place of Care and constructed a library of evidence-based decision aids, qualitatively pretested by staff and patients.

Following a methodical screening process, a library of evidence-based papers and videos was constructed, which is currently being qualitatively evaluated by staff and patients as the first step in a grant-funded randomised controlled trial on the effect on ACP for palliative care patients in Switzerland.

We will discuss the content and qualitative results of the Decision Aid Library at the Melbourne Conference

From an ethical point of view, best information is crucial for making informed choices. If the decision aid library proves to be useful, evidence-based information and decisions aids should become part of ACP programmes.

The primary aim was to clarify whether ACP should be performed by the palliative care (PC) team concomitantly with morphine administration. The secondary aim was to clarify the opinion of home care support physicians on concomitant use of opioids and ACP.

We investigated the level of ACP conducted by PC teams among patients who were using opioids. We conducted an inventory survey on the concomitant use of morphine and ACP among 220 doctors, including 147 home care support physicians.

ACP was conducted by PC teams for all patients who were using opioids. PC team members agreed to concomitantly perform ACP and opioid administration for dyspnoea in diseases such as COPD, 137 (62.3%) among 220 doctors, including 147 home care support physicians were agreed to.

In comparison with PC team members, the ratio of home care support physicians who advocated ACP concomitantly with morphine for dyspnoea was low.

This study clarified the opinions of home care support physicians and PC team members on the concomitant use of opioids and ACP.

To survey the practice and attitudes of GPs and patients to discussing resuscitation and identify strategies to encourage such discussion.

From 18 April 2011 to 26 June 2011 Victorian GPs were surveyed anonymously through GP Divisions of Victoria and patients attending Ararat Medical Clinic aged over 65 were surveyed anonymously.

90 GPs responded.

Identified incentives to discuss resuscitation included: ‘knowledge that my patient wanted discussion’ 79%, ‘incorporation into management plan’ 71%, ‘discussion guidelines available’ 42%, ‘medicare item number’ 34%. Very few felt uncomfortable about the discussion or ‘not my duty’.

Of 97 patients, 63% did not know what a resuscitation order was but 70% would like their GP to discuss it with them and 84% would be comfortable talking about it with family.

Although the majority of GPs do not discuss resuscitation frequently with their patients, for various reasons, there are opportunities, through perceived ‘incentives’, to improve the discussion rate. The majority of their patients are keen and comfortable to have this discussion.

The majority of GPs believe that it is their responsibility, and the majority of patients that it is their wish, to discuss resuscitation. There are realistic opportunities to increase the discussion rate.

To determine whether adding code status to a living will improves understanding and treatment decisions.

An Internet survey was conducted of General Surgery and Family, Internal and Emergency Medicine residencies between May and December 2009. The survey posed a fictitious living will with and without additional clarification in the form of code status. An emergent patient care scenario was then presented that included medical history and signs/symptoms. Respondents were asked to assign a code status and choose appropriate intervention. Questions were formatted as dichotomous responses. Correct response rate was based on legal statute. Significance of changes in response due to the addition of either clinical context or code status was assessed by contingency table analysis.

768 faculty and residents at accredited training centres in 34 states responded. At baseline, 22% denoted ‘full code’ as the code status for a typical living will and 36% equated "full care" with a code status DNR. Adding clinical context improved correct responses by 21%. Specifying code status further improved correct interpretation from 28% to 34%. Treatment decisions were either improved 12–17% by adding code status (‘Full Code,’ ‘Hospice Care’) or worsened 22% (‘DNR’).

Further research is required to ensure safety, understanding, and appropriate care to patients.

Misunderstanding of advance directives is a nationwide problem. Addition of code status may help to resolve the problem.

Alfred 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.

Prior 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.

Our experience provides a successful example of how to implement quality improvement in ACP in RCFs over a realistic time frame with limited resources.

To develop a multifaceted programme of service development, education, and research to meet specific organisational needs as well as national and accreditation requirements on ACP in Australia.

We will present the successes and challenges of various interventions undertaken including:

The implementation of a cancer specific model of ACP is a complex intervention requiring the development of an organised clinical microsystem. Challenges which emerge throughout the implementation process will be delineated. Lessons learned will guide ongoing development of the disease specific ACP model in the cancer centre and its feasibility will be examined in a Phase II study of patients with advanced cancer.

In 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 Africa

Group 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.

Support 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.

People 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.

The 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.

Out 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.

Out 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.

The most important finding was that the residents' wishes were respected.

Clinical strategies are more useful in promoting nursing home ACP.

To assess the current status of organisation, actual practice and possible improvement of AD-consultation in Germany and thereby the need for structured ACP-programmes.

A pilot study using a written questionnaire (Likert-Scale) completed by 33 consultants participating in a follow up meeting of a Bavarian Hospice Academy.

A typical consultation is initiated by the consulted individual himself, takes between 60–90 min and includes one meeting. The age of the consults is predominately between 61–80 years, they seem to be healthy. 27% of the participants has no or rarely knowledge about the health status of the consults. 97% use the same form for AD (Bayerisches Staatsministerium der Justiz), 100% inform about a proper custody. 91% suggest to invite a person of trust and report a positive experience of such an integration. They never or rarely exchange with other care providers.

The 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, initiatiate conversations, ACP process with several meetings, planning with health care provider, update of plans).

It underlines the need for more comprehensive ACP-programmes.

This is a descriptive study of older patients newly to admitted two geriatric units of Khoo Teck Puat hospital in Singapore (n=21). Upon admission, patients were screened for delirium with the Confusion Assessment Method and severity of delirium symptoms were determined by using the Delirium Index.

Of the 21 delirious older patients, 14 had moderate-severe delirium while seven presented mild delirium. In the analyses, a significant positive relationship was observed between the level of prior cognitive impairment and the severity of delirium. Low mini-mental state examination (MMSE) scores the presence of severe illness at the time of hospitalisation and low functional autonomy in instrumental activities of daily living: were significantly associated with moderate-severe delirium. Older patients suffering from mild delirium used significantly more drugs than those with moderate-severe delirium. Results indicated that MMSE score at admission and medication use were the factors most strongly associated with the severity of delirium symptoms.

This present study indicates that issues associated with moderate-severe delirium are different from those associated with mild delirium. Given the result concerning the role of medication, future studies should evaluate the role of pain management in the context of delirium severity. As moderate-severe delirium is associated with poorer outcomes than is mild delirium, early risk factor identification for moderate-severe delirium by nurses may prove to be of value in preventing further deterioration of those older patients afflicted with delirium

Dysphagia is a common problem notably among the elderly and it affects the digestion of food, fluids and medication. With the number of older people increasing and at present dysphagia has become a major problem in terms of medication administration and therapy.

In 2011, we carried out interviews with 11 patients in a restructured hospital in Singapore. These patients had different grades of dysphagia. The interview records were analysed using the Colaizzi technique.

Six inter-related themes were distinguished from the data. They are (1) the wide variety and spectrum of dysphagia, (2) Medication formulation, (3) information discussion between patients and health care professionals, (4) circumstances affecting medication observance, (5) approaches used to enhance swallowing and (6) the fundamental purpose of swallowing as eating and drinking.

It is essential to ensure that each patient has an individualised medication programme and for patients with dysphagia the formulation of the medicine is as significant as the active ingredients.

Purpose 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.

One-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.

Overall 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.

Palliative 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.

The purpose of this research will be to describe the role and function of the MNDA (WA) Care Advisors, find if there are supports for these clinicians which are currently not being met, with the intention of increasing retention of staff.

Qualitative methods will be used including: a literature review of current best practice; observation of interactions with clients; Care Advisor interviews; MND patient interviews about what they see as the role and function of Care Advisors; and review of any workplace guidelines, policies and procedures relating to supportive measures available to the Care Advisors. Thematic analysis will be applied to these data.

Results will be presented to the key organisations to underpin development of a supportive framework for Care Advisors. This information will also be submitted to various journals to advance the general world knowledge about MND carers.

The discussion at this point relates to the anticipated findings and potential benefits of the research. It is anticipated this research may be generalisable to carers for other disease conditions.

The research will generate increased knowledge and understanding about the role and function of Care Advisors working with people living with MND.

To determine the effectiveness of a Buddhist temple-based education programme on blood pressure reduction and improving the behavioural changes of exercise, salt intake, intention to visit the physician as well as antihypertensive medications.

A quasi-experimental design was adopted. The study comprised of; (1) the intervention group and (2) the control group. Both groups consisted of 73 persons aged 60 years and above. Data was obtained at baseline and 6 months after the intervention. Temple committee members were trained to be as programme educators. Posters of knowledge about high blood pressure or modifying behaviours on exercise, salt intake and visiting the physician/on antihypertensive medications were placed in strategic locations within the temple environment.

Significant reduction in systolic blood pressure was found among participants of the intervention group (p<0.001). Moreover, systolic blood pressure in the intervention group was found to be significantly lower than that of the control group (p<0.05). In addition, significant behavioural improvement in regards to exercise and salt intake were found among participants of the intervention group compared to the control group (exercise = p<0.001; salt intake=p<0.001). However, no significant difference between the intervention and control groups was detected on diastolic blood pressure (p=0.746) and behaviour on visiting the physician/on antihypertensive medications (p=0.340).

Specific aspect of temple-based education programme can be advocated to an effective way to reduce blood pressure and improve behavioural changes on exercise and salt intake.

Nurses should consider including an advocacy for adapting regular Buddhist temple practice in the protocols for hypertensive Buddhist elderly.

This study aims to investigate palliative nurses' knowledge and perception on end-of-life-care, death and dying.

A survey was conducted using questionnaire among 177 palliative nurses working in a urban hospital,

Majority of the respondents (75%) had good knowledge on end of life care but have poor perception on end-of-life- care (57%), experiences towards moment of death (56%) and experience at the end-of-life (86%). Only 31 (15.5%) scored good perception on the overall care. The ² statistic showed a significant relationship between age and work experience with nurses and perception on end-of-life- care at p value of <0.05.

Although efforts are being made to improve nurses knowledge on end of life care, practicing nurses still lack of knowledge in providing end-of-life -care and the study findings shows poor perception on end of life care, death and dying. One of the reasons could be due to lack of experience with majority of nurses have less than 1 year experience and below 30 years old.

Continued practice development is needed in improving end- of- life- care.

To 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:-

To describe increase ACP in GSF care homes.

Evaluation findings following GSF training in End of life care and Accreditation in five settings are described, with illustrations and quantitative and qualitative examples.

Increased 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."

Use 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 care

Routine staff training in EOLC and assessment/accreditation of organisations leads to widespread improvements in care.

To 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:

The 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 2013

It 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.

These findings are in line with the UK's PM Challenge in dementia.

We hope to demonstrate the quantitative and qualitative improvements in care in increased uptake and implementation of ACP discussions in people with dementia.

To determine the extent of correct identification and documentation of SDMs or PRs as per GAA in two RACFs in Victoria, Australia.

Retrospective audit of paper and scanned electronic medical records (n=88).

Admission forms, which include the resident personal details form and the medical admission were examined for identification of next-of-kin (NOK), Power of Attorney-Medical Treatment (POA-MT) or guardian. The complete medical file was then examined to confirm correct identification on the admission forms. VCAT was also contacted where confirmatory documents were not found in medical records.

First NOK was more consistently documented than second NOK (75% vs 33%).

POA-MT or guardianship with healthcare powers (GHCP) was noted in ~15% of admission forms with only 15.4% having valid documents available.

In 26.1%, admission forms were unclear; of these, 34.8% were confirmed to have a POA-MT or GHCP. In 59.1%, no POA-MT or GHCP was noted; of these, 1.9% were found to have a POA-MT.

For residents with no confirmed POA-MT or GHCP, the first NOK was a potential PR (as per GAA) in 71.8%. Of these, 49% were confirmed as the PR.

Documentation of POA-MT or GHCP is often incomplete or incorrect. A listed NOK is not necessarily the PR. Procedures and forms that use clear, unambiguous terminology must be developed to aid correct identification and documentation of SDMs.

1. To audit the documentation rates of EOLC wishes in two low-level RACF in Victoria, Australia.

2. To assess whether documented EOLC wishes are likely to affect medical care in an emergency department (ED) presentation.

Retrospective audit of medical records (n=88). Assessment of documented EOLC wishes by a consultant physician with expertise in advance care planning.

This audit demonstrates poor documentation of End of Life care wishes in a RACF setting. Healthcare services should prioritise staff and consumer education in this area and improve procedures and forms that provide clear guidelines for the useful documentation of EOL care wishes.

The primary aim of this study was to evaluate the usefulness of end-of-life care teams (EOLCTs) for both cancer and non-cancer patients. The secondary aim was to evaluate the usefulness of narrative life reviews and ACP conducted by full-time EOLCT nurses using qualitative analysis.

We conducted the ‘three-pillar strategy for decision making’ for the families of 209 patients. There are three large pillars, (1) patient's wishes; (2) family's wishes; and (3) medical judgment. There are also three key pillars in regard to patients' wishes: (1) ‘Present’: Regardless of the patient's competence/incompetence, any subtle signs shown by the patient must be noted; (2) ‘Past’: ACP and narrative life reviews must be checked; and (3) ‘Future’: The best future interests must be considered. The patient's wish is the most important pillar.

Intervention by the three-pillar strategy in EOLCT decision making tended to increase the number of home deaths in accordance with patients' wishes in collaboration with the home care support ward. Narrative life reviews by nurses led to enhancement of ACP.

The most important finding was that patients' and their families' wishes were respected.

The three-pillar strategy used by EOLCT in decision making was useful in enhancing hospitals' ACP.

To produce a culturally appropriate resource for the Aboriginal Community around advance care planning.

Shane met with Aboriginal Health Workers and made `well received' progress with the vision for an ‘Advance care yarning’ booklet.

Consultation with Aboriginal Health Care Workers about the booklet was favourable. The regional media team assisted with the booklet formatting, using a beautiful painting by Aboriginal artist Marlene from Alice Springs. Permission has been obtained for longevity of images used.

A Booklet was published with the approval of Aboriginal people and senior Aboriginal Management in Health. Language, artwork and photographs were changed to appeal specifically to the Aboriginal Community

The RPC Advance Care Planning booklet (Austin Health) was modified to relate to both remote and metropolitan Aboriginal communities. Over 2000 copies have been requested from Aboriginal services and other health services across Australia. The booklet is utilised in current training and development programmes

A tool is now provided where there was a gap for engaging and informing Aboriginal people about advanced care planning for Advanced Care Directives.

The booklet has been well received and has been republished.