bluuebunny/crossref_metadata_2025 huggingface dataset:
Transferability of an ACP model across Australian community palliative care
Authors: Blackford J , Street A
Published: May 2011

A study was undertaken to determine whether the Respecting Patient Choices Community Specialist Palliative Care Model developed for community palliative care services in Victoria, Australia was transferable to other Australian states and territories. For ease of reporting it will simply be referred to as the Model. The Model consisted of five domains: governance, advance care planning (ACP) education, ACP documentation processes, community engagement and quality processes. A sequential process for implementation was recommended to embed ACP into organisational practices. A variety of resources were designed to support the services in the process of organisational change. Four community palliative care services participated in the study. The sites differed in geographic location, staff profile, client and family demographics, services offered and different state-based legal and health care structures. Two services were located in Northern Australia and two in Southern Australia. The achievements of the project were in identifying factors in the successful transferability of the Model across different health care contexts. The identified domains of the Model were relevant to all services but what differed was the sequence in which they were implemented. The services worked through the components of the Model in their own ways and to their own timetables. It was clear that implementation resources designed as part of the Model were extremely useful to assist services in the implementation process. This flexibility in the Model design made it transferable to different local contexts. The findings also suggest the Model has potential relevance to an international audience.
A psychological profile of middle-age cancer patients' terminal experience in hospice home care
Authors: Lee H T , Wu W Y , Hu S C
Published: May 2011

Cancer patients facing terminal illness have the most complex psychological and reluctant feeling, especially for middle age adults. This paper aims at exploring the middle-age cancer patients' terminal experience from the psychological profile in hospice home care. The research adopted the purposive sampling method and collected data though participatory observation and in-depth interviews. The data were analyzed by the phenomenology qualitative method, and the research field was located in the hospice home care in north Taiwan. In overview, there were four psychological categories from interviewing middle age cancer patients about their terminal experiences in hospice home care, namely: fear, restlessness, depression, as well as ambivalence. Regarding fear, there were three issues that emerged form this theme, which are: (1) fear of inexplicability; (2) fear of no treatment (3) fear of unknown world. Regarding to restlessness, there were three issues under this theme, as namely: (1) irritable mood (2) dysphoria (3) unpeaceful mind. Regarding to depression, there were three issues under this theme: (1) emotional emptiness (2) low mood (3) feeling depression. Regarding to ambivalence, there were three issues under this theme, which are: (1) rising and falling emotionally (2) capricious thoughts (3) uncertainty. Thus, the phenomenon of middle-age cancer patients facing terminal stage presented by the results form this study shown as a phenomenon of resistance.
Self-perceived burden to family in terminally ill cancer patients at palliative care unit in Japan: perspectives of patients
Authors: Kishino M , Miyashita M
Published: May 2011

Self-perceived burden (SPB) is a common problem in terminally ill cancer patients. SPB affects decision making such as life-sustaining treatments, choosing care facilities and communication between patients and the family at the end of life. However there are few studies clarifying SPB. The purpose of this study were to describe the experience of SPB in terminally ill cancer patients at palliative care unit in Japan, and to obtain what patients need medical staff to do to relieve SPB. Semi-structured interviews were conducted in five patients.

Two investigators were involved in answer interpretations to fully understand the meaning of participants' insight and reduce bias. Participants are all male in the age range of 63–73 and retired. The primary caregiver of them was their wife. SPB consists of six following categories ‘physically burdening’ ‘making the family worry’ ‘making the family feel impotent’ ‘venting on family’ ‘affecting family roles’ and ‘causing problems financially and in the human relations related with admission and death’. Participants hoped that the medical staff cared them and their family, for instance managing symptoms, listening to the patients and their families, making the patients feel comfortable and being faithful to tasks of palliative care. As SPB is constructed from multi-dimensional aspects, it is crucial to assess the patients holistically including the relationship with their families, the patients' role in their families and the families themselves.

This study suggested that nurses should approach not only the patients but also their families, and evaluate the care and attitude continuously.
Introducing advance care planning in community palliative care
Authors: Sives D , Cornbleet M A , Murray S
Published: May 2011

Aim

To design and introduce for all patients referred to a hospice community team an intervention that facilitates advance care planning (ACP), and to evaluate the feasibility and utility of this innovation.

Design

Piloting of the implementation of structured ACP, followed by a longitudinal mixed-methods evaluation. We introduced into routine practice a structured aide memoire (to facilitate ACP) and recording sheet.

We evaluated this intervention prospectively collecting detailed process and outcomes data and conducted serial interviews with patients, their case linked carers and CNS. Interviews were digitally recorded, transcribed and analysed.

Findings

We routinely attempted ACP from initial contact. In only 18% of patients could this be initiated at 1st visit due to various barriers The documentation of PPC increased compared with before (58% vs 30%) but the ACP prompt was only used in 8%.

The serial interviews identified barriers to ACP for patients, carers and the CNS. A fear of dying and the patient perception of who should undertake ACP emerged as important patient barriers while there are specific challenges to care planning in patients with organ failure and the frail elderly with cancer.

Conclusions

Facilitated ACP with prompts proved less useful for initiating conversation for CNS in palliative care. However the introduction of structured documentation improved the recording and communication of care preferences. Significant barriers to ACP exist which may persist despite skilled facilitation. More research and education is necessary before ACP can become routine for all who desire it.
ACP for dementia: a delphi study
Authors: Sinclair J , Oyebode J
Published: May 2011

The aim of this study is to gain a consensus among policy makers, healthcare professionals, people with dementia and family members about how best to discuss advance care planning (ACP) with people with dementia. This is being done through the use of the ‘Delphi method’. This involves rounds of questionnaires aiming to reach a consensus among participants. This is done by feeding back responses from the previous round and giving participants the opportunity to change their responses in light of group views and opinions. This is being done in order to create guidelines which have been produced with equal input from all parties who they will affect. This of particular importance as people with dementia often become marginalised in discussions of their future care. The ‘Delphi method’ has been extensively used within education and nursing to shape policy but has not as yet been used to investigate or help form policy in the area of ACP.

We are presenting the results from the first round of this study which will demonstrate (1) current agreement/disagreement surrounding dementia and ACP, (2) current opinions about the relationship between disclosure of a dementia diagnosis and ACP, and (3) How the ‘Delphi method’ can be used in the construction of policy which takes equal account of the opinions of all groups involved.
The efficacy of a teaching video program on postmortem care
Authors: Kao P Y , Hu W Y , Lo H M
Published: May 2011

Postmortem care is basic nursing skill, includes physical care of the body, patient's cultural background, family support, issuing death certificates based on government regulations, and communicating with funeral directors. However, the hospice team has been the only treatment group that takes postmortem care seriously. The goal of this research is to develop a guideline and a teaching video of postmortem care for nursing staff. The subjects are nurses after probation. First, we interviewed them about their perception of postmortem care. Second, we set up a guideline and a video on the topic of postmortem care. The participants took pre-test and post test for evaluation. The data were analyzed with SPSS 12.0. We included 69 nurses whose average work experience was 6.1 years. 73% of them hadn't taken courses about postmortem care at school. 25% believed that knowledge learning at school was unpractical. There are significant differences before and after the class in the intention of doing postmortem care (p=0.015), the importance of postmortem care (p=0.001), and the perception of postmortem care (p=0.001). The predictors that influence perception of postmortem care are: number of experiences in practicing postmortem care, work unit, and importance of postmortem care. Terminally ill patients usually end lives in the hospital. Postmortem care is basic nursing skill. We suggest that postmortem care should include in the training program for new staff in order to improve the quality of terminal care. The results also provide information to improve terminal care for administrator of nurse.
What do professionals experienced in delivering end-of-life care want to know about advance care planning (ACP)?
Authors: Poultney J , Munday D , Maclaran S , Martin S
Published: May 2011

West Midlands South HIEC ACP project aims to encourage the use of advance care planning (ACP) more widely by training and supporting a multidisciplinary group of health care professionals from local acute trusts, community services and hospices who provide care for patients at the end of life.

The project includes a study day focusing on definitions of ACP, ethical and legal implications, use of local documentation and communication skills training – exploring approaches to initiating ACP conversations with patients using role play with actors.

To date 40 professionals have received training with a further 40 scheduled for March and April 2011. Those attended included: palliative care and long term condition clinical nurse specialists, district nurses, care home staff, occupational therapists, physiotherapists and an elderly care physician.

At the start of the day all of the group are asked to write down three questions that they want to have answered. Questions have fallen into five main categories: ethical and legal aspects (34%), use of documentation (30%), when to do ACP (19%), how to have the conversation (11%) and other (6%).

Over the course of the day we ensure that all questions are addressed. All participants have been asked to complete an online questionnaire 3 months after the training to assess its effectiveness.

Using questions in this way has provided a focus for the course, helping to identify where knowledge gaps and potential barriers to ACP lie.
Communication towards the end-of-life: a novel way to enhance education
Authors: Saward D , Spruyt O , Cook E , Pigott C
Published: May 2011

Caring for patients and their family towards the end of life can be both a challenging and rewarding experience for all involved. Initiating a conversation about end of life care needs was practiced through a novel, exciting and unique education session, aimed at enhancing confidence in this area of care.

Four hospitals across metropolitan Melbourne are piloting an end of life care practice change project based on the Liverpool Care pathway. Education plays a vital role in achieving practice change and as such an actor was hired to help the participants think and act outside their comfort zones. Nurses representing each of the 4 hospitals were invited to practice how they would initiate a conversation with a patient as they enter the last days of their lives.

The role play gave participants a safe forum to practice strategies and to focus on responding to psychosocial distress including depression, anxiety, anger and denial. Benefits of the session included recognising non-verbal cues, using attentive body language, acknowledging feelings and being able to use silence comfortably. Participants felt that using this way to teach communication skills was useful and beneficial in learning ways and techniques of listening to what our patients and their carers need as they enter this phase of life.
ACP is a national social movement – the effectiveness of life education programs for school children: a preliminary study
Authors: Lai W S , Yang W P , Shih Y L , Liu H C
Published: May 2011

Advance Care Planning (ACP) is a national social movement. The purpose of this study is to evaluate the effectiveness of the life educational program and to make recommendations related to its delivery. The subjects were 252 students between the ages of 7 and 13 from one elementary school in southern Taiwan. The objective of this education program is to introduce life-cycle concepts that would help the student learn coping skills for the painful events. The program lasted 40 min and was conducted as follows: (1) A brief introduction and rapport building (10 min); (2) Presentation of a Flash video which introduced the concept of the life-cycle experience (10 min); (3) An open discussion session (20 min). Discussion outlines consisted of: a) natural life processes b) dealing with grief and loss and c) healthy attitudes toward life-and-death. The results showed that the video could become a catalyst for student discussion of life-and-death issues.

Some findings

Among the students who had relatives or friends who suffered from severe illnesses or had passed away; that 91% felt that they had no one to discuss their feelings with, and that 76% thought their loved one who died suffered in pain. 23% of all students had experienced the death of a pet and the grief they felt was in proportion to the pain their pet had endured while dying. The results of this study provided insights into the students' feeling and needs related to life and death issues and also pointed out that ACP's promotion should early evolve within the daily school experience.
Initial experience of training in palliative care
Authors: Rebelo M
Published: May 2011

Until the present day the majority of medical schools continue to train students to make great diagnoses and save lives. But the reality remains that we must take care, much more than heal. Improve as much as possible the quality of life for patients until they die, instead of trying to save them at any cost. On January 14 last year, the Institute of Medicine Professor Fernando Figueira began its activities in the palliative care ward. In little over a month, we received 16 medical students of the Faculty of Health Pernambuco. They remain on the ward for 2 weeks. During this period, they have contact with patients with advanced cancer and learn how to treat pain and other symptoms, in addition to communication skills in situations of risk.

Working in interdisciplinary teams is also experienced. Upon being asked to give feedback to the end of this stage mandatory, the majority reported that despite feeling anxious at dealing with the proximity of death, they thought they had learned important skills to alleviate the suffering of people and especially the real meaning of care palliative are. That cannot heal; it is not the same thing cannot do anything. And that having an incurable disease that does not mean you will die soon after knowing this. Therefore, realized the importance of caring for these patients throughout the time they need.
The question of public support for assisted suicide or euthanasia in Canada
Authors: Wilson D , Cohen J , Mohankumar D
Published: May 2011

In 1972, the Canadian Criminal Code was revised so that suicide was no longer a punishable offense, but assisted suicide and euthanasia identified as punishable by law. Developments since then have lead to the question of whether or not the public is supportive of legalization. Few public surveys have been conducted in Canada or other countries. The University of Alberta's Population Research Laboratory was asked to add questions to their annual telephone survey. This survey is carefully conducted for results highly (95%) representative of persons aged 18+. In May–July 2010, 1203 Albertans were surveyed as expected. Data were obtained and descriptive-comparative tests completed. Amazingly, 77.3% of all responders said yes to the question: Should dying adults be able to get help from others to end their life early? Specifically: 36.8% said yes, every competent adult should have this right; 40.6% said yes, but it should be allowed only in certain cases or situations, 22.7% said no, and 6.2% gave no answer. Albertans did not differ in their support for hastened death by past experience caring for a dying person, having had a friend/family member pass away, where they lived, gender, marital status, income, ethnicity and voting preferences. Four sub-groups were not as supportive (although 50%+ were still in support): religious people, older adults, those without high school completion, and those without a living will. Albertans are surprisingly open to hastened death, with this information needing to be taken into consideration for future developments in advanced care planning and end-of-life care.
Predicting deaths – estimating the proportion of deaths that are ‘unexpected’
Authors: Blackmore S , Verne J , Pring A
Published: May 2011

Background

A key workstream within the National End of Life Care Strategy is the identification by health professionals of individuals who are in the last year of life so that they can be offered Advanced Care Planning1. End of Life Care Registers are being developed to support this by holding information on these patients. This information will be readily available to health and social care professionals who may be involved in planned or emergency care for these individuals.

Aims

There is conflicting information on the proportion of the population for whom this may be possible. This paper summarises data from a number of sources to try to estimate the proportion of registered deaths which may be unpredictable and therefore unlikely to be included on an End of Life Care Register.

Methods

Appropriate data was extracted and analysed from four key sources. The sources were critically appraised and a proportion of unexpected deaths was ascertained.

Results

Approximately 25% of all deaths in England and Wales can be assumed to be unexpected deaths.

Conclusions

This finding adds to what is already known as it should assist in service planning when considering the development and implementation of End of Life Care registers and associated service provision as it can be assumed that 75% of all deaths in England and Wales are predictable to some extent and suitable for inclusion on End of Life Care registers.
Geographical variation in Hospital Mortality – does where you live determine how you die?
Authors: Lyons P , Verne J
Published: May 2011

This study investigates geographical variation in underlying causes of death (CoD) for people that die in hospital. Our cohort includes deaths in England 2004–2008 where death occurred during an admission of ≤30 days. Approximately 60% of all deaths occur in hospital, 45% die in hospital during an admission of ≤30 days. We analysed variation by CoD and Local Authority (LA) of residence.

Previous studies 1 & 2 indicate that individuals near the end of their life have increasing need of hospital services. Our study links Office of National Statistics (ONS) mortality data to Hospital Episode Statistics (HES) admission data. The ONS and HES linkage provides a longitudinal view of the hospital services received in the month before death and provides accurate CoD information not available in HES.

Examples of the LA variation in proportions of deaths occurring in hospital in the last month of life include; Cancer (18–68%), Cardiovascular (20–47%), Stroke (25–67%) and Respiratory (26–67%). By identifying and investigating variation in; Cancer, Stroke, Cardiovascular and Respiratory deaths, this study will inform policy and planning decisions concerning the nature of patients needs in their final month of life.
Self determination – not for everyone
Authors: Binskin L
Published: May 2011

The north coast area of NSW in Australia has a high aboriginal population. Unfortunately aboriginal people overall have a lower life expectancy and a high incidence of chronic disease. Advance care planning is therefore important for this group of people but can be very difficult when subjects such as death, prognosis and not for resuscitation are not readily discussed. Self determination around end of life care planning is also not seen as a priority for many Aboriginal people.

This talk will explore the approaches used in the advance care planning process in various services that cater specifically for aboriginal people on the north coast of NSW. Approaches that may appear paternalistic to mainstream Australian society will be discussed as well as other methods and tools that shown to be effective.
Decision-making process of executing advance directives among Taiwan cancer patients in the advanced stage
Authors: Yang C L , Hu W Y , Lee H T S , Chen T R
Published: May 2011

Background

In 2000, Taiwan became the first country in Asia to enact legislation relating to the controversial topic of natural death. Unfortunately, the timing for clinical patients to execute ADs in Taiwan is clearly at the point when the patient are near death and, in these cases, ADs are primarily signed by family members. The purpose of this study was to present how the cancer patients in the advanced stage made their decision whether or not to execute advance directives (ADs).

Design

The study used longitudinal, qualitative method, applying the ethnographic decision tree modelling approach. The data collected from participation observation and in-depth interviews with 10 cancer patients to establish the model outlining their decision whether or not to execute ADs. Credibility, transferability, consistency and conformability were used to enhance trustworthiness and quality.

Results

The outcomes of patient's decision were categorized into execute, not execute and delay. The study determined 6 decision characteristics (perceived and judged one's own health condition, endeavor, considering the family member, autonomy and self-determination, quality of life and quality of death, awareness ADs) and 12 decision criteria that Taiwanese cancer patients use when deciding about whether to or not to execute the ADs.

Conclusion

Health providers should understand how patients decide whether or not to execute ADs so that the proper counselling and follow-up can be provided. The result of this study can help health providers understand the decision-making process of executing ADs among cancer patients, and hence develop advance care planning strategies.
Ethical and moral dilemmas caring for people who are dying: why we need to plan in advance
Authors: Sneesby L
Published: May 2011

Health care professionals encounter ethical and moral dilemmas on a daily basis, particularly those caring for dying patients. A person facing death may be confronted with a myriad of issues, not only personal, physical and psycho-spiritual but also decisions regarding medical treatments. Included are: resuscitation, artificial hydration and provision of nutrition, place of death and whether to continue or cease active treatment. Never before in the history of mankind have we had so many decisions to make due to longer life expectancies, modern technology and medical advancements.

There is a growing awareness of the concept of Advanced Care Planning (ACP) in Australia This concept was developed to address decision making at the end of life with the aim of respecting choice, autonomy, preferences and personal values of the individual in future time of reduced capacity. ACP enables discussion of an individual's goals, needs and values in a non-crisis situation. ACP enables people to have time to consider (in the context of their current health) what would be an acceptable and what would be an unacceptable way to live life.

This poster is a visual depiction of frequently encountered difficulties and dilemmas in end of life decision making for he patient, family and health care professional. It highlights the advantages of Advanced Care Directives to ensure the patient's will and autonomy is respected. This poster will also depict some of the challenges, barriers and possible disadvantages of ACD.
Opening electronically: raising spiritual awareness online
Authors: Groves K , Baldry C , Smith B , Sumner K
Published: May 2011

A 1 day interactive course was developed to increase staff conifdence in their ability to recognise and meet spiritual and religious needs of patients and families, as part of a cancer network wide plan for spiritual support education following a network wide audit suggesting that health professionals felt undereducated in this area of assessment and support. NICE guidance (2004) suggests that staff should be able to assess the spiritual and religious needs of patients and either provide or make provision for their spiritual and religious care.

However releasing staff for education is becoming increasingly difficult and short courses may not provide sufficient time for reflection.

Collaboration between a university technology department and a cancer network resulted in the conversion of an interactive, face to face, spiritual awareness raising course of four sessions into an online course based on a social constructivist learning.

The poster shows how the various elements of the course were converted into online formats to meet all learning styles and preferences to promote group interaction, reflection and the development of a community of practice who could successfully reflect together.

The results of the analysis of the pilot course show how participants used the course to meet their needs and their qualitative evaluation of its value.
State paternalism and individual autonomy in end-of-life care
Authors: Verne J
Published: May 2011

58% of people who die in England do so in hospital and yet surveys suggest that most people would like to die at home. There is evidence from many sources that the Quality of End of Life Care is variable and in some cases very poor. There is also mounting evidence of inequalities in quality of end of life care. The National End of Life Care Strategy (for England) aims to improve quality of End of Life Care. Tools in the armoury of a national strategy include vision, guidance documents and various forms of ‘targets’ to encourage practitioners to change practice and for use in monitoring progress. End of Life is extremely personal and there is a question whether State Paternalism aimed at a general improvement in standards may inadvertently reduce individual autonomy. Importantly the question must be raised who decides what constitutes a ‘good death’ and what happens if an individual's desires clash with the prevailing State view. Discussion will focus particularly on End of Life Registry and the use of Targets.
Evidence Base of Advance Care Planning for Patients with Advanced Disease: research evidence leading to practical implementation
Authors: Davison S N
Published: May 2011

The majority of chronically ill individuals do not participate in advance care planning (ACP) and therefore are denied the opportunity to clarify their values, treatment preferences and goals for end-of-life care. Numerous patient, health care provider and health system barriers to routinely facilitating effective ACP have been identified. Unlike other interventions, there are no consistent standards about when to initiate or how to conduct these discussions. In addition, patients' perspectives of the salient elements of ACP and their preferences regarding how ACP should be facilitated may differ from those of their health care professionals. Recently, however, systems and processes have been evolving to integrate ACP into routine clinical care for patients with advanced diseases, involving substantial behavioural change, health information technology, social marketing and legislation/policy changes.

While data from clinical trials of multidimensional ACP interventions remain limited, preliminary evidence strongly supports the value of ACP in allowing patients to prepare for death, strengthen relationships with loved ones, achieve a sense of control, relieve burdens placed on others and through all this positively enhance hope. ACP has also been shown to strengthen patient-physician relationships, achieve higher congruence between surrogates and patients in their understanding of patients' end-of-life preferences, and attain greater satisfaction with and less conflict about these end-of-life decisions. Data specific to end-of-life care practices are more limited but suggest ACP has positive outcomes such as increased hospice length of stay, less time spent in hospital and more deaths occurring at patients' place of choice.
‘Improving Advance Care Planning in Care Homes and other settings, as part of the Gold Standards Framework Training Programme
Authors: Thomas K , Stobbart-Rowlands M , Giles L
Published: May 2011

Advance Care Planning (ACP) is a pivotal aspect of the Gold Standards Framework Care Homes Training Programme used by over 2000 care homes (aged care/long term facilities) in England. The key ACP standard to be attained for accreditation is that ‘An ACP discussion is offered to and recorded for every resident and their families/carers.’ Despite some initial barriers and difficulties in introducing this within this sector, a recent survey confirms that it is extremely successfully used, with considerable benefit for all.

There will be an overview of GSF Care Homes Training Programme, describing lessons learnt, evidence of improvements in the confidence and effectiveness of staff, interviews with staff from accredited care homes describing their experiences and guidance on ACP with dementia patients.

In the second half of this interactive workshop, we will be led by Prof Joanne Lynn to explore a challenging subject in your setting, discuss the difficulties and how some have been overcome. We will be supported to develop key aims, measures and changes to address ACP or another key problem. We will hear the experiences of others in this field and help provide practical suggestions for best practice in your area.
Ensuring Quality and Choice in End of Life Care
Authors: Williams J
Published: May 2011

The presentation will provide a brief background to CQC, its role, the legislation that governs how it operates, its strategic priorities and its principal methodologies. It will identify how CQC will assess whether provider organisations are complying with regulatory requirements and the action that CQC might take if it found that organisations were not compliant.

In particular, it will focus on outcomes from CQC's Essential Standards of Quality and Safety which are key to the delivery of end of life care that meets these requirements, which will include (among other issues):

Outcome 1 - Respecting and Involving People who use services: ensuring people are involved in planning their care, that decisions and rights are respected and that people and their representatives are supported in making informed choices etc.

Outcome 4 - Care and welfare: ensuring that people have the care, treatment and support they need at the end of their life, including access to special palliative care services and pain control; that they are involved in decision making; that they have appropriate information; their families' (or those close to them with them/supporting them) wishes are respected; and that they have a dignified death with appropriate respect, privacy, dignity and comfort needs met.

Outcome 6 - Co operating with other providers: that all providers involved in end of life care work in partnership to ensure appropriate access to services, for example district nurses, palliative care services, appropriate transfers between care providers.
Advance care planning: the impact of law and public policy
Authors: Chapman S
Published: May 2011

Advance Care Planning in England has been advanced through a combination of clinical practice, legislation (the Mental Capacity Act 2005) and public policy (The End of Life Care Strategy 2008 and related regional and local strategies), which carry with them compliance, governance and training requirements. Power has been placed in the hands of the people being cared for, as well as the services and professionals who commission and provide care. This presentation will examine the holistic impact on advance care planning of this multi-levered approach to implementation, and identify the impact of the different levers, separately and collectively.
Dying in acute care
Authors: Saul P
Published: May 2011

The demography of dying in Australia, as in other developed countries, has shifted dramatically in a single generation. Cause of death, place of death and mode of dying are all unrecognisable to the generation currently facing death. The fastest growing causes of death in Australia are dementia (now third commonest) and diabetes (sixth), two thirds die in acute care, most from a decision to withhold or withdraw treatment.

Acute care has largely failed to embrace its role as the dominant place of death, and remains committed to a set of defaults that I call the DED (the Do Everything Defaults). Palliative Care has failed, in many cases, to fill the gap.

This paper details a series of projects running in NSW, Australia that attempt to link our advancing knowledge of advance care planning with existing systems of care. Specifically,

▶

introducing new admission processes that capture preferences for substitute decision makers

▶

using a risk of death tool administered by nurses to trigger a MOLST process

▶

modifying the existing deteriorating patient systems (including MET)

▶

modifying observation charts for those in the process of dying that parallels existing charts but with altered parameters. These would function as an alternative to existing end of life pathways, which have not been a great success.

The aim is to produce a ‘chain of palliation’ to parallel the dominant ‘chain of survival’.
Advance care planning influences patient's wishes for future medical treatments, and the nomination of surrogates
Authors: Detering K , Hancock A , Reade M , Silvester W
Published: May 2011

Background

Advance care planning (ACP) assists patients to document their future medical treatment wishes and to appoint a surrogate. It is assumed that discussion with patients about their medical conditions, treatment and prognosis will influence and potentially change these decisions.

Aim

To assess the impact of ACP on decision-making regarding: (1) Patient wishes regarding cardiopulmonary resuscitation (CPR), and life-prolonging treatment (LPT); (2) Whether they have and correctly report having a surrogate.

Methods

In our previous study (BMJ2010) of 154 patients allocated to ACP intervention, 125 completed ACP and108 expressed wishes regarding CPR and LPT. At study enrolment all patients were asked whether they already had any wishes on end-of-life care including CPR and LPT, and whether they already had a surrogate.

Results

▶

LPT, and CPR (%) DecisionsYesYes- DOO*NoDelegate#Don't knowCPRPre-ACP251943013Post-ACP43049170LPTPre-ACP6272902Post-ACP33636232*

depending on outcome

#

delegating decision-making to surrogate/doctor.

Nomination of surrogate

After ACP 58 patients had a surrogate, 18 of which were pre-existing. At enrolment only 10 of these correctly identified they had a surrogate, 6 said they did not and 2 didn't know.

Conclusion

Following ACP many patients change their wishes regarding CPR, and LPT, often to less aggressive treatments and often choose to delegate decision making to others. ACP also assists patients to nominate and understand the important role of surrogates.
How using secondary data sources can enhance our understanding of end-of-life care
Authors: Bowtell N , Verne J
Published: May 2011

The National End of Life Care Strategy outlined the reforms necessary to improve the quality of life and dying in England. Information is power to those who want to improve care, and a compendium was commissioned to bring together available data sources on end of life, in one unique place.

Methods

A systematic review of routine data sources on end of life care. Resources were reviewed for their relevance, coverage, temporality and timeliness, completeness and representativeness. A web-based tool was launched on the NEoLCIN website.

Results

The measure, ‘The percentage of all deaths that occur at home’, has been adopted as a national indicator (N129). However, the complexity of death and the broad range of factors influencing decision making, mean this measure should be interpreted using a much wider range of data.

To date 59 unique data sources have been identified held by 15 organisations, covering 14 topics.

Data sources are available on service infrastructure, demography and disease trajectories. Service infrastructure sources include: hospice care (2), palliative care in hospitals (3), primary care (2), residential and nursing homes (8), social care (19), emergency hospital care (1) prison (1) and carers (5). Nine data sources can be used for the assessment of population change in terms of size, composition and health status. Eight data sources provide data on illness and disease progression, to further understand place and quality of death.

Conclusion

For the first time, data sources on end of life care have been assessed and are now available on one site.
Making difficult conversations easier: the cards, the kit and the quill
Authors: Fairbank E
Published: May 2011

The preferences of patients, families and health professionals for preparations for dying have been identified by Steinhauser (JPSMSeptember 2001;22(3)).

Based on this work, CodaAlliance has developed the ‘GoWish’ card game to help patients communicate their preferences to families and health professionals.

Palliative Care The ‘Doing it in Style’ Kit, collated by the author, also builds on Steinhauser's work and others, to develop a framework of 10 steps describing effective strategies for preparing for dying. Advance Care Planning features prominently.

A Statement of Choices, derived from the Respecting Patient Choices program, Austin Health, Melbourne, Australia has been modified specifically for palliative care use, to document the wishes of people in regard to future treatments and other end of life issues. During its completion, the new form guides the discussion to allow the values and beliefs of a person to be noted, provides relevant information about life prolonging treatments, confirms ongoing palliative care measures and gives reassurance that the dying phase of the illness will not be prolonged.

The cards, the kit and the quill are combined in a new, innovative way to initiate conversations and then to help people express their desires in written form.

Feedback has been positive.

Patients feel that they remain involved in their own care, and that life will continue to have meaning and dignity.

Health professionals state that they now have resources that give structure to their professional relationships, avoid gaps and prevent crises.
Family members' views and experiences of discussing preferences and wishes for end-of-life care
Authors: Horne G , Seymour J , Payne S
Published: May 2011

Aim

This study is part of a larger cross-sectional study exploring the views of people affected by lung cancer about their experiences of discussing preferences and wishes for end of life care.

Design and method

19 family members (16 women, 3 men) took part in single, joint and group interviews conducted between: 2006 and 2008. Participants were mainly from lower socio-economic classes in the north of England, UK.

Findings

The main findings were that family members supported the person with lung cancer to ‘carry on as normal’, which included continuing routine activities, planning holidays and special celebrations. They experienced emotional upset following disclosure of the person's prognosis and expressed feelings of loneliness and isolation when their needs for information about the future were not fulfilled. They also expressed the fear of being seen as ‘disloyal’ by the person with lung cancer if they initiated the conversation about plans for end of life care. Family members supported the person with lung cancer in practical planning for the future such as planning funerals, wills and financial plans. They had their own needs for practical planning in relation to sourcing equipment and services for the future to support them in their caring role.

Conclusion

Health and social care professionals conducting advance care planning (ACP) need to consider the needs of family members about discussing preferences and wishes for end of life care, which may be different to those living with cancer. ACP interventions should be developed to meet the needs of both patients and their family members.
Palliative care: improving care at the coalface
Authors: Giugni C
Published: May 2011

NSAP is a quality improvement program available for all specialist palliative care services across Australia. It enables services to engage in continuous quality improvement through self assessment against the Palliative Care Australia standards for providing quality palliative care for all Australians, action plan development and implementation, as well as peer mentorship.

This presentation will provide an analysis of the self assessment reports received prior to 30 June, 2010, a total of 69 reports. Considering the overall priority for improvement data and the 957 action items provided by these reports, it is clear that national priorities are focused on three key areas:

Skill development in continuous quality improvement

Care planning (incorporating assessment)

Support for carers.

This analysis foreshadows a real opportunity to develop processes for working collaboratively across these core areas for improvement based on an emerging understanding of the needs of the sector, in addition to supporting system level change to enable improvement in palliative care for patients and their families/carers. NSAP has commenced a project focusing on two of the above key areas (skill development in continuous quality improvement and care planning) as a starting point. In addition to this, further analysis of data available to NSAP will continue as the aggregated data set grows with ongoing submission of self assessments.
Creating a Volunteer Training Program to support the Advance Care Planning Process
Authors: Renton J , Detering K , Fletcher J , Davis J , Silvester W
Published: May 2011

Introduction

The ageing population and the increasing need advance care planning (ACP) increase the need to bring ACP to the community's attention. Limited resources led us to develop a group of volunteers to raise public awareness through group presentations.

Aim

To create and pilot a structured volunteer program using a professional volunteer workforce to provide ACP education to community and outpatient groups.

Process

A needs analysis was completed, along with identification of gaps within our service. A volunteer selection, screening and training program were developed. The key themes addressed in the training include:

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ACP

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Public speaking

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Answering difficult questions

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Using available resources

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Processes of coordinated ACP.

Results

Following training, volunteers began presentations to service clubs (eg Rotary, Apex), church groups and hospital rehabilitation programs. Evaluation on each stage of the project occurred. Ongoing support and performance assessment of volunteers occurred to maintain quality standards and ensure presentations remain focused on ACP.

Conclusion

This pilot project demonstrates the ability to create, within existing infrastructure, a volunteer program to deliver the ACP message to the community. This process has highlighted a broader potential for volunteers to facilitate specific ACP assistance. The community ownership of the volunteer program means that the ACP needs of the community are being heard and addressed and solutions are being created from within the community.
Evolution of advance care planning in Australia – launching the new international advance care planning and end of life care society
Authors: Silvester W
Published: May 2011

Although there were small areas of interest in advance care planning (ACP) and the ability to refuse treatment in Australia as early as 1987, the implementation of and research in, ACP began in 2002 with Australian Federal government and Victorian State government funding of the Respecting Patient Choices Program. This program has been established in many hospitals, health services and aged care homes throughout Australia and has been adapted successfully to local conditions and legislation. There is an increasing body of research to support ACP, including a randomised controlled trial published in the BMJ (BMJ2010;340:c1345).

With the growing public and political interest in ACP a number of new initiatives have been undertaken including:

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new supportive legislation in several states and territories

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a National government sponsored review of existing legislation with recommendations for achieving national uniformity

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recommendations in the Australian National Health & Hospitals Reform Commission Report that ACP should be available in all aged care homes.

The holding of the Inaugural International ACP conference in Melbourne in April 2010 galvanised interest and support for ACP in Australia and raised awareness internationally, leading to the establishment of International Society of Advance Care Planning and End of Life Care -ACPEL Society with hundreds of members joining from around the world. The Society will be officially launched at a London conference.
What do journalists think about end-of-life care and advance care planning? A media insider's account of reporting from the front line of the end-of-life care debate in Australia
Authors: Davies J , Silvester W
Published: May 2011

Australia has a unique history in its experience with end of life care. It was the first place in the world to – briefly- legalise euthanasia. But there has been minimal public debate about Advance Care Planning (ACP) and very little media attention.

This presentation aims to take delegates behind the headlines and into the real world of editorial decision making that determines what is- and what isn't- news worthy when it comes to generating or responding to stories about dying with dignity.

You will hear what it is really like as a reporter to write about this complex and ethically challenging area of social policy within the confines of an industry that views the world in black and white.

Is ACP simply not sexy enough for mainstream media or are there lessons to be learned from the pro-euthanasia lobby whose tactics have been so successful in helping to shape the end of life care debate in Australia?

As a former senior journalist at Australia's leading newspapers,the presenter has written from all vantage points on the subject. She will take delegates through some of those stories and the people behind them.

The presentation will illustrate why it is imperative for health professionals working in ACP to make time and muster the courage to take journalists into their world if they really want to make a positive difference to the way we all die.

The media principles to be discussed have a global application.