bluuebunny/crossref_metadata_2025 huggingface dataset:
Handing over the reins – establishing long term strategies for embedding advance care planning in rural and remote communities in Australia
Authors: Ashley C
Published: May 2011

Establishing effective advance care planning (ACP) implementation programs in communities is challenging at the best of times – but when the region extends to over 166 000 square kilometres of rural and remote country, and human resources are limited, strategies need to have the ‘wow’ factor in order to ensure sustainability.

In 2009, a project to introduce ACP was set up in southern NSW as part of a state wide approach. Since that time, much has happened, including structural reform at state level resulting in changes in regional boundaries, cessation of funding for the continuation of the project and the worst floods in 70 years!

In order to ensure the sustainability of the program, the last year has seen a shift from ‘implementation’ of ACP to a ‘handing over the reins’ approach. Various activities have been introduced to consolidate ACP at a local level. These have included working with health managers to embed ACP in quality improvement and risk management activities, creating links with local divisions of general practice and with community groups, working with staff and residents in aged care facilities, establishing a range of accessible resources for health professionals, and passing on responsibility for education to local educators and clinicians.

The presentation will demonstrate that evidence is mounting regarding the effectiveness of these strategies in moving ACP from ‘project’ status to being embedded as an important component in ensuring effective health delivery.
An Eastern world view of advance care planning
Authors: Hui Edwin C
Published: May 2011

A study of 300 cancer patients in Hong Kong shows that 92% of patients include themselves in decision-making, while 71% include their family and 65% their doctor. 68 percent of patients who include themselves in decision-making prefer to do so jointly with others; 55% want to join both the doctor and family to form a triad; 13% want decision-making with the family as a dyad and exclude the doctor; only 3% want a decision-making dyad with the doctor without their family. Less than 5% of patients want decision-making by ‘doctor-alone’, ‘patient-doctor’ or ‘doctor-family’ dyads and <1% of patients desire decision-making by ‘family-alone’.

In this study, only 25% patients have discussed their post-competent treatment preferences with other people; 93% patients have never heard of AD, and 25% refuse to discuss AD. After explaining AD to patients who are willing to talk about it, patients agree that AD would protect their autonomy in their post-competent treatment choices. Yet, two-third of patients refuse to sign an AD instantly, and prefer to leave oral instructions to specify their post-competent treatment preferences. Among patients who refuse to sign an AD, 42% want their family to make decisions when they become incompetent. It seems that Chinese cancer patients only rely on their family in their post-competent decision-making, but refuse to delegate decision-making to their family when they are still competent. The implications of these findings will be discussed.
Use of advance care planning – a European perspective
Authors: Simón P
Published: May 2011

Advance Care Planning (ACP) can be considered the second stage of a movement which tries to incorporate patient's decisions to end-of-life (EOL) healthcare decisions. The first stage is focused on the development of Advance Directives (ADs). Nowadays there is a broad consensus about the inadequacies of these written documents when they are filled and applied in a bureaucratic manner, disconnected of the clinical context and in absence of a communicative environment. ACP gives this more adequate perspective to the use of ADs and even can do without them because the end, the incorporation of patient's perspectives and wishes in EOL decisions, can be reached by other means. But in my opinion, it is not easy to reach the second stage without going first through the first stage, even doing it in a fast manner. So, the scarce development of ACP approach in Europe is coherent with the scarce development of ADs. The situation of ADs in Europe is characterized by its disparity between the different countries of the Region. We can find countries where specific laws on the issue have been adopted (UK, Austria, Spain, Hungary, Belgium, The Netherlands, Finland, France, Germany) and countries where there is no specific legislation (Greece, Italy, Norway, Bulgaria). But there are significant differences between all these regulations, for example in relation with the binding force of such documents. These differences between European countries help us to understand the great differences between ACP developments. Countries such us UK, Belgium, the Netherlands or Germany, with a strong regulation on ADs are developing the ACP approach in a fast manner. Spain has a particular status: broad legal development with low clinical impact and scarce development of ACP.
Using stages of planning to improve the success of advance care planning
Authors: Hammes B J , Briggs L A
Published: May 2011

What we mean by ‘advance directives’, in the United States has been largely determined by the creation of laws and regulations. The unintended consequence of this approach has been the creation of advance directives as one-time, singular events intended to be effective for all individuals regardless of age, stage of health, or changing goals and values. The literature in the USA has clearly demonstrated the failure of this legalistic approach.

Advance care planning (ACP) as a process of communication has emerged as an alternative to this failed approach. However, ACP is not a ‘one size fits all’ intervention. It is unrealistic and unhelpful to expect individuals to make healthcare decisions that will apply to all situations that may happen for some future point in time. Rather, ACP is more effective when it is focused on the individual's stage of health and the realistic decisions that may be needed for that stage. This staged approach to planning includes person-centred interactions and shared decision-making with professionals who are well trained in a standardized approach.

In this presentation the speaker will discuss the advantages of one approach to the stages of planning, described as First (ie, basic ACP for the healthy adult), Next (ie, disease-specific ACP for progressive chronic illness with complications), and Last Steps (ie, those expected to die in the next 12 months). This stage of planning approach makes it possible to identify the content of planning relevant for the person at each stage, when to do it, how to document it and how to train professionals to competently assist in the planning process. Quality improvement activities can be specifically designed to evaluate if the goals of planning are achieved.

This staged approach to planning is individualized and realistic. It builds care planning into the routines of care, enhances person-centred decision-making and provides a system for reviewing and updating plans over time. It is more likely an individual's goals and values will be known and respected.
Advance Care Planning: A Community Engagement Value Based Approach
Authors: Robinson C , Fulton T , Collins D , Lacasse B , Wren A M , Myers L , Nicol Judy , Thompson Jennifer
Published: May 2011

This workshop focuses on the design and ongoing implementation of an innovative advance care planning (ACP) initiative in one Canadian Health Authority. The initiative took a values based, community engagement approach to developing an ACP program in two communities. Developmental evaluation systematically informs the emerging programs. The initiative is in its second year and successes to date include: a shift in the relationship between the health authority and participating communities in response to a new way of ‘doing business’ where change is not mandated from the ‘top down’ but emerges ‘in the middle’ through active collaborative engagement; capacity development within both the health authority organizational team and the participating communities; a community specific vision of ACP that is broader than health care decision making; and, a comprehensive education program for ACP facilitators. This innovative approach has been challenging to enact in a system where a traditional policy based orientation to program development and outcomes based evaluation are the norm. Instead, success has been determined via real time decision making that aligns with the values framework underpinning the project. Multiple course corrections have occurred such as adopting developmental evaluation and moving away from an evaluative logic model. The responsive, values based process will be discussed, strengths and challenges identified and successes highlighted.
An Australian state's experience of implementing advance care planning: snapshots from Victorian health services
Authors: Doran N
Published: May 2011

The structured, supported platform provided by the Respecting Patient Choices program has been the foundation and precursor to the development of innovative and responsive Advance Care Planning (ACP) models that address the varied needs of our diverse population.

The introduction of ACP in Victoria has initially been through our health services and via the Respecting Patient Choices program. Austin Health, a major metropolitan health service was able to put a compelling case to the Victorian Government to introduce the Respecting Patient Choices program into our health services, with eight health services currently participating and with Austin Health mentoring and supporting implementation.

This structured approach has had many benefits in terms of lessons learnt and has been the springboard for innovation in the development and evolution of ACP implementation and has allowed Victoria to explore and support a range of innovative approaches to implementing ACP.

A series of semi structured interviews with ACP Clinical Leads and Program Managers from a range of Victorian health services identifies the models of ACP implementation, key learnings, outcomes and ongoing challenges that are influencing current and future program direction.

The data is informing the body of evidence relating to ACP implementation and provides useful guidance for the development of:

▶

ACP programs, in terms of translating ACP into local environments and adopting and adapting to address local needs;

▶

key performance indicators;

▶

an evaluation framework; and

▶

policy to drive and support ACP.
Gold standards framework annual meeting. Improving end of life care using gold standards framework
Authors: Thomas K , Stobbart-Rowlands M
Published: May 2011

Over the last century the way we die has changed and there has been a growing awareness and consideration of end-of-life care as a society. Now, we have the chance to live longer with serious illnesses, to live in the context of our dying, to plan our end-of-life care, to consider the kind of life and death we wish to have through advance care planning discussions – highlighting and improving this further is the purpose of this ACPEL conference.

In England, the challenge of improving end-of-life care for all was moved a step-change further by the comprehensive NHS End of Life Care Strategy (2008), helping to mainstream end-of-life care within health and social care. The Strategy supported introducing advance care planning discussions early, and recommended that ‘every organisation involved in providing end of life care will be expected to adopt a coordination process such as the Gold Standards Framework (GSF)’.

GSF is an evidence based whole system approach, that aims to improve the quality, coordination and organisation of care leading to better patient outcomes in line with their wishes. It incorporates advance care planning as a key step in the process of integrated delivery. The wide range of training programmes run from the National GSF Centre, enable generalist frontline staff to provide quality care for people nearing the end of life, providing teaching, tools, evaluations, resources and guidance. An update will be provided during the session.

The GSF Training Programmes includes those in Primary Care (basic GSF established 2000 and widely used by most GP Practices), care homes/long term facilities, Acute Hospitals, Domiciliary Care, Community Hospitals, spiritual care etc. The new practice-based distance-learning Next Stage GSF programme ‘Going for Gold’ was launched to improve primary care further. Over 2000 care homes have undertaken the 9–12 month practical GSFCH Training and up to 200 homes/year are accredited. The Acute Hospital programme is in its second phase, with benefits demonstrated, but many challenges.

One of the key ways forward in future will be the integration of such coordinating frameworks involving frontline generalist providers across boundaries of care, to provide seamless integrated consistent support using a common language. Some examples of best practice using GSF will be described and some planned developments described.
Making Person Centred Care A Reality
Authors: Wigley L , Bailey G
Published: May 2011

This workshop will showcase innovative work that was led by Helen Sanderson Associates, which culminated in developing ‘Living Well: Thinking and Planning for the End of Your Life’. This work brought together Hull City Council Adult Social Care, Humber and Yorkshire Coast Cancer Network, City Healthcare Partnership, Macmillan, Hull Churches Home from Hospital, Dove House Hospice, patients and carers to consider how person centred thinking tools could be used within a patients journey to increase the quality of their experience of palliative and end of life care.

One example of its practical implementation is Edna. Edna is an older person who has dementia. By training and supporting staff in using the tools in their conversations with Edna and her family, staff have gained a better insight into who she is as an individual, her preferences, beliefs and care needs. We have mapped Edna's clinical journey and identified where these tools will provide information to inform health and social care professionals to understand what is important to Edna and what best support looks like.

This work is an innovative mechanism for working across health, social care and the third sector. The work adds to what is already known, by providing a method for gathering person centred information that can be used in Advance Care Planning to ensure the care provided is the best possible quality for that individual and their carer. Overall, this workshop will provide a clear example of how person-centred care can be achieved in current service provision.
A complex regional intervention to implement Advance Care Planning in one town's nursing homes: results of and lessons learned from a controlled inter-regional feasibility study
Authors: in der Schmitten J , Rothärmel J S , Rixen S , Hammes B , Briggs L , Wegscheider K , Marckmann G
Published: May 2011

Background

In Germany, recent legislation confirms that advance directives (ADs) have to be followed if they apply to the medical situation, but regional implementation of advance care planning (ACP) has not yet been described.

Methods

In a longitudinal controlled study, we compared 1 intervention region (4 nursing homes (n/hs), altogether 421 residents) with two control regions (2×5 n/hs, altogether 985 residents). Resident inclusion went from 1 Febraury 2009 to 30 June 2009, observation lasted until 30 June 2010. Primary endpoint is the prevalence of ADs at follow-up, 17 (12) months after the first (last) possible inclusion. Secondary endpoints compare relevance of ADs, involvement of general practitioners (validity), process quality and clinical outcomes. The regional multifaceted intervention on the basis of the US program Respecting Choices, beizeiten begleiten, addressed the related caregiver network.

Results

Of 1406 residents reported to live in the 14 n/hs plus an estimated turnover of 176 residents until the last possible inclusion date, 645 (41%) were willing to participate. Response rates were 38% in the intervention region and 42% in the control region. Non-responder analysis shows an equal distribution of sex and age but a bias towards dependency on nursing care in the responder group. Analysis of outcome data will be completed by May.

Discussion

To our knowledge, this feasibility study is the first to implement a comprehensive ACP approach to regional n/hs and the related caregiver network in a controlled design. System factors are identified that seemed to promote / impede implementation of the ACP program and that may inspire further research.
The Physician Order for Life-Sustaining Treatment in Case of Emergency (POLST-E) as an integral part of the patient advance directive: what are nursing home residents' preferences resulting from a facilitated advance care planning process?
Authors: Marckmann G , Rothärmel J S , Hammes B , Briggs L , Mortsiefer A , in der Schmitten J
Published: May 2011

Background

Treatment decisions in emergencies when the patient is (acutely) incapable pose a challenge for nursing and emergency staff, especially if the attending physician and/or the designated proxy are not available. In Germany, advance directives usually provide insufficient guidance for these situations.

Methods

In a controlled regional intervention study to implement advance care planning (ACP) in one town's nursing homes and the related caregivers' network, we introduced a new form, the POLST-E. It differs from many POLST forms common in the US in two major respects: (1) it is only available as an integral part of a comprehensive advance directive resulting from a facilitated ACP process; (2) its scope is restricted to specific options for emergency treatment.

Results

We presented a descriptive analysis of all POLST-Es completed in the intervention region during the study period, and compare it with any ACP for emergencies found in the control region (data analysis will be completed by May).

Discussion

The POLST-E bridges the gap between individual planning and honouring the resulting plans in emergency situations by professionals. It therefore is a crucial tool for effective ACP. Further, it changes the facilitation process fundamentally in that patients or proxies are now offered choices with regard to medical emergencies arising from current (not only future hypothetical) health statuses – a choice missing in the traditional development of advance directives in Germany.
Promoting advance care planning in Taiwan – a practical approach to Chinese culture
Authors: Hsieh J G , Wang Y W
Published: May 2011

In Taiwan, people are deeply influenced by traditional Chinese culture. People do not want to talk about death in daily conversation. Discussing with elders about the death is still a taboo. We need to develop a culture sensitive strategy to promote advance care planning (ACP) in Taiwan society.

The objectives of this study are to develop a community program to promote ACP discussion among elderly people. We conducted four sessions of focus group and a total of 30 volunteers participated in the study from August to November 2010. The major themes of the focus group included the value of life, previous experiences about medical care, and opinions about ACP. The results of the researches suggested that an introduction video ‘The Four Seasons’ followed by a video about ACP ‘Metaphor of three wise monkeys’ is most appropriate to motivate ACP discussion in a ‘refuse to talk about death’ society. The contents of these two videos were in accordance with Chinese culture. Promotional brochure for ACP also developed with specific cultural characteristics. The feasibility and acceptance of the process were assessed by the palliative care experts and the residents in the community.

The ACP programs for local culture can provide culture-sensitive choices and reflections for elders in Taiwan. They are more likely to discuss their own end-of-life decisions through this program.
Understanding the meaning of end-of-life discussions and related decisions among older South Asians living in East London: a qualitative inquiry
Authors: Venkatasalu M Ramasamy , Seymour J , Arthur T
Published: May 2011

Background

South Asians constitute the single largest ethnic minority group in the United Kingdom, yet little is known about their perspectives and experiences on end of life and its related care.

Aim

This paper examines attitudes and expectations that older South Asians expressed towards the discussion of death and dying and decision making.

Methods

Five focus groups and 29 in-depth, semi-structured interviews were conducted with total of 55 older adults aged between 52 and 78 years. Participants from six South Asian ethnic groups were recruited from 11 local community organisations. Constructive grounded theory was used as data analysis approach.

Findings

Trust is category that captured views and experiences of participants that consists two key themes. The theme ‘avoidance of discussion’ relates to the relative absence of discussions around death and dying among participants. Participants neither expected to have discussions about their own death and dying within their family, nor to assume any involvement in related issues of decision making. The second theme ‘locus of authority’ relates to beliefs and experiences about the delegation of decision making to family members.

Conclusion

Older South Asians living in East London make efforts to adhere to important social and cultural values relating to death and dying, and rebuild and adapt those values during the challenges of living in an emigrant society. Future research should explore the perspectives of second-generation adult children towards end of life care decisions.
The evolving role of a ‘clinical ethicist’
Authors: Detering K , Silvester W
Published: May 2011

Background

Austin health is a 600 bed tertiary hospital with a wide range of acute and sub acute services, including a number of specialist services. Many patients have extremely complex medical and ethical issues that are often raised during the care of these people. In order to address such concerns a ‘clinical ethicist’, who is an experienced doctor has been employed.

Aim

To perform a retrospective audit of consecutive cases referred to the clinical ethicist.

Results

104 patients, mean age 66 (range 19–102), 64% male were seen.

▶

Reason for referral - (≥1 reason per patient).

▶

Unrealistic patient/family (34%).

▶

Poor or unrealistic medical assessment of situation (53%).

▶

Patient/family in need of advance care planning (44%).

▶

Outcome of referral – treatment related (≥ 1 per patient).

▶

Patient died or discharged (63%).

▶

Decision to limit treatment (64%).

▶

Advance care planning occurred (45%).

▶

Treating doctors ignored recommendation of clinical ethicist (5%).

▶

Outcome of referral – people related (≥1 per patient).

▶

Staff Education (71%).

▶

Improved staff morale (31%).

▶

Support of medical decision making (41%).

▶

Patient/family support (42%).

Patient deaths were, on average 70 days (range 1–619) from initial referral.

Conclusion

Establishment of the clinical ethicist role has provided support and education to staff and patients. Although not specifically set up to focus on end-of-life decision making and care, the majority of patients seen have died. This role also has an important link in referring patients/families for advance care planning.
International perspectives on advance care planning
Authors: Barwich D , Hoffmann C , Tayler C , Roberts D
Published: May 2011

Fraser Health Authority in British Columbia, Canada serves 1.5 million people, spanning over 12 communities with 26 000 employees and has been a provincial and national leader in advance care planning (ACP) for the past 7 years. Our goal is to continue to promote and enhance ACP across our health system by promoting conversations with patients and families and improving communication and documentation of decision making in all programs of Fraser Health.

In June 2010, we embarked on the Talking it Thru: Medical Orders for Scope of Treatment initiative to further embed ACP practices into all programs with key clinicians and populations clearly identified. This presentation will assist learners to gain further understanding of the importance of systematic engagement in order to embed and sustain ACP in large healthcare organizations and to enhance standardized practices for quality patient-centred care at end of life. The End of Life program provides project leadership and supports programs as they assess current practices, identify gaps and opportunities and plan for implementation.

Phase One of this 3 year project included engaging programs by identifying leadership, facilitating Focus Groups and helping program leadership plan for implementation. 16 Focus Groups were held with over 200 clinicians. Input from program areas such Aboriginal Health, Home Health, Primary Care and Medicine as well as discipline areas such as respiratory therapists, social workers and hospitalists have proven invaluable to help shape policy, develop tools and resources and to address educational needs.
Developing guidance in ACP for health and social care staff: experiences from the UK
Authors: Seymour J , Henry C , Sherwen E
Published: May 2011

In the UK, advance decisions to refuse treatment have been legalised under the Mental Capacity Act of 2005. They are one aspect of the wider process of advance care planning (ACP). A process of consultation during 2007 led to guidance for ACP being developed for health and social care professionals working in England (second edition published in 2008) by the National End of Life Care Programme which has been widely used for education and practice development. Debates about ACP in England subsequent to publication of this guidance has drawn attention to a number of areas of confusion and disagreement which could impede the development of practice in ACP. These include debates about whether ACP should be focused on preparation for future loss of capacity or whether its scope should be broader. These debates are mirrored in the research literature. This presentation reports work undertaken to revise and refine the guidance to address these areas and to promote a broad consensus across experts in the field and front line staff. The exercise to develop this guidance sheds new light on some of the challenges of addressing potentially divergent perspectives at a policy level and on issues to be considered when providing practical guidance in a complex field to underpin ACP practice and education on the front line.
Introduction to the national (England) end of life care intelligence network website
Authors: South J Verne
Published: May 2011

The National End of Life Care Intelligence Network and its website were launched in June 2010. It is a national resource for policy makers and planners and providers of End of Life care as well as researchers, media and the public. The aim is to bring together in one easily accessible place evidence on End of Life Care particularly using data sources. The website (http://www.endoflifecare-intelligence.org.uk/home.aspx) has several domains: Local profiles by Local Authority (numbers and rates of deaths by major cause, age and place of death); Reports (Deaths In Older Adults in England; Variations In Place of Death in England; Deaths Registered as Occurring ‘Elsewhere’; External Causes of Death); A compendium of data sources; Advice and information – signposting for patients, their relatives and carers; Email alerts – sign up to receive regular information; News and events – keep up-to-date with developments. It is planned to expand the functionality by links with academic partners to bring more of the research evidence together with the routine data analyses. The concept is new and innovative and has already been widely acclaimed as a useful resource for all those working in the End of Life Care field. Commissioners and providers are actively using the website to inform changes in care at a local level. National outputs are informing the development of National Policy.

There is no other web-based resource which is similar. It provides a completely new approach to accessing National and Local information. The website and its functionality will be demonstrated to show how its use can advance knowledge and understanding of the quality of End of Life Care.
Pattern of hospital admission in the final year of life
Authors: Lyons P , Verne J
Published: May 2011

This study examines the patterns of hospital care received in the final year of life for the disease groups; cancer, cardiovascular disease (CVD), respiratory and stroke. This will inform policy around End of Life Care pathways and costing models for hospitals.

Our study moves beyond the historical cross-sectional approach, directly linking hospital records to individual death records. The Office of National Statistics (ONS) and Hospital Episodes Statistics (HES) linkage provides a longitudinal view of the hospital services received 12 months before death. Using this linked data we have investigated the frequency, length and type of admission (elective, emergency) received.

Our cohort includes individuals that died in England 2004–2008 and had at least one admission to hospital in the final year of life. We analysed how this varied with underlying cause of death, age, gender, deprivation and Local Authority (LA) of residence.

Our study found that 78% of all ONS deaths had at least one hospital admission in the year before death; 88% of cancer deaths and 66% of CVD deaths had an admission. The average number of admissions a person will have in the final year of life is 3.5, this varies from Cancer deaths at 5.1 admissions to Stroke deaths with 2.3 admissions. The average number of bed days in the final year of life is 29.7; 36 days for stroke deaths and 18.1 days for CVD. The average length of stay in the final year of life is 8.5 days; 15.7 days for stroke and 5.7 days for Cancer deaths.
The legal status of guardians in advance care planning in Australia
Authors: Schyvens M
Published: May 2011

Australia, like many countries, is currently debating the optimum means of permitting individuals to engage in advance care planning within the confines of our respective legal systems.

‘No decision without me’ is a message in accord with the UN Convention on the Rights of Persons Disabilities. This convention is an important consideration for our legal systems in developing means of validating people's advance care planning wishes. It also brings with it great challenges for guardians as substitute decision makers when called upon to engage in advance care planning.

These themes will be the focus of a presentation outlining:

▶

Current recognition status of advance care planning in Australian jurisdictions;

▶

The debate for the need for new legislation in Australia to give recognition and framework to advance care planning;

▶

The challenges facing appointed guardians called upon to engage in advance care planning, the limitations on their authority and the impact of the UN Convention; and

▶

The importance of developing uniform language when engaging in advance care planning to enhance legal validity and community acceptance – an examination of the current development of an Australian national framework for advance care planning.
Advance care planning in dementia: great in theory, a challenge in practice
Authors: Robinson L , Dickinson C , Bamford C , Exley C , Hughes J
Published: May 2011

Introduction

Advance care planning (ACP) allows people to record their wishes about future health care choices before their capacity is lost; in dementia, where capacity loss is inevitable, ACP has the potential to facilitate a person-centred care approach to care. This study explored the views of both professionals and people with dementia and their families about how, and if, ACP is implemented in dementia.

Method

Focus groups (n=14) and one-to-one interviews (n=17) were used to explore the views of a wide range of professionals (health and social care, advocacy and legal services) involved in dementia care; 1–1 interviews were carried out with people with dementia (n=17) and their main carers (n=29).

Results

ACP is not routinely integrated into dementia services although some examples of good practice exist. Contrary to guidance, ACP discussions often occur late in the illness, with subsequent proxy decision-making. Professionals find ACP challenging; there appear to be additional difficulties in dementia around responsibility, assessment of capacity and legal dilemmas. People with dementia and their families do plan ahead in many areas for example, making wills and lasting power of attorney for finance. However, making plans for future healthcare appears more difficult due to a preference to ‘take one day at a time’.

Conclusions

ACP offers opportunities for people to plan ahead but is currently not a routine part of dementia care. Additional training for professionals may help overcome some of the barriers and hence support the people with dementia and their families who do wish to undertake this.
Developing planning for the future in a memory service
Authors: Burleigh S , Poppe M
Published: May 2011

The Modernisation Initiative End of Life Care Programme aim is to achieve excellent end of life care for all in Lambeth and Southwark, including those with dementia and their carers.

Earlier diagnosis of dementia can enable the person affected to indicate their future care and treatment preferences through completing a future care plan. Later, in the more advanced stages of dementia, there may be deterioration in cognitive functioning which affects people's capacity to express their wishes.

Prior to the intervention, the views and opinions were sought from service users and staff. These were of the usefulness of the intervention, the questions in the document as well as style and language.

An implementation study was set up to deliver future care planning to people who received a diagnosis of dementia though a new memory service.

The Nurse Advisor developed and delivered training for mental health care professionals in future care planning using interactive forum theatre and role play. This training was conducted and evaluated as part of the induction of a new memory service as well as to Community Mental Health teams for older adults.

Following training, facilitation and role modelling by the Nurse Advisor, people with dementia were offered the opportunity to plan for their future. Staff were supported in reflective learning sessions.

Following ethical approval, the researcher conducted interviews with people with dementia and their families to evaluate the acceptability and effectiveness of the future care planning conversations and their feelings about these conversations.
The cost-benefits of end-of-life training in care homes with dementia patients
Authors: Gandy R , Roe B , McClelland B , Ashton S
Published: May 2011

An education and training initiative took place in 2006 in Greater Manchester for staff in five local care homes.

Aims

The aim was to improve the quality of end-of-life (EoL) care for older people with dementia, through the use of established EoL care tools, including advance care planning. As part of a full evaluation, an economic appraisal examined the activity, outcomes and finances.

Methods

Data was collected on patients from the homes that died in the year before and the year after the initiative. The activity and costs of training and direct support to the homes were collected, with cost-benefit analyses subsequently undertaken.

Results

The full evaluation showed many resultant quality benefits: improved communication between nursing, care and medical staff; better symptom management; and, support for family members and carers.

The proportion of patients that died in their preferred place of death increased from 48% to 63% following the initiative. Advance care plans were in place for 83% of those dying in the care homes, but none of those dying in hospital. The LCP was used for 67% of those dying in the care homes.

A cost-beneficial approach is affordable, but PCTs cannot expect cash savings, to fund education and training programmes, unless there are associated reductions in admissions to hospital, which is a primary aim of the Gold Standards Framework.2

Conclusions

The analyses evidenced that training care home staff in EoL care tools is affordable and cost-beneficial, and quantified key variations relating to whether patients had advance care plans.
A model for ethical CPR decision-making
Authors: Hayes B
Published: May 2011

Half a century after the introduction of CPR (cardiopulmonary resuscitation), advance decisions to withhold CPR remain problematic. Previous research has identified inconsistent decision-making by doctors who largely receive no formal teaching in how to approach this decision – a decision about a treatment that has poor outcomes for many patient groups.

This presentation is based on research undertaken as part of a PhD study that investigated how decisions are currently made about CPR. In this qualitative research, a total of 33 senior doctors, junior doctors and nurses were interviewed about the CPR decision-making process, the issues arising, dealing with disagreement and the experience of performing CPR.

The interview transcripts were analysed thematically to identify ethically significant elements within the decision, to which normative ethical principles could be applied, in order to develop and describe an ethical approach to CPR decision-making.

This approach recognises the separate technical and ethical elements of the CPR decision. It also identifies the ethical significance of the CPR discussion and that it is in the process of the discussion that many of the difficulties inherent in the decision can be resolved to achieve consensus. Four clinical patient groups have been identified, each requiring a different purpose for the discussion. Identifying the aim of each discussion facilitates a more specific patient focussed discussion.

This research demonstrates that it is possible to achieve a consistent approach to ethical CPR decision-making. This is an approach that could be taught to doctors and nurses.
Rethinking the ethical foundation of advance care planning
Authors: Robinson C
Published: May 2011

Research aims

This interpretive descriptive study was designed to explore the process of advance care planning (ACP).

Study design and methods

Patient-centred ACP was undertaken with persons diagnosed with advanced lung cancer and a significant other. Nine family dyads participated (18 participants; 15 conjoint interviews). Follow-up interviews occurred 3 and 6 months after the ACP conversation. The participants were asked about their experience of ACP and its impact on their thinking, conversations and relationships. All interviews were audio-recorded and transcribed verbatim. The accounts were analyzed using the constant comparison method.

Results

Most dyads completed the ACP process. Although the conversations were difficult, the dyads appreciated the opportunity to engage in these important and intimate discussions and evaluated the conversation positively. While the researcher structured the topics of the ACP discussion, the dyad led the interactional process. The process that unfolded during the ACP conversation was deeply relational and was characterized by mutuality, interdependence and shared decision making.

Conclusions

The ethical foundation of ACP has been rooted in individual autonomy and patient self-determination. However, the concept of individual autonomy is contested and there have been many theoretical critiques. Further, the importance of family involvement in all aspects of end-of-life care has been widely acknowledged. Yet, the orientation to individual autonomy remains, which invites clinical tension about the appropriate role of family in ACP related to the notion of avoiding ‘undue influence’. The findings of this study support the adoption of a re-visioned ethical stance encompassing a relational approach to autonomy.
Patients', family members' and healthcare staffs' opinions about existential issues as a base for an educational intervention
Authors: Henoch I , Danielson E , Strang S , Browall M , Melin-Johansson C
Published: May 2011

Objective

To explore patients', family members' and healthcare staff's opinions about existential issues important to patients with cancer and their relatives.

Methods

Two integrative literature reviews were conducted about existential issues among cancer patients and relatives, and interventions to meet these issues. Four focus groups were conducted with healthcare staff working with cancer patients at different stages about patients' existential issues, and staff's responsibility when existential issues are raised.

Results

In the patient review, existential issues were divided into two themes: struggle to maintain self-identity and threats to self-identity. Relatives' existential issues concerned living both in and beyond the presence of death, with reminders of death, compelling them to respond to life close to death and seek support. Few interventions directed to patients or relatives applicable to everyday healthcare practice were found. Focus groups with staff revealed four categories of patients' existential issues, life and death, meaning, freedom of choice, relationships and solitude. According to staff, their responsibility concerned achieving an encounter with the patient.

Conclusion

Results from three studies are congruent in that, patients, relatives and staff agree, although in different ways, about the importance of existential issues to patients and relatives. Healthcare staff was aware of the importance of existential issues and are to some extent confident about how to act when these issues are raised by the patients.

Ongoing studies

The project group now continues implementing findings from these studies in an educational intervention to healthcare staff in different settings, and planning interventions to patients and relatives.
A common sense approach to improving advance care planning using the ‘Plan-Do-Study-Act’ cycle
Authors: Wilkinson A , Lynn J
Published: May 2011

Advance care planning (ACP), in its most sophisticated form, is a comprehensive, ongoing, and holistic communication between a physician and his or her patient (or the patient's designated proxy) about their values, treatment preferences, and goals of care. However, treatment decisions at the end-of-life are very complex, making comprehensive ACP extremely challenging: everyone is reluctant to talk about death; clinicians find it easier to offer hope and another treatment or technology rather than comfort and support; and families find it hard to believe that treatment will not restore health. A number of ACP programs have learned how to successfully meet these challenges, many using the process of ‘rapid-cycle’ Quality Improvement (QI) to achieve ‘breakthrough’ change and improvements in practice. This presentation provides guidance and real-life examples for implementing ACP practices in local settings, summarizing over 10 years of successful ACP and related clinical QI work in the US with hundreds of health care professionals and social service providers across the gamut of service delivery silos. Key points covered in the presentation are ways to: target appropriate patients; embed ACP practices in busy healthcare settings; conduct rapid-cycle QI activities and test ‘front-line’ ideas and successful practices in daily practice; and change the ‘usual’ healthcare delivery setting culture by making QI and patient safety a top priority. Ensuring the centrality of the patient and family's voice in treatment decision-making is one of the most important goals for achieving patient/family-centred care. This presentation demonstrates how QI can help improve ACP.
Bedfordshire and Hertfordshire Advance Care Planning Educational Model
Authors: Russell S , Fowler C
Published: May 2011

The model1responds to the challenges of implementing guidance on advance care planning using levels of education need, and the EoLC workforce levels. It is collaboration across Beds and Herts End of Life Network: 3 PCTs, 2 Cancer Networks, 8 independent hospices, 5 acute trusts, 3 community trusts. The coordinated approach is to ensure quality and standardisation. Guidance alone is not able to embed the advance care planning process in practice. The model1provides templates for facilitators to deliver the variety of education required for different audiences which include patients, carers and the public. The model1uses national documentation and resources for professionals and patients.

Steps in the model1are: identifying the workforce, identifying different levels of education, delivering education, measuring confidence levels, evaluation, and measurement of impact and consideration of sustainability.

The model1includes, raising public and professional awareness of what ACP is and who it should matter to, delivering the skills to instigate it and the skills for teaching ACP. A blended learning approach includes face to face learning, e-learning using the National e-learning modules and the East of England EoLC care home education project

The model1is part of implementation guidance, including: communication, information transfer, documentation, process and a competency based learning framework, so that learning is part of a wider learning experience in End of Life Care.
Passion, persistence and pennies
Authors: Barwich D , Hoffmann C , Tayler C , Roberts D
Published: May 2011

This interactive session will highlight the work of Fraser Healthy Authority (FHA) in British Columbia, Canada over the past 7 years to champion the development, implementation, and dissemination of its Advance Care Planning work for 1.5 million people throughout our system of care – 12 acute cares sites, 7500+ residential/long term care beds, and community programs. The FHALet's Talkprogram, with a passionate commitment to system level change and education, has developed user-friendly, culturally sensitive and easily accessible tools and resources which have been adapted by health and community organizations across Canada, USA and New Zealand for use in their jurisdictions.

Our vision has led to a provincial Community of Practice with representatives from government, all BC regional health authorities, disease specific agencies, first responders, as well as the Canadian Hospice Palliative Care Association (CHPCA) ACP Project Task Group to continuously share resources and experiences. We have also been able to influence policy and uptake at a provincial level with a recent decision to adapt the My Voice Workbook and to place FHA'sLet's TalkDVD in all community libraries. Advocacy has resulted in new Advance Directive legislation which broadens options for documentation and choice at end of life.

In partnership with Calgary Health Region, Health Canada and the CHPCA, we have been an important leader to support a National Symposium, Consensus and framework documents, and other initiatives that have promoted a Canadian approach to ACP implementation and a national framework and research agenda.