bluuebunny/crossref_metadata_2025 huggingface dataset:
The National Healthcare Decisions Day in the USA
Authors: Long K
Published: May 2012

National Healthcare Decisions Day (NHDD) will celebrate its fifth year on April 16, 2012. Designed to raise awareness about the importance of advance directives and advance care planning, NHDD has grown into a successful, growing national movement reaching several million Americans as of 2011. NHDD maintains an organizational structure that includes representation at the state, local and organizational level. The goal of NHDD is to motivate the public, individual providers, and institutions to take action to improve understanding of advance directives and participation in the advance care planning process. NHDD has developed extensive resources, including social media activities, and an annual evaluation process. Through its highly collaborative structure, it serves as a model for national outreach on a difficult topic.
Advanced care planning metrics for stage IV cancers and strategies for improved utilisation in oncology-settings
Authors: Mikan S , Patt D , Hoverman R
Published: May 2012

To define Advanced Care Planning (ACP) Metrics within an oncology-specific electronic health record (EHR) in order to develop strategies to increase awareness and utilisation of Advanced Directives documentation. Descriptive statistics will be used to identify and measure utilisation of ACP documentation, Hospice enrolment and chemotherapy administration within last 14 and 30 days before death within an urban oncology practice. Patients with stage IV colon, lung, breast, and pancreatic cancers will be the population of interest. Additional variables of focus include ACP office visits, website hits, and dissemination of ACP documentation will be measured to assess strategies. Results will be reported as a percentage of utilisation capture of the selected variables within stage IV colon, lung, breast and pancreatic cancers within the practice. Increased awareness of ACP documentation in the EHR for patients with terminal cancers is essential. Documentation allows the patient to direct their care and outcomes to medical staff. Development of strategies for increased awareness and compliance with ACP could improve care delivery to patients with terminal cancer. By incorporating these strategies with definable metrics, strategic intervention can be measured and reported. Further study of the relationships between ACP documentation and patient outcomes is necessary for comprehensive oncology care.
Ten year outcomes after a state commission on end of life care
Authors: Ratner E
Published: May 2012

In 2002, the Minnesota Commission on End of Life Care (funded by the Robert Wood Johnson Foundation) completed a 2 year process of collaboration among health care organisations and providers, patient advocates, and experts in law and bioethics. Recommendations were made regarding 1) principles of care, 2) access to care, 3) education and 4) public policy, all addressing advance care planning. This presentation will describe progress over the subsequent decade. The first of five principles was “Preferences for treatment and care will be discussed and respected”. In response, a Minnesota medical society has implemented a large scale, metropolitan-wide replication of the LaCrosse, Wisconsin Honouring Choices model. In addition, a broadly representative inter-professional group developed and widely disseminated a standardised POLST tool. Hospice use has grown from 18% to approximately 50% of those dying in the state. From no programs in the 1990s, nearly 89 percent of the state's medium and larger hospitals now offer palliative care while several rural palliative care initiatives are underway. Curriculum regarding end of life care, including advance care planning training, now exists in health professional schools. Minnesota-based health insurers began offering a palliative care benefit, even more extensive than in Medicare. The impact of these changes is seen by a significant shift in the location of death, from nursing homes to home settings. The percentage of deaths at home increased from 20% to 30%. Over the past 10 years, virtually all of the recommendations of the Commission have become reality.
Improving advance care planning in a racially and ethnically diverse community
Authors: Pecanac K. , Repenshek M.
Published: May 2012

Respecting Choices, a program developed to improve advance directive (AD) prevalence and utilisation, has been very successful in the La Crosse County, Wisconsin community. However, La Crosse County is a racially and ethnically homogenous community, and little is known about whether Respecting Choices is equally effective in racially and ethnically diverse communities. The purpose of this study was to see if implementing the Respecting Choices program in a racially and ethnically diverse community in the United States would produce the same success of increased prevalence of advance directives as well as high consistency between wishes specified in the advance directive and treatment decisions at the end of life. AD information and course of hospitalisation were compared for decedents (2005-2010) before and after Respecting Choices was implemented. Our results (n=732) showed that Respecting Choices did have a statistically significant effect on increasing AD prevalence (p=.015). The increase in AD prevalence for Whites as a result of Respecting Choices was marginal (46.7% to 47.9%), yet the increase for racial and ethnic minorities was substantial (27% to 39.2%); (p=.100). The consistency of wishes expressed in the AD and the medical orders written to restrict life-sustaining treatment were relatively high for all treatment decisions (73.9%-96% consistent), regardless of race. Beyond prevalence and consistency, our study also looked at the utilisation of ADs, by assessing the number of days prior to death medical orders were written to restrict life-sustaining treatments, as a result of Respecting Choices and ADs, stratified by race.
California POLST education program
Authors: Hatchett J , Evans C
Published: May 2012

The California POLST (Physician Orders for Life-Sustaining Treatment) Education Program includes 7 integrated teaching modules designed to educate healthcare providers about POLST and the POLST Conversation. This comprehensive curriculum is designed to include an introduction to the Advance Health Care Directive and POLST as well as role plays, case studies, and other interactive tools to teach the POLST Conversation. The program was developed to support consistent, comprehensive discussions with patients and families. Since providing basic comfort measures is a foundation of POLST, we include a module “Honouring Wishes for Comfort”. The curriculum provides flexibility to teach programs ranging from 15 minutes to 8 hours or longer, taught in a variety of settings to audiences including both healthcare providers and community members. Group discussion and interactive exercises are highlights of the program. The program incorporates 4 C’s: The POLSTConversation, aConsistent form,Comprehensive education andCommunity collaboration. Since May 2009, over 500 healthcare providers have attended the 2-day POLST Train the Trainer Program learning how to effectively teach the 7 modules. The California POLST Education Program has expanded POLST education throughout the state promoting both group and individual learning and the ability to teach others. This dynamic material improves conversational skills for providers caring for seriously ill adult and paediatric patients and families, and facilitates informed, collaborative decision making. In addition, it is expanding POLST usage through building community coalitions and integrating POLST into community standards of care.
Whose life is it anyway? – informed choices for young people and their families
Authors: Saul P
Published: May 2012

Dennis Lindberg was 14 years old when he died. A Seattle court had upheld his refusal of a blood transfusion because he was “mature, and understands the consequences of his decision”. But when Abraham Cherrix, aged 16, refused chemotherapy a Virginia court overruled him. Billy Best, also 16, solved the problem by going into hiding, and subsequently became a minor celebrity. At the same time, the parents of Kara Neumann were imprisoned for failing to provide conventional treatment for her Type 1 diabetes. Neil Beagley's parents met the same fate when they decided to treat his urinary obstruction with prayer. Although these cases have religious conviction as a motive, the real issue is of autonomy. In the case of an adolescent, who has the right to refuse treatment? The idea that children have a right to decide is recent, and is enshrined in Articles 12-17 of the UN Convention on the Rights of the Child. The United States is uniquely not a signatory to this, but even in countries like Australia the provisions are seen as controversial and have not been signed into state laws. The right of parents to refuse conventional medical treatment for their children is also contested. It is clear now that a child's autonomy is not simply transferred to its parents, but some conservatives believe that this should be the case. This paper explains modern accounts of autonomy in children, including that of Joel Feinberg that may help understand and avert the conflicts that arise when life-prolonging treatments are refused.
Measuring success in advance care planning. What outcomes are measurable, and what is important?
Authors: Detering K
Published: May 2012

When considering the potential benefits of advance care planning (ACP) there are a number of factors that might be considered to be important. These may include preparation for possible future incapacity, preparation for end-o- life and death, and relieving burdens placed on families who may be required to make future medical treatment decisions. Importantly ACP assists patients to communicate their future wishes to their family, and health care providers so that future medical care is consistent with their wishes.

Generally speaking ACP will commence with an individual reflecting on his or her values, beliefs, understanding his or her current and future treatment options determining their goals of care and discussing these with others, such as family and doctors. Often during the ACP process a person elects to appoint a substitute decision maker, and they may also decide to formally document their future treatment wishes. Ultimately for most people improving end-of-life care is a major goal and focus of ACP, and ensuring that the care received is consistent with previously expressed wishes is vital.

During this presentation I will review some measures which have been utilised to gauge the outcome of ACP at the various steps throughout the process as described above. I will also discuss other factors such as the quality of death and the impact the death on surviving relatives as other potentially important and measurable outcomes of ACP.
The need for activism, building a coalition for change, and public engagement
Authors: Koutsoumpas T
Published: May 2012

C-TAC is a large, active coalition of patient and consumer groups, care providers, private sector stakeholders, faith-based organizations, health care payers and others. Our vision is that all Americans with advanced illness, especially the sickest and most vulnerable, will receive comprehensive, high-quality care that is consistent with their goals and values and honors their dignity.

The C-TAC mission is to transform advanced illness care by empowering consumers, changing the health care delivery system, improving public and private policies, and enhancing provider capacity. We are assembling a diverse group of stakeholders to work together to:

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Identify, design and promote best-practice delivery models that ensure high-quality, coordinated care across all settings.

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Develop and disseminate innovative models of inter-professional advanced care education aimed at improving quality, shared decision making, and clinical care by cultivating respect, compassion and responsiveness in care delivery.

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Develop and advocate for federal and state legislative, regulatory, judicial and administrative initiatives, as well as private policies, to improve care for those with advanced illness.

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Undertake a nationwide campaign of public education and engagement to help patients and their families make more informed decisions and to call for delivery system and policy change.

As Baby Boomers age, the number of people struggling with serious advanced illness will expand rapidly; we need action. Now is the time for stakeholders to take the initiative to develop and implement sustainable models of care delivery for the sickest and most vulnerable among us.
Evaluation of novel multimedia education to train doctors to discuss advance care planning (ACP)
Authors: Detering K , Renton J , Corke C , Milne S , Silvester W
Published: May 2012

Despite evidence of significant benefits of ACP for patients and relatives, many doctors lack the confidence to have ACP discussions with patients. To improve the ability of doctors to undertake these conversations, the “Next Steps” program – funded by the Victorian Quality Council - was developed, comprising an E-simulation, DVD, interactive workshop and reading materials. Initial evaluation entailed participants completing surveys pre and post training. Data includes demographics, 8 questions on ACP knowledge, 10 questions on attitudes to ACP, 8 questions regarding confidence to discuss ACP and an E-simulation score (maximum score 80). Participants also rated all educational tools. 148 doctors attended the workshop (51% Male, 72% <41 years old, 62% trained overseas), attended the workshop, 46% completed both pre and post questionnaires, and 45% did the e-simulation. Knowledge levels were high pre training and improved significantly (mean pre 5.9/8, post 6.7 p <0.05). There was an overall trend to a change in attitude, but only 2 questions had a statistically significant change. There was a statistically significant improvement in the level of confidence on 6 questions. The E-simulation score increased significantly (pre 18, post 53.5, p < 0.005). Most participants rated the materials highly, rated the interactive workshop the highest, and preferred the use of a combination of materials. “Next Steps” was well received and improved knowledge, attitudes, and confidence to discuss ACP amongst a small group of doctors. This training will facilitate doctors developing the skills and confidence to provide ACP.
Medical students' experiences using an online decision aid to engage in advance care planning
Authors: Green MJ , Wilkes M , Robinson M , Dermart C , Levi BH
Published: May 2012

Most physicians report that their medical training inadequately prepared them to help patients engage in advance care planning (ACP). This study examined the experience of medical students who used an online decision aid as a tool for assisting individuals through the process of ACP and creating a personalised advance directive. As part of a required unit on “doctoring,” third-year medical students at a single institution helped another adult complete an advance directive using an online decision aid for ACP. They then wrote an essay describing their experience with this exercise. Investigators coded 64 student essays and identified four common themes: 1) Challenges for students completing this exercise; 2) Challenges for the individuals engaging in ACP; 3) Recommendations for implementing ACP in practice; and 4) Feedback on the decision aid. Most students reported the exercise to be valuable, and many reported having learned a great deal about not only the complexity of ACP, but also the challenges of accurately predicting as well as documenting and interpreting another person's values and wishes. Students provided several recommendations for improving the online decision aid, but were generally very pleased with its ease of use, helpfulness in explaining complex ACP issues, and accuracy in helping articulate and document an individual's wishes for future medical care. This study suggests that an online decision aid can help prepare physicians in training to engage in ACP with patients.
End-of-life preferences of patients enrolled in a palliative homecare programme for end-organ failure patients in Singapore
Authors: Tan HN , Wong LHL
Published: May 2012

A total of 132 patients, enrolled in a palliative homecare programme between May 2008 and Nov 2011, completed advance care planning. ESHF patients (97.4%) were most likely to choose own home as the preferred place of care should their condition deteriorate, compared to COPD (88.2%) and ESRF (86.7%). Most ESHF patients (92.1%) preferred to die at home; none chose to die in a hospital, while 7.9% indicated no preference. 11.7% of ESRF patients chose to die in an institution. COPD patients had the highest proportion indicating no preference (17.6%). About 83% of all patients preferred not to be resuscitated when no breathing or pulse could be detected. 10% of ESRF patients would like CPR performed on them, compared to 2.9% of COPD patients, and 7.9% of ESHF patients. The decision for artificially administered nutrition at the end of life was the most difficult one to make. Though more than half indicated they did not want tube-feeding, a significant proportion preferred to leave the decision to their doctor or family member (17.7% for COPD; 21.1% for ESHF; 26.7% for ESRF). 82.4% of COPD patients opposed aggressive and invasive treatment to prolong life. None of the ESHF and ESRF patients chose aggressive treatment but close to a quarter preferred it to be a medical or a family decision. This study is one of the first in Singapore to examine the differences in end-of-life preferences in end-organ failure patients. Future studies could explore racial differences to develop culturally sensitive advance care planning discussions.
Promoting advanced care planning in the community
Authors: Davis A
Published: May 2012

This abstract will introduce an innovative way of involving the community in discussion on end of life planning. The LMNC is a rural area consisting of beachside areas, with a mixture of young families and retired people, as well as farming properties and town centres. The local population consists of a diverse mixture of individuals from a variety of backgrounds. The LMNC palliative care team hold an annual World Café with the aim being to have conversation around death and dying issues.

What is a world cafe?

It is the process of harnessing the power of conversation for social value. The conversations link and build on each other. World Café guidelines include listening and understanding concepts which will help gain insight and develop deeper connections to complex issues that guide today's society. The World Café combine conversations from the mind and heart, involves having fun and allowing time to reflect on important issues.

The question posed in 2011 was;

What are the barriers to end of life planning?

The aim is to develop strategies to encourage the wider community to plan for end of life as well as promote community awareness towards the normalcy of death. Lots of wonderful ideas were suggested, with some being put into practice to promote end of life planning throughout the LMNC. This presentation will explore the many ways that end of life planning can be promoted in communities. The results highlighting the importance of good communication, respecting the uniqueness of each individual and strategies to empower each individual to make appropriate decisions.
Using tele-health and web technologies to provide ACP education for informal caregivers
Authors: Grant S
Published: May 2012

Attendees will learn about a pilot project that engaged caregivers using tele-learning and web-technology to provide education on Advance Care Planning (ACP). The advantages of using the Care-Ring Voice Network include the national scope and reach to explicit caregiver communities, and convenience for participants who can access professional and multi-disciplinary experts on ACP from the comfort of their own home. In association with Solutions-East Toronto's Health Collaborative (Solutions), VHA Home HealthCare (VHA) led in the development, implementation and evaluation of a new and innovative tele-learning program for caregivers, in particular those falling in the ‘sandwich generation’ category. As a member of Solutions, a local collaborative involving a full continuum of health care organisations, VHA championed joining Care-Ring Voice and testing their technology to increase knowledge and reduce stress of caregivers. Care-Ring Voice connects caregivers and families to information and support through the use of tele-learning. The network hosts learning sessions by telephone and the web on a range of topics relevant to informal caregivers. Participants benefit by learning from healthcare professionals leading the workshops and by sharing with others in similar situations. Care-Ring Voice is a national network but currently membership is largest in Quebec and British Columbia. The consultative approach used to develop the five-week ‘Ring and Reach’ series curriculum, involving professionals from across the healthcare continuum, will be highlighted as well as the evaluation methods and findings. The presentation will highlight predictors of program success, challenges and barriers to caregiver participation, and strategies for future offerings.
A framework for finding common ground with substitute decision-makers to achieve a patient's good death
Authors: Tan A , Manca D
Published: May 2012

Conflict with substitute decision-makers of dying patients is not uncommon in end-of-life care. Understanding how to best manage these conflicts may improve relationships between physicians and substitute decision-makers, reduce stress, and ultimately improve the care of dying patients. To gain insight, we explored the experiences of Canadian Family Physicians who encountered conflict with a substitute decision-maker of a dying patient. We employed a Grounded Theory methodology with in-depth, semi-structured, audiotaped interviews about recent experiences of conflict. Purposeful sampling sought a maximum sample variation for physician participants. The verbatim transcripts, field notes and project memos were analysed using an iterative process involving the constant-comparative method to identify emerging key themes and concepts. Our study found that the physicians' main concern was for the patient to have a death free from avoidable distress, and in accord with the patient's wishes. A framework for achieving a “good death” through Finding Common Ground is described. This process involves: 1) building trust through clarifying roles, bringing key players together and delivering small bits of information at a time; 2) understanding through active listening, and finally; 3) informed shared decision-making. Preliminary findings also describe barriers to achieving Common Ground and what to do when an impasse occurs. This presentation will describe a framework for developing Common Ground between Family Physicians and substitute decision-makers to assist in achieving a “good death”. Discussion of these primary results may help physicians, allied healthcare professionals, learners, and the public, improve end-of-life decision-making.
Courageous Conversations: Advance Care Planning with Teens with Serious Medical Conditions and their Families
Authors: Lyons M , Briggs L
Published: May 2012

Advance care planning (ACP) is not a “one size fits all” conversation. The Respecting Choices Disease Specific ACP (DSACP) intervention is an in-depth planning process for patients with serious medical conditions and their families. Delivered by trained facilitators in the outpatient setting, patients are assisted to clarify their goals for care in “bad” outcomes situations. In adult populations, this intervention increases understanding of treatment decisions between patients and their chosen surrogates and is a highly satisfying discussion. The DSACP intervention has been applied to HIV+ adolescents through the FAmily-CEntered (FACE) Advance Care Planning (ACP) intervention. In a randomized controlled clinical trial FACE dyads received: (1) Lyon Advance Care Planning Survey©; (2) Respecting Choices DSACP interview®; (3) Five Wishes©. FACE adolescents felt significantly better informed about end-of-life decisions than controls; had a higher congruence on every situation; rated the overall quality of discussion as very good to excellent; were more likely to rate sessions positively, and complete advance directives. There was no increase in anxiety scores post intervention.

This application is continuing through an ongoing RCT with HIV+ adolescents as well as teens with cancer.

Evidence supports the application of a facilitated ACP process for adolescents with HIV/AIDS and cancer and their families.
Honouring choices Minnesota: scaling advance care planning to a diverse metropolitan population
Authors: Wilson K , Greene B , Hanley B
Published: May 2012

Methods and benefits of ACP for geographic populations in the U. S. have been limited to relatively small populations such as La Crosse, WI (POP. 110,000). Beginning in 2008, the Twin Cities Medical Society and its Foundations catalysed the development of a metropolitan area wide voluntary, collaborative ACP program that included major hospital systems and health care plans. This initiative, called Honouring Choices Minnesota (HCM), features Minnesota governance and implementation of a validated ACP model. More than 800 facilitators and 32 instructors have been trained and the most mature health system program is adding 2,000 health care directives to its EMR monthly. This two-part workshop will present ACP strategies and methods across systems and population subgroups. In Part I, project conceptualisation, environmental assessment, collaborative development, leadership and funding will be addressed. Other components will include establishing a medical infrastructure, staff training, pilot site development, standardised patient education, moving from pilot site to system-wide implementation, access and reimbursement. Part II discussion will focus on public engagement. Development of public engagement goals, objectives and strategies will be reviewed. The conceptualisation, development and deployment of a metro-wide broadcast and internet campaign will be presented as well as ideas for national application. The roles of strategic partnerships, community resources, media partnerships and multicultural strategies will be reviewed. HCM is an innovative ACP program, scaled to a large, diverse metro population (POP. 2.85 million), whose concepts and strategies may have broad applicability nationally and internationally.
The need for safeguards in advance care planning
Authors: Billings J
Published: May 2012

The recent uproar about Medicare “death panels” draws attention to public and professional concerns that advance care planning might restrict access to desired life-sustaining care. The primary goal of advance care planning is to promote the autonomy of a decisionally-incapacitated patient when choices about life-sustaining treatments are encountered. Unfortunately, patients often do not understand their decisions or may change their mind without changing their advance care directives. Likewise, concordance between patients' wishes and the understanding of the physicians and surrogate decision makers who need to represent these wishes is disappointingly poor. A few recent reports show encouraging outcomes from advance care planning, but the bulk of studies indicate that the procedure is ineffective in protecting patients from unwanted treatments and may undermine autonomy by leading to choices that do not reflect patient wishes. Safeguards for advance care planning should be put in place, such as requiring clinicians familiar with the patient's prognosis and treatment options to participate in the formulation of directives, assuring regular review of decisions, allowing physicians to err on the side of preserving life when uncertain about the application of an advance care directive, specifying the role of the health care proxy in interpreting or even overriding directives, requiring specialised counselling for non-emergent choices to limit life-sustaining treatment, training and certification of clinicians for conducting such conversations, and use of structured formats, clinical guidelines, and system support aides that promote quality and safety. Finally, associated research needs are outlined.
Transcending health literacy: using videos to aid advance care planning and healthcare decision-making
Authors: Vig C , Berg B , Simon J
Published: May 2012

A critical aspect of advance care planning is patient understanding of how goals of care and related medical interventions reflect their values and wishes for current and future healthcare decisions. Research regarding the use of patient education videos portraying resuscitative, medical and comfort care is demonstrating increases in patient understandings of healthcare interventions and the determination of medically appropriate goals of care. The use of goals of care videos assists with transcending health literacy for patients and families involved in healthcare decision making, and highlights the process of engaging in meaningful conversations between families and healthcare providers. This workshop will present a patient education video series that is based on current research development and findings that use videos to improve patient understanding about goals of care. The videos have been created to align with the “Advance Care Planning: Goals of Care Designation (ACP/GCD) (Adult)” policy that was systematically implemented within Alberta Health Services, Calgary Zone in 2008. The series is intended to provide relevant information related to healthcare considerations and blends the questions of ‘why engage in ACP?’ with ‘what are the healthcare interventions to consider?’ The two-part video series includes: Understanding Goals of Care and Engaging in Advance Care Planning, These videos will be presented as tools to help bridge the gap between patient values and wishes and beneficial medical interventions, as they relate to the Goals of Care framework adopted by Calgary Zone.
Letter on future care; an individualised disease-specific future care plan for people with ALS
Authors: Herz H , Yang L , d'Abrew N , White K , Kiernan M , Butow P
Published: May 2012

An individualised disease-specific letter expressing patient's wishes for their future care was offered to people with Amyotrophic Lateral Sclerosis (ALS) from 2001 to 2008. All patients attended a multidisciplinary ALS service where they were seen by a palliative physician. Each letter was developed in a process of drafting and revision over several consultations. The letter conformed with government and Catholic health guidelines on advance care planning. It rapidly developed into a tool to facilitate discussion and became known as the Letter on Future Care (LFC). Although individualised care planning is now the standard, an LFC is not known to be in use elsewhere. A series of studies was undertaken to evaluate the LFC, focussing initially on the carer's experience. Past carers were identified: 10 past carers where an LFC was written and 9 past carers where there was no LFC. Semi-structured interviews were held with each carer. Each was shown a sample LFC for consideration or as a memory prompt. Interviews were audiotaped, transcribed and analysed. Themes were extracted and characteristic quotes identified. A questionnaire was developed to elicit a critique of the LFC from a purposive sample of ALS health professionals including neurologists, palliative physicians and nurse specialists. Data were analysed. An expert panel was convened to develop Guidelines. In this presentation, we will examine the views of the carers, and the critique given by health professionals. We will examine the structure of sample LFCs. We will propose the Guidelines for comment and discuss prospective testing of this approach.
Patient-centred ACP and cancer in Spain: insights on cultural barriers and clues to move forward
Authors: Júdez-Gutiérrez J , Pereira-Rico A
Published: May 2012

Patient-Centered Advance Care Planning (PC-ACP) is a desirable goal as part of all care. Customising it to major illness trajectories is a wise organisational move based in common sense and best practices widely recognised. But could it be as widely implemented? For Spanish Mediterranean culture with a public healthcare system we seem to walk in circles regarding the improvement of end-of-life care and having PC-ACP contributing in doing so. “Cancer-tag” adds, to the inner difficulty of facing potential life threatening illness, the cultural bias of “double deceit trap”: both patient and carer worrying/being scared and not sharing. What happens when not facing this double trap (‘non-telling-the-truth’ environment) works as default or step back standard hindering an open talk (ACP) about what the patient is experiencing, wants or needs? How could we improve current practice of clinicians where emotions are not addressed and skills are not taught in a significant behaviourly change manner? How can we introduce a ‘game-changing’ process towards implementing PC-ACP in cancer care in Spain and similar cultural systems? “KAYRÓS-Conversations that matter”, a Spanish ACP research program inspired in Respecting Choices®' model, is working with chronic and neurodegenerative illness trajectories but needs to solve how to move beyond the “cancer” hurdle. This presentation will share qualitative study findings with in-depth interviews with oncologist, clinical psychologist, palliative care professionals and bioethicist that will give some insight and clues about what measures and training initiatives might help address the barriers and progress in implementing PC-ACP in cancer in Spain.
Advance care planning: the journey of changing hospital culture in an in-centre dialysis unit
Authors: Grose J , Makiri G
Published: May 2012

The mortality rate for patients with end stage renal disease is comparable to or higher than many cancer diagnoses. While dialysis provides life-sustaining treatment, kidney failure is irreversible and is often accompanied by many complications such as diabetes, cardiovascular disease and peripheral neuropathy, among others. Essentially, the treatment of kidney failure by renal replacement therapy is a long-term palliative therapy. In light of this reality, the Providence Health Care Renal program launched the Renal End of Life Initiative (RELI) in 2007 to ensure a continuum of quality kidney care from diagnosis through the terminal phase of life, including bereavement care for the patient's survivors. The RELI focuses on the individual needs of the patient and family in four main components: pain & symptom management, Advance Care Planning (ACP), palliative care training for inpatient nurses, and bereavement support. The goal of the RELI was to demonstrate that with a small amount of seed funding and the aligned commitment of physicians, staff and administrative leadership, a compassionate and integrated program of palliative and bereavement care for patients and families living with chronic disease is achievable. Focusing on ACP, specific communication tools were developed to track the progress of ACP conversations with patients and were integrated into patients' medical charts. Within less than a year almost 50% of patient records had ACP conversations documented. Viewers of this presentation will learn how a systematic approach to ACP can be used innovatively to enhance care for patients living with a chronic progressive illness.
National primary care audit in end of life care and ACP and recommendations for improvement
Authors: Thomas K , Corner H , Stobbart-Rowlands M
Published: May 2012

This audit provided the largest national assessment of primary care end-of-life care provision, with areas for improvement. It assessed the provision of EOLC and use of ACP based on use of Palliative Care/GSF Registers in primary care. 502 GP practices in 15 PCTs (60% uptake) submitted data from 4,500 patients for every death over a 2 month period. The GSF After Death Analysis (ADA) Audit Tool providing outcome data for individual patients, and compared with recommended best practice standards. More patients on the register were offered ACP discussions that those not on the register, although there was some confusion of terminology between ACP and usual care planning. Only 27% of patients who died were included on the palliative care register, of these 23% were non-cancer. Those on the register were more likely to receive well-coordinated care and offered ACP discussions. This snapshot provides an objective overview of current community end-of-life care, demonstrating key areas for further improvement. Patients on the register received, better coordinated care than those not on the register, and were more likely to have ACP discussions recorded. Only 25% patient deaths were on the register, suggesting a need for earlier recognition and better coordination. . Suggestions for improvement included better means of identifying patients for the register, particularly non-cancer patients, use of Next Stage GSF Training, a ‘Find your 1% campaign’, use of electronic triggers, local strategic ACP plans and communication skills training.
The primary care palliative care programme in Auckland, New Zealand: an update
Authors: Rishworth S , Winstanley D
Published: May 2012

The PCPCP has been implemented amongst GP teams in Procare, a Primary Health Organisation (PHO) in Auckland, New Zealand. Implementation began two years ago and in that time 412 patients have been enrolled in the programme with 288 general practitioners (GPs) and practices nurses having attended the compulsory two hour introduction to the programme. The programme has been evaluated in a formal study which included face to face interviews and a questionnaire. The results have been valuable in ascertaining what has been helpful and what needs modification. The most appreciated aspects include the subsidy available for the one hour consultation and subsequent patient contacts, the advance care planning and assessment templates and the education resources made available. It became clear that the use of other components was limited by misunderstandings of their purpose. These components included a patient register for the practice, an after death analysis form and a prognostic indicator guide. On line education resources had variable uptake. Easy access to a Palliative Medicine Consultant for discussion of individual patients and a palliative care handbook provided to each participating GP/practice nurse were valued. The evaluations demonstrated that the PCPCP initiative was appreciated and supported by GP teams who liked the collaborative approach and the affirmation of the role of GP teams as the coordinators and providers of palliative care in the community. It has given information on areas to modify and education areas to target in 2012.
South Australian baby boomer advance care directive decision-making: CGT study of factors influencing ACD completion
Authors: Bradley S
Published: May 2012

The originality of this research resides in investigation of a specific demographic group who are younger, healthier and not the target of advance care planning programs. Significance and timeliness of this research coincides with the release of a National Advance Care Directive Framework in Australia to assist with facilitation of completion and implementation of these instruments on a national and state level. Factors that influenced participants in this research to contemplate completion of (ACDs) were investigated in the context of South Australian ACDs and the SA healthcare environment. Research was conducted using classical grounded theory. Participants contemplated ACDs in three non-linear stages. These stages were: contemplation of knowledge; contemplation of relationships; and contemplation of actions/inactions of ACD decision-making that should result. Factors influencing these stages unique to these Boomer participants were their awareness of quality of life with dementia; guidance and protection of children acting as substitute decision-makers (SDM); and the difficulty in choosing a SDM. Many of these factors were gained through experiences with others. Of the seven participants in this study, only half had completed ACDs for themselves. Factors which inhibited completion included time, accessibility and lack of a professional for discussion of ACDs.
African American seniors' perspectives on advance care planning
Authors: Crump S
Published: May 2012

African-Americans are less likely to write advance directives than white Americans. Little is known about African-Americans' perceptions of planning for who would speak for them if they were unable to speak for themselves. Health professionals' lack of knowledge about culture, ethnicity and/or religion is an obstacle to effective end-of-life care. African-American seniors' perspectives are explored and recommendations are made to healthcare providers, the African-American community, and the healthcare system in general. A community-based participatory research (with focus groups) approach was used to produce knowledge with participants. A community advisory board was active in all aspects of the research. A virtue ethics framework was used to maintain the integrity of the research. The history and ethics of conducting research was reviewed. Forty-five female and 7 male African-American seniors (aged 59-92) participated in the nine, one time, focus groups. The research data revealed thirty themes which were divided into five primary categories: trust, fear, relationships, lack of information/knowledge, and procrastination; and six secondary categories: deracination (cultural uprooting), deterioration of family/community, past discrimination, experience, self-fulfilling prophecy, and religion. Study participants connected deterioration of the African-American community and family to ongoing discrimination and racism and cited this as contributing to the reluctance to write advance directives. Another major finding is that choosing a proxy decision-maker requires “analysing personal relationships” and this can be painful and cause avoidance of addressing advance care planning. The researcher had not previously identified this perception in the literature.
A descriptive case study of grieving beliefs in a hospital setting: implications for advance care planning and end of life
Authors: Sexton C
Published: May 2012

A major activity and concern in end of life care is bereavement risk assessment of the patient's carer and family members. The assessments and conceptualisations of the grieving process are based on studies of adults in clinical settings after death of the loved one. This study collected data about grieving from an adult lay population (N=312) in a hospital setting. There were statistically significant differences between male and female views of grieving. Male responses to 3 items demonstrate sensitivity to emotional and relational aspects of adapting to loss. This study builds on prior research of gender differences by providing data about those differences. The findings point to a critical need for helping and health care professionals to educate carers and families about the distinction between grieving and depression. Early, timely interventions such as this are part of the preparatory processes that lead to positive bereavement outcomes. This study is the first empirical research of adults' view of grieving in a hospital setting in the U.S.
European model of palliative care for dementia: Study protocol
Authors: Davies N. , Iliffe S. , Maio L. , Manthorpe J. , Ahmedzai S.
Published: May 2012

Introduction

Despite increasing attention in the past decade there is still little published work on palliative care (PC) and dementia. There is consensus that there is a need to improve the organisation and structure of PC services for dementia, however little is published on the problems and issues.

Aims and Methods

To develop a model of PC for dementia suitable for European health care systems. We will present the process of developing the model and identifying quality indicators for palliative care in dementia. A mixed methodology is being used starting with document analysis to identify information on healthcare systems and PC. Semi-structured interviews using closed and open questions, aided by the use of vignettes, will be conducted with policy makers and professionals from micro (practitioner), meso (management & support services) and macro (policy) levels of the NHS and social care. This will include professionals from four settings (primary care, care homes, hospitals and hospices). Systematic reviews have been undertaken for reviews of policy for PC for dementia, education in PC for dementia, and carers' perspectives on PC for dementia. A consensus conference in February 2012 will synthesise the evidence to produce the model.

Results

Results of the interviews from five European centres; England, Germany, Italy, the Netherlands and Norway will be presented together with results from document analysis.

Conclusion

A mixed methodology approach is workable across Europe and yields a complex model of PC in which a range of quality indicators can be applied.
“Mind the Gap”: Patient Knowledge and Understanding of Their Condition, Treatments and Prognosis Remains an Issue For Those With End Stage Heart Failure (ESHF)
Authors: Browne S. , May C. , Macleod U. , Mair F.
Published: May 2012

Introduction

It has been suggested that end of life care is rarely discussed with ESHF patients and that many do not appreciate the seriousness of their condition. Consequently, a range of guidelines have been published that aim to improve communication and practice in this sphere.

Aims and Methods

To examine how ESHF patients and carers make sense of their condition and plan for the future, and explore what part health professionals play? Semi-structured interviews with ESHF patients (29) and their carers (19). Interviews explored participants' knowledge and understanding of the condition including prognosis. Qualitative data analysed using thematic analysis but informed by normalisation process theory (NPT). Inclusion criteria: Grade 3 or 4 NYHA classification heart failure; who have ongoing symptoms despite optimal therapy; and have a history of admissions for this condition.

Results

The gap between recommended “best practice” and patient experience remains wide. While some participants clearly know their condition is “severe” or “serious” there remains a much uncertainty around prognosis. Levels of knowledge, understanding and communication remain suboptimal. Advances in treatments and technologies mean pose new challenges for this patient population. For example, problems relating to understanding and communication surrounding the role of Implantable defibrillators (ICDs) is an emerging issue.

Conclusion

Knowledge and understanding of diagnosis and prognosis remains problematic. Issues relating to ICDs, particularly deactivation, seem to be an emerging problem. More counselling/support services are needed to help support ESHF patients who have a range of unmet needs and help bridge the gap between published guidelines and patients' real experiences.