bluuebunny/crossref_metadata_2025 huggingface dataset:
Public Policy: Where we've been…Where we need to go
Authors: Lynn J
Published: May 2012

Advance care planning in its modern guise started nearly a half-century ago in the US with Living Wills, graduated to include durable powers of attorney, and various special formats including POLST. These have been influential in shaping public opinion, but they still are not widely used and have only modest effects upon the course of care. This panel presentation will outline some current policy options and consider their merits: required planning for providers, paying for advance care planning, putting care planning or advance care planning into meaningful use incentives, measuring advance care planning quality and reporting publicly, and nesting advance care planning into targeted requirements for care planning generally. The presentation will close with a justification of prioritizing the goal of accomplishing at least the requirement of care planning for a population of persons known to be facing serious or complex illness.
Advance care planning discussions among residents of LTC and DAL in Alberta
Authors: Dyason C. , Wityk Martin TL. , Simon J.
Published: May 2012

Patients, physicians and the health care system are faced with the challenge of determining, and respecting, the medical wishes of an aging population. Patient autonomy and informed decision-making can only be maximised when the decision-making process is better understood. In 2008, Alberta Health Services initiated its “Advance Care Planning: Goals of Care Designation” (ACP:GCD) policy in the Calgary Zone. This policy encouraged discussions about goals of care (GOC) and used a tracking form to capture these conversations. Chart audits were performed at 3 time points: at baseline, at 6 months, and at 18 months post implementation. Recorded data included presence of an advance directive on the chart, indication of a personal representative/agent, and the number, participants and recorded key outcomes of documented ACP conversations.

This study will perform a retrospective review of the results of those audits in both Long Term Care (LTC) and Designated Assisted Living sites (DAL). Specifically, we will address what elements of ACP were discussed including: prognosis and anticipated outcomes of treatment, patient's values and understanding/expectation of treatment options, life sustaining measures/degree of benefit, comfort measures, resources available and GOC. 166 charts had documented ACP discussions, representing 81% of LTC charts reviewed and 87% of those in DAL.

The limitations of this study are those retrospective data and the reliance on accurate/thorough chart documentation. The study will identify current practice in the advance care planning process in LTC And DAL and potential gaps in that practice.
A clinical decision support tool to improve care planning in end-of-life cancer care
Authors: Elvidge K
Published: May 2012

In end-of-life cancer care, nurse clinicians strive to deliver an effective care plan to minimise pain, manage debilitating symptoms, and improve patients' quality of life as they approach end of life. Sadly, existing research literature is replete with studies contesting that sub-optimal pain and symptom management remains the reality for many end-of-life cancer patients, resulting in unnecessary suffering and a diminished quality of life.

To begin to overcome the chasm between inadequate pain and symptom management currently delivered in end-of-life care, and the excellent standard of care that could be achieved, nurse clinicians need only leverage knowledge from existing knowledge resources. Researchers assert that clinical decision making for care planning in end-of-life cancer care can be improved by ensuring access to contextually relevant, medical knowledge resources at the point-of-care. Collectively, these medical knowledge resources represent a valuable asset which can improve clinical decisions and the delivery of best clinical practice, while reducing medical uncertainty, unnecessary clinical variation, and medical errors.

In this research we present a clinical decision support system to bridge the knowledge gap that currently impedes the planning, and delivery, of effective pain and symptom management in end-of-life cancer care. This system enables nurse clinicians to: (a) make informed clinical decisions based upon the patient's presenting situation, care priorities, preferences, and standards of care; and (b) create personalised care plans for effective pain and symptom management in end-of-life cancer care.
The development and validation of a shorter version of the CANHELP Lite
Authors: Heyland D , D Pichora  , Jiang X , Day A , Cohen SR
Published: May 2012

Historically, improving EOL care has been hampered by a lack of validated tools to measure quality EOL care. Recently, we developed a novel measurement tool, theCANadianHealth careEvaLuationProject (CANHELP) questionnaire, which can be used to assess both patient and family satisfaction with EOL care. Whilst this instrument is reliable, valid, and comprehensively measures the patient (and families) experience with EOL, it takes 40-60 minutes to complete. The length of the interview may preclude its uptake; a shorter version would be more desirable. The purpose of this study is to develop and begin to validate a shorter version of the CANHELP questionnaire. Data were collected by a cross-sectional survey of patients (n=361) with advanced illnesses and their family members (n=255), who completed the long version of CANHELP, a global rating of satisfaction (GRS), FAMCARE (family members only), and a quality of life (QOL) questionnaire. We reduced the items on the long version of CANHELP based on derived importance of individual items and their relationship to global ratings of overall satisfaction, the frequency of missing data, the distribution of responses and focus groups with front line users. With the remaining items, we evaluated construct validity by describing the correlation of the new CANHELP Lite with full version of CANHELP, GRS, FAMCARE, and the QOL questionnaire scores and found it to be satisfactory. The CANHELP Lite questionnaire is a shorter version of the full CANHELP instrument and is a valid instrument to measure satisfaction with EOL care.
Practice and attitude toward advance care planning among Japanese palliative care physicians
Authors: Kizawa Yoshiyuki , Tsuneto Satoru , Abe Yasushi
Published: May 2012

The aim of this study is to examine physicians' attitude toward ACP in PCU in Japan.

We conducted a questionnaire survey to responsible physicians who worked in 203 certified PCU in December 2010. We asked them to complete a questionnaire regarding their attitude toward, and practice of ACP. We used 15 items questionnaire adopted from previous research (Davidson K, JAMA 1989) to investigate physician's attitude toward ACP. The questionnaire was confirmed its content validity by conveniently sampled 10 palliative care specialists.

Among 203 physicians contacted, 95 returned the questionnaire (response rate 47%). The percentage of physicians who practicing ACP discussion during admission in PCU regarding implementation of CPR, existing Advance Directives (ADs) and Power of Attorney of health care was 33%, 46% and 40 % respectively.

Responses to attitude statements were similar to US study in 1987 except for following three statements; “In a catastrophic situation, I would have greater confidence in my treatment decisions if guided by an AD”, “Widespread use of ADs could help contain medical expenditure” and “Widespread acceptance of ADs will lead to less aggressive treatment even of patients who do not have an AD” (34.4%, 31.4% and 28.6% of Japanese physicians answered agree or strongly agree V.S. 70.9%, 74.1% and 61.2% of US physicians).

This study will clarify physicians' practice and attitude toward ACP in PCU in Japan, and provide evidence of the unique cultural diversity toward end-of-life care and ACP among Japanese.
Advance directives: what's in a form?
Authors: Moskop J , J Foster Chaplain
Published: May 2012

A wide variety of model forms are available for living wills and health care powers of attorney, the major types of advance directives. In our state of North Carolina, for example, advance directives statutes include model forms for both types of advance directives, and many health care facilities rely on these statutory forms. Some facilities, however, make use of forms that they themselves have developed, and others have adopted widely distributed national advance directive forms like Five Wishes. Wake Forest Baptist Medical Center (WFBMC), a large academic medical center in Winston-Salem, North Carolina, has for years relied on the NC statutory advance directive forms, despite the fact that these forms are rather lengthy, complex, and therefore difficult to complete. As part of an initiative to enhance advance care planning services for both inpatients and outpatients, the presenters are engaged in an effort to evaluate different advance directive forms and choose or develop a new form for use in our institution and throughout the community. In this workshop, we will propose criteria for choosing advance directive forms, invite participants to evaluate and rank these criteria, apply these criteria to assess several different types of forms, and report on the status of our effort to choose and implement new advance directive forms in our institution and community.
Conversations that matter: using videos to model quality ACP conversations between clinicians and patients
Authors: Vig C , Berg B , Simon J
Published: May 2012

In 2008, the “Advance Care Planning: Goals of Care Designation (ACP/GCD) (Adult)” policy was systematically implemented across all sectors within Alberta Health Services, Calgary Zone. A critical component for successful implementation of the policy was clinician development of skills with engaging in quality advance care planning (ACP) conversations. Pre and post policy evaluation has consistently identified ongoing barriers with initiating and engaging in the quality conversations required for successful outcomes with policy adoption.

Key challenges reported by clinicians are lack of confidence and competency with approaching patients for the purpose of engaging in ACP conversations. Clinicians frequently identify similar themes found in ACP literature; fear of diminishing hope, lack of skills in initiating and sustaining conversations and fear of causing harm to patients in this process.

This presentation will present a series of clinician education videos modelling key components of ACP conversations. The videos provide clinicians with a ‘tool box’ of phrases and questions they might consider saying in different situations or at different stages of the process of conversations, and provide clear examples of communication techniques such as clarifying, maintaining eye contact and open body language.

These videos can be used as a basis for role modelling-based education for all clinicians to practice and improve communicating about advance care planning. Additionally, utilising videos as a teaching methodology can assist with timely and flexible education reducing some of the barriers with accessing skill development and training.
Documentation of do not attempt cardiopulmonary resuscitation (DNACPR) orders – do electronic DNACPR order (eDNACPR) forms make a clinical difference over standardised paper DNACPR order (sDNACPR) forms?
Authors: Kayode O , Pabla G , Downing C , Speakman J
Published: May 2012

DNACPR orders are important in sparing patients from inappropriate resuscitation attempts. Accurate documentation of a DNACPR order is required to ensure the decision is clear and understood by those involved. The clarity of documentation is central to NHS Trust guidelines, which suggest specific aspects of the decision need recording.

To determine whether the introduction of eDNACPR forms improve documentation when compared to the standard practice of sDNACPR forms.

A retrospective service evaluation of DNACPR documentation 2 months prior to and 2 months after the introduction of eDNACPR forms (July - November 2011). Subjects were in-patients on the 4 main geriatric/general medicine wards of Queen Elizabeth Hospital Birmingham, Foundation Trust. Documented aspects of the decision were examined and compliance with Trust guidelines assessed.

200 DNACPR orders were documented: 99 sDNACPR forms and 101 eDNACPR forms. Demographics (sex, ethnicity and mean age) were comparable between patients in each documentation method. 31% of sDNACPR forms and 3% of eDNACPR forms proved non-compliant with Trust guidelines.

Analysis of the sDNACPR forms revealed 12% of relatives and 15% of patients were not informed of the DNACPR decision.

eDNACPR forms showed 82% of relatives and 91% of patients were not informed.

eDNACPR forms improve the compliance of DNACPR order documentation with Trust guidelines. However, fewer DNACPR decisions are discussed with patients and relatives. eDNACPR forms do not process until all fields are completed. Therefore some reasons for sDNACPR form non-compliance, e.g. no review date stated, were removed through the design of eDNACPR forms.
Advance care planning needs, which is expected to end of life care teams in Japan
Authors: Yokoe Y , Nishikawa M , Miura H , Hong Y , Kubokawa N , Shibasaki M , Takamichi K , Kitamura S , Endo H , Nakashima K
Published: May 2012

In Japan, which has the highest rate of aging worldwide, the study of advance care planning (ACP) requirements, which are expected of end-of-life care teams (EOLCT) for non-cancer patients, has just begun.

The purpose of this study was to determine the ACP requirements of clinicians and patients, which were expected of EOLCT, for non-cancer patients in Japan.

In total, 240 clinicians in the National Center for Geriatrics and Gerontology in Japan were asked about they expected from EOLCT regarding ACP-related issues. Alternatives of “highly expected,” “somewhat expected,” “expected a little,” and “not expected” were scored as “4,” “3,” “2,” and “1” respectively. In addition, the nature of requests from 44 patients who had contacted EOLCT in the first three months of its operation was investigated.

The degree of expectation from EOLCT regarding ACP-related issues was 3.5 points. Of the 44 patient requests, 9 included decision support for cancer patients and 13 for non-cancer patients. Of the latter, there were 6 (46%) requests for ACP for gastric feeding tubes and artificial alimentation, 6 (46%) for mechanical ventilators, and 1 (8%) for artificial dialysis; 12 patients (92%) wished to make their own decisions after the intervention of EOLCT.

This result suggested that ACP provision for non-cancer patients by EOLCT is a strong expectation in Japan, particularly ACP for gastric feeding tubes and artificial alimentation for mechanical ventilators. This presentation will demonstrate to other Japanese health professionals the role that EOLCT should play in order to promote ACP for non-cancer patients.
Advance care planning measures towards enhancing good nutritional and health status of elderly people in Nigeria
Authors: Imonikebe B
Published: May 2012

The study investigated the measures that can be used to improve the nutritional and health status of old people in Nigeria. The sample comprised three hundred and eighty nine people, which included doctors, nurses, nutritionists, Home Economists, Students and elderly people. Questionnaire was used for data collection. The data was analysed by computing, the percentage and mean of the responses. Findings showed that some of the measures used by the old people in Nigeria in promoting and maintaining good nutritional and health status are as follows:- Old people should not eat too much of carbohydrate foods. They need to eat meals that contain leafy vegetables and also eating of fruits. They need to avoid eating between meals. Meals served must be varied and served promptly. Meals must be attractively served. Others are taking less strenuous regular exercise daily. Old people need to live with their children or relatives to avoid loneliness, avoidance of drinking of alcohol and smoking. They need regular medical checkup. It was recommended that people who have old people should provide comfortable accommodation for them and give them adequate care.
Physician orders for life-sustaining treatment (POLST): unresolved conceptual and ethical questions
Authors: Marckmann G , in der Schmitten J
Published: May 2012

Background

In the US, physician orders for life-sustaining treatment (POLSTs) are widely distributed. In Europe, on the other hand, emergency orders are still rarely reported from the ambulatory setting short of palliative care. There is a number of challenging conceptual and ethical questions involved in the POLST issue that have received little attention yet.

Methods

This analysis is based on a systematic literature search, and further draws on our experience with introducing a variant of the POLST, the POLST-in-case-of-emergency (POLST-E), into our German regional ACP program beizeiten begleiten® (‘be caring betimes’) that is based on Respecting Choices®.

Results

POLSTs feature an implicit dual nature: On the one hand, they are a physician's order – on the other, (part of) an advance directive (by proxy). However, the conceptual relation between advance directives (ADs) and POLSTs seems not clear, and neither do the requirements for a skilled facilitation process before a POLST should be signed by all participating parties. A number of other questions deserve consideration, i.e. whether POLSTs are reserved for the terminally ill, or also eligible for the healthy; whether they relate only to the setting where they were originally discussed; and which treatment issues they should (not) cover, with particular consideration of the availability of prognostic information.

Discussion

In summary, the POLST instrument bridges a year-long gap between ADs and emergency requirements. However, unreflected use of the POLST may come along with significant risks and potential side effects, therefore open conceptual and ethical questions deserve debate.
The effectiveness of employing exclusive advance care planning (ACP) clinicians
Authors: Wallis K , Detering K , Whiteside K , Mawren D , Silvester W
Published: May 2012

ACP improves end-of-life care and patient/family satisfaction. Nevertheless, health professionals struggle to include ACP in their busy work schedule in a university hospital environment. In response, since 2008, the Respecting Patient Choices Program has employed nurses exclusively to do ACP. A prospective audit of the activity of these “ACP Clinicians” was conducted 1/1/2010 – 31/12/2011. The audit included patient demographics, reason for referral and ACP activity and outcomes. 1866 patients (median age 76 (18-110), 51% male) were referred. Their primary admission diagnoses were cancer 23% or renal-18%, respiratory-12% or cardiac-10% failure. The main reasons for referral were age/debility/multiple co-morbidities or poor prognosis. Prior to referral 11.5 % of patients had previously appointed a substitute decision maker (SDM), and 5% had completed an advance care plan. 1703/1866 (91%) referred patients were seen by an ACP Clinician. Of these 45% of patients completed ACP documentation: SDM alone (33%), advance care plan alone (11%) or a combination of both (56%). If documents were completed, the time spent per patient was longer (median 90 mins vs. 45 mins) and the number of visits were more (median 2 vs. 1). When patients completed an advance care plan outlining treatment preferences, 56% expressed a wish to not receive cardiopulmonary resuscitation, 45% did not want life-prolonging treatment at all, 45% only wanted treatment if a patient-defined reasonable outcome was expected, and a further 7% delegated the decision to others. Employment of ACP clinicians is an effective method of providing ACP, enabling patients to complete documents if desired.
The development and validation of a questionnaire to audit advance care planning (ACP)
Authors: Heyland DK , Dodek P , Lamontagne F , You JJ , Barwich D , Tayler C , Porterfield P , Simon J , Enns Bert
Published: May 2012

ACP is an established standard of care in many settings. However, no validated tool exists to evaluate patients' and their families' perspectives on ACP. The purpose of this study was to develop and validate a novel questionnaire to evaluate the quantity and quality of ACP from the perspective of a patient and their family member. To develop the questionnaire, items were generated from focus groups with health care professionals and face to face interviews with hospitalised patients. This questionnaire was then piloted and evaluated by a sample of hospitalised patients who had advanced illnesses and their family members. The questionnaire was divided into 2 parts, the first part covering ACP activities before hospital admission (6 questions) and the second part relating to' goals of care' discussions that occurred during hospitalisation (8 questions). 27 patients and 24 family members participated in the pilot. All respondents rated the language, clarity, fit, acceptability, and relevance as ‘fair’ to ‘excellent.’ On a 10 point scale where 1=“Not a burden at all” and 10= “Extremely burdensome,” the average (SD) burden score of patients was 2.2 (1.7) and for family members was 1.6 (0.9). Revisions to the questionnaire were made based on the feedback from respondents. We conclude that our questionnaire to evaluate key ACP practices has face and content validity. Our pilot study demonstrates the feasibility and acceptability of this evaluative approach. By auditing ACP practices, from the patient/family perspective, practitioners may gain key insights into how to improve ACP processes in their settings.
Patient and provider perceptions of advance care planning using electronic health record patient portals
Authors: Bose-Brill S , Kobe C , Pressler T , Wills Celia
Published: May 2012

The electronic health record (EHR) and EHR-tethered patient portals provide innovative opportunities for patient-provider advance care planning (ACP) communication. Development of patient-centred ACP tools for EHR-tethered patient portals requires investigation of barriers to use. An ongoing survey study in Ohio State University primary care clinics is assessing willingness to use OSUMyChart (an EHR-tethered patient portal) for ACP communication. This is phase one of a multiphase project developing a patient-provider ACP communication framework. 27 of 30 physician respondents (90%) indicate that EHR could improve ACP delivery. 34 of 39 patient respondents (87.2%) would respond positively to a provider-initiated ACP discussion. However, only 20 patients (51.2%) are willing to use EHR to discuss ACP. Patients responding negatively to ACP EHR communication have lower rates of internet access (81% vs. 44%) and OSUMyChart activation (52% vs. 17%) than patients who respond positively. Most unwilling patients without internet cite lack of access as the sole reason for reluctance to EHR-based ACP. Possible solutions are on-site technical support and partnerships subsidising internet connectivity for patients without access.

DevelopEH EHR-tethered patient portals for the purposes of facilitating ACP must be coupled with strategies for combating health disparities arising from limitations in electronic connectivity. This presentation will describe: (1) patient and provider responses to potential use of EHR-tethered patient portals in ACP; (2) characteristics of patients conveying reluctance to use electronic resources for ACP communication; (3) strategies for overcoming barriers to EHR-based ACP communication.
What might we expect from our EMR?
Authors: Hammes B
Published: May 2012

Abstract not available.
The development of ACP in New Zealand: the roll the National ACP Cooperative
Authors: Manson L. , Snow B. , Grundy K. , Read T. , Rishworth S. , Leigh Moore Mary , Daltrey J. , Naish M.
Published: May 2012

The development of ACP in New Zealand (NZ) has been driven by clinicians through the National ACP Cooperative (Cooperative). The effective development and deployment of ACP services in NZ requires a national effort to ensure that services are consistent and that they best meet the needs of all people. In the absence of a central government initiative, the Cooperative was formed by clinicians to facilitate this effort. The Cooperative is working to develop a common understanding, framework and direction for ACP in all areas of health. It now works with government and non-governmental agencies, particularly the Ministry of Health, to advance its aims and objectives within the current legal and ethical context in a manner that is coordinated, evidence-based and outcomes focussed. The Cooperative's goals include (1) full community engagement (public and private organisations, Non Government Organisations, networks and the general public) in the design and implementation of ACP; (2) to develop training for health care workers; (3) to grow and support a group of ACP-trained clinicians; (4) to create and control consistency in ACP documentation and to ensure a national mandate for universal documentation and policy development; (5) to influence research on issues related to ACP; and (6) to provide input into and impetus for IT integration. The lessons learnt include the need to focus, grab attention by using stories, engage and to take action. The Cooperative model of ACP development is unique in that it is a clinically-led initiative which transcends organisational boundaries.

Positive Response to ACP via OSUMyChart (n = 21)Positive Response to ACP via OSUMyChart (n = 18)Total (n = 39)Male8 (38.1%)8 (44.4%)16 (41.0%)Female13 (61.9%)10 (55.6%)23 (59.0%)Internet Access17 (80.9%)8 (44.4%)25 (64.1%)Activated OSUMyChart11 (52.4%)3 (16.7%)14 (35.9%)Median Age Range65-7065-7065-70
Designing advance care (incapacity) planning and advance directives legislation in British Columbia
Authors: McGregor D , Clelland C , Barwich D , Porterfield P , Hoffmann C
Published: May 2012

Responding to societal demands, the Province of British Columbia legislators began amending its health care consent and personal planning statutes in 2005, with a particular view to strengthen Advance Care Planning and make Advance Directives a legal option. Initial frameworks met with concern by professional and public organisations and feedback was provided to the Attorney General's office as well as to the Ministry of Health. Province wide consultation with stakeholders informed the new laws which were passed in 2007 and came into force in September 2011. These comprised options for Advance Directives as well as appointment of Substitute Decision Makers (called Representatives). The nature and scope of this collaboration process will be described. Consultations with clinicians, local health care administrators and Advance Care Planning professionals led to a province-wide approach in developing the legislation and regulations, leading to the production of provincially standardised products. These tools include Health Care Provider and Patient and Family guidebooks for developing optional advance care plans, advance directives and representation agreements which do not require lawyer visits. Educational materials (e.g. FAQs, and PowerPoints) have also been developed to educate and upskill health care providers in ACP, and inform them of their responsibilities within the new legislation. This has included the physician community with the development of physician specific materials including a “primer” on the legislation and an ACP video. The process of development of the educational materials and the materials themselves will be shared with participants.
Talking about tricky transitions with young men with Duchenne muscular dystrophy and their families
Authors: Abbott D , Carpenter J
Published: May 2012

This paper draws on research (Abbott and Carpenter, 2010) for the UK Department of Health. This examined the views of 40 young men and their families (n=102 participants) about the transition to adulthood for young men with Duchenne muscular dystrophy (DMD). These young men were once expected to live only into their teenage years but now are living well beyond that. Families have had to respond to an enormous shift in expectations – not just about life expectancy itself – but about how to live and how to talk about end of life issues. There has been an absence of research which has explored these issues from the perspectives of young men themselves. In relation to the shifting realities of living with DMD, there was a strong mantra about ‘living for the day’. Young men said they preferred not to think much about DMD but still wanted people to talk to about it on occasion. Parents said they often did not know what to tell their sons about the disease because they found themselves living with sons who they had simply not expected to be alive. Censorship, collusion, protection of self and others, and silence all featured in accounts from young men and their families. We propose that more emphasis needs to be placed on providing emotional and psychological support to young men with DMD so that dialogue about end of life issues can occur - with consideration given to individual preferences, communication styles, family dynamics and the benefits of peer support.
Implementing the British Columbia practice support program in end of life care
Authors: Clelland C , Barwich D , McGregor D
Published: May 2012

The British Columbia (BC) Practice Support Program, supported by the General Practice Services Committee (a joint program of the BC Medical Association, the Ministry of Health), has been an effective strategy to change and influence the care being offered in GP offices throughout BC. This innovative program has engaged 2000 GPs (of ∼3500 caring for 4.5 million people) in practice redesign since 2007 and now is providing a module to improve the identification, assessment and management of patients at the end of life, including redesign of office processes and procedures that need to be implemented to support a new approach. It integrates aspects of the Gold Standards Framework (UK), the BC Chronic disease management framework, the triple aim of the Institute for Health Care Improvement, with the norms and practices of Hospice Palliative Care in Canada. Participants include GP champions as the teachers together with local palliative care providers, home care nurses, specialist physicians and general practitioners and their MOAs. There are 3 learning sessions interspersed with 2 action periods during which physicians are supported to implement changes in practice like a registry; flags to alert the physician to key changes; more collaborative practice and supports for Advance Care Planning. The algorithm and the clinical support tools embedded in the algorithm have been well received and reinforce a best practice approach. The results of the evaluation will be presented. This may enable others tasked with physician education and practice support to learn from a successful, innovative provincial implementation.
A review of evidence supporting certain disability rights concerns about “end of life” advocacy
Authors: Coleman D , Drake S
Published: May 2012

Attendees will have the opportunity to learn more about disability rights issues from a plenary speakers and an additional presenter. Central topics, with actual examples, will be:

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Rush to judgment cases – “pull the plug” versus “wait and see”

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Elder abuse – health care decisions laws that may appoint abusers as surrogates

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Futile care policies – overruling an advance directive

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Organ procurement policies for upper spinal cord injured, neuromuscular disabilities

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Organ transplant eligibility for people with disabilities

Attendees will be able to consider research from medical literature which reveals “Things people with disabilities know that others spent millions to research about individuals and families”:

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People change their minds about what is acceptable as disease/condition progresses

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Family members don't consistently or correctly predict individual choices

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Family members have conflicts of interest and project personal disappointments onto their family member

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Lack of adequate home and community-based services is a big problem

Attendees will be able to consider research from medical literature which reveals “Things people with disabilities know that others spent millions to research about health care providers”:

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Healthcare providers say things to influence/pressure individuals and families to withhold treatment

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Healthcare providers are not consistently accurate in predicting terminal status

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Healthcare providers devalue people with disabilities and serious health impairments

A constructive relationship between the disability and palliative care communities could be developed based on recognition that healthcare policies affecting people with disabilities must be formulated with people with disabilities “at the table.”
Supporting community engagement around end of life conversations & care, an asset- based approach
Authors: Matthiesen M , Ashton J , Owen E , Froggatt K , McKnight J , Kretzmann J
Published: May 2012

Healthcare systems and local hospices have extensive expertise and community connections around end of life awareness and care, however innovative and cost effective solutions are required to engage the wider (healthy, non-cancer, non-hospice) community if we are to align public preferences with outcomes of care at the local/community level in the future.

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Most adults have personal experience around death, dying, and bereavement.

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Leaders of community organisations are no exception.

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However, the varied backgrounds (personal and professional) must be given a common base upon which to lay the foundation for community-led engagement around this complex and taboo subject.

An innovative programme is proving to be effective inspiring and engaging communities in the Northwest (UK) to launch awareness initiatives, overcoming the taboo of talking about death and dying, improving awareness of the need for advance care conversations, and increasing access to available community-based information and resources. Using a facilitated asset-based approach, partnership projects have been launched with funders, healthcare, hospices, and community agencies across seven communities (rural/city). Outcomes and evaluations to date from more than 150 participating organisations will be shared.
Benefits of increasing skills in the care workforce in recognising end of life in dementia patients
Authors: Bloomer C. , Thorn M.
Published: May 2012

Delivery of End of life care for dementia sufferers in any setting can be very varied with an undue emphasis on a medical and pharmacological model of care. Planning for the end of life for dementia suffers should be based on life story work, engaging the patient and families enhancing the choices for dementia sufferers at the end of life. Commissioned by the NHS to create, pilot and establish a training programme enhancing the skills of the care workforce. This project was designed to improve staff confidence in their ability to plan and assess symptoms for dementia sufferers at the end of life. Training needs analysis demonstrated that there was a requirement for providing participants with a basic understanding of the functions of, and how dementia affects, the brain in order for staff to better understand symptoms and behaviours at the end of life. The training, delivered to all levels of care home staff, comprises of a half day workshop with presentations from an Expert by Experience, from the local hospice on the use of medication at the end of life plus physiology and life story work. The DVD produced as part of the project provided a positive rather than a negative slant on dementia care and there was a self-assessment element both prior to and after the training including a post training evaluation form. The evaluations showed enhanced knowledge and confidence in skills. Attendees felt that the DVD and course workbooks became a good reference source for on-going practice.
Final evaluation of the “Making Health Choices” advance care planning in aged care project
Authors: Sjanta R , Jackson L , Fullam R , Lewis V , Silvester W
Published: May 2012

Published literature suggests that advance care planning (ACP) activity in aged-care homes is inconsistent and often of poor quality. There are few published reports of the effectiveness of formal training and implementation of ACP in aged-care homes. The Respecting Patient Choices Program piloted a training and implementation model in 19 aged-care homes in Victoria, Australia in 2010-11. The model required selected aged-care home nurses and management staff to attend 3 workshops over a 6-month period and complete pre and post-workshop tasks. The workshops included didactic and experiential teaching, discussions and role plays. Model evaluation included ACP documentation audits, in addition to pre and post implementation surveys to examine aged-care home ACP policies and practices, and staff knowledge, attitudes and behaviours around ACP. Key results were as follows:MeasurementPre-training (%)Post-training (%)P value% of staff reporting the existence of written policies on ACP in aged-care homes.531000.008% of aged-care homes. which discuss medical treatment options with resident/family421000.016% of aged-care homes which discuss “things that matter most about life and living” with resident8920.009% of aged-care homes reporting that ACP information is used effectively within the facility.331000.013% of staff reporting that ACP is carried out “well/very well” within their aged-care home.251000.009Mean staff score on ACP knowledge test [SD]4.4 [1.1]5.7 [0.9]0.001

The available data suggests that the RPC model of ACP in aged-care homes succeeded in training staff and implementing ACP.
Providing sustainable, widespread adoption of ACP in care homes
Authors: Thomas K , Stobbart-Rowlands M , Giles L
Published: May 2012

The Gold Standards Framework (GSF) Care Homes training and accreditation programme includes ACP as one of the 20 standards. The accreditation process ensures the standards for quality end of life care are embedded and sustained within the care home, evidenced by portfolio, ADA audit and a visit. Evidence from over 2000 care homes trained, 200 accredited and 50 reaccredited after 3 years reveals sustained improvements in EOLC and ACP, showing a positive impact on the quality of care received toward the end of life and reduction on hospitalisation. Staff have managed ACP discussions well and they have direct impact on the reduction of inappropriate crisis hospital admissions toward the end of life. The GSF care homes programme achieves these sustainable improvements through a staged programme that focuses on the whole system within the care home.- use of ACP to clarify needs but other processes to meet them, to ensure care in alignment with preferences. ACP is taught in various ways as part of the training programme- taught theory, role play, ‘goldfish bowl’, case history, The portfolios of evidence demonstrate attainment of required standards, feedback from relatives and residents, and whole team involvement. If the work is not embraced by the whole team but undertaken as an isolated project, the impact is reduced and the changes are not sustainable. The reaccredited homes have maintained and improved their standards of care and ACP uptake- not just standard practice but enhanced practice- ensuring consistency and continuity
A model for facilitating advance care planning telephonically: description and lessons learned
Authors: Boettcher I. , Turner R. , Cooley M. , Prins S. , Briggs L.
Published: May 2012

Priority Health Case Managers (CMs) work telephonically with members that are frail and have multiple co-morbidities, yet little or no Advance Care Planning (ACP) has occurred. Face-to-face ACP facilitation is successful, but it is unknown whether ACP can be successfully facilitated telephonically. In consultation with Respecting Choices©, a six-month Telephonic Advance Care Planning (TACP) pilot was developed and implemented to test the feasibility of a telephonic model of ACP facilitation by health plan case managers. Secondary goals of the TACP pilot were to provide a standard TACP facilitation skill set to CMs; to evaluate the integration of ACP facilitation into CM workflow; to facilitate ACP discussion and completion of documents for both First Steps© and Last Steps© protocol; to engage members' physicians in TACP plan; to provide pilot CMs support, and document their skill development; and to create a TACP dissemination plan for all health plan CMs. TACP facilitation protocols were developed and integrated into the electronic assessment tool, CMs were trained, member eligibility criteria were developed, frequent meetings were held for pilot staff, and CM skill assessment was documented. The TACP pilot demonstrated the feasibility of telephonic ACP facilitation for frail elders with advanced disease. There was acceptance of the telephonic model by CMs, members, primary care physicians and health plan staff. The successes and lessons learned allowed TACP dissemination to all CMs.
Involving Physicians in Upstream Conversations: The Serious Illness Communication Checklist
Authors: Block S
Published: May 2012

Background: Early discussion of end-of-life issues has been found to be associated with better quality of life, reduced use of aggressive care, earlier hospice referral, improved bereavement outcomes for survivors, and reduced costs. Yet, such conversations do not occur regularly for patients with serious illness. Barriers to such conversations are found in patients, physicians, and the health care system. In this presentation, we will review data about the benefits of early discussions, describe the rationale for the use of a checklist to improve discussions of end-of-life issues, describe appropriate “triggers” for such conversations, and review risks and benefits of early discussions. Based on an extensive development process we will propose an evidence-based Serious Illness Communication Checklist (SICC) that is designed to guide early clinician discussions with patients and their families about values and goals about end-of-life care, review a training program for physicians and other clinicians to prepare them to use the SICC, and describe a system-wide approach for communicating patient values and goals through use of a structured format within the electronic medical record. Finally, preliminary impressions from the early phases of a prospective, cluster randomized trial in oncology will be described.
Advance Care Planning from a Canadian Perspective
Authors: Davison S
Published: May 2012

The Canadian Parliamentary Committee on Palliative and Compassionate Care in 2011 recommended the development and implementation of a national palliative and end-of-life care strategy. In response, the Speak Up campaign was launched to raise national public awareness of the importance of advance care planning (ACP) and has begun a national conversation about planning for end of life care by providing access to shared tools and terminology, making it easier for Canadians to share their preferences for future care with family, friends and health professionals. Provincial-wide clinical practice and policy initiatives are currently being developed and implemented, both disease specific and non-disease specific, to facilitate ACP. This presentation will discuss these initiatives, along with their successes and challenges.
The Future of Advance Care Planning: Will it be a Bright One?
Authors: Briggs L
Published: May 2012

Advance care planning (ACP) has gained momentum as a vital component of quality healthcare decision making for all individuals, and for optimizing palliative and end-of-life care for those with advanced illness. However, the ultimate and potential impact of ACP services will be dependent on the answers to several key questions. How will ACP services be appropriately embedded into the routines of care delivery models over the lifetime of an individual? Can there be consensus on the outcomes that should be achieved when building ACP services? Will the role of the ACP facilitator be embraced as an integral component of an ACP team that delivers competent and reliable planning assistance? How will these individuals be trained and reimbursed for their services? What commitment will be required of organizational and community leaders in developing an ACP system that is sustainable and enduring? Will improved strategies be developed that provide flexibility in documenting individual preferences for treatment decisions and effective strategies for storage and retrieval be created? This session will explore these questions and provide the presenter's reflection on her 14-year history assisting organizations throughout the world in implementing improved ACP programs and practices.
A common sense approach to advance care planning: translation of theory into every day front-line practice
Authors: Wilkinson A , Lynn J
Published: May 2012

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. This presentation provides guidance and real-life examples for implementing ACP practices in local settings, summarising over 12 years of successful ACP and related clinical quality improvement 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 quality improvement activities, test ‘front-line’ ideas and successful practices in the daily care routine; and change the ‘usual’ healthcare delivery setting culture by making quality improvement 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 workshop adds to the evidence base and demonstrates how QI can help improve ACP by using the PDSA cycle for clinical quality improvement in an effective, example-based presentation; focusing on the specifics of real-world clinical team experience, in a variety of health delivery settings; and providing a tested pragmatic approach to advance care planning.
Advance care planning (ACP), and its impact in the renal unit
Authors: Silvester W , Wallis K , Chaffers D , Whiteside K , Detering K
Published: May 2012

ACP improves end-of-life care and patient/family satisfaction. ACP was implemented in the nephrology department of a university hospital in 2010. Patient and ACP activity data was collected prospectively to audit the ACP process and assess its impact on patient outcome. Data was collected from 1/2/2010 to 1/8/2011, including review of deceased patients' files. 197 nephrology patients were seen (median age 69 (21-91), 68% male). 81% were receiving dialysis, 8% pre-dialysis, 7% post-transplant and 4% were non-dialysis patients. 63% completed documentation: 16% appointed a substitute decision maker only, 3% an advance care plan only, or 81% did both. Of those who completed an advance care plan 69% stated they did not want CPR, 17% did not want life-prolonging treatment at all, and 78% only wanted life-prolonging treatment other than dialysis if their specified minimal outcome was anticipated. 31/197 (16%) patients (median age 80) died: 29/31 were dialysis patients (median dialysis duration prior to death 4.2 years). 72 % of deceased dialysis patients had dialysis electively ceased prior to death (median time withdrawal to death 2 days), 7% patients died suddenly outside of hospital, 7% patients specifically requested dialysis continue, but died, and 14% patients had a cardiac arrest during dialysis and died. Deceased patients wishes were known and respected in 68%, unknown in 19%, or known and not respected in 13%. Whilst ACP facilitates patient-initiated dialysis withdrawal it usually occurs late and too many patients are receiving unwanted treatment.