bluuebunny/crossref_metadata_2025 huggingface dataset:
The unique Singapore medico-legal landscape: impact on advance care planning & end of life decision-making
Authors: Menon S
Published: May 2012

Death is a taboo subject for many Asians. Singapore's healthcare decision-making laws have been significantly shaped by this consideration given its diverse cultural and ethnic population. Apart from the common law, Singapore enacted the Advance Medical Directive Act (AMDA) in 1996 and the Mental Capacity Act (MCA) in 2008. The “let's not talk about death” attitude that existed in 1996 has seemingly been transformed into a “let's plan for the future” mantra evident in the MCA. These laws should complement each other but several provisions are not aligned with this new vision and others are internally inconsistent. The AMDA allows individuals to make an Advance Directive (AD) authorising the doctor to withhold extraordinary life-sustaining treatment where they are terminally ill, lost capacity to make healthcare decisions, and death is imminent. Healthcare professionals cannot ask patients whether they made an AD because it is a criminal offence to do so. Since its introduction, fewer than 12,000 people have made an AD. In contrast, the MCA empowers individuals to appoint a proxy healthcare decision-maker to make decisions on their behalf if they lose capacity in the future. However, if the treatment is life-sustaining or to prevent a serious deterioration in the individual's condition, then decision-making power shifts from the appointed proxy to the doctor. Given this background, this paper will examine the introduction of ACP in Singapore in light of the current legislation and common law. Its impact on ACP and end of life decision-making will be reviewed and recommendations made.
A collaborative engagement of advance care planning within a diverse chronic disease population
Authors: Murphy-Burke D , Robinson W
Published: May 2012

Patients living with Chronic Kidney Disease (CKD) have a high symptom burden associated with multi-co morbidities including diabetes and cardiovascular disease. The annual mortality rate of CKD patients is 25%, most of whom have not had the opportunity to engage in Advance Care Planning (ACP). This reality spurred on the British Columbia Provincial Renal Agency (BCPRA) to engage dedicated renal leaders from within BC to develop an ‘End of Life Framework’ for renal patients. This framework includes guidelines and recommended steps to address ACP with renal patients within B.C.'s 5 geographic Health Authorities (HA). We will describe the collaborative development of this framework and the subsequent implementation of a systematic, interdisciplinary approach to ACP within a culturally diverse 275 patient, haemodialysis unit at St. Paul's Hospital, Vancouver. We will share the successes as well the obstacles and mitigation strategies of implementation, from initial planning, program engagement, comprehensive staff education through to a pilot using the My Voice document and evaluation. We will share how ACP protocols are now embedded in the practice of a core interdisciplinary ACP team. First year audit results that indicate a marked improvement to a minimum 40% of haemodialysis patients having documentation of ACP conversations will be discussed. We will describe how the learnings from the ACP implementation at this renal unit are being shared and applied in diverse renal settings across this province.
Minorities and Advance Care Planning
Authors: Ramsey G
Published: May 2012

Abstract not available.
Nurse practitioner Bi-level clinics for patients with morbid obesity
Authors: Hart D
Published: May 2012

Obesity is a substantial public-health crisis in the developed world. The prevalence is increasing rapidly in numerous developing nations worldwide. This growing rate represents a pandemic that needs urgent attention if its potential morbidity, mortality, and economic tolls are to be avoided. Morbid obesity is a serious health condition that can interfere with basic physical functions such as breathing or walking. . Those who are morbidly obese are at greater risk for illnesses including diabetes, high blood pressure, sleep apnoea, gastro oesophageal reflux disease gallstones, osteoarthritis, heart disease, and cancer. Although the exact magnitude of the attributable excess in mortality associated with obesity (112,000-365,000 excess deaths annually) has been disputed, obesity is indisputably the greatest preventable health-related cause of mortality after cigarette smoking. The Bi-level clinics were started for patients who required constant nocturnal Non Invasive Ventilation (NIV) at home for morbid obesity. Their care is delivered by the Respiratory Nurse Practitioner with back up from other members of the respiratory team as required All the patients with obesity seen in the clinic have very high BMI's ranging from 44-92.They are all at significant risk of dying from multiple co- morbidities. The Nurse practitioner has taken the responsibility to have and document end of life discussions with these patients following the death of one patient that turned into a media frenzy. It divided many people in New Zealand who had not understood the major underlying problem for the death. The aim of the Bi-level clinics is to provide specialised expert care to this vulnerable group of patients who have multiple medical and social issues. As a Nurse practitioner with many years of experience with the variety of ethnicities in the hospital catchment I feel I can offer a quality service for these patients many of whom have now avoided hospital admission for several years.
Sustaining respecting patient choices® (RPC) advance care planning
Authors: Hunt R , Jones L , Owen L , Seal M
Published: May 2012

The Central and Northern Adelaide Local Health Networks in South Australia (SA) oversee four major hospitals and a range of sub-acute and primary health care services. The Respecting Patient Choices (RPC) Program has been rolled out progressively across the two Networks, in parallel with the country Network, by a Project Team. The Project has worked towards embedding Advance Care Planning (ACP) and appropriate use of advance care plans across the health continuum. It has focused on supporting organisations through: training; developing system support and accessible resources; strengthening partnerships; and facilitating strong leadership in ACP. The lessons from this project have been integrated into a state-wide model for ACP which includes: the establishment of an RPC Trainer/Liaison position to support trainers Statewide; and aims to have a network of RPC Portfolio Leads in organisations responsible for maintaining ACP development. In SA over 2,500 RPC Facilitators are trained across ∼250 organisations including acute, GP Divisions, aged care, and community services. The Program has brought about improvement in ACP. For example: within 67 organisations, over 1400 patients are registered with ACP hospital Alerts, with an estimated 1600 created in the community above base line in 12 months. RPC in SA is assisted by effective legislation, Consent to Medical Treatment and Palliative Care Act 1995, producing policy that enables health workers to honour ACP. RPC is bringing to effect SA's Health Care Plan commitment to provide ACP as part of appropriate care to the older person and transmission to a sustainable model is underway.
Co-designing ACP service delivery with consumers in New Zealand
Authors: Manson L. , Snow B.
Published: May 2012

Auckland District Health Board together with the New Zealand ACP Cooperative held co-design workshops with consumers to explore how consumers want ACP services delivered. The questions and topic areas covered included (1) who should be involved; (2) what do you want to plan for; (3) when should these discussions take place; (4) where should ACP be done; and (5) how should ACP be done? The key themes - the ACP process should be owned first and foremost by the patient and that medical and end of life care experts should be a resource for families to draw upon as advisors and enablers of the ACP process, not the owners or drivers of it. ACP conversations need to be normalised and should take place in people's homes or in community settings. For many people living is hard enough (i.e. making ends meet) let alone planning for death. The practical aspects of living and dying took precedence– not medical care and treatment decisions. To successfully roll-out ACP to the general population, its delivery needs to be owned by the community and consumer groups. As a result of these workshops, alternative models of ACP delivery are being explored including public awareness, education, public debate, cross-sector collaboration and the use of humour. ACP has largely developed out of medical need for informed decision-making to address the changing dynamics of dying. These workshops suggest that it may have evolved differently if it grew out of the consumer's end-of-life planning needs.
Sorry, but it's my business!
Authors: Wighton M
Published: May 2012

Aboriginal people generally do not think about or have much input into their advanced care plans or end of life business. In some areas it was taboo to speak of someone's death or journey to death, whether it was for cultural, personal, or spiritual reasons. With consideration to peoples beliefs and customs, more evidence has shown the need for Aboriginal people to be personally involved in their end of life planning, or as it is called, their “Sorry Business”. A program through Mungabareena Aboriginal Corporation was initially developed to support people to:

Think about their end of life needs.

Talk and discuss ideas and wishes.

Act upon personalising a plan through practical application.

The program aims to bring together clients and families, service providers and community people over a period of time, allowing information and discussion to be exchanged in a positive way. Groups and individual sessions are held allowing participants to gain information and share thoughts and experiences. The positive outcomes have been the desire for Aboriginal people to have personal involvement in their care plans and own Sorry Business. End of life choices are now known in regards to funeral funds, burials and cremations, organ donations, pets, wills & estates and other wishes that may be carried out whilst limiting the stress and uncertainty for families. Whilst primarily focusing on the elderly and the sick, the long term goal would be to see all Aboriginal people give consideration to their own “Sorry Business”.
The ‘heart’ of the matter: that's where advance care planning engagement begins
Authors: Robinson W , Grant S
Published: May 2012

As we look at best practice and research in ACP, we must not overlook the humanity and vulnerability we share with our colleagues, our patients and their families - the key to ACP engagement. ACP is about expressing wishes, values and beliefs for care at a time when people are most vulnerable, perhaps unable to communicate for themselves, and perhaps approaching death. It is the inevitability that we all will face, personally and with loved ones. When we share personal stories about ACP with health care professionals and the patients and families we serve, a synergy of personal stories and engagement emerges. Stemming from our ACP discussions with patients and families, and the experience of program implementation and ACP facilitation education with physicians and staff, this presentation will illustrate that it is through stories that speak to our common vulnerability and humanity that health care professionals are inspired to incorporate ACP more fully into their clinical practice, and patients and families ‘get’ the importance of talking about their future health care wishes.
H.R. 1589: addressing racial and ethnic disparities in advance care planning among medicare beneficiaries
Authors: Effiong A , Myrick D
Published: May 2012

U.S minorities continue to have poorer health outcomes and are more likely to have worse quality of care. These gaps are partly attributed to socioeconomic status, public health practices, and lifestyle behaviours. These disparities become even more pronounced at the end of life because minorities are less likely to complete advance directives, enrol in hospice, receive appropriate symptom management, or be satisfied with the quality of care and communication. Cultural preferences, values, and mistrust of healthcare providers result in lower rates of advance care planning among minority patients who are terminally ill. These disparities can be minimised through interventions tailored toward minority populations that are resistant to change. To address these gaps, H.R. 1589 (Personalise Your Care Act of 2011) encourages voluntary consultations between physicians and patients to discuss advance care plans, allows for reimbursement through Medicare, promotes extended and complex counselling for the development of end of life care plans regardless of race or ethnicity, and supports routine advance care planning in community and clinical practices. In this presentation, the authors will discuss: the strengths and limitations of H.R. 1589, how to successfully engage patients in advance care planning discussions, and the use of information and communication technology (ICT) to influence provider behaviour toward minority patients.
Advanced Care: Why We Need New Clinical Model
Authors: Stuart B
Published: May 2012

Health care in the developed world is fractured across 3 distinct dimensions: space, time, and treatment. Poor handoffs between settings fragment care in the spatial dimension. As illness advances, evolving personal choices are not tracked in real time, so care becomes disconnected from patient preference. Finally, “curative treatment” and “comfort care” have become mutually exclusive. Seriously ill patients undergo hospitalizations, procedures and tests that confer little benefit until they no longer respond. At this point they are declared “terminal,” “treatment” ceases, and they become eligible for hospice. Palliative care alone cannot heal these splits, because it is confined mainly to the hospital setting, and it suffers from the same stigma of dying that afflicts hospice.

Advanced Care proposes a new clinical model that coordinates care across all settings, documents personal choice over the whole course of late-stage illness, and provides a customized mix of treatment and comfort care that gives seriously ill people a chance to stay at home, stable and safe, for as long as possible. Advanced Care is person-centered, not patient-centered. In fact, it allows people with serious illness to avoid becoming patients. Data from innovative programs show that's what most of them want. Significant cost savings are a fortunate but unintended byproduct. A standardized model and metrics, along with systematic evaluation through a multi-site national pilot, are needed to provide access to the growing number of people who would benefit from this approach.
How do we train professionals to deliver a new model of care?
Authors: Hylton-Rushton C
Published: May 2012

New models of healthcare delivery focusing on persons with advanced illness require alignment of education and training with clinical outcomes. The centerpiece of an advanced care model is a person-centered, holistic approach that is provided by members of the inter-professional team, family caregivers, and community across settings and continuum of care. Qualities such as respect, dignity, empathy, compassion, and resilience must be cultivated within and among members of the inter-professional team to achieve the desired clinical outcomes. When successful, patient goals are aligned with appropriate technology and treatment, values, and resources.

The Coalition to Transform Advanced Care (CTAC) is developing an inter-professional learning laboratory that leverages current educational curricula and resources with innovative new curricula that address gaps in education and training. The goal of the learning laboratory is to offer diverse professionals an opportunity to assess their learning needs in relation to the outcomes of the CTAC clinical model, design unique curricula, and use related resources to become proficient in the knowledge and skills needed to provide high quality care to people with advanced illness. Similarly, clinicians will need additional tools to simultaneously deliver personalized care and intentionally shift the systems of care surrounding the person with advanced illness. The learning laboratory will offer diverse, flexible methods of learning, including experiential, cognitive, technology enabled and skills based options. A unique feature of the learning laboratory is the inclusion of patients living with advanced illness and their families in the inter-professional teaching-learning process.
How sharing stories can improve service coordination to provide optimal care
Authors: Hawke J
Published: May 2012

It is twelve months since the development of an “Information sharing tool” for use within the Aboriginal Community. There has been an increase in service coordination and the use of services for those with Dementia, those requiring palliative care and other services to remain living in their community. Research has shown that a record of a client's life story (including medical, family, career, likes/dislikes information) is beneficial for staff to provide culturally appropriate care and conversation. Medical Officers are now contacting the Aboriginal Community Controlled Organisation (ACCO) to request the booklet be completed with their Aboriginal clients. This has increased the relationships between the Aboriginal Community Controlled Organisation staff and mainstream Organisations that provide palliative care services to the clients. Aboriginal clients tend to go directly to the ACCO for support in the first instance. In most cases the ACCO staff has the trust and relationship with the client that the mainstream service may have not had time to establish. Studies have shown that conversations and a trusted relationship are key to providing optimal care. Whilst the booklet was first established to ensure a person's life history was not lost, when diagnosed with dementia, it is now being recognised as a useful tool to engage with clients to increase the uptake of services and to ensure the appropriate care is offered and received.
Reliability of a computer-based decision aid for advance care planning
Authors: Schubart J. , Green MJ. , Whitehead M. , Farace E. , Lehmann E. , Levi BH.
Published: May 2012

One of the concerns with advance directives as a means for promoting advance care planning is that advance directives are unreliable as a mechanism for articulating and documenting an individuals values and wishes. Making Your Wishes Known (MYWK) is an interactive computer program that guides people through the process of advance care planning; explains health conditions and interventions that commonly involve life or death decisions; helps individuals articulate their values/goals; and translates users' preferences into a detailed advance directive document. This pilot study examined whether (in the absence of major life changes) the advance directive generated by MYWK reliably reflects an individual's values and preferences. English speakers ≥ 30 years old were recruited from a single community center; screened for reading level, depression, and cognitive ability; and asked to complete MYWK twice, 4-6 weeks apart. Reliability indices were assessed for 3 advance directive components: General wishes; Specific wishes for treatment; and Quality of life values (QoL). The 24 study participants who completed the study were predominantly female (79%) and older (mean age = 68 years). Under classical theory testing, both the Specific Wishes and QoL scales had high internal consistency in both time periods (KR-20 = 0.83-0.95, 0.86-0.89). Test-retest reliability was perfect for General Wishes (κ=1), high for QoL (Pearson's =0.83), but lower for Specific Wishes (Pearson's=0.57). This pilot study provides evidence that a computer-based decision aid can generate advance directives whose General Wishes and QoL (but not Specific Wishes) statements remain consistent over time.
Use of an interactive computer program for advance care planning with African American participants
Authors: Levi BH , Schubart J , Markham S , Whitehead M , Farace E , Lehmann E , Green MJ
Published: May 2012

For various cultural and historical reasons, African Americans are less likely than Caucasians to engage in advance care planning (ACP) for healthcare decisions. This pilot study tested whether an interactive computer program could help overcome barriers to effective ACP among African Americans. African American adults were recruited from traditionally Black churches to complete an interactive computer program on ACP, pre-/post-questionnaires, and a follow-up phone interview. Participants were screened for cognitive ability, moderate/severe depression, and ≥8thgrade reading level. Eighteen adults (mean age = 53.2 years, 83% female) completed the program without any problems. Most participants (14/18) reported knowing “almost nothing” or “a little” about ACP prior to the study, and only 2 participants reported having previously created an advance directive. Knowledge about ACP significantly increased following the computer intervention (44.9% → 61.3%, p = 0.0004), as did individuals' sense of self-determination. Participants were highly satisfied with the ACP process (9.4; 1 = not at all satisfied, 10 = extremely satisfied), and reported that the computer-generated advance directive accurately reflected their wishes (6.4; 1 = not at all accurate, 7 = extremely accurate). Follow-up phone interviews found that most participants reported having shared their advance directives with family members (88%) and spokespeople (82%). Preliminary evidence suggests that an interactive computer program can help African Americans engage in effective advance care planning, including creating an accurate advance directive document that will be shared with loved ones.
How ePOLST will improve shared, informed medical decision-making: applying the eMOLST experience in New York
Authors: Bomba P.
Published: May 2012

The Physician Orders for Life-Sustaining Treatment (POLST) Paradigm Program is designed to improve the quality of care seriously ill patients receive at the end of life. The process results in documentation of medical orders on a brightly colored form that health care professionals must follow. POLST is a standardized community-wide form that transitions with patients across all care settings. Medical Orders for Life-Sustaining Treatment (MOLST) is New York State's approved POLST Paradigm Program.

The electronic Medical Orders for Life-Sustaining Treatment (eMOLST) is a secure web-based application that assists providers in having the MOLST discussion, documenting the clinical steps and fulfilling legal requirements under New York State Public Health Law.

eMOLST improves quality outcomes and meets the six aims of the Institute of Medicine's Crossing the Quality Chasm, as it is safe, effective, patient-centered, timely, efficient and equitable:

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Safe- built-in quality controls for correct orders; does not allow for inconsistent medical orders

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Effective- enables providers to follow clinical steps and meet legal requirements

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Patient-centered- goals for care guide choice of interventions

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Timely- web-based; assures accessibility across care transitions, including documentation of discussion

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Efficient- more time for discussion; less time for documentation, while ensuring accuracy

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Equitable-integrates needs of adults, minors, developmentally disabled who lack medical decision-making capacity; can be used in all clinical care settings
Informed decision making in advance care planning: concordance of patient with physician diagnosis
Authors: Schubart J. , Toran L. , Levi BH. , Whitehead M. , Farace E. , Lehmann E. , Green MJ.
Published: May 2012

Because disease diagnosis and prognosis affect the decisions that patients make when creating advance directives, an understanding of one's diagnosis is important for successful advance care planning. Yet often there exists a wide disparity between physician and patient understanding of the patient's disease, making the goal of shared decision-making difficult to achieve. This study examined the extent to which patients with advanced cancer agree with their physicians regarding their cancer diagnoses prior to engaging in advance care planning and explored variables that might correlate with the degree of patient-physician concordance. 150 patients with a diagnosis of cancer and life expectancy of 1-2 years or less completed a questionnaire on their diagnosis before they engaged in creation of an advanced directive. The physician-designated diagnosis was identified for each patient via chart-review. Patient-physician agreement on diagnosis was coded and concordance rates were expressed in percentages. The majority of patients (62.2%) were in exact concordance with their physicians regarding their diagnosis; 24.3% were in partial agreement, with the patient missing part of the diagnosis; 9.5% were in partial agreement, with the physician missing part of the patient-reported diagnosis; and only 4.1% did not agree with their physicians on diagnosis. No correlation was found between patient-physician concordance rates and age, education level, or comfort with computers; nor was a higher degrees of concordance correlated with having received radiation therapy, which might have been expected due to the greater number of hospital visits and opportunities for reinforcement of information.
Where are we going (or where do we need to go) with Advance Care Planning?
Authors: in der Schmitten J , Marckmann G
Published: May 2012

Introduction: Since regional advance care planning (ACP) programs have demonstrated effects that to many seemed impossible until recently, widespread implementation into regular care is a matter of time. But where are we heading for, and how can we get there?

Methods: Review of the literature and analysis of experiences with a German ACP program.

Results: ACP is a powerful concept to strengthen patients' autonomous choices in situations of severe illness. As ACP requires a change in decision making culture, it cannot be decreed – it needs to be implemented in an evolutionary regional process, involving the community and relevant health care institutions. Most countries will need to see thriving ACP pilots before nation-wide programs can be launched. However, barriers and pitfalls have to be considered. Realizing patient autonomy is not embraced by all, some worry that ACP will pave the way for active euthanasia, and many fear a hidden health-economic rationale. In order for an ACP program to become a sustained success, the resulting care plans must prove to be both relevant (i.e., making a difference) and valid (i.e., congruent with the person's true intention). Relevance and validity of advance care plans, however, are primarily a function of skillful facilitation. Besides transparency of economic incentives, research and implementation policies should concentrate on facilitator qualification, standards of the facilitation process, and assessments warranting that advance care plans are relevant and valid.

Conclusion: In the long run, ACP programs will stand or fall with the proven quality of the implemented professional facilitation process.
How to evaluate an advance care planning policy – strategies for each stage of implementation
Authors: Wityk Martin TL , Berg B , Simon J
Published: May 2012

In 2008, the “Advance Care Planning: Goals of Care Designation (Adult)” policy (ACP:GCD) was systematically implemented throughout the Calgary Zone of Alberta Health Services. A comprehensive evaluation plan was imbedded pre and post implementation across all health sectors. Key indicators were identified to measure policy outcomes. A diverse and flexible evaluation model was developed for differing stages of implementation. Evaluation successes and challenges will be outlined. The outcomes achieved demonstrate the successes of a comprehensive ACP policy framework. Our evaluation approach was critical to ensuring full policy integration. A large scale comprehensive chart audit was conducted across all sectors at baseline, 6 and 18 months post implementation; additional charts were reviewed as needed (total of 18669 charts). Key outcomes relating to policy implementation, transfer of information, and end of life care preferences being followed were achieved in all sectors. At 18 months, 4 out of 5 sectors had GCDs on at least 93% of their charts. GCDs transferred from acute care to facility living 84% of the time. 97% of GCDs were followed at end of life. Outcome data informed strategies for ongoing integration of the policy, areas for continued quality improvement and gaining and sustaining organisational support. Three years post implementation, a different approach to evaluation is required. Although data demonstrates increasing adherence to policy principles, areas for continued improvement were also identified. We will present targeted quality improvement activities being used to address gaps and barriers.
Advance care planning and the management of implantable cardioverter defibrillators at the end of life.
Authors: Beattie JM , Kirkpatrick JN
Published: May 2012

Heart failure (HF) due to left ventricular systolic dysfunction is a burgeoning epidemic with about 25 million cases worldwide. Over the past 20 years there have been major advances in our understanding of the pathophysiology of this condition with development of evidence based pharmacological, surgical and device therapies. HF patients are prone to lethal tachyarrhythmias, and the use of implantable cardioverter defibrillators (ICDs) to monitor and treat this hazard has increased exponentially. Many patients now receive ICDs as standalone devices, or combined with cardiac resynchronisation therapy (CRT-D). Despite our best therapeutic efforts, HF tends to progress inexorably. The activity of these devices, especially defibrillation shocks, can discomfort those dying of HF or an unrelated comorbidity. Advance care planning (ACP) is poorly utilised in HF care, but recent guidelines from the US and Europe have suggested that ACP should be central to the handling of such devices at the end of life. Implementing such policies may be challenging. Previous studies have demonstrated that both device recipients and physicians may be reluctant to broach the issue of ICD deactivation, and some healthcare professionals are uncertain about the ethical framework and legal implications. Significant clinical dilemmas may arise. In this workshop the authors will: outline the background to these concerns, describe the clinical features of advanced HF when ICD deactivation should be considered, present recent, published data from ICD patients on end of life device management and discuss the practicalities of ACP relevant to the affected population across a range of clinical settings.
The five year plan: implementing comprehensive advance care planning in a large health system
Authors: Schellinger S
Published: May 2012

The patient self-determination act was effective in lifting advance directives (AD) as a recognised and accepted tool to document treatment wishes but did little to increase the completion of AD (29% Americans complete AD), ensure wishes are honoured or ensure an AD is available to assist in decision making. Success in honouring wishes is possible if there is commitment to:

Endorse standards which support infrastructure and processes to introduce and encourage advance care planning (ACP).

Build systems to document wishes, store/retrieve AD, and referral mechanism to access resources.

Educate, train and provide access to staff for facilitating three levels of ACP (basic, complex, POLST).

Develop patient education materials and engagement strategies to promote ACP completion.

Adopt policies, ongoing quality and process improvement strategies to identify gaps in the systems to honour wishes.

A large Midwest health system has been successful in maintaining these five ACP commitments over a five year period as demonstrated by:

Ten thousand clinicians and volunteers completing ACP education and training (new employee orientation standard).

Prevalence AD in the medical record for those discharged alive and dead (16% vs. 38%, 15% vs. 30%).

Completing 16,313 facilitated ACP discussions by trained staff with completed health care directives, disease specific statement of treatment preferences or POLST (provider order for life sustaining treatments).

Increasing access to ACP resources (400 to1200 ACP referrals/month).

Centrally locating ACP documentation across settings.

Establishing ACP reimbursement.

System wide accountability of ACP.
Opportunities to improve end-of-life communication and decision-making for seriously ill hospitalised patients and their families
Authors: You JJ , Heyland DK , Dodek P , Lamontagne F , Barwich D , Tayler C , Porterfield P , Simon J , Enns Bert
Published: May 2012

In face-to-face interviews with seriously ill patients and/or their family members, we used a validated questionnaire to assess key components of in-hospital end-of-life (EOL) communication and decision-making at 11 Canadian hospitals. We report preliminary data from 123 seriously ill hospitalised patients (age 80±9 years, mean±SD) and 77 family members (age 62±13 years). Patients rated being comfortable and minimising suffering as 8.8±2.5 (1=not at all important; 10=very important) and avoidance of being attached to machines as 7.5±3.5. Nearly 50% of participants reported that a decision was made in hospital about the use of life-sustaining treatments (LST) in the event of a life-threatening deterioration. However, when patients were asked about EOL communication with their in-hospital care providers, only 8 (6.5%) reported receiving a disclosure of prognosis, 37 (30.1%) received information about comfort measures to control symptoms, 15 (12.2%) were asked what was important to them when considering decisions about EOL care, and 16 (13.0%) had discussed the risks and benefits of life-sustaining treatments (LST) with a physician. In family members who were asked about EOL communication regarding their relative (the patient), 12 (15.6%) received a disclosure of prognosis, 24 (31.2%) received information about comfort measures, 12 (15.6%) were asked what was important to them when considering decisions about EOL care for their relative, and 11 (14.3%) had discussed risks and benefits of LST with a physician. There are many opportunities to improve the quality of EOL communication and decision-making with seriously ill hospitalised patients and their families.
Advance care planning by respiratory physicians with patients with COPD. A pilot survey
Authors: Smith TA , Kim M , Piza M , Davidson PM , Jenkins CR , Ingham JM , Clayton JM
Published: May 2012

Severe Chronic Obstructive Pulmonary Disease (SCOPD) is associated with unpredictable deteriorations, morbidity and mortality, suggesting a role for advance care planning (ACP). Little is known about the practices and attitudes of respiratory physicians (RPs) to ACP. No tool to assess RPs practice of ACP was identified following a literature search. In developing a tool, items from several validated tools were combined. The resultant tool was assessed for face validity and piloted. 40 RPs were invited to pilot the tool and 17 (43%) responded. Over half (56%) RPs discussed ACP with than less 50% of their current SCOPD patients. When discussions occurred, 80% reported they were “mostly” or “always” in the inpatient setting. While issues of diagnosis and incurability of COPD were commonly discussed, appointment of a health care proxy, the patients' values and goals and palliative care options were rarely addressed. ACP discussions led to understanding of patient preference for 69% of respondents who undertook these. Barriers to ACP included prognostic difficulties, patient and time related factors facilitators included increasing patient frailty and willingness to discuss ACP. Many RPs (35%) reported no formal training in ACP, but almost all reported learning ACP skills by observation and 80% were interested in further ACP education. This promising pilot suggests that ACP discussions SCOPD occur during acute inpatient care, rather than in advance. The responses and practices of RPs suggest an encouraging desire for education and skill enhancement. Refinement of the tool, further exploration of the views of RPs is planned in order to tailor educational strategies.
Three steps forward two steps back: implementing advance care planning across a health care system
Authors: Becker A
Published: May 2012

Creating a system wide change in Advance Care Planning (ACP) has proven to be challenging. Sentara Healthcare is piloting multiple ACP projects across their health system; Home Care, Skilled Nursing Facilities, Employees, Primary Care, Clinics, Hospitals and Hospice. The ACP design includes new literature, scripting for staff, utilisation of My Chart online information, a facilitated discussion format, and various process changes. Preliminary results with patients with a cancer diagnosis in an outpatient setting, showed only a 25% completion rate of ACP facilitated sessions. Yet of those participating customer satisfaction was high. Skilled Nursing Environments moved to the use of group education in to disseminate ACP information due to difficulties in reaching their larger often transient population and family supports. Several key components are being found to need to work in tandem to promote our success. One is the use of a common technique by Sentara and other health systems through out the state (Gundersen Lutheran- ‘Respecting Choices’.) This creates a single language and compatible care delivery processes. Changes to our electronic medical records system allowed for a clinically integrated ACP system for documentation and retrieval. And finally delivery of the ACP program simultaneously across the system allows for effective communications and hand offs. This combination of a single model, a single recording system and cross implementation has allowed Sentara to lay a solid foundation for ACP and better patient care.
Advance care planning and pulmonary rehabilitation: participation and patient perspectives
Authors: Nicholes M , Burge AT , Lee A , Purcell S , Miller B , Norris N , McArdle S , Sandilands S , Holland AE
Published: May 2012

Patients attending pulmonary rehabilitation generally have moderate to severe lung disease and are at increased risk for life threatening cardio-respiratory events. Enabling people with chronic lung disease to make informed choices about end of life care should be a high priority. However many health professionals are concerned about how to introduce advance care planning to these patients. The potential risk of upsetting patients and families and disengaging them from self management programs may be a barrier to the inclusion of advance care planning into standard care. In challenge to this assumption our study has shown that patients are receptive to ACP education delivered in a group setting by a non-medical professional in pulmonary rehabilitation and maintenance programs. Participants in PR&MP who attended a group ACP information session were invited to take part in semi-structured interviews regarding their experience and perceptions. Participants who chose not to attend the group ACP information sessions were also interviewed regarding the reasons for their choice. Iterative thematic analysis was undertaken. Major themes included the appropriateness of the setting; the key role of the educator; and that the session prompted discussion and action. No differences in themes between community and hospital settings were evident. Participants in this project strongly identified with the ACP educator, both in terms of modelling and illustration of the universal applicability of the concept. ACP was well accepted as part of a group education program within PR&MP, as assessed by a broad range of participants.
POLST forms within an acute care setting
Authors: Fullam R , Detering K , Silvester W
Published: May 2012

There are only a limited number of studies on the content and completion of Physician Orders for Life Sustaining Treatment (POLST) forms. No study has specifically examined the use of POLST forms within an acute hospital setting. We audited 1096 randomly selected Resuscitation Plans, a locally developed form of POLST, completed in a university hospital during 2011. Matching patient identification numbers resulted in 789 individual patients (49.7% Male; 64% aged 75+), of whom 187 had multiple plans during the audit period. The most recent plan for each patient was examined for content. Plans were most commonly completed by Registrars (539, 68.3%), and 99.7% of plans were signed. The majority of plans indicated orders for treatment limitation (608, 77.1%), and these patients were significantly older than patients with an order for full treatment (p=.001). Information on the decision making process was completed in 540 cases (68.4%). Of these, 63% had evidence that the patient/family had been involved in, or were informed of the decision. There was a significant association between limitation of treatment and evidence of family/patient involvement in the decision making process (p=.001). Forty-nine percent of patients with multiple plans had orders in the most recent plan for less-aggressive treatment, compared to the prior plan. A further 44% had no changes to treatment orders over consecutive plans.

The use of POLST forms in an acute care environment is dynamic and complex. Evidence of patient/family involvement in the decision making process should increase as local advance care planning programs progress.
New guidelines for sepsis care integrating palliative care and end of life care concepts
Authors: Kleinpell R
Published: May 2012

Sepsis is a worldwide healthcare condition that is responsible for a significant percentage of neonatal, paediatric and adult deaths. Improving the recognition of sepsis can help to improve early detection and treatment to ultimately improve outcomes for patients with sepsis. The Surviving Sepsis Guidelines are international guidelines that have been established to outline best practices for the management of sepsis. The new 2012 guidelines provide a number of updates including a focus on establishing goals of care and integration of palliative care and end of life care concepts. New recommendations include that goals of care and prognosis be discussed with patients and families. In addition, goals of care should be incorporated into treatment and end-of-life care planning, utilising palliative care principles. Goals of care should be addressed as early as feasible but no later than within 72 hours. This session will discuss the process of updating the guidelines, highlighting key features of the new guidelines with respect to the integration of palliative and end of life care concepts.
Defining end of life care in one of Australia's busiest hospitals.
Authors: Mitropoulos J. , Le B.
Published: May 2012

Despite evidence illustrating the importance and benefits of Advance Care Planning (ACP), and sustained efforts to promote its use and uptake, the use of documented ACP in patients presenting to hospital at or near end-of-life (EOL) remains low. The Royal Melbourne Hospital (RMH) has the largest number of admissions and separations of any other Australian hospital. Consecutive deaths occurring at the RMH from June 1st2011 (n=90) were retrospectively reviewed to assess the preparedness of patients and carers for end-of-life care, specifically looking at ACP documentation and Limitation of Medical Treatment (LMT) orders. In this population of patients, only 3 patients presenting to hospital, who went on to die during that admission, had a documented ACP. During the final admission, there was a high incidence of documented LMT orders, (present in 80% of deaths). However in 15.28% of such instances, the LMT order was enacted following a “Code Blue” and/or Medical Emergency Team call, which raises questions about timeliness of discussions with patients and carers about clinical decision-making and EOL issues. Further data to be presented includes time taken from admission to LMT order (mean 4.89 days), quality of dying after defined LMT orders and the rates of consultation with Palliative Care (41.11% of cases). The results of this study highlight the ongoing need to promote appropriate early ACP discussions to guide EOL decision-making. The results of this study are to inform the basis of a new hospital wide initiative to promote and guide clinician-led ACP discussions.

Treatment orders documented in each patient's most recent Resuscitation Plan

Number of patientsFull treatment181 (22.9%)Not for CPR but is for intubation25 (3.2%)Not for CPR or intubation (is for non invasive ventilation)154 (19.5%)Not for CPR, intubation or ventilation306 (38.8%)Palliative care123 (15.6%)
The implementation of advance care planning at Hawaii Pacific Health
Authors: Ashton M , Cantillo MRN
Published: May 2012

Hawaii has been identified as a state with very high end of life hospitalisation rates and associated costs. We have had a POLST law in effect since July 2009, but in spite of multiple educational forums we found low levels of awareness. We also found that our frontline staff did not have easy access to documents indicating patient wishes around end of life when they were provided to us, placing our patients at risk for not having their wishes followed. We created a program to address these needs. We adopted the Respecting Choices program and provided Advance Care Planning training to appropriate staff at each of our 4 hospitals. We also invited participation from long term care facilities that receive and send us patients. We also created online training modules for frontline clinicians to understand the program. At the same time, we worked to ensure that ACP documents are immediately available in our electronic medical record, so that as patients access care, we are able to reliably view their documents. HPH partnered with Allina Hospital to improve the electronic medical record and worked with the medical records to improve the ACP scanned documents process. In addition, we identified groups of patients (both at time of hospital discharge and outpatients) for whom a POLST is likely to be appropriate and we worked to increase the number of POLST orders that were created with them.
ACP for people with intellectual disabilities: the views of family members and care staff
Authors: Bellamy G , Gott M , Boyd M , Prebble K , Neil H
Published: May 2012

The evidence base to support the development of ACP processes for people with intellectual disabilities and their families is limited. There is a paucity of studies that have explored the most appropriate means of engaging this population in ACP discussions. Evidence from previous research would suggest that people with intellectual disabilities are at risk of both ‘under-treatment’ at the end of life, for example, through sub-optimum pain management, and ‘over-treatment’, for example overly-interventionist care. As a result the extent to which people with intellectual disabilities and their families want to engage in ACP, and the mechanisms by which this can be achieved, remains unclear, particularly within the New Zealand (NZ) context. IDEA services has over 800 community homes supporting around 5800 people with intellectual disabilities across NZ, of whom 24% are aged over 50 years resulting in an increase in the incidence and prevalence of conditions such as dementia. In this presentation, we report the preliminary findings from a qualitative interview study conducted with individuals including care staff from IDEA services, general practitioners and family care givers regarding their views about ACP focusing on the barriers to, and facilitators of ACP. We report on the views of participants in relation to: understandings of ACP, the importance of interpersonal relations and the role of advocacy. This study suggests the need to rethink the traditional autonomy focused framework of ACP and the need for broader initiatives that incorporate the views of significant others to achieve an individuals' end of life care wishes.