Ethics and advance care planning in a culturally diverse society

Emerging international research suggests that in multicultural countries, such as Australia and the United States, there are significant disparities in end-of-life care planning and decision making by people of minority ethnic backgrounds compared with members of mainstream English-speaking background populations. Despite a growing interest in the profound influence of culture and ethnicity on patient choices in end-of-life care, and the limited uptake of advance care plans and advance directives by ethnic minority groups in mainstream health care contexts, there has been curiously little attention given to cross-cultural considerations in advance care planning and end-of-life care. Also overlooked are the possible implications of cross-cultural considerations for nurses, policy makers, and others at the forefront of planning and providing end-of-life care to people of diverse cultural and language backgrounds. An important aim of this article is to redress this oversight.

Advance care planning for older people in Australia presenting to the emergency department from the community or residential aged care facilities

The purpose of this retrospective, cross-sectional study was to determine the prevalence of advance care planning (ACP) among older people presenting to an Emergency Department (ED) from the community or a residential aged care facility. The study sample comprised 300 older people (aged 65+ years) presenting to three Victorian EDs in 2011. A total of 150 patients transferred from residential aged care to ED were randomly selected and then matched to 150 people who lived in the community and attended the ED by age, gender, reason for ED attendance and triage category on arrival. Overall prevalence of ACP was 13.3% (n = 40/300); over one-quarter (26.6%, n = 40/150) of those presenting to the ED from residential aged care had a documented Advance Care Plan, compared to none (0%, n = 0/150) of the people from the community. There were no significant differences in the median ED length of stay, number of investigations and interventions undertaken in ED, time seen by a doctor or rate of hospital admission for those with an Advance Care Plan compared to those without. Those with a comorbidity of cerebrovascular disease or dementia and those assessed with impaired brain function were more likely to have a documented Advance Care Plan on arrival at ED. Length of hospital stay was shorter for those with an Advance Care Plan [median (IQR) = 3 days (2–6) vs. 6 days (2–10), P = 0.027] and readmission lower (0% vs. 13.7%). In conclusion, older people from the community transferred to ED were unlikely to have a documented Advance Care Plan. Those from residential aged care who were cognitively impaired more frequently had an Advance Care Plan. In the ED, decisions of care did not appear to be influenced by the presence or absence of Advance Care Plans, but length of hospital admission was shorter for those with an Advance Care Plan.

Teaching general practitioners and doctors-in-training to discuss advance care planning : evaluation of a brief multimodality education programme

To develop and evaluate an interactive advance care planning (ACP) educational programme for general practitioners and doctors-in-training.

Uptake of a newly implemented advance care planning program in a dementia diagnostic service

BACKGROUND: advance care planning (ACP) provides a framework for discussion and documentation of future care preferences when a person loses cognitive capacity. It can assist people in the early stages of dementia to document their preferences for care at later stages of the illness. METHOD: a three-stage project introduced ACP to clients with mild cognitive impairment (MCI) or recently diagnosed dementia and their families through a specialist memory clinic. Over 8 months, all English-speaking clients (n = 97) and carers (n = 92) were mailed a survey assessing completed documentation for future care; understanding of the principles of ACP and willingness to get further information about ACP (Stage 1). Participants wanting more information were invited to a seminar introducing the ACP program and service (Stage 2). Participants wanting to complete ACP documentation could make an appointment with the ACP clinicians (Stage 3). RESULTS: forty-eight (52.2%) carers and 34 clients (35.1%) responded to the survey. Most clients (62.1%) and carers (79.1%) expressed interest in ACP, and 78.6% of clients and 63.6% of carers believed that clients should be involved in their future medical decisions. Nine clients (26.5%; diagnoses: MCI = 5; AD = 3; mixed dementia = 1) and 9 carers (18.8%) attended the seminars, and 2/48 (4%) carers and 3/34 (8.8%) clients (diagnoses: MCI = 2; AD = 1) completed ACP. CONCLUSION: despite initial interest, ACP completion was low. The reasons for this need to be determined. Approaches that may better meet the needs of people newly diagnosed with MCI and dementia are discussed.

End of life care - the importance of advance care planning

Background: Communication about end of life care may involve difficult conversations for patients, family members and health professionals. However, a lack of understanding of a person's wishes about their future care may result in a loss of dignity for the person, and additional distress for their family members and health professionals and burden to the healthcare system. Objective: This article discusses the barriers to advance care planning and provides some guidance for the general practitioner in undertaking advance care planning with patients and their families. Tips for initiating end of life discussions with patients and families utilising the 'PREPARED' acronym, and ensuring appropriate care delivery are included. Discussion: Involving patients and their family members in advance care planning may be challenging and time consuming for GPs. However, there are a number of resources to support this activity in relation to training, communication support and Medicare item funding.

Advance care planning in nephrology care

On completion of this continuing professional development (CPD) activity, participants will be able to:
• describe advanced care planning and its relationship to person-centred care
• identify who is responsible for initiating advance care planning discussions in their nephrology department
• identify the benefits of advanced care planning• recall conversation triggers for raising the topic of advanced care planning.

Mixed-initiative decision support for care planning based on clinical practice guidelines

Care Plan On-Line (CPOL) is an intranet based system that supports a “Coordinated Care” model for chronic/complex disease management. CPOL combines provision of solicited and unsolicited advice features based on integration of the electronic medical record (EMR) with its decision support logic. The objective is to support General Practitioners (GPs) in formulating a 12-month care plan of services such that: (a) the plan is proactive and patient-centered; (b) the GP is kept in awareness of project- and diseasespecific clinical practice guidelines; and (c) the support integrates with GP workflow in a natural fashion. A key feature of our approach is to blur the distinction of EMR and decision support by presenting guidelines in layers with the top-most being a problem-oriented presentation of patient status, progressing on through to patient-independent supporting evidence. In conjunction with a degree of automated inclusion of care planning services, the system demonstrates mixed user and software initiative. We describe the CPOL deployment setting, the challenges of guideline-based clinical decision support, our approach to guideline delivery, and the CPOL architecture.

Automated attention flags in chronic disease care planning

Objectives: To assess the value of computerised decision support in the management of chronic respiratory disease by comparing agreement between three respiratory specialists, general practitioners (care coordinators), and decision support software.
Methods: Care guidelines for two chronic obstructive pulmonary disease projects of the SA HealthPlus Coordinated Care Trial were formulated. Decision support software, Care Plan On-Line (CPOL), was created to represent the intent of these guidelines via automated attention flags to appear in patients' electronic medical records. For a random sample of 20 patients with care plans, decisions about the use of nine additional services (eg,.smoking cessation, pneumococcal vaccination) were compared between the respiratory specialists, the patients' GPs and the CPOL attention flags.
Results: Agreement among the specialists was at the lower end of moderate (intraclass correlation coefficient [ICC], 0.48; 95% CI, 0.39-0.56), with a 20% rate of contradictory decisions. Agreement with recommendations of specialists was moderate to poor for GPs (le, 0.49; 95% CI, 0.33-0.66) and moderate to good for CPOL (K, 0.72; 95% CI, 0.55-0.90). CPOL agreement with GPs was moderate to poor (le, 0.41; 95% CI, 0.24-0.58). GPs were less likely than specialists or CPOL to decide in favour of an additional service (P< 0.001). CPOL was 87% accurate as an indicator of specialist decisions. It gave a 16% false-positive rate according to specialist decisions, and flagged 61% of decisions where GPs said No and specialists said Yes.
Conclusions: Automated decision support may provide GPs with improved access to the intent of guidelines; however, further investigation is required.

A model driven approach to care planning systems for consumer engagement in chronic disease management

This work demonstrates a model-driven approach to the development of care plan systems, amenable to: (a) a flexible and extensible definition of care plan scope; and (b) deployment of care plan viewing and tracking functionality to a wide range of physical computing devices. The approach utilises a care plan domain model from which guideline implementers formulate care plan templates aligning to specific clinical guidelines. A clinical end user would subsequently constrain that template (e.g., selecting a subset of available activities and specific targets) to create a care plan instance for an individual patient. An XML care plan visualisation definition created using the Marama tool is transformed to OpenLaszlo script from which Shockwave Flash objects can be compiled, creating Flash applications that run on a variety of hardware for both clinical and patient users. The approach is illustrated with respect to an overweight and obesity guideline.

End-of-life care in a rehabilitation centre for older people in Australia

Aim
To investigate processes at the end of life for patients who died in a subacute evaluation and management facility for older people.

Methods
A retrospective chart audit for patients (n = 55) who died in the previous 2 years was undertaken, recording a number of significant variables.


Results
Despite diagnosis of comorbid medical conditions, most participants were admitted for improved functioning or assessment for alternative accommodation. Consistent with this focus, the key contact person was most often an allied health team member. Not For Resuscitation order and/or power of attorney documents on admission were uncommon (<30%) as were referrals to palliative care specialist staff (13%), although an end-of-life discussion was recorded (90%) and often included as a new goal of care (71%).

Conclusion
Factors likely to improve end-of-life care include advance care planning, earlier recognition of short prognosis and staff education.

Is client-centred care planning for chronic disease sustainable? Experience from rural South Australia

This qualitative evaluation of a chronic disease self-management project in rural South Australia considers the sustainability of client-centred care planning under current organisational and funding arrangements. The study involved consultation with a range of five stakeholder types over two stages (40 in the beginning stage and 39 in the middle stage) about their satisfaction with the care planning and self-management approach used in the project. All stakeholder types valued the client-centred approach because they perceived that clients were better able to accept and deal with the long-term management of their condition. However, this required that care planning should deal with a wider range of issues than just medical management, and so it took longer, which raised its sustainability in general practice under the current funding through the national health insurance programme (Medicare). The study concludes that sustainability may be addressed through further research into the role of and funding for peer-led self-management groups and the employment of care planners in organisational settings that are conducive to a client-centred approach.

The influence of medical enduring power of attorney and advance directives on decision making by Australian intensive care doctors

OBJECTIVE: Despite government encouragement for patients to make advance plans for medical treatment, and the increasing numbers of patients who have done this, there is little research that examines how doctors regard these plans.
DESIGN: We surveyed Australian intensive care doctors, using a hypothetical clinical scenario, to evaluate how potential end-of-life treatment decisions might be influenced by advance planning - the appointment of a medical enduring power of attorney (MEPA) or an advance care plan (ACP). Using open-ended questions we sought to explore the reasoning behind the doctors' decisions.
RESULTS: 275 surveys were returned (18.3% response rate). We found that opinions expressed by an MEPA and ACP have some influence on treatment decisions, but that intensive care doctors had major reservations. Most did not follow the request for palliation made by the MEPA in the hypothetical scenario.
CONCLUSIONS: Many intensive care doctors believe end-of-life decisions remain medical decisions, and MEPAs and ACPs need only be respected when they accord with the doctor's treatment decision. This study suggests a need for further education of doctors, particularly those working in intensive care, who are responsible for initiating and maintaining life support treatment.

A longitudinal cohort study evaluating the impact of a geriatrician-led residential care out-reach service on acute health care utilisation

Background: Over the last decade, high demand for acute health care services by long-term residents of residential care facilities (RCF) has stimulated interest in exploring alternative models of care. The Residential Care Intervention Program in the Elderly (RECIPE) service provides expert outreach services to RCFs residents, interventions include: comprehensive care planning, management of intercurrent illness and rapid access to acute care substitution services.Objective: To evaluate whether the RECIPE service decreased acute health care utilisation.Design: A retrospective cohort study using interrupted time series analysis to analyse change in acute healthcare utilisation before and after enrolment.Setting: A 300 bed metropolitan teaching hospital in Australia and 73 RCF within its catchment.Subjects: There were 1327 patients enrolled in the service with a median age 84 years, 61% were female. Methods: Data was collected prospectively on all enrolled patients from 2004 to 2011 and linked to the acute health service administrative dataset. Primary outcomes change in admission rates, length of stay and beddays per quarter.Results: In the two years prior to enrolment the mean number of acute care admissions per patient per year was 3.03 (SD 2.9) versus post 2.4 (SD 3.3), the service reducing admissions by 0.13 admissions per patient per quarter (p=0.046). Prior to enrolment the mean length of stay was 8.6 (SD 11.0) versus post 3.5 (SD 5.0), a reduction of 1.5 days per patient per quarter (p=0.003). Conclusions:This study suggests that an outreach service comprising a geriatrician-led multidisciplinary team can reduce acute hospital utilisation rates.

Fuzzy logic for decision support in chronic care

Computerized clinical guidelines can provide significant benefits in terms of health outcomes and costs, however, their effective computer implementation presents significant problems. Vagueness and ambiguity inherent in natural language (textual) clinical guidelines makes them problematic for formulating automated alerts or advice. Fuzzy logic allows us to formalize the treatment of vagueness in a decision support architecture. In care plan on-line (CPOL), an intranet-based chronic disease care planning system for general practitioners (GPs) in use in South Australia, we formally treat fuzziness in interpretation of quantitative data, formulation of recommendations and unequal importance of clinical indicators. We use expert judgment on cases, as well as direct estimates by experts, to optimize aggregation operators and treat heterogeneous combinations of conjunction and disjunction that are present in the natural language decision rules formulated by specialist teams.