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BackgroundAdvance care planning (ACP) encompasses both verbal and written communications expressing preferences for future health and personal care and helps prepare people for healthcare decision-making in times of medical crisis. Healthcare systems are increasingly promoting ACP as a way to inform medical decision-making, but it is not clear how public engagement in ACP activities is changing over time.MethodsRaw data from 3 independently conducted public polls on ACP engagement, in the same Canadian province, were analysed to assess whether participation in ACP activities changed over 6 years.ResultsStatistically significant increases were observed between 2007 and 2013 in: recognising the definition of ACP (54.8% to 80.3%, OR 3.37 (95% CI 2.68 to 4.24)), discussions about healthcare preferences with family (48.4% to 59.8%, OR 1.41 (95% CI 1.17 to 1.69)) and with healthcare providers (9.1% to 17.4%, OR 1.98 (95% CI 1.51 to 2.59)), written ACP plans (21% to 34.6%, OR 1.77 (95% CI 1.45 to 2.17)) and legal documentation (23.4% to 42.7%, OR 2.13 (95% CI 1.75 to 2.59)). These remained significant after adjusting for age, education and self-rated health status.ConclusionsACP engagement increased over time, although the overall frequency remains low in certain elements such as discussing ACP with healthcare providers. We discuss factors that may be responsible for the increase and provide suggestions for healthcare systems or other public bodies seeking to stimulate engagement in ACP.

Background The Advance Care Planning (ACP) and Goals of Care Designation (GCD) policy provides guidance to health care providers (HCP) in Alberta on how to communicate verbally and document patients’ and families’ values and wishes using a medical order. Aim To apply a knowledge translation framework, the Theoretical Domains Framework (TDF), to HCP perspectives on ACP and GCD in their clinical setting. Methods HCP (n = 542) including nurses (n = 331), doctors (n = 94) and allied HCP (n = 117) working in the areas of renal failure, cardiac failure, oncology and seniors care responded to a web-based survey that was developed through consultation and pilot testing. Leaders in each clinical area distributed the survey through their networks. Results Respondents agreed that ACP/GCD benefits patients with 85.43% rating benefit as 6 or 7 on the 7-point scale. The most common barrier was competing tasks and time constraints as 37.11% of HCP chose 6 or 7 when asked how much they impede ACP/GCD practice. Discussion When mapped to the TDF these results indicate that the category “beliefs about consequences” is a facilitator to policy implementation. The category “memory, attention and decision processes” may include the greatest barriers. As represented on the COM-B model (capability, opportunity, and motivation) HCP are high on motivation but face barriers in the area of capabilities. Conclusion Using a survey based on the TDF has allowed us to identify areas of priority for investment in behaviour change techniques to aid with uptake of ACP and GCD procedures.

Background Various survey design problems may introduce error and hinder the measurement of patient engagement with Advance Care Planning (ACP). The think aloud method allows for clarification of instructions, constructs, items, survey logic and flow. Aim To apply the use of “think aloud methods” to detect design issues in a new survey developed to measure patient engagement with ACP. Methods Patients with chronic diseases related to renal function (n = 4), cardiac function (n = 3), and cancer (n = 7), as well as healthier patients at family practice clinics (n = 7) were recruited to “think out loud” when completing a new survey evaluating patient engagement with ACP. Survey modes included hardcopy or electronic using an iPad. Think aloud interviews were audio-recorded and analysed using the constant comparison method. Three reviewers independently listened to the interviews, summarised findings and discussed discrepancies until consensus was achieved. Results Three rounds of interviews were needed until saturation for patient clarity was achieved. We found issues related to constructs, response options, instructions and language pertaining to patient engagement in ACP. Most patients were aware of ACP in the legal domain as opposed to the healthcare domain. Those with chronic diseases were likely to have an ACP agent. Discussion The think aloud method was useful in refining the survey instrument. It also revealed patient confusion about the documents used in Alberta to record ACP decisions while raising patient awareness. The findings will help establish the validity of the new survey. Conclusion This method was useful for instrument design while also providing information about how patients engage with ACP.

Background Advance Care Planning (ACP) is being implemented by healthcare systems around the world, but there is no consensus on how to evaluate these initiatives. Aim To identify gaps and/or redundancies in the current evaluative strategies used by healthcare systems and to help develop a framework for future ACP evaluation. Methods A systematic search of peer-reviewed and grey literature to March 2014 was conducted to answer: “What methods have healthcare systems used to evaluate implementation of ACP?” Using the PICOS model, articles describing the implementation and evaluation of health system level ACP initiatives were identified. Outcome measures were mapped onto a conceptual quality indicator framework based on the Institute of Medicine and Donabedian models of healthcare quality. Results Thirty-nine of 841 articles were included; most reported on single parts of a healthcare system only (e.g. continuing care). The most common outcome measures pertained to document completion; patient-, family-, or healthcare provider-reported outcomes were less commonly measured. The conceptual quality indicator framework identifying gaps and redundancies in measurement is presented as a potential foundation from which to develop a comprehensive ACP evaluation framework. Discussion Capturing the quality of care is lacking in current evaluative strategies, as is evaluation across multi-sector healthcare systems. Conclusion International dialogue is needed to achieve consensus on a comprehensive ACP evaluation framework. This review provides healthcare systems a comprehensive summary of measures used to evaluate ACP and the conceptual framework developed will help identify gaps or redundancies in evaluation of local ACP initiatives.

People with advanced chronic kidney disease (CKD) have high mortality; substantial physical, emotional and spiritual suffering; and tremendous end-of-life (EOL) care needs. However, their illness trajectories and needs differ from those with advanced cancer and current palliative care models do not meet these needs. Over the last two decades, much research and evidence on advance care planning (ACP) and EOL issues in CKD have accumulated. As a result, integrated renal palliative care services are slowly being developed internationally. Kidney Disease: Improving Global Outcomes (KDIGO), the independent, not-for-profit, organisation that conducts formal international guideline development in CKD, agrees that a comprehensive analysis of ACP and EOL/supportive care for CKD patients is timely and represents an area of great clinical need. KDIGO is therefore partnering with experts from around the world to hold the first consensus forum on renal supportive care. The goal is to (1) summarise the state of knowledge; (2) discuss what recommendations can be derived from the available knowledge; and (3) assess what needs to be undertaken to improve the evidence-base for ACP and EOL clinical management. The overall aim is to work towards global guidelines for the implementation of renal supportive care. This would help improve worldwide practice, referral, and overall access to ACP and palliative care services for patients with CKD. This session will highlight these recent advances in ACP and EOL care and will suggest how new knowledge may be integrated into care for patients with advanced CKD.