By Geronimo Jimenez, Research Associate, Centre for Population Health Sciences (CePHaS)
Advance care planning (ACP) refers to the ongoing discussions between patients, their family members and healthcare providers, in which they all reflect on the patient’s values and beliefs in order to make decisions about future healthcare goals and treatments, usually at the end of life. As such, ACP is a valuable tool for all ageing societies that face the challenge of providing high quality, cost effective and beneficial end-of-life care, which makes it especially relevant for Singapore, given its fast ageing population.
How it all started
In an effort to increase the number of ACPs conducted here, the Ministry of Health through the Agency for Integrated Care launched the national ACP programme in August of 2011. We sought to explore all the available research on ACP to derive lessons that may help improve the particular aspects of the local ACP initiative. Our team includes Associate Professor Josip Car from the Centre for Population Health Sciences (CePHaS) at LKCMedicine, Associate Professor of Economics Chan Kee Low and Assistant Professor of Psychology Andy Ho, from the School of Social Sciences of NTU, as well as other CePHaS members with backgrounds in end-of-life care research, bioethics and public health. With this multidisciplinary team we were able to investigate a variety of aspects such as policy and legislation development, institutional leadership, public education and health workforce training, implementation improvements, and ACP preferences, outcomes and costs.
Research by NTU-LKCMedicine team
We searched for published systematic reviews studying ACP as a unified concept or exploring any of its intrinsic related components, such as end-of-life decision-making, communication, implementation barriers and facilitators; ACP for different patient groups and settings; as well as attitudes towards ACP and studies about ACP effectiveness and resource use. We included 80 systematic reviews, covering over 1660 individual studies and reports. The majority of this research comes from the United States, Canada, Australia and the United Kingdom, with less than a third coming from Asian countries. While research on ACP may have started as early as 1994, the majority of the studies were published from 2014 and onwards.
Our studies uncovered valuable information about the different phases of ACP. There are key elements that influence the context for ACP, such as policy support and cultural sensitivity, and factors that act as barriers or facilitators at the implementation level, like lack of patient’s knowledge about ACP, healthcare providers’ communication skills, or lack of time and resources destined to ACP. Also, although differences in interventions impact different outcomes, ACP is generally associated with improved concordance between wishes and treatment received, between surrogate and patient’s wishes, and decreased use of unwanted life-sustaining treatments, just to name a few.
More importantly, we identified elements that were consistently associated with more successful ACP implementations. A “whole-system” strategic approach to ACP is essential for addressing the important structural elements (i.e. cultural factors and legal framework), while focusing on all the different components simultaneously (from organisation and funding, to training of healthcare providers) and concurrently targeting multiple stakeholders (patients, caregivers and providers). Specific features of successful ACP interventions include interactive information sessions with a knowledgeable person to discuss concerns, as opposed to just providing information using a brochure or a website. Repeated ACP conversations were also more effective, and implementing ACP across different settings is important to follow a patient’s end-of-life care journey, as they use multiple sites. Lastly, research calls for innovations for ACP, such as using information and communication technologies to deliver ACP information and education, improving storage and retrieval systems of ACP records, such as electronic advanced directives, and moving ACP from a hospital based format to a community-shared model.
Senior co-author Asst Prof Ho said, “I am heartened by the amount of international efforts that are invested in ACP research, yet current research is still limited in their ability to properly assess the original core outcomes of ACP. This underscores the imperative to build in a carefully planned evaluation component to all ACP programmes at the beginning stages of conceptualisation and development, enabling the collection of appropriate data to evaluating a proper set of outcomes.”
Former PhD student working at CePHaS and co-author Woan Shin Tan concurred, “Even though an evaluation should be context-based, understanding what has worked and what hasn't based on the literature, is a necessary first-step in designing and evaluating a complex programme such as the ACP. It was a great experience to contribute towards research on this meaningful initiative aimed at upholding one's autonomy when they are no longer able to do so.”
Co-author A/Prof Chan said, “What I find most interesting about ACP is that the research highlights a very meaningful aspect of medical care for people who are often in their final stages of their lives.”
With these studies, we aspired to provide important background information and evidence to reshape the current ACP model in Singapore, so that we can enjoy all the benefits that ACP may bring forth and improve the care of patients at the end of life.