Effects of Advance Care Planning on Patient Empowerment, Patient Assessment of Care and Healthcare Utilization in Older Patients With Multimorbidity: a Randomized Pilot Study

A recent study into the patient perspective of patients with multiple chronic conditions in the Netherlands underlines the strain multimorbidity can put on people. Conducting semi-structured, in-depth interviews it was established that besides the burden of disease itself, patients struggled with managing the logistics such as regular hospital visits. Another conclusion was that most patients would appreciate more coordination from and communication with their care providers. This call for better coordination of needs and preferences ties into the concept of Advance Care Planning (ACP). ACP is a structured process of communication in which patients and physicians discuss and, if applicable, document health preferences and goals of patients regarding their last phase in life. Most ACP studies have been performed amongst older, terminally ill patients with the main aim of establishing patients' preferences before they lose capacity. We are interested in potential of ACP to increase patient empowerment in a population of high-need competent patients with multimorbidity, who are not necessarily in their last phase of life.

When taking a closer look at healthcare expenditure, the distribution among the population requiring care is skewed. In the Netherlands, the top-1% most cost incurring patients are responsible for 24% of healthcare expenditure and the top-10% accounts for 68%. These numbers are in line with international data. Public healthcare expenditure has been rapidly increasing over the last decades, compromising the economic sustainability of healthcare systems around the world. In the Netherlands, healthcare expenditure was 40.3 billion euro (10,35% GDP) in 1998 and has risen to 96.1 billion euro (13,79% GDP) in 2016. The patients that account for this cost-concentration have become an increasing target for care management. Studies have shown these High-Need High-Cost patients receive unnecessary or ineffective care with a recent study estimating preventable spending at 10%. Reducing such care would not only reduce cost but has the potential to improve quality of care, patient assessment of care and their quality of life.

The High-Need High-Cost patient population is very heterogeneous, yet one common denominator explaining high cost is the high prevalence of multiple chronic conditions. Both overtreatment and conflicting treatment are legitimate concerns within this population. As multimorbidity and frailty increase with age, the older patient with multimorbidity is especially at risk. Targeted care programmes have been developed under the assumption that better coordination will lead to a reduction in healthcare utilization. But although care might be identified as preventable or inefficient from a medical point of view, this is not necessarily the case from a patient perspective. We are interested how patients experience such care and thereby if better coordination would indeed lead to a reduction in utilization.

In the United States, the Patient Self Determination Act (1991) embodied the use of advance directives to promote adequate communication. An advance directive (increasingly being replaced by the term advance decision) must relate to a refusal of specific medical treatment and can specify circumstances. It will come into effect when the individual has lost capacity to give or refuse consent to treatment. Careful assessment of the validity and applicability of an advance decision is essential before it is used in clinical practice. Valid advance decisions, which are refusals of treatment, are legally binding. However, studies demonstrated important limitations of advance directives such as the limited use of advance directives despite many promotional efforts and the absence of positive effects on the quality of care, quality of life (QOL) or satisfaction of patients and relatives. From the mid-nineties, advance directives evolved to ACP, a more comprehensive approach where filling in an advance directive or decision is only one part of a process of wider communication.

ACP is a formalized process of communication between patients, relatives and professional caregivers. It has been defined as "a voluntary process of discussion and review enabling individuals to express, and, if they wish, record views, values and specific treatment choices to inform their future care". ACP promotes the documentation of patients' preferences in their medical file, the communication of these preferences to family and friends, the periodic review of preferences as circumstances change and the nomination of a health care proxy. Modern ACP programmes aim at informing and empowering patients to express their preferences about their current and future treatment.