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What Are the Elements of Advance Care Planning and What Is the Evidence That Advance Care Planning Changes Patient Outcomes?
Introduction and Scope of the Problem
Patients and families facing a serious illness are confronted with multiple decisions about medical care. These decisions are high-stakes, are stressful for all involved, and have numerous downstream effects for patients, families, providers, and the health care system. Advance care planning (ACP) seeks to improve this decision-making process by preparing for these moments ahead of time. While ACP was initially developed to ensure that the patient’s voice was respected in case of future incapacity, it has expanded to include any decision making for future care. The future decision may be decades away (early ACP for healthy patients) or only weeks away (planning in the case of seriously ill patients).
ACP has been developed and studied for more than 30 years. In the past 10 years, the field has evolved significantly in defining ACP, clarifying the possible outcomes, and obtaining data on ACP’s impact. As the growing evidence has shown mixed outcomes, many clinicians have raised questions about where they should focus their ACP efforts. This chapter will review ACP’s definition and the data regarding early and late ACP and advance directives (AD). The chapter also discusses the evidence for ACP and methods for engaging in ACP with patients and families.
Advance Directives
Much of the early ACP work focused on the creation of an advance directive (AD). An AD is a document that has various meanings. It can represent a document that states a patient’s wishes (living will) and/or can name someone to be a patient’s decision maker in case of incapacitation (health care proxy or power of attorney for healthcare). These documents can also include desires about specific treatments and orders related to those preferences, such as physician or medical orders for life-sustaining treatments (POLST or MOLST) or do not intubate/do not resuscitate orders. Table 33.1 lists some of the many forms of advance directives available. The legal standing of the document differs from state to state.
Table 33.1
Key Advance Care Planning Documents
| Document | Description |
|---|---|
|
Allows a patient to specify wishes for future care. May also include a section to designate a proxy decision maker. |
|
Designates a surrogate decision maker. Does not typically specify wishes for care (though sometimes forms allow the patient to include certain preferences). |
| Physician (or medical) orders for life-sustaining treatment (POLST/MOLST) | Document containing physician orders regarding cardiopulmonary resuscitation, as well as medical interventions, including antibiotics and artificial nutrition and hydration. This document travels with a patient across care sites and is legally valid as an order in transit. |
| Code status (do not resuscitate/do not attempt resuscitation/do not intubate) | Order and/or document in a particular institution specifying whether or not to perform cardiopulmonary resuscitation in the event of a clinical decompensation. |
Early work in this area focused on how to increase AD completion. From 1996 to 2004, nursing home AD completion rates rose from 53% to 70%. A more recent study found that 33% of individuals over 65 years of age completed an AD. Other studies focused on improving surrogate and physician understanding of patient wishes. Such techniques included structured interviews, scenario-based advance directives, motivational counseling, and provider cues to discuss ACP. Although these studies showed improved surrogate–patient and provider–patient concordance regarding patient wishes, they did not show an impact on improving patient outcomes. ADs alone did not seem to have an impact on care because of conceptual issues (e.g., difficulty predicting future wishes, changing wishes, ability to adapt to previously undesired health states) and practical issues (e.g., discussions not held or not documented, documents not transferred between sites, or misunderstood because of the vagaries of the documents, or not followed).
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