The public's perspectives on advance directives: Implications for state legislative and regulatory policy

Abstract

Objectives

Determine the prevalence of advance directives (ADs) in Maryland and identify the barriers and enablers to their adoption, in order to guide the formulation of state legislative policy.

Methods

Cross-sectional survey administered over the telephone to a representative age-stratified random sample of 1195 Maryland adults.

Results

Approximately 34% (n = 401) of Maryland adults reported having an AD. Older adults (65+ years) were more likely than younger adults (18–64 years) to have ADs (p < 0.001); the proportional difference between those with and without ADs diminished as age increased. Two times as many Whites than Blacks reported having ADs (43–23%; p < 0.001). Of those who had an AD, the primary motivations for creating one was a personal medical condition or a diagnosis to one's self or a family/friend (41%). Those without ADs identified lack of familiarity with them (27%), being too young or healthy to need one (14%), or uncertainty of the process for adopting one (11%) as reasons for not having one.

Conclusions

Barriers to AD adoption appear amenable to policy interventions. Policies that seek to increase access and ensure ease of enrollment, combined with a targeted public health advocacy campaign, may help increase the prevalence of ADs.

Introduction

Advance directives (ADs) were created to ensure autonomy of patients who eventually become unable to make decisions for themselves [1], [2]. ADs are one of the important tools for end-of-life planning and include the living will and health care power of attorney [3], [4]. Research has shown that the benefits of ADs include improved quality at the end-of-life, fewer burdens on family and health care providers (HCPs), and a reduced need for life-sustaining treatment [2], [3], [4].

In the United States, because federal law generally defers to state law concerning ADs and surrogate decision-making [4], every state has statutory provisions for ADs. Originally enacted in 1991, the Maryland Health Care Decisions Act (as amended though 2007) not only outlines the processes for completing written ADs, but also describes key concepts and principles for HCPs and surrogate decision-makers to contemplate when making health care decisions for patients who cannot make their own decisions (http://www.marylandadvancedirectives.com/).

As state legislatures and the federal government are struggling to deal with health care reform, discussions have included ideas to bolster advance care planning, including incentives for physicians to discuss ADs and goals of care, periodically with patients to inform them about their options. National estimates are that, at best, 30% of Americans have expressed in writing their wishes for how they want to be cared for if they become seriously ill or are unable to communicate their choices for medical care [3].

Internationally, ADs have also entered the policy debate. In 2008, the European Science Foundation organized a workshop on developing a coordinated European perspective on ADs [5]. The meeting was in part spurred by the fact that citizens from the European Union (EU) are increasingly seeking health care outside their countries of origin. Several countries in the EU lack national legislation covering ADs. Research conducted in the U.S. may yield results that inform policy decisions in other countries.

In Maryland, legislation with the goal of increasing use of ADs has been frequently introduced [6]. Some bills have passed; however, many have not. Although no recent data exists on the prevalence of ADs, anecdotal reports are that the prevalence of ADs in Maryland remains low. Therefore, it seems that improved understanding of the public's usage and perceptions of ADs could help inform the development of legislation. Moreover, it is important to identify the public's perception of obstacles to the adoption or use of ADs.

In trying to develop and respond to public policy initiatives to help with AD adoption, we were surprised at the limited amount of research from diverse population-based samples that could help guide legislative policy. Existing research has primarily included fairly homogeneous samples, selected populations, particularly seniors, those residing in nursing home or extended care facilities, or those with terminal diseases [7], [8], [9], [10], [11], [12], [13]. Therefore, this descriptive study was initiated to understand better the public's perception of ADs, with a focus on identifying factors that could influence the policymaking process. The primary aims of this paper are to: (1) describe the prevalence of ADs in a diverse population-based sample of Maryland adults; (2) determine perceived causes, barriers, and enablers to their adoption; and (3) identify potential policy solutions to address these barriers. Although ADs have been used for several decision-making scenarios (e.g. psychiatric-related decisions), for this study, we explored them in the context of end-of-life care.