Weekly Blogs
Young adults in ACP research Advance directive (AD) research has focused on elderly and/or terminally ill patients with little research addressing younger adults. Even then, most research regarding advance directives and the younger population has failed to identify specific behaviors related to ACP. While a handful of research studies have included both younger and older adults, far fewer studies have focused specifically on younger adults attending college. Fortunately, researchers are highlighting the importance and need for young adults attending college to engage in ACP. In 2016, research with patients and clinicians emphasized the value of beginning advance care planning conversations with healthy young adults. Several studies have identified the young adult college student population as ready and willing to participate in ACP with a lack of knowledge as the biggest barrier to their involvement. In the few ACP research studies that have been conducted with healthy young adults, the majority of participants cited lack of awareness, familiarity, and knowledge as the biggest reasons for not having previously participated in ACP. Many young adults specifically identified age and knowledge as the primary reasons for not having an AD. Multiple research studies have reported a positive result or experience when young adults are introduced to ACP through study participation, and many participants viewed ACP as important and sought more information. Other studies found that undergraduate college students who participated in ACP felt empowered, saw the ACP process as a positive experience, and believed the process facilitated end-of-life care conversations with family and friends. In one study, more than 50% of millennials (those born from 1981 to 1997) stated they have already had end-of-life care conversations with a family member, and 57% are willing or very willing to have such conversations. Current research has shown young adult college students (18-34 years of age) understand the value of and are interested in learning more about ACP. In addition, the majority of participants felt that all capable adults should engage in ACP.
ACP as a Public Health Issue Health behavior is influenced by many factors at various levels of society. The individual, interpersonal, institutional, community, and policy levels are impacted by economic, political, and social factors. Institute of Medicine (IOM) has identified ACP as a public health issue that could be addressed by the community as one part of the health care system. ACP research experts defined ACP as a progression of behaviors including conversations between individuals, surrogates, and medical practitioners as well as completion of an advance directive. ACP behaviors have been referred to as health behaviors by some researchers, while others have recommended addressing ACP as a health promotion activity to improve participation rates and normalize such conversations. ACP behaviors include articulating personal values, selecting a surrogate, discussing surrogate leeway in decision making, and informing others of the decisions in addition to completing ACP documents. In addition, the IOM endorsed ACP as a continuous lifelong behavior that should begin early with everyone including children who have the capacity to participate in making health care decisions.
Ethical Issues The medical community was not morally or ethically prepared to handle the modern challenges of the rapidly increasing number of scientific advancements and technological developments in medicine. While medical ethics have existed since the time of Hippocrates, the physician was seen as the only one with medical education, training, and experience, and the recommendations of the physician were not questioned, a practice often called paternalism. Although the Hippocratic Oath contained no mention of patient desires for medical treatment (Simon, 2014), the goal of medicine has always been to provide treatment in the best interests of the patient, and it was the physician who was responsible for the medical welfare of the patient (Beauchamp & Childress, 2013). Paternalism focused on established medical ethics principles of beneficence (to do good) and non-maleficence (to do no harm) without any discussion of autonomy (Simon, 2014). As autonomy developed in the Western world and values shifted toward personal responsibility and individuality, the concept of self-determination in medical decision-making became more important to society (Simon, 2014). Unethical research studies, both at home and abroad, along with prominent legal cases were now in the general public’s limelight. Discussions began to focus on informed consent and the patient’s right to accept, refuse, or withdraw medical treatment recommendations (Brown, 2003). Medical ethics principles now included beneficence, non-maleficence, respect for autonomy, and justice (Beauchamp & Childress, 2013; Gwyther, 2011). These principles were identified in the 1979 Belmont Report as the basic ethical principles upon which to interpret and answer difficult ethical questions such as those posed by advances and developments in science, medicine, and technology (U.S. Department of Health, Education, and Welfare [DHEW], 1979). The Belmont Report, by way of the 1974 National Research Act, resulted from the public disclosure of the U.S. sanctioned Department of Public Health Tuskegee Syphilis Study in which autonomy and informed consent were of little or no importance. Sadly, the right to self-determination and autonomous decision-making had already been highlighted in both the 1949 Nuremberg Code (U.S. Department of Health and Human Services [DHHS], 1949) and the 1964 Declaration of Helsinki (World Medical Association [WMA], 2018), yet never implemented in the Tuskegee Study.
Federal Legislation Federal legislation quickly followed the Cruzan decision. In 1990, the U.S. Congress passed the Patient Self-Determination Act (PSDA) as part of the Omnibus Budget Reconciliation Act. This bill mandated states to create advance directive laws and health care facilities participating in Medicare/Medicaid programs to provide written information about advance directives along with documenting whether or not the patient has any advance directives . The Uniform Health Care Decisions Act (UHCDA), drafted in 1993 by the National Conference of Commissioners on Uniform State Laws, consolidated the components of state advance directive laws including advance directives, signing requirements, surrogate or proxy designation, and organ/tissue donation. This act was not national legislation, but instead, the UHCDA served as a model for state laws, and many states have adopted the Act in its entirety or modified the Act for adoption .
ACP Reimagined Shortly after its introduction in the late 1960s, the written living will or AD became the accepted gold standard for expressing one’s own end-of-life wishes, and the Cruzan decision allowed surrogates to provide “clear and convincing evidence” of those wishes should a written AD not exist. Completing an AD was often considered a one-time event occurring after a terminal diagnosis or at the end of life. However, many have argued against the ability of ADs alone to achieve the treatment preferences and goals of care desired by the patient. To accomplish the patient’s preferences and goals, ADs rely on the completion of three specific steps: “(a) People must complete living wills [advance directives], (b) individuals must be able to express authentic and stable preferences in their living wills, and (c) surrogates must be able to understand those preferences well enough to predict the patient’s wishes accurately” (Fagerlin, Ditto, Hawkins, Schneider, & Smucker, 2002, p. 270). Swetz (2017) identified one criticism of ADs as inability of the “gold standard” written AD document to predict patient treatment wishes any better than discussions with physicians, patients, and surrogates that occurred before completion of the AD. Sabatino (2010) highlighted several issues with what he calls the legal transactional approach to ADs, which included low usage of legal documents, limited understanding of the documents, instability of decisions over time and health status, inability of a surrogate to correctly identify the patient’s wishes, and lack of physician knowledge regarding existence or location of such legal documents. Despite these challenges, Brown (2003) stated the majority of people, both healthy and sick, believe advance directives are important even though only about 1/3 actually complete written legal documentation. To address some of the concerns with ADs, practitioners and researchers have suggested a shift from the one-time advance directive document completion to a lifetime advance care planning (ACP) process. This iterative process incorporated several elements including communication between patient, physician, and surrogate regarding personal values, goals of care, treatment preferences and palliative care opportunities; surrogate decision making along with the leeway to make those decisions; and completion of advance directive documents.
Definition for Research While ACP consisted of common elements, no formal definition existed to guide clinical application, medical billing practices, research studies, intervention development, or legal and policy initiatives. Recently, a large panel of multidisciplinary international ACP experts were identified to develop a unifying definition. Through several rounds of using the Delphi method and multiple edits, the multidisciplinary panel reached consensus on an ACP definition statement which reads (Sudore et al., 2017): Consensus definition of advance care planning for adults Definition statement Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness. For many people, this process may include choosing and preparing another trusted person or persons to make medical decisions in the event the person can no longer make his or her own decisions (p. 826). The definition statement continued incorporating strategies to support adults in the advance care planning process such as on-going communication between patient, provider, and surrogate with a focus on health care goals, informed decision-making, identifying surrogate decision-makers, recording patient wishes, and saving the records where they can be located when needed (Sudore et al., 2017). Furthermore, some of the same panel members worked on an ACP definition with international consensus and support from the European Association for Palliative Care. This panel contained 109 ACP experts from Europe, Australia, and the United States. While the wording is a bit different, the central element is the same: “ACP is considered to be a process that includes the identification of values and defining goals and preferences for future medical treatment and care and discussion of these factors with the patient’s family and health-care providers” (Rietjens et al., 2017, p. e546). Other key elements in the international definition were regular review, documentation, selection of surrogates, and inclusion of all with decisional capacity (Rietjens et al., 2017). These two definitions clearly reflect the shift from AD completion to a multistep ACP process, will guide future research, and will identify universal outcomes to facilitate program improvements and generate replicable research studies.