People are living longer. In 2009, there were 39.6 million Americans age 65 and older (12.9% of the population). This number is expected to grow to 72.1 million by 2030, representing 19% of the U.S. population (Administration on Aging [AOA], 2013a). Numerous older adults have at least one chronic condition or illness; many have multiple conditions (AOA, 2013b).
Despite aging and health issues, the majority of American adults do not have Advance Health Care Directives (AHCDs). The Society for Risk Analysis found only 18% of adults had living wills, and only 30% had healthcare proxies (Greenberg, Weiner, & Greenberg, 2009). Pollack, Morhaim, and Williams (2010) found that although the majority of adults want their end-of-life wishes respected, only about one third have completed AHCDs. For adults who have completed AHCDs, only around 15% have sufficient advance directives reflected in their medical records (Agency for Healthcare Research and Quality, 2011; Alfonso, 2009).
Despite the growing need for advance care planning, many healthcare providers (HCPs) lack the education needed to provide teaching on advance directives (Duke, Thompson, & Hastie, 2007; Thelen, 2005; Zhou, Stoltzfus, Houldin, Parks, & Swan, 2010). When a patient's health status worsens, HCPs often find themselves discussing do-not-resuscitate (DNR) orders and other end-of-life care with the patient and/or family. Advance directive information needs to be provided prior to the deterioration of the patient and ideally before hospitalization. Patients and families need to understand AHCDs to make informed decisions about end-of-life wishes.
HISTORY OF ADVANCE DIRECTIVES
In 1967, members of the Society for Euthanasia created the first Living Will. The Living Will was developed to prevent or stop extraordinary measures that would prolong life and provided patients (even those incapable of providing consent), the legal right to die when provisions are in place. Since the first living will was created, legislation such as the Natural Death Act of 1976 was passed in California to preserve a person's privacy and dignity by having the right to enact an AHCD (Orbon, 1976). In 1984, California became the first state in which a Durable Power of Attorney was recognized for healthcare. In 1990, the national Patient Self-Determination Act (PSDA) was enacted that required competent adults admitted to a healthcare facility to receive in writing their right to accept or refuse medical treatment and the right to use an AHCD (American Bar Association, 2014). Twenty years later, researchers found this legislation has fallen short in making any significant impact on HCPs or consumers (Duke, Yarbrough, & Pang, 2009).
Why don't more people have AHCDs? An obvious reason is people are reluctant to discuss their mortality. Hospital admission, where AHCDs most often are presented, is not an optimum time to discuss end-of-life wishes. Furthermore, hospitalized patients report they don't understand advance directives, and many do not have AHCDs because they trust their loved ones to make the best decisions for them. However, they do not discuss their wishes with their family (Johnson, Zhao, Newby, Granger, & Granger, 2012). Researchers also have found people want to learn about advance directives from their HCPs-physicians and nurses, not lawyers, clergy, or over the internet (Matsui, 2010; Pollack et al., 2010).
Despite the requirements of law, most HCPs do not understand advance directives, the PSDA, and state laws, or provide adequate education despite the fact they face increasing exposure and challenges on how to handle patients' end-of-life issues (Croke & Daguro, 2005; Jezewski & Feng, 2007; Zhou et al., 2010). Most providers simply ask patients on admission if they have an advance directive or want information about AHCDs.
When patients are provided with information, they often do not understand the purpose and implications of an AHCD (Guo et al., 2010). Medical interventions are perceived by patients as an absolute good, without the possibility of failure; thus, patients do not foresee the need for AHCDs. Studies also have shown that nurses give medical treatments to patients, even though doing so is contrary to patients' advance directives or wishes (Dobbins, 2007; Larochelle, Rodriguez, Arnold, & Barnato, 2009; Scherer, Jezewski, Graves, Wu, & Bu, 2006; Thelen, 2005). Patients not only have the fundamental right to determine their end-of-life wishes but the legal and ethical right to do so (Croke & Daguro, 2005; Johnson et al., 2012).
Professional literature reveals a definite lack of AHCD education provided to nurses and patients, and that this lack of education directly affects the end-of-life care patients receive (Matsui, 2010; Meeussen et al., 2010). Duke et al. (2009) found "the existence of a written AHCD has not ensured that a patient's desires and intent were honored by family members, healthcare personnel, a hospital, or even the courts" (p. 119). Furthermore, it is vital to understand the education being provided to patients about AHCDs, the setting education occurs in, and the qualifications of who is providing this education (Duke et al., 2009). Winter, Parks, and Diamond (2010) concluded that patients' advanced care documents often are ineffective because patients' wishes change as their conditions change, living will scenarios often are not reflective of the true life circumstances, problems exist with AHCD training, and physicians are reluctant to provide patients with prognoses.
Research indicates a critical need for nurses to receive AHCD education to increase their confidence, effectively educate, and advocate for patients' end-of-life wishes, as well as avoid liability claims for malpractice. Nurses want to address this issue but do not consistently offer AHCD information (Johnson et al., 2012; Zhou et al., 2010). It is imperative that nurses assist and advocate for a comprehensive decision-making process for patients and their families.
EXPLORING AHCD DEFICENCIES
A problem with AHCD education was recognized at a 325-bed regional acute care hospital. Admitting-office personnel are responsible to provide patients with an AHCD information packet but not trained to answer AHCD questions; if the patient does have a question, he or she is told to ask a nurse after admission. However, nurses expressed not fully understanding AHCDs, feeling incompetent to educate patients, nor did they believe AHCD education was an important part of their role.
To develop an effective AHCD education program, nurses' current knowledge was assessed using the Knowledge-Attitudinal-Experimental Survey on Advance Directives (KAESAD) (Scherer & Jezewski, 2006). The KAESAD measures nurses' knowledge, attitudes, confidence, and experience regarding AHCD. Three sections of the KAESAD were used to assess general knowledge of AHCD, of the PSDA, and of state laws. A total of 30 statements with "true," "false," and "don't know" response options were utilized (total score range 0-30). The following demographic information was assessed: if they/anyone in their family have an AHCD; hours of AHCD education received during their formal education; if they had received formal instruction on AHCDs at this institution, and if yes, how was it presented to them; and how advance directives are formally communicated to the healthcare team. A final open-ended question asked, "What do you feel nurses need most to increase their ability to assist patients with advanced directives?" Institutional Review Board (IRB) approval was obtained from the hospital, and nurses were given a Survey Participation letter explaining the study, that participation was voluntarily, and responses would be kept anonymous.
A total of 49 full-time nurses completed the survey. Their average age was 39.8 years with number of years in practice 12.4. The majority was female, Caucasian, of Catholic religion, and held a Diploma or Associate degree in nursing. Hours received on AHCD in their formal education was 1.42; institutional instruction 0.72 hours. Thirty percent (30%) of the nurses reported having an AHCD and 57%, knowledge of a family member having an AHCD.
Responses on the KAESAD revealed the nurses were quite deficient in knowledge about AHCDs in general, the PSDA, and state laws (see Table 1). There was a positive correlation between a nurse's age and higher total AHCD scores (Pearson r correlation .431, p = .010) and PSDA scores (r = .379, p = .025), suggesting older nurses may have more knowledge as a result of learning on the job, nursing experience, and/or life experience. However, there was no correlation between number of hours nurses reported receiving AHCD education and their scores on the KAESAD. Lack of correlation could represent no actual connection between education and knowledge, or the statistical analysis could have been affected by low KAESAD scores and low hours of education.
Sixteen participants responded to the final open-ended question. Nine nurses specifically and repeatedly addressed the need for more AHCD education in their comments, including add AHCD education to new nurse orientation, periodically give education to all nursing staff, and give clear information about legalities of AHCDs.
The nurses' comments also reflected issues beyond the need for education. One wrote, "There should be someone in the hospital to handle AHCD issues who has more time than the bedside RN to tell the patient/family all about advance directives." Whether this suggestion comes from time constraints, a belief that nurses don't have the time or feel that this is not their responsibility, or a concern that they do not possess adequate knowledge to engage with the patients effectively is unknown. Regardless of the motive, the suggestion reflects reticence to engage in AHCD discussions. A related comment said nurses need to "feel comfortable" talking about AHCDs. The nurse did not explain what "feeling comfortable" means or why he or she did not feel comfortable. The quantitative data from the survey confirmed knowledge about AHCDs is deficient. However, knowledge and comfort do not necessarily go hand in hand. Program evaluation following AHCD training would need to explore whether confidence and comfort increased as a result of training.
AHCD IN-SERVICE EDUCATION
Responses to the survey were used to develop an AHCD program. The goal of the educational program was for nurses to increase their knowledge of AHCD and be able to demonstrate effective AHCD education.
KAESAD questions that received a score of 75% or less correct were included into the educational program with strategies to reinforce the knowledge. For example, 47.7% of participants answered incorrectly that both Living Wills and Health Care Power of Attorney always have to be notarized (not true); 93.6% of participants answered incorrectly that if an adult patient lacks decision-making capacity and does not have a proxy, HCPs must seek legal permission to stop life-sustaining treatment.
The Knowles's Andragogical Model identifies six assumptions about adult learners: (1) they need to know why learning should occur, (2) they need to be responsible for their learning, (3) the learners' previous experiences are the foundation for learning activities, (4) the learners must be ready to learn, (5) adult learners have a problem-centered orientation to learning, and (6) internal motivators to learn are more influential than external motivators (Knowles, Holton, & Swanson, 2005; Merriam, Caffarella, & Baumgartner, 2007). Assisting nurses to understand why they should gain AHCD knowledge is essential to help form a connection between information and why it is being learned. This connection will lead to the motivation to learn, a sense of purpose in the education, and help encourage a sense of obligation to professional values (Knowles et al., 2005).
Adult learners are aware of what they need to know based on their tasks, problems, and experiences-the adult learners' textbook-thus, education classes need to be geared toward applications to life and individual readiness to learn. The third of Knowles' assumptions, the learner's previous experiences are the foundation for learning activities, suggests it is important to know nurses' previous experience with AHCD and incorporate prior learning into any educational plan. Finally, for learning to take place it is important to provide opportunity for learners to practice and refine what they learned (Knowles et al., 2005).
A 2-hour in-service education program was designed, following Knowles' model and using information from the AHCD study of hospital nurses. Table 2 outlines the program plan that included exploring previous AHCD experiences; assessing current knowledge; identifying knowledge deficits; learning new information; applying learning through role playing; and ongoing open discussion. Recognizing adults are self-directed is important so the in-service engages participants and encourages mutual inquiry. Another consideration is that each participant enters the program with his or her own style, pace of learning, life experiences, and expectations for the program, so the in-service allows for individual differences in responses and engagement.
Content taught about AHCDs is described in the sidebar Advance Health Care Directives Terminology. In addition to explaining terminology and state laws, the Aging With Dignity Five Wishes Program (2014) is taught to participants. Easily accessible resources for use in ongoing practice is provided to the nurses (Table 3). A patient teaching booklet was developed by the author for nurses to use in role playing and later with patients and families. The lecture slides and patient booklet can be found online at http://links.lww.com/NCF-JCN/A36 and http://links.lww.com/NCF-JCN/A37.
MAKING EDUCATION WORK
A critical issue to implementing AHCD education is obtaining permission, support, and resources. For example, demonstrating how the AHCD educational program aligns with the mission of the hospital and quality measures for reimbursement is necessary. Engaging stakeholders such as hospital administration, nursing leaders, staff development personnel, palliative care nurses, hospice staff, and clergy is important. Determining whether AHCD education will be mandatory or voluntary is a vital decision to be made by hospital leadership, as the largest cost will be paying salaries to attend the program. Another needed resource is current AHCD documents in use at the hospital. Other course materials can be provided by the hospital and the staff development office, with the cost figured into the staff development budget.
Vital changes took place at the hospital following completion of the AHCD study. In addition to hospital administration and the IRB becoming aware of the value of nursing research, hospital leadership learned of the lack of AHCD knowledge and the need to address this problem. Nurses in patient care became aware of their knowledge deficit, which sparked a desire to receive AHCD education. At this writing, two acute care hospitals have been provided with the AHCD in-service education plans and are working on executing the program. A huge obstacle to implementation is staffing that facilitates nurses attending an in-service during regularly scheduled work hours, and/or budget to allow paid attendance outside of regular schedules.
CONCLUSION
It is vital to recognize and address problems associated with AHCD so nurses can provide competent and compassionate patient care. Nurses are patient advocates and need to be able to educate patients and families about advance directives. If nurses lack the education to effectively educate, how are patients going to make desired decisions about their wishes at the end of life? This study provided the avenue to pursue a vital problem at one local hospital and develop an educational program. However, there are many issues surrounding AHCD that an educational program alone may not address. Future research needs to examine issues such as moral distress, healthcare team relationships, and when is the best time to offer patient and family teaching and complete an advance directive.
Advance Health Care Directives Terminology
Living Will (medical directive, declaration, directive to physicians): A written instruction spelling out treatments you want or don't want if you are unable to speak for yourself. A living will says in effect, "Whoever is deciding, please follow these instructions." On its own, a living will is limited-it usually applies only to end-of-life decisions, and standard instructions tend to be general.
Healthcare Power of Attorney (durable power of attorney, healthcare proxy, medical power of attorney): A document that appoints someone of your choosing (over age 18) to be your authorized agent (attorney-in-fact, proxy). You can give your agent as much or as little authority as you wish to make healthcare decisions, which are not limited to end-of-life decisions. Appointing an agent provides someone with authority to weigh all the facts and circumstances and interpret your wishes accordingly. A healthcare power of attorney is broader and more flexible than the living will.
U.S. Living Will Registryhttp://uslivingwillregistry.com: Electronically stores advance directives and makes available to healthcare providers 24 hours/day via secure Internet or telephone-facsimile. The Registry stores all types of advance directives, as well as organ donor information.
Comprehensive Advance Health Care Directive: Combines the living will and the healthcare power of attorney into one document. Other directions may be included such as organ donation or where and how you prefer to be cared for. Because it is more comprehensive and more flexible, this is the preferred legal tool.
Patient Self-Determination Act (PSDA): A federal act enacted in 1990 that requires competent adults be provided in writing their right to accept or refuse medical treatment and right to use Advance Health Care Directive.
Advance Health Care Directive (AHCD, advance directive): Includes legal and/or lay documents that spell out care people wish to receive or not receive should they become unable to make or communicate their desires for healthcare. As defined by the PSDA, advance directives are "written instructions, such as a living will or durable power of attorney for health care, that would be recognized under state law as proof of the patient's intent and desires should the individual become incapacitated" (Duke et al., 2009, p. 116).
Aging With Dignity Five Wisheshttp://www.agingwithdignity.org/five-wishes.php: Available in print and online, Five Wishes includes in-depth AHCD information for individuals and families, along with forms that meet advance directive legal requirements in 42 U.S. states. Five Wishes lets family and healthcare providers know who is designated as healthcare power of attorney; wishes about care, comfort, and end-of-life treatment; and includes final communications to loved ones. At this writing, Five Wishes is distributed by 35,000 organizations with more than 18 million copies in circulation.
Do Not Resuscitate (DNR): "A physician's written order instructing healthcare providers not to attempt cardiopulmonary resuscitation (CPR) in case of cardiac or respiratory arrest" (National Hospice and Palliative Care Organization, 2008, p. 20).
Do Not Intubate (DNI): A physician's written order instructing providers to attempt CPR in case of cardiac or respiratory arrest and provide supportive therapy but to not intubate the patient for mechanical ventilation.
Allow Natural Death (comfort measures only): A physician's order instructing providers to only offer comfort measures such as hydration, pain medication, grooming, as a patient dies. Could be used in place of or as an adjunct to a DNR or DNI order.