Submitted by Maureen Kroning RN MSN EdD
As a Nursing Supervisor, I have witnessed many problems associated with patients Advanced Health Care Directives (AHCD). On many occasions, patients are asked about AHCD when their medical condition worsens, leaving education of AHCD lacking and often put to the family to make end-of-life decisions. Both nurses and patients have verbalized not understanding AHCD. At the local hospital not only have many nurses acknowledged not understanding their role and responsibility about AHCD, but they also do not really have a good understanding themselves of what AHCD are; therefore, they do not feel comfortable educating patients and families about this vital healthcare issue. Research shows that providing AHCD education is effective in changing not only the treatment preferences of patients, but their attitudes toward end-of-life health care (AHRQ, 2003). There was an eminent need to look into this problem at the local community hospital.
According to Croke and Daguro (2005), many health care professionals have not received education about end-of-life issues, such as AHCD, yet they face an increased exposure and new challenges on how to handle patient’s end-of-life issues orally and in writing. According to Scherer, Jezewski, Graves, Yow-Wu, and Xiaoyan (2006), studies have shown a large number of nurses have given medical treatment to patients even though doing so was contrary to the patients’ AHCD. In a study of 112 nurses, Wood and Del Papa (1996) found that nurses’ knowledge about AHCD was inadequate. Likewise, Crego and Lipp (1998) studied 399 nurses in an acute care teaching hospital and found that the nurses had limited knowledge of AHCD. Further, Crego and Lipp found that though more than half of the nurses admitted to not having a solid understanding of AHCD, they agreed that discussing AHCD with patients is a nursing role; 67% of the nurses indicated that nurses are the most appropriate health care personnel to start AHCD discussions with patients. Based on these findings, the researchers concluded that both caregivers and hospital policy makers need to take a long-term view of their responsibilities for educating the individuals who are conveying AHCD information to patients (Crego & Lipp, 1998).
Thelen (2005) reported that even though there is an increased focus on end-of-life care, nurses and doctors feel that they do not have the educational preparation needed to appropriately assist patients and patients’ families at the end of the patients’ lives. This lack of education contributes to nurses’ and doctors’ assertion that decision making regarding end-of-life care is the most common ethical problem in clinical practice (Thelen, 2005). Thelen reported that a lack of education results in nurses often disagreeing with the decisions doctors make in regard to end-of-life care, such as whether to continue or discontinue certain treatments and at what point; nurses acknowledged that at various times they had provided end-of-life patient care that was contrary to what they believed was right. When nurses do not agree with doctors’ decisions, they feel dissonance and experience moral distress, worrying that they are adding to patients’ suffering when providing end-of-life care. Yet, nurses are tasked with being the liaison between doctors, patients, and patients’ families, addressing the issues identified by doctors at a pace and in a way that is appropriate for the patients’ and patients’ families (Thelen, 2005).
Despite the importance, both legally and ethically, of nurses explaining to patients the importance of AHCD and then following the decisions stated in the AHCD when providing care, many nurses and doctors feel they lack the knowledge and training to meet their legal and ethical obligations. Duke et al. (2007) noted that health care providers’ roles and responsibilities regarding AHCD are vague regarding educating patients on AHCD and discussing end-of-life wishes with patients. Thelen (2005) reported that even though there is an increased focus on end-of-life care, nurses and doctors feel that they do not have the educational preparation needed to appropriately assist patients and patients’ families at the end of the patients’ lives. Patients are greatly affected by the nurses’ lack of knowledge regarding AHCD; particularly, this lack of understanding results in discrepancies between the wishes of patients and the treatments they receive at the end of life. Matsui (2010) found that education on AHCD in the United States is guided by the Patient Self-Determination Act (PSDA) because of the act’s mandate that the AHCD be completed when a patient is admitted to a health care facility, which is not the optimal time to discuss AHCD. Duke, Thompson & Hastie (2009) examined the results of the Patient Self-Determination Act 20 years after it was passed and found that the act has fallen short significantly and that both health care providers and health care consumers are effected, creating a complex ethical and legal issue that needs to be addressed through education, policy reform, effective communication, and further research.
According to Later and King (2007), discussing end-of-life issues in a U.S. hospital can be ineffective and worsen the emotional impact of the patient’s illness. Later and King also found that even though health care personnel are uncomfortable discussing end-of-life care with patients, spending the time to assist patients in completing the AHCD is the key to initiating open discussions about end-of-life decisions with patients, and the optimal time is when the patients are still healthy. Though medical personnel are tasked with providing patients with information on AHCD, Duke et al. (2007) found that more hospitalized patients learn about AHCD from friends, family, and personal attorneys; less than 25% of the patients learned about AHCD from medical practitioners.
The Research Study
Health care workers struggle with decisions about AHCD and often do not understand what their role and responsibilities are in regards to educating patients about AHCD. When nurses are not knowledgeable about AHCD, they are often reluctant to help the patient fill out AHCD, since they are lacking the confidence about the AHCD themselves. In order to develop a corrective action plan a quantitative research study was conducted. The study included a random sampling of 49 Registered Nurses (RN) working full-time on one of the medical/surgical units in a community acute care 325 bed hospital in upstate New York. The guiding research question for the study was: “What is the nurse’s current AHCD knowledge as shown on sections 1, 2 & 3 of the Knowledge-Attitudinal-Experimental Survey on Advanced Directives (KAESAD)? The findings helped to identify the AHCD areas that nurses need to receive education on.
The average age of the nurse was 39.8 years old, the number of years as a RN was 12.429, the hours received on AD education was 1.42, and institutional instruction on AD was 0.72. The total numbers for gender, ethnic background and religion were counted to provide a representation of the sampling of research participants. The majority of participants were female, Caucasian and of Catholic religion.
Individual question item analysis of AD knowledge was used to determine the percentage of wrong responses for each question and to ensure incorporating into the educational program all questions that had an AHCD knowledge deficit noted. This information was instrumental in deciding what specific questions needed to be included in the AHCD educational program. For example, questions that received a score of 75% or less correct, which included questions 6, 7, 9, 12, 14, 17, 18, 23, 24, 25, 27, were not only included into the educational program, but strategies were incorporated to reinforce the knowledge. For instance, question #6 which is an AHCD general knowledge question showed 93.9% incorrect responses and it may have been misinterpreted by participants. This question asked for a true/false or don’t know response. The question asked: “People may appoint anyone they wish as their proxy (agent).” Findings showed three out of out of 49 nurses correctly answered false, since people cannot appoint anyone they want to since the appointed individual must be 18 years of age or older. Perhaps, this was misleading and if the question included anyone as a person over the age of 18, then perhaps nurses would have answered that correctly. Unfortunately, there is no way to determine if this question was misinterpreted by study participants.
Question # 7 and #9 are also AHCD general knowledge questions. Findings showed for question #7 that 47.7% of participants answered incorrectly by answering true that living wills and durable power of attorney for healthcare have to be notarized. Question #9 showed had a 93.6% of participants answered incorrectly by answering true that if an adult patient lacks decision-making capacity and does not have a surrogate decision-maker, health care providers must seek legal permission to stop life-sustaining treatment. Questions # 12, 14 and 17 assessed knowledge of the Patient Self-Determination Act (PSDA). 90% of participants checked that the PSDA created a set of legal statues which is not the case, the PSDA are guidelines to be legislated and enforced by all states and by looking at table 3 it shows 19 participants did not even check true or false. A similar response was noted for question #14 which asked if PSDA requires states to recognize AD which 92% answered yes which is not correct, healthcare facilities require states to recognize AD and the PSDA requires the health care facilities to advise patients of their rights to use advanced directives. On Table 3, question #17, shows that 29 participants again did not check a true or false response. This question asked to answer true or false to: The PSDA does not specify the recommendation for community education. Perhaps the wording: “does not” could be confusing. By examining responses to each question showed a significant knowledge deficit which needs to be addressed in the AHCD educational program for the nurses at the hospital.
Section 3, questions 18-30, from the KAESAD instrument assessed knowledge of NYstate laws regarding AD. Table 3 again shows the percentage of incorrect questions in this section. For instance question number 18 had 48.6% incorrect, question 23 had 54.3% incorrect, question 24 had 42.9% incorrect, question 25 had 50% incorrect and question #27 had 60% incorrect. Each of these questions was included in the AHCD educational program. The nurse identified knowledge deficient areas in this section included: understanding who does NY law recognize as a “qualified” person, how does NY recognize withholding and withdrawing life-sustaining treatment, how does NY state act on cases of pregnant women, can a nurse be prosecuted for refusing to adhere to a patients AD and are advanced directives and durable power of attorney take precedence over a living will. These specific NY state law questions need to be taught in the AHCD educational program so that the nurses practicing in NY State can have sufficient knowledge regarding laws that pertain to advanced directives.
Descriptive statistics included a mean score of 6.6 out of 10 questions asked and a standard deviation of 1.115 for general AD knowledge, a mean score of 3.69 out of 7 questions asked and a standard deviation of 1.710 for PSDA knowledge, a mean score of 6.9 out of 13 questions asked and a standard deviation of 2.584 for NY state law and for total AD knowledge a mean score of 17.2 out of the total 30 questions asked for the study with a 3.819 standard deviation.
Figures 1, 2, 3, and 4 shows the frequency of both the number of participants and the number of correct answers on general knowledge, PSDA, NYS law and total knowledge.
Figure 1. General knowledge.
Figure 2. PSDA knowledge.
Figure 3. New York State knowledge.
It is both professional and vital to consider any limitations, especially those related to the study’s methodology and delimitations that may be present in this study. Prior to administering the survey tool, it was essential to provide a consent that ensured that this study was voluntary and included confidential participation. Participants’ names were not required, and survey scores were not collected to judge or for punitive purposes, but that the results were used to develop an AHCD educational program. As literature has shown, there are limitations to choosing the survey research method. According to Creswell (2008), surveys take time to administer, raise participants’ expectations about the outcomes, and can influence the experimental treatment.
Using the KAESAD survey had many of the same limitations discussed in the literature. Specifically, the limitations of this survey method include that the survey did take time to fill out and took time away from the actual floor nursing assigned that day. The nurses may have rushed or even guessed at answers to finish quickly so they may return back to their floor nursing job. The nurses may have anticipated AHCD questions on the survey and possibly reviewed AHCD knowledge or asked colleagues questions while filling out the survey. The survey design relied solely on numerical scores to assess the nurses’ AHCD knowledge and did not take into consideration that participants may not take the survey seriously and may rush to fill out or even guess at answers. Many participants may not be good test takers, they may have guessed at the answers, and there may not have been a real sense that this survey matters. There is also the limitation that participants may be embarrassed, fear retribution, and even consider it insulting to have to take the AHCD survey. As with most research methods, it is important to be aware of the limitations and to minimize them whenever possible. All of the assumptions and limitations identified can affect the survey results. Thus, it was vital to assess all these limitations, as well as any assumptions and delimitations that may have existed.
The research results showed nurses lack effective AHCD knowledge as evidenced by the mean percentage scores on each of the three sections of the KAESAD survey tool. Findings included a mean percentage score of 66% for general AD knowledge, a mean percentage score of 53% for both PSDA knowledge and NY state AD law and a 57% total AD knowledge score. These findings provided a large picture of knowledge deficit areas that need to be addressed through education. An educational program was developed to address the knowledge deficit areas noted in the research study.
Members of the End of Life Nursing Education Consortium have encouraged the adoption of a national nursing education program to help nursing educators include in course curriculum how to care for dying patients and their families (Matzo, Sherman, Penn, & Ferrell, 2003). This program is focused on nursing educators, using a train-the-trainers approach, helping nursing educators throughout the nation incorporate AHCD training into nursing education. The following themes are integrated in each training module in the program: Family is central to the quality of end-of-life care; the nurse has the role of being the patient advocate; culture is important in planning care; planning needs to address special populations, such as children, the elderly, and the uninsured; end-of-life care is essential for all life-threatening illness; and an interdisciplinary approach to health care is essential (Matzo et al., 2003).
Advanced health care directives are an essential component of patient care; as patient advocates, nurses are not only ethically and morally obligated to educate patients about AHCD, but are also required to by law. According to Croke and Daguro (2005), “When health care providers fail to implement their patient’s advanced directives, they may be faced with liability claims for medical battery, negligence, and malpractice” (p. 19). Concern regarding AHCD issues is particularly relevant because of the increasing elderly population (Lawrence, 2009). Mahon (2010) noted it is imperative that nurses assist and advocate for a comprehensive decision-making process for patients and their families, particularly because of the increase in the elderly population, the fragmented and chaotic health care system, insurance reform, advances in technology, the commercialization of pharmaceuticals, and the increasing surgical options. The research findings and literature review supported the need to not only develop an AHCD educational program for nurses at the local hospital but to incorporate AHCD education in nursing school programs and to continue this education throughout nurses careers so they will be able to effectively advocate and educate their patients about end-of-life wishes.
Agency for Healthcare Research and Quality. (2003). Advanced care planning. Retrieved from http://www.ahrq.gov/research/endliferia/endria.htm
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