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The purpose of this cross-sectional survey was to describe the level of knowledge and education nurses receive on advance directives (ADs), the Patient Self-determination Act, and Illinois state law. A modified version of the Knowledge-Attitudinal-Experiential Survey on Advance Directives was used with a convenience sample of 110 nurses from general medical-surgical, rehabilitation, oncology, intensive care unit, and recovery units in a medical center in Illinois. Results suggested that respondents were somewhat knowledgeable about general AD items, but less knowledgeable about the Patient Self-determination Act and Illinois state law. Clearly, nurses need further education regarding rules and regulations concerning Illinois law on ADs.
There is a legal mandate for hospitals and healthcare facilities to comply with the Patient Self-determination Act (PSDA).1 The American Nurses Association2 recommends that nurses advocate for the participation of patients in end-of-life decisions. However, nurses' compliance has been less than enthusiastic.3 Nurses are trusted by patients and are in a position to make important contributions to the patient in end-of-life decisions. But nurses first must have a pragmatic understanding of exactly what an advance directive (AD) is and how one is executed correctly.4
The professional association asserts that nurses should be aware of the legalities associated with ADs.2 Exactly what knowledge nurses have about ADs is not known. Prior investigations suggest that knowledge of ADs and participation in patient education are strongly related, but further exploration needs to be done.3 Discussion about end-of-life issues was uncommon in a study of seriously ill patients where death was imminent, suggesting that some physicians clearly ignore opportunities to involve patients and/or the surrogate decision makers in treatment options and end-of-life care.5 Advance directives are often complex and confusing to both the healthcare provider and the patient. Every state has legislation addressing ADs, with laws varying from state to state.5 Such complexity may well contribute to poor rates of completion.
Although nurses may be familiar with ethical concerns, this does not diminish the distress and tension that may complicate these situations.6 Hospitals that receive federal funding are mandated to provide AD information at the time of in-patient admission.1 Generally, this task is delegated to nurse employees who are responsible for discussing, implementing, and documenting ADs.3 However, this mandate often results in conflict. The nurse may not be knowledgeable about ADs or is uncomfortable with the subject. The patient is likely very ill and poorly positioned for self-determination. The families or surrogates are often reluctant to commit to definitive treatment plan; they tend to be more optimistic. The end result is low completion rates of ADs.3,7
Evidence-based barriers to the completion of ADs that have been reported include healthcare providers' lack of knowledge and personal discomfort with death,8 little involvement from the medical staff, and difficult communication with the patient and family.9 There is ample evidence in the literature of the need for more education about ADs because nurses' knowledge and confidence about ADs (PSDA and state) appear to be low.10
Nurses are perhaps the key informants on ADs but report inadequate knowledge, lack of resources, time, and involvement of other healthcare providers and institutional support.3,7,11-13 Nurses are supposed to inform patients about ADs; however, little empirical evidence exists to suggest that they actually do.10 Nurses tend not to see AD discussion and completion as part of their professional role because of their perceptions of insufficient knowledge.14 All of these issues clearly suggest the need for further investigation.
The purpose of this study was to describe nurses' general knowledge of ADs, the PSDA, and Illinois state law using a self-administered instrument, the Knowledge-Attitudinal-Experiential Survey on Advance Directives (KAESAD).5 Results may provide the basis of educational programs for nurses and may enhance advocacy for the patient and family. The knowledge gap in this area would also be lessened.
The research question was: In an Illinois medical center, what is the level of knowledge of registered nurses regarding ADs, the PSDA, and Illinois state law?
A descriptive design was used for this study. A medical center located in Illinois served as the setting. The medical center has a total of 514 licensed beds and employs nearly 3,000 staff. The institutional review board at the University of Illinois at Chicago and the participating hospital approved this study.
A convenience sample (N = 110) of registered nurses engaged in 50% time or more of patient care was recruited. Only nurses in the medical surgical, intensive care, cardiology, step-down, oncology, and transitional care units working full or part-time were invited to participate. Nurses who practiced in the pediatric, maternal-child, and emergency departments were excluded.
Three subscales of the KAESAD5 were used for data collection. These 3 subscales totaled 30 items and included questions about general knowledge on AD (10 items), knowledge of PSDA (7 items), and knowledge of Illinois state law (13 items). The respondents were requested to answer by checking "true" (score of 1) or "false" (score of 0). A nonscored category of "don't know" was included to minimize guessing. Thus, total knowledge scores could range from 0 to 30; the higher the score, the more knowledgeable the respondent.
For the KAESAD survey, reliability and content validity of the instrument were established through a pilot test-retest and an expert panel. The panel represented disciplines from nursing, medicine, law, and bioethics. Test-retest for stability over a 3-week period (r = 0.51-0.90), test-retest proportion of agreement for individual items (r = 0.71-1.0), and internal consistency (Cronbach [alpha] = .58-.95) reliability were, for the most part, acceptable.10
Data were also collected concerning personal, professional, and institutional characteristics. Personal characteristics included race, religion, sex, marital status, age, and whether the respondents had completed an AD for themselves. The professional characteristics included educational preparation, clinical practice site, work status, and the amount of formal instruction on ADs. Institutional items included the presence of an ethics committee and descriptions of formal communication of ADs at this hospital.
Surveys were distributed at the monthly nursing staff meetings where the researcher introduced the study, answered questions, and left the room. Participants completed the instruments and returned them in a sealed envelope. Consent was implied by the return of a completed survey.
The data were entered into Excel and then imported into the SPSS version 16.0 (SPSS Inc, Chicago, Illinois). Data analysis was conducted using descriptive statistics (means, SDs, frequencies, and percentages). Statistical significance was set at P < .05.
A description of the sample can be found in Table 1. The typical participant was a middle-aged, married, white, Protestant woman who had received an associate degree in nursing and had practiced about 11 years. Most were engaged in primary care and worked full time. Respondents were asked if they had a personal ADs, and most reported "no" (n = 87, 79.1%), whereas 61 (55.5%) indicated having an AD for a family member.
Participants were queried about formal AD instruction. During basic nursing education, an average of 1 (SD, 1.0) hour of AD education was reported to have been received by 45% of the respondents. Sixty respondents (55%) reported having received no hours of AD education in school.
Respondents were about evenly split as to receiving AD instruction at the workplace (none = 54, 49.1%; some = 56, 50.9%). About one-third (n = 39, 36.1%) identified an AD in-service program, whereas others (n = 18, 16.5%) selected the hospital policy manual as a reference about ADs. Almost all (n = 102, 92.7%) reported that the workplace had an ethics committee, but two-thirds (n = 73, 66.4%) were not aware of the ethics committee schedule. One nurse reported being a committee member.
Respondents were asked about the institutional location of communication concerning ADs. Multiple locations were identified, with specific indexed section of the medical record being the most common.
The total knowledge score (30 items) is composed of separate scores for general AD knowledge (10 items), PSDA knowledge (7 items), and Illinois state law (13 items) (Table 2). If these score results were letter graded, most participants would receive a letter grade of "D" because many scores were less than 70%. With the exception of general AD knowledge, respondents typically answered less than half the items correctly.
Spearman [rho] correlation suggested that there was no significant relationship between age in years of the respondent and general AD knowledge score, PSDA score, Illinois State law score, or overall total knowledge score (P > .05). Spearman [rho] correlation indicated that there was no significant relationship between the number of hours of instruction regarding ADs during basic nursing education and general knowledge of ADs, PSDA, Illinois State law, and overall total knowledge scores (P > .05). Also, Student t test suggested that there was no significant difference in formal institutional instruction for ADs and general knowledge on ADs, PSDA knowledge, Illinois state law knowledge, and overall total knowledge scores (P > .05). One-way analysis of variance indicated that there was no significant difference in any of the AD knowledge scores with respect to highest education earned (diploma, associate, baccalaureate).
This study used selected portions of the survey instrument (KAESAD) to determine nurses' general knowledge of ADs, PSDA, and Illinois state law.3 In this study, the knowledge scores on general ADs were similar to other studies; the PSDA knowledge scores were lower, and the Illinois state law scores were poor.10,15,16 In total, the average score was 48% of 100% in this study. Illinois state law scores (34%) were more than 20% below the average of previous studies of oncology nurses (53%), critical care nurses (54.4%), and emergency nurses (56%). Total knowledge scores in our study (48%) were below the same studies of emergency nurses (59%), oncology nurses (58%), and critical care nurses (59.3%).10,15,16 Our findings demonstrate the continued lack of knowledge concerning ADs. As healthcare providers, nurses clearly need more knowledge and education about ADs to effectively assist patients and families in the understanding and completing of these documents.
Half of the respondents reported receiving formal education at this institution, but this did not seem to influence knowledge regarding ADs. About one-third reported attending an in-service, and far fewer received AD information from a manual. However, it is not clear what specific information was actually given and when this instruction was received. What is clear is that whatever was presented was insufficient and that this content needs far greater emphasis in healthcare organizations. Little help appears to come from basic nursing education because results indicated that basic nursing education as a source of knowledge is scant at best. Most respondents received only 1 hour of education during basic nursing school, which is consistent with prior literature.17 For this vital content to be taken seriously by both practicing nurses and by nursing students, employment and educational institutions need to redesign their curricula to place appropriate emphasis upon it.
Given the low scores overall, nurses may not understand the patient and family wishes regarding medical treatment during the hospital stay and, more importantly, at the end of life. Not surprising, only a small number of the respondents reported having a personal AD, reflecting the estimates that AD completion rates remain below 20% in the general population.18
Specifically, nurses need to know that all AD forms may be generated through legal offices or may be printed through the free online Illinois Public Health Department Web site,19 which comes complete with instructions for the public. The forms commonly prepared are the healthcare power of attorney (HCPOA) and living will (LW). In addition, the do-not-resuscitate form is a medical treatment order stating that cardiopulmonary resuscitation will not be attempted if the heart and/or breathing stops. However, there are specific requirements for this document to be completed.19 Because each state identifies specific laws and rules regarding AD forms, it is imperative that nurses be aware of the rules of these documents in the signing, witnessing, and the specific definition of the patients' illness.
The HCPOA form gives patients the opportunity to have someone make healthcare decisions for them when they are unable or incapable to make these decisions for themselves.19 The agent position (HCPOA) takes courage to carry out the patients' wishes as modern medicine has a great propensity for imposing procedures or treatments that create ethical dilemmas and that may result in adverse outcomes. Patients and families may not comprehend the consequences and may have no desire to accept this treatment. For example, nurses have anecdotally reported the witnessing of respiratory intubations, gastric tube insertions for artificial feedings, mechanized resuscitation procedures, and surgical procedures; all of which possibly resulted in poor quality care or in the delay of an inevitable death. These are some of the issues that patients and families may face. Given their intimate access to patients, nurses can prevent these crises by discussing the implications of ADs, specifically related to life-sustaining/prolonging treatments. These families clearly need our support.
Living wills are legally recognized in the state of Illinois and indicate whether patients want death-delaying procedures at a time that they are likely unable to state these wishes. Unlike a HCPOA, this applies only if the patient has a terminal condition, and again, there are specific rules for signing and witnessing. Together, the HCPOA agent and the LW may provide nurses the valuable information needed to assist families and the patients in selecting their medical treatment during hospitalization, as well as end-of-life care.19 These specific legal Illinois AD forms (which may be cancelled or revoked by verbal or written form according to the rules) provide information directly affecting how nurses examine, assess, and write the nursing treatment plans. When used properly, these forms may assist in interpreting medical treatments and end-of-life care for the patient and family.
Our findings leave little doubt as to the need for more education and for continued updates to that education. Nurses require more education to understand and relay this knowledge to assist patients and their families. The lack of knowledge found in this study may be explained, in part, by the scarcity of AD content in nursing textbooks and formal education in nursing school.17 Conducting didactic instruction in nursing schools with discussion of case studies would likely increase the knowledge base of the nurse. In addition, the nurse, at the very minimum, would recognize the significance of these legal forms. Continuing this type of education in the clinical setting is crucial as with learning any new communication or nursing skills. Clinical instructors and the nursing student would apply this knowledge; demonstrate the organization, signing, and witnessing of these AD forms; and provide clear documents together that the patient and family may appreciate. Those in hospital administration need also take heed as to the need for educating their staff. Continuing education is crucial.
Shortened hospital stays for patients constrain the time that nurses have to devote to explaining and securing AD documentation. Nurses are challenged to provide efficient and effective nursing care with positive outcomes. However, hospitals that receive Medicare and Medicaid funding are required to provide information regarding AD documents. Should this be the role of nursing? How realistic is it to make staff nurses responsible for obtaining legal AD documents? Perhaps a new paradigm is warranted.
Staff nurses have not been trained in the PSDA and state law with all the rules and regulations to assist in completion of ADs. While staff nurses may be the liaison for patients in hospitals, these documents may and possibly should be the sole responsibility of an individual trained in ethics who can present and discuss such sensitive issues associated with ADs. Moreover, these legal documents are complicated and need to be carefully explained to patients and families so that there are no misunderstandings. This requires a depth of knowledge that may well be an unrealistic expectation for every staff nurse. Such discussions also require significant clinical knowledge. In fact, an advanced practice nurse could be prepared to assume the role of such a liaison. Advanced practice nurses have clinical knowledge and experience and could be educated about the varied rules, regulations, and issues associated with ADs. Using an advanced practice nurse in such a role could well increase the completion rates of ADs, honor patients' treatment preferences, and improve patient satisfaction.
This study has several limitations. Only 1 medical system in the state of Illinois was used for data collection. Data were collected on specific nursing units at a monthly staff meeting, and some staff may not have been in attendance. In addition, the sample was homogenous in that primarily white, non-Hispanic women participated. Limited recall from participants may have distorted the findings. Lastly, this study used a convenience sample, so findings are not generalizable.
Studies have shown that nurses need more knowledge on ADs to formulate these documents that affect the cost and quality of patient care. Further studies should address nurses' membership on ethic committees that may increase the ratio of knowledge and practice for positive patient outcomes. Studies comparing AD documents to patient treatments may indicate specific interventions for nursing management. Finally, an intervention study needs to be conducted where advance practice nurses trained in AD content are used to explain and obtain the documents from patients and families. Appropriate outcome measures that could be used include rate of completion and patient/staff satisfaction.
Nurses continue to have marginal knowledge concerning AD forms and rules for documentation. If such information was presented and reinforced, nurses may be better prepared to advocate for patients and comply with the treatment wishes requested by the patients and families. Furthermore, assigning the role to a skilled advanced nurse practitioner may be the most effective model to address this dilemma, although more research is needed. Patients and families must be given their legal right to determine the medical treatment and end-of-life care. These legal AD forms may prevent a personal, emotional, and financial crisis with the patient and family when used with diligence and care. Clearly, nurses need more support in this important area of healthcare.
1. Omnibus Budget Reconciliation Act. Title IV, section 4206. Congressional Record, October 26, 1990. http://www.fha.org/acrobat/Patient%20Self%20Determination%20Act%201990.pdf. Accessed February 1, 2006. [Context Link]
2. American Nurses Association. Position statement: nursing and the Patient Self-determination Acts. 1991. http://nursingworld.org/readroom/position/ethics/etsdet.htm database. Accessed February 10, 2006. [Context Link]
3. Ryan CJ, Santucci MA, Gattuso MC, Czurylo K, O'Brien J, Stark B. Perceptions about advance directives by nurses in a community hospital [electronic version]. Clin Nurse Spec. 2001;15(6):246-252. [Context Link]
4. Jarr S, Henderson ML, Henley C. The registered nurse: perceptions about advance directives [electronic version]. J Nurs Care Q. 1998;12(6):26-36. [Context Link]
5. Jezewski MA, Meeker MA, Schrader M. Voices of oncology nurses: what is needed to assist patients with advance directives [electronic version]. Cancer Nurs. 2003;26(2):105-112. [Context Link]
6. Scanlon C. Ethical concerns in end-of-life care: when questions about advance directives and the withdrawal of life-sustaining interventions arise, how should decisions be made? [electronic version]. Am J Nurs. 2003;103(1):48-55. [Context Link]
7. Goodwin Z, Kiehl EM, Peterson JZ. King's theory as foundation for an advance directive decision-making model [electronic version]. Nurs Sci Q. 2002;15(3):237-241. [Context Link]
8. Ferrell B, Virani R, Grant M, Coyne P, Uman G. Beyond the Supreme Court decision: nursing perspectives on end-of-life care [electronic version]. Oncol Nurs Forum. 2000;27(3):445-455. [Context Link]
9. Neuman K, Wade L. Advance directives: the experience of health care professionals across the continuum of care. Soc Work Health Care. 1999;28(3):39-54. [Context Link]
10. Jezewski MA, Brown JK, Wu YB, Meeker MA, Feng J, Bu X. Oncology nurses' knowledge, attitudes, and experiences regarding advance directives [electronic version]. Oncol Nurs Forum. 2005;32(2):319-327. [Context Link]
11. Crego PJ, Lipp EJ. Nurses' knowledge of advance directives [electronic version]. Am J Crit Care. 1998;7(3):218-222. [Context Link]
12. Gilbert M, Counsell CM, Guin P, O'Neill R, Briggs S. Determining the relationship between end-of-life decisions expressed in advance directives and resuscitation efforts during cardiopulmonary resuscitation [electronic version]. Outcomes Manag Nurs Pract. 2001;5(2):87-92. [Context Link]
13. Manias E. Australian nurses' experiences and attitudes in the "do not resuscitate" decision [electronic version]. Res Nurs Health. 1998;21:429-441. [Context Link]
14. Duke G, Thompson S. Knowledge, attitudes and practices of nursing personnel regarding advance directives [electronic version]. Int J Palliat Nurs. 2007;13(3):109-115. [Context Link]
15. Jezewski MA, Feng JY. Emergency nurses' knowledge, attitudes, and experiential survey on advance directives [electronic version]. Appl Nurs Res. 2007;20:132-139. [Context Link]
16. Scherer Y, Jezewski MA, Graves B, Wu YW, Bu X. Advance directives and end-of-life decision making. Survey of critical care nurses' knowledge, attitude, and experience [electronic version]. Crit Care Nurse. 2006;26(4):30-40. [Context Link]
17. Lipson AR, Hausman AJ, Higgins PA, Bruant CJ. Knowledge, attitudes, and predictors of advance directive discussions of registered nurses [electronic version]. West J Nurs Res. 2004;26(7):784-796. [Context Link]
18. Goldblatt D. A messy necessary end: health care proxies need our support [electronic version]. Neurology. 2001;56(2):148-152. [Context Link]
19. Illinois Department of Public Health 2007. Statement of Illinois law on advance directives and DNR orders. Advance Directives. 2007. http://www.idph.state.il.us/public/books/advirdir4.htm database. Accessed January 16, 2007. [Context Link]
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