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Mary Ann Jezewski is an associate professor in the School of Nursing, University at Buffalo, The State University of New York. She is the director of the Center for Nursing Research and has been the recipient of research grants to study advance directives and end-of-life decision making.
Brian T. Graves is a clinical assistant professor in the School of Nursing, University of Rochester, Rochester, New York. He is responsible for coordinating the acute care nurse practitioner specialty core courses.
Yow-Wu Bill Wu is an associate professor in the School of Nursing, University at Buffalo, The State University of New York. One of his roles is to serve as a statistical consultant to faculty and students.
Xiaoyan Bu is an assistant professor in the School of Nursing at the University of South Carolina, Columbia, SC. She teaches pediatric content.
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Corresponding author: Yvonne K. Scherer, School of Nursing, 817 Kimball Tower, University at Buffalo, The State University of New York, 3435 Main St., Bldg. 37, Buffalo, NY 14214-3079 (e-mail: yscherer{at}buffalo.edu).
The purpose of this study was to describe critical care nurses knowledge, attitudes, confidence, and experiences regarding advance directives and end-of-life decision making. The aims of the study were to determine
Background and Significance Laws Governing Advance Directives
Each of the United States has laws/statutes governing advance care planning in the form of directives. New York State, where this study took place, has a healthcare proxy law and a do-not-resuscitate statute. Living wills are legal in New York State on the basis of case law. The federal government enacted the PSDA in 1991; the act mandates that any healthcare institution that receives Medicaid or Medicare funds must inform its patients about the patients right to self-determine care at the end of life according to the laws of the state in which the institution resides. Despite more than a decade of laws governing patients rights to end-of-life decisions, it is estimated that less than 20% of the US population has completed an advance directive.13
Nurses Knowledge of and Attitudes Toward Advance Directives
Few data are available on nurses knowledge and skills in advance directives. Crego and Lipp4 found that a volunteer sample of nurses (n = 399) from a midwestern acute care teaching hospital had limited knowledge of advance directives. A 44-item questionnaire developed by the researchers4 was used to assess the nurses knowledge. The range of scores was wide (40%95%), indicating marked deficits for some nurses. Also, more than half the nurses indicated that they did not have a good understanding of advance directives. The nurses surveyed concurred, however, that discussion of advance directives is within nurses professional role. A total of 67% thought that a nurse was the most likely and most appropriate care provider to begin discussion of advance planning and end-of-life decisions with patients.
Similarly, in a small survey of hospital nurses (n = 112), Wood and DelPapa5 found that although nurses had favorable attitudes toward advance directives, the nurses knowledge was inadequate. A total of 76% of the nurses had low knowledge scores on questions on laws about advance directives.
Solomon et al6 explored nurses and physicians knowledge of and attitudes toward national recommendations regarding patients rights to forgo life-sustaining treatments. The investigators concluded that changes in the care of dying patients have not kept pace with national regulations, in part, because physicians and nurses disagreed with and were unaware of some key guidelines.
End-of-Life Decision Making in the ICU
Critical care nurses are often involved with patients and patients families in end-of-life decision making.7 The nature of the critical care environment alone makes addressing advance directives unique compared with other aspects of healthcare. First, the families of most patients are experiencing extremely high levels of stress because of the severity of their loved ones illnesses and the uncertainty associated with the outcome.8 Second, the use of sophisticated interventions and equipment such as ventilators and ventricular assist devices make it difficult for patients and their families to understand the scope of the interventions that may be used.9,10 This lack of understanding leads to increased anxiety and further complicates making decisions about advance directives.11 Finally, patients often cannot participate in the advance directive process, further exacerbating the difficulty of the decision making.12
An essential contribution of critical care nurses who work with patients and patients families is interpreting the patients experience of illness and treatment to assist the families in decision making when the patients are unable to make decisions.13 In order to interpret patients experience of illness and treatment and assist patients families in making decisions, nurses must maintain open lines of communication with patients and the patients families. For example, critical care nurses interactions with patients and/or patients families who were signing do-not-resuscitate consents have been investigated by using a qualitative perspective (grounded theory).1416 The findings of the studies indicate the importance of establishing a trusting relationship with patients and the patients families, maintaining open communication with the patients and families, and serving as the patients advocate. Other important roles identified by nurses include acting as a decision maker and educating patients and the patients family members.15,17 In a qualitative study of family decision making for ICU patients, Jacob17 found that skillful and supportive involvement of care providers was related to more positive long-term outcomes for patients family members. However, little empirical evidence is available on critical care nurses knowledge of and attitudes toward advance directives or on the roles the nurses are actually performing.
Baggs and Schmitt11 assessed the current research on end-of-life decisions in adult intensive care. They concluded that few studies are available on nurses involvement in end-of-life decision making. ICU nurses reported frustration about their limited role in this decision making, and ICU nurses disagreed and were confused about the best way to care for patients at the end of life. Additional data on nurses knowledge of, attitudes toward, and experiences with advance directives and end-of-life decision making must be collected and analyzed before an intervention can be implemented to inform critical care nurses about the best way to assist patients and patients families with advance directives.
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Sampling
A random sample of members of the American Association of Critical-Care Nurses (AACN) in New York State who are registered nurses and who described their work status as full-time or part-time on their AACN membership application received the mailed survey. A state survey rather than a national survey was used because we wanted to measure critical care nurses knowledge of the state laws and statutes governing completion of advance directives in the state where the nurses lived and because the logistics of scoring the knowledge subscale for all 50 states would have been prohibitive. Using power analysis, we determined that a minimum of 107 subjects would have 80% power to detect a medium effect size of 15% at
= .05 for the multiple-correlation question of whether relationships exist between (1) selected demographic characteristics and (2) knowledge, attitude, confidence, and experience regarding advance directives and end-of-life decision making.
Because of the large number of items on the survey and the expected low response rate of mail surveys, the AACN membership was oversampled. The AACN membership in New York State is 4876 nurses; the names of a random sample of 1000 (20.5%) members from New York State were obtained from AACN. The return rate for the survey was 21%; a total of 210 surveys were usable for data analysis.
Instrument
The Knowledge, Attitudinal, Experiential Survey on Advance Directives (KAESAD) instrument was developed by Jezewski et al18 to measure respondents knowledge of, attitudes toward, and experiences with advance directives and end-of-life decisions. Reliability and validity of the instrument were established through an expert panel (n = 7) and a test-retest pilot study with 56 oncology nurses. The panel consisted of experts in end-of-life care and advance directives and represented the disciplines of nursing, medicine, law, and bioethics. The panel provided feedback about each of the 110 items in the original draft of the survey. On the basis of the opinions of the panel and the judgment of the investigators, changes were made to 22 items, 9 items were added, and 4 items were deleted.
After the changes were made, the test-retest pilot study with the 56 oncology nurses was done. A convenience sample of 18 graduate nursing students was also used to establish test-retest reliability. Test-retest reliability and the Cronbach
were analyzed. The results of the analysis indicated test-retest scores for the various scales (r = 0.510.90), test-retest proportion of agreement for individual items (0.711.0), and internal consistency for the various scales (Cronbach
.58 to .95).
The KAESAD instrument used in this survey consists of 115 items. Table 1
gives the principal components of the survey, the numbers of items in each section, and the internal consistency (Cronbach
) of the attitude, confidence, and experience subscales for the data from the pilot study.
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The second scale consisted of 20 items about nurses attitudes toward completing advance directives and end-of-life decision making. Nurses were asked to respond to each item by using a 6-point Likert scale (1= strongly disagree, 6 = strongly agree). Items addressed nurses attitudes toward patients rights, starting and stopping life support, artificial hydration and nutrition, nurses role in informing patients, and assisted suicide.
The third scale consisted of 5 items to assess nurses clinical experience with advance directives. Nurses were instructed to answer yes or no to the items. Two additional items not included in the scale asked nurses (1) Have you provided treatment to patients whose advance directive indicated otherwise? and (2) Have you observed others providing treatment to patients whose advance directive indicated otherwise? Nurses responded yes or no. These questions were separated from the third scale in order to improve the internal consistency of the scale.
The fourth scale consisted of 11 items on nurses confidence in helping patients complete advance directives. Items addressed the nurses confidence in answering the questions of patients and patients families, teaching others about advance directives, mediating in disagreements related to advance directives, and advocating for patients advance directives. Nurses responded by using a 5-point Likert scale (1 = not at all confident to 5 = very confident).
The fifth scale consisted of a series of 20 statements about the nurses professional experience with end-of-life decision making. Again the nurses were asked to respond to each item by using a 6-point Likert Scale (1 = strongly disagree to 6 = strongly agree). Items included statements about professional opinions related to communicating prognosis, how patients make decisions, whether the presence of advance directives encourages communication, and nurses roles.
The instrument also contained 26 items on demographic characteristics. The responses to these items were used to assess personal, professional, and institutional variables. Personal variables included race, religion, sex, marital status, age, and whether the respondent had completed an advance directive for himself or herself. The professional variables included professional education preparation, clinical practice site, current position, AACN certification status, work status, and amount of formal instruction on advance directives. Institutional variables included geographic location of the workplace, the presence of an ethics committee in the work-place, and how patients advance directives are formally communicated within the workplace.
The last item of the instrument was an open-ended question: What do critical care nurses need most to increase their ability to assist patients with advance directives? The written responses to this question are being analyzed by using qualitative techniques and will be reported separately.
Procedure
The 1000 nurses were mailed the KAESAD survey. Those nurses who might have discarded their survey were given a telephone number on a separate sheet of paper to request a new survey if they desired. This strategy was selected, rather than a second letter only to nonrespondents, to ensure anonymity of respondents. The survey was mailed by using a bulk mail permit and the university mailing service. A stamped self-addressed envelope was included to facilitate return of the survey. Approval to conduct the study was obtained from the University at Buffalo institutional review board.
Data Analysis
Data were entered into Excel (Microsoft Corp, Redmond, Wash) and imported into SPSS, version 10.0 (SPSS Inc, Chicago, Ill). Those questionnaires with small amounts of missing data, less than 20% (eg, 12 items per knowledge, attitude, or experience subscale), were included in the analysis with the missing data imputed by the substituted mean. SPSS statistical software was used for the analysis. Statistical significance was set at P < .05.
Knowledge questions were answered true, false, or dont know. In order to determine knowledge scores, dont know answers were treated as incorrect. Nurses attitudes toward completing advance directives and experience with end-of-life decision making were reduced to 2 levels. The 3 choices reflecting some level of agreement (strongly agree, moderately agree, agree) were used to represent agreement. Similarly, the 3 choices reflecting some level of disagreement (disagree, moderately disagree, strongly disagree) were used to represent disagreement. Because the Cronbach
values for the attitude scale (.58) and professional based experience with end-of-life decision making (.59) were low, items for these scales were looked at individually, not as scales.
Scores for experience with advance directives (5 items) were based on yes answers receiving a score of 1. Confidence scores were based on total scores for the 11 items in the scale and were based on a 5-point Likert scale (1 = not at all confident to 5 = very confident). Scores could range from 11 to 55.
The relationships among nurses personal, professional, and institutional characteristics and their knowledge of advance directives, attitudes regarding advance directives, experiences with advance directives, and confidence in helping patients complete advance directives were determined by using correlations or analysis of variance as appropriate to the level of measurement.
| Results |
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The second knowledge subscale focused on questions related to the principal components of the PSDA. Items in this subscale included health-care facilities, obligations, legislation enacted, requirements to inform patients about their rights, and training of staff. Respondents scored lowest on this knowledge subscale.
The third knowledge subscale was used to measure respondents knowledge of the laws of New York State on advance directives. Questions on this subscale focused on the age when a person can complete an advance directive, what the law permits regarding withdrawing and withholding care, and legality of advance directives from other states. The respondents score was 54.4%.
Total knowledge scores were calculated by using the 30 items from the 3 subscales. The total knowledge mean score was 17.80 of a possible 30 or 59.3%.
Attitudes Toward Advance Directives and End-of-Life Decision Making
The nurses were asked to respond to the series of 20 items regarding the nurses attitudes toward advance directives and end-of-life decisions. Table 4
presents the mean scores, SDs, and percentage of agreement for some of those items. Percentage of agreement was determined by reducing the agree, moderately agree, and strongly agree responses into a single category. Internal consistency in this study according to the Cronbach
was .57 (n = 210).
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Experience With Advance Directives
Critical care nurses experiences with advance directives were measured by using a yes or no response to a series of 5 questions. Internal consistency for this scale was low: Cronbach
=.58, n=210. The respondents mean yes score was 4.24 (maximum = 5) with an SD of 1.05. Most of the respondents had cared for patients who had advance directives (98.0%), counseled patients and patients families about advance directives (84.8%), and initiated discussion with patients about advance directives (82.9%). Two additional questions were asked about experience with advance directives. Approximately half of the respondents, 100 (48.1%) of 208, had provided treatment to patients whose advance directives indicated otherwise, and 149 (71.3%) of 209 had observed others providing treatment to patients whose advance directives indicated otherwise. Because treatment was not operationally defined, the specifics as to what the treatments included cannot be elaborated on.
Level of Confidence
The respondents confidence in their role of assisting patients and patients families was measured by using the 11-item scale. Internal consistency for this study was excellent for the confidence scale: Cronbach
=.93, n=210. Subjects responded by using a 5-point Likert scale (1 = not at all confident to 5 = very confident). The total mean score for confidence was 40.2 (maximum score = 55) with an SD of 8.97. The nurses were least confident (scores <3) about knowing the PSDA (mean score 2.60, SD 1.14) and about knowing state laws on advance directives (mean score 2.89, SD 1.05). Respondents were most confident (scores >4) on items dealing with confidence in initiating (mean score 4.06, SD 1.05) and answering patients (mean score 4.03, SD 0.98) and patients families (mean score 4.03, SD 0.96) questions about advance directives.
Professional Experience With End-of-Life Decision Making
The nurses were also asked to respond to 20 statements about professional experience with end-of-life decision making. Internal consistency was low: Cronbach
=.54, n=210.
Table 5
gives mean scores, SDs, and level of agreement of respondents with the statement for some of the statements. Agreement was low for the statements that the amount of time nurses spend discussing advance directives with patients is sufficient (12.6%) and that patients have enough knowledge about their medical condition and potential treatments to prepare advance directives (29.3%). Generally, respondents agreed that there is not enough time to discuss advance directives (59.1%) and that nurses usually know the wishes of their patients about advance directives (58.5%). Less than half (42.5%) agreed that information in an advance directive is sufficient to direct treatment.
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Establishment of an advance directive by immediate family members was significantly correlated with the respondents experience, confidence, and total knowledge scores. Nurses whose family members had an advance directive had significantly higher scores for experience with advance directives (P =.005), confidence (P =.004), and knowledge (P =.005) than did nurses whose family members did not have advance directives. Also, nurses with advance directives of their own had higher scores for experience with advance directives (P =.01) and confidence (P =.001) than did critical care nurses without advance directives of their own.
In addition, education in the workplace on advance directives was significantly correlated with experience and total knowledge scores. Nurses who had education in the workplace on advance directives had significantly higher knowledge scores (P =.01) and more positive experience with advance directives (P =.03) than did nurses who had no education on advance directives.
| Discussion and Conclusions |
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Overall the nurses were knowledgeable about advance directives in general but not about the PSDA or the New York State law on advance directives. CCRN certification was positively correlated with general knowledge scores. The possibility exists that CCRN certification may help increase nurses understanding of advance directives. The finding that nurses who had education in the workplace on advance directives had higher knowledge scores and more positive experiences with advance directives and end-of-life decision making than did nurses who did not have such education may suggest that staff education in the workplace is an effective way to make nurses knowledgeable about advance directives and end-of-life decision making.
Nurses attitudes reflect a participatory role in assisting/advocating for patients rights to make decisions about end-of-life care and advance directives. Support for assisted suicide was high, 42.2% of the respondents, and most respondents did not have an issue with stopping treatment once treatment had been started.
Although nurses confidence was low regarding the PSDA and New York State law on advance directives, the nurses were very confident in their ability to assist patients and patients families in completing advance directives. The high percentage of nurses who either provided treatment or observed others providing treatment to patients whose advance directives indicated otherwise is disturbing. Although percentages vary, many researchers1921 have reported that healthcare providers awareness of and use of patients existing advance directives are quite limited. Baggs and Schmitt11 noted that despite emphasis on the need to involve patients, patients families, and care providers in end-of-life decision making, evidence is strong that physicians often make these decisions with little input from others. In a study by Wilson,22 only 13.1% of do-not-resuscitate orders were based on patients preferences. Maxfield et al23 found that unwanted cardiopulmonary resuscitation was administered to 11% of their study sample who had advance directives. Critical care nurses in our study who had completed their own advance directives had higher confidence scores than did nurses without advance directives, thereby supporting beliefs that individuals who complete their own advance directives are better able to assist others in completing such directives.23
Professional experiences with end-of-life issues may reflect the hectic pace and high stress levels encountered in an ICU environment. The responses to our survey also address the ambiguity in advance directive decision making related to the types of care uniquely offered in the ICU. This fact is evidenced by the low percentage of agreement to items such as "Most patients have enough knowledge about their medical condition and potential treatments to prepare advance directives." Treatment options can be particularly problematic in an ICU environment because ICU care is not simply a matter of agreeing or disagreeing to have cardiopulmonary resuscitation. Many other life-prolonging invasive interventions, such as use of continuous venovenous hemodialysis and ventricular assist devices, that patients and families are unaware of are possible, and once informed about these interventions, patients and patients families may choose not to have them. Treatment options need to be explained to patients and their families in terms they can understand. One way that may improve the awareness of a patients family members of treatment options when advance directives lack sufficient information to direct treatment is the family conference in which family members, physicians, nurses, and social workers can discuss end-of-life care issues.24 Nurses also need to recognize their responsibility to serve as patients advocates, making sure that the patients advance directives are honored and their wishes followed.
| Limitations |
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= .57), experience with advance directives (Cronbach
= .58), and professional experience with end-of-life decision making (Cronbach
= .54) scales. The limitation of low Cronbach
values was addressed by looking at the items individually, not as scales. Additional use and testing of the KAESAD instrument are needed for additional support of its psychometric characteristic. Also, the correlations, although statistically significant, are weak and therefore may have little influence on the findings. The findings are representative only of critical care nurses who are members of AACN. The survey was conducted in New York State and may not reflect the knowledge and attitudes of nurses in other states. The response rate was relatively low. The length of the survey (12 pages) may have contributed to the low response rate.
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This article has been cited by other articles:
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E. B. Later and D. King Advance Directives: Results of a Community Education Symposium Crit. Care Nurse, December 1, 2007; 27(6): 31 - 35. [Full Text] [PDF] |
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