State Tested Nursing Aides’ Provision of End-of-Life Care in Nursing
State Tested Nursing Aides’ Provision of End-of-Life Care in Nursing Homes Implications for Quality Improvement Emma Nochomovitz, MPH Maryjo Prince-Paul, PhD, APRN, AHPCN, FPCN Mary Dolansky, PhD, RN Mendel E. Singer, PhD Peter DeGolia, MD, CMD Scott H. Frank, MD, MS v An increasing prevalence in deaths occurring within nursing homes has led to a growing concern surrounding quality issues in end-of-life (EOL) nursing home care. In addition, prior research has failed to emphasize the importance of state tested nursing aides (STNAs) in providing this type of care. The purpose of this study was to examine quality issues in EOL nursing home care within the context of STNAs’ comfort in providing this care
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. A convenience sample of 108 STNAs from four nursing homes in the Cleveland, Ohio area used PDAs to provide answers to an audio questionnaire. Questions included emergent themes from the literature pertaining to EOL care in nursing homes, as well as materials from a national education initiative to improve palliative care. Findings demonstrated lack of comfort in discussing death with nursing home residents and their families and insufficient knowledge surrounding EOL decisions and certain types of EOL care. Overall, the level of comfort providing EOL care was found to be associated with STNAs’ perceived importance of EOL care, understanding of hospice, and spiritual well-being. JOURNAL OF HOSPICE AND PALLIATIVE NURSING v Vol. 12, No. 4, July/August 2010 255 Author Affiliations: Emma Nochomovitz, MPH, is Research Analyst, National Quality Forum, Washington, DC and Case Western Reserve University, Cleveland, OH. Maryjo Prince-Paul, PhD, APRN, AHPCN, FPCN, is Assistant Professor, Frances Payne Bolton School of Nursing, Case Western Reserve University, Cleveland, OH. Mary Dolansky, PhD, RN, is Assistant Professor, Frances Payne Bolton School of Nursing, Case Western Reserve University, Cleveland, OH. Mendel E. Singer, PhD, is Associate Professor, Department of Epidemiology and Biostatistics, Case Western Reserve University, Cleveland, OH. Peter DeGolia, MD, CMD, is Director, Center for Geriatric Medicine, University Hospitals Case Medical Center and Associate Professor, Family Medicine, Case Western Reserve University School of Medicine, Cleveland, OH. Scott H. Frank, MD, MS, is Director, Master of Public Health Program, Department of Epidemiology and Biostatistics, Department of Family Medicine, Case Western Reserve University, Cleveland, OH. Address correspondence to Emma Nochomovitz, MPH, National Quality Forum, 601 13th St NW, Suite 500 North Washington, DC 20005 (email@example.com). KEY WORDS end-of-life care hospice nursing aides nursing home I n recent years, the growth of the older segment of the population and the prevalence of chronic illness have led to increased institutionalization of the frail and elderly prior to their deaths. In particular, nursing homes have been identified as a place in which end-oflife (EOL) care is occurring with increasing prevalence, as 20% to 25% of deaths now occur in the nursing home setting.1 Given the increasing significance of EOL care within the nursing home setting, nursing homes are under increased scrutiny to provide quality care. This has led to the creation of nursing home specific measures of quality and outcomes. As a result, a growing body of literature highlights several concerns surrounding quality issues in EOL nursing home care. The purpose of this study was to examine quality issues in EOL care as they relate to the role of state tested nursing aides (STNAs), with a particular focus on the degree to which STNAs feel comfortable providing EOL care. v BACKGROUND Despite the significance of EOL care in nursing homes in the context of the growing elderly population likely to utilize EOL health services, there is evidence to suggest that it is not a topic that is widely understood or addressed by nursing home staff. According to Hanson et al,2 a focus group approach may have important implications for understanding the beliefs and practices among nursing home staff caring for dying residents. The study by Hanson and colleagues2 was conducted in two nursing home facilities. Participants included all nursing aides, nurses, or physicians working in either of these facilities, who were willing to volunteer their time to participate in 90-minute focus group sessions that focused on the care of dying nursing home residents.2 Focus group participants’ resulting recommendations for improved quality care at the end of life included four main categories, including changes in delivery of care, improved staff education and skills, addition of new services, and improved support of staff.2 These findings suggest that open discussion about death and dying can improve the quality of care at the end of life and offer several specific contributions to future efforts to improve quality of care in EOL nursing home care.
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Ersek et al3 echo the findings of Hanson and colleagues2 in their analysis of focus group interviews among licensed nursing staff and certified nursing aides (CNAs) at two nursing homes in the Pacific Northwest. This study addressed participants’ concerns and educational needs surrounding nursing home care at the end of life. Interviews were administered by three different investigators to a group of 15 licensed staff and 39 CNAs.3 Participants revealed major concerns surrounding symptom management, communication and interaction with patients, uncertainty and stress related to their role as a provider, discrepancies between different involved parties’ goals of care, time constraints, attachment to residents, and self-care needs as the most significant challenges to providing care to dying nursing home residents. Similarly, focus group participants from Wilson and Daley’s4 study of 155 members of nursing home staff and administrators and their perspectives on dying in long-term-care facilities also highlight improvement goals related to the individual role of providers (ie, communication), internal aspects of the nursing home environment (ie, private space), and factors external to the nursing home, such as regulatory requirements and reimbursement.4 A recurrent theme throughout the literature on EOL care in nursing homes identifies nursing assistant job stress as an inevitable characteristic of EOL care. Both Hanson et al2 and Wilson and Daley4 utilized focus groups to assess quality of care within nursing homes at the end of life, while simultaneously unveiling some of the emotional burdens placed on those caring for nursing home residents near the end of life. Hanson et al discovered that there were several factors unique to the type of care they provide that increased their experience of stress at work. For instance, lack of communication and coordination with hospitals, pressure to minimize staffing while maximizing profit, and the fact that they are caring for an increasingly frail and impoverished population were identified as particular barriers to providing the ideal setting for dying residents.2 Included in the body of knowledge pertaining to EOL nursing home care is the potential for research surrounding the use of hospice services to improve quality of care and reduce healthcare expenditures. According to the National Quality Forum, hospice care is defined as ‘‘a service delivery system that provides 256 JOURNAL OF HOSPICE AND PALLIATIVE NURSING v Vol. 12, No. 4, July/August 2010 palliative care for patients who have a limited life expectancy and require comprehensive biomedical, psychosocial, and spiritual support as they enter the terminal stage of an illness or condition.’’5 Miller et al6 reported on hospice care within nursing homes in five different states. The study compared the experience of hospice and nonhospice nursing home patients based on Minimum Data Set data, drug prescriptions, and Medicare claims.6 The authors cite several advantages experienced by hospice versus nonhospice nursing home residents. For instance, hospice patients were found to be significantly less likely to be hospitalized in the last 30 or 90 days of life, as well as within the last 6 months of life.6 Miller et al6 also conclude that more frequent pain detection among hospice patients was an indication of more thorough pain assessment among hospice patients compared with their nonhospice counterparts. Miller et al7 found further support for the benefits of hospice in their comparison of analgesic pain management among hospice and nonhospice nursing home patients. In this retrospective cohort study of more than 800 nursing homes in five different states, hospice residents were found to be twice as likely as nonhospice residents to receive regular treatment for daily pain.7 Findings surrounding the potential benefits of hospice utilization highlight the need to integrate EOL principles, such as those promoted in hospice, into the nursing home setting. Given the degree to which STNAs interact at a personal level with nursing home residents and their families, it follows that awareness among STNAs surrounding the principles of hospice and the mechanisms by which hospice may be accessed have the potential to benefit patients’ experience of nursing home care. v PROBLEM AND PURPOSE OF STUDY Research demonstrates that there is a need for increased attention to STNAs, as they play an integral role in EOL care in a nursing home setting and provide up to 90% of direct care to nursing home residents.8,9 Current research fails to provide quantitative data on the needs of STNAs responsible for EOL care, as well as their perceptions surrounding quality issues in EOL nursing home care. Thus, the purpose of this study was to describe the experience of STNAs in providing EOL nursing home care through a survey-based quantitative study. More specifically, this study addresses a gap in the relevant literature on EOL nursing home care focused on STNAs’ perceived level of comfort with providing EOL care. The primary aim of this study was to examine the degree to which STNAs perceive themselves to possess the necessary training, skills, and knowledge to feel comfortable providing quality care at the end of life. A secondary aim was to examine STNAs’ comfort with the provision of EOL care in nursing homes as it relates to job satisfaction, spiritual well-being, and the degree to which STNAs feel supported by their working environment. v METHODS The present study included a convenience sample of STNAs from four nursing homes in Cleveland, Ohio. The STNAs who worked for a hospice were excluded from participation. Institutional review board approval was obtained from Case Western Reserve University. A sample of 380 STNAs from four nursing homes was approached to participate. Following informed consent and face-to-face enrollment, 108 participants (28%) completed the investigator-developed questionnaire consisting of 62 questions. Data were collected pertaining to demographic information, personal characteristics, and several variables pertaining to STNAs’ overall experience with and perceived understanding of EOL care. Demographic information included age, education, and work-related information, including how many years STNAs had been working with older adults in a nursing home and the number of classes they had taken related specifically to EOL care. The collection of more detailed demographic information was limited in an effort to preserve the anonymity of survey respondents. Information pertaining to personal characteristics was collected surrounding individuals’ job satisfaction, spiritual well-being, and the degree to which STNAs felt they were supported by their coworkers. Job satisfaction was measured using a 4-component scale created by the author, after review of existing job satisfaction literature. The internal reliability for this instrument was adequate (Cronbach’s ! = .84). Spiritual well-being was evaluated with the Brief Assessment of Spiritual Insight and Commitment questionnaire.10 This instrument included 14 items measuring the domains of faith, community, control, meaning, peace, and love and has demonstrated a high degree of internal reliability (Cronbach’s ! = .83) when utilized to evaluate spirituality and religiosity within the primary care setting.10 Support from coworkers was measured by a single question asking STNAs whether they felt ❖ ❖ ❖ ❖ ❖ JOURNAL OF HOSPICE AND PALLIATIVE NURSING v Vol. 12, No. 4, July/August 2010 257 they worked in an atmosphere where they were supported by their coworkers. The STNAs’ experience with EOL care was measured primarily by an investigator-developed instrument, which included several components of EOL care, as identified by the geriatric End-of-Life Nursing Education Consortium (ELNEC) curriculum.9 The geriatric ELNEC curriculum is focused on long-term-care settings with detailed sections pertaining to the role of STNAs in EOL care.9 In conjunction with material from the ELNEC curriculum, the investigator conducted a review of scientific literature pertaining to EOL nursing home care from the perspective of STNAs and other nursing home providers. As a result, the investigator developed the ‘‘Comfort Scale’’ in which STNAs were asked to respond to whether they felt comfortable with their role in providing 12 specific types of care. The STNAs’ perspectives on the importance of EOL care were measured according to how important they felt each of the 12 components of the Comfort Scale was in their provision of care. Reliability for these investigator-developed scales ranged from 0.88 to 0.89. The STNAs’ experience with EOL care was also measured using a dichotomous variable that assessed STNAs’ perceived understanding of hospice and palliative care as different models of EOL care delivery. Statistical Analyses SPSS, version 15.0 (SPSS Inc, Chicago, IL), was used to analyze the data. Descriptive statistics were analyzed as either dichotomous variables or as part of individual scales. In addition to the descriptive statistics, potential associations with the outcome variable, comfort providing EOL care, were explored. It was hypothesized that the following study variables might be associated: perceived importance of EOL care skills, understanding of hospice, understanding of palliative care, job satisfaction, spiritual well-being, and support from coworkers. These associations were tested using a multivariable linear regression model. The model was adjusted for age, education, experience with older adults, EOL education, and EOL care experience as potential confounders. A significant statistical test was considered if P G .05.
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Participants and Data Collection Process Audio technology was used to create a spoken version of the questionnaire that could be administered using a PDA. The process of transforming the original questionnaire into a version that was accessible to PDAs involved pairing the audio recording of each question from the investigator-developed questionnaire with its appropriate answer using SEDCA software (Don’t Pa..Panic Software, Lyndhurst, OH). PDAs served to overcome several limitations of paper-based questionnaires, such as reliance on respondents’ reading comprehension and understanding of the English language.11 In addition, PDAs have been demonstrated to increase respondents’ perception of privacy in their answers, which was useful in addressing potentially sensitive information regarding STNAs’ perceptions of EOL care.11,12 Table 1 Demographic and Job Characteristics Variable Percentage n Age, y 18-25 21.6 22 26-35 24.5 25 36-45 24.5 25 46-55 20.6 21 56+ 8.8 9 Education Less than high school 2.8 3 Graduated high school or GED 43.9 47 Some college or technical school 46.7 50 Graduated college 6.5 7 Years working with older adults in nursing home G1 10.2 11 1-3 20.4 22 4-7 24.1 26 8-11 11.1 12 12+ 34.3 37 Times worked with dying residents within last 3 y 0 9.3 10 1-4 31.5 34 5-8 19.4 21 9+ 39.8 43 EOL care continuing education classes within last 3 y 0 16.8 18 1 13.1 14 2 15.0 16 3 15.9 17 4+ 39.3 42 Abbreviations: EOL, end-of-life; GED, general equivalency diploma. 258 JOURNAL OF HOSPICE AND PALLIATIVE NURSING v Vol. 12, No. 4, July/August 2010 v RESULTS Demographics Demographic information is reported in Table 1. The sample’s age range was 18 to 25 years, and 46% of respondents reported some college or technical school training. More than one-third of the sample (34.3%) has at least 12 years of job experience in nursing homes; 39.8% of STNAs expressed having cared for a dying resident during recent work experience at least nine times. Similarly, nearly 40% of participants noted having attended at least four continuing education classes related to EOL care in recent years. STNA Comfort With EOL Care Table 2 displays each item from the Comfort Scale. Each item lists the degree to which STNAs agreed that they felt comfortable with their role in terms of a particular skill or aspect of care. Each individual component of this scale was examined based on two groups of responses, including ‘‘strongly agree’’ and ‘‘did not strongly agree.’’ This analysis strategy was based on the assumption that respondents who did not strongly agree still had some doubt about their understanding of the service in question. The items in which fewer respondents strongly agreed represent aspects of care in which STNAs expressed less comfort or confidence. In particular, only 14% strongly agreed that they felt comfortable talking about death. While the majority of STNAs did express strong agreement with their comfort in providing assistance with activities of daily living, observing symptoms that may occur near the end of life, and providing care at the time of death, less than half of STNAs expressed as much comfort with the nine other aspects of care about which they were questioned. Only a third of STNAs strongly agreed that they felt comfortable in their knowledge of EOL decisions about care, working with a the body of a deceased resident, or supporting a resident experiencing nausea or vomiting. In a further effort to describe STNAs’ level of comfort with the provision of EOL care, the Comfort Scale was used as the dependent variable in a multivariable linear regression model (Table 3). The model showed that several of the study variables were significantly associated with comfort giving EOL care. Greater perceived importance of EOL care skills (B = .161, P = .015), understanding of hospice (B = .365, P = .006), and spiritual well-being (B = .359, P = .005) were all associated with increased comfort providing EOL care. Understanding of palliative care, job satisfaction, and support from coworkers were not associated with comfort providing EOL care. These analyses were adjusted for age, education, experience working Table 2 Comfort Scale Components: ‘‘I Am Comfortable With My Role inI’’ Variable Percentage n Talking about death Do not SA 86.1 93 SA 13.9 15 Being present at time of death Do not SA 62 67 SA 38 41 Working with body of deceased Do not SA 65.7 71 SA 34.3 37 Supporting resident with delirium Do not SA 54.6 59 SA 45.4 49 Supporting resident with noisy respirations Do not SA 59.3 64 SA 40.7 44 Supporting resident with nausea/vomiting Do not SA 69.4 75 SA 30.6 33 Supporting resident with emotional discomfort Do not SA 61.1 66 SA 38.9 42 Providing assistance at EOL Do not SA 39.8 43 SA 60.2 65 Observing EOL symptoms Do not SA 46.3 50 SA 53.7 58 Observing EOL treatment response Do not SA 57.4 62 SA 42.6 46 Providing care at time of death Do not SA 45.4 49 SA 54.6 59 Being aware of treatment decisions at EOL Do not SA 68.5 74 SA 31.5 34 Abbreviations: ADLs, activities of daily living; EOL, end-of-life; SA, strongly agree. ❖ ❖ ❖ ❖ ❖ JOURNAL OF HOSPICE AND PALLIATIVE NURSING v Vol. 12, No. 4, July/August 2010 259 with older adults, EOL education, and EOL care experience. These findings are strengthened by R2 = 0.471, which suggests that nearly 50% of total variance in STNAs’ comfort with EOL care was explained by this model. Additional Findings The findings pertaining to each of the variables included in the linear regression model shown in Table 3 are outlined in this section. The STNAs’ overall job satisfaction, spiritual well-being, and perceived importance of EOL care were analyzed according to three categorical responses, including low, moderate, and high. The boundaries for the low and high response categories were established using the following formula: mean T [(1/2)] SD. Based on these categories, approximately 19% of STNAs rated themselves having low job satisfaction, whereas 42% identified themselves as highly satisfied with their job. Less than half of STNAs rated themselves as having high spiritual wellness (41.3%). Forty-two percent of STNAs demonstrated a high level of agreement with the importance of specific aspects of EOL care as identified by the ELNEC curriculum. Among the most important were the abilities to observe and report EOL symptoms, provide care at the time of death, and provide support for residents with emotional discomfort. Understanding of hospice and palliative care was analyzed as dichotomous variables, in which 66 respondents (61.1%) strongly agreed that they understood the meaning of hospice and when hospice may be needed, while only 26 respondents (24.3%) strongly agreed that they understand the meaning of palliative care and when it may be needed. Similarly, support from coworkers was analyzed as a dichotomous variable and demonstrated that 88% of STNAs strongly agreed that they worked in an atmosphere in which they were well supported by their peers. v DISCUSSION The STNAs’ comfort with providing EOL care varied widely. In terms of the skills and knowledge outlined by the ELNEC curriculum as important to the role of nursing aides in the provision of EOL care, 40% of STNAs rate themselves as having a high level of comfort, and approximately 30% rate themselves as experiencing a low level of comfort with these aspects of EOL care. The results indicate that there is opportunity for improvement in STNAs’ overall level of comfort with EOL care. There is evidence to suggest that STNAs’ comfort providing certain aspects of EOL care may translate into the quality of care provided. For instance, the fact that less than 14% of STNAs strongly agreed that they feel comfortable talking about death has important implications based on findings from existing literature that difficulty talking about death hinders the ability of nursing home providers, residents, and families to communicate openly and honestly about death.13 This finding and others pertaining to areas in which STNAs are less comfortable providing EOL care are important for targeting areas in which improved nursing assistant training or education is necessary. In addition to talking about death, the fact that only 42.6% respondents feel particularly comfortable observing and reporting symptoms that may occur at the end of life suggests that this is another area of care requiring more careful consideration in efforts to improve the quality of EOL nursing home care. Moreover, this study provides evidence to suggest that efforts to improve STNA comfort with EOL care may find success in independently targeting STNA understanding of hospice care or spiritual well-being. There are both strengths and limitations within this study that may serve as lessons for future research. The strengths of this study include its attention to a relevant and timely topic, as well as an underrecognized member of the interdisciplinary care team: the Table 3 Linear Regression Model for Comfort Providing EOL Carea Study Variable Coefficient (B) P Comfort providing EOL care (dependent variable) 1.564 .000 Perceived importance of EOL care skills .161 .015 Understanding of hospice .365 .006 Understanding of palliative care .187 .162 Job satisfaction j.078 .734 Spiritual well-being .359 .005 Support from coworkers .082 .687 a Controlled for age, education, experience working with older adults, EOL education and EOL care experience. Abbreviation: EOL, end-of-life. 260 JOURNAL OF HOSPICE AND PALLIATIVE NURSING v Vol. 12, No. 4, July/August 2010 STNA. This research also provides a promising foundation for future research about EOL nursing home care and nursing aides. In particular, it serves as a potential resource for building targeted educational curricula to improve STNA education about specific aspects of EOL care. Another strength of the study is the use of audio PDA for data collection as this segment of the workforce population has potential difficulty with reading comprehension. The reading comprehension issue may be why current literature on STNAs tends to focus on qualitative methods. The investigator reported that the PDA mode of data collection was well received by STNAs, which suggests that this method may be useful in future research. This study is limited by the representativeness of its sample. The study participants’ level of education and job experience were not consistent with national data. Data from the 2006 Annual Social and Economic Supplement to the Current Population Survey, which indicate that 65% of nursing aides working in nursing homes have less than a high-school degree, provide evidence of the level of education within this representative of STNAs at the national level.14 Furthermore, the four nursing homes chosen for this study included administration that embraced the hospice philosophy and were more likely to educate their STNAs about comprehensive EOL care. Despite these limitations, the study has important clinical implications as there is a dearth of quantitative analysis of the experience of STNAs in providing EOL care. This study demonstrated the need for more education directed toward increasing STNAs knowledge and skill in providing EOL care. Nursing homes can use the instruments from the current study to assess STNAs’ knowledge, comfort, skill, spiritual well-being, understanding of models of EOL care, and perceived importance of EOL care to measure the needs of their current staff. Nursing homes can then individualize education and support of their STNA staff in this important area. The study also indicated a need for emotional support. Hospice programs can collaborate with nursing home staff and provide support group sessions for STNAs who provide 90% of the direct care. Interdisciplinary teams need to include STNAs in the planning of care for patients at the end of life. More research pertaining to this subject is necessary. Research that includes larger samples from different states will help define the needs of STNAs to empower them to provide quality EOL care. The National Nursing Assistant Survey, the first study of STNAs at the national level, represents an example of a large-scale resource that may have the potential to provide insight to the experience of STNAs working in nursing homes.15 In its current form, this survey does not aim to collect information about nursing aides’ experience providing care for dying nursing home residents, yet it serves as a foundation for doing so.16 Additional areas for future research include the relationship between nursing assistant education and nursing home resident and/or family-rated quality of care, as well as the role of nursing assistant education and training in providing nursing aides with the necessary coping strategies to improve job satisfaction and spiritual well-being and decrease job turnover. Varying beliefs about EOL care based on nursing aides’ race, ethnicity, or religion may also provide insight into this area of research. v CONCLUSION As the result of an aging population in which people are living longer with chronic illness and dying more frequently in nursing homes, quality issues in EOL nursing home care are inevitably integral to the future of healthcare delivery. Increased attention to this area of research has the potential to save healthcare dollars and allow individuals to die comfortably and with dignity. End-oflife nursing home care cannot be examined in detail without taking into consideration the most frontline providers of this type of care: the STNAs. The STNAs are a growing segment of the nursing home care team, and this study has identified that there is a need for consideration of their educational resources, as well as the support systems that are available to them in terms of spiritual well-being and work environment. References 1. 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Cleveland, OH: Case Western Reserve University; 2003. 12. Borawski E, Trapl E, Stork P, et al. Use of audio-enhanced personal digital aides for school-based data collection. J Adolesc Health. 2005;37:9. 13. Smith K, Baughman R. Caring for America’s aging population: a profile of the direct-care workforce. Mon Labor Rev. 2007:7. 14. Jaspana H, Flisherb A, Myerc L, et al. Brief report: methods for collecting sexual behaviour information from South African adolescentsVa comparison of paper versus personal digital assistant questionnaires. J Adolesc. 2007;30:7. 15. Statistics NCHS. National Nursing Home Survey. http://www. cdc.gov/nchs/nnas.htm. Accessed April 20, 2009. 16. Squillace M, Rembsburg R, Bercovitz A, Rosenoff E, Branden L. An introduction to the national nursing assistant survey. Vital Health Stat. 2007;44:54. 262 JOURNAL OF HOSPICE AND PALLIATIVE NURSING v Vol. 12, No. 4, July/August 2010