Journal of Gerontological Nursing

ASSESSING THE Educational Needs and Concerns OF NURSING HOME STAFF REGARDING End-of-Life Care

Mary Ersek, PhD, RN; Beth Miller Kraybill, BSN, CRNH; Jennifer Hansberry, BSN, RN

Abstract

ABSTRACT

The purpose of this study was to explore and describe the educational needs and concerns of licensed nursing staff and certified nursing assistants (CNAs) regarding end-of-life (EOL) care. Focus group interviews were conducted at two nursing homes in the Pacific Northwest. Separate interviews were conducted for licensed staff (RNs and LPN/LVNs) and CNAs. A total of 15 licensed staff and 39 CNAs participated in the study. Interviews were transcribed and themes were extracted through consensus reached by three investigators. The major concerns of these nursing home staff focused on symptom management, communication and interactions, goals of care, role delineation, time constraints, self-care needs, and emotional attachment to residents. Although both groups described similar themes, specific issues within each topic often were different for licensed staff and CNAs. These findings can be used to guide the design of educational programs aimed at assisting nursing home staff in providing high level end-of-life care.

Abstract

ABSTRACT

The purpose of this study was to explore and describe the educational needs and concerns of licensed nursing staff and certified nursing assistants (CNAs) regarding end-of-life (EOL) care. Focus group interviews were conducted at two nursing homes in the Pacific Northwest. Separate interviews were conducted for licensed staff (RNs and LPN/LVNs) and CNAs. A total of 15 licensed staff and 39 CNAs participated in the study. Interviews were transcribed and themes were extracted through consensus reached by three investigators. The major concerns of these nursing home staff focused on symptom management, communication and interactions, goals of care, role delineation, time constraints, self-care needs, and emotional attachment to residents. Although both groups described similar themes, specific issues within each topic often were different for licensed staff and CNAs. These findings can be used to guide the design of educational programs aimed at assisting nursing home staff in providing high level end-of-life care.

Nursing homes (NHs) provide end-oflife (EOL) care to many older adults. According to recent estimates, approximately 17% of all death in the United States occur in NHs. As the number of elderly individuals grows, NHs will provide increasingly more EOL care (Institute of Medicine, 1997).

Although NHs are a common setting for death, providing EOL care is challenging in this environment. For example, the divergent economic and care goals between long-term care and hospice care are problematic (Watt, 1997). Other constraints in providing care to dying NH residents include lack of availability of "stai" pharmacy orders and regulations that greatly increase the paperwork of NH clinicians (Ferrell, 1992).

Symptom management, a key component of EOL care, often is deficient in NHs. Studies have shown that pain in NH residents often goes unnoticed or untreated (Bernabei et al, 1998; Ferrell, Ferrell, & Osterweil, 1990; Sengstaken & King, 1993). Without expert, aggressive amelioration of symptoms, high quality care for those who are dying is impossible.

Examining this issue from a different perspective, two studies documented family members' dissatisfaction with EOL care in NHs (Hanson, Danis, & Garrett, 1997; Maccabee, 1994). In both studies, bereaved family members described what they saw as an inability of NH staff to provide specialized, palliative care. They also expressed the belief that residents' suffering increased as a result of this deficiency in care.

Families' impressions that NH staff may be ill-prepared to provide optimal care to dying residents has been documented in several studies that found serious deficits in health care providers' knowledge of pain management and other facets of EOL care (Ferrell, McCaffery, & Rhiner, 1992; Institute of Medicine, 1997; McCaffery & Ferrell, 1991). Although deficiencies have been found across many health care settings, there is some evidence that the educational needs of nurses in long-term care are greater than those in other settings. Gibbs (1995) found NH nurses were less likely to have had continuing education courses about pain management and palliative care than nurses in acute care settings. In addition, NH nurses were less able to identify treatment options for patients in pain. Gibbs also reported that contact with physicians was limited in NHs. Nurses in this setting expressed frustration at the poor communication and lack of collegiali ty with physicians, which they felt negatively influenced patient care and led to feelings of isolation. In general, NH staff members were less cognizant of resources, such as library privileges, available to them. Identifying similar issues as Gibbs, other authors have reported nurses in long-term care settings were significantly less knowledgeable about pain management than their counterparts in oncology, even after controlling for the effects of education (Ryan, Vortherms, & Ward, 1994).

In addition to licensed staff, certified nursing assistants (CNAs) also are involved actively with care of dying residents. The CNAs provide approximately 90% of personal care in NHs, thereby serving as the primary caregivers in this setting (Beck, Ortigara, Mercer, & Shue, 1999; Waxman, Carner, & Berkenstock, 1984). Despite their important role, they have limited training for their complex, stressful jobs. Orientation to facilities often is inadequate, salaries are low, and respect af -forded to CNAs is lacking (Beck, Ortigara, Mercer, & Shue, 1999; Breedlove, 1993; Caudill & Patrick, 1991-92; Constans, 1989; Helmer, Olson & Heim, 1993; Maas, Buckwalter, & Specht, 1996).

Recognizing the important roles of CNAs and licensed nursing staff, Wilson and Daley (1998) examined NH staff and administrators' experiences in providing EOL care. The major issue voiced by participants was attachment to residents and the factors that influenced attachment and quality of care. Attachment was the strong emotional bond that developed between staff and residents, causing staff to view themselves as surrogate family to residents. Attachment enhanced the quality of care provided, but also increased the sense of loss experienced when residents died. Other factors that influenced care or caused concern included difficulties in communicating with dying residents and their families, lack of knowledge about symptom management, and lack of time. Forces external to the NH that influenced the quality of care were shorter NH stays, unrealistic family and public expectations, poor public image of NH care, and burdensome regulations and paperwork.

STUDY PURPOSE

Despite the important role that NHs play in providing EOL care for elderly individuals, research suggests the care for the dying in this setting can be improved. Licensed nursing staff and CNAs comprise the core of the NH team, yet few studies document the needs and concerns of these vital health care providers as they care for dying residents. The purpose of this study was to use focus group methodology to explore and describe the educational needs and concerns of licensed nursing staff and CNAs regarding EOL care. It was conducted as one of three studies examining the needs and concerns of NH staff in caring for the dying. The other two studies included a NH staff needs assessment survey and interviews with NH administrators. These studies have been described elsewhere (Ersek, Kraybill, & Hansberry, 1999). Together, the studies provided different views and insights regarding the needs of NH staff in providing EOL care. Data from all three studies were used to design an educational intervention to improve EOL care in NHs.

METHODS

Data for this study were collected using focus group interviews. This methodology was chosen because the interactive nature of group discussion promotes exploration and elaboration of issues that is not always possible with individual interviews. Although the moderator guides the discussion with questions and comments, the group is more likely to direct the conversation, thus capturing ideas and issues important to the participants. Morgan (1997) explained that focus groups are best used when group members are motivated to participate actively and openly in discussing the topic. A review of the literature and discussions with NH administrators and staff suggested NH employees would be very interested in talking about this subject. The relative ease of conducting the interviews and the efficiency of gathering data were two additional reasons for choosing this methodology (Morgan, 1997).

Sample

The convenience sample was recruited from two nursing homes. One facility is a nonprofit institution, affiliated with the United Methodist association. A for-profit company owns the other NH. The two NHs are similar in size, each employing approximately 100 licensed nurses and CNAs. The facilities agreed to participate in the interviews as part of their commitment to providing quality care. Human subjects' approval was obtained and participants were assured their responses would be confidential.

A total of four focus groups were conducted, two at each facility. Separate meetings were held for CNAs and licensed staff to encourage open discussion and to elicit the different needs of each group. Each focus group had between 5 and 16 participants. The total sample was comprised of 39 CNAs and 15 licensed staff. Participants were diverse in terms of age, ethnicity, and experience in long-term care. Four participants were relatively new to health care or long-term care, having less than 1 year's experience in NHs. Several had more than 10 years' experience in long-term care, although often at several facilities. Over 50% of the CNA groups were non-European American, and almost half of the licensed staff groups were composed of members of ethnic minorities.

Procedure

Times and places of the focus groups were announced at staff meetings and in flyers circulated throughout each facility. Meetings were held in the early afternoon to maximize attendance of staff from more than one shift. Efforts also were made to assist staff members working at the time of the interview to attend the focus group, although heavy workloads precluded some staff from participating.

Table

TABLEEDUCATIONAL NEEDS AND CONCERNS REGARDING END-OF-LIFE CARE

TABLE

EDUCATIONAL NEEDS AND CONCERNS REGARDING END-OF-LIFE CARE

Table

TABLEEDUCATIONAL NEEDS AND CONCERNS REGARDING END-OF-LIFE CARE

TABLE

EDUCATIONAL NEEDS AND CONCERNS REGARDING END-OF-LIFE CARE

The interview began with a brief explanation of the purpose and procedures of the meeting. Participants were then asked to discuss their experiences of caring for dying residents. They were also asked to describe those areas of care about which they felt uncomfortable or unprepared. The flyer announcing the focus group also was reviewed. The flyer listed topics such as symptom management, communication, spirituality, and resident and family decision-making as specific areas the group might want to discuss.

Interviews lasted from 45 to 60 minutes. All sessions were audiotaped, and extensive notes were taken by one of the investigators (BMK) during each interview. This investigator, who also transcribed audible portions of the tapes, identified initial themes. Following the identification of the initial codes, all three investigators listened to the tapes together to confirm and refine the themes, and to add codes that had not been described in the first step of analysis. All three investigators reached consensus in identifying the themes.

FINDINGS

Participants identified several major needs and concerns about providing EOL care in NHs. These centered on symptom management, communication and interactions, goals of care, role delineation, time constraints, self-care needs, and emotional attachment to residents. Although both the licensed staff and CNA groups discussed similar themes, specific issues within each theme often were different for each group (Table).

Symptom Management

Several aspects of symptom management were identified as challenges. In general, CNAs were comfortable with their roles in observing and reporting pain and in providing some basic nonpharmacologic therapies such as distraction. Similarly, licensed staff expressed confidence with pain assessment and basic pain management. However, licensed staff expressed a need for additional knowledge and skills about managing pain in cognitively impaired residents. Also, nurses wanted to increase their understanding and skills regarding complex pain management regimens incorporating alternative routes and adjuvant medications.

In addition to wanting to enhance their skills, several licensed staff described many frustrating situations in which family, physicians, and pharmacists stymied nurses' efforts to relieve dying residents' pain. As one nurse stated:

The thing that's really frustrating is where [sic] you know the person is having a pain issue, and it's their end of life and you cannot get pain management ordered because of their doctor. I have been in situations where I have changed doctors on a person's deathbed to get what I want. It's frustrating to have to deal with a person who's not got it up here [pointing to her head] as far as taking care of somebody when they're dying. Nobody should have to die in pain!

Other licensed staff added that families', pharmacists', and physicians' fears of addiction were powerful deterrents to adequate analgesia. As one nurse related,

as much as you talk to them [families] and tell them it's [addiction] not a concern, they've seen or they've heard other experiences and they don't want it [addiction] to happen.

Despite the advocacy that many licensed staff exercised in ensuring strong analgesics were available to dying residents, a few nurses verbalized their discomfort with administering "the last dose" of narcotic to a dying patient. Although they realized that opioid use was appropriate and necessary for many residents at the EOL, the fear of hastening death made them uneasy about providing these medications when residents were actively dying.

Communication and Interactions

Communication and difficult interactions was a recurring theme and involved staff, families, residents, and physicians. Licensed staff had difficulties in talking with physicians, whereas CNAs were distressed in some of their interactions with families, residents, and licensed staff.

Some licensed staff described frustrating communication with physicians. Especially difficult were the telephone conversations to physicians regarding resident needs in which the nurse's assessment findings and suggestions for care were disregarded. One nurse stated that physicians seemed to listen better to the hospice nurses:

They [hospice nurses] do make an effective go-between with some doctors. When you're seeing that there's pain that needs to be addressed and they can get in there and get it addressed right away. We don't let them [the doctor] know that we told the hospice nurse that we want the order.

While licensed staff had difficulties communicating with physicians, several CNAs described similar feelings about working with licensed staff. Throughout the interviews, CNAs spoke positively about their own worth as team members in the care of dying residents. They did not always feel, however, that their contributions were appreciated and respected by licensed staff. One CNA reported,

....when you're a CNA you don't get much say. You can tell them [licensed staff] what you feel and you can tell them what you like, but 9 times out of 10 you aren't listened to.

Interactions with families provided other difficulties for CNAs. Although many interactions with families were positive, sometimes CNAs felt maligned by residents' family members. As one CNA commented:

There are those families who are always mad. They always think we don't care, but they don't know that we care much more than [they think] ...That really hurts... all day and night we bathe them, we feed them, we do everything, but nothing is good enough, nothing is clean enough. I think a lot of time (sic) they forget you don't have just...that one patient, (but) you have seven others. Some families don't realize that.

The CNAs emphasized repeatedly that they often had close relationships with the resident and that they cared deeply for residents. Despite their affection and devotion, however, CNAs sometimes felt unappreciated by families, which frustrated them especially in situations where the family seldom visited.

Certain questions and comments from dying residents and their families also disturbed CNAs who simply felt unprepared to respond. Comments from residents such as "I feel like I'm going to die" and "Why won't God take me?" or questions from family members, including, "He [the resident] isn't in pain, is he?" bewildered CNAs who were unsure about how to respond appropriately. Some participants felt as though they could address some comments, but doing so would be perceived as stepping outside the boundaries of the CNA role, thereby leading to possible reprimand from supervisors. These communication issues seemed to indicate ambiguities regarding roles and responsibilities in long-term care.

Role Delineation

Licensed staff and CNAs seemed to perceive having relatively narrow role boundaries when providing EOL care. Knowing when it was appropriate or inappropriate to stretch those perceived boundaries caused distress for both CNAs and, to a lesser extent, licensed staff. For example, unclear role boundaries also provided discomfort for CNAs communicating with residents and families. The CNAs were uncertain about what they could and could not appropriately discuss. For example, one participant reflected:

And then we're not really allowed to speak about it [goals of care]. It's the licensed staff who do. So you know they [the family] come at us and we're supposed to just shut up and direct them to the licensed staff. But really we are the ones in there all the time. They do corner you - you're the one always in there and they come at you.

Two licensed staff discussed similar unease when discussing spiritual matters with residents. Although they both felt that the residents wanted and needed to discuss spiritual concerns, they also implied that in the NH, the chaplain had the responsibility for initiating and conducting these discussions. One licensed staff member commented that she discussed spiritual issues with dying residents and added, "I don't care if I do get in trouble for it."

Goals of Care

Defining patient goals and honoring goals for care was identified as a troublesome area. Families' or residents' choice of a "full code" option distressed many licensed staff, who argued that resuscitating residents was inappropriate and caused unnecessary suffering. Some participants thought that families and residents would seldom choose the "full code" option if they understood better the possible consequences of that choice. Unfortunately, some licensed staff also voiced discomfort in presenting clear information about code status. As one nurse said,

In dealing with No Codes, the written statement is something that's new for me. When I trained, such things didn't exist, so I haven't quite found the verbiage that gets me what I want to say.

Uncertainty about the information residents and families were given about EOL choices also existed. In one case, the nurse discussed her own confusion regarding a discussion she had with a resident and family regarding code status and hospice. It was unclear to her whether the resident's and family's confusion about prognosis and choices stemmed from a lack of communication between resident and physician, or reflected the use of denial as a coping mechanism on the part of the resident and family.

In addition to feeling uninformed about previous discussion of goals, nurses and CNAs talked about conflicts with family members that sometimes occurred regarding goals of care. For example, family members might request life-prolonging or life-saving care that conflicts with what staff believes to be the resident's wishes. One participant described the friction in this way:

The resident is saying, "I want to die," and you know that they really feel that. Yet the family member doesn't want to let go. That angers me.

Another situation that caused stress for staff members were differences of opinion among family members regarding goals for care.

The CNAs also described situations in which they and the licensed staff held different views about the goals of care. Several CNAs described situations in which they did not understand why terminally ill residents were required to get out of bed and go to the dining hall or participate in other activities. As one participant stated:

We're colleagues. And when you know they're [the resident] in pain and they [licensed staff] just stand there, they're like oh no, just get them up.' What happened to residents' rights? They have the right to stay in bed if they want to stay in bed. Unless they have a spokesperson, a family member, saying they don't want to get up, they have to get up. Sometimes it's almost cruel. I would resent it if it were my mom.

Other CNAs recounted experiences they had when residents died shortly after stressful activities, leaving the aide feeling confused and guilty about their role in the death.

The CNAs also expressed confusion about the goals of palliative or hospice care. Three participants indicated that hospice care to them meant that "nothing more could be done" and resulted in less, rather then additional, services and care. In some cases, EOL care also included the withdrawal of certain therapies such as tube feeding, which brought great distress for some CNAs.

Time Constraints

Thematic elements regarding lack of sufficient time to spend with residents were voiced repeatedly. Nurses verbalized frustration and guilt when discussing the unmet desire to spend time with dying residents. One nurse explained: The thing that for me is one of the biggest struggles is being able to spend what I feel is a good enough amount of time [with the resident]. Because so many of our residents don't have anybody and I find that to be so awful, that I want to - I have to - be in there with them, and talk to them, pray with them, and whatever. Because I think it's so important.

One CNA described this painful situation:

I was so busy and the workload was so much, that it had been a little while since the resident had passed away [before it was noticed]. I just didn't have the time to go in and keep checking. That hits real hard...

Several participants lamented the lack of "hugging time" for residents. A few participants identified that an important role for hospice is to decrease the amount of time that residents spend alone through numerous visits from hospice team members.

Attachment to Residents

The desire to spend more time with residents was in part related to the emotional attachment to residents that both licensed staff and CNAs experienced. In fact, attachment was a major theme raised multiple times in all the focus groups. Close ties with residents were mentioned as a major factor that brought meaning and satisfaction to their work. Several participants talked at length about feeling they were "family" to residents, especially to those residents who had no close relatives. Attachment to residents affected every aspect of care, including symptom management and consideration of treatment goals.

Although attachment engendered positive feelings about residents and work, it proved to be a burden as well. Inability to relieve EOL symptoms, being uncertain of residents' choice about care, and feelings that residents' wishes were not honored caused great distress, given the strong connections that staff felt for residents. It also made staff sensitive to their limitations in EOL care. As one licensed staff member commented:

My biggest problem with EOL issues is just a personal one. If you get attached to that person, it's hard to let go. I don't know if it's hard for anyone else, but when I'm really attached to that person, I always second guess myself. I wonder if there's something I could have done-something better I could have done for them. To make their passing easier on them. Or to keep them from passing on. I always do that. I don't know why.

Attachment to residents also increased the grief that staff feels at the death of a resident:

Sometimes it's really hard to talk about it because it sometimes, it feels like you belong to that resident...like you are family. You cannot help it. You see them every day, every day you are with them. Then when something happens to them you are feeling very attached to them. It's very hard.

Another CNA added, "...when they pass away, it will stay in your heart. It will take time before you heal."

Self-Care Needs

The powerful feelings created by attachment to residents could not always be addressed at work. There were no formal grief support mechanisms in either of the facilities outside of memorials and religious services for the deceased. When queried about staff support and self-care, one participant responded,

There's a certain level of being desensitized to it. You know, to where you will feel their pain but you're not as subjected to the emotion.

Another added, "We just go home and work it out by ourselves."

The lack of formal staff support was unfortunate, given the intensity of feelings. In both CNA groups, several participants cried openly, remembering deceased residents with whom they had been close. One CNA expressed distress about how strongly she grieved at the death of some residents. At one point, she asked the investigators whether her intense feelings reflected an underlying mental illness.

DISCUSSION AND NURSING IMPLICATIONS

The findings from these focus group interviews help define the learning needs and concerns of licensed staff and CNAs providing EOL care in NHs. The major issues of both groups involved difficulties with pain management; stressful interactions with residents, families, and other health care providers; lack of clarity related to role expectations; uncertainty about goals of care; time constraints; and unmet needs for selfcare. Central to the entire experience of providing EOL care in the NH were the strong feelings of attachment that staff have for residents.

Nurses and CNAs elaborately described the development of strong, family-like relationships with residents. This attachment enhanced and provided meaning for their work, yet led to feelings of loss and grief upon residents' death. Lack of time and expertise to provide quality care to dying residents was often cited as a major source of stress. These findings echo those of Wilson and Daley (1998) who identified attachment as the core theme of their focus group data. The stress of dealing with frequent resident deaths described in this study is similar to those of O'Hara, Harper, Chartrand, and Johnston (1996), who reported that 42% of long-term care nursing staff were negatively affected by residents' deaths.

Despite the intense emotional burden of loss, participants in this study noted the paucity of opportunities for self-care and for attending to their own grief. Interestingly, when staff needs in these facilities were studied using a Likert format survey, few respondents identified self-care as a need (Ersek et al., 1999). In the focus groups, however, discussions about the close staff-resident relationships and the frequency of coping with resident death prompted several expressions of grief, including crying. Thus, staff may not even be fully aware of the emotional challenges of working with dying residents. Comments from several participants suggested that NH staff frequently suppress their feelings about loss, in part because they feel unable to express their emotion while at work. Given the toll that emotional attachment and multiple losses have on staff, NH administrators should develop and maintain institutional strategies to allow for the expression and support of emotional attachment to residents and guidance in self-care techniques. These self-care and support strategies can decrease burnout and help maintain a high level of patient care (Vachon, 1998; Zamborsky, 1996).

The needs of CNAs should be given special attention. Although CNAs in this study expressed a passion for their work and the residents, they also voiced many frustrations. Most notably, they felt that their hard work often was unappreciated by licensed staff and families, and their intimate knowledge of resident's habits and wishes was disregarded in planning residents' care. Researchers have found that providing on-the-job training and opportunities for CNAs to contribute to decisions about resident care decrease staff turnover, presumably by increasing job satisfaction (Caudill, 1989; Helmer et al., 1993; Tynan & Witherell, 1984; Waxman et al., 1984).

Pain and symptom management remains the hallmark of EOL care. Findings from this study suggest staff have confidence in providing basic pain relief techniques, and are supported by survey data on a larger group of NH staff (Ersek et al., 1999). This self- reported expertise, however, should be corroborated using knowledge and skills assessments. This step is important for two reasons. First, research evidence to date documents deficits in clinicians' knowledge, and the confidence that nurses' voiced may not reflect accurately their actual level of expertise (Gibbs, 1995; Ryan et al, 1994). Administrators and educators from the facilities in which the focus groups were held commented that expertise varied greatly among staff. They also perceived that some licensed nurses were lacking in basic skills (Ersek et al., 1999). Second, assessment of baseline knowledge allows teaching to be appropriately targeted to the learner's specific needs. In this way, staff members who do need more advanced skills will not be forced to sit through classes containing information that they already possess.

Licensed staff did identify several areas in which additional knowledge would be welcomed. These areas include managing symptoms in cognitively impaired residents, and planning and implementing complex pain regimens using adjuvant therapies and invasive delivery techniques. Education should focus on these topics.

Difficult interactions among staff, physicians, residents, and families were perceived as detrimental to the provision of EOL care and highly stressful for staff. Although the reasons for the conflict are multidimensional, it is likely that lack of communication skills contributes to conflicts and inadequate care. Adequate communication between licensed staff and physicians is especially important because of the infrequency of physician visits in the NH (Mitchell, 1982). Two licensed staff verbalized frustration at their inability to communicate effectively with individual physicians whom they viewed as disregarding and disrespectful. These nurses voiced confidence in their pain assessment skills, yet felt impotent to obtain necessary orders for pain management. Gibbs (1995) postulated that the ability to convey knowledge of pain and symptom management by NH nurses is essential in promoting appropriate responses by physicians to requests and suggestions. It is possible that some of the difficulties mentioned by participants stemmed from ineffective communication skills. For this reason, efforts should be aimed at not only increasing EOL clinical skills, but also in specific communication skills such as formulating succinct and pertinent telephone assessment reports (Green, 1997; Surdacki & Hoffpauir, 1997).

Communication skills also can enhance interactions among licensed staff, CNAs, residents, and families. One important topic that needs to be addressed clearly is clarifying code status and resident goals of care. Conflicts regarding goals of care were frequent sources of stress for staff. Licensed staff can be given opportunities to practice communicating about advance directives and other decisions about EOL care with residents and families. They should understand the legal implications of advance directives and durable power of attorney for health care, as well as the importance of describing options accurately and completely without imposing their beliefs on residents and families.

Another need of NH staff is to clarify appropriate responsibilities within their roles. The CNAs verbalized discomfort about their role in providing information to families and residents at the end of life. Their intense contact, especially with residents, made them frequent recipients of pointed, emotionally laden questions about care and experiences of dying residents. They often were unsure about how to respond and worried whether their responses exceeded the boundaries of their job. Licensed staff also expressed confusion about their role, and questioned whether or not they were prepared or permitted to address spiritual concerns. Regular, multidisciplinary discussions and case conferences about care for dying NH residents can help clarify roles and provide team support.

Findings show that ethical issues also need to be addressed regarding EOL care. Especially important are the issues of withdrawal of food and fluid and the rule of double effect when using opioids in dying patients. This study also suggests that residents' autonomy is a topic that should be included in these discussions, because residents' choices about activities and treatments caused distress for several CNAs. Mattiasson and Andersson (1995) also found patient autonomy causes many ethical conflicts in the longterm care setting, although they reported that aides were less likely to support patient choice. In contrast, this study found that many CNAs advocated for resident choices.

Unlike Wilson and Daley's (1998) findings in which hospice team members were viewed as "outsiders" who provided less consistent care than the NH staff, hospice personnel were highly valued by many participants in the current study. Nursing home staff appreciated the hospice nurses' skills and the added attention that hospice staff provided to dying residents. It should be noted that many of the positive comments from participants focused on one nurse, who was the long-term care liaison for a hospice agency. Staff particularly appreciated the way this highly skilled nurse provided consistent case management in the NH, treated NH staff with respect, and consulted with them in planning care. They also were grateful that the hospice nurse taught them about EOL care. Despite the strong, positive hospice presence, however, a few staff voiced a lack of understanding and concern about hospice services. Two participants implied that to them, hospice indicated a "giving up" and withdrawal of services. The ability to distinguish and articulate palliative care as a viable, aggressive option is imperative for staff to provide such care at EOL. Comments provided by participants suggest some of the ways that hospice staff can develop effective partnerships with NH staff.

Although this study provides insight into the needs of NH staff regarding EOL care, the findings must be interpreted cautiously. The sample was small, and represented staff experiences at only two NHs in one geographic area. Moreover, findings did not distinguish between the issues of RNs and licensed practical nurses, which may differ. Also, the convenience sample may have resulted in biased responses. It is possible, for example, that many NHs do not enjoy such favorable relationships with hospice staff as found in this sample. Similarly, level of expertise may vary greatly among staff and facilities. The similarities of current findings with findings from other published studies, however, lend credence to the validity of the themes identified in this study.

CONCLUSIONS

Nursing homes are important care environments at the end of life. Despite the increasing need for the provision of skilled EOL care, NH staff members often are unprepared to assume this important role. This study provides guidance in identifying and addressing staff needs and concerns to improve EOL care in the nursing home.

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TABLE

EDUCATIONAL NEEDS AND CONCERNS REGARDING END-OF-LIFE CARE

TABLE

EDUCATIONAL NEEDS AND CONCERNS REGARDING END-OF-LIFE CARE

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