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Correspondence: Address correspondence to Jean C. Munn, PhD, College of Social Work, The Florida State University, C2511 University Center, Tallahassee, FL 32306-2570. E-mail: jmunn{at}mailer.fsu.edu
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Key Words: Nursing homes • Assisted living • Qualitative research • Older adults • Dying
Notably few LTC studies (Goodridge, Bond, Cameron, & McKean, 2005; Munn & Zimmerman, 2006; Touhy, Brown, & Smith, 2005) and some studies conducted in other settings (Patrick, Engelberg, & Curtis, 2001; Singer, Martin, & Kelner, 1999; Steinhauser et al., 2000; Tong et al., 2003), have used qualitative methods to understand what is important at the EOL. Areas that have emerged include pain and symptom management, alleviating burden placed on loved ones, social relationships and support, spirituality, being treated as a whole person, and avoiding prolongation of the dying process.
However, the qualitative studies specific to death in LTC are limited in scope (e.g., including only one type of respondent or extremely small sample sizes), and only one non-LTC study (Singer et al., 1999) included LTC residents among respondents. This is an important omission, as the setting of care influences many aspects of the dying experience, including care philosophy, available services, relationships with caregivers, and caregiver training and knowledge (Mezey, Dubler, Mitty, & Brody, 2002). Furthermore, multiple perspectives such as those from families, staff, and residents allow for triangulation of sources and lend authenticity to the data (Padgett, 1998). Therefore, qualitative research specific to LTC and conducted with multiple respondent groups is appropriate in order to establish a knowledge base and to understand the EOL experience in LTC. Researchers have recommended that such studies explore issues beyond medical care and symptom management (Kayser-Jones, 2002) and seek population-level information on the quality of EOL care from residents, staff, or their families (Clark, 2003; Singer & Wolfson, 2003; Teno, 1999).
In response to these recommendations and to existing gaps in the knowledge base, this study conducted 10 focus groups and is unique in its inclusion of four stakeholder groups: residents, family, paraprofessional care providers, and licensed/registered staff (in homogenous groups). Using focus groups rather than individual interviews allowed respondents to interact with and respond to the ideas and comments of others (Krueger & Casey, 2000). Initially, the study aimed to determine the components of a good death in LTC based on input from all four groups and to compare findings with components identified as important in other settings. However, as the study progressed, focus group participants provided depth and insight on a variety of issues that were related to EOL yet beyond an understanding of a good death. Therefore, we expanded the study aims to include an examination of the EOL experience in LTC.
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At the beginning of each focus group, the project coordinator reviewed the consent form and procedure (e.g., voluntary nature of participation, confidentiality of the focus group discussion, $25 payment for participation), and each participant signed a confidentiality agreement and consent form. As an incentive to participate and to allow for uninhibited discussion away from the LTC setting, we conducted all groups over dinner in restaurants with handicapped-accessible, private dining rooms. Each group was audiotaped and notes recorded. Following the theoretical sampling model (Glaser, 1994), we conducted one of each type of group, reviewed the transcript, and made modifications to the interview guide before conducting the next group(s) of that type. Group sizes ranged from 3 to 12 participants. The institutional review board of the University of North Carolina at Chapel Hill approved all procedures.
Setting
We drew participants from a total of five NHs and eight RC/AL facilities in two areas (one urban and one rural) of North Carolina. For this study, we defined RC/AL facilities as nonmedical, community-based living arrangements that are not licensed as NHs; house two or more unrelated adults; provide shelter (room), food (board), and 24-hr supervision or protective oversight and personal care services in activities of daily living; and can respond to unscheduled needs for assistance.
Participants
Participants were a purposive sample (N = 65) of residents (n = 11), family members of decedents (n = 19), paraprofessional staff (n = 20), and licensed staff (n = 15) drawn from a total of 13 North Carolina facilities (five NHs and eight RC/AL facilities) that participated in the Collaborative Studies of Long-Term Care parent study, End of Life in Nursing Homes and Assisted Living Facilities (Sheryl Zimmerman, principal investigator), funded by the National Institutes of Health. In the parent study, staff and family provided data on the EOL experience of decedents. In the focus group study, it was desirable to examine themes related to a good death and to allow new themes to emerge.
Prior to contacting potential participants, the project coordinator sent each facility administrator a letter describing the focus group study and then called the administrator requesting permission to contact staff and families who had participated in the parent study. All facility administrators agreed that the research team could contact prospective participants.
Staff
The project coordinator contacted first by letter and then by telephone all staff who had participated in the parent study and were still employed by the facility (n = 25). However, there were too few such individuals to compose groups within geographic areas; hence, to ensure sufficient numbers of staff participants, we employed additional snowball sampling. We asked staff to identify others who might be interested in participating. After the referring person had received permission from the potential snowball participant, the project coordinator telephoned the potential participant to elicit his or her participation.
Family Members
Upon obtaining facility consent, the project coordinator sent a letter describing the study to a sample of family members who had participated in the parent project and who lived within the Research Triangle area of North Carolina (n = 40). We defined a family caregiver as the person most involved in care decisions for the deceased LTC resident during the last month of life and who visited the resident or spoke with the staff on the LTC resident's behalf at least once during the last month of life. The project coordinator then called each family member to describe the project and solicit participation.
Residents
The project coordinator asked administrators from 3 of the 13 participating facilities (one NH and two RC/AL facilities) for names of residents who might participate in a focus group on the EOL experience. Criteria for participation included the ability to (a) transfer to and from a specially equipped van necessary for transport to the focus group location, (b) verbally participate in a focus group conducted in English, and (c) discuss a sensitive subject without undue stress. The study coordinator then met with each resident candidate, described the study, and obtained informed consent in advance of transporting him or her to the focus group destination.
Measures
The facilitator used a semistructured interview guide with four primary questions: (a) "Some people have talked about the differences between a ‘good death’ and a ‘bad death’ in LTC. What does this mean to you, based on your experience?" (b) "If you could change (or control) only one thing at the EOL, what would it be?" (c) "What other aspects of residents' deaths do you feel are particularly important?" and (d) "Is there anything you would like to add?" Furthermore, the facilitator elicited and probed new areas mentioned by participants in accordance with standard focus group conduct allowing naturally occurring themes to emerge. The research team obtained demographic data (age, gender, race) for each participant.
Data Entry and Analysis
The research team transcribed focus group recordings verbatim and entered the data into Atlas/ti (Scientific Software, Berlin, Germany). Initially, two coders (DD and JCM) reviewed each transcript independently and assigned preliminary codes to the different content they found in participants' comments (a process known as manifest coding). They developed the codes by using an "open coding" strategy (i.e., not imposing pre-established categories on the data), and each code represented distinct information (Strauss & Corbin, 1998); if appropriate, the coders assigned any given passage more than one code. Examples of preliminary manifest codes are staff/family conflict and miscommunication. Atlas/ti, the qualitative data analysis program, was used to enter the codes, after which time the coders met, compared codes, and resolved ambiguities and discrepancies related to code definitions and assignment. Based on coding one transcript from each of the resident, caregiver, and staff groups, the coders compiled a master list of 107 codes (the "original code list") for use in coding the remaining transcripts, although they still created additional codes as necessary.
Then, as patterns emerged, related codes were clustered (axial coding) and axial codes added to the coding list to capture the conceptual relationships between the manifest codes (Strauss & Corbin, 1998). For example, during axial coding it became evident that staff/family conflict and miscommunication occurred together and in specific circumstances (such as related to the actual death of the resident) and that such miscommunication seemed to result in staff/family relationships becoming adversarial. In this way, adversarial relationships became an axial code that reflected a subcategory related to the open codes. In the final analyses, an open or axial code needed to be noted at least three times in a transcript to be included.
After completing the manifest and axial coding, three members of the research team (JCM, CSW, and SZ) analyzed the transcripts for latent themes (i.e., implicit themes or messages "behind" the text). They read one of each type of transcript identifying themes as they emerged. In so doing, they examined co-occurrence among codes and themes. Furthermore, they examined central characteristics and ranges of variations for each code and theme. In this way they developed a theme list for coding all transcripts. They identified themes found in all 10 groups as overarching themes.
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Theme 2: Normalcy of Dying in LTC
The normalcy of death in LTC was a naturally evolving theme among respondents who consistently and frequently spent time in the facility. Those who did view death as normal had socially constructed definitions of normalcy based on experience and expectation related to the frequency of death and physical proximity to other residents who were dying. For most, but not all, death was an expected outcome after moving into LTC. However, few family members expressed a sense of normalcy regarding dying in LTC. Those who did had prior experience with death in other settings or with deaths of other family members in LTC.
An 84-year-old male RC/AL resident introduced the matter of frequency: "One thing that hasn't been mentioned, I don't want to say we are surrounded by death, but for 350 people, elderly people, death is not unusual." He and other group members went further in quantifying normalcy: They agreed that three deaths within 1 month was normal, but the suggestion of more than three deaths in a month prompted a response of "Wow!" Similarly, paraprofessional staff from a different facility expressed distress when that facility experienced six deaths in a 3-month period. Thus, within the LTC context, even when death is considered normal, the deviation from some expected frequency was noteworthy.
Another matter related to normalcy derived from living in close proximity to one another. As such, residents became accidental witnesses to the deaths of others and described direct involvement, voluntary or involuntary, in these occurrences. An RC/AL resident described the following:
I was in an apartment in which the gentleman on the other side of the curtain was at the end of life and three times they came in and asked me if I would not like to move and ... I did say no ... I began to realize that I should have [moved] when the priest came in and was saying the Last Rites for the gentleman.
Also, residents happened upon other residents who were dying and willingly became part of the dying experience. An 87-year-old resident with a background in health care indicated the following:
I was with one person at [facility], who died ... she had friends in the room with her all the time, morning, noon and night. All the time she was dying, she had friends and I happened to go into the room at the point when she was really dying. And it was so fine that they allowed that, her friends were in the room all the time.
Resident participants in both groups had observed the removal of deceased residents' bodies from facilities. In one NH facility, bodies were taken through the main lobby; in another, the morticians came and left by the freight elevator. Residents considered both practices undignified. In other facilities, staff made sure residents did not witness this event by closing doors and removing residents from hallways. Residents saw this practice as representing dignity and respect for the decedent, as did some staff. However, other staff felt that this practice was unnecessary and that residents recognized the normalcy of death more readily when it was openly acknowledged.
Theme 3: The Role of Relationships in the Provision and Receipt of Care
All four respondent groups described relationships as instrumental in the delivery and receipt of EOL care. Residents established relationships with facility staff in order to negotiate care delivery. Some nurtured relationships with direct care staff; others established a relationship with the facility administrator. When things did not go well, they relied on these relationships to help them rectify problems. For example, one 71-year-old male resident indicated that he "went straight to the top" with problems. Family members also saw relationships as a method of ensuring better quality of care (see Table 3)<--CO?1-->. Exploration of the themes and codes identified three sub-themes related to relationships.
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Both paraprofessional and licensed staff provided emotional and spiritual support to residents in addition to personal and medical care. They indicated that they prayed and sang with and for dying residents, sometimes openly and at other times privately. Some staff saw themselves as responsible for the family members' emotional and spiritual support as well. However, family members associated with these same facilities did not report receiving emotional and spiritual support from staff.
Paraprofessional staff also provided emotional and spiritual support to one another. As one nursing assistant described:
I know that the two aides that work in the unit with me if somebody was to be dying or anything, they would cover the rest of my residents and theirs ... so we know to cover them and to give them an hour, whatever they need if they want to sit with that resident.
Relationships Vary in Their Degree of Empathy, Reciprocity, and Trust
Residents demonstrated empathy and reciprocity in relationships with staff, expressing concern for them and their families; one 87-year-old female NH resident remarked, "Of course, they're people. They have their own lives." Both paraprofessional and licensed/registered staff expressed and demonstrated empathy for residents and their families in spite of unpleasant experiences, as a nurse reported: "I even miss the people that I don't like because ... you become attached to them." Families were less likely to express empathy for staff, although one daughter indicated, "I wouldn't do that job for all the tea in China and for minimum wage. I think they do a really good job."
There were notable variations in empathy and emotional closeness between family members and deceased residents. Within this context, it was not unusual for family members to personalize the death from their perspective, considering it in relation to themselves, rather than to the resident, such as by commenting on how the decedent's death fit into the flow of the family life. Although one family member expressed empathy for her mother, who had been unable to verbalize her needs, there were fewer expressions of empathy toward deceased residents in family groups than in staff groups.
Family members and residents described varying levels of trust toward facility staff, with family members expressing the greatest distrust. Furthermore, family members demonstrated their distrust; they described showing up at the facility at different times so staff would not know when they were coming. They also expressed concerns about retribution toward residents if they expressed complaints too aggressively. Residents were more trusting and expressed trust in the facility to provide appropriate care; however, they also expressed some distrust in the direct care staff, whom they accused of stealing.
Relationships Become Adversarial Under Predictable Circumstances
Family and staff described circumstances that created conflict and caused family/staff or resident/staff relationships to become adversarial. Different stakeholders perceived these circumstances differently.
Conflict over EOL care
Relationships between family and staff became adversarial when staff saw family as consuming time and attention at the EOL. This issue was most pronounced when family had not visited prior to the EOL. One licensed nurse stated the following:
Families can help or hinder. If the family member has a grudge ... I've had to assist family members out of rooms. Some of the families never come and visit and they just want to be there at the end, so instead of peaceful time, it becomes very high anxiety.
Another described something akin to sibling rivalry: "You're there with them 24/7 and you know more than the family member knows. They [the family] don't like it like that."
Miscommunication
Relationships also became adversarial when there was miscommunication between facility staff and families, especially regarding medical treatment and the timing and expectation of impending death. Some miscommunication was as simple as word choice. However, all focus groups emphasized a desire for truth in communication, and, when miscommunication occurred, families consistently perceived this as staff being untruthful. Family members assumed that the staff could accurately predict the time and circumstances of death and expressed great distress if staff had not notified them of an impending death.
Theme 4: Hospice Contributions to Care at the EOL in LTC
The hospice theme evolved naturally in all focus groups, and all four respondent groups indicated that hospice services made a positive contribution to care at the EOL in LTC. However, each group perceived the function of hospice differently. Residents, some of whom had been enrolled in hospice, indicated that hospice contributed to their personal outlook on dying:
And that's where hospice sets in or steps in and helps you understand what death's about and you have a different outlook on it when someone tells you and you don't dwell on it every day or every week and you have an understanding with your family.
Families, in contrast, primarily saw hospice as a way of monitoring care, as illustrated by this quotation:
So, for me having hospice was having another set of eyes. If they did nothing else, I could call them and talk to them and say, what did you see? ... It was just that sense that at least I knew that there was somebody else that I could rely on to just be there, to just let me know if something was going on.
Licensed/registered staff saw hospice as being experts in pain management and a source of training and bereavement services for staff, in addition to providing services to families. Paraprofessional staff indicated that hospice provided additional care: "Any questions that come up, the hospice that we deal with is very, they're very assertive ... when you call them, you get a response." However, although paraprofessional care providers recognized the value of hospice, they wished to be more involved in care:
The hospice nurses come in and they talk to the DON [director of nursing] and the ADON [assistant director of nursing] and they figure out what their role's going to be, what kind of medication they're going to give them. But they don't include us on how we've been taking care of this patient for like two weeks or whatever. I think they should include the CNA [certified nursing assistant].
Theme 5: Stakeholder Recommendations for Improving Care at the EOL
Focus group participants stated two recommendations regarding improving care at the EOL: the need for more trained direct care staff, and the need for social work involvement. These particular recommendations were not explicitly solicited. Rather, they emerged from general questions regarding how EOL care might be improved. All respondent groups commented on the need for additional staff. One licensed nurse stated that what was most important to her was "having the staff to provide the care. Everybody knows there is a nursing shortage. When we're at our end of life, there is not going to be anybody to take care of us." A family member indicated, "They need to take that money and pay their staff nurses because I believe they should quit burning out their nurses." Residents also indicated the need for more staff and consistent staffing patterns: "Well, they don't have enough CNAs and they have a great big turnover ... you get acquainted with the CNAs and the first thing you know, they're gone."
Participants also indicated a need for more social work involvement or indicated a lack of services generally associated with social services. One licensed nurse stated the following:
A major problem I see is when somebody is dying or near their end of life, social services is not involved enough. It's very minimal. For them to be involved and help the family ... to be able to deal and cope with a resident dying, what they are going through ... social service are not working with them much and they very rarely see them and they just sort of know hearsay about what is going on.
When asked about social support, one family member responded, "Are you out of your mind? ... I had to go and find a social worker ... There's no communication. No, I would say there was no spiritual, emotional help." Furthermore, resident groups did not indicate support from social workers for themselves or dying residents as part of the EOL experience. Although noting the need, staff recognized staffing constraints, such as working in a facility in which there were 380 residents and one trained social worker. Still, staff and families were specific in naming social work as the needed profession.
Central Category: Closeness
Finally, using a grounded theory approach, we examined the themes to determine a central category (a category that is related to all categories, appears frequently in the data, is abstract, and grows in depth and power upon further examination; Strauss & Corbin, 1998). In this study, the central category was closeness. Closeness emerged as an integrating context for the overarching themes and was based on physical proximity and frequency and regularity of contact among stakeholders. Understandably, persons who were geographically closest and had the most contact were most likely to form relationships. However, closeness also influenced the properties of those relationships (e.g., collaborative or adversarial; degree of reciprocity, empathy, and trust) and the sense of normalcy associated with dying, with less closeness associated with less empathy, more miscommunication, adversarial relationships, and differences in expectations for hospice.
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Frequency of contact and physical proximity are especially pertinent in the theme of normalcy of dying in LTC. For three of the four respondent groups, there was an overall expectation of death as part of the LTC setting. Furthermore, despite higher mortality rates in NHs (Kiely & Flacker, 2003), residents of both RC/AL facilities and NHs saw death as normal. However, residents also wished to focus on living rather than dying, confirming findings in other studies (Engle, Fox-Hill, & Graney, 1998). This finding takes on new significance in LTC, as residents see death on an almost weekly basis.
Families did not consider death to be normal, though, which is an important difference between them and other stakeholders. This has implications for the relationships families have with LTC staff, especially because this study confirms findings from other studies that developing and maintaining relationships is important in LTC (McGilton, 2002; Zimmerman, Sloane, Hanson, Mitchell, & Shy, 2003). The inclusion of four respondent groups in this study allows a more nuanced and expansive examination that reveals the complexity of relationships among stakeholders. For example, although it seems counterintuitive that family members would express less empathy for dying and deceased residents than is expressed by licensed/registered staff and paraprofessional care providers, this was consistently the case. When examined in the context of normalcy and closeness, this finding becomes more understandable, as family members experience the death in a different context and have less physical proximity and less contact with residents (Port et al., 2003) than do staff. Also, the family members are experiencing the loss of a more personal relationship.
Relationships with families are additionally complex and ambiguous because although other studies have reported that staff see themselves as family to residents (Bitzan & Kruzich, 1990), these focus groups go further in describing the tension that develops when staff must move from a family-like role to that of an employee. This occurrence was particularly stressful upon the arrival of distant family who have had limited participation in the residents' lives prior to the EOL. However, staff developed close bonds with the residents and had more experience than families in dealing with the dying experience. Thus, they can and do support family during the EOL, a role not yet widely recognized or encouraged.
The issue of trust emerged as particularly salient in describing family/staff relationships. Distrust of staff by families and descriptions of failure to communicate often were associated with not being told that the resident was dying. These findings are congruent with current literature that describes staff/family relationships as adversarial and characterized by stereotyping, distrust (Krause, Grant, & Long, 1999; Tobin, 1995), and unrealistic expectations (George & Maddox, 1989; Heiselman & Noelker, 1991; Pillemer et al., 2003). However, unique to this study is the finding that some distrust grew out of an unrealistic expectation that staff should know, without error, the timing and trajectory of individual resident deaths. This matter is especially important because "being there" at the time of death is paramount to family members (Munn & Zimmerman, 2006).
The positive perception of hospice indicates that barriers to the use of hospice in LTC need to be addressed. For example, given the regulatory climate in NHs, administrators fear that NH surveyors will not see them as providing adequate care if they allow a resident's health and function to decline without curative intervention (Dobbs et al., 2006). Sometimes administrative staff do not see a need for hospice because they perceive their own staff as doing an adequate job already in the provision of EOL care. Financial barriers limit the provision of hospice care for NH residents who are receiving Medicare skilled services (Zerzan, Stearns, & Hanson, 2000). Such barriers include lower reimbursement rates and delayed reimbursement for dually eligible Medicaid/Medicare hospice beneficiaries (Miller & Mor, 2004). Also, NH administrators may discourage Medicare hospice enrollment for those who qualify for Medicare Skilled Nursing Facility coverage and are dually eligible because Medicare's Skilled Nursing Facility benefit has a higher room and board payment rate than the typical Medicaid NH benefit (Gage et al., 2000). Therefore, policies that provide equal funding for Medicare hospice beneficiaries are needed. Other studies have indicated that physician involvement increases hospice referrals and the timeliness of those referrals (Casarett et al., 2005); therefore, increased physician involvement is another area of interest.
Unfortunately, respondents mentioned social workers (who are trained in fostering collaboration; mediating adverse relationships; and providing support to families, residents and staff) as absent or as providing inadequate services. There was a suggestion that increased involvement of LTC social workers at the EOL might contribute to collaboration among stakeholders and thereby enhance the EOL experience for dying residents. Currently, social work services are mandated in NHs with at least 120 beds, but no such requirements exist in RC/AL facilities. These findings suggest an expanded role for social workers in both settings.
Limitations
This study has some limitations. As with all qualitative studies, the findings cannot be widely generalized. It is possible that motivated individuals with strong opinions attended the focus groups; thus, the opinions might be considered more extreme than would otherwise be the case. Also, resident attendance was dependent upon certain physical abilities, such as hearing and cognitive status. Therefore, participants in these focus groups are not representative of all individuals in LTC. However, the study presents four distinct participant groups from a total of 13 facilities and allows for triangulation of sources. Also, the inclusion of 65 participants in 10 focus groups is robust by qualitative standards.
Another limitation is that the focus groups were not "paired" in the sense that staff respondents were not necessarily reporting on EOL experiences regarding decedents of the family respondents. In addition, we drew resident respondents from only 3 of the 13 facilities. Finally, these groups occurred between 6 months and 2 years post death, which may have affected the ability of families to recall details accurately.
Implications
Despite these limitations, the study findings suggest avenues for improving the EOL experience in LTC. More recognition of the important and varied role of LTC staff is warranted, as these staff support both dying residents and their families. Anticipation of the increased stress experienced by those family and staff members closest to residents at the EOL could help to avoid staff/family conflict. Social workers might play an important role in this area and, along with hospice, improve the EOL experience in LTC.
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1 College of Social Work, The Florida State University, Tallahassee.
2 Program on Aging, Disability and Long-Term Care; and Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill.
3 School of Aging Studies University of South Florida.
4 School of Social Work, University of North Carolina at Chapel Hill.
Decision Editor: William J. McAuley, PhD
Received for publication May 4, 2007. Accepted for publication November 9, 2007.
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