Journal of Gerontological Nursing

FAMILY PERSPECTIVES on Dying in Long-Term Care Settings

Sarah A Wilson, PhD, RN; Barbara J Daley, PhD, RN

Abstract

ABSTRACT

Dying is a central experience in the life of a family. Yet there are few studies of dying in longterm care and the role of a family. The dynamic relationships among families, staff, and residents in long-term care facilities related to the process of dying is an area where research is needed. As part of a larger study of death and dying in long-term care settings, 11 family members who recently had experienced the loss of a relative in the long-term care setting were interviewed. The purpose of this study was to describe family perspectives on death and dying in long-term care facilities and to discuss ways staff may be helpful to families in coping with the loss of a family member. Analyzing death and dying from the family perspective offers health care providers an opportunity to expand the understanding of the phenomenon of death in long-term care facilities and to incorporate care activities that families view as helpful. Major themes emerged from this study, including the caring behaviors of staff, participating in the dying process, and providing spiritual support. The themes and practice implications are discussed in this article.

Abstract

ABSTRACT

Dying is a central experience in the life of a family. Yet there are few studies of dying in longterm care and the role of a family. The dynamic relationships among families, staff, and residents in long-term care facilities related to the process of dying is an area where research is needed. As part of a larger study of death and dying in long-term care settings, 11 family members who recently had experienced the loss of a relative in the long-term care setting were interviewed. The purpose of this study was to describe family perspectives on death and dying in long-term care facilities and to discuss ways staff may be helpful to families in coping with the loss of a family member. Analyzing death and dying from the family perspective offers health care providers an opportunity to expand the understanding of the phenomenon of death in long-term care facilities and to incorporate care activities that families view as helpful. Major themes emerged from this study, including the caring behaviors of staff, participating in the dying process, and providing spiritual support. The themes and practice implications are discussed in this article.

Dying is a central experience in the life of the family. Yet there are few studies of dying in long-term care settings and the role of the family. Family members in long-term care facilities may play a significant role in the day-to-day care provided to residents. They provide support, care, and a crucial link to the home environment of the resident. When a resident is dying in a longterm care facility, the family role may be intensified because family members are feeling a great deal of stress. At this point, families may turn to staff in the long-term care facility for advice, counsel, and encouragement. However,. little is understood about the dynamic relationships among families, staff, and residents in longterm care facilities, particularly related to the process of dying. How can staff in long-term care facilities be helpful to families when their spouse, parent, or relative is dying? What can health care providers learn from families and their experiences in the dying process?

As part of a larger study of death and dying in long-term care settings, family members who recently had experienced the death of a relative in the long-term care setting were interviewed (Daley & Wilson, 1999; Wilson & Daley, 1998). The purposes of this article are to describe family perspectives on death and dying in long-term care facilities and to discuss ways staff may be helpful to families in coping with the eventual loss of a relative. Analyzing death and dying from the family perspective offers health care providers an opportunity not only to expand understanding of the phenomenon of death in long-term care settings but to incorporate care activities that families view as helpful.

BACKGROUND

Dying occurs more often in an institution than at home among family members in America (Alliance for Aging Research, 1997). Institutionalized dying has been shaped by hightechnology hospitals and paucity of attention paid to the health needs of a growing elderly population (Benoliel & Degner, 1995). The health care system in the United States is organized around a life-saving ethic, with the majority of resources allocated to technology and research focusing on the diagnosis and treatment of diseases. Fewer resources have been allocated to long-term care facilities for the care of elderly individuals. The experience of death in long-term care settings is different from death at home or in a hospital (Buckingham, 1983).

The first studies of death and dying in institutions concentrated on hospitals as a place of death and the growing use of technology. Hospitalbased studies focused on communication with dying individuals, family members, and health care providers (Benoliel, 1983; Glaser & Strauss, 1965, 1968; Martocchio, 1980; Sudnow, 1967). The importance of family members having a clear explanation of the individual's condition and knowing everything was being done to keep the individual comfortable was supported in early studies of family reactions to their relatives' dying in hospitals (Freihofer & Felton, 1976; Gonda & Ruark, 1984). Martocchio (1980) described three adaptive patterns of families after the dying trajectory was known:

* Permission to die.

* Invitation to die.

* Relabeling the individual as a nonperson.

Permission to die was a pattern of adaptation where the family acknowledged it was no longer necessary to fight to live. Invitation to die was an acknowledgment given after a long illness that it was all right to give up and let go. Relabeling the individual as a nonperson was an adaptive response by the family when the dying individual was no longer perceived as a individual and was no longer able to communicate. These early studies demonstrated the importance of communicating with dying patients and families. More recent studies of death and dying have focused on other settings for care of dying individuals including long-term care.

Studies of death and dying in longterm care settings have focused on predictors of bereavement of adult children whose parents died in a nursing home (Pruchno, Moss, Burant, & Schinfeld, 1995). Study findings suggested nursing home staff should be sensitive to the discomfort experienced by adult children when their parents Uve in a nursing home. The feelings experienced by families have implications not only for the nursing home stay but also for bereavement outcomes. Families that had negative experiences with the nursing home were sadder and found less comfort in memories (Pruchno et al., 1995). Other studies focusing on staff in long-term care settings have described the attachment of staff to residents, the role of staff as surrogate family members, and the significance of the loss of a resident for staff (Depaola, Neimeyer, Lupfer, & Fiedler, 1992; Heiselman & Noelker, 1991; O'Hara, Harper, Chartrand, & Johnston, 1996; Sumaya- Smith, 1995; Wilson & Daley, 1998).

Dying is part of Ufe in long-term care faculties. Care of dying individuals occurs alongside of care for residents receiving restorative care, rehabilitation, and ongoing assistance with activities of daily Uving. Longterm care facilities are home for many people, and residents come to consider other residents and family members as a surrogate family. Thus, the loss of a resident has impact on other residents and family members. Buckingham (1983) described four categories of individuals who die in long-term care settings:

* Individuals who are placed in a nursing home, Uve there for some time, and become terminally ill and die.

* Individuals who are admitted from the community and die shortly after admission.

* Individuals who are discharged from a hospital and die within a few weeks or few days after admission.

* Individuals who live in the community, are terminally ill, and need hospice care in a skilled facility. The importance of providing support to families during the dying process and the bereavement period has received considerable attention in the literature (Bowlby, 1980; DeBlosi, 1994; Parry & Smith, 1985, Pattison, 1977).

Early studies of dying in institutions were hospital-based and emphasized the importance of families having a clear understanding of the individuals' condition and knowledge that appropriate measures were being undertaken to promote comfort. Later studies focused on dying in other settings including long-term care. Long-term care facilities differ from hospitals because for many people the facilities are home. The importance of providing families support during the dying process has been emphasized in most studies. However, little is known about what families identify as helpful in coping with the eventual loss of a relative.

METHODS

Qualitative interpretive methods were employed in this exploratory study. A qualitative perspective was selected to provide detailed and indepth data on the issues of death and dying in long-term care settings from the perspective of those directly involved. Inductive methods described by Lincoln and Guba (1985) were used in the generation and analysis of data. The researchers believed it was essential to talk with staff, administrators, and families about their perspectives on the process of dying to understand the experience of death and dying in long-term care facilities.

Data Collection

The family members interviewed were part of a larger study on death and dying in long-term care facilities. As part of the larger study, focus groups were conducted with 155 staff and administrators in 11 long-term care facilities in a large city in the midwestern United States. Six facilities were religiously affiliated, and five were for-profit facilities. The purposes of these focus groups were to explore problems in providing humane care to dying residents that fosters gentle closure to life and to identify the learning needs of staff and administrators regarding providing care of dying residents (Daley & Wilson, 1999).

In addition to staff and administrator participation, 1 1 family members who experienced a loss within the past 4 weeks were invited to participate in the study. The director of nurses or social worker asked families for permission to have the researchers contact them. The researchers then telephoned family members to explain the study, invite their participation, and schedule an interview. Informed consent was obtained prior to the interviews. AU family members who were contacted agreed to participate in the study. Two researchers, one who was a grief counselor and one who had extensive experience with hospice settings, conducted the interviews. All interviews were conducted at the family members' homes and were audiotaped. Field notes were recorded immediately after the interviews to describe nonverbal responses. The majority of interviews was with one family member who was either a spouse, adult child, or niece. One family requested the two adult daughters and a son-in-law be present for the interview. The interviews ranged from 60 to 90 minutes. Family members were assured if the interview became too difficult they could terminate it at any point. However, no family members asked to terminate the interview. In some cases, the interviews were emotional for the family members, and they cried. Most family members welcomed the opportunity to talk about their relatives and expressed gratitude to the interviewer for asking them to participate in the study.

Family members were asked questions in the following areas:

* When they became aware their loved one was dying.

* Who informed them and what was said.

* What questions they had and if they were answered.

* How staff were helpful to them.

* The care their relative received and the care they received as a family member.

* What would be helpful for staff in long-term care settings to know about caring for dying residents and their family members.

Data Analysis

Data were analyzed using thematic inductive analysis. The investigators listened to all audiotapes, read and reread transcripts, and compared them for accuracy. Each researcher reviewe&the data and identified categories. This process continued until all categories were identified and agreed on by both researchers. The process of independently coding the data and then jointly coding the data was selected because it provides an opportunity to assess reliability of coding regarding major themes and categories (Stewart & Shamdasani, 1990). Lincoln and Guba (1985) state a study is valid or credible when it presents a description of an experience other people can recognize when confronted with that experience after having read about it in a study. Credibility of the data was assessed by member checks throughout data collection. In addition, the researchers attempted to achieve dependability and credibility by examining all methodological decisions, pilot testing, and revising the interview guide and reviewing categories and themes to determine if they were grounded in the data. After the categories were identified, all transcripts and field note data were entered into an electronic data management program. This process allowed the researchers to compare and contrast data in different categories and subsequently collapse some codes and categories to be more precise. The software program also faciUtated a review of data shared across family members related to each theme or category.

FINDINGS

The major themes that emerged from this study were:

* Caring behaviors of staff.

* Participation in the dying process.

* Provision of spiritual support.

Caring Behaviors of Staff

The caring behaviors of staff were evident in the attachment of staff to residents and famines. One family member described the caring behaviors of staff:

The thing that impressed me the most was that they treated their patients as if they were a family member of their own. It wasn't a matter of you're just a number or you're just a name. They took time even if it was just a half second as they were walking down the hall to grab someone's hand and say "How are you doing?" or they give someone a hug. That made a big difference.

Another family member commented about the nurse's interest in the family's well-being:

The nurses were attached to my dad. They would spend time talking to me too; they asked how I was doing - if there was anything they could do to help. They were always asking. A coupie of the nurses became attached to him and even cried that morning before he passed away.

Other family members commented that the nursing assistants were like family.

The nursing home residents in this study had varying lengths of stay, ranging from a few weeks to 10 years. The average length of stay was 5 years. All family members visited frequently, at least two to three times per week, with the majority of famihes visiting every day. If the famiUes were unable to visit for some reason, they telephoned the nursing home. As one result of visiting frequently, famines became a part of the nursing home and were acquainted with staff, other residents, and their family members.

The care of their loved one was important and "being there and keeping in touch with the staff" was identified as important for families. Some famines continued to visit the nursing home after the loss of their relative. One individual commented, "I've been there three times since Mom died. The staff is so glad to see me, we hug. I'm glad to see them too."

Family members described several caring behaviors of staff that were important to them during the nursing home stay and when their loved one was dying. It was important that staff members took the time to come in the resident's room to see if the family needed anything and how they were doing. Staff also seemed to know when the family needed to be "left alone." Several family members commented that the staff "looked over them." Family members appreciated caring activities, such as staff members bringing them coffee and sandwiches when they were staying at the nursing home for an extended period of time. One family commented that the staff found a comfortable chair for their father to sit in when they were staying with a dying relative. Family members spoke about developing a close relationship with the staff because they were there every day. The social worker was identified as especially helpful by one family. In particular, they appreciated that the social worker was available in the evening, and they commented that the social worker called them at home to ask "How is it going?". The above behaviors were important because families beUeved the staff had an understanding of the difficulty they were experiencing at that time.

Family members identified that it was important staff Ustened to their concerns. Staff took the time to answer questions, or if they did not know the answer, they would find out. One family member commented, "sometimes people just want to be heard." One family suggested family conferences be held soon after admission to give the family a chance to ask questions and agree on a plan of care.

Participation in the Dying Process

In addition to the caring behaviors of staff, family members also identified that participation in the dying process was important. Participation in the dying process included being involved in decision-making, understanding the dying process, and being present at the time of death. Making decisions about care at the end-of-life was often difficult for famines, and they needed assistance from staff. One family member talked about making the decision for no further active treatment:

I did not want my husband to suffer. And actually up to 3 weeks before he passed away, I had him on full code status. No one ever explained to me what Ulis meant. So I talked to die director of nurses. I thought if he was no code and got sick, they just would not do anytiiing. So she explained it to me. A couple other nurses talked to me about it too. So then I took him off die full code.

Family members discussed advanced directives and indicated that they knew their relative would not want to be kept alive by artificial means. However, families still had a number of decisions to make such as whether to treat with antibiotics or to hospitalize the relative as their condition changed. One family member commented:

We knew certain things diat my grandmother did not want. Then we had to make some decisions about antibiotics. Her leg was infected. We decided at one point not to do any more antibiotics. We were all in agreement that we wanted to keep the nutrition.

Staff were able to provide families with information to assist them in decision-making, including the discussion' of treatment options.

It often was difficult for families to understand that the dying process occurs over time. The length of time for the dying process was a factor in how families coped with the eventual loss. Family members talked about the dying process "taking too long." One family member explained:

The best thing that could happen was for her to die. But she just hung on and hung on. The final 4 weeks there was nothing there; she didn't have a life.

Another family member commented that she believed, "God did not intend for people to have their lives artificially extended and that is why a Kevorkian is there." Family members identified that time also was a factor for some residents. One daughter commented:

Mom was ready. She was ready, no doubt about it. She just didn't want to be here any more. So the last few months, a long time, she was just sitting there and looking very depressed. She didn't want to talk anymore.

Table

TABLEPRACTICE IMPLICATIONS

TABLE

PRACTICE IMPLICATIONS

Two families requested their relatives be admitted to a hospital because they believed the hospital could do more to keep the individual comfortable. In both cases, the individual died in the hospital. Family members of other residents wanted the family to remain in the nursing home when they knew death was imminent. One daughter spoke about her mother's death:

I'm glad she died here in her own bed. She saw familiar faces. Mom hated the hospital. She was in the hospital a couple times with her hip. She wanted to stay here.

Being Present at the Time of Death

The majority of families were not present at the time of death; only two families were present. Family members were notified of the death of a loved one by a telephone call from a nurse. One woman whose husband was in the nursing home for 5 years questioned why the staff did not inform her that her husband was dying:

Why didn't they tell me he was dying? Why didn't they call me? They called for everything else, at 1 1:00 p.m. or in die middle of the night. The two men in his room told me they could not sleep all night because the staff were in and out of the room all night. I asked if anyone was with him. I think it's important to hold hands. We were great hand holders. I would have loved to hold his hand. I would have took his hand and kissed it.

Perhaps the staff were unaware this family member wanted to be present at the time of death. Another family member indicated that as soon as she realized her husband was "that bad" she told the staff, Tm not going home."

Provision of Spiritual Support

Spiritual support was identified as helpful to families and residents. Some facilities had a chapel available, and this was important to families because it provided a place for reflection and meditation. The residents also appreciated the availability of a chapel because they valued being able to attend religious services. Some facilities held funeral services in the facilities, and this was identified as helpful to other residents who were grieving and it provided some closure. One daughter commented about the lack of spiritual support:

I think they need to have a chaplain. Someone here diat could help people if they need it. As much as my mom wasn't a reUgious fanatic, she could have used that.

Another family member commented that one thing lacking was religious support:

Mom wasn't a real Bible-reading person, she had no chaplain to speak to. We had to arrange that all ourselves. They reaUy could have used someone to come in and spend some time with her. I think we all could have used someone to share some time with us.

Family members identified a number of caring behaviors they believed were important for nurses. These included Ustening to family concerns and answering questions, knowing the family, allowing families to express grief and cry, and reassuring the family that the resident is comfortable. One family member commented:

It was important to me how they cared for my husband. They called him by name and told him what they were going to do before they did it.

Another family member indicated the staff should acknowledge the individual is not the same as they always were. This was a concern because the resident had dementia. She commented, "they don't go out of the womb to senility." This family member recommended staff learn more about what residents did in the past - their life accomplishments .

DISCUSSION AND PRACTICE IMPLICATIONS

The families in this study identified a number of important issues in the care of individuals who are dying in long-term care settings, including the caring behaviors of staff, participation in the dying process, and provision of spiritual support. The caring behaviors of nursing home staff assisted family members in coping with the eventual loss of a loved one. Close emotional bonds often developed between famiUes, staff, and residents. Contrary to a popular beUef that nursing home residents are forgotten, the families in this study remained committed and connected to their relative by visiting or telephoning the nursing home staff. Families stressed the importance of "staying in touch" and "knowing the staff." Although this study was limited to 11 families, the study findings have implications for long-term care facilities and practice (Table).

The primary concern of famiUes was that their relative was well cared for and comfortable. The majority of family members did not want the resident transferred to another setting for care at the end of life. Families had a number of questions about the dying process and expected staff to answer their questions honestly. The families valued the staff listening to their concerns. It was important for staff to explain what comfort measures and care could be provided in the nursing home.

Caring behaviors of staff that were important to the families were stopping in the room to see how the family was doing and having a sense of "when it was important to stay and to leave." Families appreciated staff efforts such as offering coffee, getting a sandwich, and locating a comfortable chair for a family member. By smiling and asking how the family was doing, staff demonstrated caring to families. Nursing home staff may need to recognize the importance of these behaviors to families. Staff development instructors in nursing homes can provide staff with examples of caring behaviors, and these behaviors may be fostered in longterm care settings. Sharing grief with family members was not uncommon, and staff often cried with famiUes after a resident died. Families described this as something positive and evidence that the staff "reaUy cared."

The findings of this study support the importance of discussing advance directives with residents and famiUes. This is helpful in faciUtating family participation in decision-making. There was some confusion on the part of family members regarding what is meant by advance directives and what the resident would want. Residents and family members need to discuss what kind of treatments or procedures they would want prior to a life-threatening illness. Staff also should inquire if family members wish to be present at the time of death. It is important that families understand it may not be possible for them to arrive in time, but staff will make every effort to notify them as soon as death is imminent.

The provision of services in nursing homes is another area that merits consideration. Services traditionaUy provided in the daytime may need to be expanded to evening hours, such as social work services. As more famiUes are juggling work demands, family demands, and visiting, it may be helpful to include some evening hours for services. Social work services were available in the evening in one of the long-term care facilities in this study, and the family identified this as helpful.

Provision of Spiritual Care

Providing spiritual care was an area identified as important by famiUes. Although residents may not be active with a church or religious group, families identified this as helpful. Asking residents if they desire a visit from clergy would be beneficial. Usually a resident is asked this question on admission. However, as residents' conditions change, the residents or families may appreciate being asked again and may want a visit from clergy. Staff also may pray with residents or famiUes if they wish. One family member in this study commented, "Don't be afraid to ask families about reUgion."

CONCLUSION

The attachment that developed between nursing home famiUes and staff was helpful to family members in coping with the loss of a loved one. FamiUes perceived nursing home staff as essential to creating a supportive and caring environment. Nursing home staff are in a unique position to assist families in coping with the loss of a relative during the dying process and after death has occurred. Because many families return to the nursing home to visit staff or other families, it may be helpful to provide a support group for families. Families also may benefit from interacting with other families who have experienced a loss in the long-term care setting.

Further study of family experiences with death and dying in longterm care settings should be undertaken. This study was limited to 11 families, and interviews occurred within 4 weeks after the loss of a loved one. Recommendations for further research include interviewing family members during the dying process and shortly after death. Learning more about family experiences may assist families coping with the eventual loss of a relative and improve family satisfaction with nursing home care.

The role of the family in long-term care settings is significant. Families may have delegated the physical care of the resident to the long-term care facility, but they have not delegated their role as a family member. Longterm care facilities need to incorporate the family in the provision of care to dying residents.

REFERENCES

  • Alliance for Aging Research. (1997). Seven deadly myths: Uncovering the facts about the high cost of dying in the hst year of life. Washington, DC: Author.
  • Benoliel, J.Q. (1983). Health care providers and dying patients: Critical issues in terminal care. Omega, 18(4), 341-363.
  • Benoliel, J.Q., & Degner, L.F. (1995). Institutional dying: A comparison of cultural values, technology, and social organization. In H. Wass & R.A. Neimeyer (Eds.), Dying: Faring the facts (pp. 117139). Bristol, PA: Taylor & Francis.
  • Bowlby, J. (1980). Attachment and loss: Vol. 3. Loss: Sadness and depression (pp. 443-462). New York: Basic Books.
  • Buckingham, R. W. (1983). Hospice in a longterm care facility: An innovative pattern of care. Journal of Long-term Care Administration, 11, 10-14.
  • Daley, BJ., & Wilson, S.A. (1999). Needs assessment in long-term care facilities: Linking research and continuing education. Journal of Continuing Education in the .Health Professions, 19(2), 111-121.
  • DeBlosi, J. (1994). Changing the way we care for the dying. Health Progress, 75(2), 48-49, 52.
  • Depaola, S.J., Neimeyer, R.A., Lupfer, M.B., Sc Fiedler, J. (1992). Death concern and attitudes toward the elderly in nursing home personnel. Death Studies, 16, 537-555.
  • Freihofer, P., & Felton, G. (1976). Nursing behaviors in bereavement: An exploratory study. Nursing Research, 25, 332-336.
  • Glaser, B.G., & Strauss, A.L. (1965). Awareness of dying. Chicago: Aldine.
  • Glaser, B.G., & Strauss, AL. (1968). Time for dying. Chicago: Aldine.
  • Gonda, TA., & Ruark, J.E. (1984). Dying dignified: The health professionals' guide to care. Menlo Park, CA: Addison-Wesley.
  • Heiselman, T, & Noelker, L. (1991). Enhancing mutual respect among nursing assistants, residents, and residents' families. The Gerontologist, 31, 552-555.
  • Lincoln, Y.S., & Guba, E.G. (1985). Naturalist inquiry. Beverly Hills, CA: Sage.
  • Martocchio, B. (1980). Living while dying. Bowie, MD: Robert J. Brady.
  • O'Hara, P.A., Harper, D.W., Chanrand, L.D., & Johnston, S.R (1996). Patient death in a long-term care hospital: A study of the effect on nursing staff. Journal of Gerontological Nursing, 22(8), 27-35.
  • Parry, F.K., & Smith, MJ. (1985). The significance of the patient/family as a unit of care in working with terminally patients. Hospice Journal, 3, 37-49.
  • Pattison, E.M. (Ed.). (1977). The experience of dying. Englewood Cliffs, NJ: Prentice Hall.
  • Pruchno, RA., Moss, M.S., Burant, C.J., & Schinfeld, S. (1995). Death of an institutionalized parent: Predictors of bereavement. Omega, 31(2), 99-119.
  • Stewart, D.W., & Shamdasani, P.M. (1990). Focus groups: Theory and practice. Newbury Park, CA: Sage.
  • Sudnow, D. (1967). Passing on: The social organization of dying. Englewood Cliffs, NJ: Prentice-Hall.
  • Sumaya-Smith, I. (1995). Care giver/resident relationships: Surrogate family bonds and surrogate grieving in a skilled nursing facility. Journal of Advanced Nursing, 21, 447451.
  • Wilson, S.A., & Daley, BJ. (1998). Attachment/detachment forces influencing care of the dying in long-term caie. Journal of Palliative Medicine, 1(1), 21-34.

TABLE

PRACTICE IMPLICATIONS

10.3928/0098-9134-19991101-08

Sign up to receive

Journal E-contents