Research in Gerontological Nursing

Empirical Research 

End-of-Life Care for Rural-Dwelling Older Adults and Their Primary Family Caregivers

Lissi Hansen, PhD, RN; Juliana C. Cartwright, PhD, RN; Carol E. Craig, PhD, RN

Abstract

Older adults dying from chronic illness in rural areas are understudied and of concern because of their limited access to health services. The purpose of this qualitative descriptive study was to describe the perspectives of primary family caregivers regarding experiences with formal and informal care at the end of life for dying older adults in one rural, agricultural county. Semi-structured interviews were conducted with 23 caregivers following the death of an older relative. Major themes that emerged from the data were the benefits and challenges associated with care services. Benefits included neighbors, friends, and other volunteers who offered household help and provided respite care. Challenges included limited resources for continuity of care, geographical service boundaries, and lack of knowledge about end-of-life care by paid caregivers. Further research that addresses the perspective of rural service providers is needed to better understand the benefits and challenges of end-of-life care in this setting.

Abstract

Older adults dying from chronic illness in rural areas are understudied and of concern because of their limited access to health services. The purpose of this qualitative descriptive study was to describe the perspectives of primary family caregivers regarding experiences with formal and informal care at the end of life for dying older adults in one rural, agricultural county. Semi-structured interviews were conducted with 23 caregivers following the death of an older relative. Major themes that emerged from the data were the benefits and challenges associated with care services. Benefits included neighbors, friends, and other volunteers who offered household help and provided respite care. Challenges included limited resources for continuity of care, geographical service boundaries, and lack of knowledge about end-of-life care by paid caregivers. Further research that addresses the perspective of rural service providers is needed to better understand the benefits and challenges of end-of-life care in this setting.

As the population of the United States ages, the number of older adults who experience multiple chronic illnesses, cognitive impairment, disability, and dependence will increase. Adults older than 75 are reported to have, on average, three chronic health problems (Alliance for Aging Research, 2002), and 69% of individuals receiving home health care services are 65 and older (Mezey, Dubler, Mitty, & Brody, 2002). At the end of life, chronic disease is identified as the primary cause of death for 87% of people older than 65 (Centers for Disease Control and Prevention, 2010). Family members provide most of the care for older adults at the end of life (Wolff, Dy, Frick, & Kasper, 2007).

Most of what is known about end-of-life care in rural areas comes from Australia (Sach, 1997; Troller, 1995), Canada (McRae, Caty, Nelder, & Picard, 2000), and the United Kingdom (Evans, Stone, & Elwyn, 2003; Hughes, Ingleton, Noble, & Clark, 2004). Research on rural-dwelling older adults with chronic illness and their primary family caregiver is limited in the United States (Magilvy & Congdon, 2000), and even less research has been conducted on these populations in the context of end-of-life care. How end-of-life care occurs in rural areas is both understudied and of particular concern, because rural older adults are defined as an underserved population with limited access to health care (National Institutes of Health, 2002). This limited access may influence the care rural older adults receive, and thus the care experience of their caregivers. The purpose of this study was to describe the perspectives of primary family caregivers regarding experiences with formal and informal care at the end of life for dying older adults in one rural, agricultural county.

Background

In 1995, findings of inadequate pain and symptom management; lack of provider communication with dying patients and families; and fragmented, poor quality, or nonexistent support services at the end of life (Connors et al., 1995) generated significant concern. While the palliative and end-of-life care research and practice communities have made great strides in improving symptom management and discussing treatment options in life-threatening illness, much basic and translational research is still needed (National Institute of Nursing Research, 2011). Understudied areas include how to best support family members who care for dying relatives, as well as the nature of care delivery, particularly in rural settings (Madigan, Wiencek, & Vander Schrier, 2009). Care at end of life is provided by both formal and informal systems, neither of which is well understood in rural areas.

Formal care refers to health care services delivered by paid providers. For rural older adults, these services are less available, less accessible (Hunt & McCaul, 1998), and narrower in range and scope than for their urban counterparts (Congdon & Magilvy, 2001). Wilson et al. (2006) found that specialized palliative care and home care were especially limited in rural areas. Most rural areas have substantially fewer hospice providers (Madigan et al., 2009), and more geographically isolated families tend to have less access to formal services, including nursing care (Ingleton et al., 2004), than less-isolated families (Buehler & Lee, 1992).

Informal care consists of those services that are provided by unpaid family members, friends, or volunteers. In rural settings, the use of informal care and networks may be a product of necessity, rather than an active choice (Hughes et al., 2004). In fact, the effectiveness of informal care in rural communities may be a product of community willingness to help (McCann, Ryan, & McKenna, 2005).

Numerous factors influence the end-of-life care experience in rural communities, including geographical dispersion of residents with long distances between small population centers, financial hardship secondary to the poverty rates in rural areas, lack of available family support systems due to out-migration of family members, and lack of qualified nurses with adequate training in end-of-life care (Buehler & Lee, 1992; Crawford, 2000; McCann et al., 2005; Tilden, Tolle, Drach, & Perrin, 2004). These factors may interact. Insufficient availability of qualified nurses who must travel long distances can adversely affect symptom management and increase care burdens for family caregivers. Understanding the experience of family caregivers in communities that are both rural and agricultural is a beginning step for creating appropriate and specific interventions to improve end-of-life care for older adults and their families in these settings (DeCourtney, Jones, Merriman, Heavener, & Branch, 2003; Morgan, Semchuk, Stewart, & D’Arcy, 2002).

Method

Study Design

A qualitative descriptive study was planned to learn about the experiences associated with being a primary family caregiver to a dying older adult in a rural, agricultural setting. The investigators have all lived, taught, or conducted research in rural communities, and they wanted to describe the experiences with formal and informal care from the perspectives of caregivers. A goal was to develop a descriptive summary of caregiver perspectives that closely adhered to the language of the participants. Thus, use of a generic, qualitative, exploratory design was appropriate (Caelli, Ray, & Mill, 2003). Qualitative description is particularly useful for examining situations where multiple perspectives exist and for exploring issues about which little is known (Brink & Wood, 1989; Guba & Lincoln, 1989; Sullivan-Bolyai, Bova, & Harper, 2005). Prior to starting the study, Institutional Review Board approval was obtained from the university where the three investigators worked.

Setting

The study was conducted in a rural, agricultural Pacific Northwest county of 5,944 square miles with a population of 66,380 people (U.S. Census Bureau, 2011). The county is isolated from the main population centers in the state by forested mountains and narrow, winding roads. The county has an average of 11.2 people per square mile and therefore meets the U.S. Census Bureau (2010) definition of rural. On the basis of employment, wages, and income data, the county is “severely distressed” (Business Oregon, 2009). The economic base is primarily agricultural, and 20.2% of the county residents are below the federal poverty level, compared with 14.3% of total residents in the state (U.S. Census Bureau, 2011). In 2007, 13.4% of the residents had no health insurance (Oregon Office of Rural Health, 2008).

Although the population center, a town of 20,060 residents, has one hospital with 176 licensed beds and one skilled nursing facility with 80 licensed beds, the county is federally designated as a health professional shortage area. The death rate is somewhat higher than the state average at 10.8 per 1,000 versus 8.4 per 1,000 (Oregon Health Authority, 2008), which may be a reflection of the greater numbers of older adults in the county. While 13.9% of the state is 65 and older, in this county, 17.1% are older than 65 (U.S. Census Bureau, 2011). In 2007, the four leading causes of death for people 65 and older were cancer, heart disease, chronic lower respiratory disease, and cerebrovascular disease (Oregon Health Authority, 2008). These are all typically chronic conditions with prolonged and uncertain dying trajectories.

Sampling Plan

The purposive sampling plan called for interviewing a family member who identified himself or herself as the primary caregiver for a decedent older than 60. Family members were defined as a spouse or partner, parent, adult child or grandchild 18 and older, sibling, or identified significant other of a deceased older adult. To ensure detailed descriptions of end-of-life experiences, potential participants were asked to rate their level of involvement with care on a scale ranging from 0 (not at all) to 4 (very involvedmain person who cared for and/or made decisions for decedent). People who responded that they were the main person who provided care and/or made decisions for the decedent were included in the study.

Recruitment

Recruitment was conducted through funeral directors and hospice staff, who mailed an investigator-developed information flier to families of older adults who had died 2 to 12 months earlier. Interested people called a toll-free number, where a research assistant provided basic information about the study, obtained contact information, and arranged for one of the investigators to contact the participant. The investigators called potential participants to answer questions about the study, confirm eligibility, and arrange an interview time. Written informed consent to participate was obtained prior to the start of the interview.

Data Collection

The open-ended, semi-structured interview guide was adapted from The Missoula Demonstration Project Profile Part II Adult Interview Guide, which addresses the following issues that dying people and their families encounter during the end-of-life care experience: “(1) Life with illness; (2) dying; (3) experience of formal care; (4) experience of informal care; and (5) experience of grieving” (Byock, Norris, Curtis, & Patrick, 2001, p. 766). Questions addressed the nature and quality of the dying experience, perceptions of formal and informal care services, and post-death support for the family. Permission to use and adapt the guide was provided by Dr. Lee, Professor of Nursing at Montana State University and a consultant on the project. Initial modifications of several items were made to more closely align the questions with our study aims. Examples of the types of questions asked were:

  • During the course of [decedent’s] illness, what questions or concerns were most on your mind?
  • In what ways did family members help?
  • What kinds of practical and/or emotional support did you receive from your (a) friends, (b) neighbors, (c) groups to which you belong (e.g., clubs, organizations)?

New items were developed early on during data collection to capture characteristics of the county. For example, items were added that asked how chores were managed, since much of the county is farmed and ranched.

Demographic data were collected for the purpose of describing the participants and the decedents. These questions asked about age, gender, relationship, and ethnicity, as well as about the distances between the decedent’s and participant’s residences and health care services, such as the hospital and care providers. All three investigators conducted the face-to-face interviews that occurred at a time and place convenient for the participants. All interviews were audiorecorded with digital equipment. Field notes were recorded after each interview to describe any factors (e.g., disruptions) that might have affected the quality and nature of the data. The interviews ranged in length from 45 minutes to 2 hours.

Data Analysis

The analytic goal was to develop a basic description of the experiences of the participants with minimal conceptual interpretation of the data. Qualitative description guided analysis of the text data (Hsieh & Shannon, 2005; Sandelowski, 2000, 2010). Interviews were transcribed verbatim with all personally identifying information deleted. After the transcripts were proofread for accuracy, the data were entered into NVivo7 data management software. The three investigators individually read and coded the first five transcripts, then met as a team to develop an initial set of codes and definitions. Each investigator separately read and coded five additional transcripts, then met again to compare coding, resolve discrepancies, and add new codes as needed. Subsequent transcripts were individually coded by the three investigators, who met regularly to discuss the analyses, clarify their inductive thinking, debate differences in interpretations, and reach consensus regarding the interpretations. Coding notes about the data were reviewed and discussed in team meetings. Minutes were recorded during all meetings to track the discussions and decisions about the data, including the analysis.

Preliminary analysis involved open coding, or the assignment of labels to words or phrases representing key ideas (Hsieh & Shannon, 2005). Analysis within and across the interviews resulted in identification and clarification of recurring patterns or themes (Miles & Huberman, 1994; Sandelowski & Barroso, 2003). For example, “managing symptoms” was frequently discussed and involved obtaining medications or equipment, talking with a hospice nurse, knowing when the symptom needed managing, and deciding if management efforts were successful. The investigators each maintained notes about the ideas represented in the data (Hsieh & Shannon, 2005). These analytic approaches led to descriptions of types of challenges and benefits related to care, as well as associated factors.

Criteria for trustworthiness developed by Lincoln and Guba (1985) guided verification that the qualitative analysis represented the data. Strategies used included (a) audiorecording the interviews, (b) individual and team coding of transcripts, (c) using different perspectives of three investigators to analyze the data, and (d) holding regularly scheduled meetings during which coding and analysis were discussed and differences debated to reach consensus regarding the findings. The field notes, meeting minutes, codebook, and investigator notes provided an audit trail for the processes used in developing the findings.

Findings: Participants

The sample consisted of 23 primary family caregivers (mean age = 60.52, SD = 15.54, age range = 30 to 94) who were interviewed following the death of a relative (mean age at death = 81.52, SD = 10.31, age range = 60 to 97). Regarding their relationships to the decedent, 57% were an adult child, 35% were spouses or partners, and 9% were classified as other, including a granddaughter and a daughter-in-law. All deaths except one happened outside of the hospital. The Table includes more information about the sample.

Demographic Characteristics of the Participants

Table: Demographic Characteristics of the Participants

Major Themes

The primary family caregiver participants used a range of formal and informal care resources and services during the final weeks of the older adult’s life and after the relative’s death. The predominant themes were that the rural setting provided both benefits and challenges during these experiences. Benefits to the end-of-life care experience in the rural setting included:

  • Primary family caregivers sometimes personally knew the formal care providers.
  • Flexibility in organizational support.
  • Other family members provided a range of support.
  • Church members provided many types of support.
  • Neighbors and friends, seeing what needed to be done, often helped out with chores.

Challenges to the end-of-life care experience reflected limitations in resources and caregiver stressors including:

  • Service boundaries led to limited hours or availability of some formal services.
  • Lack of qualified caregivers.
  • Lack of continuity of care.
  • Primary family caregiver stress.

Benefits to the End-of-Life Care Experience

Benefits of Formal Care. Primary family caregivers sometimes personally knew the formal care providers. Hospice care was frequently helpful and supportive for primary family caregivers. Although the data did not reveal any differences in hospice care services from those commonly reported in the literature about the family experience of hospice nursing, a unique aspect of rural hospice care was that hospice nurses were frequently known to the primary family caregivers and older adults or their friends. The aspect of finding a “friend” as a formal caregiver was not uncommon in this rural setting. One woman believed she had extra support from hospice: “My friend, J.W., has worked in hospice, so I felt like I had an in with her. If I had problems I could just call her.”

Care providers from other agencies were also frequently known to the primary family caregivers. Being acquainted with care providers from another context was a common experience. One woman spoke about her mother-in-law, who needed care. Her mother-in-law knew the caregiver “because she worked in home health [when] my grandmother was caretaking her mother-in-law who was a home health patient. So, my mother-in-law knew them that way, before we ever met.”

There was also flexibility in organizational support. Organizations and agencies sometimes went beyond their normal efforts or were willing to bend the rules or policies to provide help. One family lived nearly 50 miles out of town, and the family caregiver said:

Hospice was so good…. They would call and say, “Does your grandma need anything today?” I’d want a shampoo, to shampoo her hair without having to bathe her. And they bought that in town [50 miles away] and just brought me the receipt so it was taken care of…. Anything I needed, they were there.

A personal connection to the dying person could result in personalized help from an organization. One woman talked about her husband, who wanted to do things for himself although his memory was failing: “The pharmacist would always take him out and help him find his car, because they really liked him.”

Benefits of Informal Care. Most primary family caregiver participants described how other family members provided a range of support services, including help with physical care, emotional support for the dying person and the family caregiver, and instrumental support such as locating resources or obtaining information. While our analysis did not focus on comparisons between caregiver types, spouses described the support provided by their adult children or grandchildren, and adult child caregivers identified siblings, grandchildren, or other relatives (e.g., cousins) who assisted with some of the care. Although some families were geographically dispersed, it was not unusual for several generations of extended families to live in the region and provide assistance. One caregiver said: “My daughter who lives next door helped a lot with shopping, cooking, and stuff like that.”

Church communities also provided many types of supportive services to primary family caregivers involved in end-of-life care. One woman recalled, “Two couples [from church] would help me get him to dialysis and back three times a week…. After he died, the church brought food, and talked and things.”

Prayer was a frequently offered support service. As a woman who was caring for her mother said:

I have a Bible study group. They came and brought food to R. and me. R. was on the prayer chain, of course. And they made her a prayer quilt…that she had over her until she had to go to the hospital.

Although this support is not unique in the literature, church support was frequently mentioned by participants as an important aspect of their rural life.

Neighbors and friends, seeing what needed to be done, provided a range of supportive services and often pitched in with chores. Managing the farm property as well as end-of-life care was sometimes possible through the help of neighbors. One woman described her neighbors’ help with property upkeep:

My barn leaked. Three different people worked on that barn trying to get it roofed… These people across here, you couldn’t ask for anybody better, all you gotta do is say it, I need something. They’re here.

Sometimes neighbors provided respite so the family caregiver could manage farm chores. One man relied on neighbors to stay with his dying wife while he worked the farm. His daughter said that “while there were friends who offered to care for the cows…he just needed someone there to watch mom while he went outside.”

Family caregivers also used informal relationships to locate needed services and guidance, including how to use formal systems. One caregiver noted: “My friend, L., she’s a nurse…. I talked to her a lot. Anytime I had a question, she was very good at answering my questions. I never felt like I was bothering her.”

Neighbors continued to offer support after the death had occurred. One new widow talked about ongoing help from her neighbors:

And the neighbors have been wonderful and still are. We have a young couple that lives across the street. He’s [the husband] just incredible. “How’s your wood supply? You need more wood?” That’s the joy of this small town because everybody takes care of everybody else.

Challenges to the End-of-Life Care Experience

Challenges in Formal Care. Service boundaries led to limited hours or availability of some formal services. For example, obtaining services and medical equipment after business hours and on weekends could be very difficult. One primary family caregiver needed medication on a Sunday, which proved to be impossible to obtain: “The nurses told me that in this whole town there is not a pharmacy open on a Sunday. If they need any meds they have to go to the hospital and see if they have it.” Another woman was unable to get basic medical supplies to support her husband at home:

He got to come home on Monday afternoon and we called hospice, but hospice said that it was so late they couldn’t get the oxygen guy out here or the people with the bed and such. So he slept in that chair and I slept on the couch.

Hospice care was limited to a distance of 40 miles from the major town in the county, and many residents lived beyond the service boundaries. For families outside the boundaries, the distances meant that hospice nurses could not respond quickly to family needs or provide extensive services. One primary family caregiver reported that hospice nurses taught her family how to crush medications for a relative who had difficulty swallowing but would not visit on a frequent basis. As one family caregiver said: “When we would call, it was like, ‘Leave a message, we’ll get back to you.’ And when we finally got a hold of them, we were just told what to do on the phone. They didn’t bother coming out.”

Limited services put pressure on families and those who were at the end of life. One woman needed dialysis, which was not available at that time in the county. A family caregiver was taking her to another town for services 3 days per week but was unable to continue due to time and payment constraints: “She quit doing it because she wasn’t getting compensated to drive M. in, and for the time. And it takes 4 to 6 hours [for travel]. And she’s only getting paid half a day.”

Paid, qualified, in-home caregivers were difficult to find in very rural areas. The scarcity of caregivers was related to the low numbers of area residents, the distance a paid caregiver needed to travel, and the lack of training in end-of-life care available to potential caregivers. A common experience was described by a primary family caregiver who lived more than 40 miles from the nearest town and had four caregivers for a dying older relative. As they lived so far from town, they needed to find a caregiver to live in the house, “somebody who fits into the rest of the family.” The first two caregivers did not know what needed to be done, and one of them brought her boyfriend to the house:

She said that they were praying with L. for healing. While I’m all for praying, but we didn’t know who the heck the guy was, and bringing him into L.’s bedroom…without our permission or knowing what’s happening…. The next [caregiver] was nice enough but she was kind of abrasive. It was kind of good in the beginning because she knew everybody around here. She gave us all the gossip of what was going on in the neighborhood, you know. But she was really outspoken. It was grating after a while.

The fourth caregiver was “the perfect caregiver…. She would do everything.... She was real good at taking L. for walks around the ranch, hold her, talk with her, and sing and pray.”

Continuity of primary care could be difficult with so few physicians in the region. One dying person did not have a personal physician for the last 5 months of his life: “In fact, Dr. G. left, and then the doctor from hospice came once to sign papers…. Otherwise, it was just me talking to the nurses, and the nurses talking to the doctor and getting whatever prescription was necessary.”

Medical care was also limited due to a lack of knowledge about end-of-life care and a lack of specialists. For example, a single physician provided chemotherapy treatment in the county, and no pulmonary specialists or geriatricians were in town. As one primary family caregiver said:

I wish there were some geriatric doctors in town. I wish there was some training or some teaching on how to deal with dementia or how to deal with all these things…. There’s really nobody that really knows anything about that kind of stuff.

Provider attitudes could be positive or negative toward the family caregivers or the dying family member, but families had little or no choice if they did not like the provider or questioned the provider’s care.

Symptoms were sometimes poorly managed because formal caregivers did not have a good understanding of how to manage symptoms at the end of life. Family caregivers could be very frustrated by their dying relative’s suffering but were unable to get what they considered to be adequate relief. An example was a 90-year-old woman within 2 weeks of her death with intractable pain who was not given adequate morphine because “she might get addicted.”

Challenges in Informal Care. A common concern for family caregivers was not knowing what to do or finding that care was not possible or practical for them to do. As one son said of providing care for his parents:

I know other people who are caregivers for friends and they explained to me how the process goes and they made it sound simple. But when I got down there to do it, it seemed like it wasn’t really a practical thing for me to even to attempt to do being that I was the son of the people I was caring for.

Family caregiver stress was common. One participant was a nurse, and the family looked to her to provide much of the care management for her grandmother. However, she noted:

But the demands of having to answer all the medical questions ’cause I’m the nurse in the family, having to take care of all the medical issues, and then to physically take her to appointments and stuff…. How did I do it? I don’t know, you just do it I guess, I don’t even know how you figure out to do it. Instead of going shopping after work you go to grandma’s. Or on your way to work, you just leave a half hour early and stop by grandma’s and take her an orange or her peaches that she wants.

Discussion

The findings from this study indicate that the rural environment provides both benefits and challenges for end-of-life care. Rural areas differ in their characteristics, and these findings are best understood as reflecting the experiences of primary family caregivers from one rural, agricultural county in the Pacific Northwest. The benefits included personal knowledge of formal care providers; flexibility in organizational support; and support from other family members, church members, friends, and neighbors. Personally knowing the paid care providers gave primary family caregivers a sense of familiarity with those who provided formal care for them and the dying older adult. This sense of connectedness may be a benefit of rural residence and is characteristic of rural life (Baernholdt, Jennings, & Thornlow, 2010; Cartwright & Kayser-Jones, 2003). Experiences with informal support were commonly described by participants. Neighbors and church members were willing to travel long distances to help obtain services and assist with farm activities. Similar experiences have been reported in other studies of rural care (Goins, Spencer, & Byrd, 2009). An unanticipated finding was that formal caregivers and organizations were sometimes flexible and creative to meet client needs. The literature review by Robinson et al. (2009) on rural palliative care did not mention finding these organizational factors that may enable families to keep a dying person at home. Further research in this area might lead to better modeling of end-of-life care services in rural areas.

The challenges for primary family caregivers included difficulty accessing qualified formal caregivers and lack of continuity of care. The lack of services led to people traveling long distances to receive specialized care or to accepting local care from providers with limited knowledge about health issues, including care at end of life. This finding is consistent with national reports that lack of access to care is the primary health care issue in rural areas (Nelson & Ginterich, 2010). The inability to find unlicensed assistive caregivers who have even rudimentary training in end-of-life care has not been widely reported, although others have commented on the lack of qualified nurses (Buehler & Lee, 1992) and the lack of adequate training in end-of-life care (Crawford, 2000; McCann et al., 2005). Training in rural areas that assists formal as well as family caregivers would be very useful for those at the end of life and their families.

Magilvy and Congdon (2000) reported gaps in formal care associated with a lack of knowledge of community resources by families and health care providers. In this study, family caregivers reported being aware of resources but were not always able to access them, particularly if they were living outside of service boundaries. This finding reinforces the challenges related to lack of access to services.

Rural family caregivers are stressed by the demands of caregiving. While informal care was common among the participants in this study, problems with lack of knowledge about caregiving, exhaustion, and burnout are commonly reported in the literature (Bainbridge, Krueger, Lohfeld, & Brazil, 2009; Fredman, Cauley, Hochberg, Ensrud, & Doros, 2010).

Commonalities between findings in this study and studies conducted in urban settings include support from family members, church members, neighbors, and friends; lack of continuity of care; and challenges in informal care. Although some types of support services needed by rural family caregivers are also needed by urban caregivers (e.g., help with physical care of the dying older adult), other types of support areas are different (e.g., help with livestock). Both rural and urban family caregivers provide much of the care that takes place at home (Wilson et al., 2006); however, in rural areas, families travel extensively for physician visits, hospital care, or other services (Goodridge, Lawson, Rennie, & Marciniuk, 2010). Lack of continuity of care in rural areas may be related to fewer local resources and specialized care, while lack of continuity in urban areas may be more related to transitions in care (Back et al. 2009; Naylor & Keating, 2008). While this study provides preliminary information about family care in one rural county, studies that focus on specific types of family member-decedent relationships, specific terminal diagnoses, and on other types of rural settings are clearly needed.

Limitations

This study reflects the end-of-life experiences of primary family caregivers who volunteered to participate. The participants were recruited through letters mailed to primary family caregivers by hospice and funeral services and may not represent the experiences of caregivers who do not receive these services. The study did not address end-of-life experiences from the perspective of the older dying adult, other family members, or formal caregivers. Addressing the experience from multiple perspectives is important in understanding how end-of-life care is delivered in rural settings.

Implications and Conclusion

These findings reflect key concerns identified by a sample of 23 primary family caregivers regarding end-of-life care for their older relative in a rural setting. Identifying these concerns is an essential first step in understanding how end-of-life care occurs in rural communities and developing targeted interventions to improve care. Some of the challenges to providing comprehensive end-of-life care services cannot be easily changed. Reaching people who are geographically distant from existing services is difficult under the current health care system. Use of video technologies may be one strategy to address some of the isolation from providers experienced by caregivers. Less-than-optimal end-of-life care happens outside of service area boundaries in rural settings, and solutions clearly require a community systems approach such as developing structures and processes that maximize communication across various service organizations.

The findings suggest that primary family caregivers in rural settings are very involved in providing care at the end of life for older people. Some of this care is supplemented by neighbors, friends, and other volunteers. Yet, expertise in end-of-life care is not common among these groups of people. Studies that examine end-of-life care in rural settings from a community perspective are needed. What do local formal providers and other organizations perceive to be strengths, limitations, and gaps in existing services, and what strategies might facilitate more comprehensive services, particularly in regions beyond formal service boundaries? Additional research is needed to understand the complexity of end-of-life care in rural settings and ways to improve the quality of this care.

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Demographic Characteristics of the Participants

Primary Caregivers (n= 23) Decedents (n= 23)
Characteristic Mean (SD), Range Mean (SD), Range
Age (years) 60.52 (SD = 15.54), 30 to 94 81.52 (SD = 10.31), 60 to 97
Length of providing care (months)a 28.36 (SD = 32.66), 0.5 to 120
n(%) n(%)
Relation to dying older adult
  Adult child 13 (57)
  Spouse or partner 8 (35)
  Otherb 2 (9)
Race
  White 22 (96)
  American Indian 1 (4)
Sex
  Women 16 (70) 10 (43)
  Men 7 (30) 13 (57)
Cause of death
  Cancer 12 (52)
  Heart disease/failure 5 (22)
  Failure to thrive 4 (17)
  Alzheimer’s disease 1 (4)
  Lung disease 1 (4)
Setting where death occurred
  Home 12 (52)
  Adult foster home/assisted living facility 7 (30)
  Skilled nursing facility 3 (13)
  Hospital 1 (4)
Authors

Dr. Hansen and Dr. Cartwright are Associate Professors, Oregon Health & Science University, and Dr. Craig is Associate Dean and Professor, University of Portland, Portland, Oregon.

The authors disclose that they have no significant financial interests in any product or class of products discussed directly or indirectly in this activity. This research was funded by a grant from Betty Gray Rural Health Development Fund at Oregon Health & Science University, Portland.

Address correspondence to Lissi Hansen, PhD, RN, Associate Professor, Oregon Health & Science University, SN-6S, 3455 SW U.S. Veterans Hospital Road, Portland, OR 97239-7783; e-mail: hansenli@ohsu.edu.

Received: May 18, 2011
Accepted: November 29, 2011
Posted Online: December 29, 2011

10.3928/19404921-20111213-01

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