JOURNAL OF PALLIATIVE MEDICINE Volume 13, Number 5, 2010 Mary Ann Liebert, Inc. DOI: 10.1089=jpm.2009.

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Vigilant at the End of Life: Family Advocacy in the Nursing Home

1 Renee R. Shield, Ph.D., Terrie Wetle, Ph.D.,2 Joan Teno, M.D., M.S.,2 1 Susan C. Miller, Ph.D., M.B.A., and Lisa C. Welch, Ph.D.3

Abstract

Background: Increasing numbers of Americans die in nursing homes. Little is known about the roles and experiences of family members of persons who die in nursing homes. Methods: The authors conducted 54 qualitative telephone interviews of close family or friends of individuals who had spent at least 48 hours in the last month of life in a nursing home. Respondents had earlier participated in a national survey that found 587 of 1578 decedents (37.2%) received end-of-life nursing home care. In qualitative interviews respondents described the last year of life, focusing on the nursing home experience. Interviews were analyzed by a multidisciplinary team to identify key themes of areas of concern. Results: An important interview theme revealed families often felt the need to advocate for their dying relative because of low expectations or experiences with poor quality nursing home care. They noted staff members who did not fully inform them about what to expect in the dying process. Respondents reported burden and gratication in care they themselves provided, which sometimes entailed collaboration with staff. Interviews also identied ways hospice care impacted families, including helping to relieve family burden. Conclusions: End-of-life advocacy takes on increased urgency when those close to the dying resident have concerns about basic care and do not understand the dying course. Enhancing communication, preparing families at the end of life, and better understanding of hospice are likely to increase family trust in nursing home care, improve the care of dying residents, and help reduce family burden.

Introduction

any Americans are introduced to the nursing home when their relative dies there. The unfamiliarity of the institutional setting often creates anguish for families. The uniqueness of a loved ones death starkly contrasts with the regular occurrence of death in nursing homes.1 Fully 25% of older Americans experiencing nontrauma-related deaths now die in nursing homes, largely because they are older and frailer, and exhibit more dementia.24 While family caregiving of older persons has been amply detailed,58 family members roles and how they experience their loved ones end-of-life care in nursing homes has been little described. Illness trajectories of terminally ill nursing home residents are often variable and difcult to predict, with the terminal phase for some indistinguishable from a long, slow decline in function.9 Obstacles to palliation include the difculty in determining who is dying and when to shift from curative to palliative care, in part because recognition of the terminal
1 3

phase often comes only after a health crisis.4 Such problematic interpretations of disease course, while a routine feature of nursing home care, may add to family burden. Additionally, insufcient discussion of goals of care, including end of life care, in nursing homes may compound family frustration and pain at the end of life.10,11 A qualitative study was designed to explore the results of a prior quantitative national mortality follow-back survey of end-of-life care that focused on family members perceptions of the end-of-life care of their deceased family member.3,12,13 Design The qualitative study was a follow-up to a quantitative survey of 1578 persons that explored end-of-life experiences of persons dying in varied settings, 587 (37.2%) of whom had spent at least 48 hours of the last month of life in a nursing home.3 The second study consisted of in-depth qualitative telephone interviews with 54 original study participants

Center for Gerontology and Healthcare Research, 2Department of Community Health, Brown University, Providence, Rhode Island. Department of Sociology and Criminal Justice Studies, Southern Illinois University, Edwardsville, Illinois. Accepted December 17, 2009.

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574 whose loved one received end-of-life care in a nursing home and who had originally agreed to a second interview.12 To better understand respondents perceptions of hospice, the qualitative survey oversampled for decedents receiving hospice services in the nursing home (42.6% of decedents in the qualitative interview versus 23.6% in the rst survey group). Institutional Review Board (IRB) approval was obtained from Brown University and each participating state. In this second telephone interview respondents were asked to describe the decedents last year and last week of life, including what went well and what could have gone better12 using the interview guide depicted in Table 1. Interviews were recorded, analyzed, and coded by a multidisciplinary research team and entered in Atlas.ti ethnographic software (www.atlasti.de=). Following rigorous qualitative inquiry including repeat readings and a thorough process for interpreting narratives,1416 authors read each transcript several times, marking transcripts with comments and suggestions for codes. They met in lengthy weekly analysis meetings to reconcile interpretations of the narratives and assign codes to text; discussions determined how codes were related, generated themes, and suggested practice implications. For context, the team also referred to the preceding quantitative survey for comparison of each decedents story. Table 2 describes these methodological steps. Results While 37.2% (n 587) of decedents in the rst study spent at least 48 hours in a nursing home during their last month of life, their individual lengths of stay varied. More than one third of the decedents spent more than a year in a nursing home, while 1 in 7 were in a nursing home less than a month prior to death. Respondents in the qualitative study and decedents in both studies who spent a minimum of 48 hours in a nursing home during their last month of life were similar in

SHIELD ET AL. gender, racial distribution, and marital and educational status, with respondents in the qualitative study having somewhat more education than those in the quantitative survey.12 Decedent and respondent characteristics are presented in Tables 3 and 4. In narratives lasting from 35 to 90 minutes, respondents described their family members dying experience and noted areas of good care and concerns in care. Major themes from their narratives are listed in Table 5 and have been discussed elsewhere12,13; one theme was about the perceived need to promote improved care for the dying resident, activities we term advocacy. The subject of advocacy emerged frequently and spontaneously in numerous interviews and was vividly described; this nding was especially noteworthy since no interview question targeted this area. Advocacy subthemes are listed in Table 6 and are more fully described here. Why Advocate? Respondents described various motivations for assuming an advocacy role in the nursing home. Fears of poor quality Some respondents expected poor nursing home care and were girded to advocate from the start. A brother of a 78year-old woman said, I think that nursing homes today are . . . big business . . . You could stay at the nest penthouse hotel for what they charge you . . . what you get, it aint that much . . . its like a big warehouse operation. The son of a 75-year-old man noted how a person cannot expect . . . to be staying at the Hilton . . . The short staff, overwork, poor pay, and marginal people. Its the same old story in most every nursing home. He said his father had heard the bad horror stories . . . [and] . . . lowered his expectations. Whether their perceptions were justied or not, these respondents did

Table 1. Sample Questions from Qualitative Interview Guide Please tell me about (HIS=HER) and your experience in the last year or so of (HIS=HER) life. Was there a time when you or [NAME OF DECEASED] realized that [HIS=HER] health was failing? If yesTell me more about that. Please tell me about the last week or so of [NAME OF DECEASED]s life. Is there a particular conversation with a health care provider that stands out? (Probe) Was there a conversation about [NAME OF DECEASED]s wishes (in terms of medical care) at the end of life? Was there ever a period of time when [NAME OF DECEASED] was in pain? (Probe: e.g., how was that managed?) What was [HIS=HER] experience at the nursing home? Did you have any concerns about [NAME OF DECEASED]s care at the nursing home during that last year of life? Can you tell me more about that? Was hospice involved in the care of [NAME OF DECEASED] while (he=she) was in the nursing home? If Yes: How did you and=or [NAME OF DECEASED] nd out about hospice? Did the nursing home staff present the option of hospice or palliative care to you and=or [NAME OF DECEASED]? How was the decision made to involve hospice? Once the decision was made, how long did it take before [NAME OF DECEASED] was receiving hospice? How did the care go? If No: Did you and=or [NAME OF DECEASED] ever consider hospice or palliative care as an option? Did a nursing home staff member speak to you and=or [NAME OF DECEASED] about the options of hospice or palliative care service? Why did you and=or [NAME OF DECEASED] decide not to use hospice?

VIGILANT AT THE END OF LIFE Table 2. Methods and Analysis Steps for Qualitative Study Pilot interview stage The pilot interview was developed to follow up national quantitative survey questions Five pilot telephone interviews were conducted to test interview guide The interview guide was modied by pilot interview experience Interview stage Fifty-four telephone interviews were conducted, audio-recorded, and transcribed Each transcription was checked and corrected by its interviewer Analysis stage Analysis team members individually read and coded all transcripts Weekly team meetings were held to discuss and reconcile codes for each transcript Two team members entered code-reconciled transcripts into Atlas.ti software In team meetings qualitative interviews were triangulated with quantitative surveys Discrepancies between qualitative interviews and quantitative surveys were highlighted Team meetings were held to determine themes from codes In team meetings members discussed and reconciled competing interpretations of data Team meetings were held to determine clinical implications from themes Table 3. Characteristics of Decedentsa Characteristic

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Quantitative Qualitative survey study

Number of Decedents 1578 54 Spent at least 48 hours in 587 (37.2%) 54 (100%) nursing home in last month Mean age 83.2 years 83.9 years Gender (female) 67.2% 70.4% Race White (non-Hispanic) 90.5 77.4 Black (non-Hispanic) 5.2 11.3 Hispanic 2.9 7.6 Asian 0.9 1.9 American Indian=Alaskan 0.5 1.9 Marital status Married 23.0 24.1 Widowed 60.0 59.3 Divorced=separated 10.7 9.3 Never married 6.4 10.8 Education Less than high school graduate 42.2 47.2 High school graduate 31.6 26.4 Some college, graduate or more 26.1 26.5 Cause of Death Stroke 12.8 1.1 Cancer 15.8 22.2 Heart disease 46.5 22.2 Dementia 12.8 27.8 Hospice involvement (yes) 23.6 42.6
a

Unweighted comparisons.

not consider a nursing home a place for personalized quality care. Negative experiences Some instead related how their more neutral initial expectations transformed them into advocates, given negative experiences encountered over time. One daughter provided this example: They had her on . . . a portable oxygen tank, and it had run out, and they hadnt even come in to change it . . . until I went in and complained. Another reported, His bed was not clean . . . They didnt help him bathe . . . And they wouldnt answer when you called . . . Another wished she had been more assertive for her dying father: . . . I blame myself a lot . . . but you think that these people know more of what theyre doing. The following section summarizes some ways respondents attempted to obtain information and impact the care their loved ones received when they were dying. Family Concerns and Responses at the End of Life Getting basic information Respondents noted that they encountered barriers when seeking information and wanting to know what to expect about residents conditions. One reported that staff members . . . never said anything about his condition . . . I was the one who always went up to the doctor and said, Whats going on? Another wished for communication when her mother was dying: I did not know what to expect . . . But I didnt get anything direct from the nursing home that said, Now, your

mother is slipping away. This is how long we think she might last. The wife of a resident said that she had to chase [the physician] down to obtain basic information from him. Maintaining vigilance Family members insisted that being physically present helped ensure basic care. One strategy was frequent, unscheduled visiting and astute monitoring. A son said his 94-year-old mothers satisfactory care required my constant attention and . . . constantly being there . . . I could go by as I went to the grocery store and . . . just pop in and out . . . The

Table 4. Characteristics of Respondentsa Original quantitative survey 14.0% 43.0 9.5 6.3 27.2 68.9 8.5 27.0 65.1 Follow-up qualitative study 14.8% 40.7 3.7 5.5 35.3 64.8 3.7 24.1 72.2

Characteristic Spouse=Partner Son=daughter (or in-law) Parent Sibling Other (primarily nieces, nephews, grandchildren and friends) Gender (female) Education Less than high school graduate High school graduate Some college, graduate or more
a

Unweighted comparisons.

576 Table 5. Key Themes from Qualitative Study

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Theme 1: Symptoms, needs and illness trajectories of dying persons are insufciently recognized by professionals, resulting in missed opportunities for advance care planning and palliative intervention. Theme 2: Low expectations of nursing homes and experiences with poor quality of care turn many family members into vigilant advocates for their dying loved ones. Theme 3: Physicians are viewed as missing in action in nursing homes. Theme 4: More and better trained staff desired by respondents. Theme 5: Task-focused regulations add to resident and family burden. Theme 6: Hospice services often enhance the care of dying persons in nursing homes, but referral is frequently made late in the illness or not at all, preventing full benet from such services, and conicts are sometimes reported between hospice and nursing home staff.

wife of a 76-year-old man with cancer said good care was because of her . . . being there and checking it out all the time. Another described contentious interactions with staff by, I didnt go looking for a ght, but I sure was there enough to keep an eye on things. The son of a woman with renal failure advised . . . the more that a family goes to a nursing home . . . theyre not going to be neglected . . . One son justied his constant monitoring: . . . if you didnt stay on them, they wouldnt do nothing . . . Family vigilance could be elaborate. The family of a dying 76-year-old woman used a shared journal to maximize company and communication. The niece said, They did pay more attention to her because we were there. Nutrition and personal care Respondents reported their perceptions of inadequate, delayed, or improper nutrition for their dying loved ones. One respondent said the staff insufciently helped her 87-year-old grandmother eat. A 75-year-old residents son noted, You got to give a little effort, and they werent. Theyd say, Do you want to eat?. . . They might lift the spoon and say, Ah, you wont eat . . . A daughter said food was placed . . . on a table at the foot of their bed. And my mom couldnt even turn over so you know she couldnt get her food. One thought food aspiration caused her 83-year-

old aunts death: . . . they put feeding precautions that she needed to be sitting up to be fed, and it was difcult . . . to get them to feed her the way she was supposed to be fed . . . While respondents sometimes attributed their loved ones problems with nutrition to lack of staff attention rather than to their family members terminal condition, narratives do not indicate whether respondents received education about this important distinction. Respondents reported performing daily personal care tasks, including feeding, walking their loved one to the bathroom, and laundry. They insisted assertiveness was necessary. The daughter of a 71-year-old with lung cancer stressed: I really had to . . . be a little bit of a bitch, if you know what I mean, in getting to speak to someone. Monitoring of residents changing condition Respondents expressed concern when staff members seemed inattentive to changing or deteriorating medical conditions. The daughter of an 84-year-old woman related, Were not certain if they were checking her temperature . . . she ended up getting a kidney infection . . . we would even say . . .She seems to be less alert. The condition of a 99-year-old man worsened without apparent staff notice; his niece reported she had been right on them although . . . they just kept shoving things off . . . As her uncle was dying, she said they suddenly became apologetic: Oh geez! I didnt realize how bad he was. She related, Well, youre with him . . . constantly. Nobody know how bad he is? As reported elsewhere, respondents also reported little or no contact with the nursing home physician and devised compensating strategies.13 Beyond relating these activities, respondents described how they felt, noting burdens as well as gratications. Burdens of family advocacy Some described the burden of losing a positive relationship with staff members. The daughter of an 89-year-old woman said: I had a couple of them be kind of hateful to me . . . They were complaining about [her activities] . . . Travel to the facility could be onerous. Prior to her death, the niece of a 76-year-old woman noted, I was 240 miles from her and . . . [some family members] were a little bit closer but they work . . . [they] took a turn on the weekends . . . So she was well cared for but not because the facility gave it to her. There could be additional duties at home. The wife of a 76-year-old man with kidney cancer called family members daily after leaving the nursing home: . . . The telephone rings

Table 6. Themes of Family Advocacy Why advocate? Factors that triggered the advocacy role Fears of poor quality of care Negative experiences in the nursing home Family concerns and responses at the end of life Getting basic information Maintaining vigilance Nutrition and personal care Monitoring of residents changing condition Burdens of family advocacy Adversarial relationships with staff Time and effort expended Benets of family advocacy Improved care for loved one Personal gratication Collaboration with staff, informally and in care planning meetings Impact of hospice care Partnership with family members Extra eyes and ears Concerns regarding hospice

VIGILANT AT THE END OF LIFE and everybody . . . wants to know how everything is. And then youre so nervous you cant really sleep . . . I was about ready to drop too. Financial and administrative matters accumulated, and sacrices were made. Said one, [The burden] was huge . . . I abandoned my job and pretty much my family and everything . . . Benets of Advocacy Nonetheless, respondents also reported personal gratication. Asked if he felt burdened by the many tasks for his dying father, one son replied, Nah, heck no. Family members related gratication with doing the right thing. They reported that care improved because of their efforts. Although some respondents reported negative relationships with staff, others instead noted increased collaboration because of their advocacy activities. The son of a 72-year-old man noted staff members responsiveness to the familys attention, saying, . . . we would go there and realize that there was something wrong . . . we would bring that to the nursing home staff attention and then they would look a little bit closer and see that indeed that there was something wrong. Another family member successfully sensitized staff members to her relatives specic care needs because . . . We know her body very well. Weve spent a long time with her. Some spoke approvingly of their involvement in care planning conferences; one advised that families attend these meetings to . . . make sure that you know whats going on . . . thats a time to . . . address any questions that you have . . . I went to all of them. Another respondent noted, They . . . discussed all of the situations about him, not just medical but social . . . like [how] to improve his condition . . . getting him to swallow better or whatever . . . And I was really impressed with that. Impact of Hospice Care While hospice services were generally valued by respondents whose family member received them, missing or late referrals, misinformation about the hospice benet, and inadequate collaboration between the facility and hospice were problems some respondents noted. Partnership with family members Positive reviews especially centered on symptom relief and emotional support for the dying person and family. The niece of an 86-year old woman said, They were kind and loving and treated my mom like there was no one else in their lives at that moment. They were there specically for her . . . One family member reported how hospice helped ease the dying experience, We felt like her passing was a gentle passing . . . the [hospice] people we had were great. Extra eyes, ears, and care Hospice workers also seemed to provide added surveillance, according to family respondents. . . . [Hospice] was kind of a watchdog over my mother and someone I could talk to . . . what they provided was just a couple more pair of eyes watching over her. Several appreciated the extra communication and the improvement in some end-of-life treatments. One said, They had counselors in talking with her every

577 day . . . there was a tremendous amount of support available for both her and I. Another noted, They were there . . . right on the money, right on time . . . to clean her up and turn her over and make sure she was clean. Hospice seemed to relieve some of their need to advocate; they perceived their work to be shared. Concerns regarding hospice However, late referral to hospice was considered a problem by some. We did the paperwork, a daughter said, and the nurse from hospice came . . . just right after he died. Sometimes there were misunderstandings about the hospice benet. . . . My impression of hospice was that someone would be there. Well, it was . . . not even a couple hours a day. It was only a couple hours a week . . . said the daughter of an 81year-old man with dementia. Others cited poor collaboration between hospice and the nursing home as well as perceptions of contrasting goals; one characterized her mothers facility as having a cover your ass philosophy whereas hospice stressed, in her view, Leaving this world in the most dignied, respectful, and painless way. Discussion and Clinical Implications Increasingly, persons die in nursing homes. These interviews indicate that family members advocate because of lowered expectations or negative experiences with nursing home quality. In often vivid terms respondents described disbelief that watchful assertiveness was necessary for basic care, and they related that without persistent advocacy, worrisome situations would be inadequately addressed. As in other reports of poor care8,17,18 and the impact of serious spousal illness on caregivers,19,20 they cited a need for better information and were concerned about personal care and insufcient monitoring; they devised strategies to redress problems. Despite burdens, respondents also related that they received gratication from advocacy. While families did not cite a specic hospice advocacy role, the provision of hospice services seemed to alleviate family burden for care improvement. Family advocacy efforts may improve the experiences of dying patients; this is a subject that deserves further research. Family concerns suggest practical implications. Upon admission, nursing homes may be perceived as strange, dangerous places. Residents and families might benet by an initial meeting with key staff members to reduce the jarring transition, foster communication, understand care practices and routines, clarify roles and encourage collaboration and continuity of care. Because the trajectory of death is often difcult to ascertain, effective ongoing communication between providers and family members is vital.21,22 Staff members should be trained to recognize terminal decline, collaborate about the goals of care, attend to family concerns about changes in resident condition, understand the needs of dying nursing home residents and their families, and provide appropriate hospice referral.911,23 Informal and formal partnership is an untapped resource,24 as initiatives in the culture change movement have indicated.2528 Nursing homes can facilitate family attendance and input at care planning meetings by exible scheduling, telephone conferencing, and receptiveness to family perspective.

578 These ndings support research that nursing home care improves when hospicenursing home collaboration is strong.29 Families and nursing home staff need a clear understanding of the hospice benet, including a better appreciation of timely referral. Hospice and nursing home staff can interact more productively when hospice understands nursing home care routines and when hospice and nursing home staff roles are clearly delineated.30 Several limitations of this study are noted. The nature of sample selection for qualitative interviews limits its generalizability. Respondents may have had strong positive or negative feelings regarding the end-of-life experience, and the time span between death and interview (as much as 2 years) may have hindered recall. However, respondents appeared to speak with clarity about their loved ones deaths, especially as each interview continued. More information about advocacy may have been elicited had an interview question targeted this area; however, the frequency with which respondents spoke of these activities without such a question is striking. Narrative interviews, particularly when conducted by telephone, offer challenges in interpretation, but the insight of family perspectives that ordinarily escape quantitative approaches are meaningful; further, some respondents welcomed the anonymity of the telephone interview. The multidisciplinary teams extensive consensus process in interpreting the narrative material helped clarify the ndings and mitigate subjectivity in interpretation. The active involvement of family members in their loved ones care at the end of life demonstrates that strong familial connections often persist in the nursing home. These family member narratives compel attention to improved care at the end of life. Overall positive hospice responses suggest the benet of timely hospice referral. Better collaboration between family members, nursing home and hospice staff can help achieve decent and compassionate care and improved end-oflife care experiences of nursing home residents and their families. Acknowledgments The authors wish to express their gratitude to the respondents who participated in the interviews that inform this study and to the staff of their academic institution for invaluable assistance in the preparation of transcripts. The quantitative survey and qualitative data collection on which this study is based were funded by The Robert Wood Johnson Foundation (grant No. 037188), and the analysis of the qualitative data was funded by the AARP. Author Disclosure Statement No competing nancial interests exist. References
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Address correspondence to: Renee R. Shield, Ph.D. Center for Gerontology and Healthcare Research Brown University Box G-121 (6) Providence, RI 02912 E-mail: renee_shield@brown.edu

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