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Responding to the death of a resident in aged care facilities: Perspectives of staff and residents
Geriatric Nursing 34 (2013) 41e46
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Feature Article
Responding to the death of a resident in aged care facilities: Perspectives of staff and residents Heather M. Tan a, *, Margaret M. O’Connor b, Teresa Howard a, Barbara Workman c, d, e, Daniel W. O’Connor f a
Palliative Care Research Unit, School of Nursing and Midwifery, Monash University, P.O. Box 527, Frankston, Victoria 3199, Australia Palliative Care Nursing, Monash University, Australia c Geriatric Medicine, Monash Medical Centre, Monash University, Australia d Rehabilitation and Aged Services at Southern Health, Melbourne, Australia e Monash Ageing Research Centre (MONARC), Australia f Old Age Psychiatry, School of Psychology and Psychiatry, Monash University, Australia b
a r t i c l e i n f o
a b s t r a c t
Article history: Received 2 March 2012 Received in revised form 1 August 2012 Accepted 6 August 2012 Available online 12 September 2012
A qualitative study using individual semistructured interviews was undertaken to explore the perceptions and experiences of 23 aged care residents with mild dementia concerning the deaths of coresidents. The views of 25 facility staff members were also explored. The study was based in 3 aged residential facilities in Victoria, Australia. Interview data indicated that residents and staff had differing views. Residents reported that the impact of the death of a coresident was much less than staff members thought. Residents generally wanted to be told about the death of someone they knew and considered attempts to hide the death and the removal of the body both unnecessary and disrespectful. Both groups agreed that the celebration of the life of a resident was important, although they differed in their preferences for the way this is done. These findings have implications for staff education and practice. Ó 2013 Mosby, Inc. All rights reserved.
Keywords: Aged care Mild dementia Resident deaths Resident views Staff views
1. Background It is anticipated, in Australia and in other Western countries, that the number of people living and dying in residential aged care facilities will increase in coming decades. Currently more than 162,000 Australians live permanently in aged care facilities that range in terms of level of support from independent living units to hostel accommodation (low-level care) and nursing homes (highlevel care). Most residents of low- and high-care facilities have dementia, often in combination with multiple medical comorbidities, and most will die within their facility.1 Facility residents have been specifically identified by the Australian government as requiring access to palliative care, including bereavement support for residents, family, and staff.2e4 The prevalence of grief among residents of aged care homes has been well documented, especially as it relates to loss of independence, of one’s own home, and of a sense of personhood and selfvalue.5-7 The bereavement experience for the older person occurs within the context of multiple and sequential losses,7 some of
* Corresponding author. Tel.: +61 3 9261 2067; fax: +61 3 9261 2086. E-mail address: [email protected] (H.M. Tan). 0197-4572/$ e see front matter Ó 2013 Mosby, Inc. All rights reserved. http://dx.doi.org/10.1016/j.gerinurse.2012.08.001
which may never have been acknowledged or resolved.8 Doka’s seminal work9 drew attention to the issues of disenfranchised grief in a particular relationship, or the loss itself, not being recognized or understood in particular settings. Depressive symptoms have been widely reported among residents of aged care facilities, issues of loss and grief cited as key triggers.10e13 Helping residents to adjust to these losses is complicated in many cases by the presence of dementia. Despite a reduced capacity for verbal expression, conscious recollection, and comprehension, people with any level of cognitive impairment, including mild dementia, can and do experience emotions such as loss and grief.14,15 Aspects of complex awareness may be retained into the later stages of dementia, and sensory and perceptual awareness can be detected even in people with end-stage disease,16 and thus it cannot be assumed that these people are unaware of what is happening to them. Cognitive impairment can, however, interfere with usual ways of understanding and coping with loss and grief.17,18 The experience of grief can be complicated by individuals’ inability to retain the information that someone close to them has died and by the failure of others to recognize and acknowledge their grief.19 Relationships with paid caregivers in aged care facilities are identified by residents as important in providing quality of care.7
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Also, caregivers’ role as facilitators is essential in the development of positive and meaningful peer interactions, contributing to an experience of thriving for nursing home residents.20 In view of the relationships developed between staff members and residents, the death of a resident will have an impact on both residents and staff. Both staff members’ and residents’ responses to the death of a resident may be influenced by factors such as levels of death anxiety and fear of death,21 as well as personal experience of death.22e24 It has been shown, for instance, that nurses with lower levels of disenfranchised grief had less fear of death and that fear of death and levels of death anxiety decreased with more experience of death, providing the grief associated with these deaths was acknowledged.21,24 Staff members’ attitudes toward the elderly and individuals with dementia25e27 may also have an impact on their response to a resident’s death. It has been demonstrated that nurses with a more positive attitude toward people with dementia are more likely to practice person-centered care.26 A positive attitude toward those with dementia or other mental illnesses was also found to be associated with increased levels of education about these diseases.25,27 In Australia, the trend to support older people in their own homes for as long as is practicable means that those admitted to residential care are now older, frailer, and more cognitively impaired than previously. Although these people are vulnerable, protectionism, however well intended, seems unwarranted, and it has been argued28 that the practice of withholding information contrasts with findings suggesting that full disclosure is beneficial to patients and relatives.29,30 Some evidence indicates that not only do residents want to be told about a death, but they would prefer to know in advance when possible so that they can say goodbye.31,32 Our study sought to address the issue of staff members’ approaches to death in Australian aged care facilities as part of a national program to expand access to palliative care to people living in rural areas and in aged residential facilities. To stimulate debate and to trigger questions about current care practices, we chose to focus on people with dementia, who now make up the majority of aged care residents. Ideally, studies should concern the full spectrum of dementia, but the research process entails gathering information from residents themselves, and only those with milder forms of dementia can give informed consent to this undertaking and take part in extended, reflective conversations.
dementia. They included a low-care facility (residents need some help with personal care) operated by a government provider in the outer metropolitan area of a large city (100 beds), a low-care facility operated by a government provider in a small regional town (20 beds), and a facility offering both high-care (residents need 24-hour nursing care) and low-care beds, operated by a not-for-profit organization in a rural area (total 51 beds, 40 of which are highcare beds). Each facility was staffed according to the Australian requirements for accreditation of aged care facilities, the staffresident ratio being higher as required in the facility offering high care. These facilities were selected to increase possible sample numbers and to explore the possibility of differences in the experience of staff and residents in different care settings. This study focused on residents with mild dementia who were able to participate in extended reflective conversations. Residents with a diagnosis of dementia who were regularly assessed using the Psychogeriatric Assessment Scale (PAS), a validated screening tool that taps new learning, language, general knowledge, visuospatial orientation and praxis,33 were considered. Scores range from 0 to 21 with 80% of dementia cases scoring 5 or more points (higher scores denote greater impairment). Residents who scored between 4 and 9 points (the range listed in the Australian government’s residential funding instrument as denoting “mild dementia”) were then rated by nursing staff using the memory, orientation, problem-solving, and personal care sections of the Clinical Dementia Rating (CDR).34 Sections concerning home and hobbies and community affairs are not applicable in a residential setting and were therefore omitted. Residents rated as mildly impaired using the standard CDR algorithm were then introduced by staff to the first author, who, having confirmed their ability to understand who she was, invited them to participate in the study. If they agreed, their family was informed of their decision. Finally, the Mini-Mental State Examination (MMSE)35,36 was administered to participants for the purpose of comparison with other studies. Following staff information sessions conducted by a researcher during staff meeting time, explanatory sheets were distributed and a project champion appointed at each facility. Some staff members indicated their interest in participating directly to the researcher at these meetings, whereas others later arranged an interview time through their local project champion, a staff member who had agreed to be the local contact person for the project.
2. Methods 2.2. Data collection and analysis Doka’s model of disenfranchised grief9 was the framework used to for structure the project. Doka suggests that disenfranchised grief occurs when the grief is not recognized or validated by the social environment of the grieving person. From this and other literature, issues about death and grieving seem to be generally avoided in residential aged care settings, especially in relation to staff perceptions that people with dementia do not experience grief. Although the project focused specifically of the experience of residents with dementia, those with moderate to severe dementia could not be included because of concern about their capacity to give informed consent and their ability to take part in an extended conversation. Following approval by the human research ethics committees of Monash University and the participating aged care provider organizations, this study used a qualitative design with individual semistructured interviews. 2.1. Setting and sampling Staff and residents were recruited from 3 facilities operated by different care providers, all of which cared for residents with mild
Of the 31 residents identified using the above procedures, 23 (74%) agreed to participate and signed consent forms, which included permission to audio-record the interviews. Semistructured interviews, ranging in length from 20 to 45 minutes were conducted in a private location chosen by the resident. Interviews were transcribed verbatim. A second round of interviews seeking more detailed information about key themes was subsequently conducted. A purposive sampling process was used to invite residents who had participated in the first round whose interview data indicated the possibility of exploring some areas of the study in greater depth. Eleven of the 14 approached (79%) agreed to a second interview, and signed their consent to be interviewed and audio-recorded. These interviews ranged in length from 30 to 45 minutes. Twenty-five staff members (42% of approximately 60 eligible) from participating facilities agreed to participate in semistructured interviews and signed their consent, which included permission to audio-record and transcribe interviews verbatim. The prompt interview questions are shown in Fig. 1. Staff interviews ranged in length from 30 to 60 minutes. All interviews were conducted by the first author who has considerable experience in this process.
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Fig. 1. Interview questions.
All interview transcripts were checked against the original recording for accuracy and then thematically analyzed with assistance of NVivo8 software. A coding structure was developed in analyzing the first 3 interviews in each set and continued and expanded as new themes emerged in subsequent interviews using the method of constant comparative analysis.37 This process of data analysis, which occurred concurrently with data collection, was reviewed and refined by the chief investigators as analysis progressed, ensuring qualitative rigor.37 Data saturation was reached for both staff and resident groups. Quotes from the transcripts that illustrated the identified themes were selected and are reported in the Results. 3. Results The majority of the 23 residents were female (56.5%). Fortyeight percent were aged between 80 and 90, 4 were over 90 and 2 (8.7%) under age 65. Their MMSE scores ranged from 15 to 27 with a mean of 22 points (SD ¼ 4.15). Most (74%) had lived at their facility for between 1 and 3 years. Of the 25 staff members, all but 3 were female. Six were registered nurses (university trained), 10 were
enrolled nurses (vocationally trained), 4 were personal care assistants, and 5 had other occupations (facility manager, 1; music therapist, 1; diversional therapist, 2; chaplain, 1). Four themes relating to the focus of this article were identified in the staff interviews and the first round of resident interviews. They were further investigated in the second round of resident interviews primarily because there were considerable differences in experience and perception between staff members and residents. These themes, discussed subsequently, not only have significance for how the death of resident is handled in residential aged care facilities, but were also apparently of considerable interest in both groups of participants. Resident responses are taken from both rounds of interviews. 3.1. The severity of the impact of a death on other residents Predominantly the view of staff (65%) was that residents feared death and found the death of another resident very confronting, reminding them sharply of their own mortality. Death is the next stage for everyonedthey all know that pretty well, so it stares them in the face. So there’s that not wanting to
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acknowledge it, but having to acknowledge it. The death of another resident is very confronting for them.
dies, although when it was someone they did not know, hearing through the grapevine did not cause much concern.
On the other hand, approximately 70% of residents said they did not worry about dying, that it was natural and inevitable because they were old. Some even expressed the view that they would welcome death soon, having lived a long life.
They definitely should tell you personally if you know them. It is disrespectful not to tell us.
Oh no, it doesn’t bother me being surrounded by the elderly and dying. I know I’m getting old. I mean that’s how it is, isn’t it? Aside from fear of death, already reported, staff indicated that the main impact of the death of a resident on other residents was at mealtimes (they always sit in the same groups) and in the small group activities. The biggest impact [of death of known resident] is at the dining room, where they sit. Not so much if they’re next door to that person, it’s funny, isn’t it, it’s mostly at meals. Only about one-quarter of residents acknowledged missing a friend when they died, but most of those also acknowledged that they knew the person was ready to go and were glad that he or she did not suffer anymore. I found that very hard to accept, and I do miss her but I really realized that she was ready to go. Other residents felt that they did not know people beyond acquaintance level, and so their death had little impact. Well it’s like ships that pass in the night you know, you don’t know them very welldyou know what I mean? 3.2. Telling residents about a death Overwhelmingly staff members were of the view that residents were only told about the death of another resident if they were either considered to have a relationship with that person or they asked where they were. This news was usually conveyed in a oneto-one conversation, although giving an answer was often avoided if the staff member considered that the resident asking would not be able deal with the death. Residents are told only if they ask. Yeah, we don’t sort of make it public. Sometimes we fluff over it if we think they can’t handle it. We always tell them if it was someone they were close to. We sort of have the view that they’re all here and most of them will only leave here once they’ve died, that you’re reminding them that when someone does die that maybe their turn is not too far away. Staff acknowledged the power of the “grapevine” in these facilities.
Oh I think it’s quite a good idea if they tell us in the dining room because it’s awful when people whisper to each other, and you know people are wondering what they’re whispering about and all that. Then it’s proper news and not just gossip. Any ambivalence about being told was related to not knowing people and therefore not being especially interested. I don’t see much point in them telling me when I don’t know the person, although if someone mentions it to me, it’s no drama. 3.3. The removal of the body About half the staff members indicated that bodies were removed discreetly and that this often involved escorting residents to their rooms first or shutting the doors of their rooms. The other half were unaware of the process in their facility. We make it discreet. We close all the doors whichever corridor that is in and then we take the ressies into another room where they can’t see what is going on. Almost all staff members were of the view that it would be upsetting for residents to see the body of another resident being removed. I couldn’t imagine anything worse than seeing a body go out the door. Of course there’d be nothing more upsetting to them than seeing that. Forty percent of residents indicated that they were aware that bodies were being removed “on the quiet,” and the rest indicated that they had not seen it and did not know how it was done in their facility. Sometimes they say they are shutting the door for a while and you know they are taking a body out even though they don’t say. It’s a bit silly really. Mainly it alerts people to what is going on, who probably wouldn’t have noticed. Almost half were quite sure that it would not bother them if they did see a body being removed and were almost unanimous in their view that residents would be a lot less upset about seeing a body removed than staff indicated. No [laughing], It wouldn’t bother me if saw a body removed. I’ve seen a lot worse than a body in a bag. I’ve already told my son that when I go I want a purple onednot that common green type!
The gossip line here works extremely well and so often I [staff member] will find out [about] the death of a client from a resident because I’m only here 2 days a week.
They also indicated that giving residents the option of having their door closed or going to their room may well be appropriate, but there is no need to go to extreme measures to avoid someone seeing it.
The majority of residents considered that they heard about the death of another resident most often through the grapevine, although some acknowledged that they were told individually, if they knew the person or if they asked about them.
If staff were concerned that someone who happened to be in the corridor would be upset, they could give them the choice of going to go to their room but many of them will realize what is going on anyway.
Residents don’t get told about a death usually. I found out about someone on my table from another resident who asked a nurse. Sometimes they come and tell us on the quiet if it is someone we know. About one-third indicated that they were unaware of any deaths in their facility. The general consensus among residents was that people do want to be tolddpreferably personally, when someone they know
3.4. Remembering and celebrating the deceased Staff generally recognized the importance of support for themselves in working in an environment where those for whom they cared inevitably died. Eighty percent found that talking with other staff members about a resident and his or her death gave them
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sufficient support. Approximately 40% found that attending a resident’s funeral was an important part of their grieving process. We generally . . . we talk amongst ourselves and each staff; we seem to know how much a resident meant to that staff member. Does that make sense? We all support each other and we go to the funeralsdif we’re allowed to the funerals, we go to the funerals. However, the view that residents would need or want to celebrate the death of another resident was not common. In some facilities, residents were occasionally assisted in attending a funeral. Occasionally a well-known resident’s life was honored by a special morning tea at which people felt free to talk about that person and his or her life. One incidence was reported of a guard of honor being formed to farewell the person as the body left the facility. About half the residents interviewed would like to have had the option of attending the funeral of someone they knew but acknowledged the difficulties of transport and mobility for many residents. I’d like to go to the funeral if I knew the person quite well, but it is not really an option for most of us. There was less interest in memorial services and memorial corners or books. I’m not too fussed about memorial services. I don’t go to that sort of thing. A memorial corner could be nice, but probably not a lot of people would use it. The idea of having a special morning or afternoon tea to chat about and remember a resident who had died was most favored. Most were open to other options such as a special plant or plaque in the garden, if that was what the deceased or their family wanted. It’s a good idea to have an afternoon tea where people can come and chat about the one who died. We sort of do that anyway at the dining table at meals.
4. Discussion Of particular significance in this study was the difference in the views of staff and residents. Generally there is a scarcity of studies specifically addressing these issues, although the apparent contradiction in staff concealing the sight but not the sounds of removing the body from the facility has been investigated.38 It was postulated that this was a professional strategy which enabled staff to manage the boundary between life and death. Different levels of death anxiety may be a possible explanation of the differing views of staff and residents on the impact of the death of a coresident and about the way in which a body is best removed. A variety of views are reported in the literature. Some investigators found that staff members who deal with death constantly show a reduced level of death anxiety,22,39 whereas others found that exposure to death had no impact on levels of death anxiety.40 It was suggested that death anxiety may be both age and gender related, with those exhibiting the highest levels being middle-aged women who significantly make up most of the staff of aged care homes.24 There is also evidence of cultural influences on levels of death anxiety, or at least on a willingness to discuss death before the event.40,41 As a very large number of cultures are represented in the Australian population, this is an increasingly relevant consideration. Higher levels of death anxiety
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may explain reported reluctance of some staff members to talk to residents about death42 and to avoid exposing residents to the death of another or to the removal of the body. Another reason for differences in the views of staff members and residents might be that residents had not been told about the deaths or had not retained this information. In one case, for example, a resident stated that there had been no deaths while she had lived at the home when in fact 2 people had died recently. It was not clear if news of the deaths had been withheld from her, perhaps because she had not been close to the people concerned, or if she had forgotten the news. Although the apathy and social withdrawal that are commonly associated with dementia43,44 might also have contributed to the apparent lack of impact of coresidents’ deaths, our data confirm that residents were often not told of deaths and therefore could not have responded to them. There are implications for organizational policy relating to how the death of a resident is addressed, how the body is removed, informing other residents, and how the life of the deceased is remembered. The range of individual resident needs, the influence of cultural backgrounds of both resident and staff populations, and the impact of age difference between staff and residents, are all likely to have an important influence on the development of such policies. Residents spoke of not knowing most of the other residents well and confirmed that their closest contacts were those with whom they shared a table at mealtime or those belonging to the same activity group. This sense of isolation of residents, while being surrounded by many people, was confirmed by the staff members, who considered the predominance of single bedrooms the main reason for this. Single bedrooms are now the norm in newer Australian aged care homes as part of a move away from the previous impersonal institutions. There is a risk, however, that residents will form fewer positive relationships with their peers and therefore experience less distress when coresidents leave. Although this spares them some distress, a reduction in the number and intensity of relationships between residents might further limit their quality of life in their months or years of residence in a home, an issue that may benefit from further investigation. The seeming overinsistence of a few residents that they did not have or need any friends in the home might represent an unconscious attempt at self-protection. It is possible that elderly people who have already experienced many losses in their lives, although not afraid of death, perhaps do fear additional experiences of loss resulting from the death of a friend in the facility, which would compound earlier losses, especially those that remain unresolved.7,10 This fits well with socioemotional selectivity theory, which proposes that people become increasingly selective with age, preferring positive over negative information and familiar, trusted relationships over novel ones as a way of maximizing positive emotional experiences and minimizing emotional risks,45,46 effectively narrowing an older person’s social world and decreasing investment in activities and social relationships.47 4.1. Limitations This study has a number of limitations that inhibit our ability to generalize findings to all aged care facilities and their residents. Although our study took place in 3 facilities in different locations, it involved only a small number of residents, and only individuals with mild dementia. The study methods were highly focused, and we cannot comment on the situation of residents with no dementia or more severe forms of dementia, or on the role of residents’ gender, personality, family relationships, cultural background, or religious affiliation, or on other factors concerning members of staff, management practices, and type of facility.
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Notwithstanding these limitations, our findings point to a need for policies regarding residents’ deaths that respect the needs and wishes of coresidents and address issues concerning information sharing, removal of deceased persons, and remembering the lives of the deceased. These policies should be reflected in staff training, given staff members’ reluctance to engage in meaningful discussion with residents on the subject of coresidents’ deaths for fear of causing distress. This fear was not substantiated in our sample. The majority of residents stated that they did not worry about dying; that they perceived other’s deaths as natural and sometimes welcome and that open communication with staff members was preferable to whispered conversations. New policies could include a more formalized process of communication between residents and staff about how they would like to respond to the death of their fellow residents. One example could be a regular celebration of the lives of those who have died, for example, once a month, so that those with mild dementia are more likely to remember those who have died recently. This would also avoid the concern, expressed by some staff members, that they would be seen to favor some residents over others if only a few were celebrated. Acknowledgments This study was funded by the Australian Commonwealth Government Department of Health and Ageing. References 1. Australian Institute of Health and Wellbeing. Residential aged care in Australia 2008e9. Canberra: Australian Commonwealth Government; 2010. 2. Palliative Care Australia. Quality palliative care for all Australians. Canberra: Palliative Care Australia; 2005. 3. Australian Government Department of Health and Ageing. National Palliative Care Strategy: A framework for palliative care service development. Canberra: Department of Health and Ageing; 2011. 4. Australian Government Department of Health and Ageing. Guidelines for a palliative approach in residential aged care. Canberra: Department of Health and Ageing; 2006. 5. Coughlan R, Ward L. Experiences of recently relocated residents of a long-term care facility in Ontario: assessing quality qualitatively. Int J Nurs Stud. 2007;44: 47e57. 6. Taunton RL, Coffland V, Pedram S, et al. Nursing home residents tell their story. Nurs Homes Magazine; 2006;September::66e70. 7. Doka K. Disenfranchised grief. Bereavement Care. 1999;18:37e39. 8. Moss M, Moss S. The impact of family deaths on older people. Bereave Care. 1996;15:26e27. 9. Doka K. Disenfranchised grief: recognizing hidden sorrow. Lexington, MA: Lexington Books; 1989. 10. O’Connor D, Brodaty H, Chui E, et al. Psychiatry of old age. In: Bloch S, Singh B, eds. Foundations of clinical psychiatry. Melbourne: Melbourne University Press; 2007:457e481. 11. Davison TE, McCabe MP, Mellor D, et al. The prevalence and recognition of major depression among low-level aged care residents with and without cognitive impairment. Aging Ment Health. 2007;11:82e88. 12. Choi NG, Ransom S, Wyllie RJ. Depression in older nursing home residents: the influence of nursing home environmental stressors, coping, and acceptance of group and individual therapy. Aging Ment Health. 2008;12:536e547. 13. Snowdon J, Fleming R. Recognising depression in residential facilities: an Australian challenge. Int J Geriatr Psychiatry. 2008;23:295e300. 14. Howe EG. Sliding ‘Off’ the Sliding Scale: Allowing hope, determining capacity, and providing meaning when an illness is becoming worse but a treatment may help. The Journal of Clinical Ethics 2010;21:91-100. 15. Snyder L. The lived experience of Alzheimer’s: understanding the feelings and subjective accounts of persons with the disease. Alz Care Q. 2001;2:8e22.
16. Clare L. Awareness in people with severe dementia: review and integration. Aging Ment Health. 2010;14:20e32. 17. Grief CJ, Myran DD. Bereavement in cognitively impaired older adults: case series and clinical considerations. J Geriatric Psychiatry Neurol. 2006;19:209e 215. 18. Miller LM, Trzinski AL. Counseling older adults with dementia who are dealing with death: innovative interventions for practitioners. Death Studies. 2006;30: 777e787. 19. Doka K. Grief and dementia. In: Doka KJ, ed. Living with grief: Alzheimer’s disease. Washington, DC: Hospice Foundation of America; 2004. Available at www.hospicefoundation.org/uploads/doka5.pdf. 20. Bergland A, Kirkevold M. The significance of peer relationships to thriving in nursing homes. J Clin Nurs. 2008;17:1295e1302. 21. Anderson KA, Gaugler JE. The grief experiences of certified nursing assistants: personal growth and complicated grief. Omega. 2006;54:301e318. 22. Lange M, Thom B, Kline NE. Assessing nurses’ attitudes toward death and caring for dying patients in a comprehensive cancer centre. Oncol Nurs Forum. 2008;35:955e959. 23. Dunn KS, Otten C, Stephens E. Nursing experience and the care of dying patients. Oncol Nurs Forum. 2005;32:97e104. 24. Halliday LE, Boughton MA. The moderating effect of death experience on death anxiety. J Hospice Palliative Nurs. 2008;10:76e82. 25. Zimmerman S, Slaone P, Williams C, et al. Dementia care and quality of life in assisted care and nursing homes. Gerontol. 2005;45(supp 1):133e146. 26. Norbergh K, Helin Y, Dahl A, et al. Nurses’ attitudes towards people with dementia: the semantic differential technique. Nurs Ethics. 2006;13:264e274. 27. Ross CA, Golder EM. Stigma, negative attitudes and discrimination towards mental illness within the nursing profession: a review of the literature. J Psychiatr Ment Health Nurs. 2009;16:558e567. 28. Tuckett AG. Registered nurses’ understanding of truth-telling as practiced in the nursing-home: an Australian perspective. Health Sociol Rev. 2006;15:179e 191. 29. Honeybun J, Johnston M, Tookman A. The impact of a death on fellow hospice patients. Brit J Med Psychol. 1992;65:67e72. 30. Payne S, Hillier R, Langley-Evans A, et al. Impact of witnessing death on hospice patients. Soc Sci Med. 1996;43:1785e1794. 31. Lavigne-Pley C, Levesque L. Reactions of the institutionalized elderly upon learning of the death of a peer. Death Stud. 1992;16:451e461. 32. Buswell C. The right to grieve. Elderly Care. 1998;10:20e21. 33. Jorm A, MacKinnon A. Psychogeriatric assessment scales user’s guide. 3rd ed. Canberra: Anutech; 1997. 34. Hatfield CF, Dudas RB, Dening T. Diagnostic tools for dementia. Maturitas. 2009;63:181e185. 35. Folstein MF, Folstein SE, McHugh PR. Mini-Mental State Examination: a practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975;12:189e198. 36. Vertesi A, Lever JA, Molloy DW, et al. Standardized mini-mental state examination: use and interpretation. Can Fam Physician. 2001;47:2018e2023. 37. Ezzy E. Qualitative analysis: practice and innovation. Sydney: Allen & Unwin; 2002. 38. Komaromy C. The sight and sound of death: the management of dead bodies in residential and nursing homes for older people. Mortality. 2000;5:299e315. 39. Dunn KS, Otten C, Stephens E. Nursing experience and the care of dying patients. Oncol Nurs Forum. 2005;32:97e104. 40. Beshai J. Are cross-cultural comparisons of norms and death anxiety valid? Omega. 2008;57:299e313. 41. Roff L, Simon C, Klemmack D, et al. Levels of death anxiety: a comparison of American and Lithuanian health and social service personnel. Death Studies. 2006;30:665e675. 42. Wadensten B, Conden E, Wahlund L, et al. How nursing home staff deal with residents who talk about death. Int J Older People Nurs. 2007;2:241e249. 43. Tagariellos P, Girardi P, Amore M. Depression and apathy in dementia: same syndrome or different constructs? A critical review. Arch Gerontol Geriatr. 2009;49:246e249. 44. Yeager C, Hyer L. Apathy in dementia: relations with depression, functional competence and quality of life. Psychol Rep. 2008;102:718e722. 45. Carstensen LL, Isaacowitz DM, Charles ST. Taking time seriously: a theory of socio-emotional selectivity. Am Psychol. 1999;54:165e181. 46. Carstensen LL, Mayr U, Paspupathi M, et al. Emotional experience in everyday life across the adult life span. J Pers Soc Psychol. 2000;79:644e655. 47. Adams KB. Depressive symptoms, depletion, or developmental change? Withdrawal, apathy and lack of vigor in the Geriatric Depression Scale. Gerontology. 2001;41:768e777.
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Geriatric Nursing journal homepage: www.gnjournal.com
Feature Article
Responding to the death of a resident in aged care facilities: Perspectives of staff and residents Heather M. Tan a, *, Margaret M. O’Connor b, Teresa Howard a, Barbara Workman c, d, e, Daniel W. O’Connor f a
Palliative Care Research Unit, School of Nursing and Midwifery, Monash University, P.O. Box 527, Frankston, Victoria 3199, Australia Palliative Care Nursing, Monash University, Australia c Geriatric Medicine, Monash Medical Centre, Monash University, Australia d Rehabilitation and Aged Services at Southern Health, Melbourne, Australia e Monash Ageing Research Centre (MONARC), Australia f Old Age Psychiatry, School of Psychology and Psychiatry, Monash University, Australia b
a r t i c l e i n f o
a b s t r a c t
Article history: Received 2 March 2012 Received in revised form 1 August 2012 Accepted 6 August 2012 Available online 12 September 2012
A qualitative study using individual semistructured interviews was undertaken to explore the perceptions and experiences of 23 aged care residents with mild dementia concerning the deaths of coresidents. The views of 25 facility staff members were also explored. The study was based in 3 aged residential facilities in Victoria, Australia. Interview data indicated that residents and staff had differing views. Residents reported that the impact of the death of a coresident was much less than staff members thought. Residents generally wanted to be told about the death of someone they knew and considered attempts to hide the death and the removal of the body both unnecessary and disrespectful. Both groups agreed that the celebration of the life of a resident was important, although they differed in their preferences for the way this is done. These findings have implications for staff education and practice. Ó 2013 Mosby, Inc. All rights reserved.
Keywords: Aged care Mild dementia Resident deaths Resident views Staff views
1. Background It is anticipated, in Australia and in other Western countries, that the number of people living and dying in residential aged care facilities will increase in coming decades. Currently more than 162,000 Australians live permanently in aged care facilities that range in terms of level of support from independent living units to hostel accommodation (low-level care) and nursing homes (highlevel care). Most residents of low- and high-care facilities have dementia, often in combination with multiple medical comorbidities, and most will die within their facility.1 Facility residents have been specifically identified by the Australian government as requiring access to palliative care, including bereavement support for residents, family, and staff.2e4 The prevalence of grief among residents of aged care homes has been well documented, especially as it relates to loss of independence, of one’s own home, and of a sense of personhood and selfvalue.5-7 The bereavement experience for the older person occurs within the context of multiple and sequential losses,7 some of
* Corresponding author. Tel.: +61 3 9261 2067; fax: +61 3 9261 2086. E-mail address: [email protected] (H.M. Tan). 0197-4572/$ e see front matter Ó 2013 Mosby, Inc. All rights reserved. http://dx.doi.org/10.1016/j.gerinurse.2012.08.001
which may never have been acknowledged or resolved.8 Doka’s seminal work9 drew attention to the issues of disenfranchised grief in a particular relationship, or the loss itself, not being recognized or understood in particular settings. Depressive symptoms have been widely reported among residents of aged care facilities, issues of loss and grief cited as key triggers.10e13 Helping residents to adjust to these losses is complicated in many cases by the presence of dementia. Despite a reduced capacity for verbal expression, conscious recollection, and comprehension, people with any level of cognitive impairment, including mild dementia, can and do experience emotions such as loss and grief.14,15 Aspects of complex awareness may be retained into the later stages of dementia, and sensory and perceptual awareness can be detected even in people with end-stage disease,16 and thus it cannot be assumed that these people are unaware of what is happening to them. Cognitive impairment can, however, interfere with usual ways of understanding and coping with loss and grief.17,18 The experience of grief can be complicated by individuals’ inability to retain the information that someone close to them has died and by the failure of others to recognize and acknowledge their grief.19 Relationships with paid caregivers in aged care facilities are identified by residents as important in providing quality of care.7
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Also, caregivers’ role as facilitators is essential in the development of positive and meaningful peer interactions, contributing to an experience of thriving for nursing home residents.20 In view of the relationships developed between staff members and residents, the death of a resident will have an impact on both residents and staff. Both staff members’ and residents’ responses to the death of a resident may be influenced by factors such as levels of death anxiety and fear of death,21 as well as personal experience of death.22e24 It has been shown, for instance, that nurses with lower levels of disenfranchised grief had less fear of death and that fear of death and levels of death anxiety decreased with more experience of death, providing the grief associated with these deaths was acknowledged.21,24 Staff members’ attitudes toward the elderly and individuals with dementia25e27 may also have an impact on their response to a resident’s death. It has been demonstrated that nurses with a more positive attitude toward people with dementia are more likely to practice person-centered care.26 A positive attitude toward those with dementia or other mental illnesses was also found to be associated with increased levels of education about these diseases.25,27 In Australia, the trend to support older people in their own homes for as long as is practicable means that those admitted to residential care are now older, frailer, and more cognitively impaired than previously. Although these people are vulnerable, protectionism, however well intended, seems unwarranted, and it has been argued28 that the practice of withholding information contrasts with findings suggesting that full disclosure is beneficial to patients and relatives.29,30 Some evidence indicates that not only do residents want to be told about a death, but they would prefer to know in advance when possible so that they can say goodbye.31,32 Our study sought to address the issue of staff members’ approaches to death in Australian aged care facilities as part of a national program to expand access to palliative care to people living in rural areas and in aged residential facilities. To stimulate debate and to trigger questions about current care practices, we chose to focus on people with dementia, who now make up the majority of aged care residents. Ideally, studies should concern the full spectrum of dementia, but the research process entails gathering information from residents themselves, and only those with milder forms of dementia can give informed consent to this undertaking and take part in extended, reflective conversations.
dementia. They included a low-care facility (residents need some help with personal care) operated by a government provider in the outer metropolitan area of a large city (100 beds), a low-care facility operated by a government provider in a small regional town (20 beds), and a facility offering both high-care (residents need 24-hour nursing care) and low-care beds, operated by a not-for-profit organization in a rural area (total 51 beds, 40 of which are highcare beds). Each facility was staffed according to the Australian requirements for accreditation of aged care facilities, the staffresident ratio being higher as required in the facility offering high care. These facilities were selected to increase possible sample numbers and to explore the possibility of differences in the experience of staff and residents in different care settings. This study focused on residents with mild dementia who were able to participate in extended reflective conversations. Residents with a diagnosis of dementia who were regularly assessed using the Psychogeriatric Assessment Scale (PAS), a validated screening tool that taps new learning, language, general knowledge, visuospatial orientation and praxis,33 were considered. Scores range from 0 to 21 with 80% of dementia cases scoring 5 or more points (higher scores denote greater impairment). Residents who scored between 4 and 9 points (the range listed in the Australian government’s residential funding instrument as denoting “mild dementia”) were then rated by nursing staff using the memory, orientation, problem-solving, and personal care sections of the Clinical Dementia Rating (CDR).34 Sections concerning home and hobbies and community affairs are not applicable in a residential setting and were therefore omitted. Residents rated as mildly impaired using the standard CDR algorithm were then introduced by staff to the first author, who, having confirmed their ability to understand who she was, invited them to participate in the study. If they agreed, their family was informed of their decision. Finally, the Mini-Mental State Examination (MMSE)35,36 was administered to participants for the purpose of comparison with other studies. Following staff information sessions conducted by a researcher during staff meeting time, explanatory sheets were distributed and a project champion appointed at each facility. Some staff members indicated their interest in participating directly to the researcher at these meetings, whereas others later arranged an interview time through their local project champion, a staff member who had agreed to be the local contact person for the project.
2. Methods 2.2. Data collection and analysis Doka’s model of disenfranchised grief9 was the framework used to for structure the project. Doka suggests that disenfranchised grief occurs when the grief is not recognized or validated by the social environment of the grieving person. From this and other literature, issues about death and grieving seem to be generally avoided in residential aged care settings, especially in relation to staff perceptions that people with dementia do not experience grief. Although the project focused specifically of the experience of residents with dementia, those with moderate to severe dementia could not be included because of concern about their capacity to give informed consent and their ability to take part in an extended conversation. Following approval by the human research ethics committees of Monash University and the participating aged care provider organizations, this study used a qualitative design with individual semistructured interviews. 2.1. Setting and sampling Staff and residents were recruited from 3 facilities operated by different care providers, all of which cared for residents with mild
Of the 31 residents identified using the above procedures, 23 (74%) agreed to participate and signed consent forms, which included permission to audio-record the interviews. Semistructured interviews, ranging in length from 20 to 45 minutes were conducted in a private location chosen by the resident. Interviews were transcribed verbatim. A second round of interviews seeking more detailed information about key themes was subsequently conducted. A purposive sampling process was used to invite residents who had participated in the first round whose interview data indicated the possibility of exploring some areas of the study in greater depth. Eleven of the 14 approached (79%) agreed to a second interview, and signed their consent to be interviewed and audio-recorded. These interviews ranged in length from 30 to 45 minutes. Twenty-five staff members (42% of approximately 60 eligible) from participating facilities agreed to participate in semistructured interviews and signed their consent, which included permission to audio-record and transcribe interviews verbatim. The prompt interview questions are shown in Fig. 1. Staff interviews ranged in length from 30 to 60 minutes. All interviews were conducted by the first author who has considerable experience in this process.
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Fig. 1. Interview questions.
All interview transcripts were checked against the original recording for accuracy and then thematically analyzed with assistance of NVivo8 software. A coding structure was developed in analyzing the first 3 interviews in each set and continued and expanded as new themes emerged in subsequent interviews using the method of constant comparative analysis.37 This process of data analysis, which occurred concurrently with data collection, was reviewed and refined by the chief investigators as analysis progressed, ensuring qualitative rigor.37 Data saturation was reached for both staff and resident groups. Quotes from the transcripts that illustrated the identified themes were selected and are reported in the Results. 3. Results The majority of the 23 residents were female (56.5%). Fortyeight percent were aged between 80 and 90, 4 were over 90 and 2 (8.7%) under age 65. Their MMSE scores ranged from 15 to 27 with a mean of 22 points (SD ¼ 4.15). Most (74%) had lived at their facility for between 1 and 3 years. Of the 25 staff members, all but 3 were female. Six were registered nurses (university trained), 10 were
enrolled nurses (vocationally trained), 4 were personal care assistants, and 5 had other occupations (facility manager, 1; music therapist, 1; diversional therapist, 2; chaplain, 1). Four themes relating to the focus of this article were identified in the staff interviews and the first round of resident interviews. They were further investigated in the second round of resident interviews primarily because there were considerable differences in experience and perception between staff members and residents. These themes, discussed subsequently, not only have significance for how the death of resident is handled in residential aged care facilities, but were also apparently of considerable interest in both groups of participants. Resident responses are taken from both rounds of interviews. 3.1. The severity of the impact of a death on other residents Predominantly the view of staff (65%) was that residents feared death and found the death of another resident very confronting, reminding them sharply of their own mortality. Death is the next stage for everyonedthey all know that pretty well, so it stares them in the face. So there’s that not wanting to
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acknowledge it, but having to acknowledge it. The death of another resident is very confronting for them.
dies, although when it was someone they did not know, hearing through the grapevine did not cause much concern.
On the other hand, approximately 70% of residents said they did not worry about dying, that it was natural and inevitable because they were old. Some even expressed the view that they would welcome death soon, having lived a long life.
They definitely should tell you personally if you know them. It is disrespectful not to tell us.
Oh no, it doesn’t bother me being surrounded by the elderly and dying. I know I’m getting old. I mean that’s how it is, isn’t it? Aside from fear of death, already reported, staff indicated that the main impact of the death of a resident on other residents was at mealtimes (they always sit in the same groups) and in the small group activities. The biggest impact [of death of known resident] is at the dining room, where they sit. Not so much if they’re next door to that person, it’s funny, isn’t it, it’s mostly at meals. Only about one-quarter of residents acknowledged missing a friend when they died, but most of those also acknowledged that they knew the person was ready to go and were glad that he or she did not suffer anymore. I found that very hard to accept, and I do miss her but I really realized that she was ready to go. Other residents felt that they did not know people beyond acquaintance level, and so their death had little impact. Well it’s like ships that pass in the night you know, you don’t know them very welldyou know what I mean? 3.2. Telling residents about a death Overwhelmingly staff members were of the view that residents were only told about the death of another resident if they were either considered to have a relationship with that person or they asked where they were. This news was usually conveyed in a oneto-one conversation, although giving an answer was often avoided if the staff member considered that the resident asking would not be able deal with the death. Residents are told only if they ask. Yeah, we don’t sort of make it public. Sometimes we fluff over it if we think they can’t handle it. We always tell them if it was someone they were close to. We sort of have the view that they’re all here and most of them will only leave here once they’ve died, that you’re reminding them that when someone does die that maybe their turn is not too far away. Staff acknowledged the power of the “grapevine” in these facilities.
Oh I think it’s quite a good idea if they tell us in the dining room because it’s awful when people whisper to each other, and you know people are wondering what they’re whispering about and all that. Then it’s proper news and not just gossip. Any ambivalence about being told was related to not knowing people and therefore not being especially interested. I don’t see much point in them telling me when I don’t know the person, although if someone mentions it to me, it’s no drama. 3.3. The removal of the body About half the staff members indicated that bodies were removed discreetly and that this often involved escorting residents to their rooms first or shutting the doors of their rooms. The other half were unaware of the process in their facility. We make it discreet. We close all the doors whichever corridor that is in and then we take the ressies into another room where they can’t see what is going on. Almost all staff members were of the view that it would be upsetting for residents to see the body of another resident being removed. I couldn’t imagine anything worse than seeing a body go out the door. Of course there’d be nothing more upsetting to them than seeing that. Forty percent of residents indicated that they were aware that bodies were being removed “on the quiet,” and the rest indicated that they had not seen it and did not know how it was done in their facility. Sometimes they say they are shutting the door for a while and you know they are taking a body out even though they don’t say. It’s a bit silly really. Mainly it alerts people to what is going on, who probably wouldn’t have noticed. Almost half were quite sure that it would not bother them if they did see a body being removed and were almost unanimous in their view that residents would be a lot less upset about seeing a body removed than staff indicated. No [laughing], It wouldn’t bother me if saw a body removed. I’ve seen a lot worse than a body in a bag. I’ve already told my son that when I go I want a purple onednot that common green type!
The gossip line here works extremely well and so often I [staff member] will find out [about] the death of a client from a resident because I’m only here 2 days a week.
They also indicated that giving residents the option of having their door closed or going to their room may well be appropriate, but there is no need to go to extreme measures to avoid someone seeing it.
The majority of residents considered that they heard about the death of another resident most often through the grapevine, although some acknowledged that they were told individually, if they knew the person or if they asked about them.
If staff were concerned that someone who happened to be in the corridor would be upset, they could give them the choice of going to go to their room but many of them will realize what is going on anyway.
Residents don’t get told about a death usually. I found out about someone on my table from another resident who asked a nurse. Sometimes they come and tell us on the quiet if it is someone we know. About one-third indicated that they were unaware of any deaths in their facility. The general consensus among residents was that people do want to be tolddpreferably personally, when someone they know
3.4. Remembering and celebrating the deceased Staff generally recognized the importance of support for themselves in working in an environment where those for whom they cared inevitably died. Eighty percent found that talking with other staff members about a resident and his or her death gave them
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sufficient support. Approximately 40% found that attending a resident’s funeral was an important part of their grieving process. We generally . . . we talk amongst ourselves and each staff; we seem to know how much a resident meant to that staff member. Does that make sense? We all support each other and we go to the funeralsdif we’re allowed to the funerals, we go to the funerals. However, the view that residents would need or want to celebrate the death of another resident was not common. In some facilities, residents were occasionally assisted in attending a funeral. Occasionally a well-known resident’s life was honored by a special morning tea at which people felt free to talk about that person and his or her life. One incidence was reported of a guard of honor being formed to farewell the person as the body left the facility. About half the residents interviewed would like to have had the option of attending the funeral of someone they knew but acknowledged the difficulties of transport and mobility for many residents. I’d like to go to the funeral if I knew the person quite well, but it is not really an option for most of us. There was less interest in memorial services and memorial corners or books. I’m not too fussed about memorial services. I don’t go to that sort of thing. A memorial corner could be nice, but probably not a lot of people would use it. The idea of having a special morning or afternoon tea to chat about and remember a resident who had died was most favored. Most were open to other options such as a special plant or plaque in the garden, if that was what the deceased or their family wanted. It’s a good idea to have an afternoon tea where people can come and chat about the one who died. We sort of do that anyway at the dining table at meals.
4. Discussion Of particular significance in this study was the difference in the views of staff and residents. Generally there is a scarcity of studies specifically addressing these issues, although the apparent contradiction in staff concealing the sight but not the sounds of removing the body from the facility has been investigated.38 It was postulated that this was a professional strategy which enabled staff to manage the boundary between life and death. Different levels of death anxiety may be a possible explanation of the differing views of staff and residents on the impact of the death of a coresident and about the way in which a body is best removed. A variety of views are reported in the literature. Some investigators found that staff members who deal with death constantly show a reduced level of death anxiety,22,39 whereas others found that exposure to death had no impact on levels of death anxiety.40 It was suggested that death anxiety may be both age and gender related, with those exhibiting the highest levels being middle-aged women who significantly make up most of the staff of aged care homes.24 There is also evidence of cultural influences on levels of death anxiety, or at least on a willingness to discuss death before the event.40,41 As a very large number of cultures are represented in the Australian population, this is an increasingly relevant consideration. Higher levels of death anxiety
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may explain reported reluctance of some staff members to talk to residents about death42 and to avoid exposing residents to the death of another or to the removal of the body. Another reason for differences in the views of staff members and residents might be that residents had not been told about the deaths or had not retained this information. In one case, for example, a resident stated that there had been no deaths while she had lived at the home when in fact 2 people had died recently. It was not clear if news of the deaths had been withheld from her, perhaps because she had not been close to the people concerned, or if she had forgotten the news. Although the apathy and social withdrawal that are commonly associated with dementia43,44 might also have contributed to the apparent lack of impact of coresidents’ deaths, our data confirm that residents were often not told of deaths and therefore could not have responded to them. There are implications for organizational policy relating to how the death of a resident is addressed, how the body is removed, informing other residents, and how the life of the deceased is remembered. The range of individual resident needs, the influence of cultural backgrounds of both resident and staff populations, and the impact of age difference between staff and residents, are all likely to have an important influence on the development of such policies. Residents spoke of not knowing most of the other residents well and confirmed that their closest contacts were those with whom they shared a table at mealtime or those belonging to the same activity group. This sense of isolation of residents, while being surrounded by many people, was confirmed by the staff members, who considered the predominance of single bedrooms the main reason for this. Single bedrooms are now the norm in newer Australian aged care homes as part of a move away from the previous impersonal institutions. There is a risk, however, that residents will form fewer positive relationships with their peers and therefore experience less distress when coresidents leave. Although this spares them some distress, a reduction in the number and intensity of relationships between residents might further limit their quality of life in their months or years of residence in a home, an issue that may benefit from further investigation. The seeming overinsistence of a few residents that they did not have or need any friends in the home might represent an unconscious attempt at self-protection. It is possible that elderly people who have already experienced many losses in their lives, although not afraid of death, perhaps do fear additional experiences of loss resulting from the death of a friend in the facility, which would compound earlier losses, especially those that remain unresolved.7,10 This fits well with socioemotional selectivity theory, which proposes that people become increasingly selective with age, preferring positive over negative information and familiar, trusted relationships over novel ones as a way of maximizing positive emotional experiences and minimizing emotional risks,45,46 effectively narrowing an older person’s social world and decreasing investment in activities and social relationships.47 4.1. Limitations This study has a number of limitations that inhibit our ability to generalize findings to all aged care facilities and their residents. Although our study took place in 3 facilities in different locations, it involved only a small number of residents, and only individuals with mild dementia. The study methods were highly focused, and we cannot comment on the situation of residents with no dementia or more severe forms of dementia, or on the role of residents’ gender, personality, family relationships, cultural background, or religious affiliation, or on other factors concerning members of staff, management practices, and type of facility.
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Notwithstanding these limitations, our findings point to a need for policies regarding residents’ deaths that respect the needs and wishes of coresidents and address issues concerning information sharing, removal of deceased persons, and remembering the lives of the deceased. These policies should be reflected in staff training, given staff members’ reluctance to engage in meaningful discussion with residents on the subject of coresidents’ deaths for fear of causing distress. This fear was not substantiated in our sample. The majority of residents stated that they did not worry about dying; that they perceived other’s deaths as natural and sometimes welcome and that open communication with staff members was preferable to whispered conversations. New policies could include a more formalized process of communication between residents and staff about how they would like to respond to the death of their fellow residents. One example could be a regular celebration of the lives of those who have died, for example, once a month, so that those with mild dementia are more likely to remember those who have died recently. This would also avoid the concern, expressed by some staff members, that they would be seen to favor some residents over others if only a few were celebrated. Acknowledgments This study was funded by the Australian Commonwealth Government Department of Health and Ageing. References 1. Australian Institute of Health and Wellbeing. Residential aged care in Australia 2008e9. Canberra: Australian Commonwealth Government; 2010. 2. Palliative Care Australia. Quality palliative care for all Australians. Canberra: Palliative Care Australia; 2005. 3. Australian Government Department of Health and Ageing. National Palliative Care Strategy: A framework for palliative care service development. Canberra: Department of Health and Ageing; 2011. 4. Australian Government Department of Health and Ageing. Guidelines for a palliative approach in residential aged care. Canberra: Department of Health and Ageing; 2006. 5. Coughlan R, Ward L. Experiences of recently relocated residents of a long-term care facility in Ontario: assessing quality qualitatively. Int J Nurs Stud. 2007;44: 47e57. 6. Taunton RL, Coffland V, Pedram S, et al. Nursing home residents tell their story. Nurs Homes Magazine; 2006;September::66e70. 7. Doka K. Disenfranchised grief. Bereavement Care. 1999;18:37e39. 8. Moss M, Moss S. The impact of family deaths on older people. Bereave Care. 1996;15:26e27. 9. Doka K. Disenfranchised grief: recognizing hidden sorrow. Lexington, MA: Lexington Books; 1989. 10. O’Connor D, Brodaty H, Chui E, et al. Psychiatry of old age. In: Bloch S, Singh B, eds. Foundations of clinical psychiatry. Melbourne: Melbourne University Press; 2007:457e481. 11. Davison TE, McCabe MP, Mellor D, et al. The prevalence and recognition of major depression among low-level aged care residents with and without cognitive impairment. Aging Ment Health. 2007;11:82e88. 12. Choi NG, Ransom S, Wyllie RJ. Depression in older nursing home residents: the influence of nursing home environmental stressors, coping, and acceptance of group and individual therapy. Aging Ment Health. 2008;12:536e547. 13. Snowdon J, Fleming R. Recognising depression in residential facilities: an Australian challenge. Int J Geriatr Psychiatry. 2008;23:295e300. 14. Howe EG. Sliding ‘Off’ the Sliding Scale: Allowing hope, determining capacity, and providing meaning when an illness is becoming worse but a treatment may help. The Journal of Clinical Ethics 2010;21:91-100. 15. Snyder L. The lived experience of Alzheimer’s: understanding the feelings and subjective accounts of persons with the disease. Alz Care Q. 2001;2:8e22.
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