ORIGINAL ARTICLE
Awareness of impending death for residents of long-term care facilities Beryl Cable-Williams
PhD, RN
Professor, Trent/Fleming School of Nursing, Trent University, Peterborough, Ontario, Canada
Donna Wilson
PhD, RN
Professor, Faculty of Nursing, University of Alberta, Edmonton, Alberta, Canada
Submitted for publication: 23 January 2013 Accepted for publication: 30 August 2013
Correspondence: Beryl Cable-Williams Trent/Fleming School of Nursing Trent University 1600 West Bank Dr Peterborough ON K9J 7B8 Canada Telephone: +705-748-1011 E-mail: [email protected]
CABLE-WILLIAMS B. & WILSON D. (2014) Awareness of impending death for residents of long-term care facilities. International Journal of Older People Nursing 9, 169–179. doi: 10.1111/opn.12045
Aim. To explore awareness of impending death for very old persons in long-term care facilities. Background. The trajectories of decline that are associated with chronic progressive diseases in advanced old age have few prognostic markers. Consequently, it is difficult to determine when to start palliative or end-of-life care. Design. Mixed methods. Methods. Data were collected in three long-term care facilities in Canada. Statistical data were subjected to basic descriptive analysis. Qualitative data were collected using methods commonly associated with ethnography including interviews, focus groups, observations and artefact review. Constant-comparative analysis of qualitative data occurred as data were collected. Results. A 2-stage layered awareness of impending death was identified: first generalised and then clinical awareness. Generalised awareness was characterised by an understanding of human mortality and an understanding of the person’s nearness to the end of an expected lifespan. Care routines and use of resources were not influenced by this early awareness. Clinical awareness of impending death was later acknowledged when health status changes suggested that death was likely within a few hours or days. The care then changed substantially to palliative in nature. Conclusions. Despite an awareness that death occurs naturally at the end of a long life and/or long illness, a serious decline towards death was not noticed or acknowledged until the last few hours or days of life, thus limiting palliative care to late-stage pain and symptom management. Implications for practice. Although this late-stage awareness of impending death is arguably the first necessary step for a change in nursing homes to a palliativeoriented approach to care for people who are nearing death in late life, timely acknowledgement of the potential for death is needed to facilitate improvements in care for residents of long-term facilities. Key words: death awareness, ethnography, long-term care, nursing home care, palliative care
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What does this research add to existing knowledge in gerontology?
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This study offers previously undocumented insights into awareness of impending death among residents, staff and family members in the context of LTC facilities. This study reveals a layered awareness of impending death with its reality being acknowledged within the last few days or hours of life.
What are the implications of this new knowledge for nursing care with older people?
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Palliative care of dying residents of LTC facilities may be reduced to late-stage pain and symptom management when it is initiated within a few days or hours of death. Staff members may need to take the lead in conversing with families who may be unaware of the impending death of a loved one.
How could the findings be used to influence policy or practice or research or education?
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Further research is needed to determine what difference a more timely awareness of impending death would make. Further research is needed to understand why impending death is not acknowledged until very late in the decline towards death, despite the underlying awareness that death is expected in advanced old age. Care must be taken to ensure that the systems on which policy-makers rely for data are used accurately to portray the realities of dying and end-of-life care needs in LTC facilities.
Introduction Persons who are aged 85 years or older constitute a distinct and important group because they belong to the fastest growing population group in most developed countries (World Health Organization, 2010) and because they are highly vulnerable to failing health and the reduced ability to care for themselves independently (Wilson & Truman, 2004). Those who require assistance with activities of daily living and/or need skilled nursing care often become residents of 170
long-term care (LTC) facilities such as nursing homes. Recent trends in LTC populations include older age at admission, shorter duration of stay prior to death there and higher acuity supportive care needs (Wilson & Truman, 2004; Froggatt et al., 2011). Most persons who are admitted to LTC facilities will reside there until they die (Goldberg & Botero, 2008). Thirty five per cent of deaths in LTC facilities in the United Kingdom (Siddell & Komaromy, 2003) and 44% of deaths in American nursing homes (Jones et al., 2009) occurred within 1 year of admission. The oldest old are the most likely to approach the end of life in a LTC facility (Francke & Willems, 2005; Klinkenberg et al., 2005; Fleming et al., 2010; Froggatt et al., 2011). In the United States of America, 58% of all individuals 85 years of age or older are admitted to a LTC facility (Meier & Morrison, 1999) and 38% of all deaths of the oldest old occur in nursing homes (Mezey et al., 1999). Similarly, Shield et al. (2010) reported that 25% of all non-traumatic deaths of older Americans occurred in nursing homes. Death for LTC residents is often an outcome of progressive chronic diseases and/or age-related frailty (Goldberg & Botero, 2008; Mitchell et al., 2009; O’Connor, 2009). The trajectories of decline commonly associated with death in advanced old age have fewer prognostic markers compared with more defined and studied diseases such as cancer (Murtagh et al., 2004). Consequently, it can be difficult to determine when someone living in a nursing home is nearing death (Bern-Klug, 2006; Veerbeek et al., 2008; Waskiewich & Stajduhar, 2012). There may be considerable uncertainty about the appropriate balance of curative, restorative and palliative goals of care for residents of LTC facilities. Attempts to facilitate the prediction of mortality risk among LTC residents have resulted in the development and validation of several measurement tools. Tools such as the Minimal Data Set – changes in Health, End-stage Disease and Signs and Symptoms Scale use data that are currently available from Minimal Data Set assessments carried out routinely in LTC facilities in many countries (Hirdes et al., 2003; Porock et al., 2005; Van Der Steen et al., 2007). There are many advantages of being able to predict mortality in nursing homes, including: (i) more appropriate care planning with residents and their families so as to avoid false hope and the use of futile or unhelpful acute hospital treatment; (ii) remediation of risk factors to prevent falls and other mishaps; (iii) adjusting case mix within and across facilities to facilitate work-force planning; and (iv) to facilitate long-term planning for ageing populations (Flacker & Kiely, 2003). However, a review of the literature for this report revealed no articles on the use or the effect of the utilisation of mortality prediction scales in nursing homes. © 2014 John Wiley & Sons Ltd
Awareness of impending death
Instead, quality of care in LTC facilities has been the subject of considerable concern, even though LTC facilities are highly regulated in most jurisdictions (Forbes-Thompson & Gessert, 2005; Jones et al., 2009; Fleming et al., 2010; Froggatt et al., 2011). Reports have identified deficiencies in pain and symptom management, particularly in the context of dementia, an increasingly common diagnosis among residents of LTC facilities (Kaasalainen et al., 2007). Furthermore, concern has been expressed that an interventionist approach for failing or dying LTC residents can contribute to prolonged suffering (Wilson et al., 2011). Prognostic uncertainty has been cited as a reason for substandard or absent palliative/end-of-life care for residents of LTC facilities (Coventry et al., 2005; Bern-Klug, 2006; Biola et al., 2007). It is widely acknowledged that an awareness of impending death is important for facilitating palliative care and symptom management (Canadian Hospice Palliative Care Association, n.d). There is also considerable agreement in modern societies that the facilitation of a good death requires open communication based on a realistic and shared understanding of the person’s prognosis (Enes & de Vries, 2004; Thompson et al., 2008). Long ago, Glaser and Strauss (1965) highlighted the challenges inherent in providing quality care for the dying when awareness of impending death is lacking or veiled in a pretence. More recently, Twycross (2002) declared ‘it is not possible to provide good palliative care without prior commitment to openness and honesty’ (p. 273). Yet, a thorough literature search revealed no articles that addressed awareness of impending death among residents of LTC facilities. Hence, a two-staged mixed-methods research study was undertaken to address the question: Is there an awareness of impending death for residents, aged 85 and older, of longterm care facilities?
Methods Quantitative and qualitative data were gathered following research ethics approval from the University of Alberta Human Research Ethics Board and administrative approvals from three participating facilities in Ontario, Canada. The three facilities were accessible for the researcher, representative of LTC facilities in the province, and interested in participating in research (Table 1). Data were gathered by the first author over a period of 131 days. Statistical data were gathered through a review of decedent charts and subjected to basic descriptive analysis. Qualitative data were gathered using methods commonly associated with ethnographic research (Roper & Shapira, 2000). © 2014 John Wiley & Sons Ltd
Table 1 Summary of participating facilities and interview participant categories Facility characteristics Facility Number of residents Number of deaths in 12 months study period Type of facility
1 172 49
2 200 66
3 256 67
Private, for profit
Proprietary, not for profit
Municipal, not for profit
Interview participant N characteristics 9 Residents aged 85 years of older (Total) Staff members Registered Nurses 3 (RN) Registered Practical 6 Nurses (RPN) Personal Support 8 Workers (PSW) Nurse Practitioner 1 Nutritionist 1 Activation 1 Administration 3 Directors of Care 3 Pastoral care worker 2 Social worker 1 Total 29 Family members of residents Spouse 9 Adult child 3 Total 12
Interviews A total of 50 semistructured interviews were conducted (Table 1). Recruitment strategies included articles in facility newsletters, attendance at family and resident council meetings, and word-of-mouth snowball methods. All interested staff members were eligible to participate. All resident participants had to be competent to understand the information provided in writing and verbally about the study. Residents who were younger than 85 years of age were not eligible to participate, nor were family members of residents who were younger than 85 years. Any potential participants who were unable to explain in their own words the information that had been provided for establishing informed consent were excluded. Consent was provided in writing or verbally by some residents who spoke their consent in the presence of a witness who was known to and trusted by the resident. In these cases, the witness signed the consent form. All participation was voluntary. 171
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Field notes were kept during all interviews after explaining to the participants that the purpose was to assist the researcher to recall significant phrases or thoughts. Consistent with accepted practices in qualitative research, the number of interviews was determined to be complete when the analysis revealed that no new information or insights were emerging (Corbin & Strauss, 2008). Generally, the initial approach was designed to build trust and interest with minimally sensitive topics and then progressively move towards more sensitive questions (Box 1). Questions and prompts evolved in relation to the unfolding interaction with each individual participant (Box 2). With residents, prompts were provided to encourage them to speak about their awareness of their own mortality or that of other residents with whom they had lived. With family members, the goal was to uncover their understanding of the potential for death for their loved one or others who lived in the facility. Staff members were encouraged to talk about the development of their own awareness that residents would die (Box 3). Terms such as palliative and end-of-life were purposefully avoided to create an opening for each participant to speak about their perceptions about the approach to death without the influence of pre-existing terminology. Interviews lasted from 30 to 90 minutes. Interviews were audio-taped, transcribed and analysed along with data from other sources as described below.
Box 1 Sample of questions from semistructured interview guide for use with family members I would like to start by getting a sense of how you understand your mother’s/father’s life, past, present and future. We can use this time line to identify the significant elements:
Box 2 Examples of probes in the interview process
Interviewer: You said earlier that “This is it” for people who live here – that they will die here. Can you tell me how you know that a resident is dying?
Family member Interview Interviewer: You were telling me that several residents have died here since your husband came here to live. Were you aware that those residents were near the end of their lives? What might have caused you to think that one of those residents would die?
Personal support worker Interview Interviewer: You said that death is a common occurrence in your work here, and you mentioned that you might even say that every resident is dying. Can you tell me when and how you come to think that a resident is dying?
Box 3 Sample of questions from the semistructured interview guide for use with staff members Does anything change for you when a resident is dying? How is care of a dying resident the same or different from one who is not dying? How do residents know that they are dying? How do residents express their awareness of dying? How do family members know that their loved one is dying? How do family members express the awareness of impending death? Are any residents dying at this time here?
Beginning
End
Your mother was born in _______? What were some events in her life that you see as having been very significant? Where should we put them on this time line? What strengths do you feel she has at present?What challenges do you feel she faces now? What challenges do you feel she faces in the future? Where do you feel we are on this time line now? Do you hope to have some advance notice of the likelihood of death?
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How do you know when a resident is going to die soon?
Focus groups One focus group of family members was held. Staff members were not able to commit to focus group meeting times and preferred to discuss findings and questions individually or by email. These communications were printed and analysed as textual data in the same manner as interview transcripts. Review of artefacts A search for artefacts that could provide insight into awareness of impending death in the LTC facilities revealed
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few items. Mission statements, policy and procedure manuals, care plans, computerised charting systems and resident Progress Notes were treated as artefacts as they are commonly used to describe or document the expectations and activities that occur in the LTC facilities. In keeping with provincial regulations requiring that residents’ clinical and functional statuses were to be assessed and recorded, Quarterly Reviews were completed on each resident every 3 months or whenever a significant change was noted. The electronic status assessments that were recorded in two of the three facilities included fields about changes in the level of support required and whether the resident’s status was considered to be terminal. Data from these fields were thus thought to reflect staff awareness of impending death. The third facility was in the process of transition to the new electronic documentation system and had not yet begun to use the change of status field. Progress Notes in each resident’s chart are the primary tool for documentation and communication of daily developments. The Progress Notes of all 182 residents who had died in the previous 12 months were scrutinised for words or phrases that suggested awareness of impending death. Examples are cited in Box 4.
Family member: What can you expect at 92 years? We didn’t think, Oh yeah, Mom is in LTC now so she’ll be dead soon, but I don’t think she’s going to live forever either (son). Resident: I came here because I figured it would be a good place to live. I’ll go out sometime too, but not under my own power. I’m going to die here.
People ought to realize when they come here – this is it (90 year old resident).
Box 6 Examples of residents’ comments related to their perception of the relevance of clinical awareness of impending death
1 I don’t think about it (dying) – I don’t have to. I know they will take good care of me here. I’ve seen it with my wife you know. No, I don’t have to worry about it. 2 I don’t have to think about it – my son will take care of everything. 3 You know, one day they are at the table for breakfast, and then they aren’t, and maybe you will hear (that they died) and maybe you won’t. You know though, you just know.
Box 4 Examples of awareness of impending death from Progress Notes
1 Resident refusing food and fluids – family notified of decline. 2 Dr. called for palliative orders. 3 Butterfly posted on resident’s door (a symbol representing imminent death). 4 Called daughter to discuss possible change of advance directive – currently at level 3 to level 1 (indicating a preference for comfort care within the facility rather than transfer to hospital). 5 Resident rang and said she was dying. I told her that her vital signs were fine so she couldn’t be dying.
Box 5 Examples of data indicating generalised awareness of awareness of impending death from Progress Notes
Staff member: Our people are at the last, right? Because this is the last stage of their life and a lot of them know that (personal support worker).
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You don’t have to be told what is going on. You don’t know when your time will come. Its alright – I have enough to think about today without thinking about tomorrow.
Analysis of qualitative data Data were analysed over time using a constant-comparative approach by the first author. The principle processes used to analyse the data were questioning and making comparisons iteratively within the data from all sources (Boeije, 2002). Boeije recommended that questions should seek to find the core messages, consistencies, inconsistencies and themes within each interview – among interviews from within the same participant group, as well as across different participant groups and among different sources of data. The resulting triangulation contributes to the confirmability of the results. Themes emerged as the data were refined from meaning segments to broad codes and then to more inclusive categories (Corbin & Strauss, 2008). Limitations of this research As data collection was limited to three LTC facilities in a single community in Canada and although their circum173
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stances are expected to be similar to many nursing homes in other jurisdictions, the findings are not representative or generalisable. It is acknowledged that the decision to aggregate the data across the three facilities may have influenced the findings. Similarly, potential differences within categories of interviewees by gender, age or duration of residence or experience were not investigated. It is also acknowledged that individuals who volunteer to participate in research interviews may not be representative of others who do not volunteer. In particular, residents who were not physically or cognitively well enough to participate, and family members who did not live in the locale or were reluctant to talk about dying and death were not included in this research study. Nevertheless, the findings of this research study and their interpretation are offered as a legitimate and significant contribution to understanding the development of awareness of impending death of residents of LTC facilities. Despite efforts to account for the researcher’s subjectivity, the analysis may have been influenced by the lens through which the data were observed and interpreted. To mitigate this limitation, participants were asked in a focus group or email to confirm the accuracy of the interpretation. Furthermore, a sample of interview transcripts was reviewed by the second author and three colleagues. All concurred with the initial coding and development of themes that emerged from the transcripts.
Results The data revealed a two-staged layered awareness of impending death in LTC facilities: first generalised and then clinical awareness. While data relevant to generalised awareness came from residents, staff and family members, data related to clinical awareness came from staff members and to a lesser extent, family members. Progress Notes data also revealed clinical awareness through staff members. Quantitative data from the Quarterly Reviews revealed neither generalised nor clinical awareness of impending death. These findings are presented in detail below. Generalised awareness Generalised awareness of death was characterised by an understanding of human mortality and that one is near the end of one’s lifespan in advanced old age. Family members, staff and residents all demonstrated generalised awareness as demonstrated in the quotations in Box 5. While none of the resident interviewees believed their own death was imminent, some realised that they could be dying at almost any time. One resident mused about the equal possibilities 174
of living another 10 years to reach 100 years of age, or ‘being gone tomorrow’. He concluded that ‘you never know’. All participants clearly acknowledged the potential for dying and death as a reality for human beings, and most particularly for those who are already very old and in advanced ill health. However, it was rare to hear that particular residents were actually dying. Typical responses from staff members to the question, ‘Is anyone here dying?’ were: ‘Not today, but you should have been here a couple of days ago – we lost Mrs. S’; and ‘No, I wouldn’t say so, but T. soon will be palliative at the rate she is going.’ These quotations suggest a second layer of awareness of impending death; one that is more clinical and restrictive. Clinical awareness as portrayed in interview data Clinical awareness of impending death was almost always acknowledged by staff members when they observed changes in a resident’s condition that suggested death was likely within the next few hours or days. Resident comments did not include data that contributed to the theme of clinical awareness of impending death yet every resident interviewee expressed that she/he was not worried about dying as they trusted that appropriate care would be provided when they were dying (Box 6). Many staff members spoke about the importance of close long-term relationships with residents for noticing a mortal turn in their health condition, for instance, one Registered Practical Nurse said: ‘We know the little norms of people. We pick up on all the very small signals [because we have] very close relationships with these people.’ Staff members also recognised that daily contact with residents could sometimes make it more difficult to recognise a gradual health decline. Occasional visitors or staff, who had not seen the resident for some time, were more sensitive to these incremental changes. One Director of Care noted that: ‘I don’t get reports about people unless there’s a significant change – when its gradual maybe you don’t see it until all of a sudden you say, Oh my goodness! … when did that happen?’. There was widespread agreement among the staff participants on the clinical evidence that was predictive of death. Participants spoke about a range of observations from early or potential signs to later and more certain indicators of impending death. Early signs of impending death included: declining participation in social activities; less zest for life, giving up; disinterest in or reduced intake of food and/or fluids; increased time spent in bed/decreased mobility; and speaking or dreaming of predecessors. © 2014 John Wiley & Sons Ltd
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Staff members noted these observations as ominous, but not as certain indicators of immediately impending death. All had witnessed residents who had rallied to life when death had seemed certain as portrayed in the following quotation of a staff member: ‘We see many people cheat death. We think they’re close to that time, but then they bounce back’ (Administrator). This reversal may explain why there was a common reluctance to consider a resident dying if there was any remaining possibility of a rally: ‘You never want to be the person who gives up on somebody’ (RN); and ‘We have some staff getting them up and dressed … right up until they are into Cheyne-Stoking’ (RN). Residents were therefore typically not considered to be dying until their health changes were very advanced and had persisted long enough that death was considered immediately inevitable. This certainty in acknowledging impending death was not possible until a few hours or days prior to the death: ‘The staff on the floor has to recognise when the time is right. We wait until they’re true end-of-life, within hours, and if we’re lucky we get days’ (Director of Care); and ‘When the butterfly goes up, many times I think, they have maybe a day’ (RN). The butterfly symbol was used in all three LTC facilities to alert staff members that a resident was likely to die soon. It was a significant artefact of clinical awareness of impending death. Some care staff members referred to the use of the Palliative Performance Scale (PPS) (Lau et al., 2006), a prognostication tool that is commonly used in palliative care units in hospital settings. They questioned its utility with a population that was already frail and highly dependent as a result of multiple co-morbidities and advanced old age: ‘I would say there is probably 25% of the population that would have a PPS of 30 [a score usually considered to be indicative of a short prognosis] or lower but they may have had that score for numerous years. We would not consider them particularly palliative … until there was a … a sharp decline, because most of these residents are already completely dependent for their activities of daily living’ (RN). Other tools for predicting risk of mortality were not used in any of the participating LTC facilities. Staff members were well aware of the signs that death was near. These were: changes in breathing patterns; decreased level of consciousness; abnormal body temperature; and mottling of the extremities. When these signs were present, staff members acknowledged the imminence of death and the routines of daily care changed for that ‘actively dying’ resident. Family member clinical awareness of impending death tended to be associated with information gained through © 2014 John Wiley & Sons Ltd
discussions with staff members close to the time of death. Staff members expressed a need for family members to be aware of impending death, in part so that they could document whether the resident was to be transferred to hospital. Staff members believed that a palliative conference was also critical to assist the family to make decisions about end-of-life care. This palliative conference was not the only means by which families became aware of impending death. One woman whose father had died while being a resident of a LTC facility and whose mother was now a resident, said: ‘You have to ask. I ask a lot of questions – if you don’t ask, they will probably think you are not ready to hear it.’ The wife of one resident reported that she was learning about the approach of death by watching patterns on the unit where her husband was a resident. She concluded that death is imminent when the resident was no longer brought to the dining room at meal time, and family members were present for more than their usual frequency of visits. Family members seemed to express varying levels of clinical awareness of impending death, depending largely on their previous experience with dying. Some family members noticed the changes and intuited their significance: ‘The staff didn’t tell us – we just sort of got that impression. I think it was about a week before he died that I heard someone mention the word palliative. I figured that meant a few days.’ Other family members relied on staff members to interpret their observations and confirm their meaning: ‘I knew she hadn’t been good - but then I got the call. If I’d known I would have been there at the end. But if you don’t have the experience, how do you really know? They are the experts. I thought they would have told me.’ Although staff members reported that dying and death were commonplace in their work, they were anxious to focus on opportunities for living well in contemporary LTC facilities as a contrast to the grim reputation of nursing homes in years gone by: ‘The generation of people that are coming in now still have that nursing home stigma in their minds from their parents and grandparents. We haven’t got over that yet’ (Administrator). Awareness of impending death as portrayed in resident charts In all three facilities, the Progress Notes section of the residents’ charts was searched for words or phrases that might indicate awareness of impending death. This source of data represents primarily a staff perspective (Box 4). The resident or family perspective was alluded to occasionally in the notes entered by staff members. Generalised awareness of impending death did not appear in residents charts. Data from the Progress Notes were consistent with the interview data from staff members in revealing clinical awareness of 175
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impending death when there was a marked change in a resident’s health status. Progress Notes were commonly written about communications with family members related to the revision of advance directives. Revisions in advance directives were common when there was a change in condition such as increased lethargy, signs of infection or declining intake of food and fluids – often within the last few days prior to death. Changes in the directives were typically towards a less interventionist approach; for example, instead of requiring a transfer to hospital, care was to be within the facility and focused on maximising comfort without disruptive or invasive procedures. These revisions provided the most tangible evidence of clinical awareness of impending death. Documentation about discussions of changes in the condition with family members usually referred to the resident’s ‘decline’ and never included the words ‘dying’ or ‘death’. However, according to the Progress Notes, some residents verbalised their readiness or wish to die to staff members using unequivocal language such as: ‘I want to die. I’m ready to go’ (92-year-old woman, 1 day prior to death), and ‘Let me go – I’m ready’ (88-year-old man, 1 ½ years prior to death).
Typically, palliative status was not noted in the records until within the last week prior to death, and usually only 1 day or two before death. A commonly documented order of events began with the recognition of a change in condition such as increased lethargy and decreased oral intake which resulted in a telephone call or fax to the resident’s physician. The resident was then deemed palliative by the physician. Orders for morphine for pain and an anticholinergic medication to dry secretions almost always accompanied this palliative designation. Notations in the Progress Notes commonly included that ‘palliative measures had been started’. There was no policy or procedure in any of the three facilities that specified the nature of palliative measures or when they should be instituted, nor does provincial legislation in Ontario provide detailed direction about inhouse standards for end-of-life care (Long-Term Care Homes Act, 2007). However, the Progress Notes implied that palliative measures included increased turning, oral care, pain management, addressing the needs of family members and posting the butterfly symbol. Documentation within the Progress Notes emphasised the expectation that death would occur within a few days of being deemed palliative. In one instance, a 98-year-old woman who lived with chronic obstructive lung disease and congestive heart failure had declined in health over a period of 7 years in the LTC facility and then developed pneumonia. 176
The physician’s note 10 days prior to her death indicated that she was ‘almost palliative’. She was designated as palliative on the day of her death. In a second instance, an 89-year-old woman who had fractured her hip returned from hospital where she had developed an antibiotic resistant infection, bloody stools and anaemia. Although she had been declined treatment for her anaemia in hospital ‘due to her overall condition’, the chart indicated that the LTC facility physician and her son agreed that ‘palliative measures should not be started as she is not palliative at this point’. She died 11 days later. Evidence of staff members’ clinical awareness of impending death was not present in the electronic Quarterly Reviews that documented changes in the level of support required by residents in two of the facilities. In 58.2% (n = 38) and 43.5% (n = 30) of cases, no change in the level of support required by residents documented had been documented in the last Quarterly Review prior to death. The need for more support at the last Quarterly Review prior to death was documented in 32.8% (n = 21) and 50.7% (n = 35) of facility records, respectively. It could not be determined from this data source whether an increase in the level of support required was temporary, or part of an irreversible decline towards death within the last 3 months of life. The Quarterly Review also documented whether the resident was considered to be terminally ill. Only 1 of the 182 decedents at the three study sites had been identified as terminally ill in the reports that were forwarded to the government agency responsible for policy decisions, funding and regulation of LTC facilities. Directors of Care were asked to comment on these documentation findings. They attributed the findings to the common practice of copying the previous Quarterly Review and clicking on the appropriate boxes if changes were required. Reviews were also completed by staff members who were not the most familiar with individual residents. It would be easy to leave condition unchanged if the staff member was uncertain about the resident’s current status. The Directors of Care stated that funding was not influenced by the amount of end-of-life care required within the LTC facility, so it was not a priority to document terminal decline for the purpose of reporting to the Ministry of Health and Long-Term Care. In summary, the data revealed a two-stage layered awareness of impending death in LTC facilities. The first generalised awareness was characterised by an understanding of human mortality and nearness to the end of a predictable life span. This generalised awareness was not prognostic, nor did it impact normal care practices. Alternatively, clinical awareness was linked to advanced signs of © 2014 John Wiley & Sons Ltd
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impending death. Clinical awareness of impending death did foretell actual death, usually within a few hours or days, and this stage was accompanied by changes in care priorities and routines.
Discussion As indicated, two stages of awareness of impeding death were identified. In the first, residents, family members and staff members acknowledged a generalised awareness of impending death as death could be expected in advanced old age regardless of the presence of life-threatening illnesses. Residents in this study did not speak of clinical awareness of their own eventual death or the deaths of other residents with whom they had lived. Like many participants in Mathie et al.’s (2012) study, they acknowledged the uncertainty of the future, focused on day to day matters and trusted that they would be well cared for when their time came. Staff and family members identified clinical awareness of impending death when changes in residents’ conditions indicated that death was immediately likely. It is possible then that much of the approach to death occurred without anyone being aware that the death was imminent or ignoring this imminence in a context of mutual pretence (Glaser & Strauss, 1965); a state in which the reality of death in the near future was known, yet unacknowledged until death was only hours or a few days away. If so, dying residents and their families may have missed opportunities for the resolution of relationships or business arrangements, timely palliative pain and symptom management, and end-of-life care planning. These circumstances reflect aspects of the everyday culture of LTC facilities which mediate the quality of dying there. Longterm care facilities are also embedded within a larger social culture that may prefer to consider death to be unnatural, untimely and tragic. This is questionably appropriate for the oldest old in LTC facilities, considering that they have already lived a life that is much longer than most and with dying in advanced old age seen as normal and expected by residents, family members and staff members. However, the question arises whether a decision to acknowledge and accept dying is allowing a natural, and perhaps preferred death, or reflecting ageist judgments about the value of the older person and the desirability of sustaining her/his life. The line between appropriate consideration of the significance of age and ageist discrimination is not clear. For many family and staff members who participated in this research study, uncertainty about the acceptability of death was resolved by considering that no one was dying until death was inevitably near. It should also be noted that although LTC facilities are charged with providing 24 hours 7 days a week care to the © 2014 John Wiley & Sons Ltd
most disabled persons, they do not enjoy a reputation of providing consistent high-quality care. In part, this issue may be related to the heritage of LTC facilities as poor houses, places where indigent persons were left to die with the barest minimum of care (Achenbaum, 1974). This low public perception persists today despite efforts over several decades to improve LTC facility conditions (Rahman & Schnelle, 2008; Rosofsky, 2009). Participation in this research study thus offered an opportunity for staff members to voice a counter discourse from within contemporary LTC facilities. Their challenge of the prevailing negative characterisation of nursing homes is summarised by Timmerman (2010): ‘Longterm care used to be a big dark unfriendly formidable place that those being admitted to referred to as the end. I am happy to shout to one and all that the nursing home is a happening place’ (p. 4). One of the inadvertent consequences of this counter discourse may be to dismiss, more completely than is helpful, the belief that frail or dependent people go to LTC facilities to die. Emphasising living in LTC, and separating living from dying, even for very frail and dependent individuals in advanced old age offers a perspective that may be palatable for a death-avoiding public. However, a single-minded emphasis on living may disenfranchise the frailest of LTC facility residents from the opportunities or resources that others who are acknowledged to be dying can access. In Ontario, the Canadian province where this research was completed, the Quarterly Reviews of residents provide data on which the provincial Ministry of Health and Long-Term Care makes policy and funding decisions. It is significant that there was little meaningful documentation of the economically important features of caring for dying residents; such increased needs for support, let alone the social, psychological and spiritual considerations that are central in palliative care. The palliative/end-of-life needs of residents in LTC facilities can thus remain invisible within the healthcare system, and also within government policy decisions. Consequently, resident care is organised according to regulatory and economic imperatives (Parker, 2011) that reflect a discourse of ‘striving to keep alive’ (Froggatt et al., 2011, pp. 266–267). As such, they may not reflect priorities in the life world of frail residents in advanced old age. Death in advanced old age has been characterised as hidden and unacknowledged, even within the field of palliative care (O’Connor, 2009). O’Connor proposed that a discourse on decrepit dying is therefore necessary to recognise ordinary and expected death in advanced old age. The findings of this research study add to the argument that a discourse of decrepit dying may be a necessary precursor to advancing knowledge, policy and programme developments 177
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that are relevant to the oldest old who live and then die in LTC facilities.
Contributions Study design: BCW, DW; data collection and analysis: BCW, DW and manuscript preparation: BCW.
Conclusions This mixed-methods research study was undertaken to answer the question ‘Is there awareness of impending death of residents in LTC facilities?’. Awareness of impending death was organised in two layers, first generalised and later clinical awareness. Generalised awareness involved the acknowledgement of a limited life expectancy for those who had lived to advanced old age. All three participant groups communicated this level of awareness. Clinical awareness, as only revealed by staff and family member participants, involved the recognition of irreversible bodily changes that would certainly and soon end in death. As awareness of impending death is arguably the first necessary step in installing a palliative approach to care for very old people living in nursing homes, timely acknowledgement of the potential for death could facilitate improvements in the care of residents of long-term facilities. This acknowledgement of impending death is also needed for appropriate policy decisions at the systems level, a matter compromised by the current data that is forwarded from long-term care facilities about the residents ‘living’ there.
Implications for practice Palliative care of dying residents of LTC facilities may be reduced to late-stage pain and symptom management when it is initiated within a few days or hours of death. Further research is needed to determine what difference a more timely awareness of impending death would make. Staff members may need to take the lead in opening the conversation with families who are caught up in a mutual pretense concerning the life and not inevitability of death of a loved-one. Further research is needed to understand why impending death is not acknowledged until very late in the decline toward death, despite the existence of an underlying awareness that death is expected and normal in the context of advanced oldage and progressive dependence. Care must be taken to ensure that the systems on which policy-makers rely for data are used accurately to portray the realities of dying and end-of-life care needs in LTC facilities.
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References Achenbaum W.A. (1974) Old Age in the New Land: The American Experience Since 1790. Johns Hopkins University Press, Baltimore, MA. Bern-Klug M. (2006) Calling the question of “possible dying” among nursing home residents: triggers, barriers, and facilitators. Journal of Social Work in End-of-Life & Palliative Care 2, 61–85. Biola H., Sloane P.D., Williams C.S., Daalemen T.P., Williams S.W. & Zimmerman S. (2007) Physician communication with family caregivers of long-term care residents at the end-of-life. Journal of the American Geriatrics Society 55, 846–856. Boeije H. (2002) A purposeful approach to the constant comparative method in the analysis of qualitative interviews. Quality & Quantity 36, 391–409. Canadian Hospice Palliative Care Association (n.d) What is Palliative Care? Available at: http://www.chpca.net/menu_items/faqa. htm#faq_benefits (accessed 12 December 2013). Corbin J.M. & Strauss A. (2008) The Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory, 3rd edn. Sage, Thousand Oaks, CA. Coventry P.A., Grande G.E., Richards D.A. & Todd C.J. (2005) Prediction of appropriate timing of palliative care for older adults with non-malignant life-threatening disease: a systematic review. Age and Ageing 34, 218–227. Enes S. & de Vries K. (2004) A survey of ethical issues experienced by nurses caring for terminally-ill elderly people. Nursing Ethics 11, 150–164. Flacker J.M. & Kiely D.K. (2003) Mortality-related factors and 1year survival in nursing home residents. Journal of the American Geriatrics Society 51, 213–221. Fleming J., Zhao J., Farquhar M., Brayne C., Barclay S. & The Cambridge City Over-75s Cohort Study Collaboration (2010) Place of death for the ‘oldest old’: >85-year-olds in the CC75C population-based cohort. British Journal of General Practice 60, 171–179. Forbes-Thompson S. & Gessert C.E. (2005) End-of-life in nursing homes: connections between structure, process and outcome. Journal of Palliative Care 8, 545–555. Francke A.L. & Willems D.L. (2005) Terminal patients’ awareness of impending death: the impact upon requesting adequate care. Cancer Nursing 28, 241–247. Froggatt K., Hockley J., Parker D. & Brazil K. (2011) A system lifeworld perspective on dying in long term care settings for older people: contested states in contested places. Health & Place 17, 263–268. Glaser B.G. & Strauss A.L. (1965) Awareness of Dying. Aldine, Chicago, IL. Goldberg T.H. & Botero A. (2008) Causes of death in elderly nursing home residents. Journal of the American Medical Directors Association 9, 565–567. Hirdes J.P., Frijters D.H. & Teare G.F. (2003) The MDS-CHESS Scale: a measure to predict mortality in institutionalized older people. Journal of the American Geriatrics Society 51, 96–100.
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Awareness of impending death Jones A.L., Dwyer L.L., Bercovitz A.R. & Strahan G.W. (2009) The National Nursing Homes Survey: 2004 Overview. Vital and Health Statistics. Series 13 167, 1–9. Kaasalainen S., Brazil K., Pleog J. & Martin L.S. (2007) Nurses’ perceptions around providing palliative care for long-term care residents with dementia. Journal of Palliative Care 23, 173–180. Klinkenberg M., Visser G., van Groenou M.J.B., van der Wal G., Deeg D.J.H. & Willems D.L. (2005) The last 3 months of life: care, transitions and the place of death of older people. Health and Social Care in the Community 13, 420–430. Lau F., Downing M., Lesperance M., Shaw J. & Kuziemsk C. (2006) Use of Palliative Performance Scale in end-of-life prognostication. Journal of Palliative Medicine 9, 1066–1077. Long-Term Care Homes Act (2007) Ontario Regulation 79/10, § 42 & 52. Available at: http://www.search.e-laws.gov.on.ca/en/isysquery/35fbcd18-a633-4843-b5a8-f767d030510c/1/doc/?search= browseStatutes&context=#hit1 (accessed 12 December 2013). Mathie E., Goodman C., Crang C., Froggatt K., Illiffe S., Manthorpe J. & Barclay S. (2012) Uncertain future: the unchanging views of care home residents about living and dying. Palliative Medicine 26, 734–743. Meier D.E. & Morrison R.S. (1999) Old age and care near the endof-life. Generations 23, 6–11. Mezey M., Miller L.L. & Linton-Nelson L. (1999) Caring for caregivers of frail elders at the end-of-life. Generations, 23, 44–50. Mitchell S.L., Teno J.M., Kiely M.P.H., Shaffer M.L., Jones R.N., Prigerson H.J., Volicer L., Givens J.L. & Hamel M.B. (2009) The clinical course of advanced dementia. The New England Journal of Medicine 361, 1529–1538. Murtagh F.E.M., Preston M. & Higginson I. (2004) Patterns of care for non-malignant disease. Clinical Medicine 4, 39–44. O’Connor M. (2009) Decrepit death as a discourse of death in older age: implications for policy. International Journal of Older People Nursing 4, 263–271. Parker D. (2011) Residential aged care facilities: places for living and dying. Cultural Studies Review 17, 31–51. Porock D., Oliver D.P., Zweig S., Rantz M., Mehr D., Madsen R. & Petroski G. (2005) 6 month MDS mortality risk index. Journal of Gerontology Series A: Biological Sciences and Medical Sciences 60, 491–498.
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Rahman A. & Schnelle J.F. (2008) The nursing home culture-change movement: recent past, present, and future. The Gerontologist 48, 142–148. Roper J.M. & Shapira J. (2000) Ethnography in Nursing Research. Sage, Thousand Oaks, CA. Rosofsky I. (2009) Nasty, Brutish and Long: Adventures in Old Age and the World of Eldercare. Penguin, New York, NY. Shield R.R., Wetle T., Teno J., Miller S.C. & Welch L.C. (2010) Vigilant at the end of life: family advocacy in the nursing home. Journal of Palliative Medicine 13, 573–579. Siddell M. & Komaromy C. (2003) Who dies in care homes for older people?: In End of Life in Care Homes: A Palliative Approach (Katz J.S. & Peace S. eds). Oxford University Press, Oxford, pp. 443–457. Thompson G.N., Menec V.H., Chochinov H.M. & McClement S.E. (2008) Family satisfaction with care of a dying loved one in nursing homes. Journal of Gerontological Nursing 34, 37–44. Timmerman M. (2010) Places to die: long-term care. Central East Palliative Care Network 1, 2. Twycross R.G. (2002) The challenge of palliative care. International Journal of Clinical Oncology 7, 271–278. Van Der Steen J.T., Mitchell S.L., Frijters D.H., Kruse R.L. & Ribbe M.W. (2007) Prediction of 6 month mortality in nursing homes residents with advanced dementia: validity of a risk score. Journal of the American Medical Directors’ Association 8, 464–468. Veerbeek L., Van Zuylen L., Swart S.J., Jongeneel G., Van der Maas P.J. & Van Der Heide A. (2008) Does recognition of the dying phase have an effect on the use of medical interventions? Journal of Palliative Care 24, 94–99. Waskiewich S. & Stajduhar K.I. (2012) End of life in residential care from the perspective of care aides. Canadian Journal on Aging 31, 411–421. Wilson D.M. & Truman C. (2004) Long-term care residents: concerns identified by population and care trends. Canadian Journal of Public Health 95, 382–386. Wilson D.M., Cohen J., Birch S., MacLeod R., Mohankumar D., Armstrong P., Froggatt K., Francke A., Low G., McCormack B., Hollis V. & Williams A. (2011) “No one dies of old age”: implications for research, practice, and policy. Journal of Palliative Care 27, 148–156. World Health Organization (2010) Ageing and Life Course: Our Ageing World. Available at: http://www.who.int/ageing/en/ (accessed 12 December 2013).
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Awareness of impending death for residents of long-term care facilities Beryl Cable-Williams
PhD, RN
Professor, Trent/Fleming School of Nursing, Trent University, Peterborough, Ontario, Canada
Donna Wilson
PhD, RN
Professor, Faculty of Nursing, University of Alberta, Edmonton, Alberta, Canada
Submitted for publication: 23 January 2013 Accepted for publication: 30 August 2013
Correspondence: Beryl Cable-Williams Trent/Fleming School of Nursing Trent University 1600 West Bank Dr Peterborough ON K9J 7B8 Canada Telephone: +705-748-1011 E-mail: [email protected]
CABLE-WILLIAMS B. & WILSON D. (2014) Awareness of impending death for residents of long-term care facilities. International Journal of Older People Nursing 9, 169–179. doi: 10.1111/opn.12045
Aim. To explore awareness of impending death for very old persons in long-term care facilities. Background. The trajectories of decline that are associated with chronic progressive diseases in advanced old age have few prognostic markers. Consequently, it is difficult to determine when to start palliative or end-of-life care. Design. Mixed methods. Methods. Data were collected in three long-term care facilities in Canada. Statistical data were subjected to basic descriptive analysis. Qualitative data were collected using methods commonly associated with ethnography including interviews, focus groups, observations and artefact review. Constant-comparative analysis of qualitative data occurred as data were collected. Results. A 2-stage layered awareness of impending death was identified: first generalised and then clinical awareness. Generalised awareness was characterised by an understanding of human mortality and an understanding of the person’s nearness to the end of an expected lifespan. Care routines and use of resources were not influenced by this early awareness. Clinical awareness of impending death was later acknowledged when health status changes suggested that death was likely within a few hours or days. The care then changed substantially to palliative in nature. Conclusions. Despite an awareness that death occurs naturally at the end of a long life and/or long illness, a serious decline towards death was not noticed or acknowledged until the last few hours or days of life, thus limiting palliative care to late-stage pain and symptom management. Implications for practice. Although this late-stage awareness of impending death is arguably the first necessary step for a change in nursing homes to a palliativeoriented approach to care for people who are nearing death in late life, timely acknowledgement of the potential for death is needed to facilitate improvements in care for residents of long-term facilities. Key words: death awareness, ethnography, long-term care, nursing home care, palliative care
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What does this research add to existing knowledge in gerontology?
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This study offers previously undocumented insights into awareness of impending death among residents, staff and family members in the context of LTC facilities. This study reveals a layered awareness of impending death with its reality being acknowledged within the last few days or hours of life.
What are the implications of this new knowledge for nursing care with older people?
• •
Palliative care of dying residents of LTC facilities may be reduced to late-stage pain and symptom management when it is initiated within a few days or hours of death. Staff members may need to take the lead in conversing with families who may be unaware of the impending death of a loved one.
How could the findings be used to influence policy or practice or research or education?
• • •
Further research is needed to determine what difference a more timely awareness of impending death would make. Further research is needed to understand why impending death is not acknowledged until very late in the decline towards death, despite the underlying awareness that death is expected in advanced old age. Care must be taken to ensure that the systems on which policy-makers rely for data are used accurately to portray the realities of dying and end-of-life care needs in LTC facilities.
Introduction Persons who are aged 85 years or older constitute a distinct and important group because they belong to the fastest growing population group in most developed countries (World Health Organization, 2010) and because they are highly vulnerable to failing health and the reduced ability to care for themselves independently (Wilson & Truman, 2004). Those who require assistance with activities of daily living and/or need skilled nursing care often become residents of 170
long-term care (LTC) facilities such as nursing homes. Recent trends in LTC populations include older age at admission, shorter duration of stay prior to death there and higher acuity supportive care needs (Wilson & Truman, 2004; Froggatt et al., 2011). Most persons who are admitted to LTC facilities will reside there until they die (Goldberg & Botero, 2008). Thirty five per cent of deaths in LTC facilities in the United Kingdom (Siddell & Komaromy, 2003) and 44% of deaths in American nursing homes (Jones et al., 2009) occurred within 1 year of admission. The oldest old are the most likely to approach the end of life in a LTC facility (Francke & Willems, 2005; Klinkenberg et al., 2005; Fleming et al., 2010; Froggatt et al., 2011). In the United States of America, 58% of all individuals 85 years of age or older are admitted to a LTC facility (Meier & Morrison, 1999) and 38% of all deaths of the oldest old occur in nursing homes (Mezey et al., 1999). Similarly, Shield et al. (2010) reported that 25% of all non-traumatic deaths of older Americans occurred in nursing homes. Death for LTC residents is often an outcome of progressive chronic diseases and/or age-related frailty (Goldberg & Botero, 2008; Mitchell et al., 2009; O’Connor, 2009). The trajectories of decline commonly associated with death in advanced old age have fewer prognostic markers compared with more defined and studied diseases such as cancer (Murtagh et al., 2004). Consequently, it can be difficult to determine when someone living in a nursing home is nearing death (Bern-Klug, 2006; Veerbeek et al., 2008; Waskiewich & Stajduhar, 2012). There may be considerable uncertainty about the appropriate balance of curative, restorative and palliative goals of care for residents of LTC facilities. Attempts to facilitate the prediction of mortality risk among LTC residents have resulted in the development and validation of several measurement tools. Tools such as the Minimal Data Set – changes in Health, End-stage Disease and Signs and Symptoms Scale use data that are currently available from Minimal Data Set assessments carried out routinely in LTC facilities in many countries (Hirdes et al., 2003; Porock et al., 2005; Van Der Steen et al., 2007). There are many advantages of being able to predict mortality in nursing homes, including: (i) more appropriate care planning with residents and their families so as to avoid false hope and the use of futile or unhelpful acute hospital treatment; (ii) remediation of risk factors to prevent falls and other mishaps; (iii) adjusting case mix within and across facilities to facilitate work-force planning; and (iv) to facilitate long-term planning for ageing populations (Flacker & Kiely, 2003). However, a review of the literature for this report revealed no articles on the use or the effect of the utilisation of mortality prediction scales in nursing homes. © 2014 John Wiley & Sons Ltd
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Instead, quality of care in LTC facilities has been the subject of considerable concern, even though LTC facilities are highly regulated in most jurisdictions (Forbes-Thompson & Gessert, 2005; Jones et al., 2009; Fleming et al., 2010; Froggatt et al., 2011). Reports have identified deficiencies in pain and symptom management, particularly in the context of dementia, an increasingly common diagnosis among residents of LTC facilities (Kaasalainen et al., 2007). Furthermore, concern has been expressed that an interventionist approach for failing or dying LTC residents can contribute to prolonged suffering (Wilson et al., 2011). Prognostic uncertainty has been cited as a reason for substandard or absent palliative/end-of-life care for residents of LTC facilities (Coventry et al., 2005; Bern-Klug, 2006; Biola et al., 2007). It is widely acknowledged that an awareness of impending death is important for facilitating palliative care and symptom management (Canadian Hospice Palliative Care Association, n.d). There is also considerable agreement in modern societies that the facilitation of a good death requires open communication based on a realistic and shared understanding of the person’s prognosis (Enes & de Vries, 2004; Thompson et al., 2008). Long ago, Glaser and Strauss (1965) highlighted the challenges inherent in providing quality care for the dying when awareness of impending death is lacking or veiled in a pretence. More recently, Twycross (2002) declared ‘it is not possible to provide good palliative care without prior commitment to openness and honesty’ (p. 273). Yet, a thorough literature search revealed no articles that addressed awareness of impending death among residents of LTC facilities. Hence, a two-staged mixed-methods research study was undertaken to address the question: Is there an awareness of impending death for residents, aged 85 and older, of longterm care facilities?
Methods Quantitative and qualitative data were gathered following research ethics approval from the University of Alberta Human Research Ethics Board and administrative approvals from three participating facilities in Ontario, Canada. The three facilities were accessible for the researcher, representative of LTC facilities in the province, and interested in participating in research (Table 1). Data were gathered by the first author over a period of 131 days. Statistical data were gathered through a review of decedent charts and subjected to basic descriptive analysis. Qualitative data were gathered using methods commonly associated with ethnographic research (Roper & Shapira, 2000). © 2014 John Wiley & Sons Ltd
Table 1 Summary of participating facilities and interview participant categories Facility characteristics Facility Number of residents Number of deaths in 12 months study period Type of facility
1 172 49
2 200 66
3 256 67
Private, for profit
Proprietary, not for profit
Municipal, not for profit
Interview participant N characteristics 9 Residents aged 85 years of older (Total) Staff members Registered Nurses 3 (RN) Registered Practical 6 Nurses (RPN) Personal Support 8 Workers (PSW) Nurse Practitioner 1 Nutritionist 1 Activation 1 Administration 3 Directors of Care 3 Pastoral care worker 2 Social worker 1 Total 29 Family members of residents Spouse 9 Adult child 3 Total 12
Interviews A total of 50 semistructured interviews were conducted (Table 1). Recruitment strategies included articles in facility newsletters, attendance at family and resident council meetings, and word-of-mouth snowball methods. All interested staff members were eligible to participate. All resident participants had to be competent to understand the information provided in writing and verbally about the study. Residents who were younger than 85 years of age were not eligible to participate, nor were family members of residents who were younger than 85 years. Any potential participants who were unable to explain in their own words the information that had been provided for establishing informed consent were excluded. Consent was provided in writing or verbally by some residents who spoke their consent in the presence of a witness who was known to and trusted by the resident. In these cases, the witness signed the consent form. All participation was voluntary. 171
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Field notes were kept during all interviews after explaining to the participants that the purpose was to assist the researcher to recall significant phrases or thoughts. Consistent with accepted practices in qualitative research, the number of interviews was determined to be complete when the analysis revealed that no new information or insights were emerging (Corbin & Strauss, 2008). Generally, the initial approach was designed to build trust and interest with minimally sensitive topics and then progressively move towards more sensitive questions (Box 1). Questions and prompts evolved in relation to the unfolding interaction with each individual participant (Box 2). With residents, prompts were provided to encourage them to speak about their awareness of their own mortality or that of other residents with whom they had lived. With family members, the goal was to uncover their understanding of the potential for death for their loved one or others who lived in the facility. Staff members were encouraged to talk about the development of their own awareness that residents would die (Box 3). Terms such as palliative and end-of-life were purposefully avoided to create an opening for each participant to speak about their perceptions about the approach to death without the influence of pre-existing terminology. Interviews lasted from 30 to 90 minutes. Interviews were audio-taped, transcribed and analysed along with data from other sources as described below.
Box 1 Sample of questions from semistructured interview guide for use with family members I would like to start by getting a sense of how you understand your mother’s/father’s life, past, present and future. We can use this time line to identify the significant elements:
Box 2 Examples of probes in the interview process
Interviewer: You said earlier that “This is it” for people who live here – that they will die here. Can you tell me how you know that a resident is dying?
Family member Interview Interviewer: You were telling me that several residents have died here since your husband came here to live. Were you aware that those residents were near the end of their lives? What might have caused you to think that one of those residents would die?
Personal support worker Interview Interviewer: You said that death is a common occurrence in your work here, and you mentioned that you might even say that every resident is dying. Can you tell me when and how you come to think that a resident is dying?
Box 3 Sample of questions from the semistructured interview guide for use with staff members Does anything change for you when a resident is dying? How is care of a dying resident the same or different from one who is not dying? How do residents know that they are dying? How do residents express their awareness of dying? How do family members know that their loved one is dying? How do family members express the awareness of impending death? Are any residents dying at this time here?
Beginning
End
Your mother was born in _______? What were some events in her life that you see as having been very significant? Where should we put them on this time line? What strengths do you feel she has at present?What challenges do you feel she faces now? What challenges do you feel she faces in the future? Where do you feel we are on this time line now? Do you hope to have some advance notice of the likelihood of death?
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How do you know when a resident is going to die soon?
Focus groups One focus group of family members was held. Staff members were not able to commit to focus group meeting times and preferred to discuss findings and questions individually or by email. These communications were printed and analysed as textual data in the same manner as interview transcripts. Review of artefacts A search for artefacts that could provide insight into awareness of impending death in the LTC facilities revealed
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few items. Mission statements, policy and procedure manuals, care plans, computerised charting systems and resident Progress Notes were treated as artefacts as they are commonly used to describe or document the expectations and activities that occur in the LTC facilities. In keeping with provincial regulations requiring that residents’ clinical and functional statuses were to be assessed and recorded, Quarterly Reviews were completed on each resident every 3 months or whenever a significant change was noted. The electronic status assessments that were recorded in two of the three facilities included fields about changes in the level of support required and whether the resident’s status was considered to be terminal. Data from these fields were thus thought to reflect staff awareness of impending death. The third facility was in the process of transition to the new electronic documentation system and had not yet begun to use the change of status field. Progress Notes in each resident’s chart are the primary tool for documentation and communication of daily developments. The Progress Notes of all 182 residents who had died in the previous 12 months were scrutinised for words or phrases that suggested awareness of impending death. Examples are cited in Box 4.
Family member: What can you expect at 92 years? We didn’t think, Oh yeah, Mom is in LTC now so she’ll be dead soon, but I don’t think she’s going to live forever either (son). Resident: I came here because I figured it would be a good place to live. I’ll go out sometime too, but not under my own power. I’m going to die here.
People ought to realize when they come here – this is it (90 year old resident).
Box 6 Examples of residents’ comments related to their perception of the relevance of clinical awareness of impending death
1 I don’t think about it (dying) – I don’t have to. I know they will take good care of me here. I’ve seen it with my wife you know. No, I don’t have to worry about it. 2 I don’t have to think about it – my son will take care of everything. 3 You know, one day they are at the table for breakfast, and then they aren’t, and maybe you will hear (that they died) and maybe you won’t. You know though, you just know.
Box 4 Examples of awareness of impending death from Progress Notes
1 Resident refusing food and fluids – family notified of decline. 2 Dr. called for palliative orders. 3 Butterfly posted on resident’s door (a symbol representing imminent death). 4 Called daughter to discuss possible change of advance directive – currently at level 3 to level 1 (indicating a preference for comfort care within the facility rather than transfer to hospital). 5 Resident rang and said she was dying. I told her that her vital signs were fine so she couldn’t be dying.
Box 5 Examples of data indicating generalised awareness of awareness of impending death from Progress Notes
Staff member: Our people are at the last, right? Because this is the last stage of their life and a lot of them know that (personal support worker).
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You don’t have to be told what is going on. You don’t know when your time will come. Its alright – I have enough to think about today without thinking about tomorrow.
Analysis of qualitative data Data were analysed over time using a constant-comparative approach by the first author. The principle processes used to analyse the data were questioning and making comparisons iteratively within the data from all sources (Boeije, 2002). Boeije recommended that questions should seek to find the core messages, consistencies, inconsistencies and themes within each interview – among interviews from within the same participant group, as well as across different participant groups and among different sources of data. The resulting triangulation contributes to the confirmability of the results. Themes emerged as the data were refined from meaning segments to broad codes and then to more inclusive categories (Corbin & Strauss, 2008). Limitations of this research As data collection was limited to three LTC facilities in a single community in Canada and although their circum173
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stances are expected to be similar to many nursing homes in other jurisdictions, the findings are not representative or generalisable. It is acknowledged that the decision to aggregate the data across the three facilities may have influenced the findings. Similarly, potential differences within categories of interviewees by gender, age or duration of residence or experience were not investigated. It is also acknowledged that individuals who volunteer to participate in research interviews may not be representative of others who do not volunteer. In particular, residents who were not physically or cognitively well enough to participate, and family members who did not live in the locale or were reluctant to talk about dying and death were not included in this research study. Nevertheless, the findings of this research study and their interpretation are offered as a legitimate and significant contribution to understanding the development of awareness of impending death of residents of LTC facilities. Despite efforts to account for the researcher’s subjectivity, the analysis may have been influenced by the lens through which the data were observed and interpreted. To mitigate this limitation, participants were asked in a focus group or email to confirm the accuracy of the interpretation. Furthermore, a sample of interview transcripts was reviewed by the second author and three colleagues. All concurred with the initial coding and development of themes that emerged from the transcripts.
Results The data revealed a two-staged layered awareness of impending death in LTC facilities: first generalised and then clinical awareness. While data relevant to generalised awareness came from residents, staff and family members, data related to clinical awareness came from staff members and to a lesser extent, family members. Progress Notes data also revealed clinical awareness through staff members. Quantitative data from the Quarterly Reviews revealed neither generalised nor clinical awareness of impending death. These findings are presented in detail below. Generalised awareness Generalised awareness of death was characterised by an understanding of human mortality and that one is near the end of one’s lifespan in advanced old age. Family members, staff and residents all demonstrated generalised awareness as demonstrated in the quotations in Box 5. While none of the resident interviewees believed their own death was imminent, some realised that they could be dying at almost any time. One resident mused about the equal possibilities 174
of living another 10 years to reach 100 years of age, or ‘being gone tomorrow’. He concluded that ‘you never know’. All participants clearly acknowledged the potential for dying and death as a reality for human beings, and most particularly for those who are already very old and in advanced ill health. However, it was rare to hear that particular residents were actually dying. Typical responses from staff members to the question, ‘Is anyone here dying?’ were: ‘Not today, but you should have been here a couple of days ago – we lost Mrs. S’; and ‘No, I wouldn’t say so, but T. soon will be palliative at the rate she is going.’ These quotations suggest a second layer of awareness of impending death; one that is more clinical and restrictive. Clinical awareness as portrayed in interview data Clinical awareness of impending death was almost always acknowledged by staff members when they observed changes in a resident’s condition that suggested death was likely within the next few hours or days. Resident comments did not include data that contributed to the theme of clinical awareness of impending death yet every resident interviewee expressed that she/he was not worried about dying as they trusted that appropriate care would be provided when they were dying (Box 6). Many staff members spoke about the importance of close long-term relationships with residents for noticing a mortal turn in their health condition, for instance, one Registered Practical Nurse said: ‘We know the little norms of people. We pick up on all the very small signals [because we have] very close relationships with these people.’ Staff members also recognised that daily contact with residents could sometimes make it more difficult to recognise a gradual health decline. Occasional visitors or staff, who had not seen the resident for some time, were more sensitive to these incremental changes. One Director of Care noted that: ‘I don’t get reports about people unless there’s a significant change – when its gradual maybe you don’t see it until all of a sudden you say, Oh my goodness! … when did that happen?’. There was widespread agreement among the staff participants on the clinical evidence that was predictive of death. Participants spoke about a range of observations from early or potential signs to later and more certain indicators of impending death. Early signs of impending death included: declining participation in social activities; less zest for life, giving up; disinterest in or reduced intake of food and/or fluids; increased time spent in bed/decreased mobility; and speaking or dreaming of predecessors. © 2014 John Wiley & Sons Ltd
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Staff members noted these observations as ominous, but not as certain indicators of immediately impending death. All had witnessed residents who had rallied to life when death had seemed certain as portrayed in the following quotation of a staff member: ‘We see many people cheat death. We think they’re close to that time, but then they bounce back’ (Administrator). This reversal may explain why there was a common reluctance to consider a resident dying if there was any remaining possibility of a rally: ‘You never want to be the person who gives up on somebody’ (RN); and ‘We have some staff getting them up and dressed … right up until they are into Cheyne-Stoking’ (RN). Residents were therefore typically not considered to be dying until their health changes were very advanced and had persisted long enough that death was considered immediately inevitable. This certainty in acknowledging impending death was not possible until a few hours or days prior to the death: ‘The staff on the floor has to recognise when the time is right. We wait until they’re true end-of-life, within hours, and if we’re lucky we get days’ (Director of Care); and ‘When the butterfly goes up, many times I think, they have maybe a day’ (RN). The butterfly symbol was used in all three LTC facilities to alert staff members that a resident was likely to die soon. It was a significant artefact of clinical awareness of impending death. Some care staff members referred to the use of the Palliative Performance Scale (PPS) (Lau et al., 2006), a prognostication tool that is commonly used in palliative care units in hospital settings. They questioned its utility with a population that was already frail and highly dependent as a result of multiple co-morbidities and advanced old age: ‘I would say there is probably 25% of the population that would have a PPS of 30 [a score usually considered to be indicative of a short prognosis] or lower but they may have had that score for numerous years. We would not consider them particularly palliative … until there was a … a sharp decline, because most of these residents are already completely dependent for their activities of daily living’ (RN). Other tools for predicting risk of mortality were not used in any of the participating LTC facilities. Staff members were well aware of the signs that death was near. These were: changes in breathing patterns; decreased level of consciousness; abnormal body temperature; and mottling of the extremities. When these signs were present, staff members acknowledged the imminence of death and the routines of daily care changed for that ‘actively dying’ resident. Family member clinical awareness of impending death tended to be associated with information gained through © 2014 John Wiley & Sons Ltd
discussions with staff members close to the time of death. Staff members expressed a need for family members to be aware of impending death, in part so that they could document whether the resident was to be transferred to hospital. Staff members believed that a palliative conference was also critical to assist the family to make decisions about end-of-life care. This palliative conference was not the only means by which families became aware of impending death. One woman whose father had died while being a resident of a LTC facility and whose mother was now a resident, said: ‘You have to ask. I ask a lot of questions – if you don’t ask, they will probably think you are not ready to hear it.’ The wife of one resident reported that she was learning about the approach of death by watching patterns on the unit where her husband was a resident. She concluded that death is imminent when the resident was no longer brought to the dining room at meal time, and family members were present for more than their usual frequency of visits. Family members seemed to express varying levels of clinical awareness of impending death, depending largely on their previous experience with dying. Some family members noticed the changes and intuited their significance: ‘The staff didn’t tell us – we just sort of got that impression. I think it was about a week before he died that I heard someone mention the word palliative. I figured that meant a few days.’ Other family members relied on staff members to interpret their observations and confirm their meaning: ‘I knew she hadn’t been good - but then I got the call. If I’d known I would have been there at the end. But if you don’t have the experience, how do you really know? They are the experts. I thought they would have told me.’ Although staff members reported that dying and death were commonplace in their work, they were anxious to focus on opportunities for living well in contemporary LTC facilities as a contrast to the grim reputation of nursing homes in years gone by: ‘The generation of people that are coming in now still have that nursing home stigma in their minds from their parents and grandparents. We haven’t got over that yet’ (Administrator). Awareness of impending death as portrayed in resident charts In all three facilities, the Progress Notes section of the residents’ charts was searched for words or phrases that might indicate awareness of impending death. This source of data represents primarily a staff perspective (Box 4). The resident or family perspective was alluded to occasionally in the notes entered by staff members. Generalised awareness of impending death did not appear in residents charts. Data from the Progress Notes were consistent with the interview data from staff members in revealing clinical awareness of 175
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impending death when there was a marked change in a resident’s health status. Progress Notes were commonly written about communications with family members related to the revision of advance directives. Revisions in advance directives were common when there was a change in condition such as increased lethargy, signs of infection or declining intake of food and fluids – often within the last few days prior to death. Changes in the directives were typically towards a less interventionist approach; for example, instead of requiring a transfer to hospital, care was to be within the facility and focused on maximising comfort without disruptive or invasive procedures. These revisions provided the most tangible evidence of clinical awareness of impending death. Documentation about discussions of changes in the condition with family members usually referred to the resident’s ‘decline’ and never included the words ‘dying’ or ‘death’. However, according to the Progress Notes, some residents verbalised their readiness or wish to die to staff members using unequivocal language such as: ‘I want to die. I’m ready to go’ (92-year-old woman, 1 day prior to death), and ‘Let me go – I’m ready’ (88-year-old man, 1 ½ years prior to death).
Typically, palliative status was not noted in the records until within the last week prior to death, and usually only 1 day or two before death. A commonly documented order of events began with the recognition of a change in condition such as increased lethargy and decreased oral intake which resulted in a telephone call or fax to the resident’s physician. The resident was then deemed palliative by the physician. Orders for morphine for pain and an anticholinergic medication to dry secretions almost always accompanied this palliative designation. Notations in the Progress Notes commonly included that ‘palliative measures had been started’. There was no policy or procedure in any of the three facilities that specified the nature of palliative measures or when they should be instituted, nor does provincial legislation in Ontario provide detailed direction about inhouse standards for end-of-life care (Long-Term Care Homes Act, 2007). However, the Progress Notes implied that palliative measures included increased turning, oral care, pain management, addressing the needs of family members and posting the butterfly symbol. Documentation within the Progress Notes emphasised the expectation that death would occur within a few days of being deemed palliative. In one instance, a 98-year-old woman who lived with chronic obstructive lung disease and congestive heart failure had declined in health over a period of 7 years in the LTC facility and then developed pneumonia. 176
The physician’s note 10 days prior to her death indicated that she was ‘almost palliative’. She was designated as palliative on the day of her death. In a second instance, an 89-year-old woman who had fractured her hip returned from hospital where she had developed an antibiotic resistant infection, bloody stools and anaemia. Although she had been declined treatment for her anaemia in hospital ‘due to her overall condition’, the chart indicated that the LTC facility physician and her son agreed that ‘palliative measures should not be started as she is not palliative at this point’. She died 11 days later. Evidence of staff members’ clinical awareness of impending death was not present in the electronic Quarterly Reviews that documented changes in the level of support required by residents in two of the facilities. In 58.2% (n = 38) and 43.5% (n = 30) of cases, no change in the level of support required by residents documented had been documented in the last Quarterly Review prior to death. The need for more support at the last Quarterly Review prior to death was documented in 32.8% (n = 21) and 50.7% (n = 35) of facility records, respectively. It could not be determined from this data source whether an increase in the level of support required was temporary, or part of an irreversible decline towards death within the last 3 months of life. The Quarterly Review also documented whether the resident was considered to be terminally ill. Only 1 of the 182 decedents at the three study sites had been identified as terminally ill in the reports that were forwarded to the government agency responsible for policy decisions, funding and regulation of LTC facilities. Directors of Care were asked to comment on these documentation findings. They attributed the findings to the common practice of copying the previous Quarterly Review and clicking on the appropriate boxes if changes were required. Reviews were also completed by staff members who were not the most familiar with individual residents. It would be easy to leave condition unchanged if the staff member was uncertain about the resident’s current status. The Directors of Care stated that funding was not influenced by the amount of end-of-life care required within the LTC facility, so it was not a priority to document terminal decline for the purpose of reporting to the Ministry of Health and Long-Term Care. In summary, the data revealed a two-stage layered awareness of impending death in LTC facilities. The first generalised awareness was characterised by an understanding of human mortality and nearness to the end of a predictable life span. This generalised awareness was not prognostic, nor did it impact normal care practices. Alternatively, clinical awareness was linked to advanced signs of © 2014 John Wiley & Sons Ltd
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impending death. Clinical awareness of impending death did foretell actual death, usually within a few hours or days, and this stage was accompanied by changes in care priorities and routines.
Discussion As indicated, two stages of awareness of impeding death were identified. In the first, residents, family members and staff members acknowledged a generalised awareness of impending death as death could be expected in advanced old age regardless of the presence of life-threatening illnesses. Residents in this study did not speak of clinical awareness of their own eventual death or the deaths of other residents with whom they had lived. Like many participants in Mathie et al.’s (2012) study, they acknowledged the uncertainty of the future, focused on day to day matters and trusted that they would be well cared for when their time came. Staff and family members identified clinical awareness of impending death when changes in residents’ conditions indicated that death was immediately likely. It is possible then that much of the approach to death occurred without anyone being aware that the death was imminent or ignoring this imminence in a context of mutual pretence (Glaser & Strauss, 1965); a state in which the reality of death in the near future was known, yet unacknowledged until death was only hours or a few days away. If so, dying residents and their families may have missed opportunities for the resolution of relationships or business arrangements, timely palliative pain and symptom management, and end-of-life care planning. These circumstances reflect aspects of the everyday culture of LTC facilities which mediate the quality of dying there. Longterm care facilities are also embedded within a larger social culture that may prefer to consider death to be unnatural, untimely and tragic. This is questionably appropriate for the oldest old in LTC facilities, considering that they have already lived a life that is much longer than most and with dying in advanced old age seen as normal and expected by residents, family members and staff members. However, the question arises whether a decision to acknowledge and accept dying is allowing a natural, and perhaps preferred death, or reflecting ageist judgments about the value of the older person and the desirability of sustaining her/his life. The line between appropriate consideration of the significance of age and ageist discrimination is not clear. For many family and staff members who participated in this research study, uncertainty about the acceptability of death was resolved by considering that no one was dying until death was inevitably near. It should also be noted that although LTC facilities are charged with providing 24 hours 7 days a week care to the © 2014 John Wiley & Sons Ltd
most disabled persons, they do not enjoy a reputation of providing consistent high-quality care. In part, this issue may be related to the heritage of LTC facilities as poor houses, places where indigent persons were left to die with the barest minimum of care (Achenbaum, 1974). This low public perception persists today despite efforts over several decades to improve LTC facility conditions (Rahman & Schnelle, 2008; Rosofsky, 2009). Participation in this research study thus offered an opportunity for staff members to voice a counter discourse from within contemporary LTC facilities. Their challenge of the prevailing negative characterisation of nursing homes is summarised by Timmerman (2010): ‘Longterm care used to be a big dark unfriendly formidable place that those being admitted to referred to as the end. I am happy to shout to one and all that the nursing home is a happening place’ (p. 4). One of the inadvertent consequences of this counter discourse may be to dismiss, more completely than is helpful, the belief that frail or dependent people go to LTC facilities to die. Emphasising living in LTC, and separating living from dying, even for very frail and dependent individuals in advanced old age offers a perspective that may be palatable for a death-avoiding public. However, a single-minded emphasis on living may disenfranchise the frailest of LTC facility residents from the opportunities or resources that others who are acknowledged to be dying can access. In Ontario, the Canadian province where this research was completed, the Quarterly Reviews of residents provide data on which the provincial Ministry of Health and Long-Term Care makes policy and funding decisions. It is significant that there was little meaningful documentation of the economically important features of caring for dying residents; such increased needs for support, let alone the social, psychological and spiritual considerations that are central in palliative care. The palliative/end-of-life needs of residents in LTC facilities can thus remain invisible within the healthcare system, and also within government policy decisions. Consequently, resident care is organised according to regulatory and economic imperatives (Parker, 2011) that reflect a discourse of ‘striving to keep alive’ (Froggatt et al., 2011, pp. 266–267). As such, they may not reflect priorities in the life world of frail residents in advanced old age. Death in advanced old age has been characterised as hidden and unacknowledged, even within the field of palliative care (O’Connor, 2009). O’Connor proposed that a discourse on decrepit dying is therefore necessary to recognise ordinary and expected death in advanced old age. The findings of this research study add to the argument that a discourse of decrepit dying may be a necessary precursor to advancing knowledge, policy and programme developments 177
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that are relevant to the oldest old who live and then die in LTC facilities.
Contributions Study design: BCW, DW; data collection and analysis: BCW, DW and manuscript preparation: BCW.
Conclusions This mixed-methods research study was undertaken to answer the question ‘Is there awareness of impending death of residents in LTC facilities?’. Awareness of impending death was organised in two layers, first generalised and later clinical awareness. Generalised awareness involved the acknowledgement of a limited life expectancy for those who had lived to advanced old age. All three participant groups communicated this level of awareness. Clinical awareness, as only revealed by staff and family member participants, involved the recognition of irreversible bodily changes that would certainly and soon end in death. As awareness of impending death is arguably the first necessary step in installing a palliative approach to care for very old people living in nursing homes, timely acknowledgement of the potential for death could facilitate improvements in the care of residents of long-term facilities. This acknowledgement of impending death is also needed for appropriate policy decisions at the systems level, a matter compromised by the current data that is forwarded from long-term care facilities about the residents ‘living’ there.
Implications for practice Palliative care of dying residents of LTC facilities may be reduced to late-stage pain and symptom management when it is initiated within a few days or hours of death. Further research is needed to determine what difference a more timely awareness of impending death would make. Staff members may need to take the lead in opening the conversation with families who are caught up in a mutual pretense concerning the life and not inevitability of death of a loved-one. Further research is needed to understand why impending death is not acknowledged until very late in the decline toward death, despite the existence of an underlying awareness that death is expected and normal in the context of advanced oldage and progressive dependence. Care must be taken to ensure that the systems on which policy-makers rely for data are used accurately to portray the realities of dying and end-of-life care needs in LTC facilities.
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