Introduction
Although long-term care (LTC) homes are the place of death for most residents (Hirdes, Mitchell, Maxwell, & White, Reference Hirdes, Mitchell, Maxwell and White2011), end-of-life care in LTC homes has been reported to be suboptimal, with poor management of pain and symptoms, invasive treatments (e.g., nasogastric tube feeds), and unnecessary hospitalizations (Mitchell et al., Reference Mitchell, Teno, Kiely, Shaffer, Jones, Prigerson and Hamel2009; Small, Froggatt, & Down, Reference Small, Froggatt and Downs2007; van der Steen et al., Reference van der Steen, Radbruch, Hertogh, de Boer, Huges, Larkin and Volicer2014). End-of-life experiences are further complicated for LTC home residents with dementia as they face loss of cognitive function and opportunities for choice. This may be why people with dementia are at greater risk for poor quality end-of-life care than people without dementia (Goodman et al., Reference Goodman, Evans, Wilcock, Froggatt, Drennan, Sampson and Iliffe2010; Thuné-Boyle et al., Reference Thuné-Boyle, Sampson, Jones, King, Lee and Blanchard2010).
End-of-life decision-making significantly impacts the quality of life and care of residents with dementia. These decisions can be critical to survival, the time and place of death, and the comfort level of residents with dementia (Givens, Selby, Goldfeld, & Mitchell, Reference Givens, Selby, Goldfeld and Mitchell2012; Mitchell et al., Reference Mitchell, Teno, Kiely, Shaffer, Jones, Prigerson and Hamel2009; Toscani et al., Reference Toscani, van der Steen, Finetti, Giunco, Pettenati, Villani and Di Giulio2015). LTC home staff, including personal support workers (PSWs), registered practical nurses (RPNs), and registered nurses (RNs), spend significant time and are familiar with residents with dementia and their family members; however, little attention has been paid to how everyday relationships and interactions among residents, family members, and staff in the LTC homes shape decision-making processes for people with dementia. The LTC home staff’s and families’ personal knowledge of the person with dementia has led to better assessments (Chang et al., Reference Chang, Daly, Johnson, Harrison, Easterbrook, Bidewell and Hancock2009) and prevented potentially harmful transfers to hospital (Robinson, Bottorff et al., Reference Robinson, Bottorff, Lilly, Reid, Abel, Lo and Cummings2012). These informal interactions involving discussions of the resident’s preferences, history, changes, and expected outcomes may be critical to informing decision-making. Yet LTC home staff involvement in end-of-life decision-making has been largely unacknowledged. We sought to address this gap by examining staff perceptions of their involvement in end-of-life decision-making. The research question that guided this study was: What are the barriers and facilitators to LTC home staff’s involvement in end-of-life decision-making for people with dementia? For this article, we report on the barriers to LTC home staff involvement in decision-making for people with dementia.
End of Life, Palliative Care, and a Palliative Approach for People with Dementia
The time of end of life is inconsistently defined for LTC home residents with dementia. Evidence indicates that people with dementia typically encounter infections and nutritional problems during the last six months of life for which family must make decisions about the administration of antibiotics, hydration, nutrition, or treatment of symptoms related to pain or restlessness (Givens et al., Reference Givens, Selby, Goldfeld and Mitchell2012; Mitchell et al., Reference Mitchell, Teno, Kiely, Shaffer, Jones, Prigerson and Hamel2009; Toscani et al., Reference Toscani, van der Steen, Finetti, Giunco, Pettenati, Villani and Di Giulio2015). These end-of-life decisions can potentially lead to aggressive treatment, compounded delirium, unnecessary suffering, or death at hospital, and impacts on the quality of life for the person with dementia. Family members have described this time of decision-making as one of uncertainty and ambiguity (Caron, Griffith, & Arcand, Reference Caron, Griffith and Arcand2005b; Lopez, Reference Lopez2007, Reference Lopez2009), and while family decision makers have specified goals towards quality of life (96%), nearly half (41%) of LTC home residents with dementia have received aggressive treatment that is of little benefit in the advanced stages (Mitchell et al., Reference Mitchell, Teno, Kiely, Shaffer, Jones, Prigerson and Hamel2009). These findings raise serious questions about the processes and interactions involved in end-of-life decision-making for people with dementia.
A key factor to improving end-of-life for LTC home residents with dementia is decision-making about palliative care early in the illness trajectory (van der Steen et al., Reference van der Steen, Radbruch, Hertogh, de Boer, Huges, Larkin and Volicer2014). Palliative care is a holistic approach that aims to relieve suffering and focus on comfort and quality of life (World Health Organization, 2011). However, as chronic conditions such as Alzheimer’s disease can have long and fluctuating disease trajectories, with progressive loss of functioning, it is difficult for health care providers to accurately predict when death may occur (Mitchell et al., Reference Mitchell, Teno, Kiely, Shaffer, Jones, Prigerson and Hamel2009; Sawatzky et al., Reference Sawatzky, Porterfield, Lee, Dixon, Lounsbury, Pesut and Stajduhar2016; van der Steen et al., Reference van der Steen, Radbruch, Hertogh, de Boer, Huges, Larkin and Volicer2014). A palliative approach has been promoted in which palliative care is provided long before death occurs (Sawatzky et al., Reference Sawatzky, Porterfield, Lee, Dixon, Lounsbury, Pesut and Stajduhar2016). Instead of palliative care specialty services, a palliative approach is integrated into non-specialized care units such as LTC homes with existing generalist staff. A palliative approach in LTC homes blends philosophies of rehabilitation and palliative care throughout the resident’s stay (Sawatzky et al., Reference Sawatzky, Porterfield, Lee, Dixon, Lounsbury, Pesut and Stajduhar2016), and focuses on relational care involving early and ongoing discussions among family, members of the health care team (Sawatzky et al., Reference Sawatzky, Porterfield, Lee, Dixon, Lounsbury, Pesut and Stajduhar2016; van der Steen et al., Reference van der Steen, Radbruch, Hertogh, de Boer, Huges, Larkin and Volicer2014), and all workers who come in contact with the resident (e.g., PSWs or housekeeping staff) (Kaasalainen et al., Reference Kaasalainen, Sussman, Bui, Akhtar-Danesh, Laporte and McCleary2017; Pallium Canada, 2018; Sims-Gould et al., Reference Sims-Gould, Wiersma, Arseneau, Kelley, Kozak, Habjan and MacLean2010). This study took place following a research project (Kaasalainen et al., Reference Kaasalainen, Williams, Hadistavropoulos, Thorpe, Whiting, Neville and Tremeer2010; Kelley & McKee, Reference Kelley, McKee, Hockley, Froggatt and Heimell2012; Sims-Gould et al., Reference Sims-Gould, Wiersma, Arseneau, Kelley, Kozak, Habjan and MacLean2010) that implemented a palliative approach in two urban LTC homes.
A major component constituting a palliative approach is advance care planning (ACP), defined as formalized discussions of an individual’s future preferences, in the case that the individual loses decision-making capacity (Robinson et al., Reference Robinson, Dickinson, Rousseau, Beyer, Clark, Hughes and Exley2012b). However, ACP can be problematic for people with dementia because of issues such as the timing of professionals to introduce ACP and the unwillingness of people with dementia and family to discuss the future (Lord, Livingston, & Cooper, Reference Lord, Livingston and Cooper2015; Robinson et al., Reference Robinson, Dickinson, Rousseau, Beyer, Clark, Hughes and Exley2012b). Moreover, the principle underlying ACP to maintain the autonomy of the individual overlooks how a person’s sense of self and social events such as death or decision-making occur within the context of relationships (Sabat, Reference Sabat2005), and it does not reflect the concept of personhood (Kitwood, Reference Kitwood1997), an idea that has been pivotal in bringing attention to the link between the subjective experiences of people with dementia and their relationships with others (O’Connor & Purves, 2009). Advance care planning does not include the contemporary subjective experiences of the person with dementia and the relationships and contextual factors surrounding end-of-life decision-making. However, a palliative approach philosophy that emphasizes ongoing relationships rather than the disease integrates the concept of personhood.
End-of-Life Decision-Making for People with Dementia
Both formal and informal discussions among family members and staff have been found to be critical to relationships and positive decision-making experiences in LTC homes (Black et al., Reference Black, Fogarty, Phillips, Finucane, Loreck, Baker and Rabins2009; Caron, Griffith, & Arcand, Reference Caron, Griffith and Arcand2005a). However, findings from a systematic review indicate that family members have not been consistently supported in decision-making and have been dissatisfied with the process (Petriwskyj et al., Reference Petriwskyj, Gibson, Parker, Banks, Andrews and Robinson2014). Many have complained about the lack of communication with care providers (Caron et al., Reference Caron, Griffith and Arcand2005b; Davies et al., Reference Davies, Maio, Vedavanam, Manthorpe, Vernooij-Dassen and Illife2014; Hennings, Froggatt, & Keady, Reference Hennings, Froggatt and Keady2010); when there has been communication, it has often been during times of crisis (Hennings et al., Reference Hennings, Froggatt and Keady2010). Not wanting sole responsibility, family members have relied on LTC home staff to proactively discuss changes to their relatives’ conditions (Forbes, Bern-Klug, & Gessert, Reference Forbes, Bern-Klug and Gessert2000; Goodman et al., Reference Goodman, Evans, Wilcock, Froggatt, Drennan, Sampson and Iliffe2010). Moreover, family are grieving at the same time as they are making decisions (Hennings et al., Reference Hennings, Froggatt and Keady2010), thus needing continual explanations from staff throughout the resident’s stay (Bern-Klug, Reference Bern-Klug2008). How and when these interactions are enacted in decision-making processes needs further analysis.
Research examining staff perspectives of their involvement in end-of-life decision-making has indicated that LTC home staff tends to be excluded, and exclude themselves, from decision-making. Studies have found that nurses perceive a lack of power and knowledge and are ambiguous regarding their role related to end-of-life conversations (Laging, Ford, Bauer, & Nay, Reference Laging, Ford, Bauer and Nay2015; Lopez, Reference Lopez2007, Reference Lopez2009; Reimer-Kirkham, Sawatzky, Roberts, Cochrane, & Stajduhar, Reference Reimer-Kirkham, Sawatzky, Roberts, Cochrane and Stajduhar2016; Sawatzky et al., Reference Sawatzky, Porterfield, Roberts, Lee, Liang, Reimer-Kirkham and Thorne2017). Nurses have characterized their role as playing the middle person between family members and physicians (Bryon, Gastmans, & de Casterle, Reference Bryon, Gastmans and de Casterlé2008; Lopez, Reference Lopez2007, Reference Lopez2009). Structural issues such as a lack of formal policies (Ramsbottom & Kelley, Reference Ramsbottom and Kelley2014) of staff and family roles in decision-making have been identified. However, other studies examining palliative care in LTC homes have found that nurses (Dreyer, Ford, & Nortvedt, Reference Dreyer, Ford and Nortvedt2011; Kaasalainen, Brazil, Ploeg, & Martin, Reference Kaasalainen, Brazil, Ploeg and Martin2007) and PSWs (Bauer, Reference Bauer2007; Munn et al., Reference Munn, Dobbs, Meier, Williams, Biloa and Zimmerman2008; Waskiewich, Funk, & Stajduhar, Reference Waskiewich, Funk and Stajduhar2012) listen to, inform, and prepare families for end of life. Because of a perceived lack of power, staff may be more comfortable to discuss end of life after formal decisions are made for goals towards comfort. Other studies have found that end-of-life decision-making tools (e.g., Liverpool Care Pathways) have helped to empower nurses and PSWs to be involved in decision-making (Watts, Reference Watts2011).
The literature suggests that positive relationships and discussions among family and staff are needed to lead to palliative care goals (Caron et al., Reference Caron, Griffith and Arcand2005b; Hennings et al., Reference Hennings, Froggatt and Keady2010). To enhance quality of life for people with dementia in LTC homes, there needs to be a nuanced understanding of what hinders these important staff, resident, and family relationships and decision-making interactions. For a comprehensive understanding, however, end-of-life decision-making for residents with dementia needs to be contextualized within the culture of LTC homes.
End-of-Life Decision-Making in the Context of Long-Term Care Homes
Much of the research conducted in LTC homes has pointed to the hierarchical culture. Direct care workers, including PSWs, RPNs, and RNs, tend to work separately and make known their status through distinctions, such as how they are named, and the type of work expected of them (Banerjee, Armstrong, Daly, Armstrong, & Braedley, Reference Banerjee, Armstrong, Daly, Armstrong and Braedley2015; Baumbusch, Reference Baumbusch2008; Diamond, Reference Diamond1992; Kontos, Miller, & Mitchell, Reference Kontos, Miller and Mitchell2010). These stratifications have been classified according to the level of education, placing unregulated PSWs with the least education to the bottom of the hierarchy. PSW bodily work has been considered low on the ladder, and physicians and RNs with clinical, objective knowledge have achieved higher status (Banerjee et al., Reference Banerjee, Armstrong, Daly, Armstrong and Braedley2015).
Additionally, LTC homes have been structured predominately by a biomedical paradigm (Baumbusch, Reference Baumbusch2008; Gubrium, Reference Gubrium1975), making the focus of care on maintaining life (Banerjee & Rewegan, Reference Banerjee and Rewegan2016; Diamond, Reference Diamond1992; Foner, Reference Foner1995). This medicalization of LTC homes has also led to a focus on body parts and measurable outcomes. Long-term care routines are thus organized around body work of toileting, cleaning, and meal and medication times (Wiersma & Dupuis, Reference Wiersma and Dupuis2010). As a result, staff’s work is often understood in terms of “tasks” to be done (Banerjee & Rewegan, Reference Banerjee and Rewegan2016; Henderson, Reference Henderson, Vesperi and Henderson1995; Wiersma & Dupuis, Reference Wiersma and Dupuis2010), with little priority given for staff to develop relationships and engage in end-of-life discussions with families and residents.
The LTC home literature often describes relationships between staff and family members as uneasy (Austin et al., Reference Austin, Goble, Strand, Mitchell, Thompson, Lantz and Vass2009; Bauer, Fetherstonhaugh, Tarzia, & Chenco, Reference Bauer, Fetherstonhaugh, Tarzia and Chenco2014; Baumbusch & Phinney, Reference Baumbusch and Phinney2014; Haesler, Bauer, & Nay, Reference Haesler, Bauer and Nay2007; Ward-Griffin, Bol, Hay, & Dashnay, Reference Ward-Griffin, Bol, Hay and Dashnay2003), in part because family and staff have misunderstood and under-valued each other’s roles (Bauer et al., Reference Bauer, Fetherstonhaugh, Tarzia and Chenco2014; Ward-Griffin et al., Reference Ward-Griffin, Bol, Hay and Dashnay2003). Although staff appreciate that family members assume tasks such as feeding, staff have viewed family as outsiders and have limited family involvement in care (Bauer, Reference Bauer2007; Baumbusch & Phinney, Reference Baumbusch and Phinney2014). Family members also have actively controlled situations by being assertive or limiting engagement with staff (Gladstone, Dupuis, & Wexler, Reference Gladstone, Dupuis and Wexler2007), suggesting that both staff and family hold power to shape relationships and practices in LTC homes.
Additionally, death has largely been hidden within LTC homes. Dying residents have often been secluded and deaths have been unrecognized, without ceremony (Diamond, Reference Diamond1992; Munn et al., Reference Munn, Dobbs, Meier, Williams, Biloa and Zimmerman2008). Alongside heavy workloads and hierarchical work environments, other barriers have been identified such as lack of LTC home leadership and staff’s lack of knowledge and discomfort with death (Brazil, Brink, Kaasalainen, Kelley, & McAiney, Reference Brazil, Brink, Kaasalainen, Kelley and McAiney2012; Kaasalainen et al., Reference Kaasalainen, Williams, Hadistavropoulos, Thorpe, Whiting, Neville and Tremeer2010; Kelley & McKee, Reference Kelley, McKee, Hockley, Froggatt and Heimell2012; Sims-Gould et al., Reference Sims-Gould, Wiersma, Arseneau, Kelley, Kozak, Habjan and MacLean2010). Given the complexities of LTC homes, a contextual analysis is needed to gain in-depth understanding of the barriers to LTC home staff members’ involvement in end-of-life decision-making for people with dementia.
Methods
We used an interpretive descriptive design (Thorne, Reference Thorne2008) to move beyond description and gain theoretical understanding of barriers to staff involvement in decision-making. The purpose of this design is to locate subjective experiences within common understandings and broader contexts. This methodology is appropriate to examine barriers to a staff member’s decision-making involvement, a practice process that is constructed through both subjective and collective understandings.
Recruitment and Sample
After obtaining approval from two Research Ethics Boards, we recruited participants from two urban not-for-profit facilities, one owned by a charitable organization (112 beds) and one by the municipality (150 beds). We obtained permission from LTC home managers and placed recruitment notices on units describing the purpose and process of the study. We also arranged short presentations on the units to explain to staff the study and what could be involved in participating. Interested participants approached or called the researcher to arrange an appointment. Inclusion criteria for the study were (a) to be employed in the facility as a PSW, RPN, or RN; (b) to work on the unit for at least one year; and (c) to speak English well enough to participate in a conversation about their experiences.
As the first author and primary investigator, I (NS) obtained written, informed consent from 21 participants (RNs [n = 4], RPNs [n = 8], and PSWs [n = 9]) prior to data collection, which occurred from April to December 2016. Participants included four males and 17 females, of which 16 were full-time and five were part-time employees (see Table 1). Fifteen participants had LTC home work experience greater than 10 years, and all received additional palliative and/or dementia care education through in-services or other formal education.
Table 1: Profile characteristics of study participants
Note. FT = full-time; PT = part-time; PSW = personal support worker; RPN = registered practical nurse; RN = registered nurse
a Columns may not total 100% as more than one category, or no category, could be selected
b Degree outside of health care
In-Services: Education provided by LTC homes (e.g., PIECES, dementiability, gentle persuasive approach)
Courses: Certificate, college or university
Data Collection
We conducted semi-structured face-to-face interviews for which participants received an honorary gift card of $10. Apart from one interview conducted at a coffee shop, all others were conducted in private rooms made available at the LTC homes. I asked open-ended questions such as “What is a palliative approach?”; “How are you involved in end-of-life discussions?”; “What helps or hinders your involvement?” A research assistant and I also conducted a focus group to acquire detailed explanations and share and confirm common experiences (Lambert & Loiselle, Reference Lambert and Loiselle2008). For the focus group, there were three participants – a PSW, an RPN, and an RN – all of whom had participated in individual interviews. All interviews were digitally recorded and transcribed verbatim for analysis. Consistent with qualitative research, we conducted data collection and data analysis concurrently.
Data Analysis
We conducted data analysis through thematic analysis (Lofland, Snow, Anderson, & Lofland, Reference Lofland, Snow, Anderson and Lofland2006). Initially, the first and third authors conducted line-by-line analysis, labelling phenomena and patterns. In this process, we developed general categories. We continually compared categories to existing and new data until patterns emerged. This was the start of a focused coding that involved development of conceptual themes and constant comparison of themes with data. The team discussed the emerging themes, and although there were no disagreements, there were lengthy discussions of the relevancy of the themes to the findings, thus adding rigour to the study. Trustworthiness was also attained by maintaining an audit trail of codes and memos and returning to participants. We used NVivo software to enter transcripts and manage data coding and retrieving.
Findings
Using interpretive descriptive design, we identified four barriers to staff involvement in decision-making for people with advanced dementia: (a) the predominance of a biomedical model of care; (b) a varied understanding of a palliative approach; (c) challenging relationships with families; and (d) a discomfort with discussing death. These themes are interconnected. For instance, the privileging of a biomedical model of care contributed to staff’s discomfort in discussing death with family members. Further explication is provided as themes are discussed.
Predominance of a Biomedical Model of Care
Regulated documentation in LTC homes required staff to routinely assess residents’ biomedical signs of health and wellness. Consequently, staff members tended to focus on residents’ patterns of elimination, nutrition, or movements. Thus, care and interactions related to care were framed around bodily functions, as one nurse suggested:
A lot of times when you’re looking through the documentation, there is going to be different things … whether it’s their vitals are changing or … different subtle hints. Whatever is going on in the body … the in and output. Anything that I’m seeing changing, like any wounds, shortness of breath (RPN5).
Decision-making was also focused on bodily functions and treatments to resolve issues:
We’ll see the trend when we do documentation every three months … and that’s generally when we get involved is when eating and drinking tends to slow down, because now it’s becoming a medical discussion with the families … “Okay this is what we are seeing. What are we doing? Do you want us to try to rehydrate them? Do you want us to try some antibiotics?” (RN4)
The RN first offered the family choices for medical treatment, rather than discussing the history, values, and preferences of the person with dementia. The privileging of the biomedical model of care in LTC homes constructed knowledge of values and emotions as trivial and less important knowledge, potentially precluding staff members from discussing personal knowledge of the person with dementia. One PSW described self-expectations to be able to provide biomedical knowledge and aid in decision-making:
I have tried [to talk to family,] and if I still can’t [get] through to them, then I do direct them to the RN. They know a lot more medical terms, more pain meds … I think the RN can explain it a little bit better than I can. … But I do know … a lot of the meds and what goes on and I can explain that, but sometimes they need … more authority. I guess because a lot of times the family just looks at us that we’re just the bum wipers. (PSW3)
The PSW sensed that the caring of bodies was viewed to be of lower status compared to clinical knowledge related to physiological functioning and medical treatments. One PSW described how computer documentation left little time for the emotional work done in LTC homes:
The PSWs are charting. It used to take 5 minutes and now we can be on the computer for 45 minutes. … and that’s not even getting on the computer to chart about the little lady who is saying, “Please don’t let me die.” Like that is so important too … but that’s not being captured. If it’s not written, it’s not said or done … and there’s so much (PSW7).
Regulated documentation tended to frame care and discussions around bodily functions and thus constrain staff responses and shape their everyday attitudes and practices. The predominance of the biomedical model in LTC homes tended to exclude and silence not only staff care work and their personal knowledge of the residents’ emotions or preferences, but what may be also highly meaningful interactions among staff, residents, and families about decision-making towards quality of life for the person with dementia. This singular focus also shaped staff’s understanding of palliative care and a palliative approach.
A Varied Understanding of a Palliative Approach
Most participants perceived palliative care to be within a traditional medical model of care in which palliative care is provided only when curative treatment is exhausted. Although a few staff members articulated an understanding of early and ongoing discussions as key to a palliative approach, most referred to palliative care as a transition to end of life: “Well, when they are palliative – when we decide for end of life, nothing more to do for them – there is nothing more” (PSW1). The terms end of life, palliative care, and care directives often were used interchangeably in discussions. This conflation of terms was a source of confusion which led many staff to reduce the concept of palliative care to acquiring care directives. As one participant stated:
[There is] contact with the family to discuss the treatment direction, really based on the resuscitation, whether it’s primary or … Often those discussions haven’t necessarily taken place thoroughly or consistently so, [we may say], “This is what we’re seeing and this is what the treatment directive indicates at this time, and just to confirm with you, what the treatment direction would be – would you want [your relative] sent to hospital or kept here?” (RN3)
In this context, staff may discuss goals and directives only when end of life was near or during times of crisis. Additionally, palliative care was viewed as a type of care provided, as described by one staff member:
But [with] palliative [care], residents are in bed most of the time … we change them after two hours if they are in bed, [and] turn [reposition them], so they don’t have any bed sores or any infection there. And palliative means … we do everything for them (PSW6).
Rather than adopting a philosophy of caring, palliative care was considered a set of physical tasks to be completed. Such an approach places attention on the physical aspects of care rather than focusing on residents’ and family members’ emotions, history, preferences, and quality of life throughout the stay in the LTC home. With a focus on daily tasks, staff members fail to think about future events, possibilities, discussions, or psychosocial needs of the resident and family, thus having an overall effect of impeding end-of-life discussions.
Participants in our study also had a varied understanding of end-of-life decision-making. A few participants described decision-making as offering residents choices in everyday living in LTC homes. Most assumed that end-of-life decision-making was a rational decision to be made in a formal meeting:
[Doctors] like to have a family meeting so that [family] are formally in front of them, explaining … if their treatment directive is in comfort care or it’s send to hospital (PSW7).
It’s a very emotional time and … I feel I’m in the best position to help direct that interaction, because I’m the least emotionally involved in that relationship. (RN1)
By viewing decision-making as occurring at one time, staff may not be proactive in engaging in everyday discussions with family about the resident’s deterioration. Also, staff would be inclined to put off discussions that they assumed would be better accomplished in formal, private interactions and with “higher level” providers. Staff members thus may not have discussions to avoid often difficult conversations with family members who may be experiencing grief and loss.
Challenging Relationships with Family
Another barrier to engaging in end-of-life discussions was staff’s perceptions of dealing with family members, whom staff recognized as experiencing guilt and denial. Because of family emotions, staff anticipated that some interactions with family members may be uneasy. A nurse described family members’ experiences of emotions and sense of denial:
I find in my experience that [family] don’t want to say bye yet, because they have a feeling of guilt of not being there … when they bring that person in to the LTC home. They wanted to care for them … at home, but they couldn’t anymore, the safety wasn’t there. ... I try and see it through their eyes. (RN2)
Most staff members commented that a predominant complaint by family members was when the resident with dementia refused to eat. Family members frequently attributed the relative’s reluctance to eat to staff’s lack of attention and time to care. As stated by two staff members:
I’ve seen families who are in denial: “[Dad] eats when I’m here, you know,” [Family members] are able to encourage a little bit more … and the relative might eat for them. But if we go and try, [the resident is] not going to eat for us. Sometimes the family is in denial, they don’t want to see it. They say, “[Dad] does that for me, so I don’t know what you’re talking about.” (PSW3)
The family member is saying, it must be the staff approach. The resident is becoming more aggressive [and family say]: “They are not aggressive with me. They are not resistive with me.” (RPN 2)
The family member’s reluctance to believe staff may have led to nurse and PSW perceptions that their knowledge and expertise were not appreciated. These struggles could potentially lead to tense relationships and an avoidance of discussions. One nurse described the delicate approach used to interact with family members who were not accepting of the resident’s possible death:
I would just reinforce [to family] that [the resident] was not eating, [that] the body needs nutrition and if they’re not getting the adequate nutrition and hydration, sometimes the body shuts down. I would possibly say the same things repetitively, without being argumentative (RPN5).
Although empathetic, staff members at times were anxious about possible confrontations with family. Most staff members referred families to the “higher-level” health care worker (e.g., RN or physician), if family members were not accepting of the resident’s decline. Thus, the thought of confrontations with family could preclude staff from engaging in spontaneous discussions about the disease trajectory and expected outcomes. Also, staff may have believed it pointless to have discussions with family members who did not believe them and who denied the possibility of death for the relative with dementia. From this perspective, staff-family interactions may be imbued with power struggles, rather than grounded in a collaborative, partnership approach. Also, staff members were uncomfortable about discussions related to death.
Discomfort with Discussing Death
Participants expressed a general discomfort with discussing the possibility of death. Most assumed that speaking to family about future possibilities entailed discussing death when it was near. One PSW stated:
Palliative care, it’s just hard in general. Talking to somebody about their mother dying or their father dying never gets easier. Even teaching them earlier … it may be … nothing will ever prepare you for losing a family member … it’s never easy (PSW1).
Because staff members were uncomfortable discussing the possibility of death, staff tended to converse about end of life indirectly. Some used subtle language or employed the use of metaphors and euphuisms. One nurse stated:
We try to do it subtly. So, that, you don’t go up to somebody and say [in] a cold, callous way, “Hey, your parent is dying.” You try to do it as gently. For instance, if a person is not eating, you say, “You know what, they’re not eating, it’s the way that the body is … the natural course … Or maybe Dad’s having a hard time swallowing because he’s having a hard time getting his breath” (RPN5).
Staff sending subtle messages to family members about deterioration and possible death of a relative would not provide the candid information that family members may need. Leaving out essential end-of-life conversations could also lead to mistrust and a breakdown in staff-family relationships. One staff member described how truthful discussions, though difficult, may lead to more positive relationships:
[Family] will ask, “Is my Mom ever going to get better?” I’ve heard staff say … “Well … that’s possible, that could happen” – just because they don’t know how to let them down … [Some say] “I don’t want to burst anyone’s bubble.” But … people need to know where they stand and so my response … might sound a little bit harsh, [I say]: “No, I don’t think so, I think that we are just going to continue to see these things happen.” I say … “I will help you, I will let you know what I think is coming. I can’t tell you anything for sure, but I can tell you what I’ve seen in the past and how this develops …” I have a person in my mind that I had a similar conversation with, and the look on his face was somewhat hurt at the time, but the next day that person came back and said, “thank-you so much” (PSW8).
Staff members reluctant to “burst anyone’s bubble” expressed the importance of maintaining an environment in which residents could be happy:
We just tell [family], “Oh my God, today your Mom … she was so happy, she was painting and drew a nice picture … she was enjoying, smiling, laughing, so we tell them that … just like the good things and less … if she’s not feeling good. And [if] they ask, “Why is she in bed?” I have to tell them that this … happened ... [then], I report it … I won’t say any negative to them (PSW6).
I have so many clients – I just try to be that friendly face that’s encouraging, give them their pills, listen to their needs. It’s not like I’m talking about death every day with them unless someone said, you know, “I’m depressed, I want to die” … and then you have to inquire more (RPN8).
These statements suggest that there is a delineation between living and dying, rather than a philosophy of living well while ill and dying. Staff members perceived that they had a responsibility to ensure that residents were “happy”. Additionally, family members may consider residents’ appearances and deportment as reflective of staff’s work. Staff also perceived that keeping residents happy was counter to discussing deterioration, probable expectations, and possible death. However, although conversations about the resident’s good days may be important for family members to hear, family members want and need knowledge about what may be expected to better prepare for end of life and decision-making towards quality of life.
Another barrier to end-of-life discussions was staff’s fears of giving misinformation. One staff member expressed her discontent that she was unable to predict a resident’s disease trajectory:
One of our nurses left me a note saying call this family member … So I phoned him … asked him to come in and … We had a great conversation about [his mother’s] likes, her dislikes, what he expected. I explained to him about our different initiatives … also, I talked to him about our pain and symptom management consultant … and he was really happy … Unfortunately, right now I’m seeing … her deteriorate and it’s not what I told him. That really upsets me, that really upsets me. (PSW7)
Although there is considerable uncertainty in predicting time of death for people with chronic conditions, staff members tended to blame themselves for stating imprecise information on how the end stages would unfold. Staff members’ fears of discussing end-of-life issues were largely driven by their perceived lack of biomedical knowledge.
Discussion
Using an interpretive descriptive design, this study sheds light on the barriers to staff involvement in decision-making for people with dementia in LTC homes. This study contributes to findings in the literature that suggest LTC home policies and practices have not yet been tailored to a relational approach to palliative dementia care (Banerjee & Rewegan, Reference Banerjee and Rewegan2016), thus hindering staff’s involvement in end-of-life discussions and decision-making. Our study suggests that the privileging of the biomedical model in the LTC home, while important, tends to exclude other sources of knowledge such as information that arises from personally knowing people with dementia, their biographical history, or preferences. Along with this hierarchy of knowledge, the stratification of labour in LTC homes tends to hamper authentic collaborative teamwork. Additionally, our study reflects findings in the literature of participants’ varied understanding and uptake of a palliative approach as a model of care rather than a philosophy woven into everyday care (Forbes et al., Reference Forbes, Bern-Klug and Gessert2000; Sawatzky et al., Reference Sawatzky, Porterfield, Lee, Dixon, Lounsbury, Pesut and Stajduhar2016). Overall, findings from this study suggest that, as relationships between and among residents, family, and staff are crucial to end-of-life discussions and decision-making for people with dementia, more attention needs to be paid to the relational, social, and emotional aspects of LTC home dementia care.
Study findings suggest that the privileging of biomedical knowledge in LTC homes tends to exclude other types of knowledge relevant to care. Scholars (Benner & Tanner, Reference Benner and Tanner1987; Chinn & Kramer, Reference Chinn and Kramer2011; Kontos & Naglie, Reference Kontos and Naglie2009) have emphasized experiential, “practical” or intuitive knowledge, in addition to biomedical knowledge in the provision of care. Kontos and Naglie (Reference Kontos and Naglie2009) found that PSWs use knowledge of the resident’s personal history, sociocultural background, nuances, and preferences to help with dressing, eating, and decision-making. However, this tacit knowledge has been marginalized because primacy is given to scientific and economic-based concerns (Banerjee & Rewegan, Reference Banerjee and Rewegan2016; Barken & Lowndes, Reference Barken and Lowndes2018). As found in our study and others (Lopez, Reference Lopez2007, Reference Lopez2009), a biomedical focus has led staff to perceive that decision-making involves an objective knowledge and that personal and subjective knowledge is less important. This privileging of physical needs over psychosocial needs (Banerjee & Rewegan, Reference Banerjee and Rewegan2016; Barken & Lowndes, Reference Barken and Lowndes2018; Ryan, Nolan, Reid, & Enderby, Reference Ryan, Nolan, Reid and Enderby2008) may have prevented staff in our study from actively engaging in relational care and end-of-life discussions. Although we are not suggesting that objective knowledge is unimportant, we contend that knowledge beyond the biomedical paradigm should also be valued and considered in decision-making, particularly to promote a humane, relational approach to dementia care.
Study findings also suggest that although there was a team approach, the hierarchy in LTC homes may have prevented genuine interprofessional collaborative practice. Nurses and PSWs in our study referred “challenging” situations to “higher level” providers, indicating a regimented order of communication and labour. Family meetings were considered formal gatherings arranged primarily for physicians and did not include PSWs. These findings suggest that PSWs worked remotely from physicians and within their relegated confines. Similar to our study, research has indicated that family and LTC home workers at times undervalue and exclude PSW knowledge (Banerjee et al., Reference Banerjee, Armstrong, Daly, Armstrong and Braedley2015; Kontos et al., Reference Kontos, Miller and Mitchell2010). Nurses also have been dominated by other professionals and administrators (Halcomb, Shepherd, & Griffiths, Reference Halcomb, Griffiths and Sheperd2009; Ho, Jameson, & Pavlish, Reference Ho, Jameson and Pavlish2016) and often lack confidence and understanding of their role in end-of-life discussions and decision-making (Lopez, Reference Lopez2007, Reference Lopez2009; Reimer-Kirkham et al., Reference Reimer-Kirkham, Sawatzky, Roberts, Cochrane and Stajduhar2016). The focus on biomedical knowledge and lack of support from other disciplines may contribute to staff role ambiguity (Laging et al., Reference Laging, Ford, Bauer and Nay2015). Taking on roles such as facilitating end-of-life decision-making discussions requires not only subjective perceptions of the role, but a collective understanding of team roles and functioning. Further research is needed to examine how direct care staff function within the power dynamics of the LTC home interdisciplinary team.
Additionally, our study revealed that participants had a varied understanding of palliative care and a palliative approach. Similarly, Sawatzky et al. (Reference Sawatzky, Porterfield, Roberts, Lee, Liang, Reimer-Kirkham and Thorne2017) found that incorporating a palliative approach to acute and LTC home units rested on how it was understood in practice contexts. Some staff viewed palliative care as a specialty model of care. In our study, participants’ understandings were a result of their attachment to traditional models in which palliative care is initiated only when curative treatment is exhausted. This understanding dichotomizes care that is imbued with cure and hope from care that involves acceptance and decline of death. This dichotomy tends to place the focus of care on the physical death and risks viewing death as a technical procedure (Banerjee & Rewegan, Reference Banerjee and Rewegan2016) and palliative care as relevant only to those actively dying (Thompson & Roger, Reference Thompson and Roger2014; Small et al., Reference Small, Froggatt and Downs2007). Ontario LTC homes have been mandated under the LTC Home Act (Ministry of Health and Long-Term Care, 2007) to incorporate a restorative model of care that maintains physical functioning. Although important, a singular focus on physical and mental functioning without consideration of relationships is in opposition to caring for people with dementia and people who are dying (Banerjee & Rewegan, Reference Banerjee and Rewegan2016; Small et al., Reference Small, Froggatt and Downs2007). Moreover, separating palliative care from treatment-oriented care can unintentionally create a liminal space between living and not dying, a space of ambiguity in which dying residents with dementia may be marginalized as “non-persons” (Small et al., Reference Small, Froggatt and Downs2007; Syme, Reference Syme2011).
Although the health care system tends to divide care as acute or palliative (Petriwskyj et al., Reference Petriwskyj, Gibson, Parker, Banks, Andrews and Robinson2014), research has shown that patients with life-limiting conditions and their family members transition over time (Barnard, Towers, Boston, & Lambrinidou, Reference Barnard, Towers, Boston and Lambrinidou2000; Black et al., Reference Black, Fogarty, Phillips, Finucane, Loreck, Baker and Rabins2009; Caron et al., Reference Caron, Griffith and Arcand2005b; Hansen, Archbold, Stewart, Westfall & Granzini, Reference Hansen, Archbold, Stewart, Westfall and Ganzini2005). In examining patients and families in palliative care, Barnard et al. (Reference Barnard, Towers, Boston and Lambrinidou2000) found that the transition to palliative was rarely unidirectional and was instead oscillating from acceptance to denial. Thus, there must be a focus on quality of life that integrates both restorative and palliative care over time (Thompson & Roger, Reference Thompson and Roger2014). This is consistent with a palliative approach that emphasizes early integration and ongoing discussions to ensure quality of life.
Another factor that has contributed to a varied understanding is that participants in our study understood a palliative approach as a model of care, rather than a philosophy to be integrated into daily practice. Similarly, studies have found that a palliative approach must be viewed as a philosophy of care to be embedded in daily workings of care units, rather than a set of practices (Forbes et al., Reference Forbes, Bern-Klug and Gessert2000; Sawatzky et al., Reference Sawatzky, Porterfield, Roberts, Lee, Liang, Reimer-Kirkham and Thorne2017). End-of-life frameworks incorporating a palliative approach, while found to empower nurses and aides (PSWs) in being involved in end-of-life decision-making, have been found to be reduced to checklists (Watts, Reference Watts2011). Additionally, instituting change in highly regulated facilities such as LTC homes add to difficulties because of competing program priorities such as least restraint policies (Ministry of Health and Long-Term Care, 2007). In introducing a palliative approach to rural nurses, Pesut, McLeod, Hole, and Dalhuisen (Reference Pesut, McLeod, Hole and Dalhuisen2012) questioned the appropriateness to expect nurses to incorporate more philosophies in their everyday demanding workload. Participants in our study consistently discussed demands on their time to provide care. Other researchers implementing a palliative approach have noted the importance of facility management to support staff (Brazil et al., Reference Brazil, Brink, Kaasalainen, Kelley and McAiney2012; Sawatzky et al., Reference Sawatzky, Porterfield, Roberts, Lee, Liang, Reimer-Kirkham and Thorne2017; Sims-Gould et al., Reference Sims-Gould, Wiersma, Arseneau, Kelley, Kozak, Habjan and MacLean2010). Indeed, staff alone cannot be responsible to incorporate a philosophy that may require a cultural shift and support from all team members (Sawatzky et al., Reference Sawatzky, Porterfield, Roberts, Lee, Liang, Reimer-Kirkham and Thorne2017).
This study also found that staff used a passive approach when discussing residents’ conditions with family. Participants in our study understood family members’ experiences of grief and loss. Staff, however, was reluctant to engage with emotional family members and potentially provoke conflict. Studies have found that family members have experienced enduring guilt after admitting their relatives to LTC homes (Bern-Klug, Reference Bern-Klug2008; Thompson & Roger, Reference Thompson and Roger2014) and grief at witnessing their relative’s decline (Austin et al., Reference Austin, Goble, Strand, Mitchell, Thompson, Lantz and Vass2009; Bern-Klug, Reference Bern-Klug2008; Caron et al., Reference Caron, Griffith and Arcand2005a). Family members’ emotions have been found to infiltrate into everyday family-staff interactions (Austin et al., Reference Austin, Goble, Strand, Mitchell, Thompson, Lantz and Vass2009). Also, as found in our study, staff have perceived questioning by families as a lack of trust (Austin et al., Reference Austin, Goble, Strand, Mitchell, Thompson, Lantz and Vass2009). Amid these power-laden interactions, there may be missed opportunities to have discussions. Thus, staff and LTC home policy makers need an understanding that discussions require repetition (Bern-Klug, Reference Bern-Klug2008) and that relationships between staff and family members are crucial to decision-making. As family members are mainly concerned with preserving the identity of their relatives (Gladstone et al., Reference Gladstone, Dupuis and Wexler2007), a staff focus on resident and family relationships is important and consistent with the concept of personhood in which the person with dementia’s sense of self (through relationships) is kept at the forefront of care. Further research is needed to examine how social relations of status, gender or ethnicity shape decision-making experiences among residents, family, and staff.
Study Limitations
Data gained from 21 LTC home staff members were sufficient to fully develop themes (Morse, Reference Morse2015). However, a sample consisting of more RNs, male nurses, or staff of varying ethnicities may have provided different results. Another limitation is that participants who volunteered for the study may have had an interest in palliative dementia care and may not include staff who have contrary attitudes. Finally, findings may be applicable only to the LTC homes in which the study was conducted. However, these study findings provide a nuanced understanding of barriers to staff involvement in decision-making and may be transferrable to LTC home residents with or without dementia.
Conclusion
The study findings revealed barriers to LTC home staff involvement in end-of-life discussions for people with dementia. Study findings suggest that LTC home policies and practices need to be adapted to a relational approach to palliative dementia care. The predominant biomedical model in LTC homes, although important, should also include and value a philosophy that emphasizes relationships among residents, family, and staff to include and better meet the needs of people with dementia and their family members.
