Meaning-Making and Managing Difficult Feelings: Providing Front-Line End-of-Life Care

Abstract

ABSTRACT. Managing grief and difficult emotions related to end of life (EOL) care is an oftenunder-recognized part of the work of resident care aides (RCAs). In this interpretive analysis we explore the shared and socially constructed ideas that eleven RCAs in one Canadian city employ to make sense of death and the provision of EOL care. RCAs spoke of personal challenges involved in witnessing death and experiencing loss, as well as helplessness and frustration when they could not provide quality EOL care. RCAs invoked "consoling refrains" to manage grief, including "such is life," "they are better off" and "they had a full life." To manage guilt and moral distress, RCAs reminded themselves "I did my best" and "I experience rewards." Though these ideas help RCAs, some may need to be reframed through coaching and mentorship, to prevent unintended negative effects on care or the reproduction of ageist beliefs more broadly.Author's Postprint Copy 3 Population demographics, technology and health care service delivery have been reshaping the nature of older populations in residential care facilities. More residents have chronic life-limiting conditions such as dementia, leading some to suggest that "long-term care facilities will become the hospices of the future" (Abbey, Froggatt, Parker, & Abbey, 2006: p.56). In Canadian residential care facilities, the most substantial portion of direct care is provided by resident care aides (RCAs). As a result of frequent and sustained contact with residents over time, RCAs frequently report developing close, family-like relationships with residents (Moss, Moss, Rubinstein, & Black, 2003;Wilson & Daley, 1998). Though this may help RCAs provide better quality end-of-life (EOL) care (and indeed, may sustain them in their work), it can also be a 'double-edged sword' entailing considerable grief and distress when a resident dies (Ersek & Wilson, 2003;McClement, Wowchuk & Klaasen, 2009).Staff members in residential care settings frequently lack opportunities to grieve resident deaths (Kaaslainen, Brazil, Ploeg & Martin, 2007;Moss et al., 2003) and many desire greater practical and/or emotional support after a death (Hanson, Henderson & Menon, 2002;Katz, Sidell & Komaromy, 2001;Katz, Sidell & Komaromy, 2000;Rickerson, Somers, Allen & Lewis, 2005). Bereavement support in these facilities is often non-existent or poorly resourced, due in part to resource constraints and an inability to recognize staff bereavement needs (Moss, Braunschwieg & Rubinstein, 2002;Katz, Sidell, & Komaromy, 2001). When deaths and relationships are unacknowledged, grief may be disenfranchised, which may have negative effects on personal growth, as documented in one study (Anderson & Gaugler, 2006).In addition to grief, RCAs providing EOL care deal with difficult emotions such as helplessness that can be involved when watching a resident suffer (Goodridge, Bond, Cameron & McKean, 2005;Palan Lopez, 2007). Additionally, RCAs may work in environments with inadequate staffing, lack of supervision, high turnover, lo...

Constituents of effective support for homecare workers providing care to people with dementia at end of life

“…We do not have like a, you know, a person, we do not have like a, what do you call them, a therapist or a counsellor or anything for people to go to. I think any of the office staff here would always listen and lend an ear to the care workers" (P14, male homecare worker, aged between [25][26][27][28][29][30][31][32][33][34][35][36][37][38][39][40]. "I do not think my care company have any support services in place, because when that person dies with dementia, we did not get anything after.…”

“…15,25,27,32 Moreover, work-related stress may be heightened when caring for older people with memory impairment or dementia. 33,34 While family carers of people with dementia may experience high stress levels and exhaustion, 35 little is known about homecare workers' experience of providing care for older people with dementia who are approaching death. Additionally, homecare workers may experience negative emotions when the work environment or other circumstances impede them from giving their best.…”

“…Additionally, homecare workers may experience negative emotions when the work environment or other circumstances impede them from giving their best. 33,34 While family carers of people with dementia may experience high stress levels and exhaustion, 35 little is known about homecare workers' experience of providing care for older people with dementia who are approaching death. 6 Even where homecare agencies offer support to their employees, little research has explored what might be the most effective elements of such support.…”

Expanding the Concept of End‐of‐life Care in Long‐term Care: A Scoping Review Exploring the Role of Healthcare Assistants

“…HCAs detailed the following role‐required behaviours to ensure dying residents experienced dignity and respect: knowing the residents’ care wishes (33%; n = 5) (Beck et al, 2012; Fryer et al, 2016; McClement et al, 2010; Trotta et al, 2018; Wiersma et al, 2019), providing physical care to dying residents with respect and dignity (33%; n = 5) (Holmberg et al, 2019; McClement et al, 2009; Nochomovitz et al, 2010; Schell & Kayser‐Jones, 2007; Waskiewich et al, 2012), identifying changes in residents’ behaviours that may indicate imminent death (26%; n = 4) (Holmberg et al, 2019; McClement et al, 2009; Nochomovitz et al, 2010; Trotta et al, 2018), communicating with dying residents ‘normally’ (20%; n = 3) (Holmberg et al, 2019; Udo et al, 2018; Wiersma et al, 2019), saying goodbye to dying residents (20%; n = 3) (Funk et al, 2014; McClement et al, 2009; Trotta et al, 2018), advocating on behalf of residents (13%; n = 2) (McClement et al, 2009, 2010) and caring for the body with dignity and respect after death (13%; n = 2) (Beck et al, 2012; Holmberg et al, 2019). Several HCAs also described the extra‐role behaviour of ensuring residents do not die alone (33%; n = 5) (Beck et al, 2012; McClement et al, 2009; Trotta et al, 2018; Waskiewich et al, 2012; Wiersma et al, 2019).…”

Changing Focus: End-of-Life Care in a New York State Managed Long-Term Care Program

“…As with research addressing EOL care in long-term care generally, study of the providers’ perspectives has primarily focused on nursing homes, where, as in MLTC programs, the majority of direct care is provided by nonlicensed personnel, certified nursing assistants (CNAs) in the nursing home setting and home health aides (HHAs) in community-based long-term care. Aides provide the majority of direct care to dying residents, encounter dying more intimately, suffer greater sense of loss of a dying resident, and experience moral distress over inadequate care (Boerner, Burack, Jopp, & Mock, 2015; Funk, Waskiewich, & Stajduhar, 2013). Yet, aides have the least amount of education and are at risk for being both informationally and emotionally unprepared for resident death (Van Riesenbeck, Boerner, Barooah, & Burack, 2015).…”