Physical and Psychological Distress Are Related to Dying Peacefully in Residents With Dementia in Long-Term Care Facilities

Roo, Maaike L. De; Albers, Gwenda; Deliëns, Luc; Vet, Henrica C.W. de; Francké, Anneke L.; Noortgate, Nele Van Den; Block, Lieve Van den; Groote, Zeger De; Brearley, Sarah; Caraceni, Augusto; Cohen, Joachim; Harding, Richard; Higginson, Irene J; Kaasa, Stein; Linden, Karen; Miccinesi, Guido; Pardon, Koen; Pasman, Roeline; Pautex, Sophie; Payne, Sheila; LucDeliens,

doi:10.1016/j.jpainsymman.2015.02.024

Cited by 14 publications

(9 citation statements)

References 23 publications

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“…The absence of such discussions left staff and families to rely on their own knowledge of residents’ end-of-life care preferences rather than making an informed decision based on the resident’s expressed wishes (Cartwright et al, 2009; Hanson et al, 2002). Although this approach seemingly allowed staff and families to protect residents from the ambivalence and uncertainty they may have felt discussing their own death, it also led to unexpressed views and wishes about end-of-life comfort (Bollig et al, 2016; Goodman et al, 2013) and left families with the burden of making inferences and decisions about what their relatives may find comforting (Bollig et al, 2016; De Roo et al, 2015; van Soest-Poortvliet et al, 2015).…”

Section: Discussion: Broadening the Purview Of Comfort To Improve Palmentioning

confidence: 99%

“…Challenges noted include complexities related to unpredictable dying trajectories, lack of palliative care knowledge or skills among staff, workload demands, and apprehensiveness in talking about dying (Brazil et al, 2004;Johnson & Bott, 2016;Parker Oliver, Porock, & Oliver, 2006;Seymour, Kumar, & Froggatt, 2011;Sims-Gould et al, 2010). Yet much of the empirical work and subsequent practice recommendations to date have been based on staff perceptions and experiences (Brazil, et al, 2004;Cartwright, Miller, & Volpin 2009;Reynolds, Henderson, Schulman, & Hanson, 2002;Johnson & Bott, 2016;Kaasalainen, Brazil, Ploeg, & Martin, 2007;Parker Oliver et al, 2006;Seymour et al, 2011;Sims-Gould et al, 2010;Waldrop & Kirkendall, 2009) with far fewer studies exploring the perspectives of families (Glass, 2016;De Roo et al, 2015;van Soest-Poortvliet et al, 2015;Waldrop & Kusmaul, 2011) and residents (Mathie et al, 2011;Ng, Cheong, Raj, Teo, & Leong, 2016;Goodman et al, 2013;Bollig et al, 2016). This gap is most notable in Canada where only one study could be located that captures residents' and families' views -alongside those of staff in LTC -on death, dying, and end-of-life care (Cable-Williams & Wilson, 2014).…”

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confidence: 99%

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Broadening End-of-Life Comfort to Improve Palliative Care Practices in Long Term Care

et al. 2017

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RÉSUMÉCette étude qualitative canadienne rapporte les résultats de 19 groupes de discussion comprenant 117 participants, incluant des bénéficiaires, des familles et des membres du personnel. Elle avait pour objectifs : 1) d’explorer les soins palliatifs offerts en soins de longue durée (SLD) en vue de faire face aux tensions associées à la prestation de soins aux personnes qui sont encore bien vivantes et celles en fin de vie dans une même communauté de soins et 2) d’identifier des améliorations qui pourraient être apportées aux pratiques en soins palliatifs afin de mieux répondre aux besoins de tous les bénéficiaires en vie ou mourants dans les établissements de SLD, ainsi que celles des familles et du personnel qui leur apportent du soutien. Notre étude a montré que les perspectives liées au confort en fin de vie du personnel en SLD, celles des bénéficiaires et de leurs familles étaient appliquaient à ceux qui se trouvaient en fin de vie ou aux familles qui les soutenaient. Cette compréhension du confort limitait l’intégration des principes de soins palliatifs lors des derniers jours de vie des bénéficiaires. Les résultats de notre étude ont aussi suggéré que le fait de recueillir les perceptions des bénéficiaires liées au confort en fin de vie, de partager l’information à propos de la mort d’un bénéficiaire d’une manière plus personnelle, et de s’assurer que les bénéficiaires, leurs familles et le personnel aient des occasions de participer dans les soins de confort pour les bénéficiaires mourants pouvaient accroître le confort en fin de vie et soutenir une plus grande intégration des principes de soins palliatifs en SLD.

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Section: Discussion: Broadening the Purview Of Comfort To Improve Palmentioning

confidence: 99%

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confidence: 99%

Broadening End-of-Life Comfort to Improve Palliative Care Practices in Long Term Care

et al. 2017

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“…In fact, when caregivers perceive residents to have died a good death, their sense of overall distress and risk of complicated grief are significantly reduced (Boerner and Schulz, 2009; Chiu et al, 2010). Unfortunately, such positive perceptions of resident deaths are rare in LTC (De Roo et al, 2014, 2015; Bolt et al, 2019).…”

Section: Introductionmentioning

confidence: 99%

The relationship between caregivers’ perceptions of end-of-life care in long-term care and a good resident death

et al. 2020

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Objective Quality end-of-life (EOL) care is critical for dying residents and their family/friend caregivers. While best practices to support resident comfort at EOL in long-term care (LTC) homes are emerging, research rarely explores if and how the type of care received at EOL may contribute to caregivers’ perceptions of a good death. To address this gap, this study explored how care practices at EOL contributed to caregivers’ perceptions of a good resident death. Method This study used a retrospective cross-sectional survey design. Seventy-eight participants whose relative or friend died in one of five LTC homes in Canada completed self-administered questionnaires on their perceptions of EOL care and perceptions of a good resident death. Results Overall, caregivers reported positive experiences with EOL care and perceived residents to have died a good death. However, communication regarding what to expect in the final days of life and attention to spiritual issues were often missing components of care. Further, when explored alongside direct resident care, family support, and rooming conditions, staff communication was the only aspect of EOL care significantly associated with caregivers’ perceptions of a good resident death. Significance of results The findings of this study suggest that the critical role staff in LTC play in supporting caregivers’ perceptions of a good resident death. By keeping caregivers informed about expectations at the very end of life, staff can enhance caregivers’ perceptions of a good resident death. Further, by addressing spiritual issues staff may improve caregivers’ perceptions that residents were at peace when they died.

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“…Secondly, research shows the need for palliative care development in nursing homes [31]. Residents of nursing homes tend to be burdened with a vast number of symptoms, are often transferred to hospitals and are not consulted with regard to their end-of-life care preferences [282932333435].…”

Section: Case Under Analysismentioning

confidence: 99%

Integrated Palliative Care for Nursing Home Residents: Exploring the Challenges in the Collaboration between Nursing Homes, Home Care and Hospitals

Hermans¹,

Sevenants²,

Declercq³

et al. 2019

International Journal of Integrated Care

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Introduction: Nursing home residents are a vulnerable and frail segment of the population, characterised by their complex and palliative care needs. To ensure an integrated approach to palliative care for this target group, working on a collaborative basis with multiple providers across organisational boundaries is necessary. Considering that coordinators of palliative networks support and coordinate collaboration, the research question is: ‘how do network coordinators perceive the process of collaboration between organisations in Flemish palliative networks?’ Methods: A dual-phase sequential mixed-methods design was applied. First, the coordinators of each of the fifteen palliative networks in Flanders completed a survey in which they evaluated ten aspects of collaboration for two types of cooperation: between nursing homes and home care, and between nursing homes and hospitals. Next, the survey results thus obtained were discussed to improve understanding in a focus group composed of the above coordinators, and which was analysed on the basis of content analysis. Results: In both forms of cooperation, the ‘formalisation’ and ‘governance’ were the aspects that yielded the lowest mean scores. The coordinators in the focus group expressed a need for more formalised interaction among organisations with regard to palliative care, the establishment of formal channels of communication and the exchange of information, as well as the development of shared leadership. Conclusions: The perspectives of the coordinators on inter-organisational collaboration are a valuable starting point for interventions directed at the stronger integration of palliative care for residents of long term-care facilities.

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Physical and Psychological Distress Are Related to Dying Peacefully in Residents With Dementia in Long-Term Care Facilities

Cited by 14 publications

References 23 publications

Broadening End-of-Life Comfort to Improve Palliative Care Practices in Long Term Care

Broadening End-of-Life Comfort to Improve Palliative Care Practices in Long Term Care

The relationship between caregivers’ perceptions of end-of-life care in long-term care and a good resident death

Integrated Palliative Care for Nursing Home Residents: Exploring the Challenges in the Collaboration between Nursing Homes, Home Care and Hospitals

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