Surrogates’ end‐of‐life decision‐making process in nursing homes for residents with a neurocognitive disorder: An integrative review

Abstract

Objective:The goal of this review is to analyse articles on the experience of surrogates who find themselves making end-of-life decisions for a relative with a major neurocognitive disorder in a nursing home.Design: An integrative review of the literature based on Whittemore and Knafl's method.Data sources: This review used the CINAHL, PubMed, PsycInfo, Embase and Web of Science databases. A complementary search was also conducted via citation pearl searching, and the reference lists from the selected articles were manually verified. Review method:The quality of the selected articles was assessed using the Crow Critical Appraisal Tool, and the data were extracted systematically and were then organised according to Mishel's uncertainty in illness theory. The data that did not correspond to any concept of the theory were excluded at this stage. Analysis was conducted using the method put forward by Miles, Huberman and Saldaña.Results: A total of 18 articles were selected: 11 qualitative, 5 quantitative and 1 using a mixed method, as well as 1 ethical argument. The subjects arising from the analysis of the articles were the types of decisions made, the support available for the surrogates, the role and involvement of the surrogates in the process and the factors that influence the decisions. Conclusion: The results of this integrative review stimulate reflection on the needs of family members involved in making decisions, as well as on the nursing practice and research. Published literature is mainly from North America, and thus, more research is needed to better understand the impact of cultural and ethnic differences in the process, which was poorly covered by the existing literature. Also, exploring nurses' involvement in supporting surrogates may eventually better equip nurses for their interventions with surrogates. Implications for practice: Describing the illness progression and the signification of palliative care to the resident with a NCD and their surrogate decision makers, as well as discussing end-of-life care preferences as early as possible are all nursing 2 of 15 |

Communicating With Nursing Home Residents About End of Life

“…8 Family members may miss these signs 27,32 and NH providers who, as this study found, may have limited contact with residents may miss subtle signs. 21 An alternative approach for clinicians is asking themselves the surprise question, would you be surprised if this patient died in the next 12 months? 33,34 Researchers suggest that providers' negative response to the surprise question, in line with the resident's current health, projected disease trajectory, age (≥85 years), chronic disease exacerbations, and hospitalizations 35 may incentivize timelier end-of-life discussions with referrals to palliative and hospice care services.…”

“…6,7,10,13,17 Family members also may be unwilling to discuss EOL, a sensitive topic, with their NH relative or providers. 7,10,15,[18][19][20] Their uncertainties about their NH relative's health, 16,21 and end-of-life preferences, 6 can result in treatments less desired by the resident, 12,17 and intrafamily conflicts. 17,21 Research indicates that end-of-life conversations with NH residents and their family members about treatment alternatives can increase family satisfaction with the care that their relative receives at EOL 11 and that the received care is synonymous with the resident's wishes.…”

“…7,10,15,[18][19][20] Their uncertainties about their NH relative's health, 16,21 and end-of-life preferences, 6 can result in treatments less desired by the resident, 12,17 and intrafamily conflicts. 17,21 Research indicates that end-of-life conversations with NH residents and their family members about treatment alternatives can increase family satisfaction with the care that their relative receives at EOL 11 and that the received care is synonymous with the resident's wishes. 22 Fewer studies, however, focus on the residents' views about these conversations, 23 including what provider and staff actions would encourage them to initiate conversations about their end-of-life.…”

What will happen to my mom? A grounded theory on nurses’ support of relatives’ end-of-life decision-making process for residents living with dementia in long-term care homes

“…The interviews, which lasted an average of 47 min, were audio-recorded and then transcribed. The first version of the interview guide was developed based on a literature review previously conducted on the subject ( Daneau et al, 2020 ). One version of the guide was designed for nurses and another for relatives.…”

“…This responsibility is sometimes complicated for relatives, especially when the decisions to be made may influence the resident’s end-of-life ( Gjerberg et al, 2015 ). These decisions include, but are not limited to, cardiopulmonary resuscitation, level of care, antibiotic administration, symptom investigation, and artificial nutrition or hydration ( Daneau et al, 2020 ). Relatives rely on the healthcare team, including nurses, to initiate end-of-life conversations and guide them in the decision-making process, but nurses are sometimes uncomfortable in this role ( Livingston et al, 2012 ).…”