Ruth Palan Lopez

The Influence of Nursing Home Culture on the Use of Feeding Tubes

BACKGROUND Nationwide, many nursing home (NH) residents with advanced cognitive impairment are tube fed, despite no demonstrable benefits of this intervention in this population. Studies suggest that organizational features of NHs are associated with this practice, but underlying reasons for these associations are poorly understood. METHODS We conducted a focused ethnographic study of 2 NHs in South Carolina, 1 with a high tube-feeding rate (41.8%) in patients with advanced dementia, and 1 with a low rate (10.7%). Data were collected about physical environment, mealtime and decision-making processes, and explicit and implicit values using 80 hours of direct observation, semistructured interviews with 30 key facility personnel, and abstraction of publicly available material describing the facilities. Data were analyzed using qualitative methods. RESULTS Striking variations in organizational culture were identified. The low-use NH had a homelike environment centered on food as an important component of daily life, mealtimes staffed with knowledgeable nursing assistants who valued hand feeding, and advance care planning that included family and palliative care options. In contrast, the high-use NH had an institutionlike environment, poorly staffed mealtimes, and staff attitudes favoring feeding tubes to avoid aspiration and to meet perceived regulatory compliance. CONCLUSIONS The NH culture influences the approach to feeding in advanced cognitive impairment, whether by hand or placement of a feeding tube. Key features of NHs with a low rate of tube-feeding use include a physical environment that promotes the enjoyment of food, administrative support, and empowerment of staff to value hand feeding and shared decision-making processes involving family members.

Sources of Stress for Family Members of Nursing Home Residents with Advanced Dementia

The sources of stress for families of nursing home (NH) residents with advanced dementia have not been well described. Semistructured interviews were conducted with 16 family members previously enrolled in the Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life study, a prospective cohort of 323 NH residents with advanced dementia and their family members. Questions were asked pertaining to the experience of having a family member in the NH, communication with health-care professionals, surrogate decision making, emotional distress, and recommendations for improvement in care. Transcripts were analyzed using the constant comparative method. The majority of the participants were women (63%), children of the resident (94%), and white (94%). The average age was 62 years. Four themes emerged: (1) inadequate resident personal care, resulting in family member vigilance and participation in care; (2) stress at the time of NH admission; (3) lack of communication with NH physicians; and (4) challenges of surrogate decision making, including the need for education to support advance care planning and end-of-life decisions. Our results support the provision of emotional support to families upon resident admission, education regarding prognosis to guide decision making, improved resident care, and greater communication with health care professionals.

Uncertainty and Decision Making for Residents with Dementia

Uncertainty is a significant barrier confronting surrogate decision makers (SDMs) who make treatment decisions for nursing home (NH) residents with dementia. The study purpose is to describe uncertainty among SDMs of NH residents with dementia and to identify factors associated with greater Uncertainty. We employed a nonexperimental, cross-sectional design using mailed survey and recruited 155 SDM participants from eight NHs in New England. The survey contained the Mishel Uncertainty in Illness Scale For Family Members. Independent variables included resident and SDM sociodemographic characteristics, Advance Directives, Credible Authority, Social Support, and Perceived Self-Efficacy for Surrogate Decision Making. Results of a simultaneous multiple regression analysis identified Perceived Self-Efficacy, Social Support, and Close Relative explained 22% of the Uncertainty variance. These findings suggest that close family relatives who serve as SDMs for NH residents with dementia may benefit from increasing social support and enhancing SDMs’ self-efficacy for decision making.

Family Satisfaction With Care Provided by Nurse Practitioners to Nursing Home Residents With Dementia at the End of Life

The purpose of this study was to examine family satisfaction with care provided by nurse practitioners (NP) to nursing home (NH) residents with dementia. A survey was mailed to 239 family members of nursing home residents who died with dementia. One open-ended question was added to provide comment about the care provided by the NP. A total of 131 surveys were returned (response rate 55%). The study revealed that 98% of family members agreed that they were satisfied with the end-of-life care provided by the NP. Survey responses were used to analyze the associations of communication, comfort, and satisfaction with NPs to total satisfaction with end-of-life care. Pearson’s correlations demonstrated that overall satisfaction was significantly associated with NP–family communication, resident comfort, and satisfaction with NP care. Findings suggested that NPs using a model of care that emphasizes advance care planning, communication, and comfort results in high satisfaction of family members.

What is family-centered care for nursing home residents with advanced dementia?

To understand family members’ perspectives on person- and family-centered end-of-life care provided to nursing home (NH) residents with advanced dementia, we conducted a qualitative follow-up interview with 16 respondents who had participated in an earlier prospective study, Choices, Attitudes, and Strategies for Care of Advance Dementia at End of Life (CASCADE). Family members of NH residents (N = 16) with advanced dementia participated in semistructured qualitative interviews that inquired about overall NH experience, communication, surrogate decision making, emotional reaction, and recommendations for improvement. Analysis identified 5 areas considered important by family members: (1) providing basic care; (2) ensuring safety and security; (3) creating a sense of belonging and attachment; (4) fostering self-esteem and self-efficacy; and (5) coming to terms with the experience. These themes can provide a framework for creating and testing strategies to meet the goal of person- and family-centered care.

Time travel: the lived experience of providing feeding assistance to a family member with dementia.

A major concern facing family members of people with advanced dementia is deciding how to provide food and water. Nurses play a significant role in supporting mealtimes, yet little is known about the meaning of mealtime for family caregivers of people with dementia. The purpose of this phenomenological study was to explore the experience of providing feeding assistance to a family member with dementia from the perspective of community and nursing home family caregivers. Data were collected through in-depth interviews with 16 family caregivers of individuals with advanced dementia. Analysis revealed that the experience was likened to living in a time warp whereby family caregivers were propelled from pleasant memories of the past, to the stark reality of the present, to a foreboding and uncertain future. Findings can guide nurses to dialogue with family members and to ensure that the full spectrum of mealtime is preserved.

Interprofessional Teamwork and Collaboration Between Community Health Workers and Healthcare Teams An Integrative Review

Objectives: Community Health Workers (CHWs) serve as a means of improving outcomes for underserved populations. However, their relationship within health care teams is not well studied. The purpose of this integrative review was to examine published research reports that demonstrated positive health outcomes as a result of CHW intervention to identify interprofessional teamwork and collaboration between CHWs and health care teams. Methods: A total of 47 studies spanning 33 years were reviewed using an integrative literature review methodology for evidence to support the following assumptions of effective interprofessional teamwork between CHWs and health care teams: (1) shared understanding of roles, norms, values, and goals of the team; (2) egalitarianism; (3) cooperation; (4) interdependence; and(5) synergy. Results: Of the 47 studies, 12 reported at least one assumption of effective interprofessional teamwork. Four studies demonstrated all 5 assumptions of interprofessional teamwork. Conclusions: Four studies identified in this integrative review serve as exemplars for effective interprofessional teamwork between CHWs and health care teams. Further study is needed to describe the nature of interprofessional teamwork and collaboration in relation to patient health outcomes.

Nursing's role in leading palliative care: A call to action

Palliative care aims to alleviate the suffering of patients with life-limiting illness while promoting their quality of life. In this call to action commentary, we review the ways in which nursing care and palliative care align, describe barriers to nurses engaging in palliative care, and provide specific recommendations for nurses involved in education, training, and administration to assist nurses at all levels of practice to engage in palliative care for their patients.