Perceptions of Home Health Nurses Regarding Suffering, Artificial Nutrition, and Hydration in Late-Stage Dementia

Abstract

The purpose of this study was to explore perceptions of home healthcare nurses related to suffering, artificial nutrition and hydration in people with late-stage dementia, and if these perceptions influence care to people with dementia and their families. Part of a mixed-methods study, the qualitative portion examined perceptions of home healthcare nurses in a rural area in the southern United States. Seventeen home healthcare nurses participated in this study. Semistructured focus group interview questions were used. Constant comparative analysis was the method used for coding transcripts. Three themes emerged from the analysis: patient/family comfort, futility, and symbols of suffering. Although many of the nurses reported that artificial nutrition and hydration was of comfort to the patient and family because of the potential for "starving," they also felt it prolonged the patient's suffering due to the invasive procedure, need for restraints, and possibility of fluid overload. Several nurses felt that artificial nutrition and hydration gave a sense of false hope to the family that the patient would live longer. The perceptions of these home healthcare nurses influence their care to people with dementia and their families related to artificial nutrition and hydration, possibly based on experience. Their perceptions could influence family decisions regarding treatment options. Further research and education with home healthcare nurses is vital to ensure nurses are appropriately caring for patients with dementia and their families.

Tube Feeding in Individuals with Advanced Dementia: A Review of Its Burdens and Perceived Benefits

“…Also, fluid overload complication resulting in pulmonary oedema and swelling of extremities is another trouble that can occur from tube feeding [50]. A survey study of home healthcare nurses in United States that explored their perceptions regarding suffering, artificial nutrition, and hydration in advanced dementia reports that artificial nutrition and hydration prolonged patients' suffering due to burden of the procedure, the need for restraints, and increase chances of developing fluid overload complications [70]. Other studies also report significant higher risk of in-hospital mortality after PEG placement [71][72][73].…”

“…In addition to maintaining the nutritional needs of individuals with advanced dementia experiencing eating problems, feeding tube provides a reliable route for administration of essential medications [52,94]. Studies also reveal that majority of family members and caregivers of PEG-fed individuals with advanced dementia express psychological relief [70] and report being satisfied with the quality of life of patients [52]. Quite considerably also, the associated mortality relating to direct PEG procedure is low (1-2%), and complications are trivial [90].…”

Mapping and understanding the decision-making process for providing nutrition and hydration to people living with dementia: a systematic review

“…ANH was generally viewed as a medical intervention that could unnecessarily prolong the person's life [24,32,41,48,57]. However, some family caregivers and practitioners considered it constituted basic human care and could not be forgone [27,39,55].…”

“…Views of ANH being part of basic human care were usually derived from social, religious, racial and professional values of sanctity of life among the caregivers and healthcare practitioners [27,30,35,37,39,53,55] especially in some cultures. For example, in Israel, Japan and USA, ANH provided hope and psychosocial benefits to the patient's family [50,53,57].…”

“…If previous stated directives were absent or unreliable, family caregivers and practitioners mostly relied on the person's presumed wishes [32,35,45,47] and interpretations of their current behaviors to maintain their autonomy [25,40,43,48,49]. Interpretation of the persons' behaviors such as facial expressions and appearing to 'decline' food, varied among family caregivers and practitioners, and was challenging to understand [25,46,57,68]. When the person's preferences were unclear, the values of family caregivers and social norms would override the decisions [39,43,47,50,53].…”