Knowledge Gap for Practicing Clinicians: Nutrition and Hydration at the End of Life
Authors: Heuberger Roschelle , Wong Helen Loi 
Published: November 2023

Objective

The objective of this study was to assess the knowledge, attitudes and beliefs of practicing dietitians regarding nutrition and hydration at the end of life using a mixed‐methods approach.

Introduction

End of Life (EOL) decisions regarding nutrition and hydration are often made in a chaotic and emotionally charged environment. A myriad of factors influence care, including level of knowledge; legal documentation, religious beliefs and social norms. A body of evidence does not exist for Artificial Nutrition and Hydration (ANH) or Voluntary Refusal of Food and Fluids (VRFF) in EOL care with respect to dietitians' knowledge, attitudes and beliefs (KABs) regarding quality of life, survival time, or other measures of importance.

Methods

A survey was developed, refined and validated through three sequential expert focus groups at Central Michigan University (CMU) and delivered using Survey Monkey™ to the membership of the Academy of Nutrition and Dietetics (AND). The research was deemed exempt (Federal Statute #2) by the Intuitional Review Board at CMU and approved by AND in accordance with Principles of the Declaration of Helsinki. Respondent identifying information was not collected. The survey employed open ended questions, Likert scales and binary nominal variables. Descriptive statistics, correlations, non‐parametrics and regressions were run in SPSS® v. 21. Multiple comparisons were adjusted post‐hoc. Qualitative data were analyzed using Nvivo® v. 11.

Results

Survey respondents (n=1029) represented a 9% response rate to email blasts. Demographics included age (μ = 44.5 ± 14), 97.9% female, 90.2% Caucasian, 54.7% Protestant, 51.6% Bachelor's trained and <3% employed in Hospice, Palliative Care. When provided with specific scenarios regarding ANH in end stage dementia, 88.7% responded “Not sure” as to how to evaluate institution or outcomes. In specific scenarios of end stage cancer (gnosis) and VRFF, 76.6% of respondents were unsure of the implications of palliative sedation plus dehydration or “doctrine of double effect”. Age (p <0.001), educational attainment (p <0.026) and institutional culture (p < 0.016) were related to RDs' perceptions of patient self‐determination and competence. Significant associations existed between demographics, practice settings, organizational culture and clinicians' KABs regarding ANH in advanced dementia; VRFF in gnosis; and their personal feelings of adequacy in patient advocacy, discussion of death, and handling of difficult, controversial or ethically ambiguous issues.

Conclusions

There are knowledge gaps for practicing clinicians regarding nutrition and hydration in EOL care. Significant associations were found between respondent demographics, practice characteristics and KABs. This survey indicated limited knowledge of such issues as survival time in palliative sedation plus dehydration or quality of life in end stage dementia with institution of ANH in our sample. This presents an educational opportunity in an important, but under‐addressed arena. Educational initiatives and further research are required to improve patient care.

Support or Funding Information

Internal funding from Central Michigan University was obtained. The award was granted to the primary investigator for a call for proposals from the Office of Research and Sponsored Programs. Central Michigan University FRCE Type B grant, #48855 201314.