Improving Decision-Making for Feeding Options in Advanced Dementia: A Randomized, Controlled Trial

Abstract

Background Feeding problems are common in dementia, and decision-makers have limited understanding of treatment options. Objectives To test whether a decision aid improves quality of decision-making about feeding options in advanced dementia. Design Cluster randomized controlled trial. Setting 24 nursing homes in North Carolina Participants Residents with advanced dementia and feeding problems and their surrogates. Intervention Intervention surrogates received an audio or print decision aid on feeding options in advanced dementia. Controls received usual care. Measurements Primary outcome was the Decisional Conflict Scale (range 1–5) measured at 3 months; other main outcomes were surrogate knowledge, frequency of communication with providers, and feeding treatment use. Results 256 residents and surrogate decision-makers were recruited. Residents’ average age was 85; 67% were Caucasian and 79% were women. Surrogates’ average age was 59; 67% were Caucasian, and 70% were residents’ children. The intervention improved knowledge scores (16.8 vs 15.1, p<0.001). After 3 months, intervention surrogates had lower Decisional Conflict Scale scores than controls (1.65 vs. 1.90, p<0.001) and more often discussed feeding options with a health care provider (46% vs. 33%, p=0.04). Residents in the intervention group were more likely to receive a dysphagia diet (89% vs.76%, p=0.04), and showed a trend toward increased staff eating assistance (20% vs.10%, p=0.08). Tube feeding was rare in both groups even after 9 months (1 intervention vs. 3 control, p=0.34). Limitations Cluster randomization was necessary to avoid contamination, but limits blinding and may introduce bias by site effect. Conclusion A decision aid about feeding options in advanced dementia reduced decisional conflict for surrogates and increased their knowledge and communication about feeding options with providers.

Patient-centered Treatment Decisions for Urethral Stricture: Conjoint Analysis Improves Surgical Decision-making

“…[23][24][25][26][27][28] Although conjoint analysis has thus far been used as an analytical technique to determine treatment preferences, our results offer a potential new use for conjoint analysis as a practical decision support mechanism. As much as patients are helped by the process of defining their values and goals, if this information can then be provided to the physician caring for these patients, physicians can gain a better understanding of patient goals and hopefully better orient their discussion and treatment options toward individual patients' values.…”

Shared Decision Making in Residential Aged Care: A Framework Synthesis

“…Staff as reported in Sims-Gould et al study [36] perceived that evidence based practice should take precedence over resident choice, while staff in Werner's study [42] expressed moral and ethical issues about utilising evidence that is known to abrogate resident autonomy. In another study by Hanson et al [40], there is no knowledge of staff opinions of a bottom up approach to utilising evidence.…”

“…Evidence is utilised in SDM to ensure that patients understand all the risks and benefits of associated care and treatment (informed consent) and to help them reach a decision based on their preferences [48] [40], where families were provided with evidence of treatment risks and benefits increased family members knowledge and facilitated SDM with staff. Staff as reported in Sims-Gould et al study [36] perceived that evidence based practice should take precedence over resident choice, while staff in Werner's study [42] expressed moral and ethical issues about utilising evidence that is known to abrogate resident autonomy.…”

Research Priorities for Geriatric Palliative Care: Goals, Values, and Preferences

“…[49][50][51][52] Only one randomized trial tested a decision aid for surrogates, developed to provide decision support in nursing homes for the choice between tube feeding and assisted feeding in advanced dementia. 53 This decision aid reduced increased knowledge, reduced conflict, and increased frequency of communication with health care providers. 54 Other interventions have been effective at changing provider behavior.…”

“…53 This decision aid reduced increased knowledge, reduced conflict, and increased frequency of communication with health care providers. 54 Other interventions have been effective at changing provider behavior. Using highly structured and interactive educational methods, providers can learn new communication skills, and this training changes patient care.…”