Objectives: Many factors affect the decision to institute long-term tube-feeding in older persons. The objectives of this cross-national survey are to examine the tube-feeding decision-making process for cognitively impaired older persons from the perspective of the substitute decision-makers (SDM) and to contrast this process in US and Canadian healthcare settings.
Design: Survey.
Setting: Chronic care facilities in Ottawa and nursing homes in Boston.
Participants: Patients more than age 65 who were tube-fed for at least 2 months and who were unable to make their own healthcare decisions at the time of tube placement were identified at both sites. The SDMs of 46 patients in Ottawa and 48 patients in Boston were surveyed.
Measurements: The survey asked questions relating to the following categories: health status of the patient, advance directives, communication with the healthcare team, perceived goals of tube-feeding, decision satisfaction, and sociodemographic data.
Results: Tube-fed patients in Boston were more likely to have a diagnosis of dementia than those in Ottawa (60.4% vs 10.9%, P < .001) and were less likely to have had an acute neurological event (35.4% vs 71.7%, P < .001). There was a greater likelihood in Boston than in Ottawa (68.7% vs 6.5%, P < .001) for tube-feeding decisions to be made in a nursing home (vs an acute hospital). In the combined cohort, 19.1% of patients had a living will, and only 47.9% of SDMs felt confident that the patients would want to have a feeding tube. The majority of SDMs at both sites felt they understood the benefits (83.0%), but not the risks (48.9%), of tube-feeding. The most commonly perceived reasons for tube-feeding were to "prolong life" (84.0%) and to "prevent aspiration" (67.0%). Approximately half of all SDMs felt they had received adequate support from the healthcare team. A minority of SDMs (38.3%) at both sites stated that they would want a feeding tube for themselves, and only 40% of SDMs felt the feeding tube had improved the patients' quality of life.
Conclusions: A greater proportion of patients have feedings tubes inserted because of a degenerative dementia in Boston compared with an acute neurological event in Ottawa. Despite the difference in diagnostic indication for tube-feeding, the substitute decision-making process was seriously limited at both sites by poor implementation of the principle of substituted judgement, a need for broader advance directives, and improved transfer of knowledge between clinicians and decision-makers.