This study demonstrates that satisfaction with end-of-life care among HCPs of NH residents with advanced dementia varies and is associated with factors related to communication, health services, and residents’ comfort and medical interventions. Time spent by a care provider discussing advance directives with the HCP at the time of NH admission was the strongest determinant of satisfaction. Greater HCP satisfaction with care was also more likely for residents who experienced less discomfort, resided in a special care dementia unit, and were not tube fed. These findings suggest that there are potentially modifiab2le factors that could be targeted to improve end-of-life care for people with advanced dementia in the NH setting.
The finding that more time spent discussing advance directives with a healthcare provider increased HCP satisfaction with care supports previous research indicating that advance care planning is of primary importance for families of terminally ill patients.6,10
It is possible that the amount of time spent discussing specific directives may be a marker for overall better communication and shared decision-making between HCPs and healthcare professionals. Moreover, greater attention to eliciting care preferences may reduce HCP distress related to entrusting the care of their loved one to NH providers, particularly at the difficult transition point of NH admission.
A second finding, related to healthcare delivery, indicates greater satisfaction of HCPs of residents with advanced dementia who were residing in a special care unit. Although earlier research supports this finding,7,13
the specific component of a unit specializing in dementia care that promotes greater satisfaction is not well understood. Special care units employ professionals with specific training in advanced dementia, who presumably have a focused interest in managing persons with this condition and their families. Thus, it follows that HCPs who perceive that their loved one is receiving services individualized to their specific needs would report a greater satisfaction with care.
Two resident characteristics were related to HCP satisfaction in the current study: physical comfort and tube feeding. Current literature points to adequate and effective pain management at the end of life as a high priority for patients with terminal illnesses and their families,6,11,23
but to the best of the authors’ knowledge, this is first the study to demonstrate a direct relationship between greater comfort of persons with advanced dementia (as ascertained by a nurse) and higher HCP satisfaction with care. It is reasonable to assume that HCPs would be less satisfied with care if their loved ones with advanced dementia were experiencing greater suffering.
Research has shown that feeding tubes have no demonstrable benefits for patients with end-stage dementia, yet the use of this intervention is still common in U.S. NHs.24-28
A prior study showed that, in hindsight, the majority of proxies of tube-fed NH residents with advanced dementia regret their decision to initiate tube feeding.29
Therefore, no prior research has examined the influence of tube feeding on families’ satisfaction with overall care. The current study suggests that the HCPs of tube-fed residents with advanced dementia are less satisfied than HCPs of those without feeding tubes. Further study is needed to determine whether this observation relates to the occurrence of adverse sequelae of tube feeding or inherent characteristics of the HCPs of tube-fed residents that lead to greater dissatisfaction.
This study has limitations that deserve comment. First, the study participants were almost all white. Prior work has shown that racial and ethnic factors are important determinants of end-of-life care in dementia.26
Thus, these findings may not be generalizable to other racial or ethnic backgrounds. Second, detailed information was not available about the advance care planning process or tube feeding decisions. Thus, the specific reasons why less time spent discussing advance directives and tube feeding use were associated with less satisfaction cannot be completely elucidated. Third, HCPs may not have precisely remembered how long they spent discussing advance directives with care providers at the time of NH admission, although the association (i.e., parameter estimate) between the duration of these discussions and satisfaction with care did not change when length of stay was added to the model. Moreover, recall bias is likely to be nondifferential with respect to satisfaction with care. Finally, it was not possible to determine the precise component of a special care dementia unit that confers greater HCP satisfaction.
Because NHs are a major site of palliative care for patients with advanced dementia,5
addressing family satisfaction is crucial to providing high-quality end-of-life care. The current study suggests that more time spent discussing advance directives, improving patient comfort, less use of feeding tubes, and management in special care dementia units are potential areas to target future interventions to improve satisfaction with end-of-life care in advanced dementia.