To our knowledge, this is the first study to prospectively examine decision-making among HCPs of NH patients with advanced dementia. Of 323 HCPs in our cohort, 123 (38.1%) recalled having made at least one medical decision over the 18-month follow-up period, of which the most frequently encountered involved the treatment of eating and drinking problems, infections and pain. Satisfaction with decision-making was generally high, although there was relatively greater satisfaction with the decision itself, compared to the decision-making process. Specifically, HCPs were least satisfied with the perceived level of involvement of NH primary care providers in the shared decision-making process. Modifiable factors associated with higher levels of overall decision satisfaction included the resident living on a special care dementia unit and greater resident comfort. Our finding that children of NH residents with advanced dementia were relatively less satisfied with decision-making may be helpful for NH providers to target those in need of greater decision-making support.
Our work supports prior research demonstrating that feeding problems, infectious episodes and pain are common clinical complications in dementia,19–22
but furthers this earlier work by showing that these problems are not only burdensome to the resident, but also to their HCPs in terms of decision-making. Advance care planning is a key process in choosing care at the end-of-life. Prior research has shown that families of dementia patients often feel unprepared about what to expect at the end of life.23
Thus, an understanding of the most common types of decisions likely to arise in end-stage dementia provides an opportunity for HCPs and patients with early disease to prepare for the difficult choices they will face, and for them to consider their preferences for care in advance.
Despite the inherent challenges involved in surrogate decision-making for persons with advanced dementia, HCPs in our study reported relatively high levels of overall decision satisfaction. Satisfaction with the process of decision-making was significantly lower than satisfaction with the decision itself, most notably due to dissatisfaction with the level of perceived involvement by NH primary care providers. Decision-making support from health care professionals is a key component of quality end-of-life care.24,5
Unfortunately, prior research has shown that families often feel that this support is inadequate, particularly in the NH setting.6, 23, 25, 26
As such, our findings further support the notion that greater communication, provision of information, reassurance and support by NH providers to HCPs during times of decision-making offers an opportunity to improve overall end-of-life care in the NH setting.
In this study, the strongest predictors of satisfaction with decision-making were the resident living on a special care dementia unit and higher levels of resident comfort. It is reasonable to assume that HCPs will be more comfortable with their decisions when their loved ones experience less suffering. The reason why satisfaction with decision-making was higher on these units cannot be determined from our study. However, prior research in advanced dementia has shown that HCP overall satisfaction with end-of-life care and residents’ symptom control are better on special care dementia units compared to general NH units.27, 28
Finally, we found that HCPs who were children of residents were less satisfied with decision-making compared to other surrogates. Prior work has shown that HCPs who are children are also less likely to forgo hospitalizations for NH residents with advanced dementia.29
Taken together, these findings suggest that children may derive particular benefit from counseling by health care professionals when faced with treatment decisions for their parents with end-stage dementia.
The results of this study should be interpreted in light of certain limitations. Although data were collected from multiple NHs, the fact that the HCPs and residents were mostly white, predominantly women, and all lived in the Boston area, may limit the generalizability of our findings. In this study, we relied on HCP self-report of medical decisions, which introduces the possibility of recall bias; it is possible that HCPs did not recall some decisions in which they participated in, or their recall may have been affected by the outcome of the decision, which was not examined in this analysis. It is also possible that HCPs were not contacted by NH providers to discuss all the treatment decision opportunities that arose during the residents’ course.
Surrogate decision-making is challenging in advanced dementia. The findings of this study offer some approaches that may alleviate this burden. Knowing which decisions are most likely to arise during the end-stage of the disease could ease decision-making by allowing the surrogate to anticipate their choices and by providing the opportunity for advance care planning. Our findings further underscore that providing adequate decision support is a critical means by which NH providers can help minimize the challenge of decision-making for proxies. Further, care directed towards maximizing resident comfort may ease the decision-making burden experienced by surrogates. Finally, additional research is needed to elucidate the mechanisms by which specialized dementia care units promote greater decision-making satisfaction, and thus, to identify strategies to disseminate their success to other NH settings.