A family’s understanding of dementia as “a disease you can die from” assessed shortly after a patient’s admission independently predicted higher comfort in Dutch nursing home patients dying with dementia, including those with less advanced dementia. To our knowledge, this is the first prospective study that suggests that an early basic understanding of dementia as a terminal disease may be prerequisite to providing comfort at the end of life. Even though some die with, rather than directly from, the dementia, such understanding seems rational because dementia shortens life, and death is difficult to predict [11, 30]. Further, many patients never progress to advanced dementia, but we found similar causes of death for less advanced dementia.
The difference in adjusted EOLD-CAD-means of “completely disagree” versus “completely agree” of nearly 4 (−3.6) points (effect size 0.6), could imply that the dying family member had observed, for example, pain and shortness of breath “a lot” versus “not at all.” Only about half (43%) of families agreed that dementia is a disease you can die from, whereas 94% of physicians did. There were indications that patients were less comfortable when treated by physicians who disagreed. We examined mechanisms whereby the combined perceptions of families and physicians, driven mostly by the larger variability in the families’ perception, translated into higher patient comfort and found that this was mediated by higher quality of end-of-life care as perceived by physicians and a better family-patient relationship reported by the family, the two of which were associated as well. Closer relationships and secure attachment styles have been associated with less increase of problem behavior over time [31, 32]. Further, Dutch work in cancer care found that patient’s awareness of dying was associated with acceptance of dying . Possibly acceptance of dying is more difficult with a poor family-patient relationship due to unfinished business and lack of closure.
We found no differences by stage of dementia. The other understanding items we examined, namely comprehension of complications, prognosis and counseling, were unrelated to patient comfort. Compared to these items, the broad perception of dementia as a disease you can die from may be more relevant to palliative care and decision making and less confounded by patient condition or socially desirable responding.
Because consensus on prognosis and planning of palliative care is important to physicians [3, 4, 33], families’ perception of dementia as a terminal disease may help physicians in providing better end-of-life care. Families’ perceptions were important even though family views are less influential in decision making in The Netherlands than in the US due to a culture of Dutch physicians being more directive . In The Netherlands, physicians are based in nursing homes and work frequently with dying patients and curative interventions are frequently withheld in dementia [12, 35]. In our study, almost all physicians perceived dementia as a disease you can die from. This may be different in other countries, where curative interventions are commonly provided . Cross-national work may be important; for example, when explored, in our Dutch data we could not replicate findings of Mitchell et al. of family perceptions being related to potentially burdensome treatment at the end of life.
Limitations and strengths
Although associations should be interpreted as causal with caution, our prospective study with patients enrollment upon admission to a nursing home was based on a previous, thorough, conceptualization of decision making [5, 13], and we employed established methods for mediator analyses in the final step.
The perception of the dementia was measured ahead of patient’s comfort, but some mediators were measured in parallel. Multiple in-between assessments would have been preferable. The quality of the family-patient relationship referred to the relationship before the patient developed dementia so does not fulfill criteria for a mediator requiring temporal precedence . Although we did not measure the quality of the present relationship nor the families’ psychological conditions in detail, we feel this mediator is a proxy for current relationship and relates to decision making. We are supported in this by our finding of trends of family decision making in the months before death mediating the association between perception and patient’s comfort, but power was insufficient to estimate coefficients because such decisions were made in only about half of the cases. Further, we could not identify specific treatments as mediators and physician’s perception of quality of end-of-life care was a subjective assessment. The power to detect associations between life expectancy and comfort was limited due to few families providing any prognosis. Further, exploring possible selection bias, we found that family comfort assessments were not different with missing staff outcome assessment (18/179 cases), and associations with family comfort as an outcome with the combined perception of dementia as a disease you can die from did not differ either. However, families were more likely to disagree with dementia as a disease you can die from when staff comfort assessment was missing, which implies we even underestimated families’ disagreement with the perception.
Average length of stay (follow-up) until death was short (one year) for which we adjusted our analyses and follow-up until death was as long as three years. Finally, we were able to explain a considerable part of the main association with two broad evaluations as mediators, but not all. The association of comfort with the broad perception of dementia may reflect a complex interplay involving multiple factors.