There is a very important article in the Aug 5 JAMA by XinQi Dongof Rush University examing the relationship between elder self-neglect and abuse and mortality. There is an excellent editorialby Tom Gillfrom Yale University.
The article examines the risk for mortality in older persons following a report of self-neglect to social service agencies. Self-neglect can be difficult to define. Dr. Dong’s description is useful: “Self-neglect generally manifests itself in an older person as a refusal or failure to provide himself/herself with adequate food, water, clothing, shelter, personal hygiene, medications, and safety precautions.”The key finding: A report of self-neglect was associated with a huge increase in mortality. During the year after a self-neglect report is filed, the risk of mortality is increased six fold. While the article does not provide specific death rates at 6 months and 1 year, it is clear from the data in the article that it must be quite high and that among those who die, many of the deaths happen quite soon after a referral.
From an epidemiologic point of view, it is interesting to speculate whether the high rate of death associated with self-neglect is causal (ie, self-neglect causes death) or whether the high rate of death is explained by greater illness severity in those with self-neglect. As nicely explained in Dr. Gill’s editorial, the article can not really distinguish between these possibilities. I think the intuition of most Geriatricians would suggest both of these explanations are true. It is hard to believe that the failure to provide for basic needs is not bad for health. It seems that it must precipitate declining health. On the other hand, it is also the case that the sickest most frail elders are at higher risk of self-neglect. It is likely that self-neglect was frequently preceded by major declines in health and functioning that this study was not able to measure.
However, when our division discussed this article at our monthly journal club, we all agreed that from a policy point of view, it does not really matter whether the association between self-neglect and mortality is causal or not. The bottom line is that the group of elders with self-neglect represent an extremely vulnerable group who do poorly over the next year.
My title for this post is a perhaps not so good play on the title of Dr. Gill’s editorial. However, my central point is that palliative care concerns should be front and center in the evaluation of a patient with self-neglect. I would argue that a palliative care practitioner needs to be part of any multidisciplinary team evaluating self-neglect. In an elder with self-neglect, it seems the primary concerns shoudl be the relief of suffering, and the avoidance of iatrogenic suffering. This includes a careful evaluation of symptoms, caregiver needs, and functional needs. This is especially the case when the clinical picture suggests the end of life is near, though even those with longer life expectancies will benefit from simultaneous palliative and traditional medical management.
When our faculty and fellows discussed this article, a number pointed out that some elders with self-neglect have expressed a clear preference to continue living at home without assistance. We generally agreed that unless the elder’s living situation presents a hazard to others, this preference should generally be honored in competent elders in all but the most extreme cases. This illustrates that the team evaluating such an elder needs to include a provider with experise is discussing patient preferences and values and with the training to develop a treatment plan consistent with those values. Those trained in Palliative Care are best equipped for this role, and this is another reason for viewing self-neglect as at least a Palliative Care Urgency.