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Elder Self-Neglect: A Palliative Care Emergency?

There is a very important article in the Aug 5 JAMA by XinQi Dong of Rush University examing the relationship between elder self-neglect and abuse and mortality. There is an excellent editorial by Tom Gill from 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.

Comments

Dan Matlock said…
Great post! Particularly the last paragraph. I think that allowing "elders with self-neglect have expressed a clear preference to continue living at home without assistance" to stay at home was one of the toughest and most important lessons in my training. Luckily, we live in a culture where good decisions (informed, values concordant, grounded in the theory of autonomy) trump good outcomes (grounded in the theory of beneficience). If it wasn't this way, we would be forcing a lot of elderly patients into nursing homes where they would likely live a longer and more miserable life.
XinQi said…
It is with great humility to read the thoughtful piece by Dr. Covinsky on our paper. UCSF has been the nurturing ground for great work under Drs. Landefeld and Dr. Covinsky as leaders in the field and Beeson mentors.

The death rate for self neglect at one year was 270 deaths per 100 person years, indicating that many of the older adults with self-neglect died within first 6 month.

With respect to causality, of course I am being a bit biased, in believing that it very much likely to be causal. According to the Bradford Hill causal criteria, our findings meet almost all of the criteria specified. However, I do very much agree that much more research is needed in this area. One of our current projects is to elucidate the health services utilization of self-neglectors prior to death, by using the CMS SAF files from the CHAP study. Other project involves the improved understanding of racial/ethnic difference and cultural differences with respect to adverse health outcomes. These issues are critically important as previously described in Dr. Alex Smith’s JAMA manuscript earlier this year. We hope to report our findings on these issues in the near future in order to further elucidate the causal mechanisms more precisely.
ken covinsky said…
XinQi--thanks for responding, and congrats on such a great paper. In terms of my comments, it would probably be more accurate to state that it is difficult to determine how much of the association is causal and how much is illness severity. While I think some of the association must be related to illness severity it seems almost certain that there must be a causal component as well.

From a purely methods point, your idea of merging CHAP with elder abuse and neglect reporting systems is one of the most creative uses of multiple data sources I have seen. Merging all this with CMS data should be yield some important findings.

Dan--I think the scenario you discuss---the patient with self-neglect who seems competent and seems to want no intervention--is one of the toughest clinical situations we encounter. Maybe at some point we can get XinQi and other experts in elder neglect to give us some thoughts as to how they approach these situations.

It does strike me that these patients are sometimes willing to accept some help when someone very skilled in communication (often the social worker) gets involved.
Maggie said…
About the question of causality: there's a third viewpoint I wish would be considered: whether a death is caused by the report.

Two incidents come at once to mind, among people I have known well, but I'll only tell you one of them: the elder who was still living alone and insistent on staying there. She had given up driving but refused several offers of live-in caregiving and limited family visits to brief weekends.

When her 50-year-old daughter involved the caseworker machinery after finding an outdated bottle of milk in the back of the refrigerator (the old lady said she hadn't been able to reach the back of the fridge in years and anyway was using the fresh quart on the door for her tea) ... the result was a few days of argument and the eventual decision to move the old lady to a facility.

It was a nice facility, as such places go. Much cleaner than her cabin in the woods. Also much noisier - non-stop television, plenty of conversation with people she didn't know and didn't much like. More nutritious meals on a more regular schedule, mostly of foods she didn't care for and occasionally including foods her innards couldn't tolerate.

She couldn't take her beloved old dog with her, though her daughter occasionally brought him to visit. She couldn't see her beloved mountains from her bedside window any more. Her remaining friends lived too far away for frequent visits.

Anybody surprised that she died within six months?

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