A colleague recently forwarded me an essay from The New England Journal of Medicine about what we call in the field “elder self-neglect.”
The essay describes a patient who has piles and piles of paper in his home, rotting food in the kitchen, rat feces everywhere. It addresses what doctors and families might do in such a situation.
The authors of the journal essay suggest a few things:
1) Lowering our standards for safety and cleanliness, i.e. clearing paths through the clutter.
2) Making sure that the patient’s doctor works with the patient to identify goals and solutions.
3) Arranging for a home visit by the doctor, as one way of paving the way for a home care team.
4) Making “worst-case scenario” plans.
I’m glad that such a prestigious journal published this essay. As a society, we need to talk more about self-neglect. As the essay states, as many as one in ten older adults neglect their own care, and the rate is higher among poor and/or African American elders. We need to talk more about how we balance an elder’s right to make his or her own decisions against his or her safety.
The NEJM essay also makes these points, but then says that “many such people do not have moderate or severe dementia and so are not considered legally incompetent to make health care decisions.”
This is where I differ greatly from the authors. My feeling is that in rare cases, self-neglect may be a choice. Most of the time, as I do geriatric house calls around the San Francisco Bay Area, I find that self-neglect is a huge red flag.
A normally-functioning person simply does not want to live among rotting food, rat feces and piles of junk.
The first question to ask is, “Does this person have the mental capacity to make the choice to live this way?”
Caregivers, family and friends need to push for a full neuropsychological exam in a case like this. The “Mini Mental” exam, asking the person what day it is, or who the president is—that’s not enough to make an accurate judgment of their mental status. Plenty of elders I’ve met know what day it is, but also think they can talk to dead relatives or are happy to give out their bank account numbers to strangers.
Also, don’t forget that some medical conditions can create significant mental fallout: heart problems, cancer, Parkinson’s disease and many others. Ask your elder’s doctor to explore whether a medical problem could be behind the self-neglect.
If the person does have capacity, then all we can do is to set up a structure (caregiving agencies and so on) that can swoop in if and when the person eventually loses capacity. Families should consult an elder care attorney to know their options. They should try to talk to their elder and ask them what they would want done if they were in the hospital, or if they lost their capacity to make decisions. Sometimes, elders are more open to this kind of conversation when there’s a problem or a crisis.
But most of the time, I find that elder who’s severely neglecting his or her own care does have some kind of dementia or a medical problem.
The authors of the NEJM essay emphasize compromises and working with the patient. Of course, I’m all for that. But remember, it’s next to impossible to negotiate with someone who has dementia. If a person gets a proper psychiatric evaluation—and that’s a full neuropsychological exam—and then is found incompetent to make health decisions, then that person needs to be protected.
That doesn’t mean snatching a person from his or her home. I believe that elders’ wishes should always be honored if at all possible. If a person doesn’t want to take non-essential pills (like vitamins), or if a person wants to bathe just once a week, that’s fine. But it’s not OK for an elder to be living in a home filled with piles and piles of paper. That’s a fire hazard. Clearing paths through the mess is not enough. It’s not OK for an elder to be living surrounded by rat feces. That’s a health hazard.
Of course, all elders who are able should be able to make their own decisions. Just make sure that self-neglect really is a decision, and not the sign of a deeper problem.
Elizabeth Landsverk, MD Specialist in Geriatrics