If we are going to provide compassionate and effective care to an aging population, at a cost we can all afford, we are going to have to get better at dealing with health concerns that come up often.
I am perpetually struck by how much effort and friction is involved, when I have to address certain common health issues.
Today I’m going to share a recent example: new confusion in a 90-year-old elderly woman who lives in assisted-living. Goals of medical care are to avoid hospitalization, and to focus on optimizing function and comfort.
Brief backstory: this elderly woman has Parkinson’s disease, but generally has very good cognition. She has private 24-hour caregivers because she can’t get up out of chairs on her own, needs stand-by supervision when she gets around her apartment with a walker, and needs to be taken by wheelchair to the dining hall and other locations within the facility. She also needs help with continence care. And, she’s been getting home health services for the past few months, for a sacral pressure sore.
As you can see, lots of people involved in her health and care: private home aides, home health agency RN, assisted-living facility staff (which includes their own RN), and an attentive adult child who visits often. This lady is essentially home-bound but very occasionally gets out to see her neurologist or another healthcare provider.
And now for what happened with confusion. For me the story started when the woman’s son sent me a message, saying his mother was now having delusions and crazy thoughts, and that her paid caregiver said she hasn’t been herself for the past 36 hours.
So this sounds like delirium: worse than usual mental functioning, generally brought on by an illness, stress on the body, or sometimes by a medication side-effect.
In other words, this is a common concern that comes up for many older adults, especially if they have a chronic condition that can cause cognitive impairment, such as Parkinson’s.
And cognitive impairment is apparently very common among assisted-living residents. Here’s what a 2014 Health Affairs paper says:
Estimates derived from national data indicate that seven out of ten residents in these residences have some form of cognitive impairment, with 29 percent having mild impairment, 23 percent moderate impairment, and 19 percent severe impairment. More than one-third of residents display behavioral symptoms, and of these, 57 percent have a medication prescribed for their symptoms. Only a minority of cognitively impaired residents reside in a dementia special care unit, where admission and discharge policies are more supportive of their needs.
Given this data, delirium must be very common in assisted-living, and you’d hope that a clinician would be able to evaluate and manage without too much hassle. But let’s see what happened in my case.
Evaluating a worsened confusion complaint in the real world
Here are the steps I had to take after my patient’s son called me concerned about new delusions:
- Call back the concerned son, get more details regarding the symptoms and when it started. Much of it was reported by the paid private caregiver to the family. The private caregiver also thinks the patient is perhaps a little weaker.
- Call the home health agency, to ask when they last saw the patient (turns out it was the day prior), to see what they’ve noticed, and to find out when they might be able to check a urine and perhaps do a blood draw.
- This means you call the agency, they pass you on to a nurse or clinical person who is usually not the person who has actually seen your patient most recently, and that person looks through their clinical notes to see what’s been documented. They relay things to you by phone and will fax you notes if you ask them.
- They say that no changes in mental status were noted the day prior.
- When I ask them to check vitals when they go the next day, they tell me they will do so but that I also should ask the facility RN to do this.
- I fax them orders for checking urine and blood.
- Call the facility RN, to ask what they have noticed in terms of cognitive and physical changes from baseline, and to see if they can check vitals. Also to request a copy of the most recent med list, because I need to see what the patient is taking and see if anything is new.
- Facility RN complains to me that this is the first she’s heard of this, and want to know why the private CG didn’t tell her. I advise her to discuss this with family and private CG herself. I really do not want to end up in the role of managing how all these people relate to each other. I am just the consulting geriatrician.
- Facility RN tells me I have to fax the test orders to her too, because it’s her team that will collect urine, not the home health RN.
- She says she’ll go see the patient and talk to her staff, and get back to me.
- The patient’s son calls me and is concerned that the delusions are due to discontinuing a small dose of antipsychotic two weeks earlier. (We had started this three years prior, when the patient was having a lot of confusion post hospitalization. We’d finally gotten around to a trial off of it.)
- We decide to resume the antipsychotic, while still checking for UTI and other common causes of delirium in older adults.
- This requires faxing a prescription to the pharmacy AND to the assisted-living facility. Because when you prescribe to ALF residents, both the pharmacy and the facility need the order. (Although sometimes they seem to pass it on to each other.)
- Home health RN decides to go that very same evening to see the patient. They find the patient at dinner seeming to be her usual self, and decide to return the next day to check vitals and draw labs. So far neither home health agency staff nor facility staff are reporting unusual behavior. (However, delirium fluctuates so seeing the person lucid does not mean something is not going on.)
- Facility RN calls me back. Says the patient looks ok tonight but one of the med techs thinks the patient seemed a little more confused earlier today.
- I send messages to the patient’s worried son, relaying what I’ve found out and the plan for evaluation.
- The next day home health calls me and leaves a message reporting the patient seems fine. However, I’ve also received messages from the family saying the patient called and sounded delusional. Sigh.
- In their voicemail, home health reports the vitals and the blood pressure strikes me as high for someone with Parkinson’s.
- I call the home health RN back (home health providers often leave doctors with their cell phone numbers when they leave voicemail messages reporting their findings). I ask if they’ve been checking the BP when they come for the wound twice a week and how the current BP compares. The RN says yes they document BP and pulse at every wound care visit and she’s not sure what they usually are but she can have the agency fax me their records.
- I find myself wondering yet again why there’s no easy way for me to query the data that the home health agency collects on my patients.
- Lab results are available the next day and are negative. I relay to family, and we decide to keep monitoring the elderly lady for now.
- A few days later, I realize that I never did receive the BP log from home health. I debate whether to chase it down; the reported BP was higher than I’d expect for a Parkinson’s patient but overall acceptable for a person this age who is frail, has mobility issues, and is at high fall risk.
- I check in with the son, who says his mom has been doing ok and seems a little clearer. We decide to keep watching.
And there you have it. A lot of phone calls and faxes to look into a delirium complaint for an assisted-living resident.
Now, you might say she’s a little more complicated than most. Most people in assisted-living don’t have their own paid 24-hour caregivers, and don’t have home health care involved either.
But still, it struck me as quite a lot of work to get the information I needed, to coordinate care, and to keep everyone informed of what was going on.
Of course, if I had an office and a team like most physicians do, I wouldn’t be doing so much of this personally. The concerned son’s call might have gone to a triage nurse, who would’ve had to chase me down. Unless I’d set up some kind of process for responding to a delirium call, which perhaps could be done.
Still, it really needs to be easier to get information from assisted-living facilities and home health agencies. Shouldn’t all their electronic record systems be designed so that outside clinicians can query?
When will most of us be using communication platforms that simplify the information exchange between doctors, ALF staff, families, and the other agencies that may be involved (such as home health agencies, hospice agencies, or private paid caregivers)?
When will I be able to provide the right assistance without spending so much time phoning, listening to voicemails, and faxing??
(For an interesting commentary on antipsychotics in assisted-living residents, I recommend this 2015 Letter to the Editor by Zimmerman et al.)