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.)
Lauri Hart says
Substitute a commercial Hospice service for the private RN and you’ve described my experience as my mother’s medical decision maker. Coordinating between the assisted living staff, their nursing group, the hospice service and her doctor often meant a minimum of a dozen phone calls. When something happened, I would get 4 separate calls informing me of the same thing. There was never any coordination of care and/or communication. The primary care doctor was as frustrated as I was with the chaos. My mother was in a locked dementia ward with a national assisted living home with mid/late stage Alzheimer’s and I was never able to get them to not send her to the hospital when she took a minor fall. The minute she went to the hospital they would do a CT scan because she was ‘alterred’ which was a waste of time and money. She would lay around the ER for 4-6 hours and then be released back to the home unless I was able to make it to the assisted living home before she was transported and sign off that I didn’t want her treated…each time she fell. This despite a POSL form that stated ‘comfort only, no treatment.’ It’s an endlessly frustrating system. Granted, not all facilities have the same fall policy (we ended up moving her to a different facility which did not have this policy.)
So, no, I don’t know of facilities that have good communication. In the last 6 years, I had my mother in 2 facilities in PA and 2 in CA. None of them seemed to have online medical records, nor did they use email for communication other than events/parties. Getting information during periods of medical crisis required several phone calls to find the person on duty and in charge of her care to get any information. Anyone else would give vague information or defer to someone else. When the caregiver was off the next day or two, information communication was difficult and often conflicting.
Leslie Kernisan, MD MPH says
Thanks for sharing this story, but wow, how frustrating, especially given your mother was on hospice.
It is truly unfortunate that communication is so poor most of the time…I guess it’s because the businesses involved have no particular financial incentive to fix this problem and instead it would cost them time and money to implement a solution. (And that’s assuming a decent solution exists to be implemented.)
Let’s hope that someone “disrupts” this and that things get better within the next few years.
Vadim Cherdak says
We at eCare21 have been built this kind of platform and constantly improve it.
Do you want to have a demo and more detailed information?
Here is some intro in what do we do for our customers:
Please visit us at ecare21.com and download our apps.
Leslie Kernisan, MD MPH says
This service is for home care, not for coordinating care for someone in assisted living. Not a bad concept, but not clear it’s a solution for the situation described in this post.
Vadim Cherdak says
Leslie, you are right. It’s wasn’t designed for care manager, but mostly with family caregiver in mind. However, if all parties ( old lady, live-in aide, RN from facility, family member, etc.) are members of the circle of care for the Old Lady, all communication can be done pretty quick and everybody involved can be informed and coordinated. We actually tested it with one of large assisted living operators and they like it.
I would be very much interested in your advises how do you see to improve eCare21.
Can we talk? My email: vcherdak@ecare21.com
Leslie Kernisan, MD MPH says
Yes well, that is a big “if” (“if all parties are members of our service”) and seems to be the major stumbling block for this type of program.
I appreciate your interest in my perspective, but my availability to give free feedback on specific products and services is quite limited. (More on that here.) Suggest you approach the primary care doctors for the older adults in the facility you’ve used for testing, and see what they think of it. Also check and see what family and home health agencies think. Write it up as a case study and let us know when it’s available.
You can also search this blog for “care coordination” as I’ve written several times about the difficulties I encounter in trying to collaborate with the many others who are involved in my patients’ care.
Good luck!
Olga Jewusiak says
Leslie,
My co-worker sent me the link to this post with multiple exclamation points and fireworks because the post, your frustration and plaintive call for something, anything, better – is essentially reason Caremerge exists.
Caremerge is a care coordination network that began with a specific focus on Assisted Living (our CEO and CTO basically living in senior living communities for months shadowing workers, understanding workflows and pain points before writing a lick of code to create what would become the platform for our entire suite of solutions). We’re HIPAA compliant, integration ready (with big names we’ve integrated with) and focus on ease of use in order to encourage adoption.
Our Family Engagement module includes an iOs/Android-friendly App that allows families and communities to communicate on the go, anywhere, anytime. Our partners using Caremerge Family Engagement see an increase in Family Trust by about 68% in less than 3 months, Family Satisfaction and Family referrals hover in that same range. More than anything though – people appreciate that they’re connected to one another to ensure that their loved one is thriving. I would welcome an opportunity to discuss our mission and demo the app but understand your time is limited.
Cheers!
Leslie Kernisan, MD MPH says
hi Olga, thanks for your interest in addressing this need. I met Asif Khan at an event in 2012 and if you search the blog you’ll see that I wrote about Caremerge back then as well. It is over 3 years later and neither Caremerge nor anything like it has been implemented at the handful of facilities where I see clients. But I hope to have the opportunity to try something like this soon (in real life, not as a demo).
I’m glad if the families and ALF workers you’ve surveyed seemed pleased with the product. But that does not tell me much about well it works for PCPs who are attempting to provide appropriate care to their patients residing in facilities. Is there any way for us to get feedback from them? (Needs to be a doc with no financial interest in your company, not a family member of someone with the company, etc.)
Or from home health agencies; have they been willing to sign on and join? Just recently I received a voicemail from home health RN saying the patient’s BP is high. When I asked for all the recent readings, I received a picture of the handwritten BP log. (Sigh.)
David Utzschneider MD PhD says
Leslie
I second your frustration. As a hospitalist-forever it’s not much better on the hospital side; usually the primary care provider doesn’t have access to the EMR; the patient is starting to spend more time in subacute rehabilitation facilities than at home so not really getting in the the PCP’s office, the family is often dealing with the slightly more functional parent at home alone than the one in the hospital, etc. Two solutions (and no I don’t know where the money would come from to implement this) would be a cheaper/more open medical record
that’s easier to access for all and resources for primary providers to see the patient at home.
Leslie Kernisan, MD MPH says
Thanks for sharing your perspective as a hospitalist.
Wouldn’t it be nice if people had their own universal record that all outpatient and inpatient providers could tap into? Would be a security risk though, plus not clear that anyone has an incentive to create this or make it usable. (Maybe individual companies could compete to provide the usable interface. But you need underlying standards, and they’ve been working on that…forever!)
I would certainly like more support for PCPs to see patients at home, but it also should be easier than it is to manage certain things by phone. And it is crazy to have to spend lots of time on the phone gathering information…a problem I know you encounter as well.