How to help patients and caregivers keep track of and follow through on the many things we ask them to do?
I found myself thinking about this yet again last week, after the group of UCSF students I was teaching brought up the following concern:
“We’re worried about the patient getting overwhelmed by our making too many recommendations.”
Good point, learners.
I had to admit to them that I probably don’t think of this nearly as often as I should. But it’s such a good thing to consider. Because the truth is, I think it’s often harder than we realize for patients and caregivers to keep up with the plan for the many problems on an older adult’s list. (It can also be tricky for a clinician to not lose track of everything going on — a topic for future posts.)
In geriatrics, of course, we usually have a lot of problems to address: six or more in a visit isn’t uncommon in my practice. That’s because frail older patients have many ongoing chronic conditions, and often raise additional complaints at each visit.
But even younger Medicare patients often present with multiple problems.
Here’s a common scenario: If you have diabetes, high blood pressure, arthritis, glaucoma, are on eleven medications, and in the visit we uncover uncontrolled blood sugar, too high blood pressure, falls, urinary frequency, anxiety, trouble managing medications, and social isolation, then we are going to have a lot of shared decisions to make. Which will lead to a long list of recommendations.
Furthermore, I consider difficulty managing meds to be a sign of possible
cognitive impairment or possible financial difficulty; if either or both
are present, then plans for every other medical problem will need modifying.
(Also note that this isn’t a very medically complex patient in geriatrics; many present with this stock set of problems plus congestive heart failure, COPD, kidney disease, and complaining of pain and shortness of breath too. Oh and, rash and toe fungus. )
So here we are now with our mutually-agreed upon problem list and care plan. Now what?
The challenge for patient and caregivers: so much to do
My own experience has been that most patients and families have trouble keeping up with more than 1-2 recommendations. The trouble is, for adults with multiple medical problems, a single visit can generate multiple recommendations. And of course, the more action a recommendation requires, the less likely it will happen.
The simplest recommendations ask patients to do something simple, just once. Like “Stop medication X.”
But most recommendations are more complicated: “Increase your metformin to 500mg three times daily” requires a small ongoing change in what a person does every day.
Then there’s “Talk to your daughter about helping you figure out a way to not forget to take your medications.” (This is the kind of amorphous directive that the Heath brothers warn about in Switch, one of my fav books on change management.)
Or, “Check your blood sugar every morning before eating. If your blood sugar is over 150 for three days in a row, increase your Lantus by 2 units.”
Or “Start bladder training. You can review the attached handout for instructions.”
Let’s reconsider the example of the patient above, with her out of control blood sugar and blood pressure, plus falls, anxiety, urinary frequency, difficulty managing medications, and social isolation. Here are the problems we routinely face in helping such patients:
- Do we list recommendations for all the problems we uncovered in the visit, or just for a few?
- For every problem we make recommendations for, how to help patients and caregivers follow through?
- If we focus one just one or two problems, how do we ensure we don’t lose
track of the other issues? (Patients seem to hate coming back every
week for another visit, but that’s often what we suggest, assuming we
have appointment slots available.)
- How do we clinicians update the plan for a problem, based on feedback we get from patient and family? (Many problems require a trial of an intervention before we can decide how to proceed long-term, or may require diagnostic results before we move on.)
What kind of technology can help us?
Technology is already helping, in that EHR systems are now creating clinical summaries for patients (it’s a criteria for Stage 1 Meaningful use).
This is a step in the right direction, but it’s not enough.
What patients and caregivers (and the clinicians helping them) really need is something more on the order of a sophisticated task management system. Or possibly even project management tools.
Specifically, we need something that:
- Can keep track of multiple problems and recommendations
- Helps patient and clinicians identify which recommendations will be the focus now, versus later
- Allows us to update each other on the status of problems, and the plan for each problem
- Allows us to break down the plan for a given problem into manageable and actionable chunks
- Allows us to share information as needed with others involved in addressing a problem, i.e. other clinicians (such as nurses for problem-specific coaching), family caregivers, etc.
A bonus in my view would be technology that allows the clinician to enter several recommendations all at once (when the clinician is thinking comprehensively about the patient), but allows patient and caregiver to work through them over time.
So for instance, let’s imagine that for the patient above I have recommendations for the following problems:
- diabetes management
- blood pressure management
- urinary urgency
- medication management
Let’s also assume that the recommendations for these problems are NOT interdependent (often they are, but we’ll go for a simpler scenario).
I’ve actually discussed and provided management recommendations to patients and families on this many problems within a single 30 minute visit (it’s a bit of a hustle, but possible). But asking the patient to take action for each problem would probably be overwhelming.
However, imagine a platform in which I propose recommendations for all problems and prioritize them. On the patient’s side of the technology, he or she gets to work through a problem for a period of time, and then later is given recommendations for the next problem. (These could be staggered based on time, such as weekly, or based on completion of the previous problem’s plan.)
Such technology could allow us as clinicians to be more comprehensive, with less risk of overwhelming patients and families. This would enable clinicians to make best use of their time, and help patients be more successful in taking the many steps needed to improve their health.
So is this technology out there? I’m not sure. Several companies are working on consumer products meant to help caregivers manage multiple tasks, but it’s not yet clear to me how easy it will be to integrate clinical recommendations into the programs.
On the provider side, patient portals are becoming de rigueur, but as far as I know, they have not yet evolved to support this kind of sophisticated care plan management for patients.
But hopefully that will change. In the meantime, if anyone has come across technology that helps clinicians help patients manage multiple problems, I’d love to hear about it.
In a nutshell
It’s very common for older adults to present to a primary care clinician with multiple problems, which can generate multiple recommendations for patients and caregivers to implement at home. But patients often have difficulty managing more than 1-2 recommendations, so a comprehensive approach is often too overwhelming.
We need technology to help patients follow through when there is a lot to do. Specifically, we need help making multiple recommendations more manageable for patients and families. Something along the lines of sophisticated task management (or perhaps project management?) would help.
The ideal technology would facilitate and reinforce effective collaboration between clinicians, patients, and caregivers, and would allow all to work through a longer problem list together over time.
If you can suggest any such technologies that might work for older adults with multiple problems, definitely let me know.