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
- falls
- anxiety
- medication management
- socializing
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.
Janice Reynolds says
This is an interesting topic and a very important one. I believe also that multiple recommendations may be over whelming. One other issue needs to be addressed; can this person read and at what level? I do live n a rural state but I believe the problem of health literacy is everywhere. I have seen people admitted to the hospital because they couldn't read the labels on the their medication bottles. If their SO has poor health literacy as well. I know of one GYN who handles this well but many physicians and nurses do not (I won't do the procedure on someone who can't read the handout). Poor health literacy greatly increases the likelyhood patients cannot follow recommendations.
Leslie Kernisan says
Great point! The health literacy issue is very important. Hopefully technology will make it easier for us to provide instructions that are at the right comprehension level.
Tyler Hayes says
It's been almost a year since you wrote this now. Have you discovered any solutions in the meantime that fit what you're talking about? How do you feel about the landscape today (vs. last year)?
Leslie Kernisan says
No, haven't found any solutions. But trying to keep up with the new offerings is like drinking from a fire hose; certainly possible that something is out there and I haven't yet spotted it.
Generally, I would say there hasn't been tons of focus on meeting the needs of people with multimorbidity…although since these are high utilizers, quite possible that solutions will be developed as part of care management solutions for accountable care organizations…but these probably won't be marketed to small practices and individual families.
czthomas says
Your UCSF students were a pretty astute bunch, I'd say. This is such an important post, Dr. K – and not only for the aging patient, but for any patient facing more than one overwhelming diagnosis and associated symptoms. When I wrote about this recently, comments from my readers who are juggling both chronic and acute medical conditions were real eye-openers – and none of these were seniors. http://myheartsisters.org/2014/02/17/confessions-of-a-non-compliant-patient/#comments
For example:
– "Heart disease. Fell down stairs. Compression fx t-10. Pain all the time"
– "Multiple pills three times a day, insulin pump alarms, carb counting, pain management, BP, glucose, CPAP"
– "cardiomyopathy with LV compaction, pacer/ICD, pain, fatigue, Sjogrens, lupus and possible RA – and now allergic reaction to anti-inflammatories"
Any one of these medical conditions might knock over the average healthy person. Imagine living with what feels like an avalanche of diagnoses – and feeling sick at the same time.
I was reminded of my late mother while reading your list of recommendations. My Mum (definitely an old-school patient) would have sat there in her own doctor's office smiling and nodding politely at each recommendation from her longtime family doc, who would have sent her on her way feeling confident that he had accurately informed her of his recommendations (and then later feeling puzzled and frustrated when she showed up for her next appointment having ignored virtually all of it).
To ask her doctor a clarifying question about what she didn't understand would have been to appear stupid, or to take up too much of his valuable time. Figuring out technology on top of that confusion may have pushed her right over the edge! It's a very real dilemma – thank you for continuing to focus on this under-appreciated element of the chronically ill patient.
regards,
C.
Leslie Kernisan says
hi Carolyn,
Thanks for your comment. Well, I think what we both realize is that primary care really is rocket science. We need to make good care manageable for average providers, but most of all we need to make it manageable for average patients and families.
I very much appreciate what you do, articulating the details of the patient experience and reminding us as providers to think about what self-healthcare feels like when you have to do it every day, even when you aren't feeling good.
At its best, technology helps us get more done with our time and efforts. So I think eventually it will be key to making good care more manageable. But it's a tall order for the tech people…after all, the tech has to make life easier for patients and providers, which historically it often hasn't done.
We'll get there eventually. Onwards!