Guest post by SPM member Leslie Kernisan, whose words first appeared here in a September interview at Medicine X: “Leslie Kernisan (Twitter @GeriTechBlog), a geriatrician who’s deeply interested in and committed to enabling elders and caregivers through patient and family engagement.” (SPM members are invited to submit guest posts; guidelines are here.)
Leslie writes, “We’ll be talking about how we might bring more geriatrics health information to older adults & their caregivers, and other aspects of adapting the e-patient approach for an aging population. Hope you can join!”
Aging & e-Patients: Challenges and Opportunities in Geriatrics
Mrs. A is an 86 year old widow who lives in assisted living. She’s been diagnosed with diabetes, hypertension, atrial fibrillation, COPD, osteoarthritis in her back and knees, stage III chronic kidney disease, osteoporosis, depression, and urinary frequency. Her daughter Ruth lives about an hour away. She’s been worried about her mother’s mood and memory.
You don’t have to be a geriatrician – as I am — to find yourself taking care of someone like this. Many of us have an elderly relative whose multiplying health problems cause us to worry.
And worry we certainly should, because people like Mrs. A often struggle with health, and with healthcare.
To begin with, the ideal management of most of her chronic conditions requires her to take on a certain amount of “self-healthcare.” This includes things like monitoring for symptoms, taking medication, and trying to stick with certain “lifestyle changes.” When people suffer from multiple conditions, as Mrs. A. does, the list of things to do for one’s health can become a lot of work.
This can be a big challenge for people of any age. But at some point most older adults will experience declines in their physical abilities, and sometimes mental abilities. Just as they have more and more to do healthwise, they may find themselves less and less able to manage it successfully on their own. And so, worried family members begin to step in, either with health-related tasks or with life tasks such as shopping, transportation, or finances.
Mrs. A is a fairly classic “geriatric” patient, in that she’s older and is experiencing many health/life problems that tend to happen as people age:
- Physiologically vulnerable body and mind
- Multiple chronic conditions
- Chronic physical and cognitive impairments
- Chronic caregiver involvement
What does this mean, when it comes to the nitty-gritty of healthcare? Well, physical and cognitive vulnerability mean that older adults are especially prone to side-effects from medication. Multiple chronic conditions require a different approach to symptom evaluation, and people often need help prioritizing what can otherwise be an overwhelming list of healthcare to-dos. Chronic impairments in mobility or memory often mean the self-care plan has to be simplified, or extra home support recruited.
And of course, there is lots more to be done, to help someone like Mrs. A have the best function, independence, and well-being possible. Much of it – such as facilitating social activity and providing help with home chores — is not strictly speaking medical care. But often, there’s an important connection to health concerns.
Given how many older patients need healthcare, and use healthcare, you’d think that our healthcare systems would be optimized to provide them with care that is adapted to their vulnerabilities.
But unfortunately, this isn’t the case: if you look around, you’ll see that most older adults are provided healthcare in much the same way as it’s provided to younger people. In other words, they are provided healthcare that isn’t modified to better fit with physical vulnerabilities, cognitive vulnerabilities, complexities related to multimorbidity, or family caregiver involvement.
What to do about this? It’s a real problem, as it causes a lot of extra suffering for older patients and their families. (And it also costs us collectively a lot of money!)
A common response from the experts is that we need to:
- Improve healthcare quality in various ways. This includes reducing errors, better systems of care, better individualizing of care to people’s preferences, etc.
- Increase the number of people trained in geriatrics, both by increasing the number of clinicians specialized in geriatrics, and also by providing geriatrics training to all clinicians who care for adults.
I’m all for this. However, I believe there’s yet another approach that we can and should pursue:
- Adapt the e-patient approach to empower older patients and their families to more actively participate in obtaining better healthcare.
Now, I’m not an expert on e-patients, but as an interested observer, I’ve noticed that many e-patients research their diagnosis quite thoroughly. I’ve also noticed that many e-patients join online communities, usually oriented around a health condition or class of health conditions (a “disease community”).
This seems like a good approach if you are diagnosed with a certain type of cancer, auto-immune disease, or other chronic condition.
But what if, like Mrs. A, you have nine diagnoses, all of which are relatively mundane chronic conditions? (As any doctor can tell you, Mrs. A isn’t exceptional from a medical perspective.)
For Mrs. A – or her family – I’m reluctant to recommend that she research ideal care for each of her conditions. To begin with, this be an astounding amount of work. But also, it would be repeating the current endemic weakness of modern medicine, which is to overly focus on individual diseases and not pay enough attention to how they overlap in real live people. Especially real live older adults. (Take a look at this patient-centered site for diabetes, it’s terrific, but I don’t see anything about older people with diabetes).
There is, of course, another way to approach the healthcare of older people with multiple chronic conditions: geriatrics, which champions commonsense modifications to healthcare, in order to be a better fit for people like Mrs. A.
Back to my original question: what would the e-patient approach look like for someone like Mrs. A? Here’s what I’ve been thinking:
- Access to suitable health education materials. These would be about the geriatric approach to common health and life problems that affect older adults. In other words, we would teach geriatrics to older adults and family caregivers.
- A community of patients and caregivers. This could either be a community of older adults with multiple common problems, or you could have subsections within a popular disease community dedicated to older adults (who are likely to have co-morbidities, and may need to prioritize different things than younger people do). Providing geriatrics-trained moderators might be beneficial, especially in the early years.
I personally became interested in the idea of teaching geriatrics to the public back in 2008, when I was pursuing a quality improvement fellowship. I’d been studying quality measures, but when I discovered “e-health” (as it was called then) and a website for family caregivers, I dropped quality measures and started writing for family caregivers.
After all, who is most likely to notice the symptoms when an older person becomes delirious? The family members, of course. Now imagine if they knew more about what to do, and how to make sure their loved one is getting suitable management.
Obviously, it’s very important to improve healthcare quality by creating better systems and helping clinicians to their best work. And given the aging of the population, most clinicians need to be able to deliver geriatric care, meaning healthcare that’s properly modified for an older person’s needs.
But it’s also important to give older adults and their families the tools to be informed and proactive. To help them become participatory patients who are better able to voice their needs, can recognize when healthcare isn’t a good fit, and know how to access information on what “optimal” healthcare might look like for their condition.
Today, HealthInAging.org and N
Meanwhile, AARP covers the recent news on hypertension management by interviewing vascular experts about the JNC guideline controversy. I really wish they’d also interviewed geriatrician Mary Tinetti, whose recently published study on falls and blood pressure medication is the kind of information that is very relevant to the healthcare of older adults.
There’s a lot to be said for participatory medicine, and for helping patients – and their proxies — become better informed. So let’s not just teach geriatrics to all healthcare providers. Let’s teach older adults and family caregivers as well. After all, they are the most important members of an older person’s healthcare team.
Please join me for #HCLDR weekly tweetchat on Tuesday May 6, 2014 at 8:30pm Eastern (for your local time click here) as we discuss the following topics:
- T1: What are the barriers to older adults and family caregivers adopting a more “e-patient” approach?
- T2: How can we foster more online communities where aging adults and/or family caregivers learn practical geriatrics?
- T3: What can we do to bring more attention to geriatric medicine / healthcare for older adults?
Society for Participatory Medicine
“Family Caregivers are Wired for Health”, Fox, Duggan and Purcell, Pew Research, June 30, 2013 http://www.pewinternet.
“New Blood Pressure Guidelines Draw Fire”, Candy Sagon, AARP Bulletin Today, March 2014, http://www.aarp.org/
“Medication to Treat High Blood Pressure Associated With Fall Injuries in Elderly”, Mary E. Tinetti MD, JAMA International Medicine, http://media.
” Blood pressure medications linked to serious falls: What you can do”, Leslie Kernisan, http://drkernisan.