If you know me, you know this is a topic near and dear to my heart: my MPH master's project was a blog meant to teach caregivers key geriatric principles, I published a qualitative paper on information-seeking at a caregiving website, and I've spent the last four years collaborating with Caring.com, because I think empowering and educating caregivers is one of the best ways we can stimulate improvements in the quality of care for frail elders.
And of course, I'm now on the prowl for technologies that improve geriatric care, such as those that help elders and caregivers do what needs doing healthwise (they have so much to do!), and that foster effective collaborations with clinicians such as myself.
What did I learn from listening to TEDMED's team of thought leaders in caregiving?
Three things really stood out for me:
1. This team thinks it will take years for significant change to occur, as in at least a decade.
This may be true, but it's a sharp contrast with the predictions in the healthcare innovation community, where people are predicting disruptive healthcare change coming to a hospital and clinic near you, and soon.
I'm not sure who will be right. Technology and the democratization of information have changed many things fairly quickly. If patients and caregivers get better access to health information in the next few years (and get some coaching on how to use this info), that could have a very good effect in helping healthcare reorient towards the needs of patients and caregivers. Plus there's a big move afoot for patient engagement. Won't that change things soon? (Especially if it's paired with a push for better clinician engagement?)
The team also talked about the influence of money and reimbursements. Well, there's another arena that's under unprecedented pressure to change. How soon is that change coming? Hard to say and depends who you ask. So even though healthcare has historically changed rather slowly, I wouldn't be surprised if things look very different in five years.
2. The video chat had relatively little emphasis on any existing pockets of effective clinical collaboration with caregivers.
This was a bit of a bummer to me, as I'm a believer in the Switch approach of identifying bright spots and trying to find successful strategies to replicate.
Now, I know that the overwhelming majority of experiences caregivers have with healthcare is negative. (My own father, at age 61, became critically ill and eventually died during my third year of medical school: I've faced the squad of white coats in the ICU and it sucks. And no, we weren't offered palliative care or the help we needed, and I still feel upset when I think about my family's experience.)
But surely we can find some instances in which caregivers are having a better experience. For instance, we all can think of some primary care doctors who are exceptional at getting to know the whole patient, and integrating caregivers into their work. And there must be some specialty clinics that have found ways to offer better support and education to caregivers.
Alan Blaustein also brought up the point that in his experience, even the best intentioned clinicians can't take the time to see the 360 degree picture of the patient.
Guilty as charged. (Which is why I left my community health center job; too frustrating to always be rushed.)
But why not talk to some of those well-intentioned doctors, and learn more about what might make better listening more feasible. Sure, reimbursements and money matter and who knows when those will change. Still, I'd love to see this team dig in a bit deeper and engage with some clincians who practice in time-pressured settings but are yearning to do better. Or invite an academic who studies clinician-family communication, or better yet, someone who's been involved in an effort to improve the family experience in a clinical setting. (I know I've heard of some exciting innovations to make clinical care more person and family-centered; can someone provide an example?)
3. There was little on innovative technologies that can help caregivers.
This surprised me, but this probably is because I've been personally so immersed in learning about tech to improve geriatrics that I must be assuming everyone thinks this is as important as I do.
Obviously, covering tech innovations for caregivers could be an entire university course. Given that this challenge is titled "The Crisis in Caregiving," which is an even broader topic area, the team presumably isn't able to dig into any sub-topic that's too specific.
That being said, technology is one of the areas that I'm personally most optimistic about, in terms of fostering positive changes for caregivers. For example, a fellow geriatrician, Elise Singer, has developed a tool called ShareTheVisit. It's technology that enables family caregivers or others to videoconference in to another person's medical visits. This is a great concept, since it's often logistically hard for family caregivers to participate in medical visits due to work or other responsibilities. (Disclosure: I have no current or planned financial relationship with Elise's company.)
But what's even more exciting to me is that some large medical providers are seriously considering purchasing licenses for ShareTheVisit, which would make it easily available for their providers to use with patients and families.
This I find huge, extraordinary, and fantastic. After all, it's one thing for me, a single tech-oriented geriatrician interested in caregivers, to want to pilot a new tool to better collaborate with caregivers. It's a much bigger thing for a large provider of medical services to take this concept seriously, and be willing to pay to provide this service to patients and families. Let's not get carried away, but really, could we be on the verge of a sea change in how healthcare systems treat patients and families? Let's hope so.
In a nutshell:
Caregivers are essential partners in providing care to elders and others. The country should absolutely do a better job of supporting their needs.
TEDMED's recent Great Challenges videochat reiterated many of the common challenges facing caregivers.
The team seemed less optimistic about change coming soon than I would've expected.
Better engagement of caregivers will undoubtedly require better engagement from clinicians. It would be interesting to me personally if this team could highlight existing bright spots in clinician-caregiver-patient collaboration, and help identify strategies that could be replicated or scaled up. Bonus if this process uncovers some promising technologies or tools that can facilitate this.