EMRs, EHRs...have been all the buzz in the healthcare world for a while now, as well as a regular part of the conversation about healthcare reform--though it gets much less press than the divisive hot button issues. Like everything in health care, personal issues and concerns make it hard to come to good solutions. And, like much with health care, until you have a problem or encounter with "the system" most people don't think or care much about it. Then, when you are at the E.R. and can't recall you last surgery date or name of that medication you take...it hits you what all the buzz is about.
A lot of individual doctors, hospital systems, etc. are ramping up their technology and have gone electronic. One of our local hospital systems even uses a "hand scan" to identify patients and pull up their records. However, because there is no centralized, unified system, the issue really hasn't been addressed comprehensively. We're all so mobile now that only something universal/web based really solves this issue. But, there are of course the usual confidentiality and privacy concerns, and the logistics of making it all work together. And as healthcare is currently delivered, it is a pretty fragmented system (just spend some time talking to a doctor's office about billing and dealing with 100s of different insurers, Medicare, Medicaid, Worker's Comp, "cash" patients...), adding to the challenge. Not that I'm suggesting we should have one unified system of healthcare (don't want to start that firestorm here--that's enough for many entire blogs and there are plenty out there arguing and addressing that issue), but as that discussion continues, this particular issue is clearly part of the picture.
Even though I live and breathe it every day in the work we do, it does take the personal experience to really drive this home. As I prepared for summer travels a while back, it really hit me. We create these great secure, web based records for our clients, and I don't have one for me! Our clients and their representatives (usually us and maybe their primary caregiver/healthcare surrogate) have easy access to all their information--no more guessing on those surgery dates or trying to recall that medicine. And, wow, my healthcare surrogate paperwork is right here to print out no matter where I end up in the hospital--even if its across the pond. True continuity of care!
The program we use, Life Ledger, is very robust since it was created by people in our field who deal with these issues daily...so it includes "Discontinued Meds" so that you have good background when working with doctors on new medications, what hasn't worked in the past, etc. And, it has room for "non health" stuff that is often key, like funeral plans, who to contact in different situations, and who are my key advisors, such as my attorney and financial planner. I'm working on learning more about the products by Microsoft and Google and seeing what other systems are out there too. There isn't one that's perfect yet, but the way technology moves, it could happen tomorrow. Implementing anything system wide...well, that's a different story. So, for now, I'll create my own and continue to do so for our clients so that we're ahead of the game and not waiting on that to happen...
I recently attended a "Virtual Dementia" experience, created to simulate what life might be like for a person with dementia. It sounds strange to say I highly recommend it, but I really do. It really provides a greater awareness, even though one can never truly mimic what an individual may experience. This session was similar to an experience I provide to my eldercare students and occasional professional trainings. It is an "aging simulation" kit which mimics conditions like glaucoma, macular degeneration, hearing loss, stroke, and arthritis through a series of hands on activities.
This dementia experience really combined all of those sensory deprivations to create a sense of confusion and fear, while giving you the pressure of completing tasks and having somoene else in the room with you, so that all your fears were heightened. Of course, many people with dementia do not have all or any of those particular sensory issues or conditions, but the overall feelings seemed likely to mimic how people must feel. And, how it feels to have someone tell you to complete a number of complex (things we think are simple, but really involved much complex processing) tasks and feel completely overwhelmed and frustrated by this. I recall feeling frustrated that I was not the capable person I identify myself to be. Another participant, said "I just wanted to lie on the bed and curl up in a little ball and go to sleep". Others expressed "paranoia", thinking the other person was playing a trick on them, as is often expressed by people with dementia. Everyone felt very disoriented and somewhat fearful. I noticed I startled very easily and yearned for a friendly face. We all could imagine how nice it would have been to have someone come and comfort and guide us gently through the situation.
Interestingly, like persons with dementia, we all had slightly different experiences and reactions. We each brought our own history, experiences, strengths and weaknesses to the moment.
For professionals, family caregivers, and anyone these types of exercises are so useful. Too often, I encounter professionals, even those who regularly work with seniors, who forget the basics of sensitivity and empathy (and I'm sure I'm not perfect either, especially on a rough day). I recall doctor visits where the doctor spoke to me and virtually ignored the patient/client, until I prompted otherwise. Other times, I've seen people raise their voice to no avail with someone hard of hearing or assume the person has dementia when they are suffering from hearing loss or aphasia. The sensitivity exercises are good reminders for those of us with the training and background as well.
During this exercise (while waiting on each other to go through it) we also watched a very well done video about a lady with Alzheimer's Disease and her daughter. It fit well with the exercise because she talked about her frustrations and realizations as she learned more about the disease and her Mom's experience of it. She tried various techniques to deal with her Mom's constant phone calls and obsessions over certain issues, until she realized many of the things she was doing were only exacerbating the situation. She was surprised at the peace her Mom felt when she was in an environment designed specifically for dementia. She learned to let go of some of the expectations and preconceptions she had. She realized at one point her Mom was truly a person living absolutely "in the moment".
If you ever have a chance to participate in one of these experiential exercises, do so. There are some resources on the web to put together your own "aging sensitivity" kit as well.