The Burden of Getting Medical Care Can Exhaust Older Patients

Posted by Miriam, Volunteer Mentor @mir123, Apr 16 9:03pm

I found this article very thought provoking, and wanted to share it. Have you experienced what the title says--getting exhausted just from setting up appointments and following treatment plans? And on a more positive note--do you have any tips or systems you can share?

https://kffhealthnews.org/news/article/medical-care-exhausting-older-patients/

KAISER FAMILY FOUNDATION (re-print from Washington Post)
NAVIGATING AGING
The Burden of Getting Medical Care Can Exhaust Older Patients

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I am a nearly 76 year old woman. Yes, I can definitely relate. At times I just want to say "to hell with it"

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I have no such experience, although I can understand and sympathize that some find it overwhelming, slow, tedious, repetitive (multiple forms to complete, often telling the form holder the same details numerous times), and often just confusing. In my life, I got used to 'the grind' where I figure it out, and enlist the help of others, or appeal to the good will of the offices with whom I must contend, or otherwise found out what I need to know and just begin a methodical grind, even if it took multiple trips and visits, and inquiries. For we older folk, it constitutes an invasion of privacy at the least, but also a change in what is usually a welcome and familiar routine. It means keeping track of appointments, taking notes, remembering where the notes are, or how to read them.....oy!
I use my smart phone and the apps on my smart watch to keep me in the flow and in the know. I use the calendar for reminders, and since my watch is Bluetooth linked to my phone, it will buzz me on my wrist and show me what I must do if my phone is not near me.

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Useful ideas--both practically and in terms of emotional understanding. I've noticed I often do better if I first tell myself it IS going to be boring and frustrating, then call upon my patience!

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Thank you Miriam, for this excellent article. I have pinned it on our bulletin board of my seniors apartment!

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@thisoldewe

Thank you Miriam, for this excellent article. I have pinned it on our bulletin board of my seniors apartment!

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You are welcome! I have to credit my husband, a former reference librarian, who always forwards interesting health articles to me.

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I was healthy until age 80 when I was diagnosed with lung cancer, and heart issues (I am 82 now). Then tracking my health issues became a part-time job.
And now my health record is so long and complicated that my doctors have difficulty in staying up to date on me.
Fortunately, I have excellent computer skills given my past career. I run my life off of my computer from ordering groceries online, paying bills, to researching my conditions.
I try to help friends and family in my age group (and younger people even!), but some people just are not comfortable with the technology.
Patient portals can be an excellent resource, but some practices have very poor portals - maybe they didn't want to spend $$ to do it right? I check-in online so I don't have to wait in the office.
I would make a suggestion to doctors. When I go in for an appointment there is someone who first interviews me and then the doctor comes in. It is hard to stay focused at an appointment. I would like to have a form before the appointment where I can report relevant symptoms, changes, concerns etc. I would update this form each time I go in for an appointment.
I have noted more than once inaccuracies in the Doctor's notes and they don't always document in their notes what they told me.

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@vic83

I was healthy until age 80 when I was diagnosed with lung cancer, and heart issues (I am 82 now). Then tracking my health issues became a part-time job.
And now my health record is so long and complicated that my doctors have difficulty in staying up to date on me.
Fortunately, I have excellent computer skills given my past career. I run my life off of my computer from ordering groceries online, paying bills, to researching my conditions.
I try to help friends and family in my age group (and younger people even!), but some people just are not comfortable with the technology.
Patient portals can be an excellent resource, but some practices have very poor portals - maybe they didn't want to spend $$ to do it right? I check-in online so I don't have to wait in the office.
I would make a suggestion to doctors. When I go in for an appointment there is someone who first interviews me and then the doctor comes in. It is hard to stay focused at an appointment. I would like to have a form before the appointment where I can report relevant symptoms, changes, concerns etc. I would update this form each time I go in for an appointment.
I have noted more than once inaccuracies in the Doctor's notes and they don't always document in their notes what they told me.

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Good points!

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I recall 20 or more years ago, just after managed care was getting off the ground and health care was changing in a very negative way. I had nothing serious to see docs about, kept up with annual visits/procedures. Other than that, thankfully I did not visit docs much. I did begin noticing that they were rushed and their offices more overcrowded than usual. One ortho, who I was seeing for the first time for pain beneath the shoulder blade, basically slid out of the room after about 5 min, talking to me while in the doorway as I struggled like a fool to ask the few questions I had.
A couple of months after that, I read an article in the Washington Post Health section written by an internist in N Va, He went on and on about how docs had to overcome their anger and frustration with the health care system and remember why they were docs. He encouraged readers to take a list of questions and ask every last one to their satisfaction. I thought, "This guy is great. I wish docs would find a way to relax and take a little more time. What if I or one of my fam members has a serious illness? Is the doc going to throw me out like the ortho did?"
About a year later, I sat in the exam room with a highly respected endoc I had decided to see. I thought perhaps my lifelong anxiety was a result of a endocrine issue. She yakked and yakked and yakked about the evils of managed care and how she was starting an advocacy group of her peers to try and legally push back on HMO's, etc. How unfair it was to DOCS. Not a word about patients.
Of course, since that time, docs have changed greatly. I understand their complaints. I have watched, for example, my cardio change from a lovely, caring gentleman (20 + years ago) into a still OK person who is very smart and clinically could be among the best. However, with his patient load, far too heavy due to the demands of insurance and personal financial gain of the large cardio group he's with, he's not able to care for me the way he used to. It's very frightening. And all of my docs are like this.
They are doing what's best for THEM. The humanity is GONE.
This article inflamed me. It's even worse than the WAPO article from 2 yrs ago in that after 2 very scary stories that only make me wish there was a Kevorkian on every corner, she goes into the same "fixes" from the WAPO article of 25 years ago:
Ask your questions....(sure)
Request help with coordination from the dr's office (not gonna happen)
Get your meds reduced - I am ALL for that, but docs are going to be hard pressed to do this because meds usu
come from many other docs and *that* is complicated.
Etc, ad nauseum.
Things are only getting worse. I am tired of feeling like I have to kiss my docs' rings. They provide a service they chose. They accepted and signed an oath and damned few of any I know are fulfilling it. I try to be a "good" patient and they take advantage of it. The outspoken patients get the grease and the rest of us get the short straw.
More and more, if you haven't noticed, are opting out of Medicare. One doc told a friend of mine she could have the "Medicare" checkup or pay for a real one.
Do I have to use my savings for a boutique doc or is my plea for thousands of Kevorkians the only way? I won't spend the rest of this life feeling like my doc wishes I would just die because it's too much trouble to deal with an older person's issues.

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@mir123 Great article, and it does indeed address many of our concerns as an older population!

Things that have worked for me:
- Write it down! I don't like apps. I keep a notebook that goes to each appointment, writing down questions, answers, vitals, etc. You can't be too proud to rely on a support system that works for you.
- Keep a calendar with appointments and calls. I don't hope my memory will be enough, because it is sure to fail me at some point. In fact, I have a small calendar in my purse, and a more expanded one at my desk at home.
- If you cannot understand what is being said to you, ask for written. This will allow you to digest information on your own timeline.
- Try to coordinate your appointments, if you need to travel any distance for them. I am usually able to do this, and you'd be surprised at how helpful staff is in helping you get this done! Fewer trips, less stress, fewer miles.
- Enlist the aid of patient navigators when you can, or need to. If you feel you aren't getting answers to your concerns, or are being neglected, get them to help you! As a patient you deserve the best care possible.
Ginger

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Hi Ginger,
this is hugely helpful--and great systems. I use a paper calendar, little notebook etc. I once had a millennial student who always had a beautiful paper day planner--she made it look hip!

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