Patients want to be more involved in their healthcare, but it’s not an easy process. I’ve written before about the hurdles we have to overcome to get some healthcare providers to communicate with us, to listen to what we have to say about our medical problems, and even to return our phone calls. The problems extend from the top down to the receptionist and other non-medical office staff.
A group that represents 154,000 doctors has recently announced that it’s taking steps to try to improve that situation. The American College of Physicians has drafted a set of “principles” aimed at creating “partnerships” between doctors, patients, and families. They say these can result in cost savings, better use of healthcare resources, fewer tests, and better patient satisfaction. Most importantly, the ACP believes that following these principles can improve safety, reduce harm, and improve treatment results for patients. .
The four principles are:
- Patients and families should be treated with dignity and respect.
- Patients and families should be active partners in all aspects of their care.
- Patients and families should contribute to the development and improvement of healthcare systems.
- Patients and families should be partners in the education of healthcare professionals.
The principles suggest some specific actions, such as using language that a patient can understand and working with patients to develop “a shared agenda” for visits.
That all looks good, but in the real world …
A neighbor recently told me that his daughter was diagnosed in November with functional neurological disorder (FND), a serious and perplexing combination of several neurological problems. This man’s wife died about two years ago after suffering with primary progressive MS for 20 years. As you might imagine, he and his family are upset, concerned, and nervous — but those feelings were eased somewhat when they were able to obtain an appointment with an FND specialist at the Mayo Clinic in early December. But…..not long after that the clinic postponed the appointment from early December until January, leaving this family and their worries in limbo through the holiday season.
On social media, I recently read about a woman who had just moved to a new state and who ran out of her oral MS medication. Her new neurologist wouldn’t renew the prescription without seeing her and wouldn’t be able to see her for three months.
Another woman with MS complained about her neurologist “dodging” her after offering some advice the patient questioned. Every time she calls the doctor’s office, she’s put into voicemail and the calls aren’t returned.
Walk the walk, don’t just talk the talk
“ACP’s principles position patients and their families in their rightful place at the center of care in partnership with their health care team with the goal of improving outcomes and satisfaction,” ACP President Ana María López said in a news release announcing this project.
The ACP’s efforts should be commended. We patients want and need better communications with our healthcare professionals. But those professionals need to actually walk the walk.
“Principles” and “partnerships” and “improving outcomes and satisfaction” sound great when you’re viewing something from 10,000 feet. But they’re just lofty goals unless there’s actually buy-in down here on the ground — by practicing physicians and their staffs. I’ll get excited when I stop hearing complaints about calls shunted to voicemail and I start to hear stories about doctors putting their patients first.
(A version of this post first appeared as my column on the Multiple Sclerosis News Today website).
Photo by Martin Brosy on Unsplash
A huge problem I’ve encountered is the doctor’s office being incorporated into another entity. When @##%%^+ Health took the reins from my neurologist office I became invisible to the doctor. They don’t even have a phone number anymore. Back in ’97 when diagnosed until 2017 I could at least call. All of that is over and I’m to the point of giving up on having a neurologist to treat my multiple sclerosis.
I suspect that problem is only going to become worse, Paul. It’s obviously going to have a direct impact the quality of our healthcare. This happened to me with my dermatologist but, obviously, he’s not a critical part of my healthcare system. Fortunately, I have a very good neuro who is knowledgeable, compassionate and accessible. It’s the trifecta.
I was diagnosed a little over a year ago, and I have to say that I’m lucky to have an amazing (world renowned) MS Specialist caring for me. She is very much involved with the new Shared Decision Making way of practicing for MS care. I’ve recently filmed two docu-series regarding the subject along with her that will be shown at MS Conferences, to Neurologists, etc. Being newly diagnosed, I don’t know what to expect from this disease as I have been asymptomatic thus far (aside from my initial symptoms). So she’s been really understanding and compassionate, as I feel like I call or email her regarding weird sensations, and other random questions that I may have. She’s always very responsive and calls me herself vs having her office staff get back to me. I also agreed that communication is a two-way street, and patients need to hear the good along with the bad.
Regina
Hi Regina,
Your neuro sounds just like mine. I feel very lucky to have her as my partner in dealing with this disease.
Everyone’s MS path is different, as I’m sure she explained. I hope yours is an easy one.
I’d love to see the videos the two of you have produced. I’m retired after spending over 30 years with the Broadcast Division of AP, so I’m interested as a professional as well as a patient.
Ed
This problem of lack of patient involvement is a very real problem in the UK NHS. Any attempt to become involved in treatment or care is rather obviously very unwelcome.
I’m sorry to hear that, Morris. I do know, from reading some other MS blogs, that some medical professionals in the UK understand that patients really need to partner with their doctors. I hope that mindset spreads.
Ed
This problem is real and very sad. I’ve had many personal experiences, but seem to be in a good place with doctors at the moment.
Thanks for taking the time to comment, Lisa. I’m glad you’re able to communicate well with your docs and I’m very glad that I’m able to do the same.
Ed
This is a good posting. I have had excellent service from some and indifferent to incompetent from others. I’m in the process of firing my neurologist and getting a new one in June.
I have had rude service from one local pharmacist. The others in the branch of the chain are great! I will report this to the company. We have to keep on top of them.
But it’s also important to tell them when they are doing it right. When my doctors do it right I always tell them. Sometimes they look surprised to get positive feedback. Try it out!
Thanks for your comments, Allan.
I’ve been fortunate to have had nothing but excellent physicians for all of my MS life. I’ve only had 2 neuros since being diagnosed in 1980 and #2 and I have been treatment partners for over 25 years.
Communication is a two-way street and, as you say, we need to tell people about the good as well as the bad.
Ed