These Doctors Have the Right Idea, but …

Ed Tobias avatar

by Ed Tobias |

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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 nonmedical 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 just 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. A day or two ago, however, my neighbor learned that the clinic postponed the appointment until January, leaving this family with 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 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.

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goatgal avatar


This is a widespread problem. Before moving from one state to another, my MS neurologist gave me a referral to another physician who was part of a MS specialized clinic at a major university. I was given an appointment there and seen by two doctors, both of whom left the clinic. My next appointment was scheduled for a year from the last visit (April 2019) with a neurologist new to me as well as new to the clinic. When I asked for a referral to a Neuro Opthomologist for distortions in my visual field related to my optic neuritis, I received no assistance and sought care outside the system on my own. I don't expect immediate responses to my on-going concerns, but some response would be welcome. Fortunately my PCP at the same large institution is very responsive, though I can only contact her through email.

Ed Tobias avatar

Ed Tobias

Unfortunately, you're right. This is why my wife and I travel 3 hours to continue using the PCP we've used for years and I travel just as far to continue using my neuro. We'd rather travel and continue receiving excellent care than start over with the unknowns in the area to which we retired.



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