Apparently, a new profession of the “patient advocate” has sprouted:
Some advocates have minimal medical training; others are nurses and doctors. Some charge nothing; others thousands of dollars. Some advocates might help save your life; others may complicate patient-doctor communication.It’s so early in the life of this new profession that it’s not entirely clear what an advocate is or how to judge whether you’ve found a good one. There is no regulatory body that oversees or licenses patient advocates, just some people, companies, and, now, colleges that see a need.
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Hi Kevin: Great article on patient advocacy! In some situations, it may actually be a beneficial concept.
Now – putting that aside, for a moment, does the advocate get to join in the hallway discussion, between the intensivist and GP,as to when that renal dopamine becomes a little too chronotropic given that ‘Joe Blow’ has a 90% occlusion of the LAD with poor diastolic function?
Oh well – nobody is perfect when it comes to complex decision making.
Listen – I`ve got a great idea. How about we start a medical liability company to insure patient advocates against impending lawsuits.
William Mangino M.D.
It is a sad comment on the state of contemporary medicine that patients need to have an advocate to communicate with their doctor. Unfortunately, all too often it is necessary.
I spend a lot of time dealing with the doctors of friends and relatives. Care tends to improve dramatically when a physician knows that another physician is watching. Sad, but true.
MORE ABOUT PATIENT ADVOCACY
Back in 1983, when I was an anesthesia resident at Jefferson Hospital, in Philly, I was called to the neuro ICU by the nurses to check the position of an endotracheal tube in a patient on ventilatory support.It was the third such call in a 48 hour period.The third time around it was my turn.
The patient was awake, elderly and emaciated – but most importantly – had some stubble on his face in the form of a fledgling beard. He was obviously scared. I would be too.
The tape holding the tube was not adhering well to this facial growth – which is not unusual.For that reason alone it was slipping out of place.
I had a couple of medical students with me, during an otherwise very busy day.
After explaining to the students and unit nurses why the tube was malpositioning, I took the 10-15 minutes to shave the patient, dry his face, and apply some benzoin – after which I carefully re-taped the tube at the proper level; just above the carina.
We also got to have a nice interlude with the patient, made him smile, and gave him a great shave.And it gave me an excuse to step outside and grab a cigarette, on the way back to the OR.
The students learned, by example, that the practice of medicine sometimes included doing the simple caring things that often made a difference in how patients felt.
Most doctors and nurses, along with other members of the hospital staff’s are advocates in subtle day-to-day ways for their patients.Even people who clean the floors and serve meals and walk patients around are de-facto advocates.
There are lots of little things members of the health care team do to contribute to patient well being-and most doctors enjoy taking a little time to talk to families and friends.
We all like to “Bring air and cheer into the sick room,” as the ditty goes. And often, “Though not so often as we wish,” we bring healing.
Best wishes,
Dr. Bill Mangino
“does care get better or does communication get better?”
I’m sad to say it, but often both get better. Just one example: a dear friend called me weeping after being sent home from the ER for severe abdominal pain, radiating to the back. She is in her 40s, a bit overweight and had a known history of gallstones. The ER physician (at a very prestigious Boston hospital) made her wait 7 hours, examined her, drew some labs and told her nothing was wrong.
It was obvious that she was in severe pain. I advised her to go back, give my name (I had worked there in the past) and tell them that I insisted she have a serum amylase drawn. Sure enough, she had gallstone pancreatitis. She was operated on later in the week.
Unfortunately, I have many, many more examples that I could relate. Sometimes, I have to call the doctor, occasionally I have to go in with the patient. Usually it only takes one such intervention per patient. After that, their care tends to be top notch.
“We generally don’t have an extra 15 minutes to talk to each patient’s family every day.”
I understand that type of situation, but it is important to recognize that that represents an extremely serious problem. The 15 minutes that is a burden for you is often the complete amount of explanation for the patient. That’s it 15 minutes to understand what is going on and what to do about it. For many people, particularly because they don’t speak the jargon, it isn’t nearly enough time. They walk out frightened and without a clue as to what is going on. Often they don’t understand what the treatment is or how to use it. Their care is compromised before it has even begun.
A couple of years ago, a friend begged me to go with her to her oncologist appointment. She told me that she could not understand what the doctor was saying. I found that a little hard to believe since everyone was speaking English, but she seemed so upset that I agreed. We went to yet another prestigious hospital where her doctor reviewed her PET scan (”mediastinal lymphadenopathy” she told her) and the conclusion was that the cancer had “recurred”. She now had “stage IV disease”.
My friend looked at me with incomprehension. I turned to the oncologist and said, “Tell her again, but this time tell in language she can understand.” She was annoyed, but she did it (”you have lymph nodes in your chest …”).
This stuff happens all day, every day, and it shouldn’t.
1. Give the diagnosis. (Use the real medical language. You may need to explain that Mini Medical School follows.)
2. Tell them what it means (Mini medical school happens here. When the patient with mediastinal lymphadenopathy leaves the office they should know what that is and how to explain it to others in the family. Do it right each time and you have happier patients who do better.)
3. Tell them what to expect. (Predict the future. This is all that doctors did back in the day before there were any effective interventions. We still need to do this.)
For a patient (or anyone) to understand a medical condition you must bring the patient’s knowledge regarding the condition up to par. Docs use medical language because it is exact. “Layman terms” are not exact and do not convey knowledge. Teach the patient. It pays off well.
An old ER doc
And what about you, Dr. Kevin: do you see the need?
In my experience as a patient, the patient advocate is really the hospital advocate . . .they are merely CYA people.
FYI, I blogged on this topic on May 1 as well! lol
http://difficultpt.blogspot.com/2006/05/patient-advocate.html
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