Tuesday, May 02, 2006

Why we need patient advocates

Kevin MD mentioned the new profession of patient advocate. It is an indication (as if we needed more indications) that the healthcare system is falling apart.

Most doctors might not recognize the term “patient advocate”, but they’ve probably already fulfilled its function many times for relatives and friends. If you’ve ever informally evaluated a relative’s care, called the doctor of a friend for a clarification, or suggested to someone that they ask their doctor for a specific test, you have acted as a patient advocate.

Theoretically, there should be no need for a patient advocate, since doctors, by the very nature of their job, are already advocates for their patients. Unfortunately, the need for a patient advocate arises all too often, because patients don’t understand their diagnosis, can’t figure out their treatment, don’t comprehend the results and implications of tests, can’t get their doctor to return phone calls, etc. etc. In my experience, there are several reasons for this.

First, doctors are extremely pressed for time. When you know that you have a waiting room full of patients, it’s very difficult to engage in an open-ended conversation with one patient. It’s much easier to announce the results or diagnosis, pronounce the treatment and send the patient on his or her way. We are all pressure to be more “efficient” and it is very clear that insurance providers do not consider patient discussion to be efficient at all. They won’t reimburse for it, so obviously they don’t even think it is necessary.

Second, doctors often forget the impact of their words on patients, or that patients may not understand the explanation. The doctor might think she has gotten the job done, when the reality is that the patient was so shocked by the diagnosis that he could not hear or process the information that followed. Or even if the patient is listening attentively, he might not understand the language that the doctor is using. Unfortunately, many physicians have trouble modifying medical terms to straightforward English. I have seen this in clinical practice when doctors are rushed, but also in medical writing when they have ample time to choose words carefully. I have edited materials written by doctors specifically for patients. Even when I sent things back with express instructions to modify the language, some doctors just couldn’t seem to do it.

Finally, (and most depressingly for me as a doctor), many doctors are simply not paying attention the way they should. They don’t order the right tests, they don’t look at all the results and they don’t listen to what the patient is telling them. These doctors can often become very motivated and attentive when they realize that another doctor is monitoring a patient’s care, even if that other doctor is a relative or friend. Obviously, you shouldn’t need another doctor looking over your shoulder to force you to pay attention to what you are supposed to pay attention to in the first place. Sadly, it has become all too necessary with the advent of “managed” care.


Blogger Flea said...

Here's an idea: doctors' advocates!

Then the advocates can do the appointments and the patients and doctors can go get coffee and get to know one another.



8:49 PM  
Blogger Amy Tuteur, MD said...

Doctor's advocates? I wish.

When I talk about patient advocates, I don't mean the kind that are on the payroll of the hospital and exist to smooth over any problems with patient satisfaction. I am talking about people that a patient can hire to help them understand what is going on.

Did you read the recent Time cover story about what doctors fear about hospitals? I found it very true to my own experiences. Many doctors said that were afraid to leave the bedside of family members for fear of what would happen to them. I've had that experience.

Everyone needs a doctor in their family, but not everyone has one. The next best thing can be a good patient advocate. It's very, very unfortunate that it can be necessary for dealing with some doctors. I doubt any of your patients would need one, but I'm sure you know that every doctor is not like you.

6:59 AM  
Blogger Tom Leith said...

Maybe I'm missing something, but isn't one's PCP supposed to fill this role? What have you got in mind -- something like a hospitalist who isn't paid by the hospital? Someone who's there all the time, not like my doc making rounds once a day (preferably in the late afternoon [grin]). But what does it say about professional ethics if we can't deal with this particular conflict of interest? Conflicts of interest are rampant in medicine and any other professional/client relationship...


10:40 PM  
Blogger Amy Tuteur, MD said...


"Maybe I'm missing something, but isn't one's PCP supposed to fill this role?"

No, a patient advocate is someone who helps you deal with your own physician, PCP or specialist. By the way, I am NOT referrring to "patient advocates" hired by the hospital and paid by the hospital. I am referring to professional patient advocates hired directly by patients and working solely for them.

Patient advocates can provide a variety of specific benefits:

Most patient advocates have medical training and some are doctors. Knowing that another medical professional is watching over a patient's care often makes a provider more careful.

Patient advocates can interpret complex medical information for patients. Some doctors simply can't or won't explain things in a way that a patient can understand.

Patient advocates can transmit important information back to the physician in a way that the physician can understand. Patients, often because they are upset, have trouble communicating their needs or getting to the point. Since patient advocates have medical knowledge, they can sift out irrelevant information and quickly provide the doctor with an effective summary.

Patient advocates can brainstorm with the physicians in a way that the patient cannot. My sister-in-law went to the ER for severe abdominal pain radiating to her back. She had a known history of gallstones. They made her wait 7 hours, examined her and sent her home. She called me, still in severe pain. I told her to go back to the ER, tell them she had talked to me (I had worked at that hospital in the past) and ask for a serum amylase since I was wondering if she might have gallstone pancreatitis. Sure enough, the amylase was elevated, she did have pancreatitis and had her gallbladder removed that week. I was acting as a patient advocate.

12:01 PM  
Blogger Sarabeth said...

I would agree that this is a good idea for some patients--maybe not day to day preventative care.

My own example is when my father-in-law was diagnosed with cancer. The oncologist wanted to find the primary tumor. Both an upper GI and a lower GI were ordered. A day before these tests were to occur I was transporting his medical records from the local hospital to the hospital where he was to receive treatment. I was stuck in really long traffic and happened to read the radiologist's note on the top of the file. He had noted a slight thickening of the stomach. That was the primary tumor as visualized by the upper GI. If I had not noticed that my father-in-law would have had a test performed that he didn't need.

9:20 PM  
Anonymous Anonymous said...

I wasn't sure where to post this, however, I guess I just need to vent. My best friend was recently in an automobile accident. She was driving down a street shortly before Christmas when another car suddently pulled out of a parking lot. She couldn't avoid hitting him, and the other driver was cited for failure to yield the right of way.

She went to the closest ER to get checked out. They looked jer over, did x-rays, and told her nothing was broken, that her chest and back pain would take time, and that she should follow up with her primary physician.

My friend has a history of blood clots, and with the chest pain intense and not diminishing she went to her primary telling her that she was concerned because of her past history of blood closts. Her physician then forcefully told her, "If you were so concerned about blood costs, you would have stopped smoking by now." My friend who had now spent 2 weeks worrying about chest pain and having sought her physician for help, promptly was reduced to tears. She asked if maybe other tests should be done and was told, "no, it will just take time." She started seeing a chiropractor for the back pain, and another week went by. Still no relief at all with the chest pain.

She again called her primary's office and voiced her concerns. She was asked to come in for another appointment, and this time, the doctor ordered a D-dymer test. She had it done, and left the clinic. Shortly thereafter the primary was calling her telling her to get to the nearest ER, because the test was elevated to a 4.5, when it should not be any more than 2.1.

She went to the ER again, and after 7 hours there, EKG's, blood work, and a CT, they finally found her problem. A fractured sternum. The primary called her the next day, stating, "you must be tired today." (Yes, after going to bed at 1:00 a.m. and then going to work). The doctor stated, "well, you should be relieved now, because they didn't find any blood clots." No caring remark, like "I'm sorry you broke your sternum. That can be very painful, etc." Nothing. Is my friend ever going to see this physician again? Absolutely not. Nor am I (she was my primary also). What is wrong with this? Can someone tell me why some doctors have become so cold, so uncaring? Do you need to shop around forever to get quality health care these days? I am a 57 year old professional who has become so disheartened with the medical profession. I work as a legal assistant at a highly respected personal injury firm, and I see this every day. I guess I would just like some feedback. Thank you.

By the way, the primary would not follow up with my friend on the elevated D-dymer test as the hospital told my friend to do. The primary said if she had shortness of breath.. she should call. Please! Now my friend is going to her cardiologist for some answers.

9:44 AM  
Blogger Linda MacDonald Glenn said...

I have had to play the role of patient advocate with a number of family members undergoing serious medical procedures -- and it does seem sad that people have to hire a patient advocate, especially since not everyone can afford one. Here's a thought -- maybe starting up a nonprofit dedicated to the role of providing patient advocacy?

9:32 AM  
Anonymous Chuck McKay said...

There's a nice young doctor who has been hired by the clinic a block from my home. My wife and I have seen her exclusively since moving to my new community.

Recently, she's become very inflexible. My wife was sent out of town for two weeks by her company, and ran out of her thyroid medication. She attempted to get a refill, and was told there were none left on the doctor's prescription.

I phoned the doctor to ask for her to phone in a new prescription, and was told my wife would have to come in for another physical before the doctor could issue the scrip.

However, there would be no available appointments for the next three weeks. I asked if they didn't stay open until 8pm on Tuesday, and was told, "Yes, but we're booked until 7." I said, "Fine, put my wife down for 7:30." After checking with the doctor the receptionist relayed that the next available appointment was three weeks away.

Her health wasn't desperately threatened, but we decided to find a doctor who was more concerned with her patients' well being than the timeclock.

8:35 PM  
Anonymous Anonymous said...

More, perhaps, is the need for health care advocates. NP Alliance (www.npalliance.org), for example, is a group of doctors that exceed 10,000 that strive to change things for the benefit of public health. Community Catalyist is another one.

8:02 AM  

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