“How can a patient, who does not know what meds she is on or why, seriously participate in ‘Shared Decision Making’?”
I apparently struck a nerve with several followers who replied with tweets accusing me of not educating the patient, wondering why she doesn’t know, wondering if she might be on too many meds [ya think?], etc. One response was from a software developer who likened doctors to technology professionals, patients to computer users and computers to medications. None of those who confronted me is a physician. I am not sure what types of front line experience with patient care they have had.
Let me clarify a few things.
I am certainly not against explaining things to patients. I believe they should understand what treatments they are agreeing to. My point was I think a substantial number of patients do not really understand things even when they are explained at length.
I was seeing the patient as a consultant. I am not her primary care physician [PCP]. The problem of patients not knowing what medications they take is very common. An informal poll of some of my physician colleagues reveals that as many as 50% of the patients we see in our emergency department do not know what meds they are taking, why they are taking them and they do not have a written list of current meds in their possession.
Many studies show similar results. Researchers at the Mayo Clinic found that patients discharged from the hospital had significant problems recalling the names of any new meds prescribed or their dosages. A study of patients seen in the emergency department at UCSD showed, “Only 48% of patients could recall or produce a list or the actual bottles of all of their medications, 39% knew the times they take their medications, and only 24% knew all the dosages.”
The PCPs and hospitalists where I practice take great pains to educate their patients on the need to know their illnesses and medications. They have all been instructed about the importance of this and the need to carry a list of their medications at all times.
They simply do not do it. Why not?
I don’t know but I have some ideas. I practice in the real world. Most of my patients are nice people who are very down-to-earth types. Some are on too many meds. Some are old. Some are confused as a result of their illnesses and/or their meds. Some are anxious. Some are mentally ill. Some are “all of the above.”
But [you won’t like to hear this] many just do not want to take responsibility for their own health. I think they don’t know their meds for the same reason they eat too much, smoke too much, drink too much and don’t exercise.
Go ahead and blame us doctors for not educating the masses. I say, keep trying, but don’t be disappointed when half of them don’t comprehend the importance of what you are trying to do or possibly just don’t care.
While I’m on shared decision making, I have this final comment. Physicians should not present three options with lengthy dissertations on the myriad side effects of treatment and no real advice as to what would be best for the patient. You cannot teach someone the anatomy, physiology or the nuances of medical care in a shared decision making discussion. How can a patient make a rational choice without guidance from the physician?
10 comments:
Totally agree that many people don't want to take responsibility for their health. But there's an aspect to this discussion that you haven't touched on: Just because the physician thinks he or she has explained things adequately doesn't make it so.
I sat in as the electrophysiologist explained things to my mother, who sat there nodding her head. Afterwards I asked my mother if she understood what the doctor had said. Her reply: "Not a word." And you know what? I didn't understand hardly any of it either, and I would bet that the average physician who was not an electrophysiologist would have been hanging on by his fingernails too.
Her problem? She could not imagine what other people don't know. She was a very nice doctor, and obviously cared about my mother, but she couldn't communicate.
For the most part, physicians have not been trained to communicate with patients, and being compassionate is not the same as being a good communicator, or being able to take complex information down to the level that patients can understand. Half of the words doctors use are not in the average patient's vocabulary. So you can't present a lot of complex information all in one gulp. As you point out, three different treatment options, all with competing risks and benefits, can't be absorbed by the average patient in one sitting.
Which is why patient decision aids are a crucial part of shared decision making.
Your point about the physician's advice is also well taken. That's why we come to you -- for your expert opinion, mixed with a good dose of beneficence. Unfortunately, different doctors have different opinions about the best way to treat the same patient. (See Jerome Groopman's description of getting five different opinions from five different hand surgeons in his book, How Doctors Think.) So how are we supposed to know which opinion is the right one?
Moreover, elective decisions should involve the patient's values. If I have early stage breast cancer, mastectomy and lumpectomy with radiation have the same mortality benefit, but very different effects on my sense of myself and my well being. This is a decision that should involve the patient's values, yet different breast surgeons prefer one treatment over the other, and recommend one or the other, without involving the patient's values.
So yes, it's good to value the doctor's learned opinion, but it's also important to remember that it's still just an opinion, which often hasn't incorporated a patient's preferences and values.
While I understand and support your position, what can be done? This strikes me as a deplorable situation that does not have a readily available solution. Moreover, this situation applies in nearly all aspects of the average American life. Many of the issues surrounding the economic recession, politics, and world events all stem from citizens' inability to take responsibility, learn what they need, and then take informed decisions (the fraud aspects obviously acknowledged). While medicine is the most important symptom with the most personal potential fallout (e.g., negative reaction between medicines during surgery), I see this everywhere in our society. And I worry...
I think a patient in a doctor's office or emergency room is virtually always stressed, whether they show it or not. People under stress absorb information badly. Their brains are too busy with the emotional ramifications of whatever you tell them to really fully process all the facts and details. My dad made it his policy to always tell his patients everything twice, but I doubt if even that is sufficient. Giving it in writing might help, but even if they read it when they get home, their stress is likely to rocket the minute they start. I don't think there is a solution to this. You just gotta do your best.
I also think medication names are bad. The drug companies seem to select them for bland meaninglessness. Apifodendrumium. Zofibinix. I think I just made those up, but they could just as well be real. If it was called "Dr Denton's Little Yellow Acid Blocking Pill" more people could remember it, and might even know what it does.
Thoughtful and interesting comments so far. I wish I knew what could be done. There are time constraints that limit how long a discussion can last. I always end with "Do you have any questions?" and try to project my willingness to answer them.
In this particular case, you were confronted by someone who also has to explain complex things to people who don't understand them. I have to try very hard to do this, and I also find it frustrating. I freely admitted this is much more difficult for you than for me, but I also expect more from you and other physicians.
My front line experience with patient care comes from the other side of the conversation; as a patient, and an advocate for family members. Your comments were not about "not carrying a list", but not knowing what the medications and problems are.
My family members do carry a list, and my step father used to have a 3" thick folder. But don't ask him to "know" what is in it. He had far to many (6 or 7) chronic conditions to be able to remember them all at an advanced age. Nor would he have been able to remember something other than blue pill or red pill. Those conditions were NOT a result of unhealthy habits, but long term effects of a defective heart valve and asthma.
I think Shannon's comments cover rather well many of my issues.
BTW: I appreciate the dialog.
@Keith
It's understandable when an elderly patient can't recall all his meds, but not so much when a middle-aged person with no apparent mental illness not only can't remember his meds, he doesn't know what diseases he has or what types of surgery he's had. To me, that individual will not do well with shared decision making.
I enjoyed the dialogue too. Dialogue is good.
This is one of the reasons that it is an advantage to have a case manager who, can review and teach medications side effects etc to pts. I am a case manager and most of my time is spent in teaching. How about foods that interfere with medications or foods that can potentiate the effects of meds.
How about times and ways to take medications so the body's interaction causes fewer side effects. eg synthroid (AM) or lipitor at night.
Also in response to too many meds...uhhh yes amazing , but don't you think there is even now worth all the advantages of the present day communication lack of it between MD's ?? Most PCP's don't know half of what there patients are on, another advantage of case management if done correctly . jmho....
Well I don't think the point here was to undermine patient's ability to decide on his own. I presume you would agree that our surgical practice got so technical that it is just not possible to explain your decisions to the patient while you got 10 minutes in ER to talk to him/her in fact not even you had 6 hours straight and would not be pressed by workload. Surgeon can present options and obtain informed consent but I do rarely expect that my explanation will lead to rational choice on patient's side. On the other hand I don't mind this irrational factor contributed by my patients. I think calling it shared decision making is a huge overstatement but it is just my two cents from the very different and distant from US point of view. Thanks for your blogging anyway, I do read your posts with great pleasure
@Maureen
Agree care mangers can help. I read recently that patient satisfaction scores improve if the discharge process is good.
@DrNikola
I agree that it is impossible to adequately explain complex surgery to lay people. Thanks for following my blog.
As a Nurse Anesthetist (CRNA) I hear the same things when doing a pre-op anesthesia evaluation.
"What medicine do you take?"
"Oh, two white pills, a blue pill and a yellow pill"
"What was wrong with you when you went to the doctors and he gave you those pills?"
"Oh, my heart had a bad rhythm."
"Do you have high blood pressure?"
"I did, but I quit taking it because my blood pressure is now down."
Claudia upon noting the bruising. "Why do you have these bruises?"
"It is from the medication for my heart rythem"
"Do you have atrial fib?"
"Oh, yes, that is why he gave me that medicine. My doctor has all that informaiton, it is written down."
The good thing that has happened is the patients are now required to bring their pill bottles to the Out Patient Department and I can see what they are really taking.
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