I was talking with a few friends not long ago. Our conversation somehow got to the issue of authority, and what exactly respect for authority looks like. One of them, trying to make a point, turned to me and asked: \”So you surely deal with people who don\’t listen to what you have to say. What do you do when your patients don\’t take the medications you prescribe?\”
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I think he was expecting me to to be Mr. Furious and lash out against the patients who don\’t give proper respect for my authority. Most people have heard how irritated many doctors get when patients are non-compliant. \”Well,\” I said, hesitating, \”I guess I just ask them why they aren\’t taking them. There\’s got to be a reason for it, and I try to figure out why. It could be that the prescription costs too much; it could be that they are afraid of side effects; it could be that they heard something bad, or have some other bias against the medication for a reason I don\’t know; or it could be that they just don\’t understand why I think they should be on it in the first place.\”
I totally wrecked his point, which made me glad because I didn\’t agree with it anyhow.
Since I am in the midst of a series of posts on patient-centeredness in healthcare, I need to take a quick (1,200\’ish word) detour to an important related question: what happens when the patient doesn\’t cooperate? What does patient-centered care look like with non-compliant patients?
If you look up the word \”compliance\” in a thesaurus, the first synonym (at least in my thesaurus) is \”obedience to.\” This implies that non-compliant patients are, at least to some degree, equivalent to disobedient patients. This is borne out by the reaction many patients seem to expect of me when they \”confess\” they haven\’t taken prescribed medications: they look guilty — like they are expecting to be scolded. I guess scolding is what they\’ve had in the past. Certainly hearing my colleagues complain about \”those non-compliant patients,\” I am not shocked that they scold their patients. It\’s as if the patient is not taking their medication with the express intent of irritating their doctor.
But this is a very doctor-centered view of things, not patient-centered. It assumes the doctor is the one who should be in control, and the patient\’s job is to \”obey\” what they\’ve been told. It is a \”prescriptive\” type of healthcare, telling people what they should do. Doctors, after all, give \”orders\” for things, and the Rx on our prescriptions translates to \”take thou.\” We are the captains of the HMS healthcare, aren\’t we?
Perhaps this was the case when we held on to our \”special knowledge\” that others had little access to. Before the Internet, doctors were often the only source of medical information. People could go to the library and look things up, but most didn\’t take the time to do so, and there was still an air of awe given to doctors, who should never be questioned. Things have changed. Now all of the information I\’ve got and knowledge I gained in my training and during my practice is available to everyone any time. Sure, people lack the context in which to use much of that information, but they can (and usually do) check their medical questions with Dr. Google.
This changes the whole dynamic of the relationship between doctor and patient. Many would say this is for the worse, but I disagree. My father has recently (as I\’ve documented) been going through significant problems with his back. While it\’s my normal practice to avoid being a meddler in the care my family gets, I\’ve had significant cause over the past six months to worry over that care in respect to Dad\’s back. By my urging, my parents (who grew up in the age of the high priesthood of doctors) have asked far more questions and have gotten better care as a consequence. \”Yeah, but you\’re a doctor,\” some might argue. So then are only doctors able to question care they (or their loved ones) are getting?
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No, we should welcome questions from our patients, as they may just point us in a direction we hadn\’t considered. Since I\’ve been more engaged with my patients in this practice, I have seen them open up to me much more about things because they perceive that what they say matters to me. I respect what they have to say about things, so they talk to me and don\’t hold back on their fears or concerns. This means that people are much less scared to talk to me about things, much more likely to confess their alcoholism, their depression, or their concerns about medications they are taking. All of these things allow me to give better care.
So what does patient-centered care look like in a world where the patient is a participant? Here are the rules I follow:
- The patient always deserves my respect, and should always perceive that respect. It\’s not enough to respect them, I\’ve got to show that I do.
- It\’s their body, not mine. I can think it makes sense to get a surgery or take a medication, but they are the ones who have to get cut on or put the foreign substance in their body. I have to approach them with this in mind, asking about their fears and concerns, and not assuming the fact that I prescribe or recommend something that they will not question it.
- I may know more about medicine than they do, but they know more about their own bodies. There is an old saying in medicine, \”the patient will always tell you what is wrong with them.\” In other words, it is our job to listen, to ask questions, and to discuss things with them so that we can know what is going on. Many docs are far too quick to disbelieve symptoms the patient reports, and so many patients are afraid to tell of symptoms that \”don\’t make sense.\” This can lead to mis-diagnosis.
- It\’s more important to get it right than to be right. If the patient comes up with the diagnosis then hooray. I don\’t care how we come up with it. Who cares if they looked it up on Google. I look up my non-medical problems on Google. Should plumbers, electricians, or geologists be mad at me when I look up information in their areas? I could care less. It\’s my pipes, my wires, and my…rocks.
- I want my patients taking responsibility for their health. As I said before, what happens between appointments is far more important than what happens in them. This means that my job is now one of teacher, interpreter, and encourager. If I can\’t explain why they need a medication, they shouldn\’t take it. If they have questions, fears, or concerns, I want to hear about them. Most of all, I don\’t want people worrying about being scolded when they come to my office. I\’m not their mom.
- In the end, it\’s their choice. If after explaining, listening, educating, and even warning, people don\’t follow my instructions, I\’m OK with that. My job is to let them know the risk of their choices. Once I\’ve done my part, I don\’t lose any sleep about their choices.
As it stands, I feel my patients are quite compliant with what I recommend. They comply as long as I\’ve done my side of the agreement, and they tell me if they don\’t do as I recommend. I wish other docs would lighten up and stop thinking we are in the Marcus Welby world of prescriptive medicine.
We aren\’t, thank goodness.
Hi Dr. Rob,
I love that definition of non-compliance as being a "very doctor-centered view of things, not patient-centered."
One of the most overlooked reasons for this, in my opinion (as a heart patient who spends way more of my time than I want to focused on being "compliant") came from the (also-excellent) musings of Dr. James Salwitz on his blog, Sunrise Rounds. He observed in one of his blog columns that sometimes, patients just "want to be a person and not a patient anymore."
That explanation really hit home for me. I suspect that wanting to just be a person again instead of a patient is a profoundly important and under-appreciated reason for a lot of what doctors call non-compliance, especially among those living with chronic and progressive illness. And it doesn’t take much to push such a person right over the edge depending on what else is going on in the life of even the most carefully diligent patient. I wrote more about Dr. Salwitz’s take on this here: http://myheartsisters.org/2013/06/08/i-dont-want-to-be-ill/
Interesting reading. I am a patient who works with the Interprofessional Health Mentors Program at UBC, teaching future health care professionals about patient-centred and collaborative care as part of their formal education over a period of 16 months. Our conversations center around how I as someone who lives with a chronic, rare disease and disability am a PARTNER in my own care and my expeirences within the health care system that either support this or don’t. We’ve talked about how important it is to understand what a patient’s goals for treatment are-you can’t expect a successful treatment outcome (meaning the patient is compliant) if you don’t even begin to understand what’s important to them.
For example, I have a HCP who has been hounding me about "where’s your cane?!" every single time he sees me in his office. I have spinal cord damage as a result of Neuromyelitis Optica (NMO). Because of this, I have experienced buzzing down my left leg and periodically, it wants to go out from under me. So he prescribed a cane. He also tried to force a walker on me, but I did not get one-it was overkill. No one would actually know I had spinal cord damage unless I told them-that’s how invisible it is. In any case, at the time that this flare was happening, the cane was helpful. I had no problem using one because quite frankly, I don’t want to fall down and get hurt. But here’s the thing: prescribing a cane for this issue is similar to prescribing crutches for a broken foot. When your foot heals, you no longer need the crutches. When the zapping is not an issue, I do not need the cane. In his eyes, my not dragging a cane with me to his office is in his mind, me being non-compliant. In my mind, it is me exercising my autonomy in being able to discern when I do or do not need a mobility aid. Not once have I been asked what my goals for treatment are. It’s such a simple and seemingly obvious thing and yet not a single HCP has ever bothered to ask me. I find that mind boggling.
I agree with what you’ve said about if you can listen, the patient will tell you what’s wrong with them. I have shared this with my students many, many times. I remind them that their most valuable skill as a medical practitioner is their ability to LISTEN without judgement. I encourage them to stay curious. It will make their jobs so much easier.
I also agree that HCPs can respect their patients’ choice without necessarily agreeing with them. For example-if they poo-poo the idea of complimentary or alternative therapies such as acupuncture, massage therapy, naturopathy, eastern medicine, etc. it can have disastrous consequences for the safety of their patient. The patient will be uncomfortable disclosing about supplements or treatments they may be having, which could result in a drug interaction or other serious harm. It’s so important to keep an open mind and to be supportive (which doesn’t mean you have to endorse alternative/complimentary treatments) to allow your patients to trust you & keep the lines of communication open.
There is so much more I could say on the subject, but this is a great post and I have shared it with my students. Thank you!
Hi Dr. Rob. I think and write and talk a lot about participatory medicine and building partnerships between doctors and patients, and really agree with your approach. You might find this blog post I wrote a while ago about our language interesting in the context of this post: http://blog.himss.org/2014/05/28/from-compliance-to-engagement-reimagining-the-patient-relationship/
Jan
Very well said, Rob. I subscribe to this and practice this way, as I think you know. I am sharing this with my social networks.
Great piece, Rob. As one who has great respect and admiration for the medical profession, I’d respectfully state that the word "compliance" makes patients sound like you’re dealing with juvenile delinquents. That’s a bad mindset to start what should be a partnership.
I often tell people that patients are 100% "compliant" with their plan – it just might not be the same one that the Physician has in mind.
We also rarely discuss that 50% (Rand Study) of physicians are "non-compliant" with any number of standards of care or that 1/3 of the time they are receiving "extra care" Few people realize that "Only a fraction of what physicians do is based on solid evidence from Grade-A randomized, controlled trials; the rest is based instead on weak or no evidence and on subjective judgment. " or that " millions of Americans receive medications and treatments that have no proven clinical benefit, and millions fail to get care that is proven to be effective."
Scientific America pulled together much of the information a few years ago but it flies in the face of what we believe but sometimes the patient’s goals might actually be not only different than the physican’s but more than half the time the physican may not actually be prescribing the right "thing".
. http://www.scientificamerican.com/article/demand-better-health-care-book/
You are so refreshing. I work in healthcare and it’s encouraging to know there is a doctor out there somewhere who believes and thinks the way you do about what it means to partner with patients in their care. The outcomes will be better, because as you say, people know their bodies, and they will open up more when they feel listened to and respected. If you have a second, I blogged about patients as partners recently on my blog here: https://danaelear.wordpress.com/2016/03/14/patients-or-partners/
Thank you for writing.
Thanks! Nice article. I would say that I am even a little uncomfortable calling patients and doctors "partners," as it implies the relationship is of equal value to both. I am offering a service to the patient, so the patient is at the center of my care. It is my job to serve as a support, an educator, an encourager, a coach. Docs have too long felt patients were there for them, so I kind of lean the other way. Obviously, the care given by me has boundaries. I refuse to be a vending machine for medications, a nanny to oversee all details of a person’s care, or a butler to come at the snap of a finger. I think patients need to be willing to take responsibility for their own care, but they can only do so if they have the right information and the help to get to that point.
Yes, I agree. I like that perspective. It truly is a service being offered to patients, yet today it makes my head spin at how backward it all is. Your perspective is fresh and in my opinion the best possible way to help people. Thanks for checking my blog out, and for responding 🙂
As an aspiring physician and current patient, I have to say I really agree that while doctors know more about medicine, patients absolutely know more about their own bodies…a patients intuition may be the best proof against medical miscalculations. Has been before for me, with some very careful physicians.
Thank you for the article and blog, I just discovered and love it.
As an almost 7 year caregiver with no prior medical experience I have learned a lot. It is a blessing to read about your "patient-centered care."
It was so frustrating in the beginning taking on the roll of caregiver with no prior "patient/caregiver education." One day we are guest visiting the patient daily, finding out that patient was expected to be placed in a nursing home,
sister says, No, we will take care of him, thinking that the patient would return to normal in a few more months.
Patient had developed a deteriorated esophagus which he had blown a hole in during a vomiting episode. Aspiration pneumonia resulted and patient wasn’t expected to survive. However, due to his daily exercise program he was in very good physical health. He now has a feeding tube known as a J-tube which is an intestinal tube along with a trach. Just to give a little history.
We received no training before patient was discharged. Most of what we learned was from watching nurses during the 4 month hospital stay. Home health nurses were sent to train us and to spend a few days a week to make sure everything went well. This was a blessing. However, I believe their could be more benefits and less ER visits or admits if there were better "Patient/Caregiver Education" established. This is the reason for my comment.
In many situations a patient or caregiver is expected to learn and to provide care at home. In many cases the patient may never even heard of their particular diagnosis before, let alone know how to care for themselves.
It has always been my belief that in todays computerized world, that a video could be made in detail explaining the patients condition and with possibilities the medical team may be considering in hopes of the patient getting better over time.
A patient training video of what is expected in the type of care could be introduced to the patient several times before being discharged along with a nurse or social worker. Upon discharge the video could be downloaded to a disc for the patient to take home in order to refresh their memory at times when they feel the need. Many patients are very scared, may still be weak, or droggy from medications and hard for the patient to comprehend at the time, so I feel a video would be an excellent way to help transition a patient or caregiver into the treatment caring role.
I would also like medical professionals to consider the possibility of including a list of online support groups pertaining to a certain patients conditions.
Facebook has many in a large number of conditions.
However, My favorite is an online site called "Inspire.com."
Inspire has about 200 different groups pertaining to a wide variety of conditions.
It is the ONLY site that I know of that allows a patient, caregiver, family. or friend to join as many groups as desired and post a question to all the groups they have joined, if desired, and possibly get help and support from all the groups.
People are so grateful to find others who understand what they are going through.
Some hospitals and medical staff already provide a list of groups to patients but it needs to become a standard practice so patients can share how blessed they feel about their medical team providing this information.
I know I’m a little off topic but you and others who have committed seem to have the patients interest at heart. A simple video approved by professionals could show the "Do’s" correctly as well as the "Don’ts." Showing commonly made mistakes will help reduce hospital visits and a greater appreciation for their physician.
Hope This helps
Errol
Were I compliant I’d be dead! 🙂 Hospitalized fairly recently for diverticulitis, the admitting physician ordered blood thinners, antacids, and high blood pressure meds — none of which were warranted and which I politely refused.
I was non-compliant with my rheumatologist’s insistence that I take Imuran for a mysterious autoimmune condition. My pharmacist confessed he was uncomfortable giving it to be because of the severe potential side effects, so I did not get it, though I understood my rheumatologist’s reasoning was to wean me off the (tiny) dose of daily prednisone; better the devil you know, I figured. But my health records are linked through the same hospital system, and my OB threw a fit when she heard about my pharmacists’ interference. God forbid I disobey the all-knowing rheumatologist. Finally, at their insistence I started Imuran, because I was still having autoimmune symptoms (though, according to my rheum, the fatigue was mostly the results of having twins. Seriously. Over and over, I went in for help, and was diagnosed as having active kids).
My blood tests immediately went south. I broke out in bruises all over my body. They, with all their authority and expertise, wanted me to stick with it a little while longer.
Good thing I ignored them, as it turned out the mysterious autoimmune condition was Celiac Disease. All the "medicine" I needed was to stop ingesting cronuts.
After all my kids turned up positive for Celiac, a talk with my mom revealed I had been diagnosed with Celiac as a kid. That was lucky – because the years of prednisone MADE ME INCAPABLE OF TESTING POSITIVE FOR CELIAC. This can’t be said loudly enough: a major barrier to a Celiac diagnosis is that rheumatologists don’t make a Celiac panel a basic part of the autoimmune panel. And once you go on immune suppressants, the Celiac test will give you a false negative. Celiac is shifty; it mimics the symptoms of many other autoimmune diseases, and can present completely differently from person to person. Rheumatologists are consigning their patients to years of poisonous medication and no hope for a real diagnosis by treating before testing for Celiac. But don’t second guess them; they are the authorities.
Happy #CeliacAwarenessMonth !
In recent years there has been a lot of studies involving patient/clinician interactions. Sprung from Conversation Analysis from Sacks decades ago in sociology to medicine and other health areas, such as physio, OT, SLP etc. Dilollo & Neimeyer (2014) has written extensively on the matter within the field of audiology. McCormack & Fortnum (2013) found that the interaction between clinician and patient had significant effect on the outcome of treatment. Ford, Hall, Ratcliffe, Fallowfield (2000) made M.I.P.S – a tool to evaluate and teach communicative skills to oncologists to help stop the physicians burning out too soon, but also to help address the most important issues in the patients mind. because they also found that patient-centered care, amongst other things, reduces stress in patients and that it’s rather vital to address emotional issues- directly. Not forgetting Green (2006, 2009) who described the therapeutic alliance being at the outmost importance for patient satisfaction – over physicians experience and/or choice of treatment. Also – the one article I can’t remember just now, describes how annoyingly people don’t follow recommendations if they don’t agree with them ;-).
ICF is a brilliant hollistic tool to work from in patient-centered care, where you learn to work from the patient’s daily life, quality of life and what barriers that might exist in the patients life.
To sum up: You’re right, and science says so too, so go you! 🙂 (Sorry for linguistic errors, English is not my mother tongue)
When I turned 40, I had no medications that I took on a regular basis. Then I got cancer and the list started growing. Over the years the list has grown to 16 medications. When I first started on them I understood what dose I was supposed to take and when I was supposed to take them. But then some of the dosages changed, and some of the medications changed. Often now when I pick up a renewed prescription from the pharmacy, the dosage written on the bottle is different than what I understood. I look at the box of medications every morning and evening, and I’m just overwhelmed by it. Sometime around the first of the year I got so overwhelmed with it that I quit taking any of them. (I was also depressed over the deaths of my sister and two close friends) That went on for months. Now, I’m trying to sort through what I’m supposed to be taking, but the dosages on the bottles are all wrong. I’d like to make an appointment with my doctor to try to figure out what I really need to take, and when. But I’d have to admit that I didn’t take them for months and I don’t need to be scolded. I already know that it was stupid to stop taking them.