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Physician, Heal Thyself: Community TV

  • Richard Cohen:

    Dr. Paul Konowitz is an ear, nose and throat specialist in Boston and he is a one person case study of how a serious chronic illness changes a life.  Paul works with Massachusetts Eye and Ear, he is an assistant clinical professor at Harvard Medical School.  As with so many of us, Paul Konowitz fell through the floor when he was diagnosed with a serious illness.  Paul, tell us, what did you have and what was it like?  You just woke up one day and bam, you were sick?

  • Paul Konowitz:

    Well, it was a little bit more insidious than that.  I actually -- this was back in 2004 and around March or April of that year I suddenly one day developed this really awful taste in my mouth that I just couldn't figure out, and it lasted for a few days, and soon after that I developed some blistering in my mouth which was rather painful, and at the time I basically let it go because I had some family events coming up that I didn't want it to interfere with.  But it became progressively worse to the point where the blisters all came together and my mouth turned into one giant -- almost like a giant burn and I was unable to eat and really started to have a huge impact on my life.  I was lucky enough being an ear, nose and throat specialist that I was smart enough to know that something really wasn't right and went to an oral surgeon friend of mine who ended up doing a biopsy of one of the lesions in my mouth and I was diagnosed with a rare autoimmune disease called tempagus vulgaris.

  • Richard:

    That is rare.  And it is very serious. 

  • Paul: 

    Yes it is.  It is serious because the basic disease process is that the outer layer of either skin or the layers inside your mouth and throat get attacked by your own body and so they essentially peel off.  It is almost on the outside of your body you can have skin manifestations which I was lucky enough not to have.  I had a real serious problem affecting my throat and nose and voice box and couldn't eat, couldn't swallow.

  • Richard:

    So then you would say that it was debilitating.

  • Paul: 

    Absolutely debilitating.

  • Richard:

    To say the least.

  • Paul: 

    To say the least.

  • Richard:

    And were you shocked?  You had never been sick before, had you?

  • Paul: 

    No.  Other than the usual colds here and there which you are fairly prone to being an ear, nose and throat doctor.  But you know what I always think to myself is I always viewed myself as being more or less like Superman might be like -

  • Richard:

    You are a Harvard medical person. 

  • Paul: 

    You know almost wearing the Superman suit that I was invulnerable that nothing could harm me.  That the things that my patients the diseases that they had were because they were patients but being a doctor that would never affect me.

  • Richard:

    Right. You went from doctor to patient practically overnight. 

  • Paul: 

    Yeah, pretty quickly.

  • Richard:

    Must have felt very strange.

  • Paul: 

    It did.  You are kind of minding your own business thinking this is my life and this is the way it is going to go and the next thing you know you are quickly moving to the other side of the fence without asking for it.  It was pretty shocking when it occurred. 

  • Richard:

    But you know the expression about walking a mile in another person's shoes -- you essentially started down a road in somebody else's shoes. 

  • Paul: 

    Absolutely.  I always thought of myself as a fairly understanding and sympathetic person with my patients.  Giving them enough time and really trying to understand their problems.  But until I was really walking in those shoes I have to say that you really can't necessarily always understand.  I think doctors necessarily can't always understand what patients are going through unless they have either gone through this experience or have been more educated about this experience.

  • Richard:

    Now, you experienced pain and subsequent depression.  Both of which were new to you.  Take us through them one at a time please, and really talk about how bad each was.

  • Paul: 

    Well, I'll talk about pain first, not that that was any better or worse than the depression aspect of things, but whenever I talk before groups now one of the first things I always say is you cannot really understand pain until you've had it.  It is an indescribable thing.  As a doctor before I would hear from people, “I have pain.”  And I would be relatively generous giving them pain medication.  But until I was in that position it was really very different.  So I developed this very severe not only pain in my mouth and my throat but I developed an infection in my esophagus, my swallowing tube which was just unrelenting day and night pain for a few months. 

  • Richard:

    Now, when your patients prior to this came to you with pain issues, did you take them at their word?  Were you somewhat skeptical or condescending?

  • Paul: 

    I would say I was definitely skeptical, is probably an appropriate word in the sense when someone comes and tells you that they have pain if you can't figure out if it doesn't necessarily if there isn't something you can see and something you can put your finger on I think it is sometimes hard to understand what that patient is going through and I think there is -- physicians are always kind of questioning patients whether they really have pain because they have been educated that there are drug abusers and drug seeking people out there, which there are.  What I always say now, which is kind of like in baseball, tie goes to the runner.  Well for me now, tie goes to the patient.  The patient says they have pain I think I have a much better appreciation and I better take it seriously and take some pain medication.  There are a lot of physicians that really reluctant to give pain medication and it is often really tragic. 

  • Richard:

    But when you were -- and you probably didn't think of these terms -- when you were in pain, did you at any point think about, “I may have been wrong all these years with my patients?”

  • Paul: 

    Yeah, definitely.  It was kind of -- I have to say I kind of felt badly about it because I was in practice for about 18 years at that point and seen a lot of ear, nose and throat problems.  A lot of them do involve some degree of pain.  So I did have a feeling of some regret that maybe I had been neglectful to some extent with listening to people and when it came to that issue.  I think it is really the same with the depression issue which you had asked about; and that I myself, from going through this experience I was out of work for 16 months.  You know, really kind of isolated and lonely.  Had great support from friends and family but certainly a lot of loss of self-esteem.  When I used to go into a room to see a patient and I would look at the sheet they filled out looking at their medical problems and what medications they are on and so forth.  If I would come across if one of their medications was anti-depressant medications I know that I looked at that with some also some skepticism maybe even being somewhat condescending, maybe even judgmental about you know the fact that this person was on anti-depressants.  And immediately that jaded my thinking about the problem they are coming to see me for.  Especially if it was one of there are always problems where it is difficult to figure out what is the root of the problem. 

  • Richard:

    You know I have heard it said in various conversations with people who have experienced depression that it is A. crushing and B. nothing that people can relate to unless they have been through it.

  • Paul: 

    I think that is very true.  Just like the pain issue.  The we all have days where we say oh I feel depressed, I'm sad about a specific thing.  But I think the day in and the day out the weight of it is just so incredible until you really feel that weight on you is it is difficult for other people whether you are a doctor or just a family member to sometimes understand what that is like because you just until you are in that spot you can't possibly understand it, I don't think. 

  • Richard:

    You had to stop work for an extended period of time which work is such an important part of our identities and sense of self worth.  On top of the depression it must have been just terrible. 

  • Paul: 

    Yeah, it really was because I think I learned even more I'm one of these people that work is, my family is really important, but work is a huge part of my identity.  My identity was Paul Konowitz, ear, nose and throat doctor you know, Harvard Medical School, Mass Eye and Ear Infirmary all those things and suddenly everything is sort of pulled out from under you.  That identity is sort of thrown in the trash.  And the next thing you know is that you're Paul Konowitz the patient at home, not able to work.  Even when I wasn't terribly in pain or incapacitated I really couldn't do very much and end up in the supermarket shopping.  I mean it is just a total identity shift and it is really pretty tough to deal with. 

  • Richard:

    When you did go back to work, did you do it with resolve to be different?  I mean to grow?  What take us through each thought process. 

  • Paul:

    When I came back I started fairly slowly from a physical point of view but from a mental point of view I was had absolute resolve that I would really change the way I think about a lot of things.  Thinking about the pain aspect, thinking about the depression aspect certainly and the other thing was that I think I always had this sense that I do a lot of cancer surgery and I don't think I ever really thought deeply enough about when I take the stitches out and send the patient away and they may come back to see me another time, there is a lot of things that those patients are going through at home, anger and shame and isolation and loss of self image and so forth.  A lot of things I never really thought about before that I had experienced.  So when I came back I was absolutely sure that I wanted to incorporate some of this into my own practice and that I also wanted if I could in some way, help other doctors, whether in training or out in practice, to be able to deal with this better also. 

  • Richard:

    I'm curious, did any of your patients notice a difference? 

  • Paul: 

    It's hard to say.  I mean I think it might have been hard for some of them to express it because a lot of them that were chronic patients that I hadn't seen for a while were so happy just to see that I was back, naturally, well hopefully naturally that we never necessarily that wasn't necessarily expressed I did as I said before I think I was fairly compassionate before so it wasn't a situation where I went from complete arrogance to suddenly an enlightened person.  But I'm sure that my patients did notice a difference even though it may not have been overtly expressed.

  • Richard:

    You give a little extra **** to lessons learned the hard way.  I assume that a lot of what you are telling me now who are you lecturing? 

  • Paul: 

    Well, anyone that will listen.  But what I've been trying to do for me certainly at a medical student level that is one crucial area where there actually has been a fair amount of attention especially over the last decade or so it has become a much more important part of the curriculum in terms of such as empathy and so forth.  But to me I think really where a lot of it is lost is you know once you get out of medical school and you are a resident then you are kind of beaten down and when you become a practicing physician and you are very busy and you know it is hard to focus on those things.  I think this is where I really wanted to put my interest and really try to teach those groups of people.  So I've lectured several times on that topic to practicing physicians to residents in training really trying to give it on that end rather than concentrating on the medical school which is really with a lot of that going on already.  It is really in the other groups where there is a real lack of teaching and exposure to this kind of subject. 

  • Richard:

    You talk about the emotions that patients feel leaving the doctor's office, anger, shame, isolation.  Is that something you can help them with, deal with?

  • Paul:

    I think I can help them because I can be more understanding.  One of the things I learned is the difference between empathy and sympathy which to me sympathy is kind of feeling sorry for them which I think that is natural.  But empathy is really understanding what to me is what they are really going through.  So now I try to make a much more concerted effort to ask about emotional aspects of things.  Like someone that is just finishing treatment for head and neck cancer.  Am I concentrating on making sure they are emotionally stable, that they have the energy to go back to work, that things are okay with their family, is there anything that I can help them with.  I have even gone as far as to be a person that might prescribe antidepressants even though you wouldn't think that an ear, nose and throat doctor would normally do that.  But so I definitely will ask about a lot of those issues where before I might have just asked, “Are you eating, are you swallowing, is your weight stable” sort of the bread and butter type of questions I might have asked before.

  • Richard:

    Go back to the differences between sympathy and empathy; it seems to me that there is an empathy gap in medicine today, do you agree with that?

  • Paul:

    Absolutely.  Just I think most of what I see around me when it exists is definitely sympathy or pity more than you know feeling sorry for your patient rather than and in some ways I think it does require some effort to really try to more of having more of an understanding to feel sorry for the patient but I think also trying to understand what they are going through.  I think a lot of that is lost because it is something that we get taught but it just goes to the wayside because it is no longer it is not no one necessarily tells you that it is as valuable as you know what I do in terms of surgery, at least to me now is as important as how I take care of the patient afterwards.  I could potentially cure the cancer but if their life is miserable because of all these other factors than I haven't really succeeded.

  • Richard:

    I have certainly seen my share of doctors with MS and cancer and I have always taken note of the what I thought was a lack of empathy.  It was almost you know it was almost a feeling that I was my chart.  And little more.

  • Paul: 

    It is very true.  Yeah.

  • Richard:

    Isn't that a function of how people are trained, you know, and the paramilitary sort of feeling about internships and residencies where not enough is done to talk about relating to the patient?

  • Paul: 

    I think it is absolutely true.  It gets pushed to the wayside.  What is really valuable is your ability to make diagnosis, your ability to treat the patient what is less valued I think.  And maybe it is just part of the medical culture because there is no dollars attached to it so people look at it as less important.  There is no dollars attached to how you deal with the patient, how you communicate with the patient, how you – but in reality it does turn into dollars because those things are important in terms of other aspects of what we do every day.  Not getting sued and so forth.  I also think that you know we things like the electronic medical record, really a terrific technology to a great extent but viewing yourself as a chart nowadays a lot of doctors are trained to sit there with a computer open and just be typing in their templates so that there is one more kind of barrier to really being interactive with your patient.  The way that things have evolved which is kind of unfortunate.

  • Richard:

    You created an empathy training program for residents, can you really teach a person to be empathic?  I mean it almost seems like that is something you are born with, you got it or you don't have it.

  • Paul: 

    I think that's true. I'm encouraged because in my pursuit of this I have actually done some reading about it and there is actually some research that suggests that empathy can be taught and so that to me that is very encouraging that there is that possibility and I think even just a little something can help just as an example: part of the empathy training program I have been a part of there was a lecturer who was talking about that when you are talking to the patient, notice their eye color.  And if you notice their eye – and I have actually done this over the last few weeks since I heard this, if you notice their eye color you can connect with them better and you will instantly improve your communication skills.  Something as simple as that can be taught.  I have never heard that in 22 years.  So I think there are things that can be taught that can be ingrained whether you are practicing or in training as a doctor that can really potentially make a difference.

  • Richard:

    And do you think residents get it?  I mean do they with all the pressure they are under do they respond to it?

  • Paul: 

    I think they do.  I think a lot of them naturally think of it as sort of the fluff or the soft stuff of medicine.  That doesn't necessarily bother me because it isn't the hard medical aspect of things.  I think there is some natural resistance to having to be exposed to this sometimes because a lot of residents in training are busy that this should come natural that they are already doing it.  But I can tell you that some of the residents that I have worked with this have expressed, even after a brief period of time of being exposed to this that it really is useful and they view it that it will be useful.  So I'm encouraged by that.

  • Richard:

    Few people quarrel with the concept of physician bias and I can imagine that there is a whole body of thought that just rejects everything you are saying, that just thinks in purely clinical terms and doesn't pay any attention to the emotional sort of the emotional dimensions of illness.

  • Paul: 

    Right.  I think that sort of the I don't know if I would call it the **** but I think the ingrained mentality in the world of medicine unfortunately is definitely biased towards not towards this certainly, biased towards the things that make money and its biased to productivity and generation of dollars and cents.  And certainly we all know that doctors are in this most are for altruistic reasons but that doesn't mean that a lot of this can leak out, a lot of the caring aspects can leak out over time and certainly need to be reinforced.  There is that biased.

  • Richard:

    Everything that is going on in medicine today; managed care, corporate hospitals, high-tech medicine, that is all working against you isn't it?

  • Paul: 

    Well, in a sense it is because it works against us in the one sense because we are forced more and more and more to concentrate on the clinical aspects of things making sure we have the right diagnosis and it has forced us because economic issues to see more patients, we are busier, we have less time to spend with patients.  The medical record like I said is time consuming.  So there is a lot of demands on our time therefore some of this gets pushed aside.  On the other hand, I have to say that one of the things that is happening is there is a lot of emphasis now in managed care plans and otherwise in terms of quality initiatives, this whole concept of pay performance.  And some of these issues of compassion and communication with your patient are things that they are going to start to be looking at and potentially rewarding physicians in some fashion for those who are better at it for those that don't pay attention to it. 

  • Richard:

    You created a web site called HealthAngle.com to collect narratives from patients.  Tell us about it.

  • Paul: 

    Actually I was a co-founder with a medical writer named Ken Wyland. And what we have created is a web site which is designed to collect the first account narratives from patients who write about their experiences with medical and surgical procedures and then I review them to make sure that they are medically accurate and then they are posted.  What it is designed to do is to hopefully help reduce stress to give people information of what it's like to go through procedures.  For instance, my patients if you are a parent and your child is going to have a tonsillectomy it is really nice to hear what other parents have gone through so that in preparation for the procedure you can feel better about it and you can help your child to feel better about it and it really becomes kind of a win/win situation for everybody.

  • Richard:

    But is more work for the physician right?  To collect these narratives and to integrate them into care.

  • Paul: 

    It is more work but I think I can tell you that from my own experience the patients that have used the site and have used these accounts -- it has really been a very helpful thing for the patient and therefore where, you know, in a way you can view it as a practice builder, it helps to enhance your reputation.  Here is someone that has this ability to give me the information I need so I am not walking into a medical or surgical procedure pretty much blind.

  • Richard:

    I'm sure if you had a choice of having gone through everything you have gone through physically you wouldn't choose to do it again.

  • Paul: 

    Certainly not.

  • Richard:

    But are you do you think you are a better doctor for what you have been through?

  • Paul: 

    Absolutely.  I am the one thing that I used to -- I mean I used to consider myself to be a good doctor, a compassionate doctor.  I know that I didn't fulfill exactly what I really should have been doing.  I think this whole experience, certainly, I would have never chosen to go through this but I am a big believer now in silver linings and this is definitely for me one giant silver lining, in that all the things that I've learned and all the things that I am trying to do for others, in terms of education and for patients, I think, has made me a better person, a better doctor and certainly in terms of professional satisfaction it has made a huge difference.  And I think that is the other thing that being an understanding doctor does, it makes you feel better about what you do.  It leads to more professional satisfaction no doubt about it. 

  • Richard:

    Right.  But really it is sort of funny because it goes to a real flaw in American medicine.  I was just sitting here thinking every doctor should go out and get sick.

  • Paul: 

    Well it certainly would be an eye opening experience and I think a lot of doctors who have been sick, not for everyone, but for a lot of them it really has changed them in a positive way.  Because of that expression of walking a mile in a patient's shoes how can you really teach that, how can you really be there.  Experiencing it yourself is certainly going to have a bigger impact then hearing someone speak about it.  But luckily everybody doesn't get sick and everybody doesn't end up in the hospital.  Through all of these efforts of people like you and I, I think hopefully we can make a difference in that respect.

  • Richard:

    Do you feel like a lone voice in the wilderness sometimes?

  • Paul: 

    Sometimes. There are a lot of I think there are a lot of people that are interested in this.  I wouldn't consider myself a lone voice although there is not necessarily a huge chorus of people that are interested in this but I think the it is the other end.  There are ears out there or minds out there that are willing to be interested in this, that are willing to listen, that are willing to even consider learning about this to try to change what they do.

  • Richard:

    Do you think medicine is just going to have to be patient and change along generational lines, that younger doctors are more open to these concerns than older doctors? 

  • Paul: 

    I think there is some truth to that.  I think there is a lot more emphasis on this sort of material in medical school certainly than when I was in medical school I can't remember anything about this.  That could be I just can't remember.  There was definitely not a lot of discussion about these sorts of issues.  I think there is at least for me there is a greater hope that with the next generation that there will be some changes.  The only thing I have to say is sometimes I am surprised unfortunately I'll hear a story about a patient will tell me a story about an interaction they had with a young physician where I'm sort of shake my head and I say this person is two years out of training how can they possibly have acted in that fashion when they have been exposed to this sort of thing.  Hopefully that turns out to be more of an exception than a rule. 

  • Richard:

    Well, I think we have to keep at it.  You as a doctor and me as a patient just keep talking about these issues and hopefully slowly we will see some change.  Dr. Paul Konowitz thanks for being here and having this discussion. 

  • Paul: 

    Thank you, Richard. 

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