The Other End of the Stethoscope: an Interview with Mark Katz, M.D.
As an AIDS Project Los Angeles treatment advocate, I have had the privilege to meet a large number of fantastic physicians, some bearing the strength of knowledge, others bearing the strength of personality. Finding that combination in one physician is fortuitous. Mark Katz, M.D., regional HIV/AIDS physician coordinator, Kaiser Permanente of Southern California and clinical assistant professor at the UCLA Care Center, is one of many who exemplifies such an ideal combo. I met with him to examine the doctor/patient relationship, which has been cited often as being vital to a patient's well-being.
M.K.: Well, first, there's never been a group, there's never been a disease entity around which so many of the affected people have been organized politically, but also more specific to this interview, in terms of being assertive about what they want and what they need. So you have a group of, on the whole, assertive, well educated patients, particularly in the beginning of the epidemic, and then on the healthcare provider side, you're dealing with an epidemic about which there's so much not known ...
So doctors have been forced to say "I don't know," and the good ones, in my opinion, say "I don't know" a lot more than ever before. You kind of have this dynamic at both ends.
And thirdly, I think because there's a shortage of really dedicated, enthused, well trained physician providers, the mid-level providers -- physician assistants, nursing assistants as well as nurses and clinic assistants -- have really risen to the fore in this epidemic and you get so much that comes from them.
M.K.: A lot of times we talk about patients seeing their physicians as collaborators, and I think there is a difference between being collaborators and being equal in terms of knowledge. I think that most doctors get a little bit ruffled, and I can understand that, if a patient tries to come and usurp the doc's knowledge field. There's a whole way of training that goes into a medical education that enables somebody to look at data critically, look at the whole patient, etc.
But I'm all for patients being collaborative, meaning doctor gives patient the information: here's choice A, choice B, choice C. I think they're equally possible or potent; you get to choose. That's something I do. So I do see the collaborative model working that way, but I think in general most doctors treating HIV know more than most patients with HIV.
M.K.: Number one is take advantage of things like e-mail, and fax and voicemail. One of the first things I think a patient should do on an initial interview is ask the doctor "The moments I'm not with you in the office, when something comes up, how can I reach you?" ...
In terms of the time within the office, I think there's work that people can do in terms of learning how to be a little more assertive. I think there's none of us, myself included, who doesn't give over some of that power in a parental role when we're faced with being a patient in front of a physician. I know it happens to me as well when I go to someone as a patient. I think that there are some definite, learnable skills.
For example, if a doctor comes in and says "Listen, I'm really busy, I've only two minutes today, I'm really sorry," the patient should say "I really need 10 minutes of your time today, how can we accommodate that?" instead of just letting it slide. Another thing a patient can do is definitely come with a list of questions. You know, I do this in my lectures sometimes; before I give an open-ended lecture I ask the audience, "What are the things you want to know? Give me your questions first because I may cover them anyway." So I encourage patients to bring questions with them, but not after a 15-minute discussion pull out a paper and say "Oh, I've got eight questions for you." But at the beginning I say "Let me see what your questions are and we'll kind of cover them through our talking, through our exam."
M.K.: In the sanctity of the physician/patient relationship, if appointments are slotted for an average, I can see some patients in my practice in three minutes. They just want to be said "hello" to, smiled at, necks felt, lungs listened to, abdomen felt, a few questions and that's it.
Then there are people who want 30 minutes and I say, in the big picture, no restrictions being placed, I would actually love for a patient to spend more time. I think a 20- to 30-minute slot is a very reasonable period of time, particularly for somebody approaching a major juncture of treatment. Plus it's that extra time after we talk about the labs and after we talk about the medications that really lets the physician/patient relationship mature. After the labs, after the medicines are reviewed, and after the physical is done, a doc gets to sit with a patient and say "So, how have you been the last two months?" or "You know, I've never really asked you about, what do you think about life and death? What happens to us after we die?"
You know, it's that kind of stuff, that gravy that makes the relationship sacred, and that's hard to do in a continuous series of 10- to 12-minute visits.
M.K.: Well, ideal would be to receive information by e-mail or fax -- preferable to voicemail -- so I have it in front of me. I can take two pages of fax notes about symptoms and in 90 seconds -- sometimes, sometimes not -- read it and kind of come to an impression before I see the patient. So I would say that one thing would be to ask your provider if it's OK to communicate prior to the day of the visit, at least a one-way communication, "Here's what I want to talk to you about ..."
I think that maybe the bottom-line principal is in the first or second meeting to determine from the patient's perspective, "How do you like to do things? I want to make myself available for you to set me up with agendas and fax me things" or "If you just want to show up and hang out for a few minutes, that's OK, too."
M.K.: Well, I think just about everyone I know who practices HIV medicine on the provider side realizes we could not take care of people in this epidemic without medical updates, treatment advocates and any other source. So I stand, maybe on the extreme, but I think the more information someone gets, the better ...
A new patient two weeks ago said "Well, I spoke to six people. Three of them said I should take this, two of them said I should take a different regimen, one said I shouldn't take anything at all." He said, "I'm not really quite sure what to do." And in a way a statement like that mimics what goes on in medical decision-making and it helps to, appropriately, disempower the physician as God. So, I think getting as much information as one wants is something I prefer for my patients to do.
But I want to say now, one of the most important things I'll say in this interview, is that in working in the PLUS seminar for 10 years as a physician, working with treatment advocates, I know that there is a tremendous push in the HIV treatment community to tell patients to get knowledge, to empower themselves, to make decisions, and one of the things we say at the beginning of the PLUS seminar is "Read all you can. Go to updates." You know, those are all options, but I sacredly endorse the option that if you're my patient, and you don't want to do any of that, that's what I get paid for. If you just want to come to me and put your faith in me, and your faith that I'll say "I don't know" when I don't know, that's totally valid.
In this age of empowerment with HIV, we should also be reverent to patients who have that old school model and say "You're the doctor! You know, I'll do what you say!"
M.K.: That's a great question, Glenn, because the answer to that comes from Hippocrates: It's the art of medicine rather than the science ...
And so, presented with a new patient, let's say in whom I'm going to start three drugs, and the Physician's Desk Reference together would list 240 possible side-effects, I would, minimally speaking, give him/her a number to call, a pharmacist, a treatment advocate, whom they can call on any day to get additional information.
But another thing I like to do is say to the patient, "Listen, we've got medications here, and the FDA has got to put out a list of things that happen even less than 1 percent of the time. Some people like to know everything. It's gonna be a long list. It will probably be a little bit anxiety-provoking for you. Or, I can just tell you the things that are the 20- to 30-percent range, or I could tell you nothing. What do you want to do? ..."
I think giving everyone a laundry list of all the possible side-effects is a little bit spooky. Plus, I tell everybody that with any medicine in the world, aspirin and Tylenol included, there are three side effects -- fatigue, nausea and rash -- which are virtually always possible!
M.K.: I tend to be a little bit more of "wait and see" in terms of writing a prescription, but definitely try to set it up in the patient's mind that this is something which is seen. Because let's say I prescribe the medication and don't tell the patient that 20 percent of people get diarrhea and the patient goes out, has diarrhea the next day, and goes to a support group that night where he says, "I'm on this medicine, this is what happened. Well, I didn't know that." So you see the physician/patient relationship is already damaged. So there has to be a certain minimum amount, but, again, it's the art of medicine to be able to communicate that to someone in a way that's not off-putting.
I will rarely send someone out with a new medication and at the same time prescribe an anti-nausea med, an anti-diarrhea medicine, an anti-rash med. But, on the other hand I will give them key symptoms and definitely phone numbers. I think the surveillance by a pharmacist, and I think most HIV treating situations in L.A. today have some pharmacy/HIV expert plus treatment advocates who can definitely attend to those things if the doc's not available.
M.K.: Oh, yeah. What I do is say to them basically, "Look, there are all sorts of things that can happen, most of them don't, but there are a couple of things I want to mention to you briefly. I want to know what you think. Do you want me to go through a list of things that happen less than one in a hundred? ..."
M.K.: Two things come to mind immediately. The first is the obvious demographic. People infected today that I see in my personal experience tend to be younger, tend to be people I would guess with a lower median income, maybe less education.
Secondly, on the average, they are less ill than were the newly diagnosed 10 to 12 years ago, because a lot of people didn't come in until they had full blown AIDS, such as a seizure with heralding toxoplasmosis, etc.
But the third thing, and maybe the most important, is the psychological thing. Somebody getting infected in 1999 has an additional issue -- that of shame, which was not an issue that existed in 1985, the year the test came out. People in 1985, or even 1988, '89 or '90 didn't have information, they could've gotten the virus back in '82 and '83, before we had risk reduction guidelines.
People today come in -- and I think this is one of the most sacred things in a physician/patient relationship, and I practice this and I preach it -- that in the first interview, the first time I meet someone, face to face, after I know they're HIV-positive, this would go for a friend as well as a patient, never, never, never in that first interview do I ask them "How do you think you got it? When did you get it?" Because there's no way, in my opinion, that could be heard as anything other than that parental finger, "You should have known better!"
M.K.: Very much so, and actually it makes our job so much easier but it's such a pleasure to be able to say to someone, not just newly diagnosed as positive, but someone definitely who's newly seroconverting or has just recently been infected, "I am able today to tell you that with our current medications, you may go on to have no damage to your immune system and, although you may still be infectious for the rest of your life, live your life." That's an amazing thing.
I'd have been skeptical if somebody had told me five years ago that we'd be saying that to people, when you think what the message was then, when somebody came in newly HIV-positive, it was, "How many T-cells do you have?" And cranking down at 50 to 100 a year, you would just extrapolate that to the time they have about 50, and then add on another six months to a year, and that was it. We don't do that anymore. That paradigm is gone.
M.K.: What I think of first is a quote which Dr. Brian Gozzard, from England, said at the Geneva Conference, and I'm paraphrasing. He basically said "The patients of mine who have done the best are the ones who've lived long enough to know that what I told them originally was wrong."
And I think that's one of the subtexts to this epidemic, that there's a tremendous amount of change in the information, and I think one of the most important things a doctor can do is develop the capability of, and I'm not even talking for medical/legal reasons, but for psychological reasons, saying, "This is the best course that we know of today." Or "These are the options given today." I do think that, you know, three years ago, when protease inhibitors came out, we took people on a dual nucleoside regimen whose viral loads went up and we just added a PI, then found out a year or two later, that was not the right thing to do -- we needed to change the whole regimen. But we didn't know it then.
I'll be damned if I know of a lawsuit where any patient successfully or even unsuccessfully sued a provider for that. There's a thing in medical school -- it's almost as if it's taught to you -- "Don't say, I don't know. But kind of fudge it, kind of go for it." Well, HIV changes that. In HIV it's really important to say, "I don't know if this regimen or that regimen is really going to be better and I don't know because it's not known yet, or if it's known, I don't know ..."
M.K.: Right. That's ever so true.
M.K.: Sure, I could give you actually two examples of the same therapy two patients in my practice were on.
One was a new patient to me and it was a chemical that was being studied overseas, kind of the typical scenario we see, not much written about in America, the researchers said that the FDA was not being reasonable, etc. Well the first thing I do is I stand back and think of my Hippocratic Oath, "Physician, do no harm." So, if I don't have reason to know that this is harming them, either physically or maybe stretching things financially, who am I to squelch it? So I try to support it.
Secondly, I feel better supporting it if it's not going to keep them from something which I know would help them, but in this case, this antiviral treatment was keeping both of these patients from more traditional Western medicine. So, what I did is I sat down with each of them and made, I didn't call it a contract, but I said "Let's talk about the future. Are there any circumstances under which you would go towards a more recommended Western approach? If your viral load reaches a certain number, if something happens?"
They both came up with ideas. One of them did reach that threshold. His viral load had gone over 50,000, and he went on, I'm happy to say, triple combination therapy. He's now undetectable under 50, and he's very happy.
The other patient, who's much more iconoclastic at the Western medical system, despite the fact that his viral load has stayed in the 50-100,000 range, has remained on the therapy, and two weeks ago he came in with a case of neuropathy. We know that neuropathy is, of course, a symptom, one possible manifestation of HIV-infection when it's not being appropriately squelched. So of course there is that parental voice in me that would have wagged a finger at him saying, "See!" I didn't, but I did sit down with him and in the least offensive, least confrontational tone of voice possible, said to him, "This is one of the things that can happen if you're not on appropriate antiviral therapy. Does that change the way you look at it?" And he said, "No."
And that's it. He gets to make his choice. I guess the thing that's scary for me is when you have a patient who doesn't really have the intellectual capability to understand the options. What about somebody who I feel is really being dissuaded, misled, and they don't really have the information? Then it's a little bit stickier.
M.K.: Actually, it's a technique that I learned in my Shanti training as an emotional support volunteer in 1985 in the days when we were apt to "support" our clients no matter what. So if I was a volunteer for a client who was going and having unsafe sex in 1985, I would not, as a Shanti volunteer, have told my client, "Don't do that." I would have found a way, by saying things like, "I have concerns about other diseases you might pick up." So in those moments where I'm feeling myself getting heated inside, what I usually do is try to do a reframe and the first thing I usually say to the patient is, "Well, how are you with that?" In a case where a patient won't go on a medication when appropriate, I might generalize the situation and say, "I've seen 10 people in this room in the past three months in a very similar situation and eight of them have wound up going on medication. When I say that to you, how do you feel?"
M.K.: Oh, good question. Except, I always start out that way! That's what I love about medicine. I usually sit down with them and say, "So, how are you?"!
M.K.: Right. And it's interesting when I sit down with somebody and say, "So, how are you?" I'd say about 30 to 40 percent of the patients respond with a viral load. "How are you?" "Oh, my viral load is undetectable." And that tells me a lot about that patient. But another 30 to 40 percent will say, "You know, I'm feeling a little bit down recently." Or, "Well, I got this new job and I'm sort of excited." It gets into another track and I try to make each interview sort of open. Again, the art of medicine -- just kind of let it open itself up.
M.K.: I don't keep it all in my head. I call treatment advocates.
Seriously, as you well know, I'll tell you a couple of other things I do. I try every day to read. There are enough things published in the medical literature and I go to a web site -- Medscape or Aegis -- either of which could keep somebody busy for most waking hours of the day. I try to read something everyday, that's sort of my philosophy. I've gotten to this, sort of, if you will, '60s Zen thing about: If I learn one new thing each day, even if it's that India recognizes there are 8 million HIV-positives in the country -- which is something I learned two days ago -- it may not have direct relevance to the person sitting in front of me in Los Angeles wanting to change a regimen, but somehow it all adds up. I may learn it by talking to you and you tell me about some new trial or something you've heard about. I may learn it once or twice a month going to some sort of a medical meeting that specializes in HIV. I may learn it from the librarian at the medical center where I work bringing me the articles as she does on all the major HIV issues.
M.K.: Important if it's one or two as opposed to a low number versus a high number. Frankly I'm not sure there would be that much of a difference between say 80 and 430. But single-digit numbers versus large numbers, important.
M.K.: I would say that's probably less important, although it probably does say something about the practice. Here's where I think the difference is between private practice and non-private practice. In a private-practice setting, the people treating you can exercise considerable control over the waiting room, what color the walls are, what magazines are there. I'd say it takes on a greater importance. I think if you're in an HMO setting or a public sector setting, your doctor can be a gem and be surrounded by a waiting room with no magazine newer than 1992.
M.K.: I don't think in full view is important, honestly. I think if it's important to the patient, the patient should ask.
M.K.: That to me is extremely, of paramount importance. If you are going to be in a health care setting, a majority of the time is probably not going to be with the physician. It will be with the receptionist in the waiting room, with the nurse, with the lab people. If it's five or 20 minutes of wonderful information from a doctor you like, flanked on either side by two to three times that amount of unnerving, disquieting, unfavorable interaction, I'd say shop somewhere else!
M.K.: I'm an extremist on this one, but I think that bedside manner is so phenomenally important. Because, I'm assuming that if a physician with good bedside manner does not know what to do, he or she will be able to look at the patient, maybe even take the patient's hand, and with a gentle reassuring tone say, "You know, I'm not sure what is the best thing to do now -- but I'll find out ..."
M.K.: That's fairly negotiable, meaning you want a doctor who gets information, you know, from the medical literature, from major conferences, as opposed to anecdotes. But I assume that many patients should be able to make that distinction. I guess I'm hesitating because I've such a high regard overall for the medical treating community in l.a. that as you ask the question, I'm scanning my mind of the people in l.a. who practice HIV medicine and thinking, "Gee, who are the ones that I just wouldn't want to go to?" You know, we really have a pretty terrific community!
M.K.: Uh, yeah, actually that one doesn't bother me because I could always say -- and I have said -- "I'm interested in what you're saying. Why don't you come up and talk with me after?" I think that the number one pet peeve is patients who say, "Well, I'll sue you." But that doesn't usually happen on a week-to-week basis. It's the patient playing the victim and implying that they will take it to the papers, take it to court, something like that.
I just thought of another patient pet peeve. Well, there are some patients who are hypochondriacs. There are patients who are on the extreme, the patients who want to know all 104 possible side effects of a drug and get 38 of them in the first three days and want a return call on them. I can feel myself becoming short with them.
M.K.: My dream patient is somebody who reads, studies. It's somebody who is emotionally open and reasonably stable, pro-active enough to get information about what's going on to make responsible decisions about his/her care, but who also leans on the physician and asks me, "What do you think of this?" Someone who accesses me frequently enough to get the information he/she needs but doesn't say, "I need you to call me today with this ..."
The dream patient is somebody who is as interested in talking about what's going on in his world, in his life, in reference to HIV as I am in hearing about it. Somebody who will speak well of his/her experience with HIV and being treated by me and at Kaiser. I'm not totally egoless about this. I mean, I'm very proud of what we do at Kaiser and I'm personally proud of what I try to do. So, you know, I appreciate somebody who appreciates that.
M.K.: We're not at one extreme or the other. We're not saying we want the patient to ignore what the doctor says, coming in and blaring, "I'm gonna do this and I don't care what you say and I'm not going to follow your regimen, and I'll come late to my appointments." Nor do we want the other extreme, where the doctor leaves no room for disagreement, for questioning, for additional time, and who basically turns into the bad parent. But something as close to the middle of those two extremes as is comfortable for the patient.
I, the physician, am serving the patient, and if I have a patient who wants me to me more directive, and maybe more like a father figure, you know it's my job to kind of figure that out and be it. And if it's a patient who wants to be a lot less directed by me, and be a lot more accepting of his quirks and whims, I'll try to be that. And I think one of the reasons that I love the practice of medicine is that I think that the extent to which a physician likes clinical medicine is directly proportional to the extent to which she/he likes to have a variety of personalities. I mean, I like having to be really firm and guarded and instructive, and five minutes later come into a room where somebody wants me to be very hand holding and receptive.
M.K.: That's a great question. I think about it all the time. In the short run, if I'm having a stressful day, or an encounter with a stressful patient, after that patient, or even in the middle sometimes, I leave and I just go out for a minute and I remind myself that I wanted to get into medical school, and nobody forced me to go. That this is what I signed up for basically.
In the longer run, I say that I recharge myself, on the spiritual level, by constantly feeling privileged to be involved in something as intimate as caring for patients. But I think what you're really looking for are things that are practical that I do? I saw a movie the other night and it was my first one in a month and, boy, I was long overdue. I need to go to the movies, preferably twice a week at least. I swim, I read and in recent years I've been doing a lot of writing. Writing's been a way for me to interpret and reflect on a lot that's happened with the epidemic and I could never do all of this without the support of Bob, my wonderful partner of four years, and my friends.
M.K.: Thank you.
This article has been reprinted at The Body with the permission of AIDS Project Los Angeles (APLA).
This article was provided by AIDS Project Los Angeles. It is a part of the publication Positive Living.