The doctor-patient relationship is an important one if we want to stay healthy and especially when we're sick. The beauty of this relationship is that we don't need to stay together for the kids, so we might as well find one that works.
Recently, I had the pleasure of sitting down with Greg Milward to talk about our failed relationships and those that have worked, and what it is that makes the difference. What follows is part of our conversation.
Heidi: Greg, how do you go about asking questions and raising concerns with your medical provider?
Greg: Going into my appointment with my doctor, I recognize that I have a limited amount of time to spend with him and I do some things to maximize the time. First, I prepare a memo to the doctor that does three things. It updates him on issues or problems we discussed at our last appointment. Second, I list issues that I need to discuss with him at this appointment. These can be medication issues such as side effects or other problems that I am having. Finally, I list any other general questions I have for him. I find that having put things in writing helps to makes sure that all of the issues I want to cover are dealt with. My doctor also likes this because he then has something that he can put in my file that lists the issues that I brought to him to discuss. In busy clinics, the best ally you can usually have is the other staff in the clinic. Get to know the nurses, physician's assistants and front desk personnel. Having a good working relationship with the clinic staff is almost as important as the relationship you have with your doctor.
Heidi: I think that writing down your questions and concerns also helps make them real, so to speak. Sometimes, as a means of coping, we minimize or deny what we're going through. Consequently, it's harder to bring those things up when we're sitting in an exam room in front of our doctors, who may or may not be distracted, or focused on some other aspect of our health, or tired from whatever else they've got going on in their lives. If we write those things down, my guess is that we are much less likely to ignore them ourselves, and much more likely to treat them like the real things they are.
Do you feel like HIV-related issues form the boundary of what you bring to your HIV provider or do you approach your doctor with broader issues than that?
Greg: In my case, nothing is off limits in what I will ask my doctor about, primarily due to the fact that my infectious disease doctor also functions as my primary care provider. This isn't always the case. In situations where you are seeing an infectious disease specialist for issues related to HIV, some think that it should limit what issues you would bring to your appointment to discuss. I don't agree with this. Let the doctor decide whether or not issues are related and, if necessary, provide a referral to a specialist to deal with other issues.
Heidi: That's an important point. Some physicians trained in a particular medical specialty may not be that eager to do what amounts to primary care, even though many would argue that good long-term HIV care necessarily requires it. Someone who is an infectious disease specialist, for example, might be more focused on infections that get cleared and may not be all that interested in monitoring heart disease risk, managing diabetes, etc. -- the stuff that's necessary in a lifelong infection like HIV. It's my opinion that the physician who feels that way should consider getting out of HIV practice.
Like it or not, HIV is a complicated, long-term infection that requires specialized care. Some HIV patients don't have health coverage, so having another doctor to deal with their non-HIV issues is out of the question. Besides, it can be a challenge to distinguish what's HIV-related from what's not.
As a patient, it doesn't take long to figure out that non-HIV providers often don't really have a clue about how HIV and antiretroviral therapy intersects with other "regular" health issues ... which doesn't lend itself to good, comprehensive care.
There must be some questions or issues you find harder to bring up than others. I mean, the doctor's office can be an intimidating place and there's this thing that a lot of people have about, well, wanting your doctor to like you, you know? Plus, this is the person who writes the prescription for that medication you need and decides whether to order that lab test you want -- let's face it, you don't get that far without this person's okay. Even beyond that, I'm not sure all patients get the signal from the doctor that "anything goes." So, what are the kinds of things you've maybe had to work at to put on the table with your doctor?
Greg: The hardest issues for me to discuss with my doctor have been related to pain associated with peripheral neuropathy and fatigue. Chronic pain is hard to describe and, for me, there was an irrational fear when I first started to experience it that my doctor would think it was all in my head. Fatigue was also a hard one to discuss, at first. I quickly got over that, though, when my doctor convinced me that confronting issues related to fatigue was one of the key factors in improving a person's quality of life.
I know this sounds strange, but I also think that in the early days after the advent of HAART (highly active anti-retroviral therapy) there was a sense of survivor's guilt that made issues like pain and fatigue hard to discuss. After all, we had watched friends die of this disease and, for me, early on in my relationship with HIV medications there was a sense that I needed to be grateful to have the medications and just needed to deal with what I thought at the time were the "minor" issues related to fatigue and neuropathy.
Heidi: I have to think there's been a time that you didn't agree with your doctor's approach to an issue. How do you handle that kind of thing?
Greg: With my first doctor, I disagreed with his approach to the relationship between doctor and patient. I was expected to simply be the subservient patient. Since that failed doctor-patient relationship, I've been fortunate and can honestly say that I've never disagreed with my doctor's approach. I think that's because with both doctors I've had the privilege of working with since my first doctor, the relationship has been one where I was able to openly discuss, question, debate and ultimately decide with my doctor what course of treatment was going to be taken.
What about you?
Heidi: I guess my ride has been a bit bumpier but it got me to my current doctor, so it was worth it, I suppose. I've had providers who've kind of drawn some weird lines in the sand that felt a little power trippy to me and, to be honest, I found it hard to recover from that and stay in the relationship. What I really appreciate about my current doctor -- and this seems like a bit of a lost art in medicine -- is that he listens without the interference of his ego. I didn't say he has no ego, mind you, and I joke that I don't want to be the last appointment on his marathon clinic schedule, but I'll take his willingness to take me into account any day. I like to say that what makes it work is that he knows his place and I know mine -- he's the advisor and expert and advocate, and I'm the one who lives with this virus.
What do you do if you aren't getting what you need from your provider?
Greg: First, remember that you are the "consumer." If you don't feel that you are getting what you need from your provider I would approach it head on. Is it just not a "good fit"? This can be nothing more than a gut feeling that you don't click with a particular provider -- you don't like his or her bedside manner. A doctor may be a brilliant clinician, but if you don't feel that you can bring issues to him or her to talk about open and freely, then it's probably not a relationship that will work in the long run.
Heidi: Amen. I am continually surprised by the blind trust that some people have in their providers. I've heard people say, "Well, I wouldn't want my doctor to think I'm challenging him in any way. He's the expert, not me." That scares me a little. There are brilliant physicians, of course, and there are also overworked physicians, physicians who don't keep current with research, physicians who don't treat much HIV, and, frankly, physicians who just aren't very good. My feeling is that -- and I had to summon my courage early on to say this once to a physician who was skilled but was just not listening to me -- when I leave the exam room, HIV comes with me; unlike you, I live with this disease, and I will die with it. That means that there are some things I am the expert on, like how I want to live with this and what I want my care to be like.
Greg: I'm guessing you no longer get care from that physician, yes?
Heidi: You got it.
If you could only say a few words to someone newly diagnosed about getting the most out of the patient-provider relationship, what would you say? This is your chance to create a motto, Greg!
Greg: Trust your gut instinct -- does the relationship with your doctor feel right? Don't be afraid to change doctors if you don't feel you are getting the care you deserve. Also, remember that getting the most out of your relationship is a shared responsibility between you and the provider.
What about you? What's the message you'd give to someone just setting out?
Heidi: Hmmm. The big thing I think about is that your doctor gets to leave HIV when the workday is done; you don't. If you're not all that interested or involved in your care, why should anyone else be? Even if your doctor sometimes wishes you were less involved, shall we say, at least it becomes clear that you are in it for real -- you're here to take care of yourself. I'm pretty confident that leads to better care.
Heidi M. Nass is a lawyer turned treatment advocate and educator. She is based in Madison, Wisconsin, at the University of Wisconsin HIV Care Program. She may be reached at firstname.lastname@example.org.