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The Positive Side Spring 2002 Patients are from Venus, Doctors are from Mars How to build a healthy relationship with your doctor by Evan Collins In some ways living with HIV is all about relationships. When you first test positive, relationships with lovers, friends, family and coworkers are called into question as you consider whom you can tell and count upon for support. One of the most important people in your life becomes your doctor, especially if you choose to take HIV medications. Since we are forced to spend a lot of time with our docs — and allow them to see intimate sides of ourselves — how we relate to them becomes critically important. Unfortunately, many people remain dissatisfied with their health care providers. It can be hard to get an appointment, we wait a long time to see them, and then they’re often so rushed that there is not enough time to adequately address our concerns. Frequently, we don’t like how they communicate or we feel they pay more attention to our lab numbers than to ourselves. We may have philosophical differences or they may be ignorant, perhaps intolerant, of our lifestyles or the alternative approaches we wish to integrate into our care. Finally, although doctors are increasingly trained to be more sensitive and collaborative, there is still a long tradition of the physician being in control of the knowledge and treatments, which can get in the way of a good relationship. As both a doctor and a person living with HIV/AIDS (PHA), I have thought a lot about these issues. Despite problems within the health care system, it is possible to build a healthy relationship to optimize our health. This entails choosing the right physician to match your needs and personality, educating yourself, and working on better communication over time. Every relationship — whether with your partner, mother or health care provider — has its problems and needs constant effort to keep it working well. Can’t Live With ’Em, Can’t Live Without ’Em: A History of Medical Paternalism From the time of the ancient Greeks, there was a dynamic of parental authority in the medical relationship. Hippocrates himself said: “Obey your doctor and you will start getting well.” Early Western medicine was closely aligned with religion and doctors often assumed the authority of God. As medicine developed a scientific tradition based on principles of anatomy and physiology, the authority was strengthened by a knowledge base that was in the exclusive domain of the doctor. Over time, this was made more exclusive by the legislative control of the training and practice of Western practitioners over healers from other traditions, such as midwives and naturopathic physicians. This dynamic of medical paternalism started to change in the 1960s with the counterculture and questioning of all institutions. A signal event was the publication of the revolutionary Our Bodies, Ourselves by the Boston Women’s Health Collective in 1970. This book challenged how medicine was practiced and taught women to become more involved in their own health. The women’s health movement started to rewrite the rules of being a patient and laid the groundwork for PHAs. When AIDS was first recognized in 1981 as a new condition concentrated in the gay male community, medical professionals were as baffled as their patients. As knowledge progressed, patients often knew more than their physicians from having shared information with each other. AIDS service organizations (ASOs) sprang up with a mandate to empower PHAs with information about AIDS and its treatment, and the skills to read and critically appraise scientific research were developed and shared. Over time, PHA power and influence grew and, along with it, gradual changes to how AIDS research was conducted, how governments regulated new drugs, and how medical care was provided by hospitals and individual practitioners. Other influences that have changed the traditional doctor-patient role have included the rise in popularity of Complementary Alternative Medicine (CAM), the power of the Internet to keep us informed, and the new emphasis on communication skills in the training of physicians. Top or Bottom: What Type of Patient are You? Even though the authoritarian doctor-patient relationship has softened, not all health care providers are open to an informed patient who wants a say in directing his or her own care. Even if a physician’s heart is in the right place, he or she may not have the time to allow for collaborative decision-making. Additionally, different patients have different needs and expectations of how much they wish to be involved. A recent Ontario study on HIV and decision-making suggested that most PHAs want a shared role in decision-making but do not want to have complete autonomy in directing their care. Plus, people’s needs change over time: A person early on in their HIV journey may need a physician who is more active, educational and assumes all the decision-making. As that person becomes more informed about HIV, he or she may need a different type of relationship with their doc, or a different doctor. PHA Seeking MD: Finding the Right Physician What to look for in a physician? First of all — and perhaps most important — is someone who knows HIV. Ideally, they should have a large number of other HIV patients so they’re forced to keep up to date. They should be interested in HIV by choice, not because they’re stuck with you. Further, they should also communicate an acceptance of you and your lifestyle. This is especially critical when a patient wishes to use alternative approaches as a complement to their physician’s medical care. At the very least, your doctor should be open to your use of alternative therapy and knowledgeable about any negative interactions it may have with your medications. Ideally, your doctor should be prepared to communicate with your complementary practitioner and work in a collaborative fashion. Ask friends or your local ASO for names of docs with a good reputation in the community. More than anything, I hear PHAs talk about needing a doctor who pays as much attention to their personal lives as to their CD4 count and viral load — someone who takes into account their total quality of life instead of just a list of symptoms. Confirming this, a recent U.S. study assessed what aspects of the doctor-patient relationship related to overall satisfaction among PHAs. Most strongly correlated with satisfaction was: 1) patients who were comfortable discussing personal issues with their doctor; 2) patients who perceived their general practitioners as empathic; and 3) those who perceived their docs to be knowledgeable about HIV issues. Most people’s primary physician is a general practitioner (GP) or family physician. If this doctor has considerable experience with AIDS, he or she may take the lead in directing HIV care. If the doc, or you, is not comfortable with his or her HIV experience, you may see an HIV specialist who usually is an internist, an infectious disease expert or an immunologist. Although this person may handle things related to HIV, one should still have a GP who takes care of other things like colds, flu shots and other non-HIV-related problems. A GP may also be the one who refers you to specialists for consultations and advice on handling other problems that crop up (for example, seeing a dermatologist or a cardiologist). Ideally, the doctor you see should run an efficient office where you don’t have to wait too long to get an appointment or cool your heels in the waiting room for hours. Even more important is the time you get inside the inner sanctum. Are appointment times ample enough to adequately address your concerns? Can you book longer appointments for when you have more in-depth concerns? A visit for a prescription renewal will require less time than an assessment for depression. Ask the office manager or nurse about how the office is run and about time issues; how do they handle after-hours problems and the need for last-minute appointments? The receptionist/office manager is often the power behind the throne, so a good relationship with them can be as important as one with the physician. What’s Up, Doc? Making it Work So, you’ve found a doctor who is taking new patients and he or she seems like a good person. Bonus! Now how to make it work? First and foremost, educate yourself as much as possible. In the HIV community, we are fortunate to have resources like CATIE that provide information about HIV and treatment options. Take advantage of the Internet (click on www.catie.ca), fact sheets, articles, newsletters, and books like CATIE’s Managing Your Health. Attend lectures and workshops. Consult with treatment counselors at CATIE (dial 1.800.263.1638) and your local ASO. Knowledge really is power. Your doctor is a good resource for some of this info but by no means the only resource, especially given his or her time restraints. The more homework you do in advance, the more productive your time with your doc will be. Be prepared to also educate your doctor. He or she may not be as up to date as you, especially regarding CAM. In most cases, your doctor will appreciate you filling him or her in. Bring along articles and leave them for your doctor to review. Also, each time you visit, bring a list of questions and issues you want to address. It will keep the visit organized and ensure that you don’t forget anything. Finally, try to be completely open with your doctor. Be up-front with issues relating to your lifestyle, substance use, adherence to medications, and anything else that is relevant to your health. Of course, one risks a judgmental response but tolerance is something you can work on. It is better for the management of your HIV that everything is on the table. If your physician is not meeting your needs, there is certainly nothing wrong with firing your doc and finding a new one. Most doctors have a thick enough skin that they won’t be offended if you transfer your care to someone else. Of course, this is a luxury that only PHAs in larger communities can afford. In many places, one can’t even find a physician taking new patients, let alone one who is HIV-knowledgeable and has the right personal qualities. Will You Still Love Me Tomorrow? Growing Old Together Even if you’ve found the right doctor who meets your needs and you’re working well together, as with any relationship there will inevitably be the occasional disagreement or problem. If you and your doc do not see eye to eye on some issues, it is not the end of the world. What’s important is that you continue a dialogue, if necessary over a number of visits. You may also agree to disagree. Even in the face of conflict, try to communicate in a spirit of mutual respect. I have underemphasized the role that our imperfect health care system plays in making a healthy doctor-patient relationship challenging. With growing cutbacks, pressures and inequities in the system, there will always be problems that beset even the best doctor-patient relationship. In the end, whether it be a problem in the system or in your relationship, what matters most is that you keep talking and trying to make it work. The HIV journey is a long one and your doctor is an important companion on that journey. Evan Collins, a former CATIE Board member, is a person living with HIV. He works part-time as a psychiatrist in the University Health Network and as a physician at the Hassle Free Clinic, in addition to doing research related to HIV drug side effects. He is currently chair of the AIDS Committee of Toronto. As a patient, he is presently with his fourth HIV primary care physician and second Infectious Diseases specialist. Patient’s Bill of Rights
Pop artist Andy Warhol once said that in the future everyone will be famous for 15 minutes. Well, the future — complete with 15-minutes-and-out-the-door doctor or clinic visits — is now. Here are 8 great tips for making the most of your doctor’s 900 seconds. Remember: You are the star of your own production!
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Decisions about particular medical treatments should always be made in consultation with a qualified medical practitioner who is knowledgeable about HIV-related illness and the treatments in question. MORE | |
 WhatUpDoc.pdf |