I’ve got the best doctor in the whole HIV-wide world!“ POZ expected comments like that in response to our survey ”Love Your Doctor?“ More than 168 readers answered ”Yes!“ with responses ranging from simple statements (”No words can say how great my doctor is!“) to eloquent praise, like Bruce McMurray’s letter about San Francisco’s Dr. Mary Romeyn: ”I have been stirred by her vision, affirmed by her respect, enlivened by her commitment to aggressive treatment, empowered by her passion for justice and service, and healed by her profound celebration of life." But no matter what the language, the length of the letter or the place where the practitioner or patient resided, POZ readers clearly think their doctors deserve nothing short of medals of honor or, at the very least, a slot on our list of much-loved clinicians.
Finding answers means asking questions.
POZ readers have wide-ranging opinions, but there are discernible patterns. If you’re in the market for a health practitioner - whether your first or fifth - much of what readers shared with us will be useful. And, with the advent of complex protease-inhibitor cocktails, choosing an expert HIV practitioner is now more important than ever. Successfully doing so means asking lots of questions.
How do you find a doctor who fits the bill?
Make a list of subjects and issues that are important to you. Since this person is essentially going to be your employee and, as we all know, potential employees are always interviewed, ask for a face-to-face meeting.
First, remember you need to feel comfortable with this person, to be able to trust him or her. For example, does this practitioner do any volunteer work in community clinics, AIDS education or fundraising? Is he or she willing and able to provide practical help with things such as making a living will and drawing up a power of attorney? Above all, will this person be judgmental about your life? Run for the hills at the first raised eyebrow. Perhaps it’s no accident that a majority of POZ readers nominated women, who drew more consistent praise than men for their compassion and ability to empathize with their patients.
If you use alternative treatments such as herbs, massage or acupuncture, ask the doctor’s views straight out. If he or she isn’t open-minded about complementary strategies you find useful, watch out for difficulties down the road. Finally, a doctor should be able to tell you what you don’t want to hear when you need to hear it most. A pull-no-punches-tell-it-like-it-is attitude goes a long way.
What about money matters?
Be careful to take finances into consideration in making your choice for a care provider. Find out what kinds of insurance the doctor takes, including government programs such as Medicaid. Will the office do the paperwork or will you have to pay out-of-pocket and put in for reimbursement yourself? The latter can mean some inconvenience or worse - parting with greenbacks, and waiting (think Rip Van Winkle) for your insurer to cough them back up. If you’re currently unemployed, uninsured or squeezed by a cheapskate insurance company, you might think competent medical care is out of your reach. Not true. Many readers wrote with impassioned gratitude about doctors who looked the other way over an unpaid bill or battled an HMO for payment. Concerns about managed care surfaced dozens of times. But countless doctors waived fees, called in freebie favors from specialists and hospitals or cut costs by giving away sample med after sample med to patients who could not afford a prescription. Don’t be afraid to bring up this issue. Remember, in some way, shape or form, the doctor gets paid for seeing you. Even public hospital staffs are paid for by your taxes. You have a right, regardless of your financial circumstances, to be treated like a fully paying customer.
What kind of office does the practitioner run?
Can you get an emergency appointment on a moment’s notice? Will the doctor return phone calls promptly and in person, or does that fall to assistants and receptionists? Is the staff friendly and supportive? One New Orleans reader was particularly moved when her doctor’s staff marched en masse in the local AIDS walk. What kind of institutional affiliations does the doctor have? Physicians who work regularly with a hospital staff are better able to ease the crisis of admission. How long are visits? Many readers wrote that being the patient of a good clinician requires some, well, patience. Delays, while annoying, may mean individualized care. A caregiver’s willingness to spend as much time as needed reviewing new information, answering questions or explaining a test - again and again if needed - might be more important that getting to the train on time.
What counts most in a doctor/patient relationship?
The most frequently listed component of a successful doctor-patient relationship in our survey was the physician’s willingness to involve the patient directly in his or her care. One reader summed it up well: “Ours is a growing, evolving and dynamic cooperative union.” The idea of partnership, of “being in it together,” surfaced in virtually every nomination. What does a successful partnership entail? That the doctor listens, not only to concerns but also to ideas, is of vital importance. POZ readers said their doctors weren’t afraid to say “I don’t know” and spoke highly of a willingness to do homework about an issue or new idea. For their part, patients should be unafraid to challenge information, to demand alternatives and to insist on the freedom to get second opinions (when warranted) and some time and space to make a decision. And look for a physician who understands that, while expected to suggest a well-informed course of action, the final decision is yours. The importance of this two-way street was documented in Good Doctors, Good Patients: Partners in HIV Treatment, (NCM Publishers/New York City) by Dr. Judith Rabkin, Dr. Robert Remien and Christopher Wilson - an excellent resource. Number one on their list of “What makes a good HIV patient?” was the statement “Takes responsibility for and charge of his or her health.”
What about personality?
All the cooperation in the world doesn’t address every need. Given the immense psychological needs and emotional complexity of life with HIV, things personal can’t be entirely ignored. “Not all medicine comes in the form of pills or shots,” wrote Richard Kausrud. Hugs, smiles, a cutting sense of humor and a hearty laugh go a long way to getting through rough seas or a tense situation. Most readers listed them as absolute necessities, like one mother who called her daughter’s doctor “a combination of coach and cheerleader. Some days that’s more important.” Hear, hear, girlfriend! How will your doctor interact with your family and loved ones? Lee Patrick wrote movingly about her relationship with her son Scott’s physician. “Without Dr. Zolopa’s help, my son would never have had the chance to experience the good times he’s had in the past year. He has kept me informed, educated me when I didn’t understand and always comforted my worries with his positive attitude and warm personality.”
How important is HIV specialization?
Expertise and experience are key. This goes beyond the practitioner’s alma mater, hospital affiliation or job title. Ideally, the physician you choose should work regularly with a good number of HIV positive patients, not just a handful they might see if their HIV caseload is a sideline to a family or primary practice. A University of Washington study, tracing 400 people with HIV who were cared for by 125 primary-care physicians from 1984 to 1994 actually found longer survival rates for PWAs in the care of AIDS-experienced doctors.
The entrance of protease inhibitors has immensely complicated the options and requirements for drug regimens. No person with HIV can afford to receive medical care that is not absolutely state-of-the-art from a physician who is not up-to-the-minute in the latest developments in the use of new drugs.
Although most of the nominations were of doctors, many readers submitted the names of nurses, physician’s assistants, case workers, psychotherapists, chiropractors, nutritionists, acupuncturists and other health practitioners.
As John Kent Lesbock so deftly pointed out, “The designation ’doctor’ should not simply refer to the level of education someone has achieved in an expensive university...[but] to all those men and women who have dedicated themselves to healing, to nurturing and caring for our sick and, sometimes, the dying.” Unquestionably, a caregiver need not have the title of “MD” to warrant a pat on the back. Chiropractor Sandra Johnson greeted Ken Papile with banners, balloons and a birthday cupcake. And the work of two nurses in particular was truly moving: Peggy LoFredo of Mt. McGregor Correctional Facility in Wilton, New York, who set up a library and organized a support group, and Don Kurtyka, who runs the Hillsborough County Health Clinic in Tampa, Florida which serves large numbers of indigent patients.
Most respondents wanted POZ to mention the clinician’s name if we contacted them. But how many of you actually told your provider you were nominating him or her? Why not photocopy the form or letter you sent to POZ and share it with your nominee during your next appointment? And if you didn’t nominate anyone, it’s never too late to tell a caregiver what he or she means to you. Jot a note. Make a phone call. Buy some flowers, or their favorite fatty snack, and make the delivery with a great big hug and smile. There is no substitute for saying thank you. And POZ wants to say “thank you” to all our readers who participated.