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Personal Perspective

Partnership in Care

Winter 2004/2005

Medical providers or primary care providers include physicians (MDs or DOs), Nurse Practitioners (NPs), and Physician Assistants (PAs). Primary care providers who care for people with HIV include those with special training in Infectious Diseases, Family Practice, Internal Medicine (Adult Medicine), or Pediatrics.

Over the past 20 years of caring for people with HIV/AIDS, there have been challenges and rewards. The rewards outweigh the challenges. I like to focus on the rewarding parts of my practice. The greatest reward for me is getting to know each of my patients and to see them stay healthy. If you're struggling with your health, with adherence to medication, to understand what your provider is talking about, or to keep up with your medical appointments, then please read on.

Human relationships cannot be underestimated, and the partnership you have with your provider can help you stay healthy. Like any partnership, the one between a medical provider and a patient takes time to build. And, as with all relationships, there must be regular contact, mutual trust, honesty, understanding, and kindness. Relationships don't always start out great, but they can get there with work. It may take several visits for a provider and patient to adjust to one another and to build trust.

One thing is for sure -- the course of care goes much more smoothly when a provider and patient finally click. I call it the "click thing." I encourage patients to stick it out and give a new relationship time. It may take four or five visits with a new provider in order to find out if it will work. Personalities sometimes need time to adjust to one another in order for the relationship to take shape. The staff is an extension of the provider and is part of the bigger relationship. Your relationship with the staff and your comfort level when you see your provider are all important aspects of your well-being and care.

During medical visits, both your concerns and your provider's concerns about you and your care must be addressed. Knowing how much time your provider has to spend with you will guide you in your discussions. Medical visits in this day usually range between 15 and 30 minutes. A lot of information must be shared in those minutes, and time seems to move too quickly. If you're knowledgeable about your health, your medicines, and the results of your tests, it will help to build a true partnership with shared goals.

Some partnerships do not work. For some reason, some people just do not get along. That is true with providers and patients. This is a part of being human. If you have given the relationship a chance but the "click thing" just doesn't happen, try talking to trusted friends. Finding out where friends go, if they are receiving quality care, and if they are happy with their provider and the environment in which they receive care can be helpful in finding the type of provider you want and need.

Some people believe that they don't need to know their test results because their provider already knows them. Have you ever noticed that your provider wants your medical record when seeing you or when speaking to you on the phone? That is because she may have over a thousand patients and cannot possibly remember all the details about your care without looking at your medical record. You, on the other hand, are one person and can remember your own information easier than your provider can. Other patients are afraid to know their T-cell and viral load levels. Unfortunately, not having that information can do more harm than good. I have found that these are often the patients who are struggling the most to accept their HIV diagnosis and to understand the importance of adherence. I strongly feel that if patients know and understand their results, they are more likely to own their health and are empowered to stay as healthy as possible. Knowledge is power. And knowledge about your condition can help you stay healthier.

Sometimes patients are uncomfortable with medication side effects. I encourage my patients to tell me about them, even when the side effects seem minor. If a patient who gets side effects doesn't return to tell me about them, then we've both lost the opportunity to work together to find the best treatment. What works for one person may not work for another. Finding the right medication is best done in partnership with the same provider over time.

From time to time I hear people complain that their providers don't listen to them. In all partnerships, it is important for each person to be heard and understood. You may notice that, during visits, your provider is doing a number of things at one time -- listening to you, going through your medical record, and writing. Your provider is checking to make sure that you have had all of the elements of care that are necessary to keep you healthy. Sometimes a provider may be focused on a particular aspect of your care while you are focused on something else. That can result in miscommunication and misunderstandings. Over the years, I have told my patients that if I seem not to hear a particular point they are making to stand up and walk to the middle of the room. It sounds funny, but it works for my patients and for me. Whatever you do, ask your provider for a way to get her attention when you need it most.

It can be helpful to have a family member, friend, or case manager accompany you to medical visits to reduce the stress of the visit. Sometimes there seems to be just too much information to understand, and your advocate can help get the information you need and later discuss it with you in a more comfortable environment.

I encourage my patients to focus on the quality of care they receive. The following are tips that may help you to understand what your provider will find helpful in order to give you the best care:

  • Keep a notebook with dates and results of tests you have had.
  • Know your current medications by name as well as the ones you have been on in the past (keep a list).
  • Write down any problems or questions to discuss with your provider at your next visit. You may not be able to get through the entire list, so focus on one or two of your most important concerns.
  • Arrive at least a half-hour early for your appointments and try not to miss appointments.
  • Ask the staff to explain any delays. Your doctor may be running behind because she is seeing a lot of sick people, so try to be patient. Make a decision about whether you can wait that day or have to reschedule.
  • Tell your provider whenever you are not sure about instructions. If you do not ask questions, your provider will think you understand.
  • Have a family member, friend, case manager, or other advocate accompany you to appointments.
  • If you think your provider is not listening to you, find a nice way to tell her and ask how you can best get her attention in the future.
  • Write down dates and where you went for specialty care and try to get business cards of specialists to give to your provider for your health record. Remind the specialist to send a report to your primary care doctor.

Your provider is focused on giving you the best care possible, and giving the best care includes following "standard of care" guidelines. The following care should occur at least once a year and more often if determined by your provider:

  • Physical and mental health examinations
  • PPD (tuberculosis test) if your PPD was previously negative
  • Women's health exam, including Pap smear, chlamydia and gonorrhea screening
  • Blood test for syphilis screening
  • Blood test for Hepatitis A, B, and C screening (as determined by your provider)
  • Eye/vision examinations
  • Mouth and dental examinations
  • Blood tests for cholesterol and sugar levels

The following are usually performed every two to three months or more often as determined by your provider:

  • T-cells (CD4) and viral load (level of virus in the bloodstream)

Immunizations are important to prevent sickness:

  • Flu vaccines once a year (flu shots are usually available by mid-September)
  • Pneumonia vaccines every 6 years
  • Tetanus diphtheria every 10 years
  • Hepatitis A immunizations if you have a negative blood test (2 shots 6 months apart)
  • Hepatitis B immunizations if you have a negative blood test (3 shots over 6 months)

Be proactive and work with your provider to stay on top of the routine care that you need in order to stay as healthy as possible. Cancer prevention and screening is also important, so do not forget to ask your provider about:

  • Colon cancer screening (for men and women 50 years old and older)
  • Breast cancer screening with mammograms for women and for male to female transgendered (age 40 years old and older)
  • Prostate cancer screening (for men 40 years old and older)

As you can see, there's a lot of work that goes into caring for each and every person. At first, it may seem a little overwhelming when you try to keep up with everything. However, just as with everything else in life, the more you learn and do to keep yourself healthy, the more comfortable you will be with your own health, your provider, and the healthcare system. Every step forward counts, so "just keep putting one foot in front of the other." Before you know it, you will be working in partnership with your provider in order to stay on top of your health.

L. Jeannine Bookhardt-Murray, M.D., is Medical Director at Harlem United in New York City and Medical Consultant to the Office of the Medical Director at the New York State Department of Health AIDS Institute.

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This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.
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