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The Resource Train

A Journey Toward Finding the Best Medical Care

March/April 2004

Sarah Biel-Cunningham, MSW

One of the most important steps for a person living with HIV to make is taking control of his or her healthcare. This can be accomplished by finding a healthcare team that is right for him or her. Ideally, a person should have a comfortable relationship with his or her doctor, one where the lines of communication are open with mutual respect and shared long-term healthcare goals. This should be a working relationship with two individuals, the doctor and the patient, coming together to achieve the goal of successful healthcare to ensure that the patient is attaining the highest quality of life. So how does one start this journey of searching for the ideal healthcare?

First, it is necessary for you to know what makes you comfortable in a healthcare relationship. What is important to you about a doctor? Race? Gender? Age? How about location? Can you easily access your healthcare provider? How do you communicate in this type of relationship? Are you comfortable asking questions and researching information for yourself, or do you need a doctor who can provide as much information as possible? It is important for you to understand what you need out of the relationship in order to be a partner with your healthcare provider.

Once you understand your own needs, you are ready to find a healthcare provider that works best for you. Start by gathering names of area doctors. Referrals from other individuals living with HIV or from AIDS service organizations are helpful. Then, make an appointment. This is an important part of finding the right healthcare provider. A visit to a doctor's office to meet the doctor and staff will help you decide whether that situation is right for your healthcare. However, seeing the environment is not the only part of the process. There are certain questions that you should ask during your visit to help you make your decision. Below is a list of questions to ask your potential healthcare provider.

Do you consider yourself a specialist in the field of HIV?

HIV is a complex disease. The effects of HIV on your body and complicated drug regimens are a challenge to learn and understand. This, coupled with ever-changing research, makes it crucial to find a healthcare professional who is dedicated to following and knowing all there is to know about HIV in order to remain up-to-date on treatment options.

What other services are offered at your clinic?

A clinic that uses a multidisciplinary team of doctors, nurses, physician's assistants, nutritionists, pharmacists, mental health providers and social workers is important. This type of setting creates an atmosphere that fosters taking care of your entire self with the ease of being in one location.

How much emphasis do you put on gender-specific health concerns?

For women, this is an important question. There are different complexities that occur in women living with HIV. The doctor that you are choosing to build a relationship with should be sensitive to these issues and have a working knowledge of how to help you overcome some of the problems that may occur. However, if you are a man, it is just as important for you to make sure the doctor you are seeing is knowledgeable of men's health-related issues.

How do you feel about patient involvement in decisions regarding treatment?

It is important for your doctor to support patient participation in treatment. The most effective care is when both doctor and patient agree that the choices being made are the best decision for one's life. And most importantly, you are the best judge of how you are feeling and how something is working for you in your life. There must be an open line of communication between you and your doctor in order to be able to discuss issues such as when to start a drug regimen or whether certain side effects are negatively affecting other aspects of your life.

Once you have found a doctor that you trust and feel that you can work collectively with, here is a thought to remember to help you sustain a strong relationship with your doctor: Always ask questions. It is important for you to understand what your doctor is talking about and what he or she is asking you to do. Always make sure before you leave the doctor's office that you have asked any questions that have come to mind during your visit, especially when it involves a new drug regimen. It is important to be prepared when you leave the doctor's office. Make sure to ask for a number to call to speak to someone if any questions come to mind after your visit. And when asking questions, there is the potential of being given a great deal of medical information, so make sure to write down the information or ask for brochures or handouts to have something to refer back to. Asking questions is a great way to ensure you are getting the most from your doctor while becoming more educated about your healthcare.

We should all feel inspired to find an adequate doctor who is willing to work with us to build a relationship working towards a healthy life. Always keep in mind that we, as patients, have rights to adequate healthcare. It is important that we know and understand these rights to ensure we receive the best healthcare.

HIV Patient Bill of Rights

  1. The person with HIV has the right to considerate and respectful care regardless of race, ethnicity, national origin, religion, age, sexual orientation, gender or payment source.

  2. The person with HIV has the right to, and is encouraged to, obtain current and understandable information concerning diagnosis, treatment and prognosis.

  3. The person with HIV has the right to know the identity of the physician, nurses and others involved in his or her care, including those who are students, residents or other trainees.

  4. The person with HIV has the right to work with the physician or nurse in establishing his or her plan of care, including the refusal of a recommended treatment, without the fear of reprisal or discrimination.

  5. The person living with HIV has the right to privacy.

  6. The person living with HIV has the right to expect that all records and communication are treated as confidential except in the case of abuse.

  7. The person living with HIV has the right to review his or her own medical records and request copies of them.

  8. The person living with HIV has the right to expect that an advance directive (such as a living will or healthcare power of attorney) will be honored by the medical staff.

  9. The person living with HIV has the right to receive timely notice and explanation of changes in fees or billing practices.

  10. The person living with HIV has the right to expect an appropriate amount of time during their medical visit to discuss their concerns and questions.

  11. The person living with HIV has the right to expect that his or her medical caregivers will follow universal precautions.

  12. The person living with HIV has the right to voice his or her concerns, complaints and questions about care and expect a timely response.

  13. The person living with HIV has the right to expect that the medical caregivers will give the necessary health services to the best of their ability. If a transfer of care is recommended, he or she should be informed of the benefits and alternatives.

  14. The person living with HIV has the right to know the relationships his or her medical caregivers have with outside parties (such as healthcare providers or insurers) that may influence treatment and care.

  15. The person living with HIV has the right to be told of realistic care alternatives when the current treatment is no longer working.

  16. The person living with HIV has the right to expect reasonable assistance to overcome language (including limited English proficiency), cultural, physical or communication barriers.

  17. The person living with HIV has the right to avoid lengthy delays in seeing medical providers; when delays occur, he or she should expect an explanation of why they occurred and, if appropriate, an apology.

By understanding our rights and knowing what we want from a doctor/patient relationship, we can feel better prepared as we journey to find the most adequate medical care to help us make the most healthy choices for our lives.


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This article was provided by AIDS Survival Project. It is a part of the publication Survival News.
See Also
HIV Medications: When to Start and What to Take -- A Guide From
More on Choosing and Working With HIV Specialists