Good Communication Strategies to Make HIV Care Click
May 1, 2015
Some of our most important relationships, and some of the most difficult to navigate, are the ones we have with our health care providers. Finding the right balance between respecting their opinions and questioning their advice can be hard. We can feel reluctant to tell them the truth for fear of being embarrassed or judged -- or in the case of HIV, leaving a record that could even be held against us in the unlikely event of criminalization. And, too often, we feel so rushed through the entire encounter that we leave more confused than when we arrived. Being able to hold open, honest conversations with your providers is vital to good health. That's why it is important to feel at ease with your providers, and to feel that you can trust them -- even in discussions that can make either or both of you uneasy.
Here are some tips toward building a comfortable and healthy relationship with your provider.
Consider that initial visit a trial run, and notice your first impressions. As the appointment proceeds, take mental notes on the provider's style. Some are laid back and treat you like a pal, while others are more formal. Some are used to being the last word on every health subject and speaking definitively; others are more open to discussing options with you and plotting a course together.
Ask yourself: What are your first impressions? Do you feel comfortable discussing personal issues like sex or depression? Do you feel like you could ask questions or challenge professional opinions? Do you feel judged? If you are LGBT, how does the provider react when you bring that up, both in verbal reaction and body language?
Take note of things outside the room as well. Was the front office staff friendly? Did they keep you waiting too long? Was there a waiting room full of people making you and the provider feel rushed? How can you contact your provider between appointments? Will you have direct communication, either through voice mail, email or an electronic medical records site, or do you have to go through office staff first?
While these may seem like trivial details, they can become very frustrating in the long run. It is not absurd to switch providers simply because the office staff is nasty, appointments are impossible to get, or no one ever calls you back to answer questions.
Trust your gut to decide whether this is a provider and an office you want to get into a long-term relationship with. Though health insurance or geographic issues may limit your choices of clinics or practices, there may be other options such as a different provider at the same clinic. Remember, providers may be the experts, but you are the customer.
Mark S. King made a practical and entertaining video showing how he went about finding "Doctor Right" that can help you in your quest.
A list is also a good way to extend the visit if you feel rushed or sense that the provider is trying to get out of the room. Saying, "I know this visit is getting a little long but I have just three more things on my list to discuss with you," can be a good way to set parameters and get what you need.
It can be intimidating to share details of your life, especially when those details include typically taboo topics like the number of sexual partners you have, interpersonal violence or drug use. Most providers have heard it all before and should take it in stride. (If your provider doesn't and you really do feel judged, consider a switch because this attitude can get in the way of an honest relationship and good care.)
It can be particularly hard to discuss mental health and relationship issues, but again, this information is important to your overall health. Depression and anxiety, for example, can be the cause behind physical symptoms. They can be treated but only if your provider is aware of them. Relationship issues such as interpersonal violence are also relevant to your care as they can put you at risk for reinfection, other STDs or injuries.
If you have a history of trauma that can make medical exams difficult, it can help to let your provider know that you have experienced past or recent trauma. The National Council for Community Behavioral Healthcare suggests you let providers know what's helpful to you, such as requesting that they ask permission to do a procedure, keeping as many of your clothes on as possible, or having a supporter with you in the room.
It may be easier to bring up these sensitive topics when health care providers ask the right questions, and many will -- especially those who specialize in patients living with HIV. Unfortunately, some doctors are just as reluctant to bring up uncomfortable subjects as their patients. Others are too rushed to remember. Ultimately, it is up to you to make sure your health care provider is operating on full information. Again, try writing down a list of things you want to share ahead of time to make sure you don't forget.
There are a few steps you can take to ensure that you share information with your provider in a safe and mutually beneficial way. You can ask your provider to document in your medical records that you have disclosed your status to sex partners. Some people have even brought their HIV-negative partners to the doctor with them to have the conversation recorded in person, which is also an opportunity for their partners to get prevention questions answered. And if your viral load is undetectable, your provider can also document that you have had a conversation about what that means for HIV prevention.
You can also talk with your providers about whether or not they need to document any conversations about your drug use or sexual behavior. There are a number of guidelines about this, including one fornurses in Canada and another for clinical providers in the U.K. that may help facilitate this conversation.
"It is usually suggested that records around risk and disclosure are kept to minimum, and that recording nondisclosure and lots of risk-taking is not necessary," says Edwin J. Bernard, coordinator of the U.K.-based HIV Justice network, "whereas recording that disclosure has taken place, and that clinician information regarding effectiveness of undetectable viral load on HIV prevention has taken place, is a good idea."
It is up to you whether you obtain safer sex support from your medical provider. Discussing these issues with community-based or peer counselors may be easier. At times, some providers may have a different approach or agenda based on public health priorities (preventing new infections), rather than individual support (promoting your sexual health).
It's also OK to question the information they've given you. Medicine is not an exact science and health care providers don't all have the same opinions about the best course of action. If something your provider says contradicts advice you've gotten from another health care provider or doesn't jibe with what your partner's provider suggested, ask for clarification. And if you aren't comfortable with the advice your provider gives, based on past experience or things you've read, speak up. It's better to give your provider the chance to explain than to try to sort it all out with information you find on the Internet when you get home. It is also better to tell your doctor that you disagree than to leave the office under the assumption that you're satisfied when you really have no intention of following the advice.
Advocating for ourselves can be tricky especially when we're still trying to absorb information. Consider bringing a partner, friend or family member who you feel comfortable with to your appointment. Another set of ears often helps, and your companion may have an easier time saying "Wait, I don't understand" or "Are you sure that's the very best course of action?" than you do.
We can't promise that these pieces of advice will guarantee a relationship free of awkward moments. But we do think that this can set the stage for an honest relationship with someone whose job it is to help manage your health.
Martha Kempner is a freelance writer, consultant and sexual health expert.
Follow Martha on Twitter: @marthakempner.
Here are some tips toward building a comfortable and healthy relationship with your provider.
Find a Provider You Click With
Though we usually choose our health care providers based on their expertise, location and whether they accept our insurance, the most important factor is often their personalities and bedside manners -- all of which can be impossible to know before the first visit.Consider that initial visit a trial run, and notice your first impressions. As the appointment proceeds, take mental notes on the provider's style. Some are laid back and treat you like a pal, while others are more formal. Some are used to being the last word on every health subject and speaking definitively; others are more open to discussing options with you and plotting a course together.
Ask yourself: What are your first impressions? Do you feel comfortable discussing personal issues like sex or depression? Do you feel like you could ask questions or challenge professional opinions? Do you feel judged? If you are LGBT, how does the provider react when you bring that up, both in verbal reaction and body language?
Take note of things outside the room as well. Was the front office staff friendly? Did they keep you waiting too long? Was there a waiting room full of people making you and the provider feel rushed? How can you contact your provider between appointments? Will you have direct communication, either through voice mail, email or an electronic medical records site, or do you have to go through office staff first?
While these may seem like trivial details, they can become very frustrating in the long run. It is not absurd to switch providers simply because the office staff is nasty, appointments are impossible to get, or no one ever calls you back to answer questions.
Trust your gut to decide whether this is a provider and an office you want to get into a long-term relationship with. Though health insurance or geographic issues may limit your choices of clinics or practices, there may be other options such as a different provider at the same clinic. Remember, providers may be the experts, but you are the customer.
Mark S. King made a practical and entertaining video showing how he went about finding "Doctor Right" that can help you in your quest.
Plan Ahead
Office visits are not very long and much of that time is spent being poked and prodded. It can be easy to walk out without asking the one question that's been on your mind for months. The best way to prevent regret is to plan ahead. Make yourself a list including the questions and concerns you have as well as the things you want to make sure your provider knows (see the "Telling the Truth" section below). And don't censor yourself out of a fear of looking foolish -- your headaches probably aren't brain tumors, but telling your provider that the thought has crossed your mind can both help determine what is really going on and put you at ease as well.A list is also a good way to extend the visit if you feel rushed or sense that the provider is trying to get out of the room. Saying, "I know this visit is getting a little long but I have just three more things on my list to discuss with you," can be a good way to set parameters and get what you need.
Telling the Truth
Whether they are trying to diagnose a new problem or manage your existing condition, health care providers are relying on the information you give them. But sometimes it's hard to give them the full story because of embarrassment or a fear of judgment. You may not want to admit that you didn't follow the advice you got at the last visit. Maybe you haven't quit smoking, changed your eating habits, or taken your medication exactly as prescribed. Revealing this can make you feel like a child being sent to the principal's office -- but keeping it to yourself can have negative repercussions on your care. Try to remember that you're an adult and, though it may feel this way, health care providers should not be the behavior police. Go ahead and tell the truth.It can be intimidating to share details of your life, especially when those details include typically taboo topics like the number of sexual partners you have, interpersonal violence or drug use. Most providers have heard it all before and should take it in stride. (If your provider doesn't and you really do feel judged, consider a switch because this attitude can get in the way of an honest relationship and good care.)
It can be particularly hard to discuss mental health and relationship issues, but again, this information is important to your overall health. Depression and anxiety, for example, can be the cause behind physical symptoms. They can be treated but only if your provider is aware of them. Relationship issues such as interpersonal violence are also relevant to your care as they can put you at risk for reinfection, other STDs or injuries.
If you have a history of trauma that can make medical exams difficult, it can help to let your provider know that you have experienced past or recent trauma. The National Council for Community Behavioral Healthcare suggests you let providers know what's helpful to you, such as requesting that they ask permission to do a procedure, keeping as many of your clothes on as possible, or having a supporter with you in the room.
It may be easier to bring up these sensitive topics when health care providers ask the right questions, and many will -- especially those who specialize in patients living with HIV. Unfortunately, some doctors are just as reluctant to bring up uncomfortable subjects as their patients. Others are too rushed to remember. Ultimately, it is up to you to make sure your health care provider is operating on full information. Again, try writing down a list of things you want to share ahead of time to make sure you don't forget.
Considering Criminalization
When it comes to HIV, it's important to be aware of your -- and your health care provider's -- legal obligations under HIV criminalization laws and policies without letting those get in the way of your health care and your patient-provider relationship. Most states have laws or regulations that require people with HIV to disclose their HIV status to sex partners (even if condoms or low viral load means there's a low-to-incredibly-low risk) or face specific legal charges. If you don't know what your state or territory's HIV-specific laws are, learn about them. Although the chance that you will be involved in an HIV criminalization case is extremely low, it is highly likely that your medical providers will be asked to testify if you find yourself being prosecuted.There are a few steps you can take to ensure that you share information with your provider in a safe and mutually beneficial way. You can ask your provider to document in your medical records that you have disclosed your status to sex partners. Some people have even brought their HIV-negative partners to the doctor with them to have the conversation recorded in person, which is also an opportunity for their partners to get prevention questions answered. And if your viral load is undetectable, your provider can also document that you have had a conversation about what that means for HIV prevention.
You can also talk with your providers about whether or not they need to document any conversations about your drug use or sexual behavior. There are a number of guidelines about this, including one fornurses in Canada and another for clinical providers in the U.K. that may help facilitate this conversation.
"It is usually suggested that records around risk and disclosure are kept to minimum, and that recording nondisclosure and lots of risk-taking is not necessary," says Edwin J. Bernard, coordinator of the U.K.-based HIV Justice network, "whereas recording that disclosure has taken place, and that clinician information regarding effectiveness of undetectable viral load on HIV prevention has taken place, is a good idea."
It is up to you whether you obtain safer sex support from your medical provider. Discussing these issues with community-based or peer counselors may be easier. At times, some providers may have a different approach or agenda based on public health priorities (preventing new infections), rather than individual support (promoting your sexual health).
Ask Questions, Speak Up and Bring a Friend
Sometimes it can be hard to absorb everything our health care providers are telling us. They may talk too fast or use too much medical jargon -- or they might just have a lot of information to offer. Don't worry if you don't understand it all the first time. You are well within your rights to ask them to go back, say it again, or explain it differently. It is OK to say "I don't understand." That doesn't make you stupid and it doesn't mean you're a difficult patient.It's also OK to question the information they've given you. Medicine is not an exact science and health care providers don't all have the same opinions about the best course of action. If something your provider says contradicts advice you've gotten from another health care provider or doesn't jibe with what your partner's provider suggested, ask for clarification. And if you aren't comfortable with the advice your provider gives, based on past experience or things you've read, speak up. It's better to give your provider the chance to explain than to try to sort it all out with information you find on the Internet when you get home. It is also better to tell your doctor that you disagree than to leave the office under the assumption that you're satisfied when you really have no intention of following the advice.
Advocating for ourselves can be tricky especially when we're still trying to absorb information. Consider bringing a partner, friend or family member who you feel comfortable with to your appointment. Another set of ears often helps, and your companion may have an easier time saying "Wait, I don't understand" or "Are you sure that's the very best course of action?" than you do.
We can't promise that these pieces of advice will guarantee a relationship free of awkward moments. But we do think that this can set the stage for an honest relationship with someone whose job it is to help manage your health.
Martha Kempner is a freelance writer, consultant and sexual health expert.
Follow Martha on Twitter: @marthakempner.
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